Help with chemo brain

[Carol.hope]

Thanks, Idelle.
I'll be interested to hear what you think, and how we might work together to help everyone with chemo brain - long-term or short - get good information that makes a difference to their lives.

Carol

Hi Carol. I am so looking for help with my "chemo fog". It is 3 years post chemo and it is really bad. Yesterday I rinsed our dinner dishes and went to the refrigerater to put them in instead of the dishwasher. I forget whether I took my pills or took my cats. I remember things from precancer but can't remember something from yesterday or even 5 minutes ago. I have tried special teas, supplements etc. Nothing helps. I really think having chemo, and herceptin for almost 6 years damaged my "brain". I love to read but even that is difficult because sometimes I read the same pages over or foget what I read yesterday. I have discussed this with my Dr's and they say "eventually it will get better". Oh well, enough of that. I'm happy to be alive so and I have to deal with it. If anyone knows about a supplement or whatever that helped them, let me know. Mary L

Oh, by the way I forgot my password. That's why I am unregistered. Now do you believe I have a pretty bad case of "chemo Fog?" Mary L

[KirisMum]

Idelle, I meant to thank you so much as well for coming on here, and for your wonderful book, which I am taking up to Kiri this weekend. Carol, thanks for those recommendations, which I will pass on to her as well.
Her oncologist is very thorough, so I'm sure they've discussed the A/C and her need for it, but I will call this to her attention. She is very careful about her supplements, etc, and runs everything by her docs, but thanks for the warnings.

[imdavidson]

You're welcome, KirisMum. My pleasure.

[Carol.hope]

Mary L,
I do so understand your chemo brain! It sounds like mine. We are in a different category from those who had fuzzy brains during chemo and recovered within a year. I learned from my MDs and cognitive therapists that it's a kind of brain injury. You have my sincere sympathy - losing the brain you used to know is a BIG deal!

I know reading is difficult. I wrote Beyond Chemo Brain: Recovering after Surviving with attention to making it easy to read, for people like me and you. It's the book I wish I had had years before. I hate to sound like I'm advertising on this wonderful site, but other chemo brain people who've read Beyond Chemo Brain say they have benefited greatly.

How about clicking on www.BeyondChemoBrain.com and see what you think? If affording is it a question (since most of us with this long-term chemo brain injury can't earn a living), you can request that your library order it.

Again, I'll try to attach a link to the summary list of 20 Recommendations for Recovering From Chemo Brain (and I am so glad to finally be able to do things like attach a link!)

Beyond Chemo Brain lists the specific brain-supportive supplements and why/how they are needed. It does not give dosages because I am not a doctor, but for people like us, who finished chemo years ago, you just need to ask your doctor about interactions if you're on any drugs. Another book, The Better Brain Book, by Dr. David Permutter, does give dosages (and he is a doctor).

Another thing I learned recently is to make sure you are getting lots of protein in your diet, as the body needs protein to build new cells. My new oncologist recommends 50-60 grams a day, which is way more than I had been eating.

My best to you! - Carol

Carol, thankyou so much for your message of support. I was feeling like I am the only person to suffer from this ailment for so many years. Most people gradually get over it but, trust me, I think mine gets worse. I will get your book. My husband also says thankyou. He realizes what I am going through and feels bad about it. He is a very loving, patient husband. Are you able to remember things from precancer days? I seem to be able to do that much better than short time memory. I worked in the medical field and I am unable to even think about going back with my "chemo fog". I had adriamycin, cytoxin and taxatere for 9 months. Then when my IBC recurred I had carboplatin for 3 months and then stayed on Herceptin for 5 years, only stopping when my heart was showing signs of slowing down. That is alot of chemo. I am off of Herceptin for 3 years and I am not showing any signs of improvement. Again, thankyou for your message. I am going to buy your book and "try" to read it. Have a Happy Thanksgiving. I actually forgot my password and don't understand how to get a new one. Oh well, thats why I am unregisterd. Oh well, no big deal. Mary L

Carol, you gave me hope. Thankyou. Mary L

[Carol.hope]

Hi Mary L,
That's what my new oncologist said. I asked her if there was any hope for my brain, and she said, "Of course there is, that's what your book is all about - hope!"

First, I looked up getting a new password (something I am pleased to be able to do!). Here's the scoop:
I forgot my password. What can I do?
If you forget your password, you can click on the 'Forgotten Your Password' link. This will appear on any page that requires you to fill in your password.
This link brings up a page where you should enter your registered email address. An email will be sent to that address shortly, with instructions for resetting your password.
Since passwords are encrypted, there is no way to resend your original password. This option provides you with the ability to reset your password.
You must be able to receive emails to your registered email address for this to work. You may need to check your spam filters and folder if you do not see this email in a few minutes.

I do believe that it feels like it's getting worse. In fact, chemo brain (for those of us with chemo brain injury) does get worse for a while, because the stem cells that would become new brain cells have been damaged, so we are not making enough new brain cells to stay ahead. This is why feeding them with brain-supportive supplements is important. (I'm sorry if this is too complicated. My point is: I understand, and there IS hope!).

That is wonderful, that your husband is supportive. That means a lot. Positive energy is important when things are so hard.

My memory is pretty good now. For a long time, yes, the older memories started coming back, but I could not form new, short-term memories. I still do "stupid" things because of this, but learning not to berate myself helped.
Here's how I used to describe my life: "I used to manage multi-million dollar projects, and now I spend most of my time looking for something I had five minutes ago!"
I still can't remember if I did or not did not just do something that I was going to do. I give myself a mental gold star when I remember something somebody told me last week! It's happening more now! Yea!

Happy Thanksgiving to you, too.
Carol

[Mary L]

Carol, thankyou for the lesson in getting a new password. I think I will tape it to my computer as it is not chemo fog friendly. It's letters and one number. I better get going on my cleaning. Thanks. Mary L