I'm finding the BMB conversation very interesting. When my journey began, I was more freaked out by the idea of a BMB than of the cancer itself. I've had two so far, and both were done as outpatient in radiology under sedation. Now, my hem/onc does them in his office. I have panic attacks every time I go for an office visit and hear someone come out talking about how painful theirs was. Don't know if I'll ever need another one, but after reading these comments, I'm gonna follow suit and refuse unless I can be knocked out.
Time to look for a new doc?
Posted 21 October 2015 - 09:00 PM
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
Posted 21 October 2015 - 11:07 PM
"...side effects of itchy scalp driving me crazy. Dr. says no one has ever had that complaint before."
Itchy scalp is one of the more frequent side effects of TKI drugs. Especially Gleevec and Tasigna. Only itch with the flat of your palm, never with the fingernails or it will only get worse.
Posted 22 October 2015 - 05:36 AM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Posted 22 October 2015 - 08:31 AM
My scalp doesn't itch so much as flake, ooze, and crust. It's almost impossible to not scratch off the flakes and waxy sebaceous plugs. It varies in severity, wish I could figure out what diet/shampoo/treatment combo would work.
<.01 IS 10/16 hopkins didn't report actual percentage
.007 IS 6/2017
<.01 12/2017 again no actual percentage but didn't see the report myself yet
Posted 22 October 2015 - 08:56 AM
that's hilarious! thanks for making me laugh so early in the day! Benadryl helps,and a liquid gel from my derm.
Ah I have the opposite approach... I dig and scratch like crazy until my head feels like it is going to spontaneously combust. That will usually keep the itch at bay for a little while. So far no flames but I swear I smelled smoke once.
Posted 22 October 2015 - 10:11 AM
I was very popular with my children when they got poison ivy, because I told them to go ahead and scratch - it makes no difference in the end and it definitely, DEFINITELY feels so much better in the short run. Goodness, what a terrible moral lesson that was! Bad mother.
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.
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