I'm sorry that I never heard of this variety of leukemia before, but I just want to wish you the best of luck with your treatment, and with beating this. How are you feeling? It looks from your photo like you have some loving support - and that is very important. lots of love, xxxx Penny
HCL is a form of non hodgkins. It is pretty rare - I am told. I'm in remission but struggling. I cannot be cured. I am struggling just waiting for it to return. It will return - it's just when. It is eating me away. My confidence has plummeted and I guess I just needed to hear someone say 'I had that and I understand'.
Thanks for your kind words - I do have support and know I am lucky to have this.
I don't have HCL but i know how it feels. I think the one thing I learnt is that you can't let cancer rule your life. I mean look outside-- there is a world out there- the cancer could come back but before then you could get hit by a bus.
I had lukemia when i was little- about 4. I was told it was 99% sure that i would get cancer again- im 18 now and I've got cancer again.
Its really hard, it feels like a timebomb is going to explode and ruin your life again at anytime. I guess in the end you have to look at it as you just have to make the most out of everyday. I mean life doesn't stop so go out and enjoy it! If you need anything feel free to PM.
I appreciate your kind words. The timebomb analogy is spot on. I can hear it ticking all the time. But I cannot see how long I've got. If I use my head I know I have to live my life - I know a bus could take me just as easily. I'm sure you know its not that simple. I am afraid to let my guard down.
I am not happy at work and think I need to make this change. I have only been back to work for 6 months though. I don't want to give up too soon. I would hate to fall ill again and think - what a waste. I should have done this and that.
You are very brave to have coped from being so you young when first diagnosed. I wish I had your strength.
You take care and thank you for being so kind.
It was good to read your blog and im sorry to hear about your diagnosis being terminal. It sucks doesn't it??? Me too. I hope that you get a response from a fellow sufferer, my cancer is breast. Anyway thought i'd say i have just began the process of retiring on the grounds of ill health. If you have a pension it could be worth your while looking at his option. Send me a PM for further info if you like. Welcome to the site. Jools x
Hi Wendy,
I've only just found this site! I too have HCL - I got it in 2003 and had treatment with 2cda (cladribine) - I guess you did too. Anyway I am perfectly healthy and go for checks every 8 months or so. As you know HCL will come back and dealing with this is quite hard, but in time you will learn to relax more and not panic everytime you get a cold and think oh god its coming back! But it is not TERMINAL. It is a chronic condition as in it is a very slow thing, and even when it does come back that won't be it....you will just have to be treated again, and then it will go away again. There also new treatments being worked on BL22 for instance, so it really is not a gloomy picture for us - my doc has told me I should live a life as long as anyone else unless as you say you get run over by a bus or have a heart attack! Also if cladribine doesn't work for you long term, there are already other options to try ...like Pentostatin.
I think the scariest thing is knowing you have leukaemia!!! I think its the word that just terrifies you, but really we are so lucky to have this type - you can live with it and have a completely normal life.
What it has done for me, is to appreicate things in life and not waste time with petty things, you realise that having 'things' really don't mean much if you don't have your health...its been a real shake up...but in a good way. So if you are not happy at work ...go for it and change your job and do something that makes you happy.
How did your treatment go? Again we are lucky in taking chemo...hair didn't drop out!
I know quite a few people here who have HCL - we talk on the Leukaemia Care site...although people don't tend to visit unless there is anything to report, but we keep each informed as to how we are. Also try this site www.network54.com/Forum/263810 it is the States and there are people from all over the world on there, actually its quite informative and you can ask questions about your condition/treatment - there are some very knowledgable people on there (not medical) ...try it!
I see you haven't logged on since May, so I hope you get this, you must feel very alone in not finding anyone else with this odd HCL!!! Hope to hear from you,
Nicky.
It's great to actually meet someone with HCL. especially when you are so positive. However some of the things you have said are a little confusing as my experiences so far (and my personal outlook) are somewhat different.
I also had Cladribine but it did not go so well. Following intavenous and sub cut treatment I became very poorly and spent 3 months in hospital. 1 month of which in intensive care. Things did get bad. My body started shutting down and I reacted to everything - even the plasma transfusion. My consultant was wonderful and she said I'd had it particularly hard - they even took photos of me and sent them off around the country for help. My skin rashes were shocking. My lungs reacted and i was incubated for a while. My body swelled so i could not move my limbs nor open my eyes. My liver was pickled and my temps were shocking. I was having the shakes when my temps spiked and it was frieghtening. I think the worst thing was the isolation. I was alone and could not even touch my family. They had to wear masks and gloves. I was torn up with the need for their love which was kept away from me becasue of risk of infections. I cannot tell what what that's done to me. I am so clingy now. Constantly need physical contact and cannot be on my own. Then when I started picking up they started Pentostatin - and i did loose my hair. Mainly it thinned but i was pulling out chunks so stopped brushing it.
I know it's not classed as terminal - but we cannot be cured and when your husband is called in to see you several times on the basis they thought I was leaving this world...I know it is capable of killing me. I have to say it's had a bloody good go at trying to take me so I consider any risk of it returning just as life threatening as a terminal diagnosis. Not being cured is too frightening. My last bone marrow aspiration showed signs of HCL. I cannot cope with knowing its still there. I wish I was as positive as you but it's still too raw. You say a nornal life is possible - but my normal has gone - my confidence, my independence and my future is no longer in my control. I had been brought up to work hard - everything was in my grasp - I can be whatever I want to be. I can make the difference. I guess with this situation it's not in my control.
I am doing something about my job - and I thank you for that. You made me think its simple than I thought. Wish me luck, I have an interview on Monday. I am nervous.
I know I need to deal with this better. I do think I appreciate the important things more now - my husband and family are these things. But I have just not got past the fear. The thing is my Dad died from Cancer the year I was diagnosed. I miss him desperately. I feel guilty that I survived and I'm still not happy!
I will definately look at the Leukaemia Care site and hope some of your positivity will rub off on me. I appreciate your encouragement.
Hah! There you are Wendy, I've been checking daily ....I was just hating the fact that you were thinking you were all alone out there. Fear not...we are here for you! I was quite lucky to have found the American and Leukaemia Care site before I needed treatment so was getting lots of advice from fellow HCLers. So straight away I didn't feel alone, when you are told you have something rare it makes it sound even more scary. Some haemo/consultants have never had to deal with a case!
Now what you went through sounded really awful and is not the norm. I did have some problems in that they think I was allergic to septra/antibiotics which messed things up a bit and I had a fever, colourful rash (all came to have a look!) and awful swelling (wouldn't have recognised me...and not attractive!!), high heart rate/low blood pressure, and yes they had to call my other half in to hospital late at night. The consultant from Intensive Care was called down but she said there was nothing she could do....thanks! Your condition obviously was a lot worse. Do they know why it all went wrong? Its important to know that for next time. I wonder if you managed to complete the 2cda course? And I wonder why they put you on Pento so soon? There are so many questions, I wonder also if your consultant had treated HCL before? I can see now why you consider it to be life threatening.....another reason to find out what exactly went wrong, because if it was the 2cda that your body couldn't handle then they would have to look at other options for you, but if like me it was an allergy to one of the other drugs you were taking that started you off on a downward spiral then that needs looking at too. How often are you having bone marrow aspitrations? Are your blood counts OK at the moment? I always ask for details of my blood counts and log them so I can see what they are doing - a control thing I think!
All the nurses at Cheltenham Hospital were telling me when my counts went down to nothing and was neutropenic that the Doc would stop the 2cda (as they do with chemo for other cancer sufferers) but no, apparently not and they were gobsmacked when Doc said carry on giving it! HCLers counts are supposed to crash to kill off all the hairies, sadly it kills all the good cells too - bit of a bugger!!! And, yes the shakes are common - I had those too, the injections to stop them were so nice and welcome - wonderful feeeling when the shakes stopped! I too got my own room and wasn't allowed to have flowers...bizarre!
And, I know exactly what you mean about being clingy ..... since all this happened I have not wanted to go abroad on holiday, I just wanted to be at home with Andy and the dogs, I'm quite happy to visit family, but I have no inclination to leave the country! I am just so happy to be home and content. People often say gosh you haven't been away for years ..what you need is a break! Oh no I don't!!! But its hard to explain that to anyone else, the words come out but really they haven't got a clue what you mean.
But as you say your husband and family are what counts now. I was sorry to hear about your Dad, it so hurts doesn't it, but I'm sure he would want you to make the most of your life and be happy. You had a double whammy in losing your Dad and having the diagnosis, that would be hard for anyone...allow yourself some time to heal ..on both counts. Have you tried talking to the helpline here or at Leukaemia Care - they are very supportive I have heard.
Waid and Tim on the American site have loads more experience than me, Tim in particular has also had his problems...but they are so willing to share what they know. they have a really good understanding of HCL. It really does help to have contact...you just don't feel so alone, and even emailing and getting it off your chest helps (I feel that you have had it all trapped inside you) .... they have all been through treatment in different ways and can offer so much..... there are even people on there who have Hcl in their bodies but not sufficient to have treatment....and have gone for years on a watch and wait...not everyone needs treatment. There is a person called Lou who I think is now up to 16 years since his last treatment! It can take years to come back, do you know what percentage of hairies you have? The UK site is a lot quieter. But if you have a look at Nick's story, he could not get his head round having HCL, and now he has got married and has a new baby, finally he has chilled and felt more relaxed.
Why don't you cut and paste your email above and put it on the American site (just ignore the political strings!!!), I'm sure you will get lots of support, help and advice.
You said your future is no longer in your control........ OH YES IT IS!!!! Take control girl...you already made the first step today by going for your interview ...hey!!!! Doesn't matter what the outcome is ...you made that decision...good for you. I'm really pleased for you. Hope it went OK, might not have been exactly what you wanted but you got out there and went for it - brilliant. You say your 'normal' has gone, well you have been through an awful lot, but I'm sure you can come out the otherside...you just got a bit lost for a while - you will find your way again. Step by step (there's not many steps - honest!).
There is a good blog here: http://hcljournal.blogspot.com/ he also had his problems dealing with it, but his last blog says it all!
A lot of people do just sail through treatment, person I know in Lancs - Frank....he didn't have a single side effect - so it can go well.
Well I feel like I've just written a book - sorry! Your email was much more structured than mine, I ramble and jump all over the place so apologies again!
Any questions just fire them off...always here for you.
Nicky.
Don't waste your life waiting for this to come back
Hi Wendy just a quick hello to see if this is working if i have got it right (that would be a first he he) we can have a longer natter. I have been brought here by Nicky Clark (she says jump i say how high Marm) all the way from Robs site in America just to put your mind at rest. There is life after HCL you will be fine there is so much that can be done for us. although after chemo i found that i couldn't play the piano anymore but i remembered that i couldn't actualy play it before i was diognosed so that wasn't to bad. Anyhow don,t worry to much there are lots of us out here and we all have plenty of storys to tell you keep well
....Bobby....
__________________
There is no road to happiness!! Happiness IS the road
I was diagnosed in 1992 with HCL at the age of 28, i have had various treatments but i am still very much alive kicking (and sometimes screeming).
The longest i have been in remission for is 10 years. I am currently being treated with pentostatin and all is going very well, my counts are normal and the only time i do not feel well is after the chemo for a couple of days. Ihave had 12 of 15 cycles and these are given every two weeks.
I try and turn a negative into a positive- you will know what they are. I know there are down sides but these have to be overcome for the sake of our own sanity and others close to us.
HCL has not stopped me from acheiving any of my goals and if anything it has made me a better person.
I live in North Wales and i have yet to meet someone with our condition so we are unique.
All the very best and hope to hear from you,
Dave.
Nice to see you both on here!
Bobby - what a nice message you left for Wendy.....well done mate!!!
Dave - I used to live in Corwen and also Menai Bridge....you anywhere near there I wonder. Which hospital do you go to? You were very young to get HCL ...but hey great remission! Not much pento left to go now then, have you tried 2cda...wonder what you thought of the comparision?
A group off the Leukaemia Care site did meet up a couple of years ago...I wasn't able to go, but from memory Jenny, Frank and Richard and maybe ALan met in the New Forest for a weekend away....so contact is possible!! They are all doing fine now too.
Bye for now,
Nicky.
I was diagnosed 11 1/2 years ago and treated with 2-CDA for 7 days. I had a 10 year remission before I learned that it had come back. Part of me thought I'd be lucky enough not to get it back and the other part was waiting for the shoe to drop. I had been checked every 6 months, then once a year up until the Bone Marrow Biopsy confirmed what the blood tests hinted at.
Last year I had been on anxiety meds which left me extremely tired. I am a teacher and prepared my curriculum for the whole year in advance just in case I went into treatment. This wasn't an easy task to write substitute teacher notes for 180 school days. I was driven to get things done "just in case" it was time for treatment. One year went by and then another six months to the present time. I prepared all of the worksheets, wrote the lesson plans for this year again and I'm still waiting. My co-workers think I'm super organized. I think of it as being prepared for treatment. My ANC number was lowered to 1.1 and then started increasing as high as 1.6 and now I am 1.3 and waiting. I have a spreadsheet to chart my blood test results. I am saving it for "peace of mind" in case there is another relapse after my treatment. I will know how low my blood tests can go before I really feel tired.
I too was very ill after my chemo 11 1/2 years ago. I had a fever after chemo and had to be hospitalized for 11-14 days. I had pain and spasms in my legs that could only be relieved by sitting in water. I ended up getting a staff infection from the hospital, felt like a pin cushion from the hourly blood tests and dislocated my jaw from grinding my teeth. I tried to internalize my fear the first time because everyone else around me was falling apart. I don't think I will do that next time, it was too painful. I am however looking forward to getting the chemo over with and to be in remission to "get on with life". Over the years we got a hot tub which I plan on using for me only. I don't want to have those leg spasms again! I seem to live in segments from blood test to blood test. The more time that goes by, the better I am learning to cope. I am trying to stay strong by working out at the gym 5 days a week. Some days I push through, other days I can't. I rest when I'm tired and push myself when I'm feeling good. I sometimes wonder if that pushing gets me in my tired rut.
I've learned that some days unless someone asks me how I feel, I forget that I have HCL. I found that the anti-anxiety drugs make me feel worse. When I took them I felt like I drank too much Nyquil (cold medicine that makes one groggy). I've had many attitude readjustments. I've been through sad emotions, mad emotions and glad emotions. I try to look at the positive because I wasn't living life in the "waiting pattern". HCL is chronic where it takes a long time for it to interfere enough for treatment. HCL can be treated and there are more drugs that have been tested and used for treatment. I do believe that it was a process that took me to the point where I am now. It has been quite an experience and is just part of my life now. I can let it get me down, or I can move ahead. I do wish you the best of luck, and days of good health that turn into years of good health.
i live in Penrhyn Bay near Llandudno.
I go to Glan Clwyd Hos Near Abergele. I have had cladrabine and this gave the longest remission and i had no side effects but it was not available due to a world shortage. It should we have been told be available again soon but i could not wait from April up untill the end of this year- the hairies were too much! I tolerated the cladrabine much better than the pento and the treatment was over a lot faster. But on reading peoples stories we are all different in the way we are effected by each treatment.
I have a bike (motor) and go to Corwen regular and to Bala to drink coffee at the side of the road with my wife- great times in a lovely part of the world.
Hi Dave,
Ah, so envious...you are in a lovely part of the country. I was thinking you might have gone to Ysbuty Gwynedd, but obviously Abergele is nearer! There is a Prof Cawley in Liverpool who is bening funded by Leukaemia Care (if memory serves) and he is researching HCL.....come on man!!! I used to go to Ysgol y Berwyn in Bala a long time ago....I'd love to visit again one day.
Do you just pass trhough Corwen on your way to Bala I wonder??? When we go to Anglesey we always do the A5 through Langollen and Corwen and Betws y Coed ...its longer but so beautiful. Sometimes I stop in Corwen for a coffee, near NatWest Bank, my Dad used to work there, always look to see if I can spot someone I used to know, but its so long ago now since I was there!
Isn't it wierd how everyone reacts differently with treatment....now that you've been on Rob's site...you can see how everyone is so different, I wonder why that is.
Anyway
All the best, take care
Nciky
Great to hear from you, I guess Wendy doesn't sign in that often - but no doubt we shall hear form her again soon. Gosh, that's a really great remission you have had, I hope I shall reach 5 years....no particular reason for 5 - just sounded good when I embarked on this journey! It is satisfying though to keep a chart of counts and know you are on the level path (equally though must be worrying to see your counts go down).. Those anxiety meds sound awful !! I couldn't cope with being even more tired! Its funny how we have good and bad days, I'm going through a tired stage at the moment and find a nap works wonders (although tricky when at work!) but some times I don't have a choice when sheer exhaustion hits for no reason and the only thing to do is lie down, I can't even sit up when it happens and out like a light.
But other than the tiredness life does carry on pretty normally really - are we the first 'HCLers' you have talked with? Although in 10 years you must have come across someone? Two colleagues of mine both know of people who have been diagnosed with HCL, and I have been in touch with one.
Hope you will keep checking in, and let us know how your counts hold up are you planning on 2cda again this time?
Regards
Nicky.
I actually found this site from your posting on Rob's American site. I signed up there about 1 1/2 years ago when I learned my leukemia was back. It is really good because I learned about some of the new treatments that are available now. It is great to hear the feedback from others who have tried different medications. I used to go on the site a lot and then I became too obsessed with my counts. I was always in HCL mode. I was getting down and took a break from it. In fact, I couldn't remember my password to get back on. I do go on Rob's site (without signing in) just see if there is anything that I could add. WAID is very knowledgable and he does a great job explaining. I saw your posting which led me to this site.
I am waiting for my counts to get to the point when I can have treatment. I just want to get it over with and hopefully go back into remission. The plan right now is to have a second treatment of 2cda since I was able to maintain a 10 year remission. I am interested in getting the medicine by injection for 5 days instead of having to wear the chemo cassette pack with the pic line for 7 days. I've been interested to read about those that have had 2cda by injection. I haven't seen any posts about it. I haven't personally met anyone that has HCL.
One thing I've noticed is the different ways of spelling leukemia. I kept trying to type in the web address and it wouldn't connect until I changed my spelling.
Do you find that some people in your life forget that you have leukemia because you can have really good days? When I feel good, I keep moving. I also have the days when I know that coffee will not help me "wake up" at all. If I were to describe the fatigue, I would say being so tired that you just want to cry. It can come on for me really quickly. I have learned how to plan my energy. If I get up first thing and go to the gym, I won't be able to sustain my energy. It is comforting to hear other non HCL people complain about being tired because then I know it isn't just me. Sometimes I can worry myself needlessly.
If anyone is looking for more information, I encourage you to check out this site http://www.network54.com/Forum/263810/
This site is helpful to understand blood counts http://www.cc.nih.gov/ccc/patient_education/pepubs/cbc97.pdf
Roberta
Hi Roberta
I was wondering if you had considered having the 2cda over 5 days. You have it for an hour(well they say an hour but i never got out under two)every day for 5 days. I had HCL in MAY 2005 and am in remission . I think there are a few on Robs site that had it this way. I suppose the injection method would be easier still, but i thought i would put my two penny worth in for your consideration.
The only person i have heard that had the injection method was Peter UK on Robs site.
Keep well
....Bobby....
__________________
There is no road to happiness!! Happiness IS the road
It was luck i went to Ysbuty Glan Clwyd as when my GP got the original blood counts back when i was 1st diagnosed (I lived in Conwy at the time) the place to go was to Glan Clwyd as a doctor Edwards was there who had a good reputation. Dr Edwards has since moved to Ysbuty Gwynedd and for me this is a shame as he was realy good.
I work as a contracts manager for a building company and a job we are working on in Llanduno, the architect's wife works in the heamotology ward at Liverpool Royal where Prof Cawley is based. I have spoke to my GP and he will refer me to Prof Cawley as Pro Cawley has said that he would like to see me but needs a referal. It just seemed to good a opertunity to pass up as after all he is a expert in HCL. I will keep you informed.
I usually pass through Corwen but i will stop next time and try to find 'your coffee shop'- mind you the weather is getting cold so our rides out will be less frequent- shamed to say but I am a fair wether rider!
Yes, I was considering having the 5 daily injections of 2cda. Did it make you feel sick after receiving a stronger dose over 5 days? Were you able to drive yourself to and from treatments? I don't want to have the 7day treatment attached to a pic line and dose dispensing cassette. I didn't know if a stronger dose of 2cda over less time would cause more nausea or not. I'm considering my options for when the ANC number reaches the treatment level. Until then it is just monitor and wait.
Hi Roberta
I was always driven to the hospital to have the chemo either by my wife or a friend but i always felt fine afterwards and could easily have driven i,m just a lazy sod.
I had a canula put into my hand (which i got to keep for three days after that they put a new one in so the whole five day treatment i had two canulas) sat in a nice comfy chair in the chemo suite that we have in our hospital while the drug slowly dripped into the canula. Then the drip was taken out flushed and i was on my way home.
I had no reaction to the stronger dose at all and the whole 5 days was very easy. Of course i had all the fever problems a couple of weeks later once the drug started to kick in but Waid told me (God she is an angle) that it was a good sign that the Hairy's were being clobbered .
....Bobby....
__________________
There is no road to happiness!! Happiness IS the road
Thanks for your reply!
I wouldn't be in too much of a rush to get treatment over and done with ...the longer you can go the better really....you want as few treatments overall as possible...so strech 'em out! I had a picc line last time and had my treatments over 6 weeks...ie once a week...must say it was brilliant in that I would drive myself to hospital have the 2cda go home and take the dogs for a walk! This all worked fine until things went pearshaped - they reckon I was allergic to the septrin (I think it was called) Doc wants me to have over a week next time and will have to go in to hospital for the week. And actually, if I hadn't of had that picc line I would have looked like a pin cushion! They were sticking all sorts of things in via it!
I really NEED to see my haemotologist regularly....I need to hear him say ..you're fine, off you go for another six months. It gives me the confidence to go the next six months, it is perhaps living 'by appointment' but it works for me, I don't see it as a pain to have to go for the check ups, I look forward to them!
Yes my family and others totally forget I have leukaemia.... and I think it is the Americans that spell leukaemia differntly to us.
The old tiredness is a strange thing isn't it.....obviously there are quite a few of us who have it, but my Haemo man says nothing to do with HCL and GP puts it down to HCL. So stalemate! But it must be something to do with HCL, we'll just have to work round it, and you are so right in that sometimes it hits really quickly, I can be sitting at my desk absolutely fine, and the next minute I have no choice but to have a sleep. I also find if my usual routine is changed it can floor me.
All in all though, I am functioning fine, and just recently I saw a friend not seen for years, she said you don't look as if you've had a days illness in your life....guess I was quite pleased and proud of that.....HCL....stuff you!!! YES!!
Take care
Nicky.
Blimey thats a conicidence and a small world! ....lucky you, do let us know how you get on with Prof Cawley. He treated Frank from Lancs on the once a week for 6 weeks regime, (or it could have been 7 I can't quite recall now) although he didn't invent the weekly system, I think he was one of the first to try it. I think it has now been proved though that it really doesn't make much difference to the outcome. It would be interesting to know what he is researching into exactly at the moment and what he thinks the future holds....they must crack this one day!
Pleased to hear you are a fair weather rider.....blimey a sensible man!....few and far between!
See ya!
Nicky.
I am gob smacked - where have you all come from? I'm not sure I can express properly what this feels like. I've felt so alone for so long. Then you all appear. You've been there too. My jaw is literally hanging open. I feel relief that there are other people out there - who are getting on with HCL. To hear so many long remission periods is re-assuring too. I guess 'rare' does not have to mean 'alone'.
Nicky - I owe you a special thank you. You have been so kind to bring people to me. You must know how important this is to me. Thank you seems inadequate
Nicky you are right - I need to know more about what happened last time. I was just in a hurry to get away. The thing is my consultant has retired and I will meet my new one for the first time in December. I hope they can look back. I understood the chnage to Pentostatin was cos they thought my reaction could have been to the cladribine. I had the Cladribine, intravenously, weekly for about 3 weeks. then one week subcut. Then I was hospitalised, after the 3 months in hospital they restarted treatment with a 'Groshong' line (not sure of spelling) cos my viens just went AWOL. I think knowing more will prepare me - I will ask. I last had a blood count in May - too embarassed to ask GP for another test before December. I have been feeling awfly tired recently and bruising a bit. However I think I have been down. I know I should not be embassed but I am! You seem so 'in charge' of your HCL. I have not been - but I am going to get in charge. I remember being told there were still cells present in my last bone marrow test - but 'at a level not to worry about'. I think the fact is - any level worries me. I need to ask what that level was. So when another test comes around I have a benchmark.
Some good news! I have found the courage to leave my job and I have got the job I went for. Thanks for helping me build my confidence. Handing in my notice tomorrow - arghh. Wish me luck!
Need to read all the messages again - still stunned!
Thanks everyone
Wendy x
...of your posting on the forum wish you strength and love; my husband's cancer, myeloma, isn't all that rare unfortunately, but most people still haven't heard of it and it is really hard to have to explain each time. And it's 'hidden' like yours - most of us don't have to think about what is going on inside our bodies and don't want to, but it's something that cancer does in a very sneaky way.
Anyway, even though I hadn't replied until now because I couldn't give you any information, I'm so glad you are feeling stronger and less alone - that is good news in itself!
So please remember that all those many readers will be wishing you well even if they don't always reply. Took me ages of lurking before I ever got up the courage.
Hah! I was hoping you'd have a nice surprise when you came on here next, the number of replies has rocketed from the very sad 6 when I first joined! Mind you it will take you half an hour to plough though all of the above...think I've had a case of verbal dioreaha (can never spell that!!) . I still think you went through a nightmare time, but that doesn't mean it will be the same next time at all. The very fact that you are on 6 monthly checks is GOOD, this means they they think your counts are fine, you would be in getting your counts a lot more frequently if your counts were poor.
But actually if you are feeling vulnerable ...then it may help to monitor your counts so that you can actually see they are fine - doesn't work for everyone as Roberta said above ..she was obsessing over her counts. Me, I like to seee 'em in black and white! Equally I wouldn't hesitate in getting a blood test if I'm not feeling right...just ring the surgery say you are not feeling right and would like a blood test....simple as that....I would see the nurse at the surgery then having spoken to doc.
Otherwise you'll do your head in worrying if you are OK or not! I am feeling awfully tired at the moment too...its a right pain isn't it...I can always drag myself out to the pub at the weekend though!
It is scarey to think there are still hairy cells lurking but they take so long to take over and force treatment ...you can still carry on in the meantime...try not to think about the hairy buggers!!! Or think of them as hairy buggers - make fun of them, and don't think of them as cancerous cells. You can live with these hairy buggers! Hust think if we can go as long as Roberta's 10 years...you will have spend that 10 years worrying unessarily.
Have you had your flu jab yet???? Got mine next week.
Don't forget to ask your new consultant if he/she has treated ANY cases of HCL before.....if they haven't , ask to be referred to someone who has. Also when you ask for the details of what happened, having a new consultant will be a lot easier and less emotional than if you were discussing it with the old consultant, it will be like the new one reading you a report. Take a notepad with you with ready prepared questions ...will make you look very efficient!!! And, will be a good start with the new consultant! I'm SO BOSSY!!!!!!! Hope this is coming across right and doesn't sound like I am dictating what you should do argh!!!!
Hey!!! What a result with the job...you must be chuffed to bits...what will you be doing?
By the way, did you take a tablet called septra or septrin before going in for treatment, I had it and it was taken about twice a week for a few weeks before going in ....my memory is bad now, I think it was to prevent getting pneumonia? I have noticed on Rob's site that a growing number of people have experienced problems and docs are putting it down to this drug not 2cda, my doc thought the same...might be worth a mention if you took it?
Well I've managed to blab on for ages again, ooops! Have you niticed that when you are doing an email in comment box, it is only very short and then when you press POST - up it pops and it is absolutley miles long argh!!!
Go Wendy Go!!!!
Take care
Nickyxx
Actually i think our cancer (HCL) is a form of cll not hodgkins Wendy. That was what i was told anyway when i was diagnosed.Oh yes and if you was going shopping for cancer this is the cream of all cancers the very best one to own. Now doesn't that make you feel special. This is what my Onc told me he he but i only heard the cancer bit and not the rest. So as you can see not as rare as you thought huh!
Well done on your new job hope it works out really good, oh who are we fooling your going to rock the joint. Go get em girl!!
....Bobby....
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There is no road to happiness!! Happiness IS the road
Hello, have just spent ages reading thru all the hairy posts - Nicky told me about this site, and Hey,Bobby!! wondered where you'd gone... nice to see you're still cracking those old piano jokes, my fave is still the Morecambe and Wise "I'm playing all the right notes, but not necessarily in the right order" directed at Andre Previn I think.
Fascinating how everyone's HCL story can be so different - some sail thru the treatment (like lucky old me), others get complications that can be very drastic. The big thing that helped me was the realisation that HCL is a chronic -slowly-developing leukaemia, and if you gotta pick one, pick HCL.
I've just hit the magic five years remission - looking back, it hasn't stopped me doing anything, although I did retire from work a couple of years ago when I was offered a decent deal, and I never wanted to work till or beyond sixty anyway.
All the best, Frank.
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All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.
About time we had some class on this site.Welcome Frank
Frank dear boy how the bloody hell are you. The reason HCL was so easy for you mate was your taste in long walks in the English countryside. You simply got it lost and it never has found you again. I think you have stumbled on to a wonderful cure for our cancer he he well done on the five years remission I have got another year and a half to catch up on you yet but i will get there.
How have you been keeping? My daughters wedding went off a treat. Great speech By Daddy felt sorry for everyone i blabbed for ages he he
keep well
....Bobby....l
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There is no road to happiness!! Happiness IS the road
Hi Boys,
Hey....3 female and 3 male HCLers on here now...wonder what we will get next? Thought this HCL was supposed to be a man thing, no....don't answer that!
Have good weekends all, I'm off down the pub now....nice glass of Pinot Grigio waiting for me!
Nicky
Just got back from the hospital after 13th shot of pentostatin, feel a little groggy but feel better after reading the posts. I only have 2 to go so the end (of the treatment is in sight). I forgot to ask for my counts, I do not get hung up on counts when i feel fine (and i feel great )as i think they must be ok or i would feel ill and a rouge count can make you imagine things that simply are not there.
Me, Angie and the kids are off to Centre Parks (Nottingham) on Monday for a week and we can't wait.
I will let you allknow how we get on when we return.
Hi Wendy and everyone else. I'm Susie from Maryland in the good old US of A. I was diagnosed with HCL in May 2008 at the age of 44 and treated with Cladrbine in June 2008. I was diagnosed early and my treatment wasn't so bad. It's so good to see you all here!
How is your recovery progressing ? Its good to have fellow sufferers around you as you go through the healing process i thought. Its great to have you on board, welcome.
Just a quick Introduction in case you haven't read all the posts. I was diagnosed may 2005 had Cladribine for 5 days now in remission. Age 55, male, living in Perth West Australia.
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There is no road to happiness!! Happiness IS the road
Howdee, Bobby - the thing to remember about our marvellously prettty English/Scottish/Welsh countryside is... IT IS USUALLY SODDEN WET WITH ALL OUR RAIN. You're better off in Oz, Bobby - glad your daughter's wedding was a whizz, bet your speech was a classic!
Oh Nicky: who's counting up hairy men and women then? Ha! Don't spend too long in your local pub....
Cheers, Frank.
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All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.
Hi Susie,
I'm Roberta from the U.S. How low were your counts when the doctors treated you? I'm still waiting until my ANC count gets low enough for treatment. My doctor says that you can let the HCL progress until it makes your counts too abnormal. I was just curious about how far along your HCL was when you were treated. I'm glad that you made it through your treatment and didn't have a bad experience.
A man walks out to the street and manages to get a taxi just going by. He gets into the taxi, and the cabbie says,
'Perfect timing. You're just like Frank.'
Passenger: 'Who?'
Cabbie: 'Frank Feldman. He's a guy who did everything right all the time. Like my coming along when you needed a cab, things happened like that to Frank Feldman every single time.'
Passenger: 'There are always a few clouds over everybody.'
Cabbie: 'Not Frank Feldman. He was a terrific athlete. He could have won the Grand-Slam at tennis. He could golf with the pros. He sang like an opera baritone and danced like a Broadway star and you should have heard him play the piano. He was an amazing guy.'
Passenger: 'Sounds like he was something really special.'
Cabbie: 'There's more... He had a memory like a computer. Could remember everybody's birthday. He knew all about wine, which foods to order and which fork to eat them with. He could fix anything. Not like me. I change a fuse, and the whole street blacks out. But Frank Feldman, he could do everything right.'
Passenger: 'Wow, some guy then.'
Cabbie: 'He always knew the quickest way to go in traffic and avoid traffic jams. Not like me, I always seem to get stuck in them. But Frank, he never made a mistake, and he really knew how to treat a woman and make her feel good. He would never answer her back even if she was in the wrong and his clothing was always immaculate, shoes highly polished too. He was the perfect man! He never made a mistake. No one could ever measure up to Frank Feldman.'
Passenger: 'An amazing fellow. How did you meet him?'
Cabbie: 'Well, I never actually met Frank, he died 2 years ago. I just married his f#%&ing widow.'
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There is no road to happiness!! Happiness IS the road
its good to see a new forum and some of the old names and many new ones, my story for those who dont know is i was diagnosed in 1999 treated with pentastatin and HCL came back in 2001, treated agaon with Pentastatin and ive now been in remission for 8 yrs. and im feeling great, the only time i feel bad is just before my yearly blood test. in that time i have been a volunteer for leukaemiacare and have spoken to mmany people diagnosed with HCL so dont hesitate to ask questions of me, i am always glad to help.
regards to you all
Richard
Hi Jenny: Nice to hear you are keeping well... long time no hear, etc. We're all coming out of the woodwork lately, eh? and there's even been quite a bit of hairy cell activity on the LeukaemiaCARE site... stay chirpy.. good to see richard still enjoys the odd pint of beer, me too.
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All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.
Offline
I'm sorry that I never heard of this variety of leukemia before, but I just want to wish you the best of luck with your treatment, and with beating this. How are you feeling? It looks from your photo like you have some loving support - and that is very important. lots of love, xxxx Penny
Penny
Hello Penny
HCL is a form of non hodgkins. It is pretty rare - I am told. I'm in remission but struggling. I cannot be cured. I am struggling just waiting for it to return. It will return - it's just when. It is eating me away. My confidence has plummeted and I guess I just needed to hear someone say 'I had that and I understand'.
Thanks for your kind words - I do have support and know I am lucky to have this.
Hope you are well.
Wendy x
Hello,
I don't have HCL but i know how it feels. I think the one thing I learnt is that you can't let cancer rule your life. I mean look outside-- there is a world out there- the cancer could come back but before then you could get hit by a bus.
I had lukemia when i was little- about 4. I was told it was 99% sure that i would get cancer again- im 18 now and I've got cancer again.
Its really hard, it feels like a timebomb is going to explode and ruin your life again at anytime. I guess in the end you have to look at it as you just have to make the most out of everyday. I mean life doesn't stop so go out and enjoy it! If you need anything feel free to PM.
You can do it!
Squif xx
--- Smile, smiling is the key to happiness!!
Squif
I appreciate your kind words. The timebomb analogy is spot on. I can hear it ticking all the time. But I cannot see how long I've got. If I use my head I know I have to live my life - I know a bus could take me just as easily. I'm sure you know its not that simple. I am afraid to let my guard down.
I am not happy at work and think I need to make this change. I have only been back to work for 6 months though. I don't want to give up too soon. I would hate to fall ill again and think - what a waste. I should have done this and that.
You are very brave to have coped from being so you young when first diagnosed. I wish I had your strength.
You take care and thank you for being so kind.
Wendy x
It was good to read your blog and im sorry to hear about your diagnosis being terminal. It sucks doesn't it??? Me too. I hope that you get a response from a fellow sufferer, my cancer is breast. Anyway thought i'd say i have just began the process of retiring on the grounds of ill health. If you have a pension it could be worth your while looking at his option. Send me a PM for further info if you like. Welcome to the site. Jools x
Hi Wendy,
I've only just found this site! I too have HCL - I got it in 2003 and had treatment with 2cda (cladribine) - I guess you did too. Anyway I am perfectly healthy and go for checks every 8 months or so. As you know HCL will come back and dealing with this is quite hard, but in time you will learn to relax more and not panic everytime you get a cold and think oh god its coming back! But it is not TERMINAL. It is a chronic condition as in it is a very slow thing, and even when it does come back that won't be it....you will just have to be treated again, and then it will go away again. There also new treatments being worked on BL22 for instance, so it really is not a gloomy picture for us - my doc has told me I should live a life as long as anyone else unless as you say you get run over by a bus or have a heart attack! Also if cladribine doesn't work for you long term, there are already other options to try ...like Pentostatin.
I think the scariest thing is knowing you have leukaemia!!! I think its the word that just terrifies you, but really we are so lucky to have this type - you can live with it and have a completely normal life.
What it has done for me, is to appreicate things in life and not waste time with petty things, you realise that having 'things' really don't mean much if you don't have your health...its been a real shake up...but in a good way. So if you are not happy at work ...go for it and change your job and do something that makes you happy.
How did your treatment go? Again we are lucky in taking chemo...hair didn't drop out!
I know quite a few people here who have HCL - we talk on the Leukaemia Care site...although people don't tend to visit unless there is anything to report, but we keep each informed as to how we are. Also try this site www.network54.com/Forum/263810 it is the States and there are people from all over the world on there, actually its quite informative and you can ask questions about your condition/treatment - there are some very knowledgable people on there (not medical) ...try it!
I see you haven't logged on since May, so I hope you get this, you must feel very alone in not finding anyone else with this odd HCL!!! Hope to hear from you,
Nicky.
Hello Nicky
It's great to actually meet someone with HCL. especially when you are so positive. However some of the things you have said are a little confusing as my experiences so far (and my personal outlook) are somewhat different.
I also had Cladribine but it did not go so well. Following intavenous and sub cut treatment I became very poorly and spent 3 months in hospital. 1 month of which in intensive care. Things did get bad. My body started shutting down and I reacted to everything - even the plasma transfusion. My consultant was wonderful and she said I'd had it particularly hard - they even took photos of me and sent them off around the country for help. My skin rashes were shocking. My lungs reacted and i was incubated for a while. My body swelled so i could not move my limbs nor open my eyes. My liver was pickled and my temps were shocking. I was having the shakes when my temps spiked and it was frieghtening. I think the worst thing was the isolation. I was alone and could not even touch my family. They had to wear masks and gloves. I was torn up with the need for their love which was kept away from me becasue of risk of infections. I cannot tell what what that's done to me. I am so clingy now. Constantly need physical contact and cannot be on my own. Then when I started picking up they started Pentostatin - and i did loose my hair. Mainly it thinned but i was pulling out chunks so stopped brushing it.
I know it's not classed as terminal - but we cannot be cured and when your husband is called in to see you several times on the basis they thought I was leaving this world...I know it is capable of killing me. I have to say it's had a bloody good go at trying to take me so I consider any risk of it returning just as life threatening as a terminal diagnosis. Not being cured is too frightening. My last bone marrow aspiration showed signs of HCL. I cannot cope with knowing its still there. I wish I was as positive as you but it's still too raw. You say a nornal life is possible - but my normal has gone - my confidence, my independence and my future is no longer in my control. I had been brought up to work hard - everything was in my grasp - I can be whatever I want to be. I can make the difference. I guess with this situation it's not in my control.
I am doing something about my job - and I thank you for that. You made me think its simple than I thought. Wish me luck, I have an interview on Monday. I am nervous.
I know I need to deal with this better. I do think I appreciate the important things more now - my husband and family are these things. But I have just not got past the fear. The thing is my Dad died from Cancer the year I was diagnosed. I miss him desperately. I feel guilty that I survived and I'm still not happy!
I will definately look at the Leukaemia Care site and hope some of your positivity will rub off on me. I appreciate your encouragement.
Thanks again
Wendy x
Hah! There you are Wendy, I've been checking daily ....I was just hating the fact that you were thinking you were all alone out there. Fear not...we are here for you! I was quite lucky to have found the American and Leukaemia Care site before I needed treatment so was getting lots of advice from fellow HCLers. So straight away I didn't feel alone, when you are told you have something rare it makes it sound even more scary. Some haemo/consultants have never had to deal with a case!
Now what you went through sounded really awful and is not the norm. I did have some problems in that they think I was allergic to septra/antibiotics which messed things up a bit and I had a fever, colourful rash (all came to have a look!) and awful swelling (wouldn't have recognised me...and not attractive!!), high heart rate/low blood pressure, and yes they had to call my other half in to hospital late at night. The consultant from Intensive Care was called down but she said there was nothing she could do....thanks! Your condition obviously was a lot worse. Do they know why it all went wrong? Its important to know that for next time. I wonder if you managed to complete the 2cda course? And I wonder why they put you on Pento so soon? There are so many questions, I wonder also if your consultant had treated HCL before? I can see now why you consider it to be life threatening.....another reason to find out what exactly went wrong, because if it was the 2cda that your body couldn't handle then they would have to look at other options for you, but if like me it was an allergy to one of the other drugs you were taking that started you off on a downward spiral then that needs looking at too. How often are you having bone marrow aspitrations? Are your blood counts OK at the moment? I always ask for details of my blood counts and log them so I can see what they are doing - a control thing I think!
All the nurses at Cheltenham Hospital were telling me when my counts went down to nothing and was neutropenic that the Doc would stop the 2cda (as they do with chemo for other cancer sufferers) but no, apparently not and they were gobsmacked when Doc said carry on giving it! HCLers counts are supposed to crash to kill off all the hairies, sadly it kills all the good cells too - bit of a bugger!!! And, yes the shakes are common - I had those too, the injections to stop them were so nice and welcome - wonderful feeeling when the shakes stopped! I too got my own room and wasn't allowed to have flowers...bizarre!
And, I know exactly what you mean about being clingy ..... since all this happened I have not wanted to go abroad on holiday, I just wanted to be at home with Andy and the dogs, I'm quite happy to visit family, but I have no inclination to leave the country! I am just so happy to be home and content. People often say gosh you haven't been away for years ..what you need is a break! Oh no I don't!!! But its hard to explain that to anyone else, the words come out but really they haven't got a clue what you mean.
But as you say your husband and family are what counts now. I was sorry to hear about your Dad, it so hurts doesn't it, but I'm sure he would want you to make the most of your life and be happy. You had a double whammy in losing your Dad and having the diagnosis, that would be hard for anyone...allow yourself some time to heal ..on both counts. Have you tried talking to the helpline here or at Leukaemia Care - they are very supportive I have heard.
Waid and Tim on the American site have loads more experience than me, Tim in particular has also had his problems...but they are so willing to share what they know. they have a really good understanding of HCL. It really does help to have contact...you just don't feel so alone, and even emailing and getting it off your chest helps (I feel that you have had it all trapped inside you) .... they have all been through treatment in different ways and can offer so much..... there are even people on there who have Hcl in their bodies but not sufficient to have treatment....and have gone for years on a watch and wait...not everyone needs treatment. There is a person called Lou who I think is now up to 16 years since his last treatment! It can take years to come back, do you know what percentage of hairies you have? The UK site is a lot quieter. But if you have a look at Nick's story, he could not get his head round having HCL, and now he has got married and has a new baby, finally he has chilled and felt more relaxed.
Why don't you cut and paste your email above and put it on the American site (just ignore the political strings!!!), I'm sure you will get lots of support, help and advice.
You said your future is no longer in your control........ OH YES IT IS!!!! Take control girl...you already made the first step today by going for your interview ...hey!!!! Doesn't matter what the outcome is ...you made that decision...good for you. I'm really pleased for you. Hope it went OK, might not have been exactly what you wanted but you got out there and went for it - brilliant. You say your 'normal' has gone, well you have been through an awful lot, but I'm sure you can come out the otherside...you just got a bit lost for a while - you will find your way again. Step by step (there's not many steps - honest!).
There is a good blog here: http://hcljournal.blogspot.com/ he also had his problems dealing with it, but his last blog says it all!
A lot of people do just sail through treatment, person I know in Lancs - Frank....he didn't have a single side effect - so it can go well.
Well I feel like I've just written a book - sorry! Your email was much more structured than mine, I ramble and jump all over the place so apologies again!
Any questions just fire them off...always here for you.
Nicky.
Don't waste your life waiting for this to come back
Hi Wendy just a quick hello to see if this is working if i have got it right (that would be a first he he) we can have a longer natter. I have been brought here by Nicky Clark (she says jump i say how high Marm) all the way from Robs site in America just to put your mind at rest. There is life after HCL you will be fine there is so much that can be done for us. although after chemo i found that i couldn't play the piano anymore but i remembered that i couldn't actualy play it before i was diognosed so that wasn't to bad. Anyhow don,t worry to much there are lots of us out here and we all have plenty of storys to tell you keep well
....Bobby....
There is no road to happiness!! Happiness IS the road
I was diagnosed in 1992 with HCL at the age of 28, i have had various treatments but i am still very much alive kicking (and sometimes screeming).
The longest i have been in remission for is 10 years. I am currently being treated with pentostatin and all is going very well, my counts are normal and the only time i do not feel well is after the chemo for a couple of days. Ihave had 12 of 15 cycles and these are given every two weeks.
I try and turn a negative into a positive- you will know what they are. I know there are down sides but these have to be overcome for the sake of our own sanity and others close to us.
HCL has not stopped me from acheiving any of my goals and if anything it has made me a better person.
I live in North Wales and i have yet to meet someone with our condition so we are unique.
All the very best and hope to hear from you,
Dave.
Nice to see you both on here!
Bobby - what a nice message you left for Wendy.....well done mate!!!
Dave - I used to live in Corwen and also Menai Bridge....you anywhere near there I wonder. Which hospital do you go to? You were very young to get HCL ...but hey great remission! Not much pento left to go now then, have you tried 2cda...wonder what you thought of the comparision?
A group off the Leukaemia Care site did meet up a couple of years ago...I wasn't able to go, but from memory Jenny, Frank and Richard and maybe ALan met in the New Forest for a weekend away....so contact is possible!! They are all doing fine now too.
Bye for now,
Nicky.
I was diagnosed 11 1/2 years ago and treated with 2-CDA for 7 days. I had a 10 year remission before I learned that it had come back. Part of me thought I'd be lucky enough not to get it back and the other part was waiting for the shoe to drop. I had been checked every 6 months, then once a year up until the Bone Marrow Biopsy confirmed what the blood tests hinted at.
Last year I had been on anxiety meds which left me extremely tired. I am a teacher and prepared my curriculum for the whole year in advance just in case I went into treatment. This wasn't an easy task to write substitute teacher notes for 180 school days. I was driven to get things done "just in case" it was time for treatment. One year went by and then another six months to the present time. I prepared all of the worksheets, wrote the lesson plans for this year again and I'm still waiting. My co-workers think I'm super organized. I think of it as being prepared for treatment. My ANC number was lowered to 1.1 and then started increasing as high as 1.6 and now I am 1.3 and waiting. I have a spreadsheet to chart my blood test results. I am saving it for "peace of mind" in case there is another relapse after my treatment. I will know how low my blood tests can go before I really feel tired.
I too was very ill after my chemo 11 1/2 years ago. I had a fever after chemo and had to be hospitalized for 11-14 days. I had pain and spasms in my legs that could only be relieved by sitting in water. I ended up getting a staff infection from the hospital, felt like a pin cushion from the hourly blood tests and dislocated my jaw from grinding my teeth. I tried to internalize my fear the first time because everyone else around me was falling apart. I don't think I will do that next time, it was too painful. I am however looking forward to getting the chemo over with and to be in remission to "get on with life". Over the years we got a hot tub which I plan on using for me only. I don't want to have those leg spasms again! I seem to live in segments from blood test to blood test. The more time that goes by, the better I am learning to cope. I am trying to stay strong by working out at the gym 5 days a week. Some days I push through, other days I can't. I rest when I'm tired and push myself when I'm feeling good. I sometimes wonder if that pushing gets me in my tired rut.
I've learned that some days unless someone asks me how I feel, I forget that I have HCL. I found that the anti-anxiety drugs make me feel worse. When I took them I felt like I drank too much Nyquil (cold medicine that makes one groggy). I've had many attitude readjustments. I've been through sad emotions, mad emotions and glad emotions. I try to look at the positive because I wasn't living life in the "waiting pattern". HCL is chronic where it takes a long time for it to interfere enough for treatment. HCL can be treated and there are more drugs that have been tested and used for treatment. I do believe that it was a process that took me to the point where I am now. It has been quite an experience and is just part of my life now. I can let it get me down, or I can move ahead. I do wish you the best of luck, and days of good health that turn into years of good health.
Hi Nicky,
i live in Penrhyn Bay near Llandudno.
I go to Glan Clwyd Hos Near Abergele. I have had cladrabine and this gave the longest remission and i had no side effects but it was not available due to a world shortage. It should we have been told be available again soon but i could not wait from April up untill the end of this year- the hairies were too much! I tolerated the cladrabine much better than the pento and the treatment was over a lot faster. But on reading peoples stories we are all different in the way we are effected by each treatment.
I have a bike (motor) and go to Corwen regular and to Bala to drink coffee at the side of the road with my wife- great times in a lovely part of the world.
Speak to you soon,
Dave.
Hi Dave,
Ah, so envious...you are in a lovely part of the country. I was thinking you might have gone to Ysbuty Gwynedd, but obviously Abergele is nearer! There is a Prof Cawley in Liverpool who is bening funded by Leukaemia Care (if memory serves) and he is researching HCL.....come on man!!! I used to go to Ysgol y Berwyn in Bala a long time ago....I'd love to visit again one day.
Do you just pass trhough Corwen on your way to Bala I wonder??? When we go to Anglesey we always do the A5 through Langollen and Corwen and Betws y Coed ...its longer but so beautiful. Sometimes I stop in Corwen for a coffee, near NatWest Bank, my Dad used to work there, always look to see if I can spot someone I used to know, but its so long ago now since I was there!
Isn't it wierd how everyone reacts differently with treatment....now that you've been on Rob's site...you can see how everyone is so different, I wonder why that is.
Anyway
All the best, take care
Nciky
Great to hear from you, I guess Wendy doesn't sign in that often - but no doubt we shall hear form her again soon. Gosh, that's a really great remission you have had, I hope I shall reach 5 years....no particular reason for 5 - just sounded good when I embarked on this journey! It is satisfying though to keep a chart of counts and know you are on the level path (equally though must be worrying to see your counts go down).. Those anxiety meds sound awful !! I couldn't cope with being even more tired! Its funny how we have good and bad days, I'm going through a tired stage at the moment and find a nap works wonders (although tricky when at work!) but some times I don't have a choice when sheer exhaustion hits for no reason and the only thing to do is lie down, I can't even sit up when it happens and out like a light.
But other than the tiredness life does carry on pretty normally really - are we the first 'HCLers' you have talked with? Although in 10 years you must have come across someone? Two colleagues of mine both know of people who have been diagnosed with HCL, and I have been in touch with one.
Hope you will keep checking in, and let us know how your counts hold up are you planning on 2cda again this time?
Regards
Nicky.
Hi Nicky,
I actually found this site from your posting on Rob's American site. I signed up there about 1 1/2 years ago when I learned my leukemia was back. It is really good because I learned about some of the new treatments that are available now. It is great to hear the feedback from others who have tried different medications. I used to go on the site a lot and then I became too obsessed with my counts. I was always in HCL mode. I was getting down and took a break from it. In fact, I couldn't remember my password to get back on. I do go on Rob's site (without signing in) just see if there is anything that I could add. WAID is very knowledgable and he does a great job explaining. I saw your posting which led me to this site.
I am waiting for my counts to get to the point when I can have treatment. I just want to get it over with and hopefully go back into remission. The plan right now is to have a second treatment of 2cda since I was able to maintain a 10 year remission. I am interested in getting the medicine by injection for 5 days instead of having to wear the chemo cassette pack with the pic line for 7 days. I've been interested to read about those that have had 2cda by injection. I haven't seen any posts about it. I haven't personally met anyone that has HCL.
One thing I've noticed is the different ways of spelling leukemia. I kept trying to type in the web address and it wouldn't connect until I changed my spelling.
Do you find that some people in your life forget that you have leukemia because you can have really good days? When I feel good, I keep moving. I also have the days when I know that coffee will not help me "wake up" at all. If I were to describe the fatigue, I would say being so tired that you just want to cry. It can come on for me really quickly. I have learned how to plan my energy. If I get up first thing and go to the gym, I won't be able to sustain my energy. It is comforting to hear other non HCL people complain about being tired because then I know it isn't just me. Sometimes I can worry myself needlessly.
If anyone is looking for more information, I encourage you to check out this site http://www.network54.com/Forum/263810/
This site is helpful to understand blood counts http://www.cc.nih.gov/ccc/patient_education/pepubs/cbc97.pdf
Roberta
Hi Roberta
I was wondering if you had considered having the 2cda over 5 days. You have it for an hour(well they say an hour but i never got out under two)every day for 5 days. I had HCL in MAY 2005 and am in remission . I think there are a few on Robs site that had it this way. I suppose the injection method would be easier still, but i thought i would put my two penny worth in for your consideration.
The only person i have heard that had the injection method was Peter UK on Robs site.
Keep well
....Bobby....
There is no road to happiness!! Happiness IS the road
Hi Nicky,
It was luck i went to Ysbuty Glan Clwyd as when my GP got the original blood counts back when i was 1st diagnosed (I lived in Conwy at the time) the place to go was to Glan Clwyd as a doctor Edwards was there who had a good reputation. Dr Edwards has since moved to Ysbuty Gwynedd and for me this is a shame as he was realy good.
I work as a contracts manager for a building company and a job we are working on in Llanduno, the architect's wife works in the heamotology ward at Liverpool Royal where Prof Cawley is based. I have spoke to my GP and he will refer me to Prof Cawley as Pro Cawley has said that he would like to see me but needs a referal. It just seemed to good a opertunity to pass up as after all he is a expert in HCL. I will keep you informed.
I usually pass through Corwen but i will stop next time and try to find 'your coffee shop'- mind you the weather is getting cold so our rides out will be less frequent- shamed to say but I am a fair wether rider!
The vey best to you,
Dave.
Hi Bobby,
Yes, I was considering having the 5 daily injections of 2cda. Did it make you feel sick after receiving a stronger dose over 5 days? Were you able to drive yourself to and from treatments? I don't want to have the 7day treatment attached to a pic line and dose dispensing cassette. I didn't know if a stronger dose of 2cda over less time would cause more nausea or not. I'm considering my options for when the ANC number reaches the treatment level. Until then it is just monitor and wait.
Roberta
Hi Roberta
I was always driven to the hospital to have the chemo either by my wife or a friend but i always felt fine afterwards and could easily have driven i,m just a lazy sod.
I had a canula put into my hand (which i got to keep for three days after that they put a new one in so the whole five day treatment i had two canulas) sat in a nice comfy chair in the chemo suite that we have in our hospital while the drug slowly dripped into the canula. Then the drip was taken out flushed and i was on my way home.
I had no reaction to the stronger dose at all and the whole 5 days was very easy. Of course i had all the fever problems a couple of weeks later once the drug started to kick in but Waid told me (God she is an angle) that it was a good sign that the Hairy's were being clobbered .
....Bobby....
There is no road to happiness!! Happiness IS the road
Thanks for your reply!
I wouldn't be in too much of a rush to get treatment over and done with ...the longer you can go the better really....you want as few treatments overall as possible...so strech 'em out! I had a picc line last time and had my treatments over 6 weeks...ie once a week...must say it was brilliant in that I would drive myself to hospital have the 2cda go home and take the dogs for a walk! This all worked fine until things went pearshaped - they reckon I was allergic to the septrin (I think it was called) Doc wants me to have over a week next time and will have to go in to hospital for the week. And actually, if I hadn't of had that picc line I would have looked like a pin cushion! They were sticking all sorts of things in via it!
I really NEED to see my haemotologist regularly....I need to hear him say ..you're fine, off you go for another six months. It gives me the confidence to go the next six months, it is perhaps living 'by appointment' but it works for me, I don't see it as a pain to have to go for the check ups, I look forward to them!
Yes my family and others totally forget I have leukaemia.... and I think it is the Americans that spell leukaemia differntly to us.
The old tiredness is a strange thing isn't it.....obviously there are quite a few of us who have it, but my Haemo man says nothing to do with HCL and GP puts it down to HCL. So stalemate! But it must be something to do with HCL, we'll just have to work round it, and you are so right in that sometimes it hits really quickly, I can be sitting at my desk absolutely fine, and the next minute I have no choice but to have a sleep. I also find if my usual routine is changed it can floor me.
All in all though, I am functioning fine, and just recently I saw a friend not seen for years, she said you don't look as if you've had a days illness in your life....guess I was quite pleased and proud of that.....HCL....stuff you!!! YES!!
Take care
Nicky.
Blimey thats a conicidence and a small world! ....lucky you, do let us know how you get on with Prof Cawley. He treated Frank from Lancs on the once a week for 6 weeks regime, (or it could have been 7 I can't quite recall now) although he didn't invent the weekly system, I think he was one of the first to try it. I think it has now been proved though that it really doesn't make much difference to the outcome. It would be interesting to know what he is researching into exactly at the moment and what he thinks the future holds....they must crack this one day!
Pleased to hear you are a fair weather rider.....blimey a sensible man!....few and far between!
See ya!
Nicky.
I am gob smacked - where have you all come from? I'm not sure I can express properly what this feels like. I've felt so alone for so long. Then you all appear. You've been there too. My jaw is literally hanging open. I feel relief that there are other people out there - who are getting on with HCL. To hear so many long remission periods is re-assuring too. I guess 'rare' does not have to mean 'alone'.
Nicky - I owe you a special thank you. You have been so kind to bring people to me. You must know how important this is to me. Thank you seems inadequate
Nicky you are right - I need to know more about what happened last time. I was just in a hurry to get away. The thing is my consultant has retired and I will meet my new one for the first time in December. I hope they can look back. I understood the chnage to Pentostatin was cos they thought my reaction could have been to the cladribine. I had the Cladribine, intravenously, weekly for about 3 weeks. then one week subcut. Then I was hospitalised, after the 3 months in hospital they restarted treatment with a 'Groshong' line (not sure of spelling) cos my viens just went AWOL. I think knowing more will prepare me - I will ask. I last had a blood count in May - too embarassed to ask GP for another test before December. I have been feeling awfly tired recently and bruising a bit. However I think I have been down. I know I should not be embassed but I am! You seem so 'in charge' of your HCL. I have not been - but I am going to get in charge. I remember being told there were still cells present in my last bone marrow test - but 'at a level not to worry about'. I think the fact is - any level worries me. I need to ask what that level was. So when another test comes around I have a benchmark.
Some good news! I have found the courage to leave my job and I have got the job I went for. Thanks for helping me build my confidence. Handing in my notice tomorrow - arghh. Wish me luck!
Need to read all the messages again - still stunned!
Thanks everyone
Wendy x
...of your posting on the forum wish you strength and love; my husband's cancer, myeloma, isn't all that rare unfortunately, but most people still haven't heard of it and it is really hard to have to explain each time. And it's 'hidden' like yours - most of us don't have to think about what is going on inside our bodies and don't want to, but it's something that cancer does in a very sneaky way.
Anyway, even though I hadn't replied until now because I couldn't give you any information, I'm so glad you are feeling stronger and less alone - that is good news in itself!
So please remember that all those many readers will be wishing you well even if they don't always reply. Took me ages of lurking before I ever got up the courage.
Best wishes, Clarity.
Hah! I was hoping you'd have a nice surprise when you came on here next, the number of replies has rocketed from the very sad 6 when I first joined! Mind you it will take you half an hour to plough though all of the above...think I've had a case of verbal dioreaha (can never spell that!!) . I still think you went through a nightmare time, but that doesn't mean it will be the same next time at all. The very fact that you are on 6 monthly checks is GOOD, this means they they think your counts are fine, you would be in getting your counts a lot more frequently if your counts were poor.
But actually if you are feeling vulnerable ...then it may help to monitor your counts so that you can actually see they are fine - doesn't work for everyone as Roberta said above ..she was obsessing over her counts. Me, I like to seee 'em in black and white! Equally I wouldn't hesitate in getting a blood test if I'm not feeling right...just ring the surgery say you are not feeling right and would like a blood test....simple as that....I would see the nurse at the surgery then having spoken to doc.
Otherwise you'll do your head in worrying if you are OK or not! I am feeling awfully tired at the moment too...its a right pain isn't it...I can always drag myself out to the pub at the weekend though!
It is scarey to think there are still hairy cells lurking but they take so long to take over and force treatment ...you can still carry on in the meantime...try not to think about the hairy buggers!!! Or think of them as hairy buggers - make fun of them, and don't think of them as cancerous cells. You can live with these hairy buggers! Hust think if we can go as long as Roberta's 10 years...you will have spend that 10 years worrying unessarily.
Have you had your flu jab yet???? Got mine next week.
Don't forget to ask your new consultant if he/she has treated ANY cases of HCL before.....if they haven't , ask to be referred to someone who has. Also when you ask for the details of what happened, having a new consultant will be a lot easier and less emotional than if you were discussing it with the old consultant, it will be like the new one reading you a report. Take a notepad with you with ready prepared questions ...will make you look very efficient!!! And, will be a good start with the new consultant! I'm SO BOSSY!!!!!!! Hope this is coming across right and doesn't sound like I am dictating what you should do argh!!!!
Hey!!! What a result with the job...you must be chuffed to bits...what will you be doing?
By the way, did you take a tablet called septra or septrin before going in for treatment, I had it and it was taken about twice a week for a few weeks before going in ....my memory is bad now, I think it was to prevent getting pneumonia? I have noticed on Rob's site that a growing number of people have experienced problems and docs are putting it down to this drug not 2cda, my doc thought the same...might be worth a mention if you took it?
Well I've managed to blab on for ages again, ooops! Have you niticed that when you are doing an email in comment box, it is only very short and then when you press POST - up it pops and it is absolutley miles long argh!!!
Go Wendy Go!!!!
Take care
Nickyxx
Actually i think our cancer (HCL) is a form of cll not hodgkins Wendy. That was what i was told anyway when i was diagnosed.Oh yes and if you was going shopping for cancer this is the cream of all cancers the very best one to own. Now doesn't that make you feel special. This is what my Onc told me he he but i only heard the cancer bit and not the rest. So as you can see not as rare as you thought huh!
Well done on your new job hope it works out really good, oh who are we fooling your going to rock the joint. Go get em girl!!
....Bobby....
There is no road to happiness!! Happiness IS the road
Hello, have just spent ages reading thru all the hairy posts - Nicky told me about this site, and Hey,Bobby!! wondered where you'd gone... nice to see you're still cracking those old piano jokes, my fave is still the Morecambe and Wise "I'm playing all the right notes, but not necessarily in the right order" directed at Andre Previn I think.
Fascinating how everyone's HCL story can be so different - some sail thru the treatment (like lucky old me), others get complications that can be very drastic. The big thing that helped me was the realisation that HCL is a chronic -slowly-developing leukaemia, and if you gotta pick one, pick HCL.
I've just hit the magic five years remission - looking back, it hasn't stopped me doing anything, although I did retire from work a couple of years ago when I was offered a decent deal, and I never wanted to work till or beyond sixty anyway.
All the best, Frank.
All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.
this is just a quick test to see if my pen is working
There is no road to happiness!! Happiness IS the road
Frank dear boy how the bloody hell are you. The reason HCL was so easy for you mate was your taste in long walks in the English countryside. You simply got it lost and it never has found you again. I think you have stumbled on to a wonderful cure for our cancer he he well done on the five years remission I have got another year and a half to catch up on you yet but i will get there.
How have you been keeping? My daughters wedding went off a treat. Great speech By Daddy felt sorry for everyone i blabbed for ages he he
keep well
....Bobby....l
There is no road to happiness!! Happiness IS the road
Hi Boys,
Hey....3 female and 3 male HCLers on here now...wonder what we will get next? Thought this HCL was supposed to be a man thing, no....don't answer that!
Have good weekends all, I'm off down the pub now....nice glass of Pinot Grigio waiting for me!
Nicky
Hi
Just got back from the hospital after 13th shot of pentostatin, feel a little groggy but feel better after reading the posts. I only have 2 to go so the end (of the treatment is in sight). I forgot to ask for my counts, I do not get hung up on counts when i feel fine (and i feel great )as i think they must be ok or i would feel ill and a rouge count can make you imagine things that simply are not there.
Me, Angie and the kids are off to Centre Parks (Nottingham) on Monday for a week and we can't wait.
I will let you allknow how we get on when we return.
Speak to you all soon,
Dave.
Hi Wendy and everyone else. I'm Susie from Maryland in the good old US of A. I was diagnosed with HCL in May 2008 at the age of 44 and treated with Cladrbine in June 2008. I was diagnosed early and my treatment wasn't so bad. It's so good to see you all here!
How is your recovery progressing ? Its good to have fellow sufferers around you as you go through the healing process i thought. Its great to have you on board, welcome.
Just a quick Introduction in case you haven't read all the posts. I was diagnosed may 2005 had Cladribine for 5 days now in remission. Age 55, male, living in Perth West Australia.
There is no road to happiness!! Happiness IS the road
Howdee, Bobby - the thing to remember about our marvellously prettty English/Scottish/Welsh countryside is... IT IS USUALLY SODDEN WET WITH ALL OUR RAIN. You're better off in Oz, Bobby - glad your daughter's wedding was a whizz, bet your speech was a classic!
Oh Nicky: who's counting up hairy men and women then? Ha! Don't spend too long in your local pub....
Cheers, Frank.
All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.
Hi Susie,
I'm Roberta from the U.S. How low were your counts when the doctors treated you? I'm still waiting until my ANC count gets low enough for treatment. My doctor says that you can let the HCL progress until it makes your counts too abnormal. I was just curious about how far along your HCL was when you were treated. I'm glad that you made it through your treatment and didn't have a bad experience.
Have you met Frank?
A man walks out to the street and manages to get a taxi just going by. He gets into the taxi, and the cabbie says,
'Perfect timing. You're just like Frank.'
Passenger: 'Who?'
Cabbie: 'Frank Feldman. He's a guy who did everything right all the time. Like my coming along when you needed a cab, things happened like that to Frank Feldman every single time.'
Passenger: 'There are always a few clouds over everybody.'
Cabbie: 'Not Frank Feldman. He was a terrific athlete. He could have won the Grand-Slam at tennis. He could golf with the pros. He sang like an opera baritone and danced like a Broadway star and you should have heard him play the piano. He was an amazing guy.'
Passenger: 'Sounds like he was something really special.'
Cabbie: 'There's more... He had a memory like a computer. Could remember everybody's birthday. He knew all about wine, which foods to order and which fork to eat them with. He could fix anything. Not like me. I change a fuse, and the whole street blacks out. But Frank Feldman, he could do everything right.'
Passenger: 'Wow, some guy then.'
Cabbie: 'He always knew the quickest way to go in traffic and avoid traffic jams. Not like me, I always seem to get stuck in them. But Frank, he never made a mistake, and he really knew how to treat a woman and make her feel good. He would never answer her back even if she was in the wrong and his clothing was always immaculate, shoes highly polished too. He was the perfect man! He never made a mistake. No one could ever measure up to Frank Feldman.'
Passenger: 'An amazing fellow. How did you meet him?'
Cabbie: 'Well, I never actually met Frank, he died 2 years ago. I just married his f#%&ing widow.'
There is no road to happiness!! Happiness IS the road
Bobby: I'm gonna copy that joke onto a mate of mine, also called Frank, heehee. Should amuse him.
All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.
its good to see a new forum and some of the old names and many new ones, my story for those who dont know is i was diagnosed in 1999 treated with pentastatin and HCL came back in 2001, treated agaon with Pentastatin and ive now been in remission for 8 yrs. and im feeling great, the only time i feel bad is just before my yearly blood test. in that time i have been a volunteer for leukaemiacare and have spoken to mmany people diagnosed with HCL so dont hesitate to ask questions of me, i am always glad to help.
regards to you all
Richard
Hello to Wendy
Richard,Frank, Bobby and Nicky we are getting around these days
Well as i last posted on LCare still doing fine - how long is it now!!! oh yes 9 years since i had pentostatin - glad to hear you are all doing fine
As above feel free to ask any questions
Jenny
Hi Jenny: Nice to hear you are keeping well... long time no hear, etc. We're all coming out of the woodwork lately, eh? and there's even been quite a bit of hairy cell activity on the LeukaemiaCARE site... stay chirpy.. good to see richard still enjoys the odd pint of beer, me too.
All the best, Frank. Keep taking the tablets, otherwise try a pint of beer.