Chemo Brain: a year after treatment ended.
I successfully finished treatment for Stage 3 Hodgkins Lymphoma in December 2020. Not long after my treatment began I noticed a decline in my cognitive ability. To this day I still have issues with fatigue, memory loss, inability to focus for long periods of time, executive dysfunction and heightened anxiety.
This is life altering for me and impacts on every aspect of my life, but no one seems to be taking it seriously. I was told it would improve a few months after I finished chemo. It has not really improved at all beyond my energy levels improving a bit.
There seem to be no resources available and very little research done. I found one study from 2020 in relation to this and the results indicated that up to a third of HL Survivors deal with long term cognitive issues after treatment. As this is a cancer that effects a lot of young people the effects over a lifetime can be extreme.
Why is no one talking about this?
I read another study about the impact of reduced estrogen on dopamine levels in the brain as well. It indicated that a reduction in estrogen for more than 10 days can permanently impact our ability to produce and regulate dopamine...which directly impacts executive function, memory, focus etc. Why is this not being discussed with female patients?
Someone telling me to use a planner/diary, write stuff down and that I just have to make myself do things is unhelpful. It is insulting!
This goes far beyond what such unhelpful advice can remedy.
I have mentioned my problems to my oncologist at every single follow up appointment and there is no help being offered to me?
Have ADHD drugs ever been used to help people in this country with long term chemo brain? I read a study from the US where they had some success with this. Why is this not being adopted here?
Why is this crippling side effect being dismissed as not important. It has ruined my life.
Has anyone had any success with getting help for this?