74 replies to this topic

[scuba]

Who out there has stopped taking their TKI's having achieved stable MMR or PCRU and for how long?

 

This thread's for you. Chris C ... PhilB ... (sorry Trey, you need to be TKI free to be a member, but feel free to root us on ... or join the club!). Others feel free to post well wishes!

 

Let's see if we can grow this list over time as more of us test the waters and become TKI free.

 

I will start:

 

Scuba (aka Michael)

Diagnosed May 2010

Gleevec failed to work

Sprycel 20mg until PCRU July 2014

Stopped Sprycel 10 February 2015

 

Remain PCRU TKI free so far 2 months ...

[Frogiegirl]

Scoobs does that mean you received your results? ???? Month two huh????

[scuba]

Not yet (I corrected my earlier post) ... still waiting, but each day I don't know, I add that day to the TKI free column. I expect to get the results by tomorrow or Monday.

[Frogiegirl]

Uhhhgggg....waiting is the hardest! You'll have to correct it again when the results come in. ....

[ChrisC]

I'm still post-TKI (last Sprycel 100mg was on Sept. 14, 2011) and still PCRU (achieved PCRU Sept. 14, 2009; has never waivered at all since then).

• Dx Oct. 22, 2008 459K WBC, huge spleen, had been very fatigued for months and had lost over 30 lbs. in previous two months
• Had leukapheresis for a week, got WBC down to 121K, then started Gleevec 400mg
• Over next seven months there were awful side effects, sudden hearing loss, fatigue; lowered dosage, took TKI break for 4 weeks, etc.
• May 2009 switched to Sprycel 100mg; no headaches, easy transition
• Sept. 2009 achieved PCRU, fatigue + brain fog, etc., continued
• Received permission to stop Sprycel having been two-years PCRU, stayed on full dosage until then as onc didn't approve lower dosage
• After stopping TKI in Sept. 2011, have remained fatigued (PCP tested everything, now says must be Chronic Fatigue Syndrome), have extensive arthritis in neck, feet, ankles; had total knee replacement in Nov. 2014, healed quickly (was up & walking a bit on 3rd day), but muscles still hurt a bit
• Have been taking gummy multi-vitamins as dessert after dinner for a number of years, plus B vitamins, vit. D3 (just added vit. K2 + MK-7 Gold)
Enough about me! Very best wishes for everyone's good health, comfort, and joy in living ✨

[scuba]

Hi Chris - you mean Sprycel 100mg - correct? (not 400mg).

and you added K2 ... good for you! Try Curcumin for the arthritis!

[ChrisC]

Yes, good catch! Have now corrected it!

I've used turmeric in cooking for almost 40 years (love Indian food). For almost two years now, I have been taking, somewhat irregularly, turmeric drops, and neem drops, in water. Very good to reduce inflamation.

I trust my body's intelligence and figure that if it needs something then I'll always remember to take it. This also applies when I try to start something that I've been told is good to take, but I never think to take it, to me it means it can wait for now.

I would only encourage others to do what they know is right, not do what I do unless it feels right.

☕

[scuba]

Yes, good catch! Have now corrected it!

I've used turmeric in cooking for almost 40 years (love Indian food). For almost two years now, I have been taking, somewhat irregularly, turmeric drops, and neem drops, in water. Very good to reduce inflamation.

I trust my body's intelligence and figure that if it needs something then I'll always remember to take it. This also applies when I try to start something that I've been told is good to take, but I never think to take it, to me it means it can wait for now.

I would only encourage others to do what they know is right, not do what I do unless it feels right.

☕

 

"I would only encourage others to do what they know is right, not do what I do unless it feels right."

 

Tell that to your son or daughter .... think about that. 

[ChrisC]

I was speaking to this specific CML audience.

It is in the spirit of:

"Do what you know is right; don't do what you know is wrong; and if you are not sure . . . wait."


http://youtu.be/mfwN0X8YnWo

[pammartin]

I am TKI free since early March 2014.  13 months now

 

Diagnosed in Oct 2011, developed pulmonary hypertension Jan. 2014

 

I had 3 month PCR test late March 2015 at local oncologist - undetectable

 

Cleveland ran another PCR test last week because they are particular about labs.  - Results pending

[scuba]

I received my latest pcr results ..... I am no longer pcru ... but I am also barely detectable... third decimal place. I will go another month and see if a trend develops... otherwise stay the course.

 

The only good news is that if it is coming back, it is coming back very slow. Next month should be decisive.

[JPD]

Well, keep the chin up and all that - margin of error, yeah

[scuba]

No worries... next month will be decisive and set the trend. If the result stays the same (barely detectable), I will continue my experiment.

[DebDoodah22]

Fingers crossed.

[threedprof]

I wish you the best, Scuba. Hopefully, your next month test will be back to PCRU. I have remained PCRU after my cessation since 2012. Was on Gleevec 400mg for 7 years prior.

[snowbear]

scuba ~ I thought you had to remain PCRu for at least two years before you can stop a TKI.  Why so soon?  Were the side effects that bad?

[scuba]

scuba ~ I thought you had to remain PCRu for at least two years before you can stop a TKI.  Why so soon?  Were the side effects that bad?

 

You are correct. One needs to remain PCRU for at least two years according to the "book". I had no side affects.

 

I have a hunch that waiting two years is not necessary. So I am doing my own personal experiment under "supervision". It is not sanctioned in the sense my Doctor approves. He doesn't. But he understands why I wanted to try and will follow my progress. I half expect it won't work - but I half expect it will. And if it does, I will have his curiosity.

 

My theory is simple. Once you achieve PCRU (4 or greater log reduction in PCR) and it repeats over one cycle - it may be possible that the body is maintaining remission on its own with a strengthened immune system. Philadelphia chromosome creation and subsequent CML expansion is a failure of our immune system. I believe the general population creates Philadelphia chromosomes all of the time naturally. It comes and goes. It's probably impossible not to create it, the chromosomes are so closely packed next to each other at the breakpoints. But the body has natural DNA repair mechanisms as well as other tools to cause these cells to die off once created. 

 

I believe that nutrition that emphasizes immune function may enable me to regain the upper hand against CML without the need of a TKI. I was very deficient in vitamin D at diagnosis. Vitamin D is vital for immune function - especially that part of the immune system which facilitates DNA repair and get bad cells to die off. I also take Curcumin which is a natural cell cycle down regulator (Nf-kB) and cancer growth antagonist. Curcumin is known to slow CML cell division and cause apoptosis. Between the two (and a few other things I am doing), I feel I have a way for my body to keep me at or very close to PCRU without a TKI. Not a cure - but perhaps a functional cure.

 

The risk is very small - if it doesn't work, I go back on Sprycel. If it does work - then waiting two years may not be necessary. Or - try and fail, try and fail and try - and succeed may be a useful path.

 

So Far I have been off Sprycel since February 10th. My blood counts are normalizing (I always had suppression with Sprycel) which was my main reason for trying, and I remain right around PCRU (0.005%). The third decimal place is irrelevant. My next test is May 10th. If I am still at or below this level, I will resume 3 month testing, but without taking Sprycel. If I can go a year like this. I will become very excited as I will have won my bet with Trey.

 

Note: Do not try this at home. Only professional drivers should attempt what I am doing. 

[snowbear]

Okay, I gotcha.  Good luck with that!   lol 

 

My Onc and I talked yesterday about stopping TKI's *someday*.  At diagnosis, my PCR was 22.5% and had only gone down to 19.5% at 3 months.  It took four months to attain hematological remission.  She said if I don't make better progress with the Gleevec by the end of the year, she will switch me.   She also talked about the possibility of never reaching MMR, but if the CML is stable and Gleevec is well tolerated then leaving it be rather than switching meds and risking more severe side effects.  From what I've read about Sprycel & Tasigna, I would just rather stay on Gleevec even if it's for a longer time than I would with one of the stronger TKI's.

[scuba]

Okay, I gotcha.  Good luck with that!   lol 

 

My Onc and I talked yesterday about stopping TKI's *someday*.  At diagnosis, my PCR was 22.5% and had only gone down to 19.5% at 3 months.  It took four months to attain hematological remission.  She said if I don't make better progress with the Gleevec by the end of the year, she will switch me.   She also talked about the possibility of never reaching MMR, but if the CML is stable and Gleevec is well tolerated then leaving it be rather than switching meds and risking more severe side effects.  From what I've read about Sprycel & Tasigna, I would just rather stay on Gleevec even if it's for a longer time than I would with one of the stronger TKI's.

 

Everyone has to do with what they feel comfortable. There are two key benchmarks - reaching CCyR (no CML cells under the microscope) and then reaching MMR - reaching a major molecular remission. Reachin CCyR pretty much insures you won't die of CML. Reaching MMR - gives you a shot at functional cure (CML keeps decreasing below a maintainable threshold by the disease - Trey's "burnout" theory).

 

I found Gleevec "annoying". I had to take it with food or else mild nausea would set in. And I needed full dose which dropped my PCR like yours, but not enough. Switching to Sprycel knocked PCR down significantly, but I don't know if it was Sprycel alone since I started Curcumin at around the same time. But I tolerate Sprycel very well and on very low dose. There was no way I could go low dose with Gleevec. It wouldn't work (counts went up).

 

Tasigna is similar to Gleevec and binds to the ATP sites in the CML cell better - result is better response. Sprycel works differently and attacks at the higher order cells giving the system a chance at wholesale wipeout of the disease trunk. 

 

The good news about Gleevec is that it has been around for a long long time now (hard to imagine) in comparison with the newer drugs;  so there is much learned on its safety profile and effectiveness. In addition, it will be coming off patent soone which will drop CML prescription costs from thousands to hundreds of dollars. That alone is significant.

[Frogiegirl]

Huh??? ruh row scoobs! From thousands to hundreds of dollars! Dang that would be amazing. .......had to re-read that a few times. Even if it doesn't happen it makes me smile thinking about it. ...