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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Recovery from chemo brain after treatment?

by Paul58 on Fri Jul 07, 2017 1:55 pm

Hi Everyone,

I just finished 6 months of weekly CyBorD (Cytoxan, bortezomib, dexamethasone) treatment. My first such treatment in 2013 and 2014 only lasted 4 months, and I didn't notice much cognitive impairment or 'chemo brain.' This time around, it's been quite noticeable: Memory, ability to focus and get things done, the ability to organize well, etc., all seem to have taken a hit after six months. I'm encouraged that no detectable myeloma is left and that I'm in complete remission once again. Physically, side affects were minimal. But I am feeling utterly discouraged with my ability to focus, think analytically, complete writing projects, remember things I need to do (even when I've put them on a calendar) and make progress with language study. (I speak two languages besides English and was working on a third).

My question is: Does it get better? Will things begin to improve now that I'm not doing induction therapy? (I will be starting some kind of maintenance therapy in the next month or so.) Are there things I can do to regain or improve overall cognitive function?

I'm really feeling distressed and somewhat depressed as I wrestle with this.

Thanks for any input or advice!

Paul

Paul58
Name: Paul J
When were you/they diagnosed?: October 2013
Age at diagnosis: 54

Re: Recovery from chemo brain after treatment?

by torimooney on Sat Jul 08, 2017 2:13 am

I still suffer from chemo brain, but it is much better now that I stopped the dex..It took 6 months before I saw any improvement.

torimooney
Name: tori
Who do you know with myeloma?: myself
When were you/they diagnosed?: apr 2012
Age at diagnosis: 64

Re: Recovery from chemo brain after treatment?

by Victor L on Sat Jul 08, 2017 4:55 am

Hi Paul,

I am familiar with your symptoms of 'chemo brain', having been on and off similar treatments to yourself since 2012 – the fatigue and tired eyes, the struggle to remember words which should come immediately.

For myself, such treatment side effects usually disappear within two weeks of treatment breaks beginning. My longest such break lasted over two years during a remission, and I felt 100%. When I had to recommence treatment in 2016, the similar side effects came back within a month. But it helps if I remember the phrase "No pain, no gain". We have the benefit of truly amazing treatments which kill cancer cells, these side effects are a price well worth paying !

I hope all goes well for you Paul, Good Luck!

Victor L

Victor L
Name: Victor L
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 58

Re: Recovery from chemo brain after treatment?

by Nancy Shamanna on Sat Jul 08, 2017 8:26 am

Hi Paul, I think that those are good comments from Victor and torimooney. I also suffered from 'chemo brain' after my stem cell transplant and wrote a column about it...

URL to article: https://myelomabeacon.org/headline/2012/09/13/northern-lights-weather-report-fog-and-freezing-rain/

I am much better now, but remember that time of confusion. I did also find out though, that in the ability to memorize, many people lose some sharpness that way due simply to aging.

Just keep on working on mental challenges, and hopefully your abilities will come back to you.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Recovery from chemo brain after treatment?

by Gala on Sun Jul 09, 2017 4:38 pm

Hi

Another thing to consider is to limit or stop other medications that may contribute to the cognitive im­pair­ment, such as some antihistamines, sleeping pills, anti-anxiety medications, or anti-acid medications.

Gala
Name: Gala
Who do you know with myeloma?: sister, LgA-k
When were you/they diagnosed?: December 2015
Age at diagnosis: 48

Re: Recovery from chemo brain after treatment?

by Paul58 on Sun Jul 09, 2017 7:51 pm

Thanks so much torimooney, Victor, Nancy, and Gala, for the encouragement and helpful comments.

During treatment, I was also taking a fair amount of ranitidine (Zantac, an antacid) to deal with the acid reflux that was exacerbated by the dex And I've heard that these antacids can negatively affect short-term memory.

I'm working on memorizing some Scripture passages and catching up on some thought-provoking reading, which I also hope will get the brain firing on all cylinders again – or as close as I can get! Maybe I'll even pull out the Chopin and put myself through the paces on the piano!

Feeling more hopeful today,

Paul

Paul58
Name: Paul J
When were you/they diagnosed?: October 2013
Age at diagnosis: 54

Re: Recovery from chemo brain after treatment?

by mplsterrapin on Tue Jul 18, 2017 1:29 am

Sorry to hear about these difficulties. That must be so frustrating!

I don't know if it is available where you are located, but some places have, I'm not sure what to call them, sort of "rehab from chemo" clinics. There's one here in Minnesota with the stated goal to help patients get back to where they want to be after chemo, whether that be physical or mental or emotional or whatever. We were referred to this by several doctors who said there are aids to employ to help manage life with chemo brain, although I don't know what they are because my husband keeps backing out of his promise to seek help for the neurological effects he has suffered. Perhaps it is worth asking your oncology clinic if they know of any such places.

Also, I love to hear about all your languages and encourage you to continue with them, even if you feel like it's harder than it used to be. Studies have shown that language study (regardless of how proficient the student actually becomes) does great things for neural connections that improve memory and other brain functions and stave off some of the natural effects of aging. So I imagine it would be especially great exercise for your brain when you're trying to sharpen some abilities you had before treatment. Sure couldn't hurt since you obviously enjoy it!

Congratulations on your remission, and hope you have luck with improved cognitive function as your body recovers from the treatment.

mplsterrapin
Name: Ari
Who do you know with myeloma?: Husband
When were you/they diagnosed?: Fall 2015
Age at diagnosis: 54

Re: Recovery from chemo brain after treatment?

by Paul58 on Thu Aug 03, 2017 12:29 pm

Mplsterrapin - Thanks so much for your encouraging words.

And just to update everyone, I am actually doing much better than I was a month ago. Still not 100% (although that's entirely subjective). Better definitely better than immediately after my treatment regimen ended. I'm back to writing and language study, both of which seem to help. Now I'm about to start maintenance therapy, and I'm really hoping this wont set me back like the full-on treatments!

Paul58
Name: Paul J
When were you/they diagnosed?: October 2013
Age at diagnosis: 54


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