
Headaches
#1
Posted 07 April 2015 - 09:18 PM
#2
Posted 07 April 2015 - 09:51 PM
Hi Kitty,
When I get my bad headaches it's always in my right temple and it affects my right eye also. When a headache starts there for me I know its going to be a bad one and they last a few days sometimes. A lot of people on the board are using alleve, I keep forgetting to pick some up. I feel for you, lying down in a dark quiet room with a cool washcloth helps me. Billie
#3
Posted 07 April 2015 - 11:17 PM
I've had frequent headaches since I was a child. Had workups but never narrowed it down. I know mine are not from the CML. That being said, if I had symptoms like you've described, and it was the first time, I would head to ER. At the very least, I would make a doc appt and get their opinion. Then, if it turns out to be nothing more than a symptom of CML or side effect of med, you'll know next time. This is just my opinion, of course, not based on experience. Of course, I'm on high alert because I live in fear of stroke from the a-fib.
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest
#4
Posted 08 April 2015 - 09:19 PM
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#5
Posted 09 April 2015 - 11:04 AM
The headaches ares certainly a TKI side effect, primarily of Sprycel, Tasigna next, and Gleevec last. I have not seen enough data on Bosulif and Iclusig.
#6
Posted 24 April 2015 - 11:20 PM
By the way, I'd be a much better conversationalist with an old school key board.
#7
Posted 25 April 2015 - 07:20 AM
#8
Posted 28 April 2015 - 03:54 PM
I have been on 300mg bid Tasigna for just over a year and have gotten great PCR results but in November I started having daily headaches that never seem to go away. At times these have been severe but most days I have managed without the use of narcotics. I have seen my PCP and done all the work ups including MRI and nothing. PCP and Onc chalk it up to side effects so today I got a call from Onc and will be switched to Sprycel. I'm a little concerned on a number of levels...losing response, new set of side effects, etc. I'd be obliged to any recommendations on how best to navigate this transition of TKIs?
#9
Posted 28 April 2015 - 04:07 PM
I have been on 300mg bid Tasigna for just over a year and have gotten great PCR results but in November I started having daily headaches that never seem to go away. At times these have been severe but most days I have managed without the use of narcotics. I have seen my PCP and done all the work ups including MRI and nothing. PCP and Onc chalk it up to side effects so today I got a call from Onc and will be switched to Sprycel. I'm a little concerned on a number of levels...losing response, new set of side effects, etc. I'd be obliged to any recommendations on how best to navigate this transition of TKIs?
I see you are a diver - one thing that helped me was getting Nitrox certified. The enriched air made diving an absolute pleasure despite low counts (at the time).
You should supplement with Magnesium Taurate (125mg/twice a day) along with Curcumin. Curcumin will eliminate your headaches while taking Sprycel. I also took Sprycel, but am taking time off for good behaviour. No need for full dose given your Tasigna level. Ask your oncologist if you can start at 50mg first and go up if needed. Likely you will go down in dose (especially if you take Curcumin). Curcumin is great for headaches.
And keep on diving. On land as well as in the water.
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"
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