Trey - Echoing Gerry, what dose Sprycel are you taking?
You really switched so you can live longer - eh?
Scuba,
Thanks for the link to that info about dasatinib! Very interesting.
Posted 30 January 2017 - 11:16 AM
Trey - Echoing Gerry, what dose Sprycel are you taking?
You really switched so you can live longer - eh?
Scuba,
Thanks for the link to that info about dasatinib! Very interesting.
Kirk
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
Posted 30 January 2017 - 11:22 AM
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.
Posted 30 January 2017 - 12:24 PM
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.
Posted 30 January 2017 - 11:59 PM
Posted 30 January 2017 - 11:59 PM
Posted 31 January 2017 - 06:25 AM
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 31 January 2017 - 06:30 AM
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 01 February 2017 - 12:35 PM
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
Posted 01 February 2017 - 05:26 PM
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.
3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU
Posted 02 February 2017 - 08:51 AM
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.
Posted 02 February 2017 - 09:37 AM
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!
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 02 February 2017 - 05:17 PM
Posted 03 February 2017 - 12:52 PM
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.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
Posted 03 February 2017 - 12:55 PM
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.
Posted 03 February 2017 - 03:21 PM
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
Posted 03 February 2017 - 03:41 PM
Posted 04 February 2017 - 09:59 AM
..... 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/
Posted 07 February 2017 - 09:00 AM
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.
Posted 07 February 2017 - 05:03 PM
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.
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