Diagnosed with CML 14 years ago (May 2001). Took Gleevec for 7 years, moved to Tasigna for 3 years, then to Sprycel for 10 weeks until allergic reaction and now back on Tasigna for the past 4 years. Earlier this year (March 2015) during cardiology visit discovered I now have tachycardia and 2 weeks ago (October 2015) was diagnosed with a brain tumor - meningioma. Anyone else have these issues or know of this happening to CML patients?
7 replies to this topic
#2
Gail's
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Posted 18 October 2015 - 02:43 PM
I haven't had these issues but I'm sorry this is happening to you. How will they treat your brain tumor?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#3
Frogiegirl
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Posted 18 October 2015 - 03:02 PM
Hi can I ask why the change from tasigna to sprycel and then back to tasigna? Sorry about your situation 
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#4
SallyEscar
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Posted 18 October 2015 - 04:09 PM
My oncologist thought sprycel would be better for me with less restrictions for taking the medication and some of the side effects I was experiencing. After 10 weeks I woke up one night with itching hands and feet, my throat started closing and then anaphylactic shock, so I'm back on Tasigna.
#5
acl
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Posted 18 October 2015 - 06:51 PM
Diagnosed with CML 14 years ago (May 2001). Took Gleevec for 7 years, moved to Tasigna for 3 years, then to Sprycel for 10 weeks until allergic reaction and now back on Tasigna for the past 4 years. Earlier this year (March 2015) during cardiology visit discovered I now have tachycardia and 2 weeks ago (October 2015) was diagnosed with a brain tumor - meningioma. Anyone else have these issues or know of this happening to CML patients?
Hi SallyEscar, Sorry about your diagnosis of brain tumor. Can I ask why the change from Gleevec to Tasigna?
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
#6
SallyEscar
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Posted 19 October 2015 - 02:17 PM
Thank you for the comments and good wishes. I was taking 800 mg gleevec per day and began failing, so was moved to tasigna. As to the treatment for the brain tumor, doctors believe it is benign and slow growing, so not sure what the course of action will be. Waiting to hear what the next step will be.
#7
kat73
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Posted 20 October 2015 - 10:32 AM
Hi, SallyEscar - I am SO sorry to hear about your new scare. It disturbs any hard-won tranquility you might get from being a 14-year CMLer, doesn't it! I hopehopehope that it is truly benign and gives you no trouble going forward. the tachycardia is no picnic, that's for sure. I have had paroxysmal atrial fibrillation bouts in the past and it's like your whole body has worms on speed under your skin! Do you mind telling us if you ever have gotten to undetectable in those 14 years?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#8
soundoff
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Posted 28 October 2015 - 10:07 AM
So sorry to hear about your situation. Been on Tasigna for about 6 years.
No brain tumors yet that I know of.
Things like this have always been on my radar. Who knows if it's TKI or CML....Or just bad luck. Go to a reputable hospital for treatment. My choice would be Stanford.
No brain tumors yet that I know of.
Things like this have always been on my radar. Who knows if it's TKI or CML....Or just bad luck. Go to a reputable hospital for treatment. My choice would be Stanford.
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