38 replies to this topic

[jlegakis]

What are the odds of developing Blast crisis and/or resorting to a transplant with all the TKI`S out there for a CML patient like myself? Aren`t those eventualities, so to speak, a thing of the past even if patient is resistant to treatment? Well, what are the odds? 1 in a 1,000? Or, higher? And, will there be an outright CURE for CML in a few years? What do you folks think? Scotland and Manchester researchers say YES!

[thatguy]

I mean, I've been told if I don't hit mmr by 18 months, they (my Onc and transplant team) want me to move forward with transplant. Granted, I'm 30 and not 60.

[chriskuo]

Progess is being made on trials for people with PRCU stopping TKIs.  A cure in a few years is very unrealistic if you are thinking of something that would be widely available.  If a cure is developed, the first cures may not help everybody, just as the results of current TKIs vary by individual. 

[chriskuo]

Thatguy -- is your doctor proposing a transplant before trying Sprycel or Bosulif?

 

As close as you are to MMR so soon, your docs are way ahead of themselves unless there are other factors involved.

 

You may easily break through MMR with another TKI.

[scuba]

I mean, I've been told if I don't hit mmr by 18 months, they (my Onc and transplant team) want me to move forward with transplant. Granted, I'm 30 and not 60.

 

You should switch drugs long before ever considering a transplant. Gleevec seems to be plateauing for you. Switch to either Tasigna or Sprycel and you will likely achieve MMR very quickly if not better. Your doctors are a concern.

[Trey]

The probability of CML disease progression is divided into two stages.  During the first roughly 2 years after diagnosis the odds of progression are "higher" (although only a few percent), since this is the period when any mutations will show up.  If the patient makes it past 2 years and is stable in at least CCyR the odds of progression drop significantly to very low numbers (well less than 1 percent).  The low percentages mean there are exceptions.  And for the cessation people this does not mean someone in CCyR can stop treatment and not have disease progression.  The percentages apply to continuous TKI treatment.

 

If a patient is stable in at least CCyR and is over 2 years post diagnosis then a transplant would not be recommended.  Don't ask Oncs who do transplants for their opinion because that is what they do and they do not see anything wrong with what they do even though they lose a lot of patients doing it. 

[thatguy]

Thatguy -- is your doctor proposing a transplant before trying Sprycel or Bosulif?


As close as you are to MMR so soon, your docs are way ahead of themselves unless there are other factors involved.

You may easily break through MMR with another TKI.

So my main onc, was about to do Bosulif 3 pcr's ago when I jumped from .663 to .781. I went from gleevec to tasigna at 9 months,and this jump occurred 4 months later, followed by decreased amt, one week later to .651, then 20 days later to .501. So likely just error margin. I'm going Tuesday for my 15 mo. Pcr, and still on Tasigna 800mg. Hopefully lower, near mmr. I deducted a Metamucil regimen I've been on for several years, hoping that may be the wild variable.

The transplant doctor is the one who stated if a second line TKI is failed, and mmr not reached (this meeting took place at 11 mo, when my most current Pcr was 1.719%, but the 12 mo. Pcr of 1.133% was pending, and not a factor in the meeting) with my age considered and remaining TKI options available, for successful long term treatment, he'd advise transplant- while in cp, as prognosis is better.


I'm in a rough place. I really hope this next test declines significantly, and accurately. I really don't want to have to consider transplant. BUT- they found 3 perfect HLA matches for me, I have no other Co - morbidities (knock on wood, Tasigna), and who knows where my United Health coverage off the exchange will go?

It's awesome having one of the most expensive serious diseases to treat, at 30 huh?

I'd go and get a neutral opinion from Deininger at Huntsman, before sct was decided on, unless bcr-abl took off running.

[gerry]

That guy - were you taking your metamucil close to your TKI, if you were then you were right to move it to a different time.

[gerry]

Trey,
Since I have been off a TKI for nearly 3 years wouldn't that make me one of the "cessation people". Or were you using it as an adverb and not a noun. Lol

[thatguy]

That guy - were you taking your metamucil close to your TKI, if you were then you were right to move it to a different time.

I wasn't cautious with timing no, and furthermore, id take it in semi-wreckless amounts. So I'm sure it had some bearing on absorption. Funny, the generic brand I take had no warning on the bottle, and I made my hospital staff and doc aware, at time of diagnosis and Gleevec commencement, and nothing was ever advised. I found the warnings online, 13 months later, kind of by epiphany.

[Frogiegirl]

Thatguy.....yes being 31 at diagnosis and having one of the most expensive diseases to treat is definitely a shocker. Deininger at huntsman is who I see:) I'm hoping for good numbers or lack there of for ya!

[gerry]

I wasn't cautious with timing no, and furthermore, id take it in semi-wreckless amounts. So I'm sure it had some bearing on absorption. Funny, the generic brand I take had no warning on the bottle, and I made my hospital staff and doc aware, at time of diagnosis and Gleevec commencement, and nothing was ever advised. I found the warnings online, 13 months later, kind of by epiphany.

I started taking psyllium husk (Metamucil) to help with cholesterol prior to CML (didn't work) but kept taking it, found it also helped with the gastro (made it a bit more solid so to speak) when I started taking Gleevec.

As you're now aware this stuff needs to be taken away from meds as it can stop absorption. My GP who recommended it for the cholesterol didn't mention anything about medication either, I had to google it myself.  

[thatguy]

Thatguy.....yes being 31 at diagnosis and having one of the most expensive diseases to treat is definitely a shocker. Deininger at huntsman is who I see:) I'm hoping for good numbers or lack there of for ya!

Thanks Frogie, he's supposed to be good. I had actually contacted his office 2 months ago and explained I'd be a cash client for a consultation, but never heard back either way. So, I was speaking off the cuff....I'D LIKE to see him if it comes down to it...if he will have me.... (lol) Thanks for the wishes!

[thatguy]

I started taking psyllium husk (Metamucil) to help with cholesterol prior to CML (didn't work) but kept taking it, found it also helped with the gastro (made it a bit more solid so to speak) when I started taking Gleevec.
As you're now aware this stuff needs to be taken away from meds as it can stop absorption. My GP who recommended it for the cholesterol didn't mention anything about medication either, I had to google it myself.

Yeah, Gerry. I was researching Tasigna characteristics and noticed that drug elimination is like 93% via fecal (sorry everyone), and then it immediately dawned on me...and it shouldve occured to me earlier, but common sense and I, have a love/hate kinda thing going on...

[thatguy]

Sorry JLegakis, I didn't intend to hijack the thread. I feel inclined to implore you, GO get a mutation analysis, and consider a drug change, if at all possible. I've felt your nerves for your last 3 posts, and you need to take care of this!

[r06ue1]

thatguy, unless you progress to accelerated or blast crisis, I would not even consider a transplant.  My Oncologist told me after I was diagnosed that the survival rate was 30% and another 30% after one year.  That doesn't sound too good to me.  

 

If you can maintain on one of the five existing drugs, then I would stick with those and wait for a cure.  You might even consider a trial (ABL001, immunotherapy and UK cure in 18 months) before going the route of a transplant.  

 

It sounds like your doctors want to sell you something that is very profitable for them.

[rcase13]

How much is age a factor? He is quite young at 30. Survival rates go way up for younger people don't they. I also thought there have been advancements in SCT and rates are better now.

 

Good luck thatguy keep us updated. It does seem odd we here of turtles everyday that have never reached MMR and are doing fine years later.

[Trey]

For some there is little or no choice, so BMT is the right choice.  For the rest, this is not a decision to be pushed into by transplant Oncs based on a patient not having an optimal response to TKI drugs.  Suboptimal in the age of TKI drugs is not failure, and it isn't even bad.  It is just suboptimal. 

 

It is not only the odds of not surviving a transplant which are about 30% with only slightly better odds for younger people.  There are long term impacts from the BMT, possibility of significant long term graft vs host disease, increased chance of secondary cancers, and the possibility the CML will not be cured since CML is the most difficult leukemia to cure by BMT. 

 

Odds of transplant Oncs wanting to do more transplants is about 100%.

[rct]

So my main onc, was about to do Bosulif 3 pcr's ago when I jumped from .663 to .781.

 

 

No onc my Mrs has ever seen, including Druker, would ever consider .663 to .781 a "jump".  Her current onc would call it "fuzz on the microscope slide" and chuckle.

 

Chronic.  Indolent.  Measured in a lifetime, not PCRs 7 and 20 days and a month apart.

 

I'd find a new doc if I was You.

 

rct 

[beno]

For what it's worth, my onc says she would never even consider a transplant until either blast crisis or you have tried all the different TKIs and not been able to control things.