[rhondalea]

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.