21 replies to this topic

[scuba]

I decided to resume taking 20mg Sprycel (at my wife's urging) even though I am below MMR during my cessation trial and was authorized and encouraged to continue.

 

My reason had to do with a somewhat sudden infection that I developed a few weeks ago that grew into a chronic cough and neck soreness. This is the first time I have had any illness whatsoever since diagnosis and reminiscent of my first ever pneumonia that I am confident was CML related (weakening immune system). My thinking is that my neutrophils are not of good quality as before. Even though my PCR's are holding steady, I can't help but feel that CML is reasserting itself albeit very very slowly.  I needed to see my PCR fall back after the initial rise and loss of PCRU. And they didn't. 

 

So - I decided to start Sprycel again out of curiosity and test that my PCR does in fact fall back (even to PCRU). I will resume cessation if my PCR drops back and will try this on again off again strategy. 

 

Trey wins the bet. I didn't go a year without Sprycel. Nine months wasn't bad. I just want to see and confirm that TKI resumption reverts me back to PCRU. If it does, I will try cessation again. ... and again ... and again ... I won't give up this effort. Something tells me it can work once the leukemic stem cells burn themselves out which is a theory to which I subscribe. And even though my immune system may be keeping CML in check - it's not without a weakened immune system. 

 

Thanks to the Forum for all of your support. 

 

p.s. The first time I resumed taking sprycel (about a week ago) - big headaches. I hate these drugs. But the headaches faded within a couple of days. No other side effects I can feel. That's good news on such a low dose. 

[tiredblood]

I got "big" headaches too for several days after stopping Tasigna 18 days ago. My rash and constipation are now gone, but the joint aches and pains and dry eyes/skin/hair remain.

 

I wish you well with your CML journey, Scuba.

[Melanie]

Scuba, I think your wife is a wise woman and I commend you for listening to her. Your logic is..well, logical. I know this isn't what you wanted, but it's always best to be safe, especially when pushing the limits.

I'm very interested in your "pulsing" on again off again strategy. Please keep us posted and happy to hear your side effects starting back up are minimal.

[Buzzm1]

Scuba, sorry to hear about your chronic cough and neck soreness.  It's always better to be on the safe side.   Nine months without a TKI is to be celebrated, and the fact that you never lost MMR during that nine-month period is encouraging to those of us who envision attempting cessation in the future.  I'll be looking forward to hearing of your continued success.

 

Buzz

[Gail's]

Good for you Scuba to make it 9 months. I've noticed Trey seems to be softening a bit toward trial of cessation so I don't think he'll gloat. You've given me inspiration to stay the course, supplement and wait for pcru with the possibility of cessation. Even a month off these dreadful drugs would feel good, so I'm really glad you got a whole 9 months!

[Kali]

You had 9 months of success with your plan! That is wonderful! To be cautious is also a great decision! It sounds like a win win to me. I wish you good things and the very best!

[scuba]

Thanks - I'm not so much stopping cessation (permanently) as deciding to take the time now and "test" that resuming Sprycel (albeit very low dose) for one month while I have a detectable PCR will, in fact, drop my PCR level back down by an order of magnitude to where it was before I started (PCRU or barely detectable). I want to see if one month of Sprycel (20mg) is enough. Assuming it is, I will resume my cessation test and see if I can go another nine months or more before it builds back up. Nine months off, one month on ... that's o.k. with me. Hopefully there will come a time when there is no increase and mission accomplished. Getting bronchitis (feels like it anyway) was the trigger since I have not been sick whatsoever once my PCR fell below MMR the first time years ago. So I thought maybe my neutrophils are not as high quality to fight infection with CML around.

 

My personal experiment just gives me continued confidence that CML is indeed a very slow disease when in chronic phase and we have time to try things with little risk. I do feel that my Curcumin regimen has helped me keep CML very slow or even stall it in the absence of a TKI. The good news will be to see that resuming a very low dose of Sprycel (20mg) is sufficient to press back to PCRU or very close and i can go back off again.

[Trey]

I would suggest having a BMB now to make sure the Trisomy 8 is no longer present.  I doubt the CML had anything to do with the recent illnesses.

[Kali]

That sounds very encouraging! I know you will navigate this well! Won't that be awesome if the 20 mgm does the job and your doctor agrees to try again! All good!

[scuba]

I would suggest having a BMB now to make sure the Trisomy 8 is no longer present.  I doubt the CML had anything to do with the recent illnesses.

 I agree with you that the CML probably had nothing to do with the recent illness, it just felt like it did and pushed me over the edge to test resuming and seeing if my PCR drops back (which I fully expect it will).

 

I have a BMB scheduled in December. My next PCR is in November (two weeks). assuming my PCR drops one log back down (or "undetected"), I will stop Sprycel again which will give me 30 days prior to BMB.

[scuba]

That sounds very encouraging! I know you will navigate this well! Won't that be awesome if the 20 mgm does the job and your doctor agrees to try again! All good!

 

The 20mg did the job before. I fully expect it will do it again. My doctor is very encouraging to try all of the above (stop, pulse, resume). He feels that once a patient achieves cytogenetic remission - especially quickly (no CML under the microscope), they have excellent prognosis. He has had zero patients in this category progress after stopping and then resuming.

 

The risk to me is low (in my mind - zero). So I am happy to report here what i am doing and the results. I could have kept going (cessation) since my PCR remained unchanged month over month - but my curiosity was too great.

[Kali]

Thank you for sharing that perspective. It gives me hope as well for myself and for others dealing with this surprise diagnosis and new path in life. My onc is very encouraging of all the things they are learning about CML. He even said if we had more sensitive tests for pcr we may find that the cml is actually gone in some patients due to the TKI drugs. He believes they will come out with a more sensitive test in the future to know for sure. He also shares about the cessation trials and some of the success. Anything to provide hope! You are giving us hope too! Thank you!

[soundoff]

Better to be safe than sorry.
What does your ANC look like?

[Buzzm1]

 I agree with you that the CML probably had nothing to do with the recent illness, it just felt like it did and pushed me over the edge to test resuming and seeing if my PCR drops back (which I fully expect it will).

 

I have a BMB scheduled in December. My next PCR is in November (two weeks). assuming my PCR drops one log back down (or "undetected"), I will stop Sprycel again which will give me 30 days prior to BMB.

Scuba, glad that you are willing to go through all these tests so that perhaps we won't have to.

 

In yesterday's email from my Onc, telling me that I remained PCRU, she stated unequivocally that she does not recommend that I reduce my Gleevec dosage any further (from the 200mg that she reluctantly agreed to in July. )  I'll be lobbying hard in January as I plan on reducing my Gleevec dosage down to 100mg, on my journey towards cessation.  Wishing that I can switch over to 20mg Sprycel for the Jan.- July period preceding cessation, but that remains to be seen ... I'm on Medicare and Gleevec, only, is in the Medicare Formulary.  Of course, if I lose PCRU any time in the next three months, it's all for naught. 

 

Scuba, hope you don't mind that I took the liberty of creating a condensed Table of your progress for my own benefit and maybe others: (let me know of any corrections, or additions)

 

Scuba's Progress

late Oct., 2015 resumed 20mg Sprycel

Oct., 2015 0.06% IS scale

Sept, 2015 0.05%

Aug., 2015 0.05%

July, 2015 0.02%

June, 2015 0.1% possible error

Feb., 2015 <0.01% stopped Sprycel 20mg

June, 2014 <0.01%

mid-2011 started Sprycel 20mg

May, 2011 PCR 155% myelo suppression problem

diagnosed 2010

[missjoy]

Hi Scuba

Thanks for posting! Sorry to hear you were not feeling well. Hope you are fully recovered now. I also hope you will reach Undetectable again soon.

Best

[pammartin]

We will never know unless we keep trying.  Thanks for sharing your continued journey.  Feel better soon.

[CallMeLucky]

It's a high stakes chess game. You made a good move for now. Play for the long game and see how it goes.
Good luck and keep up the good fight.

[acl]

I decided to resume taking 20mg Sprycel (at my wife's urging) even though I am below MMR during my cessation trial and was authorized and encouraged to continue.

 

My reason had to do with a somewhat sudden infection that I developed a few weeks ago that grew into a chronic cough and neck soreness. This is the first time I have had any illness whatsoever since diagnosis and reminiscent of my first ever pneumonia that I am confident was CML related (weakening immune system). My thinking is that my neutrophils are not of good quality as before. Even though my PCR's are holding steady, I can't help but feel that CML is reasserting itself albeit very very slowly.  I needed to see my PCR fall back after the initial rise and loss of PCRU. And they didn't. 

 

So - I decided to start Sprycel again out of curiosity and test that my PCR does in fact fall back (even to PCRU). I will resume cessation if my PCR drops back and will try this on again off again strategy. 

 

Trey wins the bet. I didn't go a year without Sprycel. Nine months wasn't bad. I just want to see and confirm that TKI resumption reverts me back to PCRU. If it does, I will try cessation again. ... and again ... and again ... I won't give up this effort. Something tells me it can work once the leukemic stem cells burn themselves out which is a theory to which I subscribe. And even though my immune system may be keeping CML in check - it's not without a weakened immune system. 

 

Thanks to the Forum for all of your support. 

 

p.s. The first time I resumed taking sprycel (about a week ago) - big headaches. I hate these drugs. But the headaches faded within a couple of days. No other side effects I can feel. That's good news on such a low dose. 

Hi Scuba, Thank you for sharing your journey! Feel better soon!

[Lisa Lisa]

Scuba,

I sympathize with the headaches, and hope you get through them soon.  As for the PCRU - Nine months is a success many of us look forward to. Thank you for keeping us updated on your journey, I always look forward to your posts.

[scuba]

Scuba,

I sympathize with the headaches, and hope you get through them soon.  As for the PCRU - Nine months is a success many of us look forward to. Thank you for keeping us updated on your journey, I always look forward to your posts.

 

The headache was mild and lasted a couple of days. I presume it was my body re-adjusting to sprycel again albeit low dose. I fully intend to stop again next month. I am just curious to see if resuming Sprycel (at 20mg dose) will drop my low residual PCR back below detection or if it will take several months to go back down as it took to go back up. I do note that on 20mg. Sprycel I do not feel any different (no side effects I can sense). Having been on Sprycel (and initially Gleevec) and then off completely - I have a good feel for what are side effects and what are not. Also - going through this trial and seeing the data gives me additional confidence in my overall approach to managing CML.