38 replies to this topic

[Red Cross Kirk]

Trey - Echoing Gerry, what dose Sprycel are you taking?

 

You really switched so you can live longer - eh?

http://www.kurzweila...rch-mayo-clinic

Scuba,

 

Thanks for the link to that info about dasatinib! Very interesting.

[Trey]

I only tested at 6 months and then 10 months.  Had a .008% after 6 months then .07% at 10 months. 

 

I was kidding about the thread jumping.  Rissa doesn't mind. 

 

I just did not want to discourage others since cessation would have been expected to work for me.  I was not totally surprised, but was not thrilled, either.  I always said I would do something different after 10 years, so here I am.  Sprycel is different.  Losing the cramps is a good thing.

 

As to when cessation works for CML patients I do not see any clear pattern.  I was a very fast responder to Gleevec.  MMR in 100 days, and PCRU in under 8 months.  Length of PCRU was very long, over 10 years.  Very healthy otherwise, exercise often, no seriously bad habits.  None of what the "experts" say about cessation success probability seems to be accurate from what I have seen in others and now for me.  It comes down to trial and error.  Where have we heard that before?  Just everything about CML.

[thatguy]

I only tested at 6 months and then 10 months. Had a .008% after 6 months then .07% at 10 months.

I was kidding about the thread jumping. Rissa doesn't mind.

I just did not want to discourage others since cessation would have been expected to work for me. I was not totally surprised, but was not thrilled, either. I always said I would do something different after 10 years, so here I am. Sprycel is different. Losing the cramps is a good thing.

As to when cessation works for CML patients I do not see any clear pattern. I was a very fast responder to Gleevec. MMR in 100 days, and PCRU in under 8 months. Length of PCRU was very long, over 10 years. Very healthy otherwise, exercise often, no seriously bad habits. None of what the "experts" say about cessation success probability seems to be accurate from what I have seen in others and now for me. It comes down to trial and error. Where have we heard that before? Just everything about CML.

So are you testing at 3 mo now, or more frequently?

[Melanie]

Trey, what an interesting experience. Another "unique" CML adventure. I would have bet good money on you being successful at cessation! I'm so sorry it didn't work for you, but if the experiment was able to relieve your cramps, then something was definitely gained. Hope you will share if the 20 mg of Sprycel keeps moving your PCR down and if you experience any side effects from it.

[Melanie]

Trey, what an interesting experience. Another "unique" CML adventure. I would have bet good money on you being successful at cessation! I'm so sorry it didn't work for you, but if the experiment was able to relieve your cramps, then something was definitely gained. Hope you will share if the 20 mg of Sprycel keeps moving your PCR down and if you experience any side effects from it.

[Pin]

Rissa, I'm sorry you have this cramping and inflammation. I have cramps frequently, in all sorts of muscles I didn't know existed, usually when I hold a muscle in an odd position for more than a second, which of course happens all the time:(

I also have a lot of inflammation, I'm about to get an ultrasound on my knee bursitis, I have it on both sides, my haemotologist wants to make sure that's what it is.

Please let us know who you go with any further tests. Us women are unfortunately more susceptible to autoimmune conditions too, so I can see why they are checking you for those.

[Pin]

Trey, thank you for sharing your story with us. I feel somewhat guilty and helpless that we couldn't support you with your cessation experience, as you are so kind and generous with your time for all of us.

Your story adds to the complex crapshoot that is cessation!

[Kali]

Trey,
I am saddened to hear about your cessation journey. I thought if anyone could possibly do cessation it could potentially be you. Your many years of PCRU is so encouraging. Your story about cessation and the increase in your numbers in just 6 months is flabbergasting and disheartening. Thank you so much for sharing as it gives an additional perspective for this CML journey. I wish you and everyone on this discussion board the best and good things to come.

[AdamJ]

Trey,  I appreciate you sharing this story with us.  I terribly sorry to hear that your attempt at cessation was unsuccessful.  As a newcomer and a fellow quick responder, I have been very optimistic about my chances for TFR in the future. Based on your experience, rather than focusing much energy on cessation, I am going to actively work toward dose reduction (despite reluctant doctors).  I suspect that I will be better off on a low dose than stopping and restarting after two years of PCRU.

[missjoy]

Trey,  I appreciate you sharing this story with us.  I terribly sorry to hear that your attempt at cessation was unsuccessful.  As a newcomer and a fellow quick responder, I have been very optimistic about my chances for TFR in the future. Based on your experience, rather than focusing much energy on cessation, I am going to actively work toward dose reduction (despite reluctant doctors).  I suspect that I will be better off on a low dose than stopping and restarting after two years of PCRU.

I quoted this as it is exactly as I feel.

Is it true that patients who are younger than 45 have a smaller chance than older patients to be successful in cessation? I recall reading something like that. I don't know but imagine you are a fairly young guy.

I am thankful for all the support you have provided us.
Wish you the best!

[hannibellemo]

AdamJ,

 

I appreciate your change in focus! I get the feeling, especially in the last few years, that everyone and their doctor, feel that PCRU is the "gold standard" for CML. I didn't believe then, and I don't believe now that this is the case. At one time, 10% was mentioned as the number of us who would go on to become undetectable. I think with the addition of the more powerful TKIs that this number has probably increased - anyone know if this is true and what the current thinking is?

 

The question is, does maintained PCRU offer better outcomes than maintained CCyR or MMR, and at this time there doesn't appear to be any concrete evidence that it does. Correct me, anyone, if I am wrong.

 

So, for me, I intend to keep taking Sprycel (50 mg for now) everyday and allow my response to be what it is going to be, because I don't think I have much more control over it, than that. Cessation is not something I even think about.

 

Good luck!

[gerry]

Hi Trey,
I had wondered if you had a go at cessation as you had reached the 10 year mark. I hoped that when you did that you would have been able to remain off and then I could have teased you about the mythical 10 year mark and that you could have stopped sooner. But annoyingly that wasn't meant to be. :-(
Even for those of us who manage to remain off a TKI, I still think the CML is waiting around in the background looking for an opportunity to rise up again.
Just wish they could develop a drug or some sort of nanno technology that only took out the CML and didn't bring on other issues.
On the plus side for you (if there is one) the change in drugs has removed the muscle cramps so you can wander round your golf course as much as you like. And you are able to start and continue on a low dosage of Sprycel. Perhaps in two years you might consider trying to come off again, as Sprycel has a higher level of successful cessations.

[beno]

I've recently noticed something unusual that I'm not sure if it is a side effect or not.  I almost exclusively sweat from the shoulders up now.  I've begun exercising more intensely to see if that helps my fatigue.  I played racquetball the other day and worked up a good sweat, except I noticed my socks were completely dry, which seemed odd.  So the next time I went to the gym, I was on the elliptical and rowing machine until my head was drenched, but I had no sweat in my arms, torso, or legs.  I thought it was weird so sat in the 195 degree sauna for 15 minutes and my head started sweating in seconds, but I had barely any perspiration anywhere else on my body.  I asked my family doctor and he is looking into it.  I was just curious if that happened to anyone else.

[Rissa]

Update - I forgot to mention that I switched to generic the middle of December, but I don't believe the generic is causing this.  I went to see a rheumatologist yesterday and he told me to drink tonic water and go see a physical therapist.  From what I've read, you have to drink an awful lot of tonic water to get any benefit from the quinine in it, so that's kind of pointless.  I also don't think a physical therapist is going to be of much use to me.  I've had these bouts of pain/cramping over the years, but never like this.  Maybe that's what I've been going through plus the switch to generic may have made things worse.  I just don't know.  So I guess I'll just give it a little more time and if my situation does not improve, then I'll talk to my doctor about switching to Sprycel. 

[mikefromillinois]

I've recently noticed something unusual that I'm not sure if it is a side effect or not.  I almost exclusively sweat from the shoulders up now.  I've begun exercising more intensely to see if that helps my fatigue.  I played racquetball the other day and worked up a good sweat, except I noticed my socks were completely dry, which seemed odd.  So the next time I went to the gym, I was on the elliptical and rowing machine until my head was drenched, but I had no sweat in my arms, torso, or legs.  I thought it was weird so sat in the 195 degree sauna for 15 minutes and my head started sweating in seconds, but I had barely any perspiration anywhere else on my body.  I asked my family doctor and he is looking into it.  I was just curious if that happened to anyone else.

 Beno,

 

My entire life I was always a "heavy sweater".  Once I started taking Sprycel I literally stopped sweating altogether.  The entire time on Sprycel I never sweat - seriously.  I stopped taking Sprycel about 20 months ago and since then I resumed sweating heavily again just as was normal my whole life before Sprycel.  This is great news to me as I always believed that sweating was healthy and it 'cleaned pores from the inside', so to speak.

 

Mike

[gerry]

Rissa,
Have you been checked for MS? If only to know it isn't that.
Just thinking if you can eliminate what it isn't, and it comes down to the gleevec it might make it easier to switch TKIs.

[Trey]

..... I switched to generic the middle of December, but I don't believe the generic is causing this.  .... Maybe that's what I've been going through plus the switch to generic may have made things worse.....

 

Rissa,

You also might want to follow the research on generic imatinib through the GIST support group since they take imatinib for GIST tumors:

 

https://liferaftgrou...able-in-the-us/

[Rissa]

Trey, Thanks for the link.  And you're right, I don't mind hijacking.    Lots of good information here.  I too am surprised at your switch to sprycel.  I'm sure, at some point, I'll have to make the switch too.  My bcr/abl has always been a roller coaster, but never alarming.  I hope you're feeling and functioning better now.

 

Gerry, No doctor I've seen has mentioned MS as a possibility.  For now I think I'll stay the course with my generic and just see what happens.  When I first started gleevec, it took about 4 months for my side effects to calm down and become manageable.  Maybe that's the case with the generic.  Switching to sprycel though sounds better and better all the time.

[gerry]

Hi Rissa,
I've since seen another member talk about an increase in cramping since starting a generic. Interesting to know if the generics are direct copies of the Gleevec or if some of them have had some tweaking. The balance issues combined with the cramping, plus being female led to maybe looking at MS for me. I went through the tests a couple of years ago for it, but my tests were in relation to the evidence of strokes in my brain.