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Is there life after cml?

I have been on the CML journey for 9 months now. I am doing well, keeping a very positive outlook and don't let it stop me from leading a full and active life. I went to Canada on my own to stay with friend for two weeks at the end of January and have since been twice to the Isle of Skye where I managaed to walk 2.5 miles up hill into the moor to visit a wind farm.

I read other peoples posts where they have been taking Glivec with zero results for long times - years in some cases. I am wondering if there will ever be a time where we will be CML and Glivec free?

I do imagine a time when I will be cured of CML. But, I do realise that it will be a long way off with many hurdles to overcome. Is the only hope of a cure through transplant? I do have a suitable donor in a brother but that is not being considered at the present moment. I also find that thought quite scary and admire the many people have been through this.

At the start I was quite scared of asking questions - I think I thought if I don't know what the problems or side effects are I won't imagine I have got them and that I would just meet every day head on. I do have CML days too where I feel very sorry for myself, weepy, tired and totally lethargic (but I know I take too much out of myself too).

Dear Flora,

My husband, Roy, was diagnosed in Jan 2002 so its been more than 6 years on this CML journey. I must say that things get better with time. The first year after diagnosis was the hardest, many weepy times. Then it got better. Now, we live normal lives except that he continues taking Glivec. Roy does have side-effects but they are manageable and he has continuously worked at his full-time job.

I also admit to you that sometimes we do get impatient for a drug cure to come because wouldn't it be easy not to have the worry of CML? But truthfully speaking, we believe that even a cure, whether a transplant or drug may still involve lifelong monitoring and risk of relapse. So, we try to be practical as much as we can and just live life.

Yes, the current therapy for a cure is transplant but it does have risks. Sandy and others did transplant only when they failed Glivec because of these risks.

Please don't worry, Roy also has CML days but less now than 6 years ago. He had a lot of fatigue the first year after diagnosis so be easy on yourself. Now, after 6 years, he is not that tired anymore.

Always ask questions and share your journey, this group is a good group to talk to and there is nothing like sharing similar experiences with others. What you are feeling is normal but hang in there.

Anjana
wife of Roy
d/x Jan 2002
400mg Gleevec
PCR 3.9log

Aged 80 when diagnosed I have been on Glivec for about 10 weeks. The first four weeks all went well, especially blood count-wise. But then I started to develop a very nasty itchy rash on my arms and chest. My GP prescribed skin creams, one of which can cause allergies. I put up with it for three weeks and then went to see my haemotologist who has taken me off Glivec for a week and precribed 15mg daily prednisolone. I go back for a review tomorrow.
What I would like to know is peoples' experience - whether these symptoms imrove over time, get worse or stay stable. If they do't get better and I cannot cope any more I suppose the alternative is to stop treatment, let the disease take its course, and live on with deteriorating health for perhaps another year.
Any helpful comments very welcome. Bill Lubbock

Hi Bill. Do not despair, I am sure you will be able to get this rash sorted. My husband was diagnosed in Feb 2007 and after about a month developed a dreadful rash all over his body arms legs face, the lot. He was very red, sore, itchy and swollen. He tried every cream going and the only medicine that gave any relief was prednisolone, however as soon as the course of medication stopped the rash reappeared, also had skin tests done. In the end the decision was taken that he would come off Glivec and have Dasatanib instead because he was intolerant to Glivec, in fact his onc. said he had never seen such a bad rash! Dasatanib has been great, Brian started taking it in November 2007 so he had put up with the rash for eight months and skin returned back to normal immediately, he did have a fortnight break between the two drugs. He still experiences tiredness and a constantly upset stomach and aches and pains, all bearable though. The rash was truly something else! Brian is 65 this summer.
I am sure there will be an answer and you will be feeling better soon.
All the very best
Chris

Dear Bill,

I know quite a few patients like Chris' husband. For some of my friends, the Gleevec rash was taken care of by Prednisolone never to return. If it does return, I know patients who had rash on Gleevec to the extent they were intolerant and then went on to Sprycel (Dasatinib) and were just fine.

Please do not give up treatment just because of your age. There are drugs out there which will take care of your rash problem. Don't ever give up.

Anjana
wife of Roy
d/x Jan 2002
400mg Gleevec
PCR 3.9log

Dear Bill, as Anjana says do not give up because of this side effect or your age!!. It may well be that your weeks break from Glivec will do the trick and the rash will not come back. With some people it does prove to be an ongoing and intolerable side effect but not in everyone. I had the same sort of rash at one point in my treatment with Glivec but it was controled by a short course of steroid cream and never came back.
Please do not think that this is insurmountable and that the only other course open to you is to stop treatment. dasatinib (Sprycel) is a very good alternative therapy and the small number of people that do not respond to Glivec have found this drug to be a good alternative.
There is also another drug called Tasigna, which is about to come out of trial in April. This is also a very potent drug and deals with CML equally well. Both these alternative drugs have their own side effects but none of them are the same and all are pretty managable.
Remember each of us is an individual and we all respond in individual ways. Keep your positive attitude to the forefront Bill and know that we are here to help and give support should you need it.

best wishes,
Sandy

Hi Flora,
I would say that yes there is life after CML.... just look at this discussion board. Maybe a cure is not as near as any of us would like, but remember that Glivec has had an unprecendented effect on the prognosis for CML with over 90% of newly diagnosed holding their responses for 6 years and counting. I think that once diagnosed with a life-threatening illness it changes our outlook forever and as Anjana says... even those like me who have had transplants still have to be monitored... probably for life.
My form of transplant was (and still is) much easier to tolerate than the traditional method and at a later date you may want to consider it given that you have a sibling donor. I must say it is liberating not to have to take daily drug therapy, but I still have CML days too... even though there are no longer any cells with the PH chromosome left in my marrow... or at least none that are visible!
'Cure' is a difficult word .... when you think about the fact that there is a percentage of the population that would test positive for bcr/abl but never go on to develop CML, it is clear that CML (and cancer in general) is not yet fully understood. So I would advise that all any of us can do is like you, to take each day head on and to live each day as we would like to, trying hard not to be overwhelmed by why's and what if's.
You seem to be doing this quite well already.
Best wishes,
Sandy ;o)

Thanks so much for your encouragement Anjan. I re-start Glivec next Tuesday and we shall see what happens. My immediate target is a Caribbean holiday on April 23rd. I'm goig on that, come what may!!! ... Bill

Thanks, Sandy,
It is a help to know that people do get over these set backs. Thank you very much for your response. .. Bill

Thanks Anjana. Its a big help to talk to someone who is not jut a doctor going through the procedures wihout eperiencing what the results are. .. Bill

Thanks, Chris. I will check out whether we can be prescribed Dasatanib in Surrey in case the rash returns after this lay-off with prednisone. I hope Brian continues OK. Bill

Or should it be Life with CML?

I guess that, like most people, I was pretty devastated when diagnosed three years ago, shortly after my retirement at 65 I was fairly active, playing tennis and golf but my main passion was private flying. I immediately lost my medical for flying but, after a month or so while I got established on Glivec, I was able to carry on with the tennis (I've given up golf because I am useless at it!). Once it was shown that I was responding well to Glivec (now in the zero club) my pilot's licence was restored and I have done far more flying than I ever did before. I've even bought a share in an aeroplane and am really enjoying it.

I do have some mild side effects from the Glivec, mainly involving my digestion system and, unless I drink lots of water, I also suffer from a little water retention. Many thanks to those on this forum who put me right on that one. The only other thing worth mentioning in case anyone else has this, my wife says that my BO has changed since I have been on Glivec. She says that, when I get really hot, I smell of rubber. Charming, I'm sure.

Other than remembering to take the pills, life is pretty normal. Actually, for the first time I've just run out but should be getting more tomorrow.