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CML relapse

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hello everyone

Ive just joined in the hope of getting some advice as I'm at my wits end looking on the internet.

I don't really understand all the jargon and numbers but I will try my best.

I was diagnosed with CML in January 2016 and put on 400g imatininb in March 2016

I had blood test and hospital appointment every 3 months.

I went in knew the basics and every time was told thing were ok so had faith in my Doctors. The goal being to get me to 0% or below, which I assume was cytogenetic remission in 18 months which would have been October 2017.

In October 2017 my count was 1.002 not where they wanted it but it was going down. It had been sent to a different Lab so this n might be why ?

In January 2018 my blood test was messed up and I had to have another so a I didn't get the result.

I went to see the consultant last Tuesday 24th April (3 monthly) to be told my count in January had gone up to 1.728 and I had a relapse.

They were changing my TKI to Dasatinib. which I am to start in 2 weeks to give the Imatinib time to flush out my body. they could find no mutations so it was fingers crossed that Dasatinib would work.

I have not yet had my Blood result for April 16th as of yet.

Has anyone else had an experience like this, and what should I now be expecting from my CML and my Doctors ?

Thanks in advance for any help

Paul

Hi Paul,

I was switched from Imatinib to Dasatinib as you are doing now. First there is no reason to delay starting your new drug. Imatinib is gone from your body in a few days (half life = 18 hours). Research has even shown efficacy using two TKI's at the same time (mostly for other cancers that are being tested).

Regarding losing Imatinib response, many patients experience less than ideal response on the standard 400 mg Imatinib dose. Switching to Dasatinib was a good choice. You are likely to respond very well to Dasatinib.

My PCR test never got close to 1.0% on Imatinib. In addition, I was unable t tolerate the 400 mg dose due to myelosuppression  which forced a dose reduction. That led to a rising PCR. So imatinib was a failure. When I was switched to Dasatinib (70 mg starting dose), I had even worse myelosuppression initially and had to stop taking it. I was reduced to 20 mg (1/5 normal dose) and was able to stay on the drug with mild myelosuppression. To my doctors surprise, my PCR began to plummet below 1.0%. I achieved PCRU (undetected) last year and remained PCRU - on only 20 mg Dasatinib.

Dasatinib is a potent drug. You may find you do not need to take full dose to have excellent response. In the case of Dasatinib, more is not better.

Hi Paul, 

Just to add to Scuba's comment ... I switched from imatinib to dasatinib and was also given a 2 week "flush out" period. However, I switched because of side effects so they wanted to be certain that all the imatinib was eliminated before starting dasatinib - and more importantly to make sure that the side effects went away and thus proving they were caused by imatinib (they were).

David.

Thanks for the info Guys.

I had NO reactions to imatinib apart from fatigue that ive always had with CML'

They are starting me on 100mg daily dose of dasatinib.

My concern was the fact that the consultant said that they could find no mutation to target so were putting me on Dasatinib and it was fingers crossed ???

From your replies I assume that even though I did not reach below 1% this was not a cause for concern.

It just seem to me (after reading on the internet) that their reaction seemed a bit laid back after 18 - 24 months and its now rising....also the blood test cock ups.

Fingers crossed indeed....ah the science of it all !!!!

Paul

Update folks

Today i was told my bcr-able count for my blood test 2 weeks ago has gone down to 1.188 from January. Down but still a rising trend since Octobers 1.002 so still going onto Dasatinib 100,mg.

Got to be good news whatever i think.

Paul

Paul,

Dasatinib is a more potent TKI and works differently than Imatinib. Dasatinib targets higher order progenitor cells and when it works it will give a much deeper response than Imatinib.

My only concern is your starting dose. Your doctor should consider 70 mg to start and check your PCR after six weeks. If your trend is down, then you will have been spared some of the side effects of Dasatinib. Expect headaches for a day or two. They will subside. Also - you should have your blood counts tested weekly to verify no myelosuppression.  Dasatnib is a potent drug (especially at 100 mg). If your blood counts remain stable then PCR testing as per normal is fine.

I was started on 70 mg and then quickly dropped to 20 mg, where I have remained. I am PCRU on only 20 mg.

The hospital is checking me 4 weeks after I start Dasatinib 100mg.

If I feel unwell I will contact them beforehand, I did have to sign a consent form which the consultant had written myelosuppression, pleural effusion etc ?

Are there any symptoms I can look out for if I'm getting Myelosuppression.

I will also mention the dosage when I see him in a month, maybe they are starting me on that because my bcr-abl went up.

thanks for you advice its appreciated.

Hi again, 

It's hard to look out for symptoms of myelosuppression, but the obvious one is if you are bruising very easily (this would be low platelets).

I was on 100mg of dasatinib / Sprycel for a few years (70mg now, hoping to reduce to 50mg later today actually) and probably the main day to day issues I had were a bit of fatigue and stiff muscles. Good hydration and regular stretching really helped here and I got into some light yoga after a while which I really enjoy and would continue even if all the stiffness went away completely. 

In the first while, it's very easy and tempting to blame any physical problem on the medicine. Some days anyone might feel crappy, for no apparent reason and of course we have this too. Sometimes you wake up with a stiff neck, or have a bad headache. I'm not saying not to worry at all about side effects, but just to keep in the back of your mind that not everything is TKI related. Maybe it's just a headache. If you get a pattern of things, or persistent problems then it's worth investigating of course.

David. 

Hi Paul,

Glad you found this forum. Scuba and David have already given you some excellent advice and I hope your worries have been allayed. I would still question your doctors use of the word 'relapse' to describe the PCR result rise. Relapse is a very emotive word - at least in our CML world- so no wonder you were at your 'wits end'. This result should have been described more as a sub-optimal response to imatinib 400mg. The fact that there is no evidence of resistant mutations is good news. I agree that in your case - given you did not have a difficult side effect profile- you really do not need to 'flush out' imatinib before starting on another TKI (of which there are 4 alternatives to imatinib). Dasatinib is a 2Gen TKI and you may not need the standard dose of 100mg. Its side effect profile differs from imatinib and a minority can develop plural effusion, but it seems that can be dose dependent and it is certainly reversible. Can I ask where you are being treated?

Try not to worry too much about 'relapse'.... your doctor probably means 'molecular recurrence' which is a different thing.

Good luck for the start of your new TKI, around 40% do not have an optimal response to imatinib and need a change of TKI.... if dasatinib does not suit you after all, then there are 3 others in our arsenal.

Sandy

Hi

thanks everyone for your replies.

been on dasatinib for a week now. Bit tired in the morning's but i have a cuppa and go and do a yoga session from youtube.

i have to say the yoga, which ive been doing for about 2 months is of great benefit and gets rid of all the morning aches.sets me up for breakfast then a walk with the dog.

Apart from a few aches and waking headaches i feel pretty good.

Sandy im being treated at Chichester Hospital and on the whole they are doing a good job. I cant fault the care , just a problem a few times with my PCR which is done by kings London. 

Paul

Hi,

I am new in this forum. I can closely relate my case to what scuba explained. Here is my case history-

I was diagnosed on September 2017 with PCR 50%.

Started with Sprycel 100 MG. Experienced low platelet and neutrophil and rbc. Reduced to 70MG. Counts constantly fell. Reduced to 50MG. Same condition. Doc stopped Sprycel on March 2018. Had frequent drug interruption during this period to let the counts go up. And PCR was 6% when stopped Sprycel on March 2018. Practically could not be on constant medication for even 3 straight months during this 6 months period (Sep 2017 to March 2018).

Started on Gleevac 300mg from May 2018. Initially platelet dropped quickly. 125 to 105 on first week and 105 to 77 on second week. But, on 3rd week its down to 72. Fell down a bit but not as fast as first two weeks. Neuthrophil and rbc and Hemoglobin are good and has upward trend. No drop. PCR result is coming next week.

I am really at my wits end on what is going to happen next. Very worried. Badly need your opinion on what your experience says about my case.

Best Regards

Sid.

Sid,

Your situation and mine are very similar. Consider returning to Sprycel - but at a very low dose (20 mg). Given your history (and mine), your CML is exquisitely sensitive to Sprycel. That is very good. The myelosuppression you are experiencing is normal and will resolve as your normal blood system regains control and your CML blood system fades away. It takes time. You are much better off "pulsing" with Sprycel on and off therapy in order to manage myelosuppression until you reach steady state. And you will. I suspect you are mostly through that anyway. Gleevec did not work for me in the same way it is not working for you. The dose required for effective CML control would be too high and crater blood counts while not helping reduce CML. Gleevec is dose dependent where Sprycel is not.

Low dose Sprycel will likely work for you and put you into deep molecular remission if not PCRU.

After years on 20 mg, I am still somewhat low normal blood counts - but very steady.

Hi everyone 

well unfortunatly after being on Dasatinib for 4 weeks my BCR/ABL has come back as 2.22 up from my last imatinib result which was 1.177.

Ive had to wait 3 weeks to get this result back from KINGs london ???

So ive actually been on Dasatanib for another 3 weeks since the 2.22 result which was taken after 3 weeks after originally starting.

Im hoping it might have gone down. they were going to test me in 3 months but i have questioned this ?

My result for my white blood cells, done by the local Hospital were down slightly ???

i guess i will get abetter idea on the next results, im on a high dosage 100mg so thought it would show a positive trend after 3 weeks.

Im waiting to hear back from the consultant.

(diagnosed 2 1/2 years ago been on imatinib until 6 weeks ago)

Paul

So im due back for blood tests on tuesday a month after my last tests.

They are not sending these tests for bcr-abl at kings London ?

Is this right ? Seeing as ive started on Dasatinib after my bcr-abl count started rising ?

It seems they are doing other blood tests monthly why not bcr-abl tests ?

Paul

Hi Paul, I’ve been on glivec since 2003 , and the 1st couple of years I had the same response as you, I went from 400 to 600 and I’ve been in major molecular response ever since . Maybe speak to your doc about the dosage x

Paul - I'm really sorry for all the consternation the confusion is causing you.  I would feel exactly like you in your situation.  My guess is that they ARE re-testing your CML status with a PCR in a month; they probably just haven't told you. I've found a remarkable ignorance, even now after all this time, of medical support people of just what exactly they're testing when they draw blood.  They also tend to get "BCR" and "PCR" mixed up, especially over the phone.  Just semantics!  The tubes undoubtedly go to the right place and lab tech and test, don't worry.

But, of course, your real worry is over your lack of progress, and possible REgress on dasatinib.  If your next PCR doesn't show a downward trend, I do think you ought to ask for further testing, like mutation studies and a bone marrow analysis.  You still have ponatinib and bosutinib in the arsenal, remember.  And Gleevec as well, as you got very close to MMR on that.  I know how discouraged you must feel, but there's plenty of hope.  Keep us posted.

 

 

Sorry - PS here - I guess I meant you got close to CCyR, which is a truly significant goal.  To confuse you more - sorry - have you had a FISH test done?  If that is negative, it's a real boost.  (That's CCyR.)