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Not achieved MMR , BCR-ABL UP again .. Really need help

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Hello Scuba, David, Alex and ALL

I am from the US. Two years ago, I was diagnosed with CML with 67% BCR-ABL after that was put on Imatinib 400 mg, but after one year, when BCR-ABL was high, my doctor did a bone marrow biopsy again to look for any mutations. No mutations were found, so he prescribed Bosulif TKI 400 mg in August 2022. After taking Bosulif, my BCR-ABL levels lowered to less than 1%, but then fluctuated from 0.288 to 0.362 again
Currently, I take Vitamin D3 5000 IUs with K2 400 mg and Magnesium in the morning, and in the evening after dinner, I take TKI Bosulif to avoid side effects like diarrhea.

It has been 24 months, but I have not achieved MMR. I am really nervous. Shall I discuss with my doctor about switching to another TKI Like Sprycel ? I don't know what to do. It's really frustrating to me over all

3-Jun-22 - 67.012
16-Aug-22 - 32.013
16-Nov-22 - 2.057
15-Feb-23 - 1.216
18-May-23 - 1.312
18-Jul-23 - 1.921 Was put on Bosulif
11-Sep-23 - 0.834
22-Nov-23 - 0.587
26-Jan-24 - 0.728
18-Mar-24 - 0.288
17-May-24 - 0.362

Anasiin2 your test trend is looking good after two years. My trend wasn’t as good at your stage. It took me almost 5 years to achieve MMR on Imatinib. In my opinion it does take a while for the battle to play out. You have a lot of copies that need to be eliminated. In the early days of my struggle I felt switching TKIs should be done only after one exhausted the effects of their current TKI. I don’t feel that way anymore. After switching to Nilotinib I achieved CMR relatively quick. Does that mean if I switched earlier I may have achieved CMR earlier? That’s a tough question to answer. I believe with TKIs we are in reset mode and that can take a while. See what the others say but rest assure that you are doing okay, no reason to be overly concerned. And always remember there are many other TKIs out there and most likely one of them is a good fit. You will achieve MMR soon and then you’ll be on your way to MR5 in no time. Good luck.

Hello Pojo,

Thank you so much for your valuable comments . I continue to feel that I am in a dangerous situation as my BCR results show no signs of improvement.
Is there any diet plan that needs to be followed ? Is there any supplement, such as magnesium or curcumin, that may interact with TKIs which I usually takes on daily basis? I am uncertain about this and would like to know more about when to take these supplements in order to minimize any interaction with TKI.

anasiin2, any BCR-ABL percentage of 1.0 (CCyR), or less, means that the CML presents no danger to you. You have been below 1.0 for quite some time so try to relax and go back to testing every three months.

Buzz

I, as I’m sure many of us, was very sensitive to results when I was first diagnosed. You are adjusting to a new reality. We have all been trained to fear the word cancer. Now you are being forced to understand it. It takes time to adjust. In the meantime try to work on leading a healthy lifestyle. Eat fresh and stay away from processed foods. Lay off the alcohol if you drink. Develop a good workout program. Walk at least once a day. Take a moment and appreciate all the good things in life. If you focus on things like that you will have less time to obsess on things that are not worth thinking about. You are trending down. Buzz is right you’re not in any immediate danger.

Take a look at this video:

https://m.youtube.com/watch?v=ZNm5SN47md4

This was shared in another thread on this site.
It will let you know where you are at.
I wish I had this to watch in the early days it would have saved me a lot of grief.

Thanks Pojo for the valuable information . It will help me a lot to overcome for unnecessary overthinking.

Hello Buzz1,

Thank you for your valuable response.

Looking at those results, you have a pretty good positive trend on bosutinib, but a bit spiky. But the trend is very clearly down, no doubt about it. You don’t need to be a statistician to see that.

Looking at that Nov .728 result must have been annoying as it was a rise, but then there was a big fall. Then in May you’ve had another annoying rise. A big fall could come next.

I would persist with what you are taking, so long as it’s working for you in terms of quality of life. If things were still stubborn in September, then I think that would be the time to seriously consider a switch to something else. We have many options these days.

What is your doctor suggesting next?

David.

Any bcr-abl level maintained below 1.0% is associated with a greater than 95% chance of progression free survival. Any level below MMR (0.1%) and progression free survival rises to near 100%. You are very close to that level already.

As others have pointed out, your PCR bumps are normal especially since you are in the early years. Your trend is good. The bump you report is within the noise of the test.

You can certainly consider switching drugs as drug rotation has shown efficacy at producing deeper CML responses. Sprycel does target CML cells higher up in the differentiation chain in comparison to the other drugs, but it is not without its own toxicity profile.

Staying the course is prudent.

Thank you David for your the reply, I have Dr appointment in next week . Will update accordingly.

Thank you for sharing the information, Scuba. I have an upcoming doctor's appointment in next week and plan to discuss switching medications with my doctor. Previously, when my BCR-ABL levels were high on Bosulif, I brought up the idea of switching to a different TKI. However, my doctor advised against frequent changes and suggested continuing with the current medication for at least a year to assess the achievement of MMR.

Hello All,

Below are my latest PCR-ABL test results. The PCR-ABL result is still 0.3182. I am not sure how long it will take to achieve MMR. Anyway, I have an appointment with the doctor next month to discuss the possibility of changing Bosulif to Sprycel TKI.

3-Jun-22 - 67.012
16-Aug-22 - 32.013
16-Nov-22 - 2.057
15-Feb-23 - 1.216
18-May-23 - 1.312
18-Jul-23 - 1.921 Was put on Bosulif
11-Sep-23 - 0.834
22-Nov-23 - 0.587
26-Jan-24 - 0.728
18-Mar-24 - 0.288
17-May-24 - 0.362
19-Jul-24 - 0.3182

Your trends look very similar to what I went through. I switched from Dasatinib to Nilotinib at around 18 months. Nilotinib took a while to get me under 0.1 (with some readings going slightly in the opposite direction along the way), but it eventually did, and I have been there for close to 5 years. Slight raises should not alarm you as they are pretty normal (at least for me). I switched to Nilotinib due to a big jump (like 0.3 to 1.2). I don't know if there is a standard rule, but I think three or four readings in the wrong direction is probably worth looking into (slight going up, not big jumps). Otherwise I think it is part of small plateaus we hit along the way. Make sure you are not missing doses.

Thanks ColoradoGuy for your response .

Last week, I met with my oncologist to discuss my BCR-ABL results. After reviewing the results, he suggested that I switch to a 3rd generation TKI such as asciminib or increase the dosage of Bosulif. Ultimately, we decided to increase the dosage of Bosulif and recheck the BCR-ABL results to determine if a TKI change is necessary. If this adjustment doesn't produce the desired outcome, my oncologist will conduct a bone marrow biopsy to check for mutations and consider changing the TKI medication.
I also inquired about switching TKI to Nilotinib or Sprycel, but my oncologist is uncertain about their effectiveness compared to Bosulif.
Please suggest if anyone have any thoughts on this.

Hello All,

I still haven't achieved MMR, and it's been 30 months now. My oncologist increased my Bosulif dosage from 500 mg to 600 mg in August, but there hasn’t been much improvement in the last four months. I have my next appointment with my oncologist next week, and he may change my medication to Asciminib. During our last visit, I asked to switch to Nilotinib or Sprycel, but he explained that Bosulif is comparatively better than Nilotinib, so he chose to continue with Bosulif at the increased dosage.

Is there any food or fruit supplement that might reduce the effects of Bosulif? I'm not taking any grapefruits.
I'm feeling a bit nervous about how I can achieve MMR. I would appreciate any updates or advice on this matter. Please see below recent BCR/ABL results.

Nov 8, 2024-- 0.301
Sep 10, 2024 -- 0.273
Jul-19-2024 -- 0.3182

Thank you!

There is a thread titled “Non-Detectable (0.000%) and potential cure for CML” pretty high on the queue that talks about using misoprostol to bring numbers down. You can either search or scroll down the forum to find it.

Hello JoeP

Thanks for the sharing that thread link. I have posted my comments on that thread.
Hope for the best.