Appointment this week at Countess of Chester Hospital, where the (new) consultant has agreed to follow Prof Clarke's proposed protocol that we cut my imatinib from 400mg to 200mg. I will have monthly BCR-ABL to check for any progression, and see them again at CoC just before Christmas. My PCR-ABl has been undetectable since 2009. If it stays at zero for a year on 200mg we will then stop. I will keep the forum posted on progress.
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Imatinib Dose Reduction Starts
Good luck! I reduced more gradually - 300 mg for a year or more before going down to 200. I noticed an immediate reduction (but unfortunately not total disappearance) of cramps and tiredness, and hope you have similar benefits. I'm now on 4-monthly check-ups (next one in a couple of weeks), which also helps.
Good luck Alastair - DESTINY results so far are cause for optimism that you will succeed in both dose reduction and then going off completely. I have also been undetectable since late 2009 and went on Destiny in 2014. I finished Destiny in May - had a couple of blips in the results at one stage (which turned out not to be real) but other than that, with monthly testing for the first two years, then two monthly, I felt in safe hands. Reducing to 200mg immediately reduced side effects to more or less nothing. Richard
So 3 weeks into the reduced dose, it is a bit early to know much - my first blood test is 10 days away. However I've not had a significant attack of cramp, and the flatulence issue seems to be reduced. It hasn't helped that I started a cold at the same time as reducing the dose, and that lasted 10 days. Out walking the dog today, my wife commented I was walking faster than usual, and I walked straight up a hill where I have needed a rest half way up every time since we started doing this walk last year. Hadn't anticipated that impact, and makes it even more worth trying.
I, too, am on the reduced dose of Imatinib down from 400 to 300 mgs - and what a difference. I had a weight problem in that it just refused to budge despite gym, swimming walking,fitness classes etc etc. Now it's shifting. More energy, less puffing when walking up one of the many Devon hills around here. I went onto 300mgs in June and am still holding MR4 so pleased after my DESTINY failure on half dose.
Are you still holding remission on 200mgs, Olivia?
No, I'm back up to 300 mg as my last couple of PCRs showed a slight rise. I don't notice much difference in side effects, though I did have an eye bleed - very unusually for me - almost as soon as I went back to 300. Perhaps I can get back down again some time, I just hope I don't have to go back to 400 mg.
Thanks for asking!
Thank you very much for sharing your results. We are baby steps into Imatinib and we find this so encouaging that it can be done. We are having issues with side effects but still hoping that we don't have to change to another TKI. We will find out next week with our 3 months BCR-ABL1 results. A lower dosage sounds wonderful so congratulations.
Would you mind sharing with me when you started Imatinib?
Thanks, and all the best.
Tim and Michelle
Thanks for all good wishes.
David, the plan is to stay on 200mg for a total of 12 months (i.e. another 8 from now). Prof Clarke's protocol says to ignore any results less than 0.1% through this period. If all is good I will stop in September and continue to be tested monthly for the first 6 months.
Tim and Michelle, I started taking imatinib in the spring of 2007. Initially 400mg, but I have always had a very low wbc ( as I detailed on another thread recently) and I went down to 200 mg at the end of 2007 for about 6 months. PCR progress stalled so went back to 400mg and achieved log 3 in 18 months, and undetectable 3 months later.
by including a de-escalation (dose reduction) phase in the first year. The thinking behind this was, and still is, that most CML patients who respond well to TKI therapy (with molecular responses at 0.1% -MR3 - or lower) over the first few years of therapy, will be able to maintain a molecular response in spite of a dose reduction.
If most 'good responders' can successfully halve the recommended dose with out losing MR3 (0,1%), then there is now good evidence that side effects are diminished, with an improvement in quality of life.
DESTINY has had excellent results and It seems has proved that although the percentage of patients eligible to stop and achieve TFR is very small (between 15-20% of good responders), dose reduction represents a pragmatic and positive approach towards dealing with TKI side effects for the majority of patients who will need to continue with therapy over the longer term.
Wishing you well, and hope you will continue to maintain your MR over the coming months.
Best of Luck on your dosage reduction
My own CML history
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Hi folks, just back from the latest appointment at the hospital, now approaching 6 months into reduction from 400mg Imatinib to 200 mg.
BCR ABL Results
Prof Clarke's protocol from the trial says don't worry as long as results are less than 0.1%. So still a factor of 20 below any need to go back to 400mg. Was at a friend's 60th birthday party last week and danced till 2 a.m. Not sure I could have done that this time last year.
Best wishes to all.
I'm always slightly wary of a 0.000% ... could just mean the test was poor, and not very specific. Whereas a really low, but positive PCR strangely gives me more comfort in some ways. I once got a 0.000% but it was from 0.02 just before, and 0.02 immediately after. I suspect a clerical error and it was someone else's blood!
Good news Alastair.
I think dose reduction is shaping up to be the way to go for the majority of patients who have deep and stable PCR results. As you know L'pool has a lab with a sensitive PCR methodology, so the odd BCR/ABL1 transcript or two is probably insignificant. As you may or may not know, my PCR results were negative (0.00%) for some years post transplant... then when HH Lab set in place a more sensitive PCR test, suddenly I started seeing results with low positive transcripts. This has remained the case for the last 4 or so years with my results always stable at 0.002% - sometimes 0.001%. this number is very difficult to quantify, so I pay it no mind as it remains is a stable result.
I wish you well with your half dose regime - who knows you might be able to reduce even further. To me, low dose TKI treatment, wherever possible, is a far more realistic proposition than TFR for a majority with stable MR..... with dose reduction It seems that you can remain stable at MR3 (0.1%) or lower which means many more people (who are not good candidates for TFR) will be able to reduce their side effects and have a much better quality of life in the longer term.
In my view, until we understand the mechanisms behind why a minority of patients with stable deep molecular response (DMR) are able to stop therapy without losing their MR, dose reduction is a much more realistic goal.
Dawn, I have also been on Imatinib 400 for a year, began the day of my presumed diagnosis on April 7, 2017. Diagnosis was confirmed within a week or so after PCR test. My WBC was 280K so it was good that I got started right away from an inventory at our hospital pharmacy. I do share all those side effects you mention. It seems that I am able to sleep during the day by napping but not so well at night! Doctor recommends staying as active as I can and also yoga for the joint pain. I enjoy hiking but it does seem to take longer (several days) to recover from anything strenuous. (I am 55.) Yoga does seem to help, for both body and mind. Waiting for my 12 mo. PCR results any day now. Have not talked with doctor about reducing dose but I will ask at next visit in 3 months. Do you feel better on 300? Thank you and good luck. Justine
Hi Dawn & Justine.
Sandy knows more than I do but I can say the trials on dose reduction were based on people who had been taking imatinib longer than it seems you both have been. In around 1 year getting to below 0.1% BCR ABL or close to it is a good result, and most people I'm aware of who have reduced dose stabilised at those low levels for several years before trying to reduce. There is research which shows that different people on imatinib have large variations in blood concentration of the drug, for reasons we don't fully understand. For those who get a high blood level, dose reduction may be a good option. If you are having bad side effects you can ask your consultant to check your blood or serum level. Kings College developed a new way of doing this test a few years ago, but it is not widely used. I have posted a link on here before; if you can't find it let me know and I'll look it up.
Hope this helps
Dawn I've just read your reply to the thread on the conference and it sounds like you need to change something. Assuming you are UK based I suggest you ask your consultant to get your blood imatinib levels checked.Details of a test offered to NHS hospitals through King's College are on this link One of the tabs in the middle of the page gives a link to the request form. There was research published last year that shows that women seem to have a higher serum level of imatinib than men.There are reasons for this which are too complex for me to explain (and I have run a toxicology lab). If the side effects from imatinib are so severe and the level isn't too high perhaps a change of drug might be the way forward.
Thank you for your reply .I am in Nottingham + go to City hospital next week for bloods ect. will try to speak to doc then . I could cope with the days if I could sleep at night. my gp says he can't help me that any sleeping tabs. are addictive + don.t work for very long.
Feeling fed up ................ but 11 years + counting . They gave me 2 weeks gp wouldn't listen to me he thought my husband was beating me ! Anyway thankyou for being there for me. Dawn
Hi Dawn, good luck with the hospital. I think I've picked up something wrong about your CML journey - you've said 11 years and counting in this post, but above you said 400mg Imatinib for a year, which I though was when you were diagnosed. If you want to share your treatment history and current PCR level it might help people understand and share relevant experience.
Congrats on your reduction, I have a question I to have been reduced to 200mg of gleevec and have noticed a slight elevation in creatinine clearance in the blood tests, did you have any issues with changes in other blood tests when you dosage was lowered. I had been on gleevec 400mg for 7 years prior to being reduced and Bcr test has shown a slight increase over the last 6 months from 0.00% to 0.03%
I've not had any issues with other tests since I reduced, but I haven't looked at the creatinine numbers. I'm now seeing the registrar - I am threatening to send my consultant an invoice for training his staff on CML - but will have a look when I go back to see them next month. The consultant is still looking at the numbers, and if I wanted to see him or the results were gong the wrong way I would be seeing him very quickly. I will look at the creatinine numbers next month at my appointment and let you know if there is any change.
All, just back from my appointment, 9 months after reducing from 400mg Imatinib to 200mg.
So happily maintaining PCRU on 200mg. Appointment at end September and if this continues I will stop taking Imatinib and see if I am one of the lucky ones who can get to TFR.
Consultant was at a conference last week where he said there was an emerging consensus that dose reduction on TKIs and TFR was more likely to be successful the longer the patient has been in MMR.
Rich, sorry I forgot to look at the creatinine numbers!
This is terrific! Even if TFR isn't ultimately the result, to prove (at least for yet one more person) that reducing a TKI by half can still maintain an extremely low and safe level is AWESOME for all of us!