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Imatinib apparent failure

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Hi Everyone,

First time in this forum (first time in any forum to be exact), my name is Gonzalo and I am 41 years old, diagnosed with cml in March 2018 (WBC ~30K, 1% blasts, CP, very slight spleen increase, 45% BCR-ABL), started imatinib in April (400mg).

CHR achieved (with high bilirubin counts, but within 3x) within weeks.

First BCR-ABL results for 3 months indicate very slight reduction in BCR-ABL - 43%.

I am bit worried that my path is becoming narrower ...

Has anyone faced a similar or comparable scenario? Is there anything I can do proactively?

Thanks for the help!

G

Since you've reached CHR, and if I remember correctly, a reduction on your FISH test should be the next indication that treatment is working for you. Did your doctor have any information for you about your most recent FISH result?

The bcr abl at 3 months was done via blood sample. Unsure if it’s “FISH”.

Doctor, is concerned a warning might be a failure so I will be heading for the bone aspiration table this Thursday. I assume he wants to get a second opinion and see if all 20 samples are ph positive.

G

"FISH" stands for Fluorescence in situ Hybridization.  When I was diagnosed the FISH report said, "The requested BCR-ABL1 fusion analysis demonstrates a dual-fusion signal pattern in 93% of the 200 nuclei examined."  Three months after diagnosis, it was down to 5.5%.

If your "FISH" at three months hasn't gone down compared to the level at diagnosis, then your doctor will probably look at changing your therapy.

At my diagnosis the cytogenetic analysis reported 20 of 20 metaphases positive for t(9;22), and at three months it was down to 1 of 20.

Hopefully, your reports will come back with reduced numbers!

Understood. Although i got the impression that it would be unlikely given the value of the bcr abl via blood sample.

Thanks 

 

 

I don't know much about unusual variants of CML, but as I understand it, there can be more in depth analysis of the genetic mutation that is causing your CML.  I've often wondered why it isn't done for all of us with CML. I suppose it's a financial decision.

Your may want to discuss mutational testing with your doctor so that you can be put on the best therapy for your CML variant.

I have had a somewhat similar experience. Started Dec 2017 with 303,000 wbc and BCR-ABL of 49%.  Imatinib. Three months later BCR-aBL 35%.  Mutation analysis showed no mutations. I was told I was resistant to Imatinib as are about 15% of people. Switched to Sprycel 100mg . 6 months in from diagnosis I am at 25% BCR-ABL, not what most experience. I am so envious of those tiny results.

 My  Corpuscular blood was normal.  Oncologist told me it might take another year to get below 10% on BCR-ABL.  So few people in this population that there is no sure prediction. Few if any studies. He shared one with me. So few cases like mine. No way to look at variables such as age. In the long run all ended up OK.

OK as long as the trend is down. I feel like a Unicorn.  

Another month in i am now experiencing low platelets.  Off Sprycel for 10days.  New prescription for 80mg Sprycel. Blood tests every week.

I do not know what path your body will take. You might be resistant to Imatinib as I am and react wonderfully to Sprycel or whatever other TKI they put you on. You might react slowly as I do. Whatever happens there are several drugs. As long as the trend is down and We keep in the Chronic phase.

are there any other Unicorns out there?

I would ask for testing for mutations. My Oncologist did this immediately after the 3 month result.

it will be OK. The waiting is hard. We all know.

Gitel

 

 

 

Gitel,
Thank you for sharing your story.
Psychologically speaking, I am absolutely devastated.
I have a very analytical mind and I have reviewed virtually all studies and documents regarding my current status (imatinib resistance) …stats, trials, mutations, drugs vs. mutations, overall survivability, …everything dating back to 2001. 
I was driving in my car today and thinking if my daughters (7 and 5 years old) would remember me in the future …
G

I’m new to all this myself, but there are still lots of options right? Other TKI’s, other doses, give it more time etc.? 

Gitel, I too have a very analytical mind (I was running a forensic lab when diagnosed, and went on to run a toxicology lab). All the papers come out with average results, and we can't all be at or better than average. A few questions:

1  Has a repeat BCR-ABL been taken - need to check if the 43% result is sound - many of us have had test blips for no apparent reason.

2  If something around 43% is confirmed mutation testing would be advisable.

3  Don't think too far ahead. Understand what you can control and control it. e.g make sure you take the medication every day.

4  It is very likely that your kids will know you for many, many more years. It may take a little time to work out how you are going to achieve that, but you will get there.

Best wishes

Alastair

Gonzalo, we hear you

i am in full agreement with the comments AlastairC has posted.  Especially 3 and 4. Consider them.

I have been where you are, reading, searching, analyzing, worrying and thinking.  I finally realized that my situation was so atypical that no research study would answer my questions.  What I had forgotten was the world of clinical experience that physicians have, over and above the published research. The answers concerning what to do are informed not only by the literature but more importantly by the real world of clinical experience. When I realized this I gave up trying to second guess what was happening. And yes, I have discussed this with my oncologist.

in addition to focusing on what you can control, and taking your medications, it is important that you access the best medical advice you can. To me this means someone with a central interest in CML and leukemia. It is important to have a physician who not only knows the literature but ,as important, has clinical depth in CML and has colleagues to consult with.  One who is not stunned by unicorns and who one can talk to.  I am fortunate in this. I am in the US and am a patient at the Mayo Clinic. My physician is a Fellow in Oncology-Hematology and under a senior Oncologist-Hematologist . I know that decisions in my case are discussed by the group of physicians he is part of.  As a result I do not worry if he is doing the right thing. For a constant worrier like me this is a big relief.

I am also fortunate in that I am old enough to be covered by Medicare in the US, although the cost of the medication, even with insurance is obscene. My daughter keeps saying this is why I saved for my old age...but it is Not why I saved. There are things I want to do.

I do not know where you are geographically, or in terms of insurance, but if you can be comfortable and secure with your physician that will go a long way to helping you on this journey we are on.

i have found the posts on this website wise and wonderful and sometimes irritating but always helpful and supportive. I am so grateful it exists and is so well managed. I am sure it will help you as it has helped me get through the early stages of a CML diagnosis and then go forward.

Please keep us informed on what is happening.

I am sure you will have many, many years with your children.  How do I know? Because I am old and I plan to see my grandchildren grow up.

Best wishes   Gitel

Gitel and Alastair, Thank you both for your kind words.
Alastair, I am confident that the bone marrow exam today will be used for both mutational analysis and confirmation of current status.
Medication wise, I have maintained a strict discipline of not missing a single dose and will continue to do so.
Medical support – I am being followed in a Onco focused large center with fairly large team in Hematology with some good credentials. That was my original decision - secure the best medical solution in my geography.
Resources / Insurance – costs are being covered and spillover is within acceptable limits. I work in finance and now (sadly) realize how the concept of a dystopian future in which people are able prolong survival solely on available resources might take place.
In my original post I mentioned this was my first post in a forum … ever. I don’t have any social accounts but I am grateful for being able to share and receive feedback from you all. Even for my closest family the detail and technicality of what we discuss overwhelms them.
G

Dear all,

After two very long months I have finally received all the information from my bone marrow analysis (taken at 3/4 months).

Bone Marrow visual analysis - CML in remission

Mutation - None with relevance (only one polymorphism)

CCyR - 20 samples with no trace of PH+

BCR-ABL - 2,2%

Conclusion - something happened with my first BCR-ABL at 3 Months, the 43% number is inconsistent with the above results. The lab that I used was different from the one in the center.

Thank you all for your support.

G

Gonzalo, Excellent news, delighted for you. Hope this puts your mind at rest.

 

Alastair

Gonzalo, very good/wonderful news.. thank you for keeping this forum updated on your experience. I am sure you and your family are very much relieved and you can now see a future where you will see your children grow up and have children of their own. 

Sandy

That's great news Gonzalo!  Why did it take them so long to get your results to you?  I can see why the two month wait was agonizing.  Are you scheduled for another PCR test at your six month mark from beginning therapy? Hopefully your results can be given to you in a more timely manner going forward.

Kirk