Hairy cell leukaemia

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....

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....

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.