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New member. Anecdotal Covid complications…

Hello, everyone.  I am a new member to this group.  Was diagnosed with CML and began Imatinib 400mg treatment just under two years ago.  I’m a 64 year old male in frequent physical contact with my 4 & 6 year old grandsons (those dear, sweet disease vectors!)  I was under the impression that my TKI treatment was going fairly well (MR was up to 3.04) and then, despite having had both Pfizer vaccinations, I got clobbered with a severe case of Covid, the second week of January, 2022.  After six days in ICU, I was sent home on supplemental oxygen, and began a very slow, protracted recovery.  My MR dropped slightly to 2.99 in early February, but has steadily increased, since then.  I was house-bound for a couple of months, but made the choice to resume my life as a performing trombone and bass trombone player in several traveling groups, some time in mid March.  I weaned myself off the supplemental oxygen in early April. From July through September, I played over 30 3-hour gigs with a high-energy oldies rock band, touring all over Michigan.  My lung volume continues to be reduced to roughly half of what it was, pre-Covid, but I have improved my breathing efficiency to make things work, on a passably-professional level.  My most recently taken MR was up to 3.39, mid September, and my hemoglobin has finally increased to 13.1 for the first time in a long while.  I have been taking 1,000 IU of Vitamin D, throughout, and I haven’t gotten the recent Covid boosters, because I’m not sure they actually do anything.  My activity level is now completely unrestricted, and I go to the gym (cardio & weights) several times, each week.  
 

My concern is that my MR is only 3.39, after nearly two years of treatment (IS 0.0409).  While there is a steady improvement, quarter-to-quarter, I’m wondering if it’s progressing too slowly and if there’s anything I might do to improve the rate of change.

I have been quite healthy, thus far, in 2022, despite my regular interactions with my two young grandsons.  As the winter months approach, I am concerned about catching another seasonal communicable disease, and what advice this forum might offer to help me boost my TKI-weakened immune system.

I do not have a CML support group in my current circle of friends or acquaintances, so I have no idea if my numbers and rate of progress are ‘normal’ or not.  Thank you in advance for any comments or suggestions you good people might offer.  Life is good!

Hello, and welcome!

You say you have a result of IS 0.0409%. That's an optimal result, at any stage of treatment. Getting lower than that isn't corelated to better patient outcomes, so you are doing great! Especially if you are seeing reductions quarter-to-quarter.

If your blood counts (red cells, white cells etc.) are within normal counts, TKI treatment alone doesn't necessarily significantly weaken our immune systems.

David.

Thanks for the reply, David!  It’s good to get some perspective of what the numbers might mean, good or bad. All the clinical websites I’ve looked at seem reluctant to say what is a good BCR/ABL result and what isn’t.  

Any bcr-abl (PCR) result less than 0.1% is excellent. In fact, any level below 1.0% achieved within 18 - 24 months is associated with a 95% progression free survival.

Consider having your vitamin D blood level tested and if below 50 ng/ml, supplement to raise it so it is between 55 - 100 ng/ml. Your bout with Covid suggests to me your vitamin D level is likely very low (< 40 ng/ml).

Nutrition and the use of supplements where food quality is inadequate can help augment the effectiveness of TKI drugs.

 

Thank you, Scuba.  You may be spot-on, about low Vit D.  I’ve not had my Vit D level tested.  I was advised, by my former primary care physician, not to take more than 1,000 IU of D3… I don’t recall why, but I’m thinking I’ll have my hematologist add the Vit D level check to this month’s blood work.  If I’m low, what’s a safe way to ramp up my dosage?