30 replies to this topic

[scuba]

I just completed 8 months of no TKI (Sprycel) and received my PCR result for September. For the second time I had a spike in my PCR. This time to 0.05% I.S. scale. Although half a log below MMR, I thought this may be it and I am not able to hold MMR for much longer without Sprycel or some other TKI. I was preparing to re-start my low dose Sprycel and give up the cessation effort.

 

I had hoped that over time, I was either going to lose remission fast and have a clear answer to my test - or I would prevail and slowly see my PCR numbers fall back to PCRU and that would be that.

 

Instead, I am in a no man's land where my PCR's have slowly crept up (lost PCRU), but then fall back again - all within the margin of error of the test below MMR. Still - I thought, might as well re-start Sprycel. At least I won't have to park at M.D. Anderson every month - I can go back to 3 months. So I suggested to my Oncologist I'll need a new prescription.

 

And then a surprise - my Oncologist told me to continue like I am doing since I am below MMR and have had many months like this. "risk (to me) is negligible and if PCR pops above MMR then we'll re-start (and then try again). But after 8 months, you have a shot". The thinking is that the LSC's may burn out (Trey's theory that I happen to agree with). They want to see if this can happen with no therapy present, but with monthly PCR monitoring. He told me he has seen this many times now in cessation work. It can take years and 8 months is not enough. Most of these patients were forced to stop for other reasons and they observed they were able to continue off therapy and so they did with results similar to mine. I am an outlier only in that I deliberately stopped therapy.

 

Just when I was getting ready to throw in the towel - my doctor tells me I can keep going - He said I could re-start if my anxiety was high (he should know better on that one) and felt the need to re-start, but otherwise, he's good with what I have been doing. I am not kidding myself - if this doesn't work - then I'm back on Sprycel. Each month has been a gift. 

 

I know I have been a cheerleader of sorts and some felt I was a professor at "Cancer Cure University". I have posted here and shared thoughts on what I have been reading and learning. But I also read about the anxiety and pain others are feeling especially those who are not getting the kind of response that so many others achieve. I willingly stopped treatment to explore alternatives. I am sensitive to that. If enough forum readers want me to stop posting because my approach is not clinically tested, validated and approved - I will stop posting. I won't say my approach is easy on the mind - it was for me because I fear the TKI more than the disease. But that's just me. My reading now is focused on Leukemic stem cells and I will try anything (natural) to go after them. Staying in this "no man's land" is not definitive enough.

 

However, on to month nine.

 

Thank you to all who have encouraged and supported my efforts. And to Trey, I have enjoyed our debates.

 

 

Disclaimer: I do not recommend, encourage or suggest to others to do what I have been doing without consultation and agreement from your doctor. CML is a serious disease and not to be taken lightly - ever.

[simone4]

Scuba, what a good outcome, your onc. suggests you carry on.

(If parking every month at MD Anderson is all you have to deal with

then so be it.)

 

I am afraid of the TKI's as well. The Gleevec has destroyed my

thyroid and now I am so allergic to it, I have to take anit-histamines

to stop the itching.  I'm sure my onc. will switch me to Sprycel

and that has me so anxious I can't sleep.

If only I was in your shoes. 

 

Take care. Thanks for keeping us informed.

Simone

 

 

[acl]

I just completed 8 months of no TKI (Sprycel) and received my PCR result for September. For the second time I had a spike in my PCR. This time to 0.05% I.S. scale. Although half a log below MMR, I thought this may be it and I am not able to hold MMR for much longer without Sprycel or some other TKI. I was preparing to re-start my low dose Sprycel and give up the cessation effort.

 

I had hoped that over time, I was either going to lose remission fast and have a clear answer to my test - or I would prevail and slowly see my PCR numbers fall back to PCRU and that would be that.

 

Instead, I am in a no man's land where my PCR's have slowly crept up (lost PCRU), but then fall back again - all within the margin of error of the test below MMR. Still - I thought, might as well re-start Sprycel. At least I won't have to park at M.D. Anderson every month - I can go back to 3 months. So I suggested to my Oncologist I'll need a new prescription.

 

And then a surprise - my Oncologist told me to continue like I am doing since I am below MMR and have had many months like this. "risk (to me) is negligible and if PCR pops above MMR then we'll re-start (and then try again). But after 8 months, you have a shot". The thinking is that the LSC's may burn out (Trey's theory that I happen to agree with). They want to see if this can happen with no therapy present, but with monthly PCR monitoring. He told me he has seen this many times now in cessation work. It can take years and 8 months is not enough. Most of these patients were forced to stop for other reasons and they observed they were able to continue off therapy and so they did with results similar to mine. I am an outlier only in that I deliberately stopped therapy.

 

Just when I was getting ready to throw in the towel - my doctor tells me I can keep going - He said I could re-start if my anxiety was high (he should know better on that one) and felt the need to re-start, but otherwise, he's good with what I have been doing. I am not kidding myself - if this doesn't work - then I'm back on Sprycel. Each month has been a gift. 

 

I know I have been a cheerleader of sorts and some felt I was a professor at "Cancer Cure University". I have posted here and shared thoughts on what I have been reading and learning. But I also read about the anxiety and pain others are feeling especially those who are not getting the kind of response that so many others achieve. I willingly stopped treatment to explore alternatives. I am sensitive to that. If enough forum readers want me to stop posting because my approach is not clinically tested, validated and approved - I will stop posting. I won't say my approach is easy on the mind - it was for me because I fear the TKI more than the disease. But that's just me. My reading now is focused on Leukemic stem cells and I will try anything (natural) to go after them. Staying in this "no man's land" is not definitive enough.

 

However, on to month nine.

 

Thank you to all who have encouraged and supported my efforts. And to Trey, I have enjoyed our debates.

 

 

Disclaimer: I do not recommend, encourage or suggest to others to do what I have been doing without consultation and agreement from your doctor. CML is a serious disease and not to be taken lightly - ever.

Hi Scuba, Congratulations you completed 8 months with no TKI's, I wish that I could do the same. Thank you for keeping us updated it is appreciated! Have a wonderful Sunday.

 

acl

[scuba]

Scuba, what a good outcome, your onc. suggests you carry on.

(If parking every month at MD Anderson is all you have to deal with

then so be it.)

 

I am afraid of the TKI's as well. The Gleevec has destroyed my

thyroid and now I am so allergic to it, I have to take anit-histamines

to stop the itching.  I'm sure my onc. will switch me to Sprycel

and that has me so anxious I can't sleep.

If only I was in your shoes. 

 

Take care. Thanks for keeping us informed.

Simone

 

HI Simone - Thanks for the encouragement.

I take Quercetin from time to time as a natural anti-histamine. It works for me - kills the itch.

 

I don't recall your PCR level - if you are at MMR or below, and decide to switch to Sprycel, consider starting a low dose and work up if needed. Sprycel is a potent drug that can work remarkably well at lower doses. It worked for me at 20mg and I no where close to MMR when I started that regimen.

[tiredblood]

Scuba Stated, "I won't say my approach is easy on the mind - it was for me because I fear the TKI more than the disease."

 

I also fear the TKI, leaving me to wonder how long any compensatory mechanisms that may be in effect will hold out. Other than the CML, I have had excellent health.  After the TKI, quality of life has certainly intermittently declined.  On the other hand, I respect the seriousness of having CML and the need to control it. I've pondered that the time may come where I will weigh the side effects/quality of life against the life-saving desired effect of the TKI, but the thought that a cure could be just around the corner would make me hold out.  My prayer is that researchers will continue to *strive for a cure* and not just settle on the fact that TKIs offer good results in controlling CML, especially in an age where doctors seem to just work to maintain patient's conditions rather than prevention or cure.

 

I'm really thankful that there seem to be some researchers/doctors that not only refer back to controlled clinical trials, but are in tune with what is actually going on with their individual patients.  

 

I admire your bravery, Scuba, and appreciate your sharing your experience with us.  I figure if I have to have CML, I want it to count for something and want my own experience to help someone else.

[mikefromillinois]

Congrats Scuba.  Stay the course!

 

I am in month four of the LAST cessation trial and so far have remained undetectable.  Needless to say I'm stoked.  Forgive the minor thread hijack Scuba but I'm going to say a few words about stopping tki's. 

 

Without "clinical trials" medicine would not advance much - some here will remind us that we have tki's as a result of clinical trials.

 

In the LAST trial I go in monthly for bloodwork - AND - I participate in intense interviews for at least one hour each visit.  In the beginning of the trial I was asked to take copius notes between visits about side effects and so on, and I do so.  The doctors running this trial are trying to find out as much as they can about the disease.  (On my last visit I was asked if I noticed any change in the way my body reacts to mosquito bites since I have been off the meds - we are talking attention to detail here.) 

 

To what ends?  So that "medicine" can better understand the disease.  So that they can learn how to best treat the disease.  So they can better understand how the medicine works - why it works on some and not others - why some people can successfully quit and others can't.  Understanding and managing side effects better.  Helping patients fully understand their treatment options.  Maybe even learning what causes the disease.

 

For me, participating in this trial feels like being on a "team" of clinical people working with them on a project - not at all like a patient visiting the clinic.  Based upon the energy with which the people running this trial are seeking out information, I have NO DOUBT that ALL OF US here will benefit from the research being done.

 

I have seen some statements here that to me suggested that some folks here have an issue with some of us "gloating" about our cessation or the fact that our treatment is going well, perhaps because their own treatment isn't going so well.  I think that is very unfortunate.  I myself am well aware that just because my treatment is going well today does not guarantee that next year I will still be doing well.  I come here to learn and I want to learn about everyone's course of treatment.  I personally WANT those doing well to keep coming here and to keep telling us their stories and offering support and advice.

 

Those who are critical of the postings of those doing well should consider this: If people simply left or quit posting once their treatment was going well...all of the posts here would be "negative" in a sense...and all of the newly diagnosed patients (like we ALL were once) would come here and quickly decide that they should look forward to a future of doom and gloom.  In my own case, immediately after my diagnosis I came here and I was VERY relieved to hear so many people here telling how well their treatmen was going - made the disease much less scary for me.

 

We are all in this together gang - as they say at the altar...in sickness and in health.

 

Finally, as Scuba stated, no one should ever stop or modify their medication without first talking to their doctor.

 

Here's wishing everyone continued good health and many happy days...

 

Mike

[tiredblood]

Mike, I appreciate what you said in your post above.  Before I got CML and started posting here, I always thought of those who participated in clinical trials did so as a last resort in attempts to cling to life.  I know this is often the case, and I would certainly be one of those persons given the right situation.  What I learned here at the LLS discussion board was that my previous way of viewing participation in clinical trials was very limited and I've have had to change my way of thinking.  I have developed a huge respect for those who participate in clinical trials regardless of the reason for participation,  I better understand now that the reasons for participation vary more than I ever understood before.

 

Hats off to clinical trial participants.

 

Since you mentioned mosquitoes- As an aside, I remember the first time a mosquito bit me after starting the TKI,   I thought, "Are you sure you want to do that?"  Then, I wondered what effects it may have on that mosquito. FWIW, when I get bitten, it is flat now with no wheal development.

[Buzzm1]

Congratulations Scuba!  Happy that you have maintained MMR and that your oncologist is having you continue status-quo, TKI-free.  CML is a learning experience for all of us.  Thanks for the update.

 

Buzz

[hannibellemo]

Don't be silly, Scuba, this forum is for everyone's experiences. While I personally feel I may never be able to stop my TKI, I'm happy for everyone who has the courage to try whether successful or not. 

 

You may be a little over-enthusiastic in telling some long-timers on here that they are probably cured, but I think, on the whole, everyone takes it with good humor and in the spirit in which it is intended! 

 

We're all here for each other on this site and that is what's important after all.

[SUE]

Scuba,

 

Please do not stop posting your results and the thoughts about them that both you and your oncologist have.  Clearly the treatment for CML is not "one size fits all," just as the effects that the TKI's have on us vary quite a bit.  Unfortunately, many oncologists are not aware of the variations and still insist on prescribing full strength all the time.  Only by hearing the experiences of you and others can we gain the knowledge that allows us to participate as a partner in our treatment.

 

Sue

[Terran]

This forum needs a like button. I just want to to say thumbs up.

[Terran]

This forum needs a like button. I just want to to say thumbs up.

[Kellyb333]

Scuba,
I don't post much, but I am also dealing with myelosuppression and see Dr Cortes. I am very encouraged by your posts.

[janne]

Please continue to post, Scuba. ALL clinical results posted on this board are of value, not to mention that we need "pioneers" in the field. I also encourage anyone in the LAST trial or private cessation trials to keep posting as well. Thank you for all your contributions.

[kat73]

Oh, Scuba, don't stop posting - your journey is fascinating, and the fact that your doctor is Dr. Cortes is very significant for us. I agree with the other posters that we all gain from everybody's experiences. 

 

I do want to put in a word here for the ones having really serious troubles - I don't believe anybody from that cohort criticized the rest for "gloating" - I think they just wanted to let people know how it felt to be in their shoes, and I'm very glad they did.  Nobody wants to hurt anyone, even if inadvertantly.  And all of us need each other's info and support.  I do remember that the only place where I got enough information to really cheer me up was right here at this forum, and a great part of that was peoples' success stories.  Just remember how hard it is to feel inspired by others' success - even though your rational side says be happy for them - when that door seems truly closed and you're maybe on your 4th TKI and physically suffering.  OK, enough preaching!

[rct]

Oh, Scuba, don't stop posting - your journey is fascinating, and the fact that your doctor is Dr. Cortes is very significant for us. I agree with the other posters that we all gain from everybody's experiences. 

 

I do want to put in a word here for the ones having really serious troubles - I don't believe anybody from that cohort criticized the rest for "gloating" - I think they just wanted to let people know how it felt to be in their shoes, and I'm very glad they did.  Nobody wants to hurt anyone, even if inadvertantly.  And all of us need each other's info and support.  I do remember that the only place where I got enough information to really cheer me up was right here at this forum, and a great part of that was peoples' success stories.  Just remember how hard it is to feel inspired by others' success - even though your rational side says be happy for them - when that door seems truly closed and you're maybe on your 4th TKI and physically suffering.  OK, enough preaching!

 

Yeah, I was pretty surprised to see a couple folks take it as they being "gloating".  Some pretty basic reading of it shows more than a couple people explaining why it is some people don't really come here, which was part of the another CML forum thing.  I don't understand how people get all that out of the facts, but there it is.

 

Keep up the good stuff Michael.

 

rct

[pammartin]

You should keep posting.  Your journey is your own and you have noted several times it is a journey made with your oncologist's knowledge and support.  Not everyone is going to be able to stop these TKI's, at least for now, and there are many who struggle with the TKI's side effects.  Your entire journey gives people hope for the future from dropping to low dose options or one day be treatment free.

 

What ever happens in the future we all want to know what is going on and how you are doing.  Congrats on the decision to continue to stay off the TKI.  We walk this journey one day at a time and every day without a TKI is blessing.

 

Pam

[Lisa Lisa]

Congratulations Scuba! I enjoy reading your posts, and have gotten so much positive energy from them. Your story, like you, is unique.  Never stop being yourself, and continue to post.  Those who don't like it can just choose not to read it.  Write on!!

All the best to you.  

Lisa

[Pin]

Scuba, thank you for posting updates about your experience through this - it gives me so much, from information from such a knowledgeable and prominent specialist in the CML field (which I simply would not have access to otherwise), to inspiration and hope for our shared future with this disease.

 

I understand how difficult reading about other's positive journeys can be when you are struggling, and we have all endured this at one point or another, and for some of us it is a constant battle all the way through. All of our journeys are important, we are all together in this.

 

Pin xx.

[Gail's]

I appreciate the posts from you Scuba. Encouraging to see there may be some light at the end of the TKI side effect tunnel. And to mike, thank you for participating in the trial and I'm hoping you'll succeed.