25 years ago this April and at the age of 45 I was diagnosed with CML. Now 70 years old and living a very normal life.
This one is for the newbies on here. Hopefully it might help.
Massive respect to the people who have helped out in any way on this site, you have been a godsend. You have educated and given every help possible to the readers. Thank you.
Dang! Thanks for understanding the impact your experience has on us, and checking in. By my calculations, you must have had some bad years on Interferon and then, clinical trials for imatinib?
Hi Kat, yes you’re right. Diagnosed 1994 with a peripheral stem cell autograph performed over Xmas and new year, including 7 weeks with chemo and isolation in a side ward. That failed, so went on interferon for 8 years. Then trials for STI571 - later to become Imatinib.
stayed stable for last 17 years or so.
The early years were very tough Tanya. Very tough.
I was discussing this with my consultant at Manchester Royal Infirmary a couple of weeks ago and she knows a number of patients from around the same era who are still doing very well, so I’m not a solitary case. They tell patients now that they can expect to live a normal life. Of course we shouldn’t forget that some people do face problems and we all think of them, but for most folk the future is good. The default med at MRI is Imatinib.
You’re welcome Tanya. Yes, I’ve been on Imatinib for 17 years.
Dennis,
What is your current status PCR status?
If you are undetected, have you thought about stopping treatment and test remission?
In your case, those who were first treated with Interferon and then with Imatinib have a much higher treatment free remission success rate. Much higher.
You should be able to stop therapy and be functionally cured. Something about Interferon 'first' which conditions CML for total destruction when followed with a TKI (notably Imatinib).
Dennis,
I have a theory - and it's just mine based on anecdotal evidence that the CML cells you have left are the normally resistant clone (sub-population) that imatinib does not eliminate very well (some, but not like the other clone). The residual population is so low that your immune system is keeping you just fine. It is possible that you could try cessaation and nothing will happen; you will remain MMR - especially after 17 years!. The initiating leukemic stem cells are likely exhausted.
Alternately - you could switch drugs to a very low dose dasatinib (20 mg). This would 'mop' up the residual.
(excellent science emerging that rotating TKI drugs can lead to treatment free remission easier)
Dennis, I'm right behind you here in the US. I was diagnosed 18 years ago at the age of 48. Gleevec had only been out a couple of months. I was going to have a stem cell transplant, but we decided to try gleevec. On gleevec for 10 years then switched to Sprycel for the past 8. Finally talked my Dr into reducing my dose from 100mg to 50mg last month. My BCR number is .0063. I'm going to try and talk my Dr into reducing to 20mg next month.
Tom
Dennis - I'm so curious - what was it like to be on interferon? They say it's like having the flu all the time, which sounds to me like imatinib! (At least for me - I never had one minute that I felt good on imatinib - always sick, nauseated, limp with fatigue, diarrhea, etc. for two years.) I had a dear friend who was on interferon for hepatitis and vascular cellulitis and I've never seen anyone dressed and upright that sick. She finally couldn't take it anymore - literally. As Scuba said, people with prior interferon treatment are finding it easier to be TKI-free, and there's the thought that maybe adding in interferon as part of our TKI regimens would be good, but I don't think it seems practical, since interferon is so hard on quality of life. What was it like?
Hi Scuba
To be honest, I think - and Manchester think - that for me, I might as well just continue on the one Imatinib tablet per day. It doesn’t cause me any problems and my PCR has been stable all along. If things change, then we would have to think again. Interesting theories though. I often wonder why things are the way they are myself.
Dennis,do you get used to being on Gleevec?I have had a hard time on it but will continue as long as I can.Mainly it’s ti do with fatigue and depression but vanity comes into it as well with hair loss and wrinkling of skin...Was going try Sprycel and did but hated how it made me feel..How blessed we are to have options.Do you think you will stay on Gleevec or give Sprycel a go and see if you can stop treatment?Keen to know and all the best.
Kat
I was on Interferon alpha. I self injected on Monday, Wed and Fri. I never understood why it was in that order and not just every other day. The injections were firstly in right upper abdomen then left UA, right lower abdomen, left LA, right thigh, left thigh. After doing that for 7/8 years it became a bit sore.
I don’t remember having the ‘flu effect. The main downside to Interferon was it was known as being very depressive. I was frequently asked by consultant if it was making me feel suicidal. It was quite a powerful drug obviously, but the patient also had to take into account that no one at that time knew if it actually achieved anything at all. They “thought” it could prolong things, but it was tough for the some of the folk that were on it.
Tanya
yes I will stay on Imatinib. For many years it did cause me stomach problems, including diarrhoea. 12 months ago I went into A&E with severe stomach pains and was told I had a stomach ulcer. At that point I started taking Omeprazole and I’ve had no problems since then at all. Whether the Imatinib had a cause on the ulcer, I don’t know. Lots of people of my age are on Omeprazole, is it worth enquiring about for yourself?
Dennis I have not had stomach problems just mental issues and hormonal ones.Think I will stick on it too.Having said that,my blood tests are not improving but because I tolerate Glivec better than Sprycel,Doc recommends sticking to it.You are a long term survivor of CML and that serves as great encouragement for the rest of us!Thanks again Dennis.
Dennis, Yes I had several side effects from 100mg of Sprycel. I had a much easier time with Gleevec, but it stopped working after 10 years. Terrible dreams all night long with 100mg Sprycel, no sleep, swollen ankles, ringing in my ears , etc. I can tell a big difference on 50mg. Sleep and energy and everything is much better. I feel 100% better. I am hoping I might be able to go to 20mg before too long.
Tom
