Beyond chemo brain

[Carol.hope]

Dear friends,

I’d like to tell you about a new book I have just published, about my experiences with long-term chemo brain. It’s called Chemo Brain: Recovering after Surviving.






It includes:

• brief background on research into both chemo brain and brain injury,
• stories of my experiences learning to understand and overcome chemo brain injury, and
• specific elements of the recovery process, including

• creating a healing environment
• coping with cognitive deficits
• supporting the brain and the whole person during recovery
• learning from the chemo brain experience.

Look here for more: www.BeyondChemoBrain.com.

I joined HER2Support in 2005, and was so encouraged by Christine’s willingness to talk about her experiences. Now I hope that others may be supported by reading about my four years (so far) with chemo brain injury. For sure, we are not alone! Finally this month even the American Cancer Society has announced that chemo brain is real!

You will find several references to HER2Support in Beyond Chemo Brain. I have felt the love, support and encouragement from everyone. And learned much from the articles you post.

Writing Beyond Chemo Brain was a huge project for me, and an important part of my healing process. Knowing you were all there, supporting each other, and thereby all of us, helped me get through it. Thank you!

With much gratitude,
Carol Devenir

PS Sorry, I can't figure out the formatting. Chemo brain!

[flynny]

I have a friend who is going through chemo and didn't understand if he was crazy or what. I told him it was real and I thank you for sharing this wonderful book to the rest of the world!

Sarah

[Carol.hope]

You're welcome, Sarah. I think more doctors are getting it now, but we've had to endure years of docs thinking we're whiners or just stressed. My hope is that soon no one else has to live with this reaction from the very people they look to for healing.

Family members need to know about chemo brain, too, in order to figure out how to deal with, essentially, a different person than they were used to before.

Good luck to your friend.

- Carol

www.BeyondChemoBrain.com

[Becky]

Writing a book is a marvelous and wonderful accomplishment. Congratulations Carol!

[Jackie07]

Love the cover! And what an accomplishment!

[Carol.hope]

Thanks, Becky and Jackie. I appreciate your encouragement. Sometimes from "inside the trenches" it's hard to see how well things are going. So nice to have HER2 buddies!

-Carol

['lizbeth]

Carol,

I'm delighted you wrote this book. I just finished reading Adelle Davidson's book "Your brain after chemo".

When receiving chemo therapy the cognitives issues were not addressed. Every focused on diarhea, fatique, neuropathy, etc.

I thought any cognitive deficits would clear up within a year after chemo. While I am better I am not the same as I was bc (before chemo).

I want to enjoy a higher quality of life so off to the neurologist I went for a consult. He told me that I was too high functioning, that I could have hours of neuro psych test done but the outcome would be no different. Afterwards there wouldn't be anything they could do.

I applaud you in publishing a book. Bravo! I hope you have helped all of us to be closer to having the quality of life we previously enjoyed.

[Barbara2]

Chemo brain has been an issue for me all along (since Fall of 2002) but it seems that my memory has continued to improve little by little with the passing of time through the years. It was slow in coming, but at least it is back (with a few changes but I'm not complaining). Maybe I'm trying harder after seeing a neurologist recently (at the suggestion of my onc) who ran a couple tests plus the "memory test" and everything checked out ok.

Loss of memory function was a very big problem for me in the early years. During chemo my memory was totally shot. I could not repeat a conversation or tell of its content, right after the words were spoken.

I look forward to purchasing this book. What a benefit to so many of us who have been there, without answers or understanding as to why. Congrats on your achievement.

[AlaskaAngel]

Carol, I'm just sorry that no one did a book for YOU when you were hit with it, with no preparation or explanation or thoughtful consideration from anyone -- especially considering that chemotherapy has been used for decades.

When I considered treatment in 2002, I raised the question about it. It seemed to me that if there were concerns about what it might do to the heart, maybe there were reasons to be concerned about what it might do to the brain and the rest of the nervous system. My PCP said he didn't know. My onc said that in 25 years of practice he "only had a few who were really incapacitated". Chemo brain was considered mostly to be something patients "made up" that couldn't be verified -- in other words, in all those years of prescribing treatment no one had really done much of the homework to find out who was affected or why, or how to avoid it or deal with it.

Thanks for helping to provide something BETTER for others out of your true experience with it.

Best to you,

AlaskaAngel

[Mary Anne in TX]

If I've made it up, I did a REALLY good job!!! ma

[Carol.hope]

Thanks, you guys.
It feels good to be acknowledged. Really, if we were going to make something up, why would it be something that makes our lives so hard?! Yes, I decided to write the book I wish I'd had. That's what so many of you do through this board - offer the help you could have used. THANK YOU!

The shocking thing is that there is research reported in medical journals as early as 2002 that clearly shows that chemotherapy causes fewer new brain cells to form and cognitive problems. And yet, apparently the information never filtered down to our oncs? I'd ove to see somebody (who doesn't have chemo brain!) to go to oncology conferences and give a presentation. Any volunteers? Think anybody would pay to sponsor this? Maybe we can put our heads together and figure something out for next year.

Thanks for being there.
- Carol

[Cal-Gal]

Fabulous---good luck!!!!

[Jackie07]

I think 'chemo brain' is now acknowleged by medical practitioners though not using the exact term.

On the report of my 'complete neuropsychological profile', my doctor had written that one of the (3) reasons for my cognitive decline was the 6 doses of chemotherapy in 2003 and another 6 doses in 2007.

It clearly tells me that chemotherapy has contributed to my cognitive problems.