Hi everyone. It's been a long time since I have posted. I look at posts every now and again, usually when something crops up or considering a change. I was diagnosed in 2004 at age 36. Started on Gleevec 600. Was PCRU within 14 months. Lots of side effects. Had to go on disability. Eventually went down to 400mg. Still had lots of side effects but lived with it. About 8 or 9 months ago after much deliberation, decided to switch to sprycel. My joint pain was so bad, muscle cramps that made me fall to the floor and end up in the ER, chronic diarrhea, etc... Etc. switched to Sprycel 70mg at first. Remember having horrible side effects but can't tell you what they were cause my memory is now shot. MD dropped me to 20mg. Side effects better. But joint pain remains unbearable at times. Was having some dizziness muscle spams in my lip. Had a MRI of my head. Onc called to tell me the MRI came back clean but that my CML is back. Still kind of in denial about it. Onc told me not to freak out about it. No med changes, retest in 3 months. I agonized long and hard about making the change. Read years of posts about people who did and most seemed to to well. Also read about studies being run for folks who have been PCRU for years possibly coming off TKI's for good. So thought it would be ok to give sprycel I shot. Well it apparently isn't working for me. Just wanted to post this info for others who are thinking of making the change. Definitely not cured. :•( thanks for listening. ~Jen
Lost 8-1/2 yr PCRU after switching to Sprycel
Posted 16 March 2014 - 09:32 PM
From what I have seen, those who lose PCRU can do so for several reasons beyond the normal issues. One is taking other drugs which interfere with Sprycel absorption, such as PPI drugs (Prilosec, etc), or other drugs which might interfere with absorption. Other issues may be insufficient dosage. 20mg is fine for some, but not nearly enough for others.
Some people actually do better on Gleevec than Sprycel. It is a myth that Sprycel is always better for every person.
It would be useful if you discussed other drugs you are taking, Also any other possible contributing issues.
Posted 16 March 2014 - 10:07 PM
I hope you get feeling better soon. I'm particularly saddened by this story, I would expect someone who has been PCRU for that long is cured...
That's just my optimistic side I guess.
Posted 16 March 2014 - 11:47 PM
That's the main problem with PCRU test results, you can't tell whether it is the TKI keeping it at bay, or that you are cured. Ive been off Gleevec for three months now, my doc still keeps my feet on the ground about the results.
Posted 17 March 2014 - 01:30 AM
I think your body is trying to adjust with new medication . As long as you are not loosing your MMR , it is fine. There are five TKI around, one will surely do the trick.
Posted 17 March 2014 - 01:33 AM
Good to know that you are off imatinib. When did you get DX? How many years in PCRU ?
Kindly share us the story of your journey
Posted 17 March 2014 - 06:29 AM
Sorry-What were your recent bcr/abl results? Regards, Frank
Posted 19 March 2014 - 04:26 PM
Thank you everyone for your responses. I kind of buried my head in the sand for a few days. Then realized I didn't get enough information from my doc nor did I like his recommendation for handling it. If I'm making leukemia cells again after 8-1/2 years. I'm not going to do nothing for 3 months and let them keep producing. I did not ask the numbers for the bcr/abl. I didn't even think to, it's been undetectable for so long. I have a call into him to get the numbers and come up with a better plan then just waiting.
I also have diabetes, htn, fibromyalgia. My meds are sprycel 20mg, novalog insulin, victoza, cymbalta, metformin, multi vit, rx vit D, vit b 12, lisinopril/hctz.
I was just so shocked after hearing about folks coming off meds who were undetectable for so many years to have mine come when there was just a change in meds.
I'm trying not to dwell on it to much. I think I'm hoping we will try to up the sprycel to 40 without too many side effects. Thoughts of going back on Gleevec causes me an anxiety attack.
God Bless Everyone
Posted 19 March 2014 - 06:01 PM
It may be that the BCR level was very low. The doc might be trying to see if it is a trend or a bounce.
Posted 19 March 2014 - 09:31 PM
Hi Jenny - 20mg. may be too low, but you said the main reason for lowering the dose was joint pain and muscle spasms. Dr. Cortes (M.D. Anderson) suggested 400mg Magnesium Citrate daily. I had some muscle spasms when started Sprycel and again when I increased my dose from 20mg. to 40 mg. Sprycel. After starting 400mg. Mg. Citrate - they disappeared. I haven't had a muscle spasm of any kind since. Perhaps you should consider it.
Also -what is your PCR level? You could very well be low residual such that 20mg. Sprycel is sufficient.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 19 March 2014 - 09:52 PM
I was pcru over a year on Gleevec switched to Sprycel , lowered dose and lost it. Still MMR though but trending up a little more with each test I am now up to 100mg of Sprycel again and waiting to see what next PCR will show. May consider going back to Gleevec if no pcru but the side effects are a lot better on Sprycel so it will suck to go back.
Posted 20 March 2014 - 08:29 AM
Those are some significant medications you are taking which could possibly interfere with Sprycel more than Gleevec, but no one really knows much about these issues. Any interference with absorption could overcome the small dosage you are taking. You could try taking the Sprycel with at least 2 hours separation from any other medication. Also, a higher dosage of Sprycel might work, but if not you might want to try Tasigna since the Gleevec side effects were difficult for you.
Posted 22 March 2014 - 07:31 AM
I was going through your old posts. You did achieve MMR very fast and PCRU soon after . Why did you change over to 2TKI ?
Posted 23 March 2014 - 11:58 PM
Hi everyone. Thank you for your comments, thoughts, and suggestions. I switched off Gleevec due to worsening joint pain, increased muscle cramps, fatigue, etc. After 8-1/2 years on Gleevec, theses side effects were getting worse. Unfortunately the joint pain continues to be an issue. Which could be just the classification of drugs- TKI's. Could be the the drugs in combination with my other health issues - fibromyalgia. Chose to switch to sprycel rather than the other option (tasting ) due to diabetes and the window 2 times of day where you are not supposed to eat 1 hr before and 2 hrs after ( or vice versa I can't remember- ain't that a surprise?) I am on insulin 2 times a day and thought managing the diabetes with that window would be just too much to remember or deal with.
I take my sprycel at night before I go to bed. At that time I take my cymbalta and low dose aspirin. The doc didn't return my call this week which is unusual. I haven't called again cause my head is still kind of buried in the sand (aka-denial).
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