POG Group - ALL Surivor - Long term chemo brain

nicholastrisel

I was diagnosed in 1995 with Acute Lymphoblastic Lymphoma Large T-cell, Non Hodgkins. I was involved in a study of chemo sessions, nothing experimental just dosage and time intervals. I have been suffering from Chemo brain for years and it has progressivly gotten worse. College was tough and life has gotten tougher. It is very frustrating with little for answers out there. Most oncologists that I have visited do not seem to be up on the after effects of chemo long terms and it seems little is known. I am not sure if my situation is a rare one or if folks are struggling in the masses with this, what seems to be to me as a early on set of mild Alzheimers (sp) Anyone share the same issues or have an answers out there?

nicholastrisel

Age
I guess it would help if I stated my age - I am 29.

CountryGal7557

about one year of chemo brain
Hi Nicholas, I don't have the long term experience of chemo brain, but I still have issues with not remembering and when someone tells me the answer, oh.....now I remember. yeah it sucks.

when I saw my regular physian, she told me that some of her patients who have had chemo treatments, their memory improved after two years, so she said give it time. but it sounds like yours is getting worse as time goes by.

I'm doing little things to help me remember important dates/events. like adding the "Yellow Sticky note" to my droid's home page. sending yourself VM's, jotting important dates and meetings in several spots (calendar at home, notepad on desk and Outlook events with reminders)
I think you get the picture.

there was a teleconference done by CancerCares specifically about chemo brain. I'll find it and post later.
Janelle

CountryGal7557

cancercare.org
http://www.cancercare.org/connect_workshops/13-chemobrain_2011-04-12
Chemobrain: The Impact of Cancer Treatments on Memory, Thinking and AttentionPart I of The Ninth Annual Cancer Survivorship Series: Living With, Through and Beyond Cancer

Good Luck!
Janelle

bluerose

Chemo brain getting worse for me too, 25 year survivor here
I have been to a Memory Clinic and will be going again in the next few months for a recheck as some things are getting worse in regards to my chemobrain.

When I first saw the neurosurgeon he said that they were seeing more of this aftereffect of treatments in more patients and confirmed some things that I have long thought.

First off he said that some chemo drugs do in fact cross the blood-brain barrier into the brain where years ago they thought they did not - some drugs, not all he said. I forget what he said about radiation of the head, sheesh, but I think he felt it played a role too in the issues I now face.

He said that as I age I will probably notice it more because the aging process of the brain is on top of previously altered brain tissue from the drugs. Sort of like a shakey foundation, so any stresses over time like aging will be more obvious perhaps.

He said that I don't have dementia or Altzheimer's, whew, but he did see cognitive impairment to an extent. I see that mostly and that is what is bugging me the most. I am not only forgetting little things but I forget major points of discussion with doctors, friends etc. It is soooooooooooooooooo embarassing. I recently went to a neurologist for neuropathy and she asked me about any diagnosis for my back issues and I said 'no'. WHAT THE HECK. When I got home I realized I forgot to tell her I was diagnosed with lower back disc degeneration years ago plus other medical issues. Not even prompting by her asking me the right question shook the memory at all. I gave her totally the wrong impression and she was going to do tests that were already done. OMG. I freaked out. I did the same thing with another doctor, and to this day she has the wrong opinion of a situation I was dealing with because I simply left out the key point. As if it never freakin happened. Oh it was so scarey.

I was talking with a specialist at a big cancer hospital and she said that they see this kind of issue in people with multiple health issues like me. I don't know if she was getting at 'overwhelmed' or what but I guess it makes sense. I think I am one synapse short of a happy meal these days. lol.

There is also that usual 'why am I in this room?' thing when I am walking around the house - totally forgot why I came in the room - but at least I am still walking around in MY house and haven't yet gone into someone else's by mistake and wonder 'why I came into a room', in their place with my forgetfullness and confusion. lol. Of course it's early yet today. Sigh. lol.

The neurosurgeon said that there is little they can do about chemobrain but they are having some success with some people using antidepressants plus a couple of other things I forget now. Sigh.

Blessings,

Bluerose

TJ74

training for doctors
I here ya when you say that docs aren't up to date on long-term side affects. I think it should be mandatory for Oncologists to have to do a round of some chemo so they could relate a little. lmao I have been referred to psychiatrists a few time over the last 20 years cause no doc could figure out what I was talking about... someone thought I was a little cookoo:)

anonay

Maybe an option?
My husband went through 6 rounds of r-chop therapy, and yes, the chemo brain is frustrating for all. I never really believed in naturopaths, but after the treatment, he wanted to get back on his feet as soon as possible. They gave him a consult and an armload of vitamins, digestive "rebuiling" aids, brain booster vitamins, etc. Within a week there was a marked improvement in his energy and cognition. The only reason we chose this route (AFTER chemo was done), was because "what could vitamins hurt?" Now I'm a believer.

jimwins

"one synapse short of a happy meal"
Stealing Bluerose's comment - it made me laugh and that's
a good thing.

I did a little googling and found these things which I'm sure
you guys may have already researched:

Discussions of chemo brain:

http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/chemo-brain


http://www.mayoclinic.com/health/chemo-brain/DS01109


Article about small study with "ProVigil" to combat chemo brain:
(This is from 2007 and states it was a small study but interesting)

http://www.bcadvisor.com/drug-may-help-combat-chemo-brain-1059212.html


Regarding anonay's post, I certainly think vitamins could be an option
as long as you check with your doctor and/or similar expert because
supplements can interfere with medications, etc.

Regarding naturopathic medicine, I don't have a solid opinion on that currently.
I probably don't have to tell you to be careful of all the "crap" that
is out there on the web .

Wishing you well and please share what you learn.

Jim

<<>>


Bluerose, thanks for making me laugh....

More than you ever want to know about a "Happy Meal":

http://en.wikipedia.org/wiki/Happy_Meal