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Bcr Abl rising on 2nd TKI, am I headed for BMT

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Hi,

I've been a lurker for almost 10 months and appreciate everyone sharing their stories. Looking for some responses, advice, or support for mine.

Brief backstory. I was diagnosed in June 2017 aged 31, a couple days before my bachelor party which was very unfortunately cancelled. I had 300k WBC count, enormous spleen and blast counts between 7-10% (borderline accelerated phase). I had been having symptoms for several months and finally got it figured out. They brought my counts down with hydroxeurea (sp?) and I started at 140 mg Dasatinib. Long story short, here is the progression:

0 mo: Bcr Abl 62%
1 mo: neutropenia, hold treatment 1 week then switch to 100mg dasatinib
2 mo: Bcr Abl 28%
3-4 mo: Bcr Abl 9%, but got severe neutropenia (ANC 150) the week of my wedding, held treatment for 4 weeks then switched to 80 mg dasatinib (wedding was beautiful, didn't get sick)
5 mo: Continue to get neutropenia, switched to 50 mg dasatinib
6 mo: Bcr abl 13%, started getting injection to help boost my white count in addition to the 50 mg dasatinib. No TKI resistant mutations.
7-8 mo: Bcr abl 18% after returning from honeymoon (Galapagos islands- also beautiful). Doctors switched to Nilotinib 400 mg (200mg twice/day).
9 mo- now: Neutropenia again after being on it 4 weeks, held treatment for the last 3 weeks. After being off treatmemt for 2 weeks, bone marrow biopsy showed 33% Bcr abl.

I have a few questions:
1) In your experience does being off treatment for a couple weeks cause your Bcr Abl % to jump up?
2) Does bone marrow Bcr Abl measurement have an offset to peripheral blood measurement?
3) I'm going the wrong way now for several months. Anyone have similar issues but eventually get to MMR?
4) Anyone have similar issues and eventually did BMT?
5) My brother is a match. Anyone who did BMT- how long did you continue TKIs and when was that decision was made?

Appreciate you reading and thanks all for your support.

Kevin A

Hi Kevin .... I responded to your other post on Neutropenia before I saw this one (with more background and detail).

My doctor did not want me to have any 'stim' shots (to fight neutropenia). He mentioned evidence that stim shots stimulate the cancer! And so the best way to fight neutropenia is with drug breaks and dose reductions (as you were doing).

I would not have switched drugs yet since Dasatinib was working for you - even on lower dose. I would avoid any stim shots and you should be having regular FISH tests until it falls to zero. FISH is most important to you at this stage.

There is much that can be done before any consideration of transplant. My situation was similar to yours and now I am PCRU on 20 mg Dasatinib. It took years to get here.

What was done for me:

1. Have weekly CBC tests (blood counts).

2. No drug until neutrophils rise above 700 - then start on 20 mg Dasatinib.

3. If neutrophils fall below 400 - stop drug - then re-start when neutrophils rise above 900.

4. When neutrophils remain constant while on drug - CBC can be tested once a month.

5. Check FISH and/or PCR. If PCR increases, increase Dasatinib to 40 mg. and start the CBC monitoring process over. You want to find the lowest dose that is effective.

The above procedure is safe as long as your blast counts are only a percent or two or better ZERO.

Get your vitamin D level above 50 ng/ml and preferably around 70 ng/ml (I take 5,000 IU's vitamin D3 per day with food).

Vitamin D helps blast cells (even leukemic ones) to differentiate and lose their cancer characteristics. Few people know this!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3725501/

Consider taking Curcumin (with pepper) to slow CML down. Not a cure, but can help make less TKI drug more effective.

You'll get through this - step by step and with vigilance. Key is knowing that your normal blood system has to recover from the disease and that takes time. Once neutropenia is beaten, you can increase drug dose further - but you may find out that drug increase is not necessary.

 

Hi Kevin
Congratulations on your wedding. I am glad you were well enough to enjoy it and your honeymoon. I am so sorry , however, that it has been such a tough year for you coping with the diagnosis and all the issues since.

I wanted to ask if you are in the UK or the USA? Are you under the care of a CML specialist? And if not, if you are able to see one, or ask your doctor to reach out on your behalf. I know some patients have had email contact with specialists and this has helped guide their own oncologists. Scuba is at MD Anderson and they are really pioneering regarding dosage reductions I believe.
When my husband was first diagnosed 6 months ago I relied heavily on the old LLS message board, now sadly closed. However, one of the members was really kind enough to save the material and its available at cmlc.ml You could scroll through the titles to see if any apply to your situation. Perhaps others whom moved here from that community can point you the right way. LLS also has a new CML community and you may find others who can help you there, especially Trey.
I also have heard many great things about curcumin ( you need to make sure you take an adequate amount). Also have you looked at an anti inflammatory diet?
Take care, Louise

Hi Kevin
Congratulations on your wedding. I am glad you were well enough to enjoy it and your honeymoon. I am so sorry , however, that it has been such a tough year for you coping with the diagnosis and all the issues since.

I wanted to ask if you are in the UK or the USA? Are you under the care of a CML specialist? And if not, if you are able to see one, or ask your doctor to reach out on your behalf. I know some patients have had email contact with specialists and this has helped guide their own oncologists. Scuba is at MD Anderson and they are really pioneering regarding dosage reductions I believe.
When my husband was first diagnosed 6 months ago I relied heavily on the old LLS message board, now sadly closed. However, one of the members was really kind enough to save the material and its available at cmlc.ml You could scroll through the titles to see if any apply to your situation. Perhaps others whom moved here from that community can point you the right way. LLS also has a new CML community and you may find others who can help you there, especially Trey.
I also have heard many great things about curcumin ( you need to make sure you take an adequate amount). Also have you looked at an anti inflammatory diet?
Take care, Louise

Welcome Kevin,  Although I think you've been here longer than I have.  Your #2 question got me thinking.  I went back and checked my pathology reports from five years ago when I had bone marrow biopsies, and my reports show that all of the PCR tests were done on peripheral blood, not marrow aspirate.  Is your pathologist doing it differently?  My CML was caught early before I had any symptoms, so maybe they do it differently if the CML has progressed further toward accelerated phase?

It sounds you both you and Michael responded similarly early in your therapies.  He's been through it and hopefully you'll follow his pattern and be able to get your response headed the right way and not have to worry about a BMT.

Kirk

 

 

Hi Scuba, Louise, Kirk:

Thanks for the replies and support, I enjoyed hearing about Scuba's journey and everyone's suggestions. I am seeing a CML specialist at Beth Israel in Boston.

The treatment strategy I'm on sounds relatively similar to Scuba's (weekly CBC, holding treatment when neutrophils drop too low, dosage reductions), with 2 major differences: 1) I started at 140 mg dasatinib and was slowly reduced over several months from neutropenia, while your strategy seemed to be the opposite - start low dose and increase after your neutrophil counts adjust to it 2) My doctors haven't mentioned any dietary/ vitamin supplements in addition to the TKI - just a balanced diet. They are more worried about drug interactions.

Was the vitamin D or Circumin recommended by your Doctor or just something you added yourself? I have read all of the hype about curcumin. The Vitamin D thing makes a lot of sense to me too, I tend to get seasonal effectiveness disorder and sick in the winter while always healthy in the summer.

I am planning to bring up the lower dose strategy at my next appointment, and ask if it would be recommended for me due to the neutropenia issues. I am wondering if I should get a consult at MD Anderson as well, at least to get a 2nd opinion - would be curious to hear your doctor's advice for my case. Not sure if you can share that detailed information here.

Again - thanks vey much - and best of luck with your ongoing treatment and discontinuation!

Forgot to answer two questions:

1) I haven't tried major dietary changes (ie anti inflammatory), though I eat very well and follow many of the latest health trends (green smoothies, kale salads, quinoa, etc etc) and rarely eat junk food.

2) Typically my Bcr Abl is measured every couple months from peripheral blood, like you. A couple weeks ago they wanted to measure it from bone marrow biopsy (aspirate?), I believe just to gather slightly improved information on what is going on in the actual marrow.