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"Undetected"

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I wanted to share with this forum my latest PCR results.

I remain "undetected" as of my just recently taken September PCR test. My last test was six months ago and it too was undetected. I was undetected last year also.

I have to decide if I want to stop taking 20 mg dasatinib and test remission durability.

I have done several fasting episodes and of course take Curcumin and vitamin D3 daily. But success won't be known until I stop dasatinib.

To be honest - my decision has nothing to do with relapse risk - zero.

It has to do with M.D. Anderson parking and traffic!!!

If I stop therapy, I will have to visit M.D. Anderson once a month for tracking. It's horrible driving, parking, taking the elevator to the 8th floor and then waiting to have a needle stuck in you. Twice a year was fine (since I am PCRU) - but without drug, they will want to see me every month.

I wonder what the people on Xitar would do .... ?

Scuba, what a nice problem to have!  This is great.  I vote, selfishly, that you try it, because it would be data for the question of, if someone fails TFR once, can he have success with a second try?  We will need to know, going into the future, why this works for some people who have been undetectable for quite a bit of time, but not for others who have been undetectable for an equal amount of time.  What is (or are?) the deciding factor(s)?

Scuba for Guinea Pig!  Practice meditation while sitting in traffic . . .

Seriously, though - SO happy for you!

 

It’s clear to me that I’m no longer welcome here.
Congratulations Scuba, on your progress.
I also am undetectable. After two years of Spycel.

Good luck to all of my friend soldiers in the CML army.

Romo

Romo

I haven’t been on here much the last few weeks as I have had family visiting. Just checked in and saw your comment . I love your posts  and can’t believe you aren’t welcome here. This is such a great community. Please stay. 

Also Congratulations on being undetectable !

Scuba great news - wishing you the very best in this next stage of your journey. Hoping Paul will follow you one of these days!

louise 

 

Romo - ???????? Did I miss a fracas?

What are you talking about? Of course you're welcome here. I think it's just a misunderstanding. Sometimes text communication doesn't have the intended tone after going through cyberspace!

Congrats on continuing undetected Scuba.  I was recently changed to twice a year testing because of sustained (15 months) PCR at <.003%, so not undetected but close enough that my oncologist is comfortable with that testing interval.  Should I be?

Anyway, you have to try cessation for the reason kat indicated but also to get confirmation of your fasting theory.  We all want to know if that works or not.  My prediction is you will try - let us know.

Romo.... not sure why you feel you are not welcome on this forum! Please continue to post- you are clearly a favourite (one of mine anyway) - I enjoy your sense of humour and your insights in to what it is like to live with CM.

Sandy

What Romo? I must have missed something. 

Best with whatever you decide to do but I hope you will stay on here

Best

Chrissie

My oncologist at M.D. Anderson told me he will support whatever decision I make (i.e. write the protocol for monthly PCR testing)....

however ...

I asked him what he would do in my shoes and he said,

"The standard is at least 2 years of undetectable transcripts ... our data shows much lower incidence of relapse if it is 5 years. If you are asking what I would do if I was the patient, I would never stop. But again, this is an individual preference decision."

Interesting that if he were the patient he would never stop - he once told me that we (meaning the medical establishment) don't ever cure cancer. It simply will go into remission and then who knows. There is no test for "cure". I believe, however, that cancer is a failure of our immune system since cancer cells are created all of the time (aberrant gene mutations). It is true that those of us who have been PCRU for over two years, 45% are able to remain drug free - but they will always be tested and never assured of "cure". But they do get their 'get out of CML card'. one out of two not bad.

The debate in my mind is whether to keep taking my low dose and go 5 years (his data suggests best odds of success at five year point) or to stop in March at the two year mark and see how I do. I'll have one more 3 day fast under my belt by then. (by the way - I look good. back to grad school weight).

And Romo - we love you - don't go.

I thought the Brits didn't like people from Xitar?  That's one of the reasons we fought the war for independence.

If I read DESTINY results correctly, length of treatment and >MR4 were independent predictors of cessation success after first reducing dose by 1/2 for a year - 72% of these folks were still MMR or better 2 years after cessation.  

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success? Would he consider <.003% the same thing as undetected?  Thanks

And Romo, we Americans love you!!!  Don't go anywhere

This question of TFR probability and the factors which influence it, arising from the Destiny trial, is one of the main themes of the CML patient day on Saturday. Prof Clarke from Liverpool is the lead author on the papers and is going to take us through the results and interpretation. Those of us who are lucky enough to be able to attend will bring back what we can and share. For those who can't be there Prof Clarke is due to start at 2.15pm UK time, but at 2pm Prof Copland from Glasgow is talking about updates on all the clinical trials. There is a link on the page for the patient day for the live streaming of the sessions.

Will those of us in the USA be able to stream thru the link?  Gitel

Yes, there should be no geo-blocking at all.

David. 

God help you make the right scuba decisions so you get the best results!

Xitarians are extremely smart. That's why they are here and we're not there. You don't see Earth people getting to Xitar? We don't know how. But Xitarians figured out how to beat the space-time continuum and travel to Earth. Amazing people, these Xitarians. And good-looking too! That's why they fit in so well.

Oh... and Xitarians who get CML - get to PCRU near instantly on low dose TKI's. Lucky them. With no side effects.

Scuba, it is a very interesting problem to have. Why not trying less than 20mg for you? For example, 20mg every other day?

What we know for sure is that at the beginning of our disease, one cell got the 9-22 translocation and begun to multiply without control. And we know that at this point, our immune system could not stop it. Why our immune system would be able to do it after years of TKIs treatment? We are taking the risk of recurrence at any point. To go from MR5 (or PCRU) to MR3, it would take 2-6 months if the disease comes back. So, one would need to continue to do pcr at least, every 3 months and be worried every time, because we have 50:50 chance at each test... 

Personally, I am not at the point of stopping. I am taking 50mg for 6 months and so far my pcr continues to go down. I see lowering more at one point when I am sure that 50mg is enough. And I see keeping the minimum of Sprycel as a safety net against CML.

Karinne

 

Hi Karinne,

Actually - it would take a lot more than "one" cell mutating into the 9:22 re-arrangement producing the bcr-abl cancer gene to get CML established. Theories on CML initiation involve radiation exposure or some other trigger that causes many CML stem cells to be created at one time (probably millions). This CML niche is then able to produce enough immune inhibiting proteins which tell the immune system to stand down and not attack it. It is a self regulating system to prevent the immune system from attacking normal tissue (as it does do in autoimmune disorders). Once CML cell does not produce enough "stand down" protein to prevent immune system attack. Normal  - healthy people it is theorized produce CML stem cells all of the time - but one at a time so disease never gets started.

Once TKI's help get CML back under control with a great reduction in the CML stem cell burden, at some point there is too few CML cells left to prevent T-cell immune attack. This is the theory on why some people who achieve PCRU for two or more years are able to stop treatment with success (45%).

There is the psychology factor too. Once one stops taking their TKI to "test" remission ... it can be unnerving.

 

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success in cessation attempt? Would he consider <.003% the same thing as undetected?  Thanks

cmljax - He did not provide a source to me, just told me via email on the 5 years being best (instead of two).

He would consider PCR < 0.003% as the same as undetected. Any IS value < 0.01% is indistinguishable from PCRU due to degree of false positives at this very low detection level. However, I was < 0.01% for several years before finally being reported as "undetected". I do not know if the lab simply made a change in their reporting where any level below 0.01% is reported as undetected or it is a true "undetected". Either way, my PCR has been consistent now for a year and a half at undetected.

My own personal thinking is that my CML stem cell population is greatly diminished. The only way bulk leukemic stem cells (LSC) get eliminated is when they divide (become susceptible to TKI's). Normally LSC's are quiescent until a need for blood replenishment is signaled causing LSC's to enter the dividing state. Triggers for this are blood letting (sudden reduction in circulating blood as would happen in an accident or sickness) or as I recently reported, fasting of 3 days or more. As we are not permitted to donate blood and I have no intention of cutting my wrists, the only way to induce LSC division is through multi-day fasting - which I did twice this past year.

Over time LSC's are wiped out or at least reduced to such a low level that the immune system keeps them in check. The only way for me to know for sure is to stop taking Dasatinib 20mg and test monthly for loss of remission. I am getting very close to that decision even though my doctor mentioned he would never stop taking a TKI if he had CML and was PCRU. Of course - he never experienced the side effects. He might change his mind if he was a true patient instead of a hypothetical one.

Thanks Scuba - thought this would be your answer.  By the way, I listened in on part of the UK CML conference this morning, and the doc reporting on DESTINY results indicated that he thought the reason why 72% of the MR4 or greater participants were still TFR after 2 years was because LSC's were first coaxed out of quiescence by the 50% dose reduction that preceded cessation for 1 year.  Not sure I understand why this would not also work for those who began trial at only MMR (MR3) as those particapants only had a 38% TFR rate after 2 years which is similar to many of the other stop trials. The same doc also said that their data suggests the sweet spot for stopping was 7 years of treatment versus 5, but that they were still doing the statistical analysis to determine if that was different for the >MR4 cohort versus the <MR4 cohort.

My onc is willing to let me try at three years of treatment which is still a year away for me and assuming I remain at least MMR.  I have been <.003% since April 2017.  I am not sure I would try cessation unless I remain at least MR4, but now I am also thinking that I might wait more than 3 years due to this latest data.  It's a hard decision.  I think I will try to stop at some point if I maintain my current response because I am not side effect free even at 25% dose and I'm pretty sure there are other adverse effects that I do not feel.

Good luck if you decide to try - I think you will and I know you will keep us informed if you do.

I'm conjuring up an even smaller 10mg Sprycel tablet for you in my imagination Scuba so you could try 10mg per day for six months before quitting completely.

Also wondering about you getting your blood drawn locally and zoomed over to MD Anderson by special courier to save you having to face the traffic.

We all wish you well with whatever you choose. You've been such an inspiration to us. I got serious about fitness thanks to you posting about your own exercise for cardiac health approach. Very grateful.