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Is a sudden transformation from MR4 to blast crisis possible?

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Hi everyone

I've unfortunately had a setback in my CML treatment and was hoping that someone on the forum could give me advice, please.

Last month (30 June) my latest BCR-Abl test was 0.003% and MR4.5.  I've been in MMR since January 2018.

Yesterday, a complete blood count showed that I have pancytopenia:

Red Blood Cells 2.37

Haemoglobin 8.8

White Blood Cells 3.18

Platelets 98

The doctor called me in and said that this was very serious - I've never had any low blood counts before - and immediately booked me in for a bone marrow biopsy.  She also said that I must prepare for some difficult months ahead.  I have no idea why my counts are so low, but it completely freaked me out this morning when I saw my admission sheet - she had written "CML transformation" as my diagnosis, which makes me think that she believes that the disease has progressed.  I find it so hard to believe that one can go from MR4.5 to blast crisis in less than a month!

A search revealed that blast crisis often presents with pancytopenia.  This is counter-intuitive to me because I thought blast crisis would show up as a high WBC, not a low one.  The doctor also prescribed me anti-depressants and organised a session with the psychologist as she said I'll need them for the road ahead... when I spoke to the psychologist today and said that I didn't think it possible for such a quick progression in disease, he answered "Well, cancer does that.  That's how it operates."  

If anyone has any experience with this, or just some advice or kind words, I'd be so grateful.  I get the results on 8 August so it's one very long wait... and it's devastating to me that I may not have beaten CML after all.

Thank you and kind regards

Martin

Oh, Martin!  Just saw this.  All I can send you is the kind words part; I'm hoping that Trey will weigh in on substance.  (And David and Theresa.)  I am sure I am speaking for many, many others who have read your words today and are actively pulling for your well-being.  While you wait this unconscionably long time for bone marrow answers, avail yourself of the psychologist's help in dealing with the uncertainty.  I doubt very much you would get this level of interim emotional management in the US!  I dunno about the antidepressants, tho.  But, hey, short of just being sedated completely until August 8th, maybe try 'em.  Many, many times I have felt the jig was up, in some medical downturn, only to find out at the end that things aren't as bad as I feared.  My therapist once said, "Most times, things turn out all right."  At the time, many words came to mind: jejune, anodyne, cliche, trite, moron.  But, I actually found I was clinging to that, and it helped.  I also came up with one of my own (after watching too many nature shows):  "Sometimes, the wildebeest gets away."  Laastly, my best friend once, after listening to my tearful tirade over some ghastly surgery, said, "But, Kath, it's DOABLE."  Hope something here helps even a little.  Keep us posted!

I don't have any advice on this,but sending positive vibes your way.As my father who is a doc will say,let the report come then only you will know the full picture.

Martin is one of my closest friends - we met virtually on here several years ago when CML once ruled my world (no more) and we have remained very close since opening up about our diagnosis of CML and our personal lives. He’s been nothing but a shoulder and a support to me for several years - and I attribute my strength now largely to him. If anyone has any advice on this please do chime in as this is a real time of need for him...

My two cents for all of us, this stage of Martins CML affects us all and how we view our “remission”. “All is ok you're MMR and in remission you don’t have a mutation don't worry your tablets are working, take your pill this will never be a problem for you” is what we are sold/I have been sold. And referencing Martins comment from his therapist "Well, cancer does that.  That's how it operates."... well not CML for all we have been told...

I am not saying this is CML related or even Blast related. I am failing to belive that it is. How can it be that he’s been MMR for 4-5 years and MMR 4 and below for 3 of them. 1 month ago all counts are in range and then all counts are so low that it requires a transfusion and a 2nd bone marrow biopsy. How is that remotely possible in CML? I would have thought blasts in the blood would be the 1st tell, bleeding, bruising and most definitely not feeling right. Why are they monitoring BCR in the blood if BCR doesnt always correlate to Accel/Blast phase. As far as I know my great friend here has none of that. Can this really be CML? I am failing to believe it is - or is it something else unrelated possibly going on? We really need that CML support here right now. I know a lot of this is guess work but there are a lot of veterans on here that may be able to shed some light or share a similar experience. Could TKI suddenly cause blood count crashing - I am sure I have read on here that has happened but can that happen so late and in MMR +6 years. 

Hopefully this comment bumps this post at the very least as it needs some desperate support.

Alex

Any recent medication that may cause more TKI concentration?

Martin, I have no advice to offer, just want to say when I put myself in your place, I so feel your anxiety and stress, and so wish the result of the bone marrow biopsy will reveal nothing untoward is taking place.

I must be honest with you, the psychologist's  reply "Well, cancer does that. That's how it operates".....actually rubs me totally the wrong way. That is NOT what we want to hear when we are bewildered and afraid and don't know what the hell is going on.

12 days till August 8th....and I am sure every single one here is rooting for you to receive the result that your heart is yearning for. My very best wishes to you dear Martin.

pigeon

 

 

 

 

Hi Martin I am fairly new to the world of CML so can’t really comment much.  I pray for you for a positive outcome. Mina. 

Martin,

It's unlikely you went from MR4 to blast crisis. Blast crisis presents with very high count of blast cells (>20% of cells). You don't list your blast cell percentage. What you describe seems more like myelodysplastic syndrome (causes myelosuppression) or multiple myeloma which can occur in CML patients even in remission. It is usually associated with mutations in normal hematopoietic blood cells such as trisomy 8 or monosomy 7. Your doctor will specifically be looking for these kinds of mutations from the biopsy. It's possible the drug you are taking for CML is causing the myelosuppression (which happened to me) and stopping therapy for a while may lead to blood count rebound. Without additional data, however, it's hard to know. I do not suspect you have high blast cells. Verify to be sure.

Stay vigilant, read up on multiple myeloma and myedysplastic syndrome for background along with the article posted in this thread by An.

 I often see people referring to their blast cell count in posts in this forum; it is obviously important, but I never see any reference to it in my quarterly blood tests.

I have no idea what my blast cell count is. I have been  MR5/undetected for a while now, but don't remember ever seeing a result for blast cells in my blood test report. Should I ask for it to be tested nxt time, or is it a stupid question....sorry, I obviously have limited knowledge.

I am being treated at the Hammersmith in London, maybe someone who is being treated there can enlighten me? Thank you.

pigeon

 

They don't report,because you don't have blasts,otherwise it will be in the manual differential.

Hi Kat

Thank you so much for your kind words and for your encouragement.  I haven't made use of the antidepressants as I want to be on as little medication as possible, but I have been talking to the psychologist and finding that useful.  Short of waiting for the report, I guess there's nothing more I can do!

Thank you also for those quotes (I especially liked the wildebeest one because it is one of our South African animals!)... and as you say, often some good comes out of the medical downturns.

I really appreciate your reply!  I'll let you know what happens on 8 August.

Martin

Hi Alex

Thanks so much for your public words of encouragement and for your friendship over the years.  You have helped me so much through leukaemia and this is why this group is so important - I met a great friend I would never have had otherwise!

I agree wholeheartedly with what you say about MMR.  It makes very little sense that there can be such a jump from one month ago when it was almost undetectable.  I'm holding faith that it is TKI related as you've said - I found a few scholarly articles that pointed to people developing anaemia and even bone marrow aplasia late into treatment on imatinib.  My adverse effects on dasatinib started only after 2.5 years, so I am holding onto the hope that something similar has happened after 3 years on imatinib.

Thank you so much again Alex - will keep you posted!

Hi An 

Thanks so much for your wisdom... you're quite right that I can only wait for the report and try not to get too hyped up about what could possibly have gone wrong.  I'm also grateful for the article you sent as it shows that weird things can happen with CML, even late into therapy.

I haven't started any new drugs, but I also have a condition known as haemochromatosis that requires me to have blood drawn on a regular basis - the condition means there is too much iron in my blood and it gets eliminated by drawing a pint of blood every few months.  Recently the doctor ordered that I do it monthly as my iron remains high.  That's the only major change, and I hope that this has something to do with it.

But thank you again - only time will tell.

Hi pigeon and Mina

Thank you so much for your kind words and thoughts - it means a great deal to me.  I also didn't enjoy that comment from the psychologist and, as you say, it's not what one wants to hear!  But the rest of my discussion with him was very valuable and I will see him again on Friday.  

Best wishes to both of you for your ongoing treatment!

Hi scuba

Thank you so much for your reply and for being a great source of knowledge, wisdom and inspiration on this forum.  I also think that it is more likely to be a different bone marrow condition and that was what I was expecting until I saw what the doc had written as her diagnosis.  I'm still hopeful that it is either drug-related or related to my frequent recent blood draws.  Strange to believe I was asking about possible drug reduction less than a month ago!

Today, I received the result of yesterday's blood test and it looks like things have improved ever so slightly:

Red blood cells up from 2.37 to 2.57

Platelets up from 98 to 115

Haemoglobin up from 8.8 to 9.3

White blood cells down from 3.18 to 3.10.

There is no sign of a blast cell percentage anywhere on my report - as An said in a follow-up comment, I also thought that they only report them if they are present and that one assumes they are zero if they're not mentioned.  The comments on the report say "Chromoplasia", "Persistent Macrocytic Anaemia", "Mild thrombocytopenia" and "Leukopenia with low absolute neutrophil count" (the neutrophils are at 1.5).

Thanks again!  I'll let you all know what the diagnosis is when I get the report.

An,you have just saved me from asking a silly question for my nxt blood test....But just for clarification, even when I was first diagnosed , nearly 5 years ago, I have never seen a reference to blast cells. Not even in the early days, when blood was taken every fortnight.

Anyway, thanks again,

pigeon

Hi Sunny,I don't know how it works where you are treated,in my husband's reports,there was one called manual differential,in that they had blast counts.I think you would have known ,so you might be good with no or very little blasts at diagnosis.

Yes An, I would have remembered the term 'manual differential'. Maybe they just don't show it here on the report, or maybe I had very little, as you say. But now I am curious, so when I next talk to my oncologist, I may ask her what was my blast count at diagnosis.

Bloody hell Martin. This must be a serious scare.

I don’t really understand how pancytopenia on it’s own can equate to disease progression. Blast crisis, as we know, generally presents with lots of blasts in peripheral blood.

I know that there are cases of “sudden” blast crisis but this would show up with lots of blasts in the blood work. Here’s some details on that:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8555935/

I am hoping that maybe your doctor is inexperienced in some of these matters and this is a case of something much more benign, or maybe even transitory. Have the initial findings been confirmed by a second test? I remember some years back when I had a very scary result but it turned out the machine miscounted, because when the blood was checked under a microscope it was much better looking (blast cells were miscounted by more than a factor of 10).

You should get in touch with Hammersmith Hospital here in London. They offer an “ask the expert” service, and you don’t need to be in the UK or anything like that to use it. It’s offered to both patients and also to other clinicians who may not be CML experts. I know from speaking to them that they would like to see more clinicians get in touch. As I am sure you are aware, they are world leaders there with Hammersmith being the first place in the world to perform a bone marrow transplant.

Here are details of that. There is nothing to stop you asking them about your case - you will get expert advice way beyond what us on this forum can offer. You may also suggest your doctor get in touch with them if they are not a CML specialist themselves. 

https://cmlsupport.org.uk/asktheexpert

Thinking of you … this must be hard to take. Fingers crossed for you.

David.

Hi there David

Many thanks for your reply, for the insightful article and for the really helpful suggestion on getting hold of the Hammersmith Hospital.  I knew that they had the service but thought one had to be in the UK to make use of it!  I'm definitely going to get in touch with them and see what they say.

Thanks also for the crossed fingers.  I can rule out a lab error because I was called back immediately to have a second test, which was done on a different machine, and this confirmed the first result.  So I'm stuck with these low blood counts.

It's hard not to speculate or feel terrified, and I've been trying to inform myself as best as I possibly can before next week.  From everything I've read, it looks like sudden blast crisis is unlikely; however, the most likely explanation seems to be the development of myelodysplastic syndrome as scuba suggested.  I've read several articles that say that it can occur in a tiny population of patients treated with TKIs, and I'm preparing myself for this as the likely outcome.  Nevertheless, I'm holding onto some faint hope that I have because the doctor was wrong before: after 3 years on dasatinib I suddenly developed lymph node swelling that looked to her like lymphoma, but was a late side effect of the drug.  My hope is that somehow my body develops side effects to TKIs late into treatment and that this is just because of the imatinib... and that my counts have suddenly gone haywire because of my frequent blood draws (more than a pint every month).

I just want to reassure people that this seems to be an exceedingly rare complication from all I have read, and that my journey with this condition has been far from normal - my doctor has often described my case as "complicated".  Anyway, I'm grateful for all the advice, thoughts and prayers, and now all there is to do is wait and hope!

Best wishes, and congrats to all in England on the Euro 2022 women's football. I watched the game and was rooting for the Lionesses.

Martin

Martin - I have read your posting and kind replies with much interest.  I went over my previous results and found a blood draw that stood out to me.  For my draw on 3/20/19 (March 20th) I had the following:

Neutrophil Absolute: 1.0 (my lowest ever)

Platelets: 112 (second lowest ever)

RBC: 4.63 (under threshold, happens often)

WBC: 2.9 (lowest ever)

Hoemoglobin: 15 (only one in the normal range)

Coincidentally, or not coincidentally this result is when I had a test go from CCyR to 1.2 on my BCR/ABL.  We switched from Dasatinib to Nilotinib without any mutation testing or BMB.  The following results ever since have been back to normal on all accounts listed above and BCR/ABL in MMR.  My platelets have only been inside normal (above 150) two times in 5 years, currently 141.  If there are no blasts, perhaps a break and switch to another will get the numbers up.  Praying that you find the right solution in the next few weeks.  Keep your head up.

Hi ColoradoGuy

Thank you for your response and for taking the time to look through your blood results for anomalies!  I so appreciate you sharing that experience with me - it's really interesting and shows how the CML journey is full up ups and downs and bumps in the road.  Glad to hear that the change to nilotinib has been a good one for you and that you were spared another BMB - interestingly, the second one was way easier than the first one and I chose no sedation this time.  I'm really hoping that this is, somehow, drug-related and that it's time to switch to something else.

Best wishes

Martin