You are here

Update on my involuntary TFR attempt due to low blood counts

Categories:

Hi everyone

This is an update on my situation.  In brief, I was forced to stop my 400mg imatinib treatment this last August after developing very low blood counts (white, red and platelets) almost 7 years after being diagnosed.  Today, I received the results of my latest full blood count and BCR-Abl test.

Excellent news is that now, after almost 3 months off the imatinib, all my blood counts are in normal range!  My haemoglobin jumped from 12.6 in October to 16.8 (normal is 13 - 18) and the lab report says "Significant increase in haemoglobin is noted. Post transfusion?" as though the lab technician thought I must have had a transfusion to achieve such a good improvement.

Surprising news is that my BCR-Abl level has come back at 0.0042%, up only marginally from 0.003% from the last test.  This is without taking any TKI at all and, to be honest, I thought it would have increased much faster.  The lab report notes that I have lost MR4.5 and states (a little ominously) that "loss of previous molecular response is noted.  Retest and, if confirmed, further evaluation with a bone marrow aspiration or cytogenetics is recommended."

I'm thrilled with this result as I was expecting something quite different.  Nevertheless, given my complicated history with CML, I don't expect that TFR will be on the cards for me, and I'm fully expecting that I'll have to restart some or other TKI at some stage in the not-too-distant future.  I'll see the doctor on Monday and will either ask to continue taking nothing, or to possibly restart at a very low dose of some or other TKI.

Thanks to everyone who sent messages of support or prayers during this difficult episode!  All the best for your continuing recovery.

Best wishes

Martin

 

Martin, such good news about the latest PCR results. And the jump in haemoglobin! 

I know it is a niggle to see the rise from .003 to .004 but it really is more of what might be termed just  'noise', rather than a meaningful increase. That is what my doctor told me when I had such differences, and she is a CML expert. With me it fluctuated like this for years, until eventually it was hammered, and became undetected.

Fingers crossed for your appointment on Monday, bet you can't wait; because never mind what we say, it is your doctor who has the knowledge, and can give you the best advice. Should you have to re-start TKIs, and decide on dasatinib, see if your doctor is in agreement to start low, 40mg maybe? then if all goes well, down to 20mg.

Best wishes,

pigeon

Martin, this is very good news.

You might consider switching to low dose (20 mg) dasatinib (every other day) to "mop" up the rest of CML. Changing drugs can have a very high impact on residual CML given that imatinib took out the major clone.

Congrats Martin,this is good news,and tfr would be so welcome after all the tension you have been through.

Thanks so very much, pigeon, scuba and An.  I think that's definitely what I'm going to suggest: 20mg of dasatinib.  The only challenge is that I developed side effects of lymph node swelling on the dasatinib 100mg, but this was only after almost 3 years on the drug, and I don't think the doctor will be keen on my restarting it.  But perhaps she can be convinced to try 20mg.

Will update here on Monday!

Thanks again,

Martin

Great news, Martin!  So mysterious, what happened to you.  Ah well, Onward and Upward (or rather, downward lol)

Hi everyone

As promised, here's a quick update from my visit to the doctor yesterday.

She has taken me off the growth factor drugs as she thinks they've done their job.  But what remains to be seen is whether my bone marrow is now able to produce enough blood cells on its own or whether it is still scarred.  So we're giving it a month to see what happens, with another full blood count in December.  Then it's another bone marrow biopsy to confirm that the scarring / myelofibrosis on the marrow has resolved.

Unfortunately, the doctor thinks that the latest rise in BCR-Abl from 0.003% to 0.0042% shows an upward trend and that there is a risk the CML will come back.  If the test in January shows a further increase, I'll probably go on asciminib in the trial.  I pushed for low-dose dasatinib and she is willing to start me on 70mg (no lower).  I believe 20mg will do the trick, so I'm going to spend December gathering some research articles and outcomes of cases that, hopefully, will convince her - I felt really good on dasatinib and I'm sure a really low dose will eliminate the lymph node swelling that caused me to have to come off it.  Part of me also wants to go back onto something again, just to make sure that I don't get a mutation or something.

In the meantime, I'm going to eat as much grapefruit as I can, supplement with curcumin, enjoy the summer sunshine to elevate my vitamin D and just be grateful for another month off the drugs!

Best wishes to everyone

Martin

Hi Martin,

I don't really know your history but if you have been off of your TKI for three months and your CML has only increased to 0.0042, have no fear of taking a low dose of a TKI.  You mentioned that your doc is willing to put you on Dasatinib/Sprycel 70mg.  If she remains adamant on 70mg, splitting it would be 35mg which should prove to be far more TKI than you actually need at this point in your treatment.  None of us should take more TKI than we actually need to control our CML.

Wishing you the best,
Buzz

 

Hi Buzz

Thanks so much for the advice - I know from your prior posts that you are a strong advocate for taking as little TKI as possible and I agree with you wholeheartedly.  I'm going to see what the doc says and may try for 50mg.  My concern is obviously that the CML can come back and I want to hit it hard, but maybe once I reach MR4.5 again (hopefully) I will try for a drop.

Out of interest: how do people split doses?  Do you mean taking 70mg once every two days so an average of 35mg a day, or is there a way of splitting the pills in half?  I know it can be done with imatinib, but my Sprycel was a small, white pill that doesn't look like I can split it.

Thank you and all the best

Martin

Hi Martin, I spoke with my CNS and she was adamant that dasatinib should never be split, not with a pill splitter, not with anything else. I am aware however that people on this forum said that they do use pill splitter for dasatinib, and they are happy with it.

Regarding taking pills on alternate days: I can only speak from my own experience, my doctor agreed to 20mg dasatinib on alternate days, only because I was a scaredy cat and did not want to go TFR.

Generally speaking, a pill that can be safely cut into two, has a mark on it, and it is kind of flattish, which lends itself to precise splitting, safely and accurately. Dasatinib, on the other hand, is a little round thing.

I hope that you stay on dasatinib, and that your doctor is happy to start you on 50 mg. Current wisdom suggests that with dasatinib, a lesser dose is just as -if not more- effective, as a higher dose. Also, less chance of the dreaded pleural effusion.

All the best,

pigeon.

Hi Martin,

At 0.0042 you are essentially at MR4.5 (0.0032); in regard to splitting or taking a TKI on alternate days, my belief would be that splitting and taking a given amount of a TKI on a daily basis would be the most effective.   Acclaimed oncologists from MD Anderson in the US have long endorsed splitting pills, specifically Dasatinib, saying that pharmaceutical companies have a vested financial interest in not doing so.  Taking a TKI on alternate days is also fine.  In splitting pills with a pill splitter it really wouldn't matter if a Dasatinib 70mg split came out 40/30, as the. average would still be 35mg/day over two days.  One person on the US LLS forum successfully split Dasatinib 20mg (which are said to be very small) over a long course of treatment (and as far as I know she is still doing so); of course she was using a precision pill splitter and also had a scale to back her up.

During my own dosage reduction years ago, I both split Imatinib 100mgs and took them on alternate days; either way worked for me.  

Buzz

PS: in other news, my annual BCR-ABL test was initially reported as ABNORMAL ... as it turned out that only meant that CML was detected, albeit at a very low level, 0.0082, which is normal for me; still in TFR after six years.  

Martin - I hope you will find some research backing up a 20 mg maintenance dose of dasatinib, but I was never able to find anything that studied below 40-50 mg (considered "low" dose.)  However, I had a go-ahead from both Dr.Druker and Dr.Cortez, via email; they feel dasatinib is "different" and the mutation theory does not apply.  This is with the understanding that this applies only to people who are in your range of CML burden (not newbies, in other words.  Anyway, for your anecdotal file:  I have been consistently in the MR4 to MR4.5 range on 20 mg dasatinib for about 4 years.  (I had a good history prior to this reduction for 9 years, part of that on imatinib, then dasatinib at 70 or 50.)

Martin, as a measure of your response to stopping your TKI three months ago, during the STOP Trials, at three months TFR, most of those who were going to relapse (exceed 0.1), had already done so.  Your 0.0042 after three months is just another indication that a low dose TKI is all that you need to combat your CML.  If you stayed off of any TKI you would likely eventually relapse some number of months down the road but not anytime soon.  For those who can, continuing to take a lower dosage of a TKI is the next best thing to not taking a TKI at all.  

I read back on your opening of this thread.  If you had reduced your.dosage of Imatinib at an appropriate time it's likely that you wouldn't have had any blood count issues.  One of the major shortcomings of this forum is that individual CML histories aren't readily available.  How long have you been taking Imatinib 400mg and what is your CML level history.   You don't need a blood marrow aspiration or anything else.  It appears that the only problem is that you have been on a full dose of Imatinib (400mgs) for far too long and the potential side-effects finally caught up with you.

Wishing you the best,
Buzz

Hi everyone

Sorry for the late response to all the incredibly helpful messages - it's our academic year-end and I've been really busy marking my students' exams, so haven't checked in here in a while.  Thank you so much to everyone who took the time to respond to me!

pigeon: Thank you for the info - that's also what I thought: pills that are meant to be split have that indentation in the middle for the pill cutter... I am definitely going to push for the 50mg as you suggest!

kat: Thank you so much for your story and for the info regarding your levels.  If your experience has the backing of Dr Druker and Dr Cortes - legends in the field of CML - I'm sure my doctor may listen to what I have to say!  This also lends some support to my belief that 50mg should be fine for me.  

Buzz: As always, your posts are extremely helpful and informative.  I've been following them on the other LLS forum as well and I agree with everything you say regarding how too many people have been on high dose imatinib for much too long.  To answer your question about my CML history: diagnosed in borderline accelerated phase, started dasatinib 100mg.  Struggled to reach MMR and got below 0.1% only after 2 years - hence the doctor told me I would never be a candidate for TFR (and also, I'm guessing, why she was so hesitant to reduce my dose).  I went onto imatinib 400mg a year later after developing swollen lymph nodes on dasatinib.  Things went fine for 4 years with a steady decrease in BCR-Abl, bouncing in and out of MR4, until undetectable in August this year, together with the blood count issues.  Last three tests were 0.003%, 0.003%, 0.0042%.  

I am so very grateful to everyone and I think your advice is excellent.  I'll push for 50mg - at least until I reach MR 4.5 again - and then will hopefully be able to go even lower.

Thank you once again

Martin

Martin, if I read your CML history summary correctly you experienced a swollen lymph node issue after three years on Dasatinib 100mg and were switched to Imatinib 400mg for the last four years before running into another issue.  Since you had a prior issue with Dasatinib 100mg, I wonder why your doctor wants to switch you to Dasatinib 70mg, not really that much of a dosage reduction as compared to the dosage that caused you a problem.  Typically if a problem is experienced on a given dosage, a measurable dosage reduction usually solves the problem, rather than switching to another TKI.  In your case this provides you a good argument to go on a lower dose of Imatinib ... personally I believe Imatinib 100mg would suffice, or, worst case, a much lower Dastainib dosage, if your doctor insists.  

I think you test again in a week, followed by another appointment with your doctor, for the decision on your restart.  Not expecting much of a change in your CML result.

Wishing you the best,
Buzz

Hi Buzz

Thank you once again for the really helpful info.  I agree wholeheartedly with your advice and also believe I should have been on a much lower dose... I've just been for the test, but it turns out it wasn't BCR-Abl, just a full blood count to see whether I'm okay without the neupogen injections.  I'll find out next year when I go for the bone marrow biopsy.

I am grateful for your suggestion of 100mg imatinib as I hadn't really considered that.  This is what I'm going to push for!

Thank you again and have a good December.

Best wishes

Martin