25 replies to this topic

[Johnmontoya923]

Hello everybody,

Thank you all for your responses to my post. I would like to tell all of my new friends my experinces today this morning at the Mayo clinic, so Im going to start a new thread to avoid confusion.

Thanks again to all of my new friends.

[scuba]

HI RCT - yes it's me, Michael / Scuba - I log in with Scuba since that was somewhat unique. And I Scuba dive - so I remember it.

I have been on very low dose Sprycel now (20mg) for more than a year. I have no idea what my CBC (blood counts) are any more. It's been 3 months since my last test and they were low but stable at the time. Platelets around 100 and Neutrophils around 1.5. Dr. Cortes left it up to me whether I wanted more frequent CBC and I told him I'll get it done along with the PCR test every 3 months. I know how my body reacts when counts get low, so unless I feel that way - I have no concern (mouth sores, saliva level, bruises). My PCR at last read (few weeks ago) was 0.009 - so it's getting close to the detection limit assuming it keeps dropping.

I do take Curcumin - and there is an anecdotal correlation with my PCR deep drop, Curcumin and low dose Sprycel. I experiment with different formulations of Curcumin in order to maximize absorption (Curcumin in raw form is hydrophobic), but in all cases take enough Curcumin to equal 8 grams of regular Curcumin (non-formulated). My goal is to get to PCRU - maintain it for two test cycles and then stop taking Sprycel while continue to take Curcumin. I have no delusion about cure, but am hopeful that Curcumin can keep the disease in a residual phase without the need for a TKI. We'll find out. If not - then I just resume back on to the Sprycel since data shows that no one has progression who had been PCRU, lost it by stopping therapy and then re-start back on. The risk is small.

It would be interesting if your wife were to stop taking Gleevec and see if she becomes PCR positive again. You wrote that she went positive a few times so she may not be a candidate to stop. But if the side affects are a big problem, it may be something to consider.

My experience with all of this is that once we can get the disease beaten back to FISH = zero and PCR with a zero to the right of the decimal place, we're in a safe zone (or safer zone). And those who get to PCRU, have a shot at functional cure by withdrawing from treatment and see if they can maintain it.

(Interesting discussion on whether TKI"s are chemo or non-chemo. I have my own opinion of course. At the end of the day it's a drug that messes with one's biology. I want to avoid having to take it as soon as I can. If I am going to take any drug, I prefer it to be recreational so I can enjoy it. There's nothing enjoyable about Sprycel except the  knowledge it's keeping me alive)

[rct]

No, she isn't a candidate for stopping, not least of why being an immediate upward PCR while off Gleevec waiting for counts to come up.

I agree with you.  If it isn't chemo, how come so dang many people want off it?

rct

[Rissa]

Nice response Lucky.  You've been through a lot lately.  My sister-in-law lost her 18 year old daughter in a terrible car accident in June.  It has been heartbreaking for everyone in my family.  I don't know how my SIL is able to get through each and every day.  It's another reminder though that life truly is short and we need to make the most of every day. 

[CallMeLucky]

So sorry to hear about your niece, that is truly tragic.  I will be thinking about her mom and hoping she can find peace with this terrible thing that has happened.

[pamsouth]

Hi RCT,

You speak for many.  Call TKI/Chemo what you want.  There are alot of play with the words and  the definitions; treatment, disease, which plays into the political arena and into the research money and health care finances.  Regarding; Disability, Job, Insurance, etc.   I am sure there are thousands of disheartening stories, in regard to not only the side effect, especially the long term and elderly, but how does that all play into the political arena of what words are political correct to use, to get insurance for medical assistance; as in oncologist, drugs, labs, disability, etc.  If my doctor had been paying attention to my labs in 2002 I would have been diagnosed then instead of 2005 and eligible for disibilty,  but the primary doctor ignored a combination of things that were out of the normal range.  I flew to MDAnderson and the onc said CML had been working on me for years, yea I know I went back and got the labs in 2002. I was shocked, how the doctor could overlook the counts that were out of range.  Never did she give me the CBC lab or mention it.  Seems she was only worried about blood pressure and cholesterol.  She didn't advise me to have another CBC for 3 years, I lost the disability because I could not prove I had CML in the 5 year timeline from my last day of employment.  I took an early retirement due to health issues, I never dreamed is was cancer working on me.  For those on low dosage TKI they don't deal with the quality of life or long term side effects down the road and my road is not that long at age 64.   For those who have been on the higher doses they don't know the outcome of their health or quality of health several years down the road.  These drugs are studied a few short years, with how many people, and how long have they been out?  So who knows, only theory?  For me all the tki have their demons.  Why would I want to switch to a higher more powerful drug then Gleevec.  Do I need a match or a whole keg of dynamite.  A higher dose or more power drug would take all my counts down, as the CML is in all the blood, before it actually becomes a red cell or platelet or whatever.  Otherwise why do the TKI effect all your counts, not just the white cells.  My white cells were never high.  Two million platelets.  But that first year on Gleevec and Hydrea ALL my counts went low.  White cells a dangerous low, blood pressure a dangerous low.  Now I am seven year older, and I'm sure with age, CML, TKI, the body is much weaker and I don't intend on taking my counts down any lower or change to a more powerful drug, to lose what quality of life I have left.

You are right we are all individuals, I am not a statictic.  I think people are scared and pressure into taking newer patents and more powerful drugs for the purpose of research and financial gain.  Not all but a lot. 

I know the above risk of my statement, people thinking I way out in left field, but I bet there are a lot of unheard voice how there who are afraid to state their true opinions.  In the US our health care crises is real for many people and it is a mess.  Many people have lost a lot of their finances to CML and TKI and health care cost and lost of jobs.  Health care even in our government, there is much fraud.

Having said all that, I am thankful for my Gleevec, there could come a time I would need to change and for some people other TKI work better.  But I don't think I need a powerful dynamite keg to do the job the only requires a match.  I think there is a balance in the body, and when we kill to many cells, even though they are Leukemia (which they do have some value) then we are messing with other parts of the mechanics of the body.  For those who need to be a live research person, more power to them, but I do not.  I have talked to many other in health care, and they speak very softly as not to damage their reputation, speaking against or less so debating, those who are the experts or in authority.  My primary doctor said years ago we, health care profession, went to one extreme, then went to the other extreme, and hopefully down are becoming softer and going down the middle.  Makes sense to me.

PamSouth.