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