Help with chemo brain

[KirisMum]

(This is pretty much a cross-post from the breastcancer.org board, so for those of you who go to both, my apologies for being repetitive):

My daughter is handling her chemo (weekly Taxol, daily Lapatinib) well so far - just a few sniffles, dizzy spells, a bit of a headache. Her spirits are good and she's back to riding her horses, but she's concerned about her inability to focus. I told her it was early yet; she should see how she does in the next week or so. But it's a problem for her because she's doing her doctorate, in her second year of the PhD program in English at Boston College, and her minor exam is scheduled for the first week in December. She has to stay enrolled or she loses her medical insurance. BC has been wonderfully accommodating, letting her follow an independent study course that exempts her from classes and teaching, but she does have to keep up with the work.

We're getting her an iPad and I've found some "brain-training" software for her -- a good friend of mine had chemo for ovarian cancer some years ago and kept her mind sharp with Nintendo and Brain Age, so I'm looking at equivalents. Does anyone have any other advice?

I think the riding is good, as it will keep her fit and get the oxygen to her brain; the kind of riding she does (dressage) can also be intellectually taxing (which is why our trainer despaired of me; I was going through menopause at the time). She sounds fine to me on the phone, but she's driven and a perfectionist, and I know how thick I felt with "static brain" during menopause, so I can imagine how she's feeling.

Any and all suggestions welcome. Thanks.

[Debbie L.]

Hi KirisMom,

There is a fair amount of research right now about "chemo brain" and conclusions run the gamut. Anywhere from "it's simply a normal reaction to the stress of a diagnosis and treatment and one recovers normal function quickly", to "permanent and ongoing damage is observable and measurable and we haven't found anything to do about it", to everything in between.

I participated in a chemobrain study at Stanford within the last year. They did baseline cognitive testing, including functional MRI studies (watching brain function while the subject is doing puzzles or quizzes, etc). One group then participated in brain exercises online while the other group did nothing different. Then a repeat of the cognitive testing/MRI to see if there's any difference.

I was in the control group but was invited to do the brain exercises after the study was completed. You can find the exercises at lumosity.com , where you can trial them for free. I am not sure that they have helped me but I like to think that they have, and most of them are fun. Some are a bit frustrating but I figure those are the ones I need the most.

The results of the study have not been reported yet, so stay tuned. I think it will turn out to be a mix of things, but I'm quite certain that for me personally, for whatever reason (cancer, chemo, AI), my ability to multi-task (working memory) changed significantly after treatment, and has remained altered these 9 years since. Basic memory is also an issue but that's easier to work around (writing things down, keeping lists, just admitting I don't remember). Oddly (to me), I do not feel that I'm less intelligent, nor less able to learn new things and reason things out. It's quite clearly limited to that multi-tasking. I'm realizing that I CAN do things that help with the problem, though -- like being rested, being emotionally and spiritually centered, being physically fit. All good things to strive for anyway.

I wouldn't worry about the cross-posting. But for those of us who don't keep up with bc.org, you'll have to tell us what you learn there about chemo brain, okay?

[karen z]

Hi. I teach at a university and am wondering why your daughter can not simply take directed readings (independent study) work until she is through with chemo, and perhaps longer. Must she take her minor exam in December, given the circumstances? If the main issue is staying enrolled/getting insurance (which is the most important issue right now) I would check out ALL options that her department will allow. It would seem like some exams could be delayed with documentation from her medical team.

[Mary L]

I have been off chemo for 3 years and I still have what I call "chemo fog." My short term memory is really bad. I can be talking to my Mom on the phone and I forget what I was talking about in the middle of the sentence. She laughs as she is 89 and very sharp. I guess I don't take after her. I have found that when I read books, I am not always looking for that word I can't remember. It is what it is and I just deal with it the best I can. I'm happy to be here even if sometimes I may not know why I am there. LOL. Mary L

[KirisMum]

Karen, that's exactly what she's doing - they've created an independent study for her at B.C. and she's exempt from classes and teaching. But her minor was scheduled for early November, right around the time she was diagnosed, and she really wants to get it out of the way.

It's for her own peace of mind that I'm asking. She's a dedicated scholar and her work has always been her salvation--during her lung collapse in 2005 she kept herself going by writing her Faulkner paper on her laptop. I'll do anything I can to help her hang onto her ability to work; it's a saving grace for her right now, along with her horses.

Boston College has been wonderful in its support. I'm extremely grateful for their understanding. It doesn't hurt that her supervisor is a woman who went through treatment for pretty much exactly the same kind of bc that Kiri has.

[krisvell]

Hi KirisMom,
I'm glad your daughter is living her life. Once I got over the shock of my dx, I picked myselful up and moved forward. I worked; I exercised; I lived. It really kept me positive. Truthfully, I didn't have any side effects.

Here's a novel thought; maybe your daughter won't get chemo brain and will tolerate her treatments well. I really hope that happens. It sounds like she's doing so now.

Also,with regard to Healthcare; a possible safety net. You should be able to put your daughter on your policy until she's 26;thanks to the new Healthcare Reform. Makes me mad that people have to worry about such things. It should be a fundamental human right. My son graduated from college this May and I was going to add him but he found a job in Boston.
Also, if you daughter would like some motherly company and talk to someone who's been down this path, I would be glad to meet her. It would give me a good excuse to visit my son; he lives in Brighton.
Sending positive thoughts and prayers for Kiris.

Kris.....

[KirisMum]

Thank you, Kris. That is such a sweet offer. :-) Kiri lives in Allston, at least for now; she's moving to a farm in Wayland in January. Truthfully, she kicked ME out, so not sure she thinks she needs any motherly company. LOL. The independence of 25-year-olds. But I sure do appreciate your company on this board!

She will be 26 in January so even if we could put her on our policy, it would only be for a few weeks. Fortunately she has excellent coverage with Boston College. She got her first bill--not that she was responsible for anything more than her copay, but I nearly fainted when she read me the amount. For the ONE DAY when she had the breast MRI, the mammogram, and the needle biopsies, $17,000!!!! Good God. I don't know what we would do if she didn't have good insurance. I agree, it's a crime that all our citizens aren't properly protected. But it's a complicated issue. I am Canadian and grew up with government healthcare and benefitted tremendously from it when I had a pituitary adenoma that required surgery in 1977 and 1979. I had the world expert surgeon in the transphenoidal approach in my own home town and it didn't cost me a cent. I would still be paying off my medical bills otherwise. OTOH, my Dad tore his rotator cuff in the late nineties and it took him a year to get an MRI, and that was with connections at a major Toronto hospital. By then it was way too late to do anything, his post-op meds got mixed up, there was some indication he might have suffered a mild stroke during surgery, and he basically went downhill from that time until he suffered a major stroke in 2005 and died 6 months later. He was in his seventies, with HBP, so it all could have happened anyway, but the delay in the MRI was very frustrating, and considering Kiri had an ultrasound at Brigham and Women's on a Tuesday and went in the following day for her MRI, mammo and biopsy, I am very grateful she was diagnosed and living in Boston.

[Trish]

Seems you are sounding better which is good. It is very hard being the parent of someone in this situation. I don't think the evidence about "brain training" is that clear cut for "Chemo Brain" or even for Alzheimer's for that matter. If she enjoys the exercises then it's fine but it wouldn't be good for her to feel pressured into doing them if her energy is limited. Chemo tends to be cumulative so gets more difficut as you go along. She may be best to concentrate on what makes her feel comfortable and that may be her PhD work and her horse riding. Remember chemo is a marathon not a sprint-for both of you! I hope your back is letting you spend some quality time with your horses.
Take care, Trish

[Sherryg683]

Now I have to admit that my brain was always going in many directions before chemo but for almost 2 years after, I was a mess. I couldn't focus, concentrate, had trouble finishing sentences and had trouble helping my daughter do 4th grade match. I am better now, back to normal. It was so frustrating and I wasn't trying to do anything challenging. Tell her to be kind to herself and realize that she's not to fault for this, it will pass...sherryg

[Karen Wheel]

Hi - I have pinged a friend who wrote this book on chemo brain.... she is on the Her2 site and think she will weigh in soon for some advise for you...

Idelle Davidson --
Co-author, YOUR BRAIN AFTER CHEMO: A PRACTICAL GUIDE TO LIFTING THE FOG AND GETTING BACK YOUR FOCUS (2009, Da Capo Lifelong Books)

Hope this helps ---

And from personal experience I would say make sure she is getting enought sleep --- I found I slept terrible after I started chemo and herceptin - and found help with 20 mg of Melatonin every night --- Pure Encapsulations is the brand that I use and I love it!

Karen

[KirisMum]

Thanks so much, Karen. I just bought that book! It looks great. I'm taking it to Kiri next week.

I'll ask her how she's sleeping when I talk to her next. We've used melatonin in the past with good results.

[Karen Wheel]

I think the key is the 20 mg! I have tried less and it doesn't work --- you can even go up to 40 mg from what my naturopath told me (from Oregon) ... did a phone consult with him last year. He sells the Pure Encapsulations at his clinic and they come in 20 mg pills so it is a no-brainer! ;-)

Tell her hi from the Horse crazy girl in Sardegna!
Karen

[imdavidson]

Hi KirisMum,

Karen Wheel just "pinged" me and asked me to come on (Hi Karen!). It sounds like you've already gotten some great advice here, especially the suggestions for your daughter to get some good quality sleep and exercise.

You may want to search out previous threads on "chemo brain" in this forum too as we've had many long discussions on this topic that might be helpful to you and your daughter. You'll find one of those threads here: http://her2support.org/vbulletin/sho...ht=chemo+brain.

I also have a blog devoted to "chemo brain" at www.YourBrainAfterChemo.blogspot.com where you'll find articles that can help. Use the search box to locate information on exercise, memory, information processing, word retrieval, multitasking, etc., or look through the index of topics.

I wasn't sure from your post if your daughter has cognitive issues or if she's just worried about it. It may help for you to know that although statistically up to about 80 percent of people going through chemo experience some amount of brain fog (ranging from mild to severe), it clears for most within one to two years following the end of treatment. And your daughter may not experience it at all.

In fact, it's possible that just the stress of dealing with her diagnosis while trying to excel in her graduate-level studies may be clouding her focus. I'm speaking only as a journalist here, but I can assure you that there is plenty of scientific evidence on how stress affects memory.

I'm five years out from treatment (and I had major chemo brain which has mostly lifted). But if I had known then what I know now after researching and writing the book with Dr. Silverman, I would have gone to a neuropsychologist for cognitive testing before I ever even had chemo (or next best thing, right after I started). This would have established a baseline so that I could be monitored over time. In fact, I believe that everyone going through treatment should have this benefit as part of their protocol.

But attention (along with good nutrition and all the other suggestions above) is key. If you don't attend, then you don't store the information in short term memory well enough to get it into long-term memory. People with "chemo brain" often have tremendous difficulty with attention: They just tune out. What really helps is to literally tell yourself to Stay Present. You can say it out loud or in your head. That worked for me while I was in chemo and still had to interview people for stories and follow the thread of our conversations.

People with brain fog also have problems with information processing. Everything takes longer. As one of the experts I interviewed for our book said to me, it's like your brain is this huge cabinet filled with files that are out of order. Everything is there, but it just takes longer to retrieve words and other data.

Your daughter needs to find a strategy that works best for her to make sure she attends to details. That might mean keeping lists or having someone in class take notes for her so that she doesn't have to divide her attention between active listening and writing, etc.

I hope this helps a little. Best of luck to you and your daughter.

Idelle

[Karen Wheel]

Thanks Idelle -
Great idea on the Stay present! I think I will start using that one for me and I'm not in grad school! Just in everyday stuff - it is a great montra!

:-)
Karen

[Carol.hope]

Hi Kiris Mum.
I was one of the x% (15% or more) who got long-term chemo brain and have had to learn a lot about recovering.

When I had chemo 5 years ago, my oncologist said they would bring me as close to death as possible without killing me. I could not imagine being able to do oral exams at that time. If your daughter is doing written exams, she may fare better. I'm just thinking she might need to be realistic. Chemo is not a walk in the park!

It's possible, though I'm not sure, that some of the long-term recovery approaches I took would help in the short term, while the chemo is still going in, which sounds like what she needs. I found a number of brain-supportive supplements were helpful in the long run, as well as exercise, diet, and various attitudinal approaches. For me, QUIET was really important.

Your daughter sounds ambitious. I imagine she'll make the best of it all. It must be hard for you to watch. My best to both of you.

Carol

[KirisMum]

Thanks, Carol. I would like to know more about the recovery approaches and the supplements. If you want to PM me, that's fine. Kiri's exam IS an oral one, scheduled for December 6. At this point she feels she can handle it okay (she had her second chemo this past Thursday). Her committee has been wonderful, telling her she can bring in notes to help her recall, normally not permitted, and that if she starts to feel ill, they can reschedule. Yes, she IS ambitious--how could you tell? LOL.

Currently she is on a Taxol infusion once a week and daily Lapatinib. I think that is probably milder than what you had to go through. Later on it will get worse. After her surgery (probably in April) she will be on AC for two to three months, infusions every 3 weeks. They've warned her the side-effects from that regimen will be more debilitating. Plus she will be having to deal with the expander from her surgery. Then she gets 6-8 weeks of radiation, then Herceptin every 3 weeks for a year, then Tamoxifen for 5 years. So it will be a long haul for her, but I anticipate the time from her surgery till the end of radiation (so, April through the summer) will be the worst, and that coincides with the college being off for the summer.

[NanaJoni]

Hi - Kiri is so lucky to have a wonderful mom who wants to help. I feel I have to chime in on the use of supplements - don't suggest or give your daughter any supplements without the approval of her oncologist. I worked with a clinical nutritionist/registered dietician during my chemo and now during my radiation. She instructed me more than once (when I questioned or wanted to try some supplements) to clear everything (including manicures/pedicures/hair color/supplements) with my oncologist. Supplements are unregulated by the FDA and can be widely different compounds in what might seem to be the same thing (name or label). Her oncologist should and must approve anything she takes. Chemo is a very delicate balance of drugs/chemicals and can be affected by the slightest things. What worked for me might be very harmful for Kiri - so encourage her to take all these concerns to her medical team. My cancer center has "patient navigators" who coordinate care between the different doctors and specialties that are involved with cancer treatment as well as giving invaluable personal support. They are very knowledgable about the resources that are available for each individual person. You may want to investigate to see if your daughter's center has a program like this. Good luck and will keep you in my prayers.

[Carol.hope]

Kiri's Mom,
I agree with Joni. Especially during chemo treatment, it's important to have someone advising you who has knowledge and experience with chemo as well as supplements. I had a Naturopath who had worked in a cancer center, supporting patients as they went through chemo. If you want, I can give you her contacts, and she may (not sure) be able to consult by phone. It would be better, of course, to find someone locally, who can see Kiri. She/he will of course want to see all blood test results, etc.

It sounds like Kiri has a good arrangement with her committe. So she can go for it, but back off if she needs to. That sounds like it would encourage her, without putting her in a bind if she's needing more rest or unable to meet (her) expectations. Life should always be that way, shouldn't it?!

Is PM personal email? I have a list of 20 Recommendations for Healing from Chemo Brain (long-term chemo brain), which I could send you (tomorrow - too tired tonight!). Or I could post them here. Many of them will be relevant for chemo "fog" - the mental fuzziness that comes during treatment.

I have been reading recently that many patients can avoid having anthracyclines (the A of A/C), which are hard on the heart. There may be a specific reason Kiri needs anthracylines, but if this topic has not yet been discussed with the oncologist, it might be worth bringing it up. 5 years ago A/C was standard. I am still dealing with heart problems.

My best to you.
Carol

[Carol.hope]

Kiri's mum,
I am finally able to figure out some things on the computer (5 years after chemo) and just figured out, I think, how to attach my list of 20 Recommendations for Recovering From Chemo Brain. Hopefully they will be attached to this message...

These were developed to address long-term chemo brain, but perhaps you will find something useful here.

Best wishes.
Carol

[imdavidson]

These are great, Carol! I just ordered YOUR book.

Idelle