Cognitive Rehabilitation
 

The site going down was a blessing for me, because I realized just how much I rely on its existence. All my attempts to post since Denise died have ended in failure, but I did my best to keep up with what was going on. (So even though some of you don't know me, I've met you, and I think of you and hope the best for you.)

I still have a hard time writing. I can manage Facebook because shares don't take thought, but everything else that has anything to do with stringing words together to make sentences--oral or written--has not gone well. Not at all.

Two paragraphs, and I've still not gotten to the point. That's one of many problems I'm facing--I can't keep my train of thought on its track, so I babble.

So...

I had my first cognitive rehab session yesterday. The purpose was intake, so there wasn't a whole lot of therapy going on, but boy, was it an eye-opener.

All those brain games? They probably make chemobrain worse. In fact, nearly everything I did to try to make chemobrain better had the effect of making it worse.

It turns out that what an injured brain needs is the same thing any other injured body part needs--rest. Time to heal. The example the neuropsychologist gave me was a runner with a leg injury--even if she was running 10 miles a day before the injury, an attempt at 5 miles after the injury will only delay healing. Baby steps. It's all about baby steps.

I've been instructed that I've been pushing myself to hard, and I am to take breaks.

-Reading is not a break (and in fact, she told me I should probably only read for 15 minutes before I take a break).

-Playing a game of solitaire is not a break.

-I'm not sure about housework, but cooking probably isn't a break.

-I don't watch TV, but if I did...you guessed it: it doesn't qualify as a break.

-Posting here and reading here (or anywhere else online) is not a break.

-In other words, nearly everything I consider relaxing...isn't. At least, not for my injured brain.

She told me to "think primitive." Firelight, not electricity. I can go for a walk. I can sit on the porch and drink a cup of tea. Well, okay, electricity isn't totally out, because I can listen to music. I suppose I can daydream, but I can't sit and let my thoughts grind about the things I need to do. If I could remember how to knit, it might be okay, but the relearning process would not count as a break. Grooming the kitties is acceptable, but I'm absolutely certain that sorting my piles in the basement is out. P.S. Running errands today didn't feel like a break because the wheels were turning in my brain the entire time.

A long time ago, I signed up for notifications from calm.com so that I would know when their Android app was released. Then it was released, and I ignored it. Yesterday, I downloaded the app to my phone, and I added the site to the task bar on my computer. I've used it today, and I think it, too, may qualify as a break. It features new age-y (very soothing) music and a serene scene to watch, unless you use the guided meditation feature. For that, you close your eyes and listen and relax. I managed two minutes the first time, but I've since worked up to five at a time. Seems to help, because I felt a lot better afterward.

Googling for clues about resting the brain after an injury, I came upon the tidbit that blinking rests the brain. Here's a link:

http://articles.latimes.com/2012/dec...-rest-20121227

Today, I have practiced blinking. It's quite a lot of work to remember and then do it, but it does help me feel more clear-headed. Long ago, I remember reading (and then noticing) that part of the problem with computers is that people blink less than normal when looking at the screen. Remembering to blink helps the brain and the eyes.

Now the bad news. Most insurance seems not to pay for cognitive rehab. The program I'm enrolled in offers charity care, so I would guess that other facilities have similar ways of covering care for those who are not covered by insurance. (I am, but they thought I wasn't, which is how I learned the option was available.) It seems downright sinful to me that this service isn't routinely offered to individuals with cognitive deficits on account of cancer, because just one session has made a huge difference for me.

About that difference... I have a lot of doctors. All but one wanted--desperately--for me to be depressed, so that they might write a prescription and send me on my way. I kept saying, "I've been been depressed. I know what depression feels like. This isn't depression." For some reason, though, the medical establishment has a default setting: "If we don't know how to fix it, it must be in your head." To tell the truth, I started to fear that I would become depressed because of how dismissively I was treated and because there were so many really stupid roadblocks in the way of my getting the appropriate care.

Well, they can all bite me. In a single session with this neuropsychologist, it became clear that everything I was experiencing is so common to brain injury as to be pathetically pedestrian. As I sat there with my jaw dropping, she told me what was happening to me--it was as if she'd been watching me go about my daily life for months on end rather than just meeting me minutes earlier. All those doctors I mentioned above? They're about to be on the wrong end of an earful.

I encourage anyone who is having any cognitive problems at all to have a neuropsychological evaluation. If nothing else, the validation is life-altering. The coping tools offered afterward the diagnosis are just the icing on the cake.

P.S. In case I don't get my sig fixed right away, I am no longer on Aricept. It helped a little in the beginning--which may only have been a placebo effect--and then it seemed to make everything worse.

Re: Cognitive Rehabilitation
 

Rhondalea - so good to hear from you again and also glad you decided to take time off from'resting' and write such an eloquent post. I am going to go and download calm app it sounds perfect for me - I find it hard to just 'be'!! So thanks for that - I will let you know how I go!

Re: Cognitive Rehabilitation
 

How are you, Jenny?

I hope Calm helps you. My other tactic has been to obtain a Pomodoro timer. Rather than 25 minutes, I have it set to 15. I'm hopeful that it will remind me to take my breaks more regularly. Now I just need a reminder to blink (but I'm getting pretty good at that, anyway).

I hope to keep this thread updated with whatever techniques the neuropsychologist teaches me. (The above were not her idea, and although they seem useful, if she nixes them, I'll mention it.)

Re: Cognitive Rehabilitation
 

THANKS, Rhonda! So glad to know you have taken further steps to work on your cognitive difficulties. I knew I needed rest. I just *could not* make myself do things for quite a while. Felt like my head was in a cave.

I will be back to download the calm app. There are always moments we can use that, even if not on a regular basis.

Re: Cognitive Rehabilitation
 

Thank you SO much for sharing that! What a pleasure when we find someone who understands You must have felt such relief and validation
I remember being in a breast cancer group therapy session and I mentioned chemo brain. The facilitator said it did not exist But there I sat, someone who could barely drive myself to the sessions because I couldn't remember how to get there. Or back home I felt so disrespected
I found that a mindful meditation program helped. It came with CDs too. But it was SO difficult to just BE and stop the monkeys swing from branches in my befuddled brain
I'm much improved with time
Keep the faith

Re: Cognitive Rehabilitation
 

Good post Rhondalea. I find I am struggling less and less with cognitive issues after 7 years. High levels of exercise while listening to music was helpful in the first years after chemo.

I didn't purposely rest my brain. Still the emotional upset and frustration if I feel I can't do something I could before is likely the worst for my memory.

Thank heavens the cognitive issues are being addressed more and more.

You are one lucky lady to find a knowledgeable neuropsychologist to work with. I love the information you shared.

Re: Cognitive Rehabilitation
 

I am chiming in here for 2 reasons:

1. My DH had a brain aneurysm 9 months before I was diagnosed with BC. We were lucky - he had what are called "sentinel bleeds" (warnings) - so after 3 weeks of about 4 episodes a CT angiogram found that aneurysm. He had a coiling procedure (they stuff the aneurysm with platinum coils shot up through the groin to the brain) and it's been nearly 9 years and he is fine. But it took a lot of time to heal - the neurosurgeon told us it would take about a year or more for him to be "okay", that rest is the number one thing the brain needs. He also had cognitive therapy once a week for many months (supplied by our provincial government health care).

2. I found I was not myself until I finished my 5 years of Tamoxifen and Femara. Physically, emotionally, mentally - I realized about 6 months after I was off the Femara that I was "me" again. More energy, more focused etc. I think the effects of those anti-hormonal drugs are not given enough credo and often are "sloughed off" - take the drugs, ladies, and suck it up. Be glad you're alive. Of course we're glad alive, but guess what, it's not perfect, and there are issues!

all the best
caya

Re: Cognitive Rehabilitation
 

Hello Rhonda. Cognitive issues make us feel so miserable. (And doctors should listen to their patients and not think depression at first). Are you still taking Tamoxifen or another anti hormonal?
A few years back I started to have cognitive problems and it got to a point where I could hear my husband talking to me but I did not understand the meaning of his words. I would just start crying and ask him to stop talking. It was really frightening. I was wondering what was happening and thinking of a brain tumor. I called my onc and he said "stop Aromasin right away". I had been taking it for almost a year.
All my cognitive issues then disappeared. He put me on Faslodex after a break.
Of course I do not know if your "chemo brain" is linked to your initial treatment or to an antihormonal or something else. It is just to let you know it can happen because Estrogen is important for our brain.
I hope things will improve with time and rest. I am happy you were able to write about it and share your feelings with us. Stay strong.

Re: Cognitive Rehabilitation (warning, really long)
 

Re: Cognitive Rehabilitation
 

The cognitive problems I had fell into 3 categories:

1. When I was treated in 2002 and asked about chemobrain, my onc said "in 25-30 years of treating patients, I can count the number of patients on one hand who were totally disabled mentally by treatment". Because I could not get any scientific answer to my question, on my own dime I had a standard mental testing done at the time as a baseline. For cost reasons I have not had testing repeated. But my point here is, why hadn't it been similarly investigated medically BEFORE exposing patients to such treatment in the adjuvant setting? If I could think of it with my puny brain, why hadn't it been done?

2. I had some problems during treatment and in the "recovery" period afterward.

3. I too had to give up working 10 years after completing treatment when such things as multitasking and executive function were involved.

Hopeful posted this article link recently, and although my ability to find an earlier article she posted about the impacts on work doesn't seem to be functional enough for me to find that article, maybe she will see this and post it for us again:

http://her2support.org/vbulletin/showthread.php?t=62037

Re: Cognitive Rehabilitation
 

Talk about forgetfulness.... I meant to mention that I also wonder about an experience I had during chemo. I was up early and doing some paperwork the day after receiving my third dose of CAF and support steroids (plus anti-anxiety med), and was looking at the computer screen, and suddenly I could not see. Everything was black for both eyes, no matter how I tried straining to see. It lasted a few minutes. During that time I felt a cold wave start at the back of my head that slowly washed upward under the scalp, ending with my forehead. When it ended, my vision came back normal.

When I asked my providers about it, they asked if it had only happened once, and when I said yes they gave me a professional smile and changed the subject. No clinical note was ever made containing that information I provided to them.

A.A.

Re: Cognitive Rehabilitation
 

Debbie - Your post is not whiny, it shows a great example of how you were affected by cancer treatment.

Alaska Angel - that is truly freaky about your vision loss. Even more freaky is how it came back with a cold wave.

Mikha - I had something similar happen with an overdose of benadryl. I could see my doctor's lips moving, but I could not hear any words. They would blip in and out, like a short circuit. I stopped the benadryl and it took about 10 days to get back to functioning. I think it affected my acetylcholine.

Rhondalea - good timing on this thread. Lots of good information for thought.

Re: Cognitive Rehabilitation
 

AA, is this what you were looking for?

http://www.news-medical.net/news/201...ars-later.aspx

This also seems to be on point with the thread:

http://her2support.org/vbulletin/showthread.php?t=60877

Hopeful

Re: Cognitive Rehabilitation
 

Hi Hopeful! Yes, that is the article -- thanks for reposting it here.

My job required mental speed, particularly spontaneous immediate use of very precise descriptive language. I now struggle far too long with the right concept in mind but no way to come up with the words for it until much later. As a self-employed person especially, the premature loss of my job skills has had a major impact on my life.

As part of the qualification process for a clinical trial in 2006 I had a brain MRI, which showed a small spot "normal for aging". I have not had a repeat brain MRI since then but with the continuing loss of facility, written clinical documentation of the episode I had during chemo seems possibly relevant to me as a patient although obviously it was not meaningful to my caregivers.

I also wonder what could have been the outcome for me at the time of the incident had I been driving or operating other machinery and suddenly lost my vision, even briefly, maybe in the middle of changing lanes in heavy traffic, or not being able to see a child on a bike just ahead? Without clinical documentation of such incidents as mine, it would be very difficult for anyone who has the same problem but at a more critical moment to handle the outcome. Who would believe them?

Re: Cognitive Rehabilitation
 

Write a book. About this topic. You are more then qualified and could make a difference.

If not a book, how about articles for popular women's magazines.

AA, you could drive the change we need for cognitive treatment before and during treatment. The rest of us could give input.

I'm also paying financially the cost of being a cancer survivor in the workforce. I need to try and do more with a career, but I am just struggling with this. I'm focusing on adding a 2nd job, but not are as challenging as before cancer.

Re: Cognitive Rehabilitation
 

Hi ladies thank you all so much for sharing your experiences. It still amazes me that cognitive changes chemo are not just ignored but pretty much dismissed by the majority of the medical community. I was always so grateful to be alive, after my " dire" prognosis I felt a little brain damage was not biggie. After over 9 years I still walk into a room and can't for the life of me remember why. It usually comes to me after I stop and concentrate. I forget family names, when speaking I struggle for words. I researched chemo brain and found a great article, which I managed to send
to my DH. Stored it away safely, and of course, have no idea where it is!
Anyway, I am now faced with an earlier retirement because I am fully aware that my overall ability is impaired; I work as an executive. I do fear that earlier onset of senile dementia is possible. Overall I remain thankful for my restored health. I do think however the medical community should not only acknowledge that this adverse event of chemo, but also push for studies that will ultimately truly scientifically validate us and our symptoms.

Re: Cognitive Rehabilitation
 

Thanks, Liz - I learn a lot from your posts. Given enough time I can still write, but I do have much more difficulty now with very concentrated analytical scientific information and being able to retain the exact terminology well enough to be able to discuss it clearly. The value of any insight I have is in large part due to the extended length of time I've had after diagnosis to examine the information everyone provides here, which I think is true for some others like DLaxague as well.

We need carefully documented clinical trials that follow patients from diagnosis through the years.

Re: Cognitive Rehabilitation
 

Thanks, I try to post things that help us all learn, even me.

Stop thinking like a scientist, think like a cancer survivor, and a cancer care advocate.

Yes, we need these clinical trials. But we won't get them if we don't work together to popularize the concept.

You can write material that bridges to both the layman, such as us Her2 folks and the general public, and to those with higher levels of scientific education and experience.

Give this some thought. I think that folks like us on the board can make a difference. But not if we don't educate others.

Re: Cognitive Rehabilitation
 

Liz,

Like Dlaxague, I just lost a long post after struggling to compose it (*sigh). I know better, and that before posting a long one I should have "copied it", just in case it disappears. I'll try again.

At time of diagnosis and treatment, we are most acutely conscious of the experience and our questions about it, but much of the time we are not sure of our grasp of what is "normal" and what is not.

A major problem is that we tend to believe that our caregivers already know about any difficulties involved and "would have TOLD us" about them, as part of their obligation to us". WE give THEM the benefit of the doubt, and fail to push them to do that part of their job.

There are some here who do speak out about problems that so many suffer with, whether by posting in forums or in more public ways. There are some who actively raise a discussion with their caregivers about the problems they experience. But too many still just sit back, make excuses, and want someone else to do it. Some, like me, find that their caretakers don't even bother to document their concerns when they do talk about them. Some read what others have to say here, but don't bother to post. They rationalize and postpone. They "don't want to seem ungrateful" for the care that they do receive.

Here are some who are speaking out:

Our member, Idelle:

http://www.amazon.com/Your-Brain-Aft...rds=chemobrain

There is now another book cooperatively written also by a physician plus female cowriter,

http://www.amazon.com/ChemoBrain-The...rds=chemobrain


Here is the miserably short list that came up of clinical trials listed on clinicaltrials.gov that are being done, using the quest "breast" and "chemobrain". Probably using "cognitive dysfunction" might bring up even more:

1Active, not recruiting Can Exercise Improve Cancer Associated Cognitive Dysfunction? Condition: Breast CancerIntervention: Behavioral: Exercise

2 Completed Computer-Based Training in Patients With Post-Chemotherapy Cognitive Impairment Conditions: Breast Cancer; Cognitive Symptoms; Memory DisordersIntervention: Device: Computer-based Cognitive Training

3 Recruiting A Multi-modality Imaging Assessment of Chemobrain Condition: CancerIntervention: Procedure: Imaging assessments


Are there any members here who are participants in these trials?

Can anyone who works in the medical field who is familiar with the problems we have help by listing some relevant training sessions specifically designed for training medical providers about our problems, perhaps even some training sessions that actually include patient participation?

A.A.

Re: Cognitive Rehabilitation
 

I read Ms. Davidson's book, but I don't remember much of it, sigh.
I've put the Dr's chemo brain on my Amazon wish list.

Yes, exercise significantly improved my cognitive function, for god's sake we don't need an expensive clinical trial to determine that.

Testing before and after chemo should be standard.

Sorry AA, but I think God is calling you to address this. At least to get the ball rolling.

Personally I would have been thrilled to have testing before and as follow up after treatment. My confidence is low. I'm not sure what I can do, but I think it is much more then I am doing now. I just need to reframe my outlook and use the talents I have.

Think about it, but don't be annoyed at me for pointing out your great talents, lol.

Re: Cognitive Rehabilitation
 

Liz, making progress takes getting more of us off our posteriors, voicing our concerns together and alone, but voicing them firmly and openly, to be taken seriously. This thread is a very good start, but it is just a start. I'd like to see more people make the effort to get involved, even if only to protect the next generation. Maybe they don't care that much.

One that still amazes me is how silent so many have been in taking the bull by its horns and raising cain about the loss of sexuality with treatment, as if it was "just part of the deal". At present, the medical system is encouraging 5 women to undertake treatment that usually affects most of them in such an intimate way, in order for just 1 to obtain any benefit. It is important to note that those who work in the medical profession AND are breast cancer patients seem to suffer in silence as well.

One other process that I believe might provide helpful information would be to have hormonal testing and/or inflammation testing once a year as a standard for every annual physical exam, we might just discover patterns that occur for those who later develop cancer.

A.A.

Re: Cognitive Rehabilitation
 

Thanks you Rhondalea for starting this post and AA for the prompt. This has been on my mind a lot lately and I have thought about posting or starting a thread and it felt like a lot of energy just to formulate all my thoughts.
I have definitely lost a lot of executive functions that are critical to doing my job effectively. I did some searching regarding chemo brain and found the Alzheimer’s meds being used, which Rhondalea you mention having used. I also found use for medications for ADHA have been shown to be helpful as well. Had a long discussion with my Onc about this, she is a BC survivor as well, and also experienced loss of executive function that was regained over a couple of years. For me we decided to tackle the issue of sleep, I have not had more than 6 hours of sleep per night, and sometimes less than 3 since starting Tamoxifen. So we decided to deal with the hot flashes to help improve sleep and see if that helps. I am taking Effexor and it is helping but still early to tell. Feeling in a bit of a fog today. Some days I feel able to focus and can accomplish a lot. Other days it is truly a struggle to complete any work.
On a very concerning note, which I think many of us worry about is how much is permanent how much can I regain, and what is the risk for continued loss. A friend had total brain fog from Tamoxifen, unable to converse and became deeply depressed, just wanted to sleep. The Tamoxifen was stopped and the brain fog cleared totally within a few days. She was switched to Raloxifene, and did OK. In addition to someone else who had chemo brain and is now in full blown dementia.

Re: Cognitive Rehabilitation
 

I have a post, but my head isn't fit for it. In the meantime, my neuropsychologist gave me a link today, and for the readers among us, it's a gift.

http://tbiguide.com/

I'll be back with more as soon as my headache goes away, although I do want to mention before I forget that everyone with brain issues should probably have their ferritin checked. The range at my lab is 15-150, but anything below 50 leaves you prey to such ills as depression, fogginess, and--my personal favorite--restless legs syndrome.

P.S. My own ferritin was 14 as of last Monday. In 2008, it was 8 (because of hypothyroidism). With treatment, it hit 34. In 2010, it was 22. During chemo, it was 37 (false rise from inflammation). At the time, I was so anemic, I had to have a flippin' transfusion, for cryin' out loud. You'd think it would have been a clue to someone, anyone. But with all (but one) of my doctors trying to push antidepressants on me, none thought to write a lab order for ferritin.

Jerks.

Re: Cognitive Rehabilitation
 

Addendum:

I made a PDF of the TBI Survival Guide, and I put it in my Dropbox. If you would rather download it than read it online, and you don't have Microsoft Word, you can use this instead:

https://www.dropbox.com/s/5g97u6wd99...Guide.pdf?dl=0

Re: Cognitive Rehabilitation
 

Dropbox - great idea!

Will do when I have time, as now I spend huge amount with mother's issues and care.

Re: Cognitive Rehabilitation
 

Wow! I've been reading and getting so choked up - just to be validated is fantastic, so thanks very much for starting this thread.

I remember (18) years ago, feeling the chemo fog, and being told there is no such thing. Of course, now "chemo-brain" is recognized and being addressed.

My frustration is also in the executive function arena.

I am so visual at how I approach my work, and the ability to hold a vision while designing, and make changes in my mind and then physical changes to my design and then provide & coordinate the support documentation is pretty much out of the question without great cost/STRESS to me.

I avoid so many tasks that are simple and stupid - BUT - they are so taxing and I know without question that my brain is not functioning as it used to. AND NO, TO ALL MY LOVELY FRIENDS AND FAMILY, IT IS NOT "JUST" GETTING OLDER. *SIGH*

I cannot open my mail and process - it's too overwhelming, so thankfully I have help with all financials.

I cannot wrap a gift, make a card, take the whole thing to UPS and mail it. Too hard. Any time multi-layering is involved, I feel hopelessly overwhelmed and I just "can't". Which, as you know, is not the same as "won't".

I've been on continuous treatment for 7 plus years. I'm sure that has something to do with my brain fatigue, and my brain never recovering.

So, it's good to be validated.

Not sure there is a big "remedy" for me - except to continue to really pick and choose my battles, and consider finding ways to have less and less responsibilities that are taxing and time sucking.

Very great thread...thanks!

-SoCalGal

Re: Cognitive Rehabilitation
 

Rhondalea
I just wanted to say that I really miss Denise too. :(. I have struggled to post here also. Xxxxx

Re: Cognitive Rehabilitation
 

Hi everyone,

I read all the posts as we went along, and I had lots of responses in my head, but they never made it to my fingers and thence, the keyboard. Let me just say that I hate knowing we're all in the same boat.

Here is my update:

For now, I am not receiving neurocognitive rehabilitation therapy. My therapist recommended speech therapy for the babbling, and I will start that soon. I will also enroll in a mindfulness meditation program run by one of her colleagues. There was something of a to-do over the latter, because my insurance company wanted to classify it under mental health, and the hospital wanted it classified under medical. Self-pay would have cost me $2600. At the local meditation center, the same program is $600. My therapist's colleague at the Center also has a private practice, and in that practice, she runs the same program for $240. I'm grateful.

But why, you ask, am I no longer having the rehab sessions? That requires a digression.

My endo decided that perhaps sleep issues were causing my fatigue, and he sent me for a sleep study. I have very mild obstructive apnea. The recommendation was to lose weight and to have my ferritin tested. The weight gain was caused by my inability to get off the couch and my failure to keep up with my food diary, as well as a lack of energy and desire to cook, such that I was eating randomly. Below range ferritin caused restless legs syndrome, which was uncomfortable in the evening while I was awake, but worse, kept me jerking around at night. All the apnea episodes occurred while my body movements were uncontrolled.

So, I started taking iron. One problem on the way to resolution. My skin problems have cleared up, my legs are less crazy, my sleep is better, my fatigue has decreased. My endo then decided that since I'm already on Metformin (well, maybe, if I didn't get the placebo, but he didn't want me to leave the study), he would prescribe Qsymia.

Let me break here to say that I had wanted to try a stimulant all along. From a genetic perspective, Provigil is useless to me. Neither can I take Ritalin. But my own research indicated that Focalin might help me. The trouble was that not one of my doctors was willing to prescribe it or anything like it, even though they were all eager to get me on an antidepressant. (Effexor would have worked, actually, but not at the dose that they would have prescribed.) This is utter bs, given that it falls within the NCCN guidelines for the treatment of chemobrain, but I won't waste more space complaining about doctors.

So, Qsymia. It's a combination of phentermine 3.75mg (increasing to 7.5mg) and topiramate 23mg (increasing to 46mg). The lower dose is for titration but I will ask my endo to let me go back to it because it was all I needed. I lost six pounds in the first two weeks, and within 24 hours of taking the first dose...

You should have seen my basement. You couldn't walk on the floor without stepping on something--mostly scattered, unfiled paper. Now the whole floor is clear. I again do my daily chores daily. The laundry is done. The bed is made. Clean is the word of the day. Organization proceeds apace.

The topiramate component is a problem. I have some side effects, and I don't like it. But all it took was 3.75 mg of phentermine to get me moving again. That's one-tenth the dose of an Adipex. I probably could have taken a child's dose of Focalin and gotten results.

My neuropsychologist had requested a predetermination from the insurance company for an additional 12 sessions. She put that on hold because she says I'll get no benefit from therapy right now. I just don't need it--the pill did it all. She also gave me a referral to a psychiatrist who is likely to prescribe a more appropriate stimulant to replace it. I have never taken a diet pill to lose weight, and I don't need one now, so I'll be happy to stop taking Qsymia. I just couldn't resist the idea of trying the phentermine for its effect on chemobrain.

A cautionary word here. I have tried other chemical cures. When no one would prescribe a stimulant, the endo prescribed Aricept. At first it seemed to help. I thought I had the miracle cure. After a month, I was just too addled to know it wasn't helping at all. It turns out that women who have had breast cancer chemo have higher than normal choline levels in our brains, so an acetylcholinesterase inhibitor is probably not beneficial. Oops.

Then the dreadful neurologist I saw gave me a prescription for Namenda (works well with Aricept). It caused terrible leg pain, and it did not help my mind even a little bit.

So I do not recommend either one to anyone. But Provigil is an option as are Ritalin and Focalin and several others, and they have been tried as treatments for chemobrain with varying success.

As for neurocognitive rehabilitation, most of the techniques I would have learned in therapy are contained in the book that I linked to in an earlier post. I have to say that it was very difficult for me because the idea of scheduling my time is not something I have ever done. (I'm excellent at scheduling other people's time, however.) You might even say that I'm constitutionally resistant to it, and now that I'm not working outside the home, it's even less palatable to me. Still, to build structure, it's a good idea to make a list of what you need to accomplish and to plan your activities through the week, along with breaks. It's a great tool, if you can make use of it. I just wasn't very good at it, and it's hard to say whether it's because I was distracted or because it just doesn't suit my personality very well.

So this hasn't worked out quite the way I planned. I'd hoped to give everyone a rundown on how this therapy works and what it accomplishes, but I took a shortcut.

The stimulant drugs do have side effects, but most of them are mild. If my experience is any indication, the dose required is very small. These doctors gave us deadly drugs and radiation in the hope of killing our cancers, so it's hard to fathom that they won't give us small doses of far less dangerous drugs to get our lives back. My neuropsychologist said something about that though. She was talking about neurosurgeons, but she said oncologists seem to be on the same page. "You're alive. You can walk. You can talk. Go out and live your life." They have the idea that "not dead" = "right as rain." And although it is true that not dead is better than the alternative, it's as if quality of life isn't even part of their calculus.

Re: Cognitive Rehabilitation
 

That is quite a long post, and one of the best. It shares what each one of us goes through after cancer treatment.

I have been one of those who run opposite of others. So my experience with choline is opposite as well. I cannot tolerate Benadryl since cancer treatment - it puts me into symptom of anticholinergic syndrome which can be fatal.

I supplement with Soy Lecithin when my heart rate becomes elevated and my memory issues increase. I have other symptoms when I accidentally take something that affects choline. It is very distressing to me.

I still deal with issues of fatigue. Exercise helps quite a bit. But once you slip into that tired funk . . . well you can relate.

I have a huge pile of papers to file surrounding my filing cabinet in the living room. My office is piles of unfinished clutter. I have dozens of projects started . . . forgotten and unfinished.

So today I am baking a turkey for my family and am not even the least bit organized. I think I shall try your written schedule and see if I can get myself organized.

I think your post is very helpful.

Re: Cognitive Rehabilitation
 

I edited my post. Thanks for the nudge that made the light go on. Aricept is an acetylcholinesterase inhibitor not an anti-cholinesterase inhibitor. I still have these moments, and one of the side effects of topiramate is worsened memory. (I can handle that if I can function, but sometimes the results are weird.)

I can't tolerate benedryl, period. :) Ever.

But I think that it's possible to have higher levels of choline in the brain after chemo without having higher levels of choline in the body. That's been demonstrated with a lot of chemicals that act as neurotransmitters but are also present elsewhere, generally. As choline levels rise, serotonin levels fall. I believe there may be other consequences, but I don't have them to hand.

Exercise didn't help me at all. If I did manage to get myself up and active, it put me down for the count for at least a day or two or more afterward. It was terrible. Now, I'm able to take a daily walk again without a problem, so maybe I'll be able to go back to the gym soon.

The written schedule seems to be the tool of choice. She printed out daily pages from Outlook for me. I resisted because I have Outlook, and I'd rather do everything on the computer, but there's something to be said for a notebook that you can scribble in. You just have to be careful to allow yourself enough time and enough breaks.

Re: Cognitive Rehabilitation
 

http://her2support.org/vbulletin/sho...ghlight=idelle

Walking (physical exercise - can be just walking around the house while doing chores. I would swing my arms and bend my knees every once a while to maximize the benefit), reading, and writing have helped me tremendously regain / maintain my cognitive ability.

The neuropsychologist who had administered the 17 batteries to test my cognitive ability pulled my husband aside and talked to him privately for a good half hour. From then on, hubby no longer wonders if I am doing certain things on purpose to upset him... He now understands the woman he's been living with for over 26 years not only is chronically ill, but also has a very injured brain that make her do strange things sometimes.

I think chemo brain is totally reversible (after several years with active, conscious efforts). My problem with the short-term memory region is due to the craniotomy and GKRS 24 and 13 years ago respectively. It was worse after chemo, but has been back to 'normal' (my standard of normal :) for several years now. O, and the easy-fatigue ability. That is not something that will go away no matter what I do - as I do have a huge empty space in the center of my brain.

Keep working on it. I remember the time when reading newspaper was a difficult 'task'. And now I'm online all day reading everything under the sun.

Re: Cognitive Rehabilitation
 

You took a hard hit, Jackie, and it's amazing how well you've done. Cause for hope for everyone.

On the subject of husbands, I am lucky. My husband is the one of the strangest men you'll ever meet--a touch (okay, more than a touch) of Asperger's, remarkable intellect, bizarre sense of humor. He's been great about the whole thing--even the three times I flooded the house.

At one point, I gave handed him a concise, written explanation of the problem (a professionally written article), so he is well aware that I'm not doing it on purpose. It never occurred to me to take him to a doctor's appointment, but when I related to him the trouble I'd had with the neurologist, he said, "You should have let me talk to him." It was the first time I realized I could use him as an advocate if I need one. The next doctor who gives me trouble is in for it. :)

If moving around the house counts as activity, then I was more active than I thought. The doctors certainly didn't count it as such, but I went (and still go) up and down the stairs frequently, and if you think that cleaning eight litter boxes every day isn't work...well, except for the two double size ones, they're sifting pans, so there's a lot of lifting involved. And I suppose that hauling all those cans and bags of cat food might be akin to bursts of weight training. I don't use a cart in any store. I have handheld shopping baskets that I carry around, and when I can no longer lug them, it's time for the register. It just didn't feel like, yanno, exercise.

Reading was the real problem. I really pushed on that because reading and research is the end all and be all for me. The neuropsychologist said that all the effort I expended delayed the healing of my brain. She said that 15 minutes at a time might even be too much. I found myself reading the same things over and over and not comprehending any of it. If I read a freaking novel, I'd get to the end and start over again because I missed so much the first time through. Even then, I wasn't retaining more than a small percentage of the content. I never finished all the courses I'd signed up for. I stopped working on the family genealogy project. I stopped doing genetics research. It all just went down the tubes because I couldn't understand any of it.

Worse, I couldn't write at all--I'd come to this group and write entire posts, and when I'd review the draft, it would be utter nonsense. I did that a lot. I made tons of posts on Facebook, and no one noticed that they were all shares, and my own contribution was, at the most, one or two words. Familiar words that I've used all my life were suddenly foreign. I had to look up words that I've used hundreds, even thousands of times in the past. Sometimes, I knew exactly what word I needed, and it just wouldn't come to me.

So now I have a chemical helper, and it's great, but it's still a relief to hear that there is a light at the end of the tunnel from someone who got hit with a double whammy. Thank you.

Re: Cognitive Rehabilitation
 

I'm reminded that I owe an update.

The Qsymia continues to work, although the normal dose progression did not work so well for me. I'm splitting the higher dose capsules so that I continue to take what is considered the titrating dose. I'm of two minds about telling the endo I did it, although I did tell my onocologist. I've also adjusted somewhat to the topirimate, although I'd like to not take it.

I've reached a certain level of function that I can't get past. The big projects aren't started, but I'm keeping up with the small stuff. So, okay, I'm not quite as adjusted to the topirimate as I said. It's as if it fights the stimulant every step of the way. Still, I'm doing much better than I was.

I am certain that the extra iron has helped. Certainly, it has cleared up my skin issues, and my RLS is nearly gone, so I know my ferritin must be increasing. That may be part of the reason my brain is less fogged. I encourage anyone who is having symptoms of fatigue and chemobrain to have their ferritin tested. (Admittedly, my oncologist is having a fit--he wants me to have an endoscopy. He claims that there is no connection between my thyroid issues and ferritin, even bearing in mind the severe anemia I experienced during chemo. He thinks something else is going on. But I just found an old paper (1985, but it has not been superseded as far as I can tell) that seems to say he's wrong, and neither my old gastroenterologist nor my former endo agree with him, anyway. Apparently, they read the old study, which he did not. But he is young, and they were not. Moreover, my dietary habits are such that I probably have very poor iron absorption from my food--too much coffee and tea, not enough meat, too much dairy.)

I've got a call into the neuropsychiatrist, but he's apparently a loose cannon, so I may have to wait a while. I'm thinking of looking for someone else, but I don't know where to start--which has been the problem all along.

I started speech therapy. The therapist is a treasure--young and infectiously enthusiastic. I'll post more on the progress with that after a few sessions. This should help not only in the area of a "cease babble," but in better organizing what's in my head.

Re: Cognitive Rehabilitation
 

Today, an update, but it's really an assignment from my speech therapist. :) I am to tell you why I go to speech therapy, what I am doing in speech therapy, and how it is working for me.

Unfortunately for me, it comes in two parts. I'm to outline it, and then I'm to write it. I've never been able to outline, so I'll try a simple list.

1. Purpose of speech therapy (for me)
2. Overview of assignments so far
3. Accomplishments in real life
4. Continuing goals

I babble. I babble because I lose my train of thought. I babble because I can't find the right word, so I keep talking until it comes to me. I babble when I get angry, although that only happens in the doctor's office or in letters to the doctor, when I'm not being heard. I am not concise, and I am not able to get my point across because it's usually gone by the time I'm done talking.

In addition, my ability to process and comprehend information has slowed. I try to read and listen as quickly as before, but I lose large chunks of content, because my brain cannot keep up.

The assignments I've received so far have focused on training me to be concise in speech. I have managed to complete all but one of these assignments, but with great difficulty. In the past, synopsizing a series of commands would not have been a chore, but I labored over each example. Subsequently, I was totally stymied by the task of dictating a book synopsis.

When groping for a thought or a word, I have been told to slow down. This is, for me, counterintuitive, but it seems to work when I manage to do it. It's a technique that will require practice, because it's so unnatural for me.

On the up side, I'm learning to be conscious of the moments I lapse into editorializing. In conversation, I am watchful of my speech, and I cut myself off when I start to use semi-colons and parentheticals. I received a telephone call the other day that terminated far more quickly than usual because I stayed on topic and did not digress.

I have a lot of work to do. Understanding how to be concise, as I once was, and having the discipline to do it makes me breathless. I am also uncertain how the lag in information processing and comprehension can be addressed, although I suspect the answer lies in my own adjustment to a slower speed. I am hopeful, however, that the small accomplishments thus far are an indicator of improvements to come.

Re: Cognitive Rehabilitation
 

P.S. I wrote that several days ago. Then I reviewed it with my therapist, Alyson, for conciseness. Then I forgot about it. :)

Since then, I have managed to synopsize a short story. It is an evil little story by a nasty little gnome (Harlan Ellison) and it has given me nightmares for nearly 40 years, but I found it easy to do.

In other news, the neuropsychologist called me today, and mindfulness meditation starts next week.

I still bumble and stumble, and I feel deficient, but at least there's some hope I'll be able to compensate somewhat.

Re: Cognitive Rehabilitation
 

I'm glad to hear you are working away at it, bit by bit, Rhondalea, and that you are learning to recognize progress and give yourself credit for it. The information from your efforts is interesting. I wish we knew why it happens more to some of us than to others.

A.A.

Re: Cognitive Rehabilitation
 

Hi AA,

As you might have guessed, I'm very interested in why some of us are more impacted. I've done research about this topic, but true to form, I have not organized it.

The APOE4 (Alzheimer's) allele is a prime suspect--I'm heterozygous, fwiw--but even if it's a big piece of the puzzle, it's probably not the only one.

If I can get my brain in sufficiently in gear to organize my HDD, I'll post some links, but it might take a while.

Re: Cognitive Rehabilitation
 

Rhondalea let me add my thanks to you for starting this thread. Fortunately I have doctors who recognize chemobrain. Unfortunately they don't want to do any tests unless it hangs on for a while. In the meantime I've had to return to work somewhat impaired. The medical team at work is aware of the issue and has indicated they will go to bat for me, should there be "performance issue" talks about me but I didn't share that information with my boss because I met him for the first time when I returned to work last month. Can't you just hear that conversation? "Hi, I'm your new admin. I look forward to working with you. Oh, and by the way I'm having some cognitive issues due to my cancer treatment so you shouldn't get upset if I really munk up stuff I do for you, you know, assuming I remember you asked me to do it, k? Thanks. Great to meet you by the way."

I've taken a couple of notes from this though and will discuss with my PCP when I see her on Tuesday and then again with my oncologist when I see her next month. They may want to wait for a while before they do any cognitive testing but I had some bloodwork done recently and my B12 levels were very high (I do take a supplement and everyone thinks that's the culprit - myself included - but I'm letting all my doctors know because I'd rather follow up now and there be no issue than just make assumptions and let it go when there could be a problem that requires fast action.) and the oncologist's nurse sent me an email saying "Increased vitamin B12 levels can lead to several metabolic disorders that primarily affect cognitive functions leading to dementia." Makes me think that's a good reason to follow up sooner rather than later.

Re: Cognitive Rehabilitation
 

Lucy -
Interesting info about B-12 levels! I have been supplementing with B-6 for a back/leg nerve problem. Hope there is no such side effect from B-6.

As the conversation develops on this forum regarding cognitive impairment, the complexity of each individual stands out as clearly as the problems of how to treat what kind of tumor.

There just is no simple answer, and that is as "simple" as I can put it! Would be nice to have some kind of check list to go down while we look for and try to compensate for the aftereffects of our treatments.

Re: Cognitive Rehabilitation
 

A few months have passed, but chemo brain is stealing my ability to perform at work. My primary care physician recommended a neurological consult. He can't see me until 3/26! Rhondalea, you mentioned having a neuropscych eval. Any recommendations on finding a chemo brain specialist in NC? I live in Greenville, NC but can travel to Raleigh, Durham, Chapel Hill.
Thanks!
Loren