I was recently diagnosed and started Imatinib on July 5th. Today I was asked to stop the treatment until my white count, platelet count, and absolute neutrophils can all come back some. They are all very low: wbc = 2.0; platelets = 78; absolute neutrophil = .99.
Any wisdom?
I have the same problem. When I started Imatinib 400mg in January, my thrombocytes went from 131 -> 22 in four weeks (neutrophils 80 -> 0.7, WBC 323 -> 1.6). Had to take a two week break.
Then a period of four months on Imatinib 400mg but with low blood values (thrombocytes between 60-100 and neutrophils 1.3-1.7). Blood tests every or every two weeks. A sudden drop one week in beginning of July and another break, one week. Now back on it again, still same 400mg dose.
They did a mutation analysis at 3 months to check that there wasn’t any mutation, were another TKI may be better, but it wasn’t.
Doctor thinks bone marrow is a bit sensitive. Not necessery a bad thing I’m told. But we’ll know soon, I’m waiting for my 6 month PCR result now.
All this is a bit stressing mentally. I hate to take breaks. But I try to stay positive and I think if I look closley on my blood values over time that they are getting a little bit better but veery slooowly...
Doctor said it’s hard to know if values will stabilize now. If not we may switch TKI. She said 2:nd gen TKIs are better if you need to adjust to a lower dose. Again not necessary a bad thing, to switch to 2nd gen, she said.
Hi Rick it unfortunately seems to be quite common for TKIs to suppress some of the white blood cells and for patients to need to take a drug break. After a few weeks as numbers rise they restart the TKI , often on a lower dose. Sometimes a few breaks are required or a change of TKI. Its called myelosuppression.
I am so sorry this is happening so early in your treatment when you are already feeling stressed and anxious.
I believe the main thing is to be keeping a very good check on your blood work while you are on the TKI break. Are you having regular testing ?
what percentage of leukemia were you diagnosed with and did you have any blasts ?
My husband’s platlet counts are higher than yours right now but his wbc was most recently tested at 3.2 and his abs neutrophils at 1.1. So we are keeping a close watch on him too. I know there are others here who permanently have lower counts so it may be possible for you to resume treatment very soon.
best wishes Louise
How was your QPCR at 3 months? I am concerned that having to be off Imatinib so soon after starting treatment will compromise my 3 month results. Any wisdom or help here?
My QPCR was 114% at diagnosis (I think, if it makes sense to have >100%?).
At 3 months it was 12.7%. So maybe a little bit high but still a good reduction. (My two week break was after first month.)
Just now at 6 months it was 1.3%. Still not optimal but a good drop at least. I had the one week break just two weeks before that test.
So at least to me, yes I think maybe it affected a little, but I could still see significant reduction.
Rick have you had more blood tests done? Hope your numbers are improving.
Paul just had his latest blood tests and even tho he had increased his Sprycel dosage his white blood counts were up again ( and done of the red ones were down, but ok we think). Hard to keep track and we are a year in !!!
Louise, my numbers after being off imatinib for a week stayed very low; thus I am in day 12 of being off the TKI. My oncologist said that I could be off the medicine for as long as 4 weeks. I am a little stressed about this. I get my blood tested again on Monday. Hopefully I will see improvement. Peace.
I’m having blood test on monday too. I hope I still benefit a little from that last break.
I know how stressfull it is to take a break. My doctor told me it can be that the medicin is working a bit ”too well”, so try to think of it in that way and that it’s not necessarily a bad thing to be ”sensitive”, and also that a lower dose 2:nd gen TKI may also be an alternative.
Good luck on monday Rick!
Rick,
This could actually be good news. New research shows that patients who experience myelosuppression initially - develop a deeper response to second generation TKI drugs on lower dose. What they found is that in addition to your normal system getting suppressed, your Leukemic system is hit even harder (i.e. more sensitive). This happened to me. My myelosuppression was severe (dangerously low Neutrophil levels).
You will need to switch off Imatinib and probably move to low dose Sprycel (20 - 40 mg) after a drug break. Normal dose Sprycel will likely cause severe myelosuppression in your situation so I would avoid starting at full dose. Best to start at 20 mg and work your way up if you need. Chances are you won't need to raise dose.
The protocol calls for intermittent dosing with drug breaks to allow your blood system to adapt. Essentially you are reestablishing your normal blood system over your leukemic one. Over time your blood counts will stabilize (at a likely lower new normal for you, but sufficient) and your CML will be reduced substantially or rendered "undetected".
It will take some time, but you will get there. Be proactive with your doctor - most have no experience with what to do and usually will only keep you on the same drug at the same dose with drug breaks - or worse - pump you full of Neupogen (which stimulates the cancer!). You now know better.
Here is one link:
https://learningcenter.ehaweb.org/eha/2018/stockholm/216328/jangik.lee.t...
I have to find the other on myelosuppression.
Folks, I hope it is useful to some of you to know where I have lived with WBC over the last 30 years.
In 1988 I was diagnosed with testicular cancer, had surgery & radiotherapy and was given the all-clear after 3 years. At diagnosis they found my WBC was typically around 2 to 2.5, and neutrophils around 1. This was investigated by haematology who came to the conclusion that it was "just the way you are". I moved home around 8 years later and another set of haematologists investigated me and came to the same conclusion. Their comment was "You may not have as many white cells as most people, but they must be pretty good ones". All this time I carried a stock of broad spectrum antibiotics, but rarely used them.
In 2007 my CML was diagnosed very early after another home move, when the new GP wanted to establish a baseline WBC etc. ,and we found it rising. On 400 mg imatinib my PCR was coming down OK (no targets then) but WBC was around 1.4, and neutrophils 0.6. Consultant got worried despite the fact I had no infection issues and cut me to 200mg imatinib. PCR improvement stalled so we went back to 400mg after I think 6 months and I got to MMR 15 months post diagnosis. Thereafter she commented " I look at your blood counts and panic a bit - then I realise it is you and you are OK."
I've just looked at my last 3 years' data while I have still been on 400mg imatinib. Average WBC 1.39 , average neutrophils 0.46. I have not had an infection in that period where I have had to use any antibiotics - in fact I need to get them replaced because they have gone out of date.
I am looking at the data as it part of the story about dose reduction which I am delighted to be talking about at the conference next month.
I think huge credit goes to my first consultant at University Hospital North Durham. She saw the WBC/neutrophil data, but also saw that those numbers were not causing me an issue. On balance of risk the fact my PCR was not coming down was more significant than the low counts when I was not getting infections so we put my imatinib back up and got to MMR. I know I am unusual in that my WBC was always low, but I am a demonstration that it is possible to live with low blood counts and not have a significant issue.
I hope this is of some use to some of you.
Happy to report that wbc back up to 4.2, neutrophils back too, and I am back to 400 mg of Imatinib. I am appreciative of this forum and for all your wisdom!
Happy to hear , quoting from glivec fda thing ... 2.14 page 5 and 6
it is dependent on neutrophils(ANC) ,
https://www.accessdata.fda.gov/drugsatfda_docs/label/2016/021588s047lbl.pdf
Chronic Phase CML (starting dose 400 mg)
ANC less than 1.0 x 109/L and/or 1.5 x 109/L platelets less than 50 x 109/L
1. Stop Gleevec until ANC greater than or equal to 1.5 x 109/L and platelets greater than or equal to 75 x 109/L
2. Resume treatment with Gleevec at the original starting dose of 400 mg
3. If recurrence of ANC less than 1.0 x 109 /L and/or platelets less than 50 x 109/L, repeat step 1 and resume Gleevec at a reduced dose of 300 mg.
when my mother first started her treatment with glivec 400 mg , after a few weeks she wasnt neutropenic but her neu numbers was dropping rapidly. i wasnt aware of this steps and doctor just dropped her dosage to 300 mg.( turkish style i guess )
her neu numbers stabilized so from that time she kept using 300 mg .( until this january , she is on 200 mg now )
Hi there. I have been reading with interest the posts regarding imatinib and low neutrophils. I was diagnosed with CML last November. I had an initial optimal response to imatinib (400mg) but after 4 months my neutrophils has dropped to 0.86. As this is the time of coronavirus, it is obviously a bit more of a worry that they’re so low. I came off imatinib for two weeks after which my neutrophils were 1.9. I was put on a reduced dose of 300mg. One month later my neutrophils are down to 1.1. I have another blood test in three weeks time. My haematologist says if my neutrophils are below 1, I need to go onto a different drug. Can anyone share their experiences please on this? I’m reluctant to stop taking imatinib if I don’t have to. From looking back at old blood counts from years ago before I got leukaemia, I can see that my neutrophils have always been low. But I am never I’ll! Thank you.
Sally, you'll find my history with WBC and neutrophils half way up this thread. One of the haematologists who investigated my WBC pre CML and my first CML consultant both said that low WBC is much more of an issue for people who have previousy had "normal" levels. People who have always had a low WBC level seem to do pretty well, as I have pretty much since it was identified in 1987.
Thanks for your reply Alistair. Did you ever try a different drug to see if this would raise your neutrophils? My haematologist said that I’m someone who seems very sensitive to imatinib and therefore It probably won’t be suitable for me long term (if my neutrophils when next tested in two weeks are below 1) but I haven’t discussed with him the fact that I have always had low WBC. Also, I wonder whether he is keen to move me to a different drug because of the risks around Coronavirus.
Hi Sally; this was so long ago the other TKIs were not yet fully released. It was the way I was; imatinib hadn't caused the neutropenia.
