40 replies to this topic

[Gail's]

So I'm almost 5 months into my journey. It scared me when I read your plan to stop the TKI Scuba. But now, after reading the preliminary trial results in Europe and hearing from members here, I feel like I could be in the group who try stopping. Of course I'll continue testing too but would like to try someday. I was reading about the sokal scoring and the eutos scoring. Do I have it right that sokal was pre TKI and eutos after? I don't know how enlarged my spleen was, but based on a very conservative low measurement my counts made me intermediate to high risk. I read one study of cessation that only included low sokal patients in their trial. Does anyone know which system is used for determining risk now with TKIs and how it's used for inclusion criteria?

[gerry]

Hi Gail,

 

I'm not sure that low sokal scores mean anything for stopping - Chris and Joel stopped and they had enlarged spleens http://community.lls...een#entry164194

[AllTheseYears]

My question involves the "GoodbyeTKI" protocols:  Will insurance pay for monthly PCR testing, as well as the extra doctor fees without being in a trial? Or, do you take on these expenses yourself?  Do you still get those irritating calls from your TKI supplier asking why you aren't ordering your TKI?

[scuba]

Monthly pcr testing is cheaper than the tki no issue with insurance since I am having a drug interruption. I have had those before with even more testing.

Pharmacist did want to keep pushing the drug and I had to stop them. Dr changed my prescription to a hold.

[mikefromillinois]

My question involves the "GoodbyeTKI" protocols:  Will insurance pay for monthly PCR testing, as well as the extra doctor fees without being in a trial? Or, do you take on these expenses yourself?  Do you still get those irritating calls from your TKI supplier asking why you aren't ordering your TKI?

I'm in a trial right now.  (See post earlier in this thread)

 

All of the trial bloodwork is "billed to the trial" and not to my insurance company.  The same goes for most of my doctor visits related to the trial.  My trial doctor told me that over the three year duration of the trial "only a few" visits will be billed to my insurance.  I'm guessing that these would be my normal visits that the insurance would pay for if I was not in the trial.

 

I can't imagine that my insurance company will complain about the regular ofice visit charges since my trial participation will be saving them about $8,000 a month in medicine costs.

[AllTheseYears]

Thanks for the responses regarding my query about insurance.  I now have more information now to present to my onc during my visit next month when I suggest/tell him I plan to stop my TKI. And....I have more info for questions regarding my stopping on my own vs. trying to get into a trial.  I'm leaning away from a trial.

 

Yeah, getting off Gleevec should save the insurance company money, but my experience with insurance companies has been remarkably bad.  Let's just say common sense doesn't rule. FYI:  I've been undetectable for nearly a decade.  My take now is that my TKI is my problem. Just tired of the whole thing. With the new data, I feel much more confident about my (near) decision.  Again, thanks for your replies.

[gerry]

Hi Alltheseyears,

 

Good luck with whichever way you decide to go.

I read all the information and figured it was safe enough to have a go, if the CML came back (comes back) I would return to Gleevec.

[CallMeLucky]

This is truly awesome Michael, blaze the trail!

[Gail's]

Gerry, I had run across a TKI stop trial that required a low sokal score to enroll in the trial. I can't see how it would make a difference since the sokal was developed for determining risk pre TKI. But looks like somebody counts it as meaningful. By the time I reach pcru, I'm sure the trial results will be in and cessation guidelines will be written. I'm grateful to the trial participants and all you folks pioneering cessation personally.

[Billie Murawski]

Gail,

 It hasn't been that long since your dx please don't get all excited about stopping your tki soon.  For now just make your goal to get on as low a dose as possible.                                      Billie

[scuba]

This is truly awesome Michael, blaze the trail!

 

Thanks Gary - I'll keep this going unless and until there's a change. It does seem the monthly tracking is a good protocol.

But I did trade one side effect for another...

 

more frequent parking at M.D. Anderson and elevator to the eighth floor!

 

Hopefully my experiment will be successful and I can reduce visit frequency in a few months. I have other things I need to do with my time as you certainly know. 

 

All the best!

[Gail's]

Billie, good advice. I know I'm being impatient but I'm just excited that there could be a day when we don't have to face this crap anymore. I would really like to not have to pay big drug co pays when I retire in a few years.

[PhilB]

Congratulations Scuba that's great news!

 

Just to clear up the confusion around me, I have NOT stopped taking the pills.  What I've done is make a conscious decision to ignore my CML completely and get on with life (which is why I'm not about on here so much).  I still haven't quite worked out how to square forgetting CML with remembering to take the tablet though, leading to frequent mid-afternoon cries of 'Sh#t!'  followed by swallowing my Gleevec without food, often with explosive repercussions.

 

I may have a go at dose reduction if my recent drop to 4-and-a-bit logs holds, but no plans to stop unless I have stable PCRU as far too scared.  In summary I'm a chicken playing at being an ostrich.

[scuba]

Congratulations Scuba that's great news!

 

Just to clear up the confusion around me, I have NOT stopped taking the pills.  What I've done is make a conscious decision to ignore my CML completely and get on with life (which is why I'm not about on here so much).  I still haven't quite worked out how to square forgetting CML with remembering to take the tablet though, leading to frequent mid-afternoon cries of 'Sh#t!'  followed by swallowing my Gleevec without food, often with explosive repercussions.

 

I may have a go at dose reduction if my recent drop to 4-and-a-bit logs holds, but no plans to stop unless I have stable PCRU as far too scared.  In summary I'm a chicken playing at being an ostrich.

 

Thanks for clarifying and setting the record straight! We had a bit of a tussle on the Forum of late regarding fear and no fear regarding CML. It's quite understandable. No minds were changed, but life goes on as you say. Much progress continues to be made in CML research. At your deep response level I am sure you know your odds of progression are zero (or near zero if you include cessation tests). I don't have a fear of CML any longer as you might discern. It is a 'mind over matter' thing I confess. Like you - earlier in the game, I decided - 'so, this is the end'. I even thought of spending my money on exorbitant trips and writing a last check assuming I was going to be checking out. Then it dawned on me - people are surviving this thing in huge numbers. Just look at this forum compared to the other cancer forums. We talk about side effects; they talk about dying. My doctor at M.D. Anderson is the one who told me, "you will die of something else, not CML". That was clarifying for me. It meant I had to keep working.

 

And then - to stop taking the life saving drug.

 

The first night that I deliberately did not take my Sprycel 20mg. tablet - I thought to myself - here we go. Down the rabbit hole out of the matrix into the real world. Each day was thought provoking ... "could Trey be correct?". My wife quoting Trey was almost unbearable. Then the second night and the third leading up to my first PCR test. That was like the first test ever - and it came back "undetected". That was big. I got on the bicycle and found myself continuing to peddle. That jubiliation faded a bit until the second test and it showed "detection". Damn...I thought - it begins (the inevitable PCR climb) - but I believed my gut and my research that loss of MMR is what is important, not a small (within error range) uptick, so I stayed the course. And then, just recently, month 3 came and back down to "undetected". This test was big. CML is indeed a slow disease when in chronic phase at least for me. If it is going to expand, I'll catch it with one of these monthly tests I thought.

 

Because I test monthly and I now have personal experience on how my body is reacting to cessation, my cessation fear that I had a couple of months ago is gone. I'll keep testing this way and hopefully MMR/PCRU continues. The longer it continues, the higher my confidence will be that my immune system has the upper hand. 

 

But am I cured? Could I ignore the fact that I have/had CML and no longer visit the lab for PCR blood draws? Not a chance. At a minimum I will have to go every six to 12 months for a long time before I would consider myself rid of this. Because my body developed CML - it's probably still there, somewhere in the bone marrow niche is an LSC quiescing ... waiting for the right moment to expand. It's my belief, however, that should it do so - its progeny will get killed without a TKI present. In the past I needed a TKI to do it. Now I think my T-cells are getting up to speed. 

 

Believe me, Phil, having your wife quote Trey is worse than taking the drug.

[PhilB]

Having your wife quote Trey at you is one of those legal grey areas.  It would be good enough in a divorce court, but you probably wouldn't get away with it for a justifiable homicide plea.

 

I'll have to dig out that fear discussion.  For me, I'm happy that I have a much higher risk of drowning while kayaking or being killed whilst cycling than of dying from the CML (indeed only today I got a nice $2,000 insurance payout after being hit by a car whilst cycling) and so I have no real fear of the disease any more - as long as I keep taking the tablets.  I can even miss a day without freaking out now, but I am a long way from convinced on where the odds stand on cessation, especially given how long it has taken me to get a deep response.  That still feels a bit more like cycling down the freeway at night with no lights. 

[scuba]

Having your wife quote Trey at you is one of those legal grey areas.  It would be good enough in a divorce court, but you probably wouldn't get away with it for a justifiable homicide plea.

 

I'll have to dig out that fear discussion.  For me, I'm happy that I have a much higher risk of drowning while kayaking or being killed whilst cycling than of dying from the CML (indeed only today I got a nice $2,000 insurance payout after being hit by a car whilst cycling) and so I have no real fear of the disease any more - as long as I keep taking the tablets.  I can even miss a day without freaking out now, but I am a long way from convinced on where the odds stand on cessation, especially given how long it has taken me to get a deep response.  That still feels a bit more like cycling down the freeway at night with no lights. 

 

"That still feels a bit more like cycling down the freeway at night with no lights. " ... or Scuba diving at 80 feet at night and both your light and your buddy's light goes out. Knowing which way is up is a lot of fun. 

 

I'm taking it one month at a time - no delusions. If bcr-abl pops up - then it's back on the drug. I feel good that my response will be the same (PCR drops back down). But each month without the drug and lessening anemia is a gift. Of course I could say you don't know until you try - but then again - if I had known my light was going to go out, I would not have jumped in the water and descend to 80 feet in the first place.

 

(by the way - knowing which way is up is not easy - can't see your bubbles and only the faint light of the boat at the surface guides you. Thank God the water is clear for the diving I like to do. You can't panic and you have to go slow - very slow since seeing your gauges is not easy - like impossible. I bring two lights now. Night diving is outstanding).

[PhilB]

###Warning boring digression to non scuba divers###

I'm someone who never used to night dive without a backup torch and that probably explains a lot about my attitude to risk.  Then again I used to do a lot of UK diving with strong currents and low viz so you really don't take any chances with your kit.  Your story made me remember one dive I had where for various reasons I ended up doing a 1 hour high speed drift dive solo in the dark - it was daytime but so murky there was no light penetration to the 45 foot seabed.  After an hour in which my torch had found 3 small fish and 2 crabs I decided to call it a day and was faced with the fact I needed both hands to reel myself up to my submersible marker buoy and so didn't have one spare to shine the torch on the dive computer to monitor my ascent rate.  No choice but to let the torch dangle and just reel in slow and steady whilst negatively buoyant.  After a few minutes of this I stopped winding and checked the computer.  I was really quite surprised that having started at 45 feet, just above the sea bed, I was now in mid-water but 140 feet down.  I'd hit a trench and pendulumed down under my buoy.  Oops!

So looking forward to getting back to diving when the kids grow up - my very first post on this forum was to ask if Glivec was okay with diving.

[Marnie]

And, if I remember correctly, that regressed into getting one's wetsuit off quickly enough to avoid the inevitable shart attack, which then led to the discussion of shart attack vs. shark attack. 

[Pin]

Fascinating stuff guys - I'm following these personal trials with great interest, as are we all! Phil - I didn't think you had stopped (yet!), it's nice to hear from you again anyway - the legal grey area is hilarious!

 

So, I have a question for you, Trey and Scuba - how long before all LSCs are likely to be gone? I only ask because maybe it's a case of being a bit more patient with this and staying on our treatment just a bit longer to get more benefits in the long run. Maybe it's a question we can't answer either, there are those cases of people having BMTs and the CML coming back after decades - now that's just weird - LSCs hiding deep in the marrow? I suppose so. Hmm...

 

What I also would like to know is - what is your opinion on someone like me stopping? Or asking for a dose reduction? I'm going to post this in the other thread though - as I don't want to hijack your personal one...

[Trey]

The theory of leukemic stem cell exhaustion is that leukemic stem cells might be driven out of existence by long term TKI therapy, which in my theory could cause them to divide into oblivion while trying to keep up with the TKI drug.  This would likely take several years past initial PCRU, although no one knows.  At initial PCRU the person still has at least a million leukemic cells, most of which are higher level since the TKIs keep the lower ones killed off rather easily.  It probably takes another year or two of TKI therapy past initial PCRU to get the leukemic cell count down to ultra low levels (thousands) since these last remaining leukemic cells are higher order precursor and stem cells (hardest to kill).  Some of the highest order leukemic stem cells could conceivably hide for years in the marrow niche where TKI drugs cannot go, coming out occasionally to divide, so having some level of TKI would keep those new cells killed off, while exhausting the stem cells since cells can only divide a certain number of times before they die off.  This is why I subscribe to the long term low TKI maintenance dosage to help exhaust all high level leukemic stem cells.  If it works, that is a real cure, and it is my personal track even though I know I would be able to stop TKI therapy and be drug free, which is not as important to me personally as it is to some people.  It's a personal choice.

 

We also need to understand that no one knows why cessation is possible for the 40% who have succeeded so far.  Is it a leukemic stem cell exhaustion for those who remained on TKI drugs well past PCRU?  Maybe.  Is it the immune system figuring out how to recognize the leukemic cells as enemy once the numbers are much smaller?  Maybe.  Is it something else no one recognizes?  Maybe.  Is it the leukemic stem cells hiding and regaining strength over a longer term?  Maybe.  Can a patient really live with detectable leukemic cells (MMR) for the long term without the CML some day regaining the upper hand?  Maybe.  No one knows. 

 

No one knows what is happening under either scenario, cessation or long term therapy.  So we each must make our own decisions.  The longer term risks are uncertain, which is why the trials are important.  There are some guidelines for success, but they remain unclear since people fail cessation who had seemed to be good candidates.  Many variables remain.  Some patients who were in cessation trials have relapsed after several years, although if proper protocols are followed they are fewer so far.  But there is no long term data.  So it is a good thing to have people engaged trying to develop the data.  However, no one can claim victory in the first quarter of the ball game.  There is a long road ahead, so there is nothing wrong with being patient.