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How to hold on to my TFR?

Hi all,

I can see a few familiar faces here from those old days, I used to be a member of the old forums on lls - maybe you remember me? :)

I was diagnosed in 2011, on imatinib (6yrs) then nilotinib (5yrs), and have been lucky enough to try TFR since Nov 2022. I was in at least MR4.0 since 2013, and then MR4.5 for 2 years prior to stopping.

Everything was going well for 2 years until about 12 months ago (all <.0032 except a blip at 3 months where it was detected at <.01), when I started to rise slowly over 4 quarterly tests (0.003, <0.0032, 0.007, 0.011), I know I am not yet close to 0.1, but it's starting to feel inevitable I will relapse in the next year or so.

Has anyone tried any supplements or anything that they have seen improve their immune system? I know there is still not a lot of research on this, but I don't want to go down without a fight, I really struggled with side effects on TKIs and coming off them was absolute hell for 18 months (extreme joint, tendon, and muscle pain) so the thought of doing that again is also stressful.

I have been taking NK cell booster and probiotics, I eat well and exercise regularly (football, running, yoga, walking), but I am stressed at work a lot, I've tried really hard over the last 3 months to change this, I even went on a holiday right before my test, but it doesn't seem to have helped.

Any tips welcome!

Thanks,
Pin

Try to keep your weight within BMI, eat only 8 hours per day, stay away from carbs and sweets as they help promote inflammation, exercise and stay fit, and maintain a sunny attitude toward life… Oh, and don’t read or watch the news…

That’s all I can think of. I haven’t come across any supplements that make a difference.

I was. never able to maintain MR5 without TKIs, but I believe what I mention above keeps my BCR/ABL in better check then just left to the drugs alone, especially keeping to a healthy weight.

JP

Hi Pin,

Interferon can help if you can get it.

Zoran

Wow, I will admit my post to eat well and exercise can be lame advice to some people….. but I don’t know, mentioning interferon scares me. I would have to do more research. For me, I wouldn’t go there unless absolutely necessary.

Go where? It’s now considered first line treatment for younger patients who don’t want to take TKI forever. You should read about what it is and what it does and how it makes a difference. I’ve been taking it for 3 months now, low dose 50 mcg per week, in addition to TKI.

Healthy lifestyle is important, but it won’t reprogram your immune system or affect LSCs.

I agree a healthy lifestyle won’t reprogram the immune sys….

30k,
So you’re taking interferon. I know that was used as the first line of defense before Gleevec came onto the scene. I just heard it was a less targeted drug. This is interesting. You should create a thread to document your progress I would love to follow your experience. I will look into interferon..

Mind if I ask how you’re doing on interferon? Any notable side effects to report? What are your numbers like?

JP