74 replies to this topic

[knoppl]

There has been a fair amount of discussion on stopping the tki's. I have been approached by my hematologist to participate in a drug cessation study and if the pcr goes up I would start on spyrcel. I have been on Gleevec 400 mg since diagnosis in Jan 2010 and have been undetectable since 2011, I am so reluctant and scared to do it. I would feel better about participating in a drug reduction study instead. I guess I am curious about what others think. I have followed this site since diagnosis and think it is a great supportive place to be when those tougher moments arise. Today I see the hematologist for my usual 6 month follow up so I guess that is why I am here today and think the study will come up again in the appointment.   Otherwise I tend to live life trying not to think to much about having cml nor let it slow me down.

I am curious about what Trey thinks of cessation vs drug dose reduction? I know Trey has been on a reduced dose for years now and has had not problems. Also, to me 40% recurrence still seems risky.... Curious how long these studies have been going on? Is this stat on studies over 2,3,4 years?  Is there some place where I can do more reading on it. Thanks for any suggestions or thoughts.

[Trey]

I support cessation trials as a means of gaining research information.  I support those who participate.  They simply need to be realistic about the trials and chances of success.  The risk is low with proper supervision, but it is not zero.

 

The relapse rate is about 60% (not 40% as you stated backward), so about 40% success rate.  But the 40% success rate is for those who are very well qualified to participate.  The real success rate for all patients is somewhere under 20%.  Likely closer to 5% as Gerry quoted her Aussie Oncs who have assessed the likely success rate among all current CML patients.

 

There are no dose reduction trials that I know of, only individual Oncs reducing dosage and we hear back from the patients here.  I was likely the first to document my story and progress on dose reduction which started in 2009, and I maintained PCRU and reduced side effects to almost none (a few cramps remain).  Success for dose reduction appears to be very high, usually with maintained PCRU over many years and reduced side effects for most. 

 

There are several cessation studies you could review, but a good overview is here: 

http://www.cmladvoca...d-leukemia/file

All it will tell you is that on average about 60% relapse, most can recover status within a year although sometimes it can take years, the risks are low if properly supervised, no one knows why it is successful for those where it is successful.

 

The part no one can tell you about is how many will eventually relapse over future years.  Some certainly will.  CML is a very patient disease.  Some who had BMT transplants for CML have relapsed more than a decade later. 

 

There is no right or wrong answer, only what you believe is in your own best interests. 

Edited by Trey, 27 April 2016 - 02:13 PM.

[JRsBoo2]

There has been a fair amount of discussion on stopping the tki's. I have been approached by my hematologist to participate in a drug cessation study and if the pcr goes up I would start on spyrcel. I have been on Gleevec 400 mg since diagnosis in Jan 2010 and have been undetectable since 2011, I am so reluctant and scared to do it. I would feel better about participating in a drug reduction study instead. I guess I am curious about what others think. I have followed this site since diagnosis and think it is a great supportive place to be when those tougher moments arise. Today I see the hematologist for my usual 6 month follow up so I guess that is why I am here today and think the study will come up again in the appointment.   Otherwise I tend to live life trying not to think to much about having cml nor let it slow me down.

I am curious about what Trey thinks of cessation vs drug dose reduction? I know Trey has been on a reduced dose for years now and has had not problems. Also, to me 40% recurrence still seems risky.... Curious how long these studies have been going on? Is this stat on studies over 2,3,4 years?  Is there some place where I can do more reading on it. Thanks for any suggestions or thoughts.

I am not sure if I am one of the "fails" who has you worried.  But my two cents:  I KNEW I was going to relapse.  I knew it (I thought I would have more time off than just 6 weeks).  My onc knew it.  I still did the LAST trial.  I wanted to give back to the medical community, to allow them to study what happens.  I don't know your family situation.  I don't have children.  I do have a wonderful husband and dogs that I love to pieces.  I think not having children was the big issue for me.  While my husband and dogs would mourn me if something went colossally wrong, I wasn't leave children without a mother.  I don't have a lot of money to give to research.  I do have me to give.  So I gave me.  It is a hard hard hard decision to make.  

[Pin]

Psychologically, I would much prefer dose reduction rather than cessation - but there doesn't seem to be a research movement towards that. I am trying real hard to get my doctor to let me reduce.

[knoppl]

Thank you for the responses. The trial came up in my appointment today and my doctor and I had a good discussion. I am not ready to stop Gleevec even with the intense monitoring. I really commend those who do trial the cessation of the tki's. It is a tough decision and perhaps as more is known I will be more comfortable.  Thanks again for the input and support.

[gerry]

Psychologically, I would much prefer dose reduction rather than cessation - but there doesn't seem to be a research movement towards that. I am trying real hard to get my doctor to let me reduce.

Pin,are you PCRU yet?

[Pin]

Hi gerry! Wow, can't believe it's nearly been 3 years off for you now!!

 

My lab has only ever reported <.01 so I don't know. My last sample was sent off to Adelaide for testing (plasma etc.) so I imagine they'll do a PCR as well, that might give me a better idea. Although, they batch test so I'll probably waiting a long time for results!!

[gerry]

Just thinking if you could get a stable PCRU would help getting your doc to change their mind maybe.

Will be three years TFR in November, which must mean 5 or so years for Chris.

[VickiW]

(shhhh, sneaking in here.  Made it thru my first week TFR just fine, hubby I'm not so sure about  )

[gerry]

When is your first blood test?

[VickiW]

When is your first blood test?

May 25th.

[VickiW]

OK, I've been MIA since getting some pretty negative feedback for joining the TFR ranks back in April.  I just had to share the news tho, (drum roll please) I made it thru the BIG 6 month (actually 7) benchmark and still in remission and feeling like I have turned back the clock 10 years!  Muscle strength returning, essential tremor in right hand gone, neuropathy greatly reduced, off the metformin as my blood glucose is back to near normal after developing chemo related T2 diabetes, no more  balance issues, the list just goes on!!!

For those who are happy for me, thank you.  For those who still think me a fool, maybe I am but right now I am one very happy fool.

Ok, back to hiding.  Have a blessed weekend everyone!!!

[Buzzm1]

OK, I've been MIA since getting some pretty negative feedback for joining the TFR ranks back in April.  I just had to share the news tho, (drum roll please) I made it thru the BIG 6 month (actually 7) benchmark and still in remission and feeling like I have turned back the clock 10 years!  Muscle strength returning, essential tremor in right hand gone, neuropathy greatly reduced, off the metformin as my blood glucose is back to near normal after developing chemo related T2 diabetes, no more  balance issues, the list just goes on!!!

For those who are happy for me, thank you.  For those who still think me a fool, maybe I am but right now I am one very happy fool.

Ok, back to hiding.  Have a blessed weekend everyone!!!

Congratulations to you VickiW; really glad to hear the good news (i had wondered how you were doing with cessation).

[gerry]

Good news Vicky, can never stop getting tested just in case it pops its head up again, but definitely a good place to be. :-)

[Billie Murawski]

Just thinking if you could get a stable PCRU would help getting your doc to change their mind maybe.

Will be three years TFR in November, which must mean 5 or so years for Chris.

Oh gerry, I am so very happy for you! I can't believe it's been that long already. I'm going to have a glass of wine to celebrate for you!

[gerry]

I swear time goes by faster each year, Christmas is almost here and then it will be a new year. I am glad you're back on the board again, we've been missing your adventures.

[VickiW]

Thank you everyone!

 No worries about the continued testing Gerry.  I have an oncologist that is such a stinker that if I missed my  bloodwork/appt. (just this time he's letting me go back to a 4 month follow up again, with Qpcr of course) am fairly certain he would have me hunted down! No kidding    There was a mixup at the clinic once a couple years ago and after waiting for over an hour for them to try and work me in, my prelim labs were back and looked good (I was already in PCRU for a long time) and I decided to just leave and told them to call if there was a problem with the QPCR otherwise tell Dr Patel I'll see him in three months.  NOPE!  Found out later he let the girls know he was NOT happy they didn't get me in (we're a 2+ hr drive away ) and there was a phone message waiting when we got home that I had 2 weeks to get back there!   That's the only time in what will be 10 years next March that I tried to skip an appointment.  Heck, it took me over 6 years to get him to stretch my appointments out to 4 months instead of 3.  I think I  am only slightly older than him but I'll still bet I'm going to have to outlive him before he would let me go longer than this between appointments.  I am definitely not going to complain tho.  I know I shared the story on here years ago how if it weren't for him I literally would not be here now.  I am blessed to have wound up with one of the best way back when the "new" treatments were still unknown for most hematologist/oncologists.

[Frogiegirl]

Congrats VickiW!!! I guess this would be an appropriate place to jump in, being the cessation topic and all........So November 8th will be my jumping point for going off Tasigna. I'm going to move forward with our baby plans! My doc would like a two week wash out, and then let the "trying" begin   I'm scared to get harsh opinions on here, because I am not going into this clueless or delusional on "possibilities". I have my docs support( Dr. Deininger ) I really believe this is a personal decision. as it should be. its not for everyone. I have already warned those around me that I DO NOT want to hear any past tense phrases when I'm in the thick of it so to speak. When its done its done their is no going back, just moving forward as best as I can. Period. CHEERS here's to getting some good wine in before I cannot anymore

[Buzzm1]

Wishing you the best Frogiegirl!

[scuba]

Congrats VickiW!!! I guess this would be an appropriate place to jump in, being the cessation topic and all........So November 8th will be my jumping point for going off Tasigna. I'm going to move forward with our baby plans! My doc would like a two week wash out, and then let the "trying" begin   I'm scared to get harsh opinions on here, because I am not going into this clueless or delusional on "possibilities". I have my docs support( Dr. Deininger ) I really believe this is a personal decision. as it should be. its not for everyone. I have already warned those around me that I DO NOT want to hear any past tense phrases when I'm in the thick of it so to speak. When its done its done their is no going back, just moving forward as best as I can. Period. CHEERS here's to getting some good wine in before I cannot anymore

 

All the best - Jessica! You are going to do great. We want baby pictures. Take the monthly PCR tests and stay vigilant.

You have your doc's support - you have our support.