Chemobrain testing

bluerose
bluerose Member Posts: 1,104
edited November 2022 in Long-Term Effects of Treatment #1
I am a 20 year survivor of Non Hodgkins Lymphoma and have many side effects and one of them is chemobrain. I first noticed forgetfullness but now have cognitive issues as well. Finally my doc sent me to a Memory Testing clinic where they test for things like Altzheimers and dementia and the neurologist put me through a battery of tests but the big thing that came out of that testing procedure and analysis was the validation from the neurologist/neurosurgeon that yes chemobrain does exist in some long term survivors. He said they are seeing it now and recognize it. It can appear earlier in survival as well and depends on what drugs you were on and radiation.

17 years ago when I first started to report issues with memory and other physical issues that I knew were related to treatments I was asked if I had seen a psychiatrist lately. lol. Now it has all come out in the wash with so many survivors living long past what years before we would have lived and with the advancements like computer contact through sites like this we started to realize that 'hey wait a minute it's not, just me'. Chemo brain is an accepted issue now that they realize that SOME chemo drugs do cross the blood brain barrier which before they thought they did not. The neurologist explained that it wasn't really 'damage' perse but a general weakening of the brain after certain chemo drugs, so that normal things like aging would not be as well tolerated in a brain that was 'chemoed' compared to one that was not.

Anywho thought you might be interested in getting tested if you can find a Memory Clinic near you.

All the best, Bluerose

Comments

  • pkaz53
    pkaz53 Member Posts: 84
    #2
    chemo brain
    I'm a 6 year survivor of sclc and have side effects from treatment.
    About six months after chemo, radiation and pci to the brain I noticed my memory wasn't what it was prior to my treatment --I thought that in time my memory would get better well it hasn't.
    In Dec of 2009 I started to see a neurologist due to some visual distortions that I was having from migraine headaches- I also told him there were times that I would converse with others about a subject and in the middle of my conversation I would stop and my thoughts would vaporize into thin air- he suggested that I get tested for chemo brain. I completed testing in Feburary and yea I have chemo brain ---- It's becoming more accecptable as more of us survive, long term. I'm not complaining because the alternative is unacceptable.

    Bluerose, I wish you the best keep on surviving

    Paul
  • bluerose
    bluerose Member Posts: 1,104
    #3
    pkaz53 said:

    chemo brain
    I'm a 6 year survivor of sclc and have side effects from treatment.
    About six months after chemo, radiation and pci to the brain I noticed my memory wasn't what it was prior to my treatment --I thought that in time my memory would get better well it hasn't.
    In Dec of 2009 I started to see a neurologist due to some visual distortions that I was having from migraine headaches- I also told him there were times that I would converse with others about a subject and in the middle of my conversation I would stop and my thoughts would vaporize into thin air- he suggested that I get tested for chemo brain. I completed testing in Feburary and yea I have chemo brain ---- It's becoming more accecptable as more of us survive, long term. I'm not complaining because the alternative is unacceptable.

    Bluerose, I wish you the best keep on surviving

    Paul

    Hey Paul
    Thanks for your comments on my posting. I forgot I posted in here and you know why? lol, chemobrain strikes again. lol.

    You are right about recognition of chemobrain today in medicine and thank goodness, it's about time. When I was treated years ago and complained about memory issues and cognitive problems I was looked at like I was nuts and directed to a shrink, not to talk about chemobrain but to blame it on something else, not the treatments. I also think that we are expected to be so grateful for being allowed to live with the treatments so much so that we feel that we cannot talk about the downsides of all the treatments and that isn't fair either. Now I am not blaming anyone really, still don't know for sure if they just didnt realize what long term survivorship might be like and the side effects or what.

    I used to feel very invalidated about all of my aches and pains and memory issues but in the last 10 years have really seen a shift to validation which is great for everyone.
    That is why sites like this are so important, they keep us all connected so we can recognize the patterns and pass the info onto our specialists. Pretty annoying for them, lol.

    Anywho take good care and I will do my best to keep surviving. Now what were we talking about again? lol.

    Blessings, Bluerose
  • meena1
    meena1 Member Posts: 1,003
    #4
    bluerose said:

    Hey Paul
    Thanks for your comments on my posting. I forgot I posted in here and you know why? lol, chemobrain strikes again. lol.

    You are right about recognition of chemobrain today in medicine and thank goodness, it's about time. When I was treated years ago and complained about memory issues and cognitive problems I was looked at like I was nuts and directed to a shrink, not to talk about chemobrain but to blame it on something else, not the treatments. I also think that we are expected to be so grateful for being allowed to live with the treatments so much so that we feel that we cannot talk about the downsides of all the treatments and that isn't fair either. Now I am not blaming anyone really, still don't know for sure if they just didnt realize what long term survivorship might be like and the side effects or what.

    I used to feel very invalidated about all of my aches and pains and memory issues but in the last 10 years have really seen a shift to validation which is great for everyone.
    That is why sites like this are so important, they keep us all connected so we can recognize the patterns and pass the info onto our specialists. Pretty annoying for them, lol.

    Anywho take good care and I will do my best to keep surviving. Now what were we talking about again? lol.

    Blessings, Bluerose

    I completed treatment for
    I completed treatment for breast cancer last May, and i am having problems with chemo brain. Especially at work. Also, i used to love to read and now i find it very hard to concentrate and finish a book. I thought that going through cancer treatment was the hard part, but now i am struggling so hard to get back to normalcy. I am so worried that i will lose my job and not be able to work. I have to work for the insurance and to pay bills. It is so stressful. Are there any solutions to this. I wonder if it came down to it, if i could get social security disability. I also am stage 4, as the cancer spread to my bones. Any thoughts on this would be appreciated.
  • bluerose
    bluerose Member Posts: 1,104
    #5
    meena1 said:

    I completed treatment for
    I completed treatment for breast cancer last May, and i am having problems with chemo brain. Especially at work. Also, i used to love to read and now i find it very hard to concentrate and finish a book. I thought that going through cancer treatment was the hard part, but now i am struggling so hard to get back to normalcy. I am so worried that i will lose my job and not be able to work. I have to work for the insurance and to pay bills. It is so stressful. Are there any solutions to this. I wonder if it came down to it, if i could get social security disability. I also am stage 4, as the cancer spread to my bones. Any thoughts on this would be appreciated.

    Hello Meena
    Iam so sorry to hear about your cancer spreading, sounds like you have been in quite the battle for a long time with all of this. I wish you the best, there is always hope with new treatments, clinical trials and amazing turnarounds happen all the time.

    As for chemobrain and disability I don't know how it works in the United States, maybe someone who lives there could comment as I live in Canada. I can't believe though with your recurrance and symptoms you are mentioning that if you work with your family doctor and specialists/oncologists you may be able to qualify based on some of your symptoms from the cancer or reduced mental functions. HOw are your cognitive functions?

    Here in Canada our disability depends on input from specialists to our disability dept in the government and we have of course categories that will qualify so I guess it depends what your symptoms are and how severly they affect your day to day living.

    I wish you the best and hope that things turn around for you and that you will be successful with your application for disability. The key for me was getting a family doctor who would go the distance to help me qualify for disability by relating my many disabilities so that the government would realize that I do in fact qualify.

    Blessings, Bluerose
  • tinybubbles
    tinybubbles Member Posts: 1
    #6
    chemo brain

    I went through chemo in 1998, Idarubicin and ARA-C. No one even mentioned chemobrain. And back then, I don't even know if Google existed? ;) But, I experienced it, that's for sure. And I still experience it.

    However, I do want to share that when I took flaxseed with shakes for about a year, I saw a very tangible improvement in my short-term memory. It took about 6 months to see the effects. But, I got too hopeful, thinking I had been cured, and I stopped taking it.

    Now, in my 50's, I'm ready to add it back into my diet on a daily basis (past attempts didn't go so well). I did find a flaxseed oil that lasts longer than most, by a good company. So, hopefully that'll help keep me motivated.

    All the best to you!

  • Viking51
    Viking51 Member Posts: 21
    #7
    tinybubbles said:

    chemo brain

    I went through chemo in 1998, Idarubicin and ARA-C. No one even mentioned chemobrain. And back then, I don't even know if Google existed? ;) But, I experienced it, that's for sure. And I still experience it.

    However, I do want to share that when I took flaxseed with shakes for about a year, I saw a very tangible improvement in my short-term memory. It took about 6 months to see the effects. But, I got too hopeful, thinking I had been cured, and I stopped taking it.

    Now, in my 50's, I'm ready to add it back into my diet on a daily basis (past attempts didn't go so well). I did find a flaxseed oil that lasts longer than most, by a good company. So, hopefully that'll help keep me motivated.

    All the best to you!

    Two words- Oxygen Therapy. i

    Two words- Oxygen Therapy. i just suffered a small stroke and mine is on the way. Oxygen repairs the brain

  • shadow01
    shadow01 Member Posts: 15
    #8
    Chemobrain testing

    I don't need to be tested ... I've got it.  It's bad.....  My friends know I have it, too.  And they know, if I suddenly lose track of a conversation, or can't pull up the word I need to say next, to start cueing me (we were talking about this, you were saying that, etc.).  I've been known to forget what a conversation is about in the middle of a sentence ... sometimes even in the middle of a word.  It goes something like this:  blah blah blah bl.... [1--2 second pause] What were we talking about?   All I can really do is laugh about it when it happens, and never allow myself to take it too seriously.

  • vsinn2000
    vsinn2000 Member Posts: 6
    edited May 2021 #9
    shadow01 said:

    Chemobrain testing

    I don't need to be tested ... I've got it.  It's bad.....  My friends know I have it, too.  And they know, if I suddenly lose track of a conversation, or can't pull up the word I need to say next, to start cueing me (we were talking about this, you were saying that, etc.).  I've been known to forget what a conversation is about in the middle of a sentence ... sometimes even in the middle of a word.  It goes something like this:  blah blah blah bl.... [1--2 second pause] What were we talking about?   All I can really do is laugh about it when it happens, and never allow myself to take it too seriously.

    Chemobrain

    I noticed it's been some time since your post. Are you able to post now? I have many questions. 

  • iwanttoenjoylife
    iwanttoenjoylife Member Posts: 21 Member
    #10

    I too seem to have problems with connections in my brain, simple things like deadlines for my kid’s college applications, I have been nothing it more and more lately.

  • satenama
    satenama Member Posts: 8 *
    #11
    https://csn.cancer.org/discussion/189661/chemobrain-testing

    Yeah me too, 28 year survivor of Leukemia, tx was 3.5 years of chemo, including chemo injected directly into the spinal fluid and brain (intrathecal).

    I have various side effects including cognitive decline, memory loss and aphasia (difficulty with word recall). Since I knew my impairment and why it's never occurred to me to get tested or discuss prognosis, so thanks for your info on that. My poor family, though, I refuse to let them finish my sentence or give me the word, because if I don't practice those connections I know I'm going to loose them faster. They are so loving and patient with me. I fear the future, fear dementia and worry about putting my husband and kids through that. Our kids are still young, and my husband is younger than me. I can't think of anything more horrific for me to burden upon them. I know none of us get out of Life alive, but I pray God has something else in store for me, an exit a lot less cruel and dragged out for them witness.

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