33 replies to this topic

[scuba]

Finally - after all of these years experimenting.

I reached a pretty significant milestone.

 

PCR is below threshold = undetected. From M.D. Anderson's labs no less. It's probably just below threshold, but at least the direction is correct. And on 20mg Sprycel.

 

The only thing I changed was I added a new Curcumin (I can hear Trey all the way from his side of Texas).

 

Now for the big decision.

[LivingWellWithCML]

That is wonderful news. Congratulations!!

So ........ stop TKI and PCR in 6 weeks (or 3 months)?

[pammartin]

Congratulations!!

[Lucas]

wow!! congrats, scuba!! gives us hope. i read that you failed gleevec but did great on sprycel!

[JPD]

What brand of Curcumin do you get?

[SUE]

Great news, Scuba.

Congratulations

[Trey]

Very good news.  It has been quite a journey.

 

I still don't think the curcumin had much to do with it.  I would rather see you stop the curcumin and keep taking the low dose Sprycel as a test. 

[JPD]

but is curcumin worth taking in general?

[scuba]

Very good news.  It has been quite a journey.

 

I still don't think the curcumin had much to do with it.  I would rather see you stop the curcumin and keep taking the low dose Sprycel as a test. 

 

Thanks Trey. I'll stop the Sprycel and keep taking the Curcumin! That's the decision I am going to make in about six weeks.

 

But the important news is that CML can be beaten back with minimal TKI. My blood counts are still very low for performance standards. I still have bone marrow issues that Sprycel may be causing (Trisomy 8 one year ago). But the 9;22 chromosome is on the way out.

 

Nice to see a zero.

[scuba]

but is curcumin worth taking in general?

 

I take Curcumin. Is it worth taking? Some do, some don't. I do.

But I can't recommend it one way or another. You have to come to that conclusion yourself.

Do a search on Curcumin and CML and for health in general. There are quite a few links.

 

Trey is a resident expert on CML on this forum. He has a deserved positive reputation and I have learned much from him. He is not convinced that Curcumin does any good for CML. I believe it does. And there you go.

[scuba]

That is wonderful news. Congratulations!!

So ........ stop TKI and PCR in 6 weeks (or 3 months)?

 

Decision will be made in six weeks. Tonight it was Johnnie Walker Black and a Montecristo #3 white. Nice celebration. No wine. How rare is that....

[hannibellemo]

Congratulations, Scuba! Question stopping the Sprycel so soon though - 6 weeks after your first PCRU? Am I missing something?

 

Have no opinion about efficacy of curcumin, just my experience and that was that within 10 days of starting a lower dose of curcumin (on 50mg Sprycel) planning on working up to your dosage I had a massive eye bleed. First one since Gleevec in 2009. My onc knew I was doing this so when I told him about it on my next visit he just casually asked if I thought there might be a relationship. I laughed as I had already stopped. I know I have "slippery" platelets from other issues I have had.

 

Glad you have no issues but curcumin isn't for everyone - not that you have ever implied that - I know you haven't.

 

Keep us posted you TKI rebel! 

 

Pat

[Pin]

Wow, that is quite a milestone especially considering the complicated fine tuning you have had to endure to get there. Congratulations!!

[scuba]

Wow, that is quite a milestone especially considering the complicated fine tuning you have had to endure to get there. Congratulations!!

 

I have a working theory that many in the general population have CML low level and don't know it. The mechanism for gene translocation (specifically the 9;22 one that creates the bcr-abl oncogene) is biochemically easy and must be occurring like crazy every day. In people without CML "disease", their bodies simply eradicate the aberrant cells - but - and this is my theory: eradication doesn't have to be total in order for the body to survive normally.

 

The question I want to answer is can I live with low level residual disease (undetected or not) without the aid of a TKI? I want to test that idea. There are numerous cases of CML patients going off their TKI (for various other reasons) and finding that their PCR levels did not change. They're living with CML without having to take a TKI.

 

Dr. Cortes told me that if sensitivity of PCR test were increased, many more people would test positive for bcr-abl in the general population. Many of the people who are "undetected" and no longer are taking their TKI (STIM trial) would find that they are no longer undetected. Now that's interesting - because Trey believes that one stem cell becoming bcr-abl leads to CML. I don't believe that. I want to test whether eradication is necessary for functional cure in my case. Obviously there is something in our CML bodies that enables bcr-abl to expand and lead to disease. We've lost the ability to defend against bcr-abl cells. Can the defense be re-acquired? I will test that.

 

Also - and this is where Curcumin, Vitamin D, and nutrition comes in. I believe nutrition can play a big role in assisting the body to manage bcr-abl either by search and destroy, improving T-cell response or down regulating the cells. Curcumin is a down regulator tool. It slows the cell division of bcr-abl which leads to necrosis. It's not a cure, but then again what is a cure? We don't have one. We have tools to manage the disease (TKI's), but I prefer a tool that is not toxic to the body.

 

One final point - when I started my journey on improving general health since CML diagnosis, I had a vitamin D check done. My levels were 17 ng/ml. Rickets territory. I love to Scuba dive, but I wear wet suits - so sun exposure was very low for me even though I am in the tropical sun. I have probably been low level vitamin D for many many years and didn't know it. Maybe being vitamin D deficient helped contribute to my losing the ability to defend against bcr-abl? I started a year ago to increase my vitmain D levels markedly using vitamin D3 supplements. I am now above 50 ng/ml on my way to around 70 ng/ml. Vitamin D is very important for immune health (http://www.ncbi.nlm....les/PMC3166406/). I wouldn't be surprised if substantially increasing my vitamin D level is a contributing reason why I am finally seeing zero's in my PCR report.

 

Also - Curcumin is not for everyone. But I do take it in 8 gram quantities every day for several years. I believe that Curcumin was the enabler for me to be on a small amount of Sprycel and have such a great response. But as Trey wrote here many times - the test would be for me to go off Curcumin and see if my PCR level goes up. I am going to stop Sprycel instead and see if my PCR stays the same.

[scuba]

Why am I willing to stop TKI:

 

http://www.medscape....warticle/818862

 

This follow-up study on the STIM trial suggests that even those of us who are MMR (in/out of "undetected" or low level (MMR) PCR, stopping TKI has a >60% chance of succeeding. This is enormous odds in our favor. Also - for those who lost MMR (~30%), every single patient who re-started their TKI regained MMR or CMR. Every one. What that means to me is ZERO risk that stopping my TKI will lead to accelerated phase, and fatal disease. It is just so likely NOT to happen - like Zero chance.

 

This is why I don't fear this disease. We have been blessed to have TKI's invented. Now we can fine tune and perhaps get to functional cure. Life without TKI but with a teeny wee bit of bcr-abl. 

 

I can live with that.

 

Michael

 

p.s. For Trey and Susan, our pioneers,  who have been CMR for years and years and years. Imagine not having to take Gleevec anymore - no more side affects - no more whatever else these man made chemicals are doing to your bodies and remaining CMR! Just a thought. Trey is probably cured outright And Susan absolutely is cured.

[Trey]

Michael,

 

You said: so-and-so "believes that one stem cell becoming bcr-abl leads to CML. I don't believe that."  But you don't say what you believe.

 

If a t(9;22) translocation occurs in a blood stem cell and it survives to populate many levels of leukemic cells which over time comprises the majority of WBCs, isn't that CML?

 

If not, what do you believe?

[scuba]

Michael,

 

You said: so-and-so "believes that one stem cell becoming bcr-abl leads to CML. I don't believe that."  But you don't say what you believe.

 

If a t(9;22) translocation occurs in a blood stem cell and it survives to populate many levels of leukemic cells which over time comprises the majority of WBCs, isn't that CML?

 

If not, what do you believe?

 

Trey,

 

I said: so-and-so (that'd be you) "believes that one stem cell becoming bcr-abl leads to CML ..." which I do not believe.

And you confirmed that in your note above (i.e. "...and it survives to populate many levels of leukemic cells".

 

The 'over time' comprises the majority of WBC's is CML ... yes sir, that is very true. However. what if, over time, it does not lead to the majority of cells being 9;22? Better still, what if, over time, it leads to only a low near undetectable level of cells being 9;22? Then is it CML? I do not believe it is.

 

I believe that 9;22 expansion leading to CML occurs when the immune system fails to check it. And that for as many as 2/3 of patients who achieve MMR and then stop their TKI, they are able to stay disease free. That is what I want to test.

[Antilogical]

Chromosomes break and re-form all the time without consequence.  Only when it occurs in a stem cell might it lead to an ongoing issue.  Like CML.

My hem/onc indicates that they've been evaluating patient responses to meds, and they've learned that a deep and stable response may be just as beneficial as a complete response.  A patient whose CML is detectable but stable will not succumb to the disease any sooner than a patient that is PCR-U.

 

The Antilogical Corollary:  The day looks brighter when a box of chocolate sits before you.  Food for thought.

[Trey]

M,

 

If you want to say "it's not the fall that gets you, it's the sudden stop", then I understand your meaning.  Otherwise, I do not.  But it is a technical issue, not a substantive one.

 

My interest is your well being.  If it were me, I would not jump into stopping the TKI so soon.  I say keep the bass-turds on the run.

Edited by Trey, 21 September 2014 - 06:22 PM.

[jjg]

I stopped treatment 6 weeks after reaching PCRU (~4.5 log reduction) when we tried for a pregnancy. But for my age we would have waited much longer. As expected I relapsed straight away. Also as expected I regained response although it took over a year to get back to where I was. If your ultimate aim is to live without treatment the best odds recommend that you sit tight for a while longer. It's a boring thing to do. 

 

Normally to get from a theory to a human trial is a long drawn out process (& for good reason). It is kind of exhilarating to be able to just "see what happens". However, a trial of n=1, particularly where the n=1 has had such an unusual response to treatment, is not going to change the way CML is treated any time soon. So what ever you do is all about you. If you do stop we'll all wish you well and be interested to see what happens, but you should forget the excitement and do what is best for you.