[chicagoetc]

Carol,

You're a gem and a blessing. Everything else written in this thread has been helpful but you sound closest to my current/recent past experiences. I had read about MTBI about three months ago and thought the symptoms were almost exactly what was listed. [I guess MTBI is not a fully accepted diagnosis?] I had no overt head trauma but think the Taxol may have had an affect. Per your recommendation, I've ordered "Brainlash".

For others, here is a symptom list for MTBI (Minor Traumatic Brain Injury). Not sure offhand where I found it on the web. I put an asterisk * for symptoms applicable for me:

Common Symptoms Associated With MTBI

• Difficulty figuring out how to do new things. *
• Being disorganized in your approach to problems. *
• Having difficulty completing activities in a reasonable amount of time. *
• Being slow to learn new things. *
• Becoming easily frustrated, irritable, and having outbursts of anger or rage. *
• Problems with word finding (remembering the right word to say). *
• Hypersensitivity to light or sound.
• Problems with concentration and being easily distracted. *
• Spacing out and losing your train of thought. *
• Problems with short-term memory. *
• Becoming more forgetful. *
• Increased frequency of headaches. *
• Increased impulsiveness, impatience, risk taking, rudeness, or social impropriety. *
• Fatigue
• Fibromyalgia type symptoms: mental fogginess, difficulties getting restorative sleep, diverse pain.
• Problems with physical balance, dizziness, tremor, clumsiness, or incontinence. *
• Having difficulty in being able to be flexible in changing plans or switching from one activity to another. *
• Problems reading letters and words. * (more with spelling..thank God for spelling checkers)
• Difficulty in understanding what others are saying. *
• Confusion in telling right from left, or with puzzles.
• Getting lost easily. *
• Being fidgety and having difficulty remaining seated.
• Going from one activity to another without finishing tasks or projects. *
• Difficulty with speech, language, or math skills. *
• Seizures.
• Sensory problems with: vision, hearing, taste, smell, sensation. *

Neuropsych testing (6-8 hour battery of tests) indicated the following problem area/results:

- mental control difficulties (e.g. ability to count backwards or say the alphabet)
- poor cognitive efficiency (slow processing speeds)
- severe impairment to cognitive flexibility
- difficult with sustained attention
- severe impairment of semantic fluency (generating lists of words in a catogory...e.g. words starting with a particular letter)
- impaired immediate recall
- difficulties with non-verbal problem solving

The testing measuring psychiatric, psychopathology ruled out any significant psychiatric symptoms/disorders (some mild depression) that would cause these problems. The overall summary was: "Her cognitive functioning reflected some slowed processing, inattention, and decreased flexibility. Her inattention also appeared to affect her language abilities, new learning but not retention, and reasoning." Diagnosis: Cognitive Disorder NOS. Primary problem area: Primarily attention (not memory as an underlying problem but generally as a result of inattention). Recommended treatment included medication (I'm on a lower dose of Namenda which seems to help some) as well as Cognitive Remediation.

The testing obviously did not cover symptoms such as increased clumsiness,
sensory problems (taste, vision, sensation), not understanding what others are saying, language/math difficulties, and quite a few other MTBI symptoms listed above.

I stopped working fulltime (worked halftime) until this month. In December I moved to 3/4 time. January I move back to fulltime. I think I can do it but if I can't the disability coverage would be based on fulltime employment rather than parttime. It's stressful though some of what I'm doing now is engaging and makes the time go fast.

The Speech Therapist I saw (for cognitive remediation) worked with me re quite a few different ways to reorganize how I do/remember/process things. It helps. I need to do more of what she recommended and plan to practice. I do things at work in ways I never did before (with many adaptations). I asked her whether the Namenda or the speech/cognitive therapy was responsible for the improvement in functioning. She said it doesn't matter as long as things have gotten better.

All this to say I am more hopeful, less frustrated, grieving less over loss of functionality. I feel more confident (there is some memory /attention improvement along with lots of strategies to compensate). If it all goes away later, great. If it stays (in part or in full), I'll go with it. I think I can work (it keeps me out of trouble) but, if I can't, then I can't.

Thanks...

Melanie

PS: I would guess there are quite a few others here who can relate to the above. Someday maybe there will be even more study focused on longer term symptoms post chemo (now that many of us are living longer).

PPS: The nausea does seem to be improving. I'm not sure due to what (maybe due to Herceptin ending per posts earlier in the thread) ...will need to try stopping different remedies I've been using to test which one's are or are not needed.