Sometimes I feel like I feel I am the only one with chemo brain post a bmt. Does anyone else suffer from chemo brain? If so what therapies did you go through and how long have you experience symptoms?
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i have not had a bmt but got very "thick" on 100 mg thal with 40 mg dex AND biaxin. very shaky,confused.....but was still able to drive and work on it. i quit biaxin after that 40 mg pulse of dex. i did try another 40 mg dex pulse,without the biaxin it was ok,but after that i had a spell off dex. i did 2 very low pulses,then 40 days off.....and more recently two 20 mg pulses. i don't get much confusion from this. thal makes me very woolly in the morning.....but some coffee seems to sharpen focus. i don't know about bmt.....there seems to be a lot against it with these emerging drugs at our disposal.....and the key might be HOW best to use the drugs in a particular myeloma case. joe
Does your confusion clear when you stop your therapies? Do you get better after a time? As for "how best to use drugs in a particular mm case," I just got a notice from the mmrf on a presentation on "clinical controversies in mm." The presentation will be held at the Cleveland Clinic. It is hosted by an onc named Mohamed Hussein. He is know around here for pursuing mm therapies and not recommending a pbsct. A presentation in Cleveland won't help you in Australia, but I will report back in the "general mm" s.d.i.
oh yes a presentation in cleveland will help! knowing more about how to keep afloat is most important. i have heard of hussein! didn't realize he was not generally in favour of SCT to such an extent. good search terms as well eh! "clinical controversies in mm" re. confusion with cessation of therapies......its not too bad just on intermittant 100 mg thal - works out around alternate day use,but i go 2- 5 days off and 3-6 days on type of thing......depends! any tingles and i back off. the dex use is not terrible....i use 20 mg in the pulse for 3 days and taper off with 8 mg,then 4 mg and i use 2.5 mg of amphetamine on the first day off......so there is no 2 nd days off crash really. i think my short term memory is still fairly good......you know i notice that i still remember lots of everyday stuff.....and i work as a painter,drive ok etc etc. however,i had a break from thal recently for 10 days and it feels better than being on it,even though i don't get so foggy now on thal.....this was more noticeable in january when i began using thal. joe
I will take careful notes at the cleve. clinic, controversies in mm seminar and report back to this site. I can't say that Dr. Hussein is against a sct, just that he tries to manage one's mm as long as possible before a sct. Do you supplement during your thal and dex? Since you are a painter and therefore around toxic paints, have you considered detoxification of any kind? David
Hi! I too suffer from Chemo Brain, but I don't think that its specifically Thalidomide. I've had it for four of my six years with MM, and I believe it is a combination of several things. 1. Medications like Thalid., Velcade, Rev, etc. 2. Pain meds like Fentynal and Codine/Morphine 3. Exhaustion 4. Natural Aging process
A combination of all of these leaves one muddled, forgetting things that are very familiar, and slowing down overal in normal brain function. I don't think it's like dementia or alziemers -- because you are very aware of what is happening and though it may take a few minutes, you can retrieve the information eventually!
With regard to managing it, I have found a number of strategies that work for me. I keep lists, a calendar with all appointments and activities listed for every day, an active address book, email folders, and things of this nature. All of these help me to organise my life and keep me on my toes. I hope this can be of some help to others. By the way, on this site I'm finding the use of initials/acranyms a bit daunting -- making it difficult to understand what people are talking about. Thanks, poppycath
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