Oct 28, 2011 - 9:03 am
I am a 25 year survivor oh NHL and have had many side effects, long term and short, from treatments if some of you don't know me. One of them has been worsening chemo brain or chemo fog as some call it. For years I have known this was from both chemo and total body radiation but no doctors would validate that for years and that caused me alot of distress - no validation. Today that is changing - thankfully for those who are coming behind me in treatments plus changing technology and research as well have hopefully improved things as far as having these kinds of late effects.
For many years doctors didn't think chemo crossed the blood brain barrier in the brain but now they admit and have found some drugs do cross the barrier and do effect the brain to some extent.
Because of my worsening memory and confusion espcially I sought out a memory clinic run out of a hospital and staffed by neuro surgeons who specialized in this, basically it was prior to all of this just for Altzheimer and Parkinson patients. Anywho, I went to be assessed 4 years ago and the testing showed some mild impairment but the CT scan of my head never got done until about 2 weeks ago when I demanded they get it done.
This morning I received a call from my GP's nurse that said that the CT of the head did show some mild changes and that from her perspective did explain why I was having some of the issues I had been telling her about for the last 20 years. You gotta have this stuff on paper, sheeesh. Anywho she said that there are no tumours or anything that even closely said 'cancer' but it did validate what I already knew, treatments can affect the brain, or at least the ones I had 25 years ago. All treatments are different to different people though so not to get too concerned - speak to your physicians prior to treatments of any kind and make your decisions based on what they know today. Take for example my total body radiations that were part of a bone marrow transplant back 22 years ago - I heard that they try not to do total body radiation anymore because of the extra damage it can do and I am living proof they are right about that. I don't know if they still use it in some cases but I know they try to stay away from that overall an exposure. That's tne new route it seems, do as little damage as possible. Makes sense to me but at the time so did blast it with full force and I am here 25 years later so hard to argue with the method. Still there is a price I pay for that longevity. Not whining or grumping, just saying.
Anywho that is the latest on my results. A CT scan done at the same time for my abdomen and pelvis which is where the first NHL showed up showed no changes to a cyst on my ovary that seems to come and go but is totally benign.
And so it goes on. In 2 weeks I have a specialists appt everyday of the week but one for more issues. And so it goes on.