Does this belong here?

[AlaskaAngel]

Melanie,

I've been thinking about one other possibility for you, since I think somewhere you mentioned that you have had the dizziness or vertigo-like feelings for a long time (i.e., they are not necessarily related to cancer treatment).

You might consider trying to find a physical therapist who specifically has been trained to work on vertigo and dizziness problems. Although I was skeptical that PT would be helpful, it worked big-time for me for the steady dizziness/vertigo problems I was having several years ago. The problem I had was due to having had surgery for bc on the left side and a sentinel node biopsy, on top of a previous left shoulder injury that was turning into "frozen shoulder". Basically my neck muscles were tightening up because my left shoulder was so weak, and things were squishing my nerves at the neck. This suggestion is a long shot, because you also have had extensive evaluation by neurologists, but may be worth considering.

AlaskaAngel

[Bill]

Hi Melanie! Your mention of ginger ale reminded me that one of our chemo. room friends recomended 'ginger drops', like lemon drops to suck on during chemo. to help with nausea. She said most health food stores carried them, but we never tried them. It seemed like a great idea.

[Bold]

I am sure that you resolved your problem. But I wanted you to know that it sound like labrinthitis. This is an innr ear disorder. I had it one and everytime I opened my eyes the world turned to the left.

[Carol.hope]

Hi Melanie. By now you know you are not alone.

I have been dealing with these issues for three years (since starting Taxol), except for the nausea. 1-1/2 years ago my MD diagnosed a CHI, closed head injury, or Mild Brain Injury (MBI) secondary to chemotherapy. With all the secondary drugs and all the other "side effects" (I had a lot), who knows what actually caused this. Two weeks ago I found a book called Brainlash, by a PhD psychologist who had an MBI after a rollerblading fall. She describes all my symptoms and difficulties, along with how to deal with them. Finally, someone who understands! I've basically figured out the same things over the past two years, but now I feel less guilty and wimpy.

I think the oncologists need to be trained in this stuff so they don't treat us like we're making it up.

In short, as my MD said, brains take a long time to heal. You need LOTS of rest. Working full time, pushing yourself, may not be the best thing for healing. Look up brainlash.com and see what you think. Good luck! - Carol

PS I have not been on this site for a while, in part because my brain gets so fried with everyday living. I thought I'd check in to see if there's anything new about brains and chemo...

[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.

[Carol.hope]

Hi Melanie. Glad to be in touch.

It's interesting to me that two of my worse symptoms are two of the few you didn't check. I have extreme sensitivity to sound, even 2-1/2 years after stopping the drugs. Can't be in restaurants, stores, parties, concerts, can't even listen to myself play the piano (although my noise-canceling headphones help). If two people are talking (one in the background), or there is background music, my brain can't understand what either one is saying. Can't be around kids, or barking dogs. I had to move to a house with electric baseboard heat (couldn't stand the sound of fans), etc.

I read that 80% of the brain's energy goes to filtering. So I guess it doesn't have enough energy to filter out background noises. It gets overwhelmed when it uses up its reserves, and then it can't operate properly.

My other main symptom is fatigue, which I think comes from the brain having to work so hard just to do regular things. I have had most of the others, too, but some of them have improved. I do Sudoku puzzles to exercise some part of my brain, and also to shut it off from its frazzle state. I can read again, if the book is not too complicated or poetic. Yeah! Forget movies or t.v. though.

I just read another article saying chemo-brain is a myth. HA! I'm sure those researchers don't have it!

I think I will call the author of that book (Brainlash)and see if she would be interested in following up with stories from cancer survivors. Maybe if we document it and give it a new name, we can get some help and guidance. Now with more and more people getting all these drugs with Stage I cancer, I think more people will benefit if we speak up.

Are others willing to tell their stories? This is such a great site for gathering and sharing info, in addition to finding compassion.

Thanks so much to Christine, Joe and the other leaders!

[chicagoetc]

Carol,

Actually I have trouble filtering sounds etc but not as bad as you. The thing is I always have had it to some extent. I'm ok around sounds but get two or more voices or a voice and music or the television and I'm good for nothing, don't know what anyone is saying, getting extremely frustrated very fast. My vestibular system has been out of whack (spell check says "wack" is not a word but "whack" is) probably all my life...it just took decades for someone to diagnose it. More recent problems have included consistent problems with balance, visual field shifting, increased nausea etc. Energy is an issue to but my oncologist prescribed exercise (walking) from day one. Working and attending to numerous medical/cancer issues has kept virtually all my free time going for the past year and a half. A full day with no down time is hard. Though working halftime was nice while I did.

And, I agree, those saying that "brain fog" or "chemo brain" is not real are missing something important. Hoping like you that others will say more about how this has affected them...

Melanie

[StephN]

Hi -
Carol - Sorry to hear you had such a hard time lately! To the point where you had to move!

Here is another thread where we discussed cognitive problems. I am sure you can search and find more.

http://her2support.org/vbulletin/sho...nitive+problem

We have also discussed use of Ritulin here in the past.

I would say I still have bouts of some "confusion" and get easily distracted at times. Being less fatigued shows a definite improvement over earlier this year. I had "noises" like a motor humming in my head and now that is much better. It was to the point that it would wake me out of my sleep.

[jones7676]

I cannot offer you any medical advice, I just wanted you to know that I care about you and I hope they figure out a solution for you real soon and that next year proves to be better for you.