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MR 4.5 again after almost five months off the drugs

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Good morning everyone

Happy New Year 2023 to everyone on this forum - may it be a great year for everyone with, most importantly, good or improving health!

Here's just a brief update on my situation:  I had to stop imatinib due to low blood cells and am now off the drug since 18 August 2022.  The story is detailed in two other longer posts.

Yesterday, I had another bone marrow biopsy yesterday as well as a whole host of blood tests.  To my great joy, all my blood cells are well within normal range:

Haemoglobin 16.6

White blood cells 6.6

Platelets 205

So it looks like the stopping of the drug has restimulated my bone marrow and it's now producing cells as it is meant to (but I guess the biopsy results will confirm this).

Also, incredibly my BCR-Abl results have dropped again and I'm back in MR4.5.  For the past five months off the drug, my results have been:

Aug '22 undetectable (just before stopping imatinib)

Sep '22 0.003%

Oct '22 0.003%

Nov '22 0.0042% (doctor said there is now an upward trend and preparing me for a restart)

Jan '23 0.003% (back to MR 4.5).

This is encouraging to me as I interpret these results as holding steady and stable for now, so I'm going to push for another few months off the drugs.  Where I live, a month's supply of TKI is much more expensive than a PCR test, so I'm going to ask whether I can't just have monthly tests until there is a significant increase.  From what I've read, most people relapse within the first year.

The one bit of bad news is that my glucose level has jumped to 6.0 and is now in the prediabetic range.  I don't understand this because it has never been above 5.2 before.  I'll be asking about that when I see the doctor on Monday.

That's just my news as the new year begins!  All the best to everyone, with kind regards from South Africa.

Martin

 

 

Wow! That’s fantastic, Martin. Long may it continue.

That is great news!  Happy to hear it.  Perhaps when you get back on the TKI a lower dosage would benefit you.  

Thank you so much David and ColoradoGuy!  I so appreciate the support.

Terrific news!  One trick on the glucose that tripped me up once - it's not a fasting test, but even so, if you eat 15 minutes before the test, it's going to be whackers.

Hi Martin, I just wanted to mention that it shouldn't be necessary for you to test monthly.  Your PCR level is unlikely to go anywhere quickly, so testing every two months should suffice.  If your PCR starts going up then resume testing monthly until it goes down again.  During the STOP Trials, of the participants who were going to lose MMR, 80% had already done so at just four months.  Remember, if you should need to restart your TKI, Imatinib 100mgs is all you will need.

Wishing you the best,
Buzz 

Obviously not a worldwide agreement, but the BSH recommendation (following TKI discontinuation) is:

PCR monitoring should be:

  • Monthly for six months
  • Six-weekly from 7 to 12 months
  • Two-monthly from 13 to 36 months
  • Three-monthly for year ≥3

Unfortunately, the testing protocol established during the STOP Trials for the purpose of gathering meaningful statistics leads to a lot of unnecessary testing when a CML patient is not participating in a Stop Trial and statistics are not being gathered.  Of course Martin can test as often as he wants but since 95% of those who are going to lose MMR during a TKI discontinuation do so within the first seven months, while 80% who are going to lose MMR during a TKI discontinuation do so in the first four months, much of the additional frequent testing is a waste.  In Martin's case, since he hasn't displayed any rapid increase in his BCR-ABL ratio through the first five months, there is very little chance that he will lose MMR at anytime within just a few months.  I haven't seen, and am not aware, of any CML patient losing MMR in the first month of discontinuation of their TKI which suggests beginning testing during the second month of discontinuation.  I haven't also seen a CML patient lose MMR in less than two months of successive BCR-ABL increases which suggests testing every two months and only testing monthly when a BCR-ABL increase is noted.  If a CML patient is undetected at two months of discontinuation, continue to test every two months until an increase in BCR-ABL is detected, then test monthly..

I also don't believe that monthly testing is necessary when a CML patient gradually reduces their dosage. After all, the CML patient is still taking a meaningful dosage of their TKI and their BCR-ABL ratio is unlikely to go anywhere quickly.  Of all the CML patients I have seen gradually reduce their dosage, I have yet to see any increase in their BCR-ABL ratio.

Buzz

Hi everyone

Thank you so much for all the wisdom and advice!  Kat, I appreciate your message as you put a lot into perspective - I have a power failure in the morning of my test and wasn't able to make coffee, so I had breakfast in the hospital coffee shop with a croissant just before the test... makes sense that the glucose showed a spike.

I really appreciate that information Buzz as I never knew that the loss of MMR was so sudden.  After reading the info you so kindly sent me, I read the article with the results of the STIM trial and it has given me a lot of hope.  My doctor seems to agree with you and has instructed me to test again in March - she also seems to think that monthly testing is unnecessary.  Nevertheless, she said that I would not have been eligible for treatment discontinuation for at least another three years... so it will all be very interesting to see what happens.  David, thank you so much for adding the international protocols - part of me is feeling nervous without monthly monitoring, and it's good to know what the guidelines are.

Once again thank you, everyone - I don't know where I would be without this forum.  I'll definitely keep you updated!

Best wishes

Martin