14 replies to this topic

[gabrielle]

My Oncologist said as my blood test have been excellent after being on Sprycel for 3 years and now in remission , I can go on a trial for 2 months drug free. Saw hhim yesterday, bloods still all clear so now starting 2nd month. I am so scared.I have had 1 plural effusion  about 2 years ago. My G.P. ordered an ecg as I have been experiencing heart palpitations and that showed a slight enlargement and also fluid around my heart.  I too have a rash on my chest from sprycel. I was diagnosed with  C.M.L. January 2012.

[mikefromillinois]

Congratulations Gabrielle!  Wishing you continued good health.

[Trey]

This is a temporary drug break to allow the conditions you described to clear up.  It sounds like a very good idea.  You do not want to allow fluid to build up around your heart and put pressure on your heart.  You should be fine, so don't worry.  You are doing the right thing.

[gabrielle]

Thanyou so much Trey . I will now try and relax. Also thankyou Mike for your good wishes.

[gerry]

I'm a bit confused about the doc's wording - are you off for two months only or if you continue to remain negative will you remain off the Sprycel for longer?

 

And if it helps any Gabrielle, I've been off my Gleevec for 21 months now and remain negative.

[gabrielle]

Yes Gerry, my Oncologist said that as my readings have been good for over 2 years he wanted to see if I could go off Sprycel . I am to have monthly blood test and then see him. My G.P. found that I had fluid and slightly enlarged heart, so I am hoping that all that will clear up. However, I am absolutely terrified [ although I did find Trey's answer to me] very comforting. It's great that you have been off T.K.I's for 21 months and I hope that you continue to remain negative. There is no doubt this is a scary disease and I am not really convinced I should be off my medication despite a host of symptoms. Reading posts here it seems as though most people are wary off coming off the medication. Now I am very worried , my family are not supportive and think that having C.M.L. is not that bad, compared to other cancers'. As you have been 21months off the drug do you take any vitamins etc. to boost your immune system . Did you find when you first ceased the tablets that you were a bit concerned ? I am not feeling, at this point of time really convinced I have done the right thing in agreeing to do this , and am feeling nervous and worried. Kind regards.

[Trey]

Gabrielle,

You certainly needed a drug break to allow the pericardial effusion (fluid around your heart) to subside.  It has already enlarged your heart somewhat, which shows your heart is under stress from the pressure caused by the fluid build-up.  The heart enlargement should return to normal over time after the fluid goes away. 

 

If you are saying this is a long term drug cessation (maybe I misunderstood what you meant by "I can go on a trial for 2 months drug free"), then I would ask how long your PCR has been undetectable. 

[gerry]

Hi gabrielle,

 

On the positive side you can restart your TKI if the CML shows up. People that I know of, that have stopped their TKI and had the CML return, have returned to negative usually by the six month after restarting their TKI. 

 

Due to reasoning above, I was no more concerned about my test results than the usual testing while I was on Gleevec. I also knew I would/will have to restart if something shows up.

 

I'm a bit of a supplement taker - was before CML and am still after, so no new items added.

 

You may find things get easier test wise as you hopefully progress through to the six month period. After that the chance of relapse starts to drop.

[scuba]

As I read your note, I sense two events happening - one is your Oncologist approved you stopping Sprycel because you have been in remission for several years. Second is your G.P. noted fluid build up around your heart. Are your two doctors in communication with each other so one knows what the other is having you do?

 

Regardless - stopping Sprycel is the absolute right thing to do regarding fluid build up. And the good news is you get to trial stopping Sprycel to see if you can hold remission. You should have your PCR tested once a month for a year or so to track any return of CML. Even if the CML shows up a little bit (you become detected but below MMR), you can still continue the trial for another month to see if a trend upward develops. Often, the one month blip disappears.

 

But - assuming you do have to return to Sprycel - I would caution against full dose. It will likely bring back the fluid effusion problems. A much smaller dose may be all what you need to keep you PCRU. I was on only 20mg of Sprycel and it was sufficient to drive my CML into remission. But I also made sure my vitamin D level was around 60ng/ml and I take plenty of Curcumin as well.

 

I have been off Sprycel for five months now with no change in PCR. My latest blood draw was this past Tuesday. If the result is the same, I will continue off drug and won't be tested for another two months. It's good that  you are testing "cessation" whether forced or voluntary. TKI drugs are toxic - and if our own bodies can take over immune surveillance that is all to the good. You may be one of the patients who can do that.

 

p.s. Dr. Cortes at M.D. Anderson told me that when he offers the opportunity to his patients to stop treatment (because of successful remission) and then test durability - 50% of his patients elect not to stop. It reminds me just how psychologically powerful the word "Cancer" is to many people. Having been diagnosed with "Cancer" leads to tremendous anxiety and fear in many people. So much so that when their own doctor - a renowned researcher in the field, gives them the o.k. to stop - 50% choose not to stop. Amazing. Our own Mr. Trey has been PCRU for years and years - and he too won't try cessation despite all his knowledge about the drugs, the disease and biology. Fear of cancer is powerful. I decided to take the "risk" and stop taking Sprycel. I suppose I fear the TKI more than I fear CML. 

[tiredblood]

Scuba wrote, "Our own Mr. Trey has been PCRU for years and years - and he too won't try cessation despite all his knowledge about the drugs, the disease and biology."

 

So Trey, what drugs have you taken and for how long?  What would it take for you to stop taking your TKI?

 

I personally don't see myself taking the TKI for the rest of my life, but am unsure where the line of demarcation would have to be for me.

[Trey]

http://treyscml.blogspot.com/

[scuba]

Scuba wrote, "Our own Mr. Trey has been PCRU for years and years - and he too won't try cessation despite all his knowledge about the drugs, the disease and biology."

 

So Trey, what drugs have you taken and for how long?  What would it take for you to stop taking your TKI?

 

I personally don't see myself taking the TKI for the rest of my life, but am unsure where the line of demarcation would have to be for me.

 

Trey will stop taking his TKI when there is a cure announced based on double blind drug trials where 100% of the patients who enrolled were cured of their CML. Cure being defined as "undetectable" on the PCR scale for a period of 5 years after "cure" therapy has been applied and concluded. Then ... he might stop taking his current TKI. But he can certainly speak for himself.

 

The current protocol for testing cessation is for patients to be PCRU for a period of two years. Then they stop therapy under doctor supervision which includes monthly PCR monitoring. Insurance company's are generally favorable to this because it saves them drug costs which are higher than PCR tests. If PCR rises more than one log or a patient loses MMR, therapy is restarted. Therapy restart is 100% successful (although there was one patient who progressed with a different Leukemia. All other CML patients who re-started regained their prior response).

 

But to tell you the truth - I don't think I'll ever feel cured. Even if a cure is announced and works - would you go untested after that? No matter what, I'll probably be taking PCR tests for the rest of my life cure or no cure. We developed CML once. Who's to say our body's are not prone to develop CML again (a new instance). Granted, once a year PCR test is o.k. with me. What's exciting is we do talk about cure, and drug cessation and living. I am very thankful for that.

 

Time for a nice XR-21 Johnnie Walker.

[Antilogical]

Trey's cessation criteria sounds pretty good to me.

[rcase13]

Yep that is my criteria!

[gerry]

I'd be happy to move to six monthly testing at 5 years, though that is still a discussion I need to have with my doc. He is happy for me to eventually move my testing to quarterly at the moment, so I might try for that at 3 years.