You are here

Your expert advice needed pls- 2 Failed TKI's, BCR ABL 29%... what next?

Categories:

Hello, I would really appreciate some help from this forums experts on my worrying position please.

I am 40 and was diagnosed with CML last August with WBC 300, spleen 30cm, had a BMA and they were unable to get a full sample after 9 attempts (no liquid).
Started in Imatinib 400mg and had very few side effects and felt completely normal… had a few interim tests and was all looking ok ish… then 6 months later it was flagged that my BCR ABL had never dropped below 18%... so it was decided to check for mutations (none found) and I was put on to Dasatinib 100mg.

I have felt terrible for the whole time I have been on the Dasatinib and feel it has just got worse to the point I was weak, tired. Low mood and couldn’t concentrate. My BCR ABL was 16% in July, but when I was tested 3 months again in September I had jumped to BCR ABL 29% /platelets 39/ HB 100/ Neutrophil 1.63/ WBC4.4!!!  (However due to the delay in getting the results back the 7th Sept testing wasn’t reported back to the hospital until 5 weeks later!!)

They stopped my Dasatinib a week ago now and I cant explain how much better I feel… and hoping this is a good sign? They have also re run my bloods this week, doing mutation analysis and having another BMA on Friday.

I am so concerned now, on most things I read on here everyone is 0.0 something and they are still worrying, but I have never even got into single figures…

I would really appreciate some knowledgeable options from the site experts if you would be so kind please. Also is there anything I need to be asking or pushing for in my appointment tomorrow etc… what is next for me?

Hi Betty,

Why did they stop your dasatinib? And to verify, you were diagnosed with CML around two months ago (August 2021)?

Hi Scuba.
I was diagnosed last August 2020.

They stopped my Dasatinib last week as my blood counts were low and wanted to give me a week break to see if they stats recovered.

BCR ABL 29% /platelets 39/ HB 100/ Neutrophil 1.63/ WBC4.4

I understand now. I went through a similar phase. Although my doctors waited until my neutrophils fell to 0.4 before stopping dasatinib.

What they did for me and I suggest for you in consultation with your doctor is for you to restart dasatinib at a much lower dose - 40 mg. As long as your blast cells are low (near zero), you have time to work through this issue and get on the other side sort of speak. You are still early in your treatment. There is a battle going on between your normal blood and the leukemic blood. The myelosuppression you are experiencing is actually a good sign as it shows you are very sensitive to dasatinib. As the CML cells get whacked, to borrrow a phrase from "The Soprano's", it leaves a hole in your blood system that has to be filled by your normal blood. This is a slow process and can take many months (years) to transition to normal. It took years to transition to CML.

(see section on myelosuppression, in particular)

Even at 40 mg, you may find your blood counts go down again. That's o.k. - stop therapy, allow recovery then restart dasatinib at 20 mg. Keep going on and off drug until your counts stabilize even at a lower level, but stable. Once you can stay on drug (20 mg.), you will find your bcr-abl dropping over time and your normal blood recovering.

Discuss with your doctors your conversation with me and let them know I worked with Dr. Jorge Cortes. If they don't know who he is, you may need to find new doctors. He allowed my blood counts to go as low as 0.4 neutrophils and 30 for platelets before stopping therapy. He then re-started me when I went above 1.0 neutrophils. I was having CBC blood draws weekly to verify I wasn't getting too low while on drug. One time I fell as low as 0.1 (which is dangerous) and had to stay off drug for many weeks before recovering. All during that time, my bcr-abl was in your range now. I know what it is like to go through this. Eventually, I stabilized at 0.7 and that's when I could stay on drug. It took 4-5 tries, but once I stabilized, my bcr-abl plummeted. Getting off drug back then was wonderful (no side effects), but when I restarted at 20 mg - no side effects and it nailed my CML (along with my emerging nutrition plans). I remained on 20 mg and eventually became undetected and now off drug completely. You can get there too - just be vigilant and know your numbers and be in charge of your health.

Also - follow advice here on nutrition to help your blood restore as well as fight bcr-abl which will help dasatinib do its job (i.e. vitamin D, K2, magnesium, curcumin, etc.). I don't know how old you are, but iron supplementation (heme variety only) and B-vitamins may help with red blood cell restoration.

Thankyou so much for your quick response Scuba.

I have a meeting with my haematologist tomorrow so will tell them about your experience with Dr. Jorge Cortes then. 

it’s reassuring to hear that you have been in the same boat, I was so worried that all I read about were people with 0.0 results and I was miles away from this even though 15 months in.

I am 40 years olde and will now look into all the nutritional all advice etc too and start some supplements. 
 

thanks again :) 

Hi, Betty,

Have you tried Nilotinib yet? I also started with imatinib, it did not work so well.  Then I was switched to Dasatinib, similarly, it gave me a lot of side effects. I asked my haemologist if he can let me try Nilotinib, he refused. So I turned to a different doctor, the new doctor was very understanding  and was willing to put me on Nilotinib.  Since then, I have almost no side effects, and BCR is down to a very low level.   So far, Nilotinib is the best out of the three for me.  My understanding is if something is not working for you, try the alternative.  Since it is likely I need to take TKIs for lifetime, I need to find the most effective and least side effects drug.   But talk to your doctor first, maybe also get a second opinion from a different doctor as well I suggest.  

Good Luck

William