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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 MR4.5 (<.0032) except a blip at 3 months where it was detected at <.01, when I started to rise slowly over 4 quarterly tests (0.0032, <0.0032, 0.0034, 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

Unlike TKI, Interferon attacks LSCs and has more profound effect on the immune system. The standard protocol for those in MMR is 1 year Interferon + TKI and then another 6 months only Interferon and close monitoring. Tests showed that even only 3 months of Interferon therapy improves TKI response.

Before Gleevec, it was administered at high doses which had immediate effects on cell counts and dramatic side effects. Tests of Interferon + TKIs proved the effectiveness of lower doses, 15-25 mcg for newly diagnosed and 45-50 mcg pw for those who failed at least 1 TKI. At these doses there are no immediate effects on cell counts, at least I did not see any, and side effects are mild, e.g. tiredness in first several weeks, skin rash, brain fog etc.

You must "qualify" for it, your doctor will explain if it's for you or not, e.g. no auto-immune issues or history of depression, blood counts must be above certain threshold etc . Also, it doesn't work for everyone, e.g. it's known that it doesn't work in people with insulin resistance. That's where healthy lifestyle could help increase the chances of success.

I took it for non-TFR related reasons. I failed multiple mono-therapies, but finally responded to Asciminib-Dasatinib combo. 3 mutational tests failed to detect anything in the blood, but then 2 mutations were discovered through bone marrow biopsy. My peripheral blood normalised only a month ago, so now we are focusing on BCR.

Sorry Pin, I didn’t mean to hijack your thread.

30k, I like how you walked us through your experience, I have to say it interests me. Hopefully some of those side effects you have run into will be short lived. It has been my experience that the body needs time to process and adjust. Keep us updated.

JP

@ JP Thanks, honestly - this is really helpful advice and this is what I am planning to do, as well as increasing my vitamin D (sunshine) intake :) and no worries about hijacking, I am also really interested!

Do you need a prescription for Interferon? Is it also tablets now? I'm sure it used to be injections back in the day...

Yes, the tiredness lasted only for the first 3-4 weeks and usually manifested the day after the injection and went on for a day or 2. Then in the 2nd month I got a bit of brain fog which I noticed while attending a language course in the evening and had to focus real hard for 2-3 hours. That also passed, now I get some kind of red rash on my head, but it's not a big issue and I hope it goes away soon.

You definitely need a prescription. I purchase Besremi 250 mcg pens which are basically syringes with dose dials, so I get 5 doses in each pen. This is ropeginterferon alpha-2b, but there is also 2a and both are used for CML. It needs to be refrigirated and the instructions say should be used within 4 weeks, but I use it over 5 weeks.

Interferon on its own as well as in combination with Imatinib, Dasatinib and Nilotinib is an approved CML therapy, at least in EU, so your doctor should be able to prescribe it. There are ongoing trials for Interferon with Bosutinib, but I think it still hasn't been approved.