Cancer ideas exchange boards?
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| Sat, 09-01-2007 - 12:12am |
Howdeeee! I'm Soonee, reporting in from the DFW area of Texas. I'm not at all new to iVillage, but am new to this board. You can normally find me on Dating as a Single Parent or Single Mothers and Dating. But, I haven't been dating much lately.....
I've been divorced 7 years, with two kids DS(13) and DD(10). Two years ago, my Ex was diagnosed with Stage IV (metastasized) colon cancer, and he's been staying with us ever since. Well, someone has to take care of him, and I guess I'm the best he's got. He currently has cancer in one lung, upper and lower instestines, a substantial amount in his liver, and of course lymph.
He's on a new, experimental Chemo cocktail because the traditional treatment didn't work. It contains a EGFR (Epidermal growth factor receptor) inhibitor which is widely known to cause a nasty, pustular rash. Within the first week he got a classic – and very uncomfortable – case. It presents as pustules (overnight!) over chest, back, neck, scalp and face, at an approximately distribution of 4-6 bumps or pustules per inch (wow!), with inflammation, stinging and itching.
OTC, we’ve tried benadryl (oral and topical), ibuprofen (as anti-inflammatory) and an oatmeal product from a respected company that was supposed to soothe and reduce itching. Rx, he’s on the recommended dose of doxycycline, plus we’ve tried an antibiotic gel his Onco gave him. If this is helping, I’d hate to see what he’d look like if it weren’t.
It’s not acne vulgaris, it’s more like follicular inflammation, so nothing in my normal bag of tricks would work.
The good news is that a substantial pustular rash like his is associated with a greater success rate in stopping growth. The bad news is that he really can’t tolerate it.
My Ex's EGFR (panitumumab) is new and experimental, but they’ve been using EGFRs for so long you’d think someone would have come up with something!
I’d appreciate any ideas of cancer support boards; something where patients exchange "what works" ideas. Google is failing me; all I’m getting is technical literature – which was interesting, but I’m all beefed up on that now. :-)
Thanks!
Soonee

Hi Soonee
Welcome to the board.
Thanks, Philly.
Hi
I did find this for you on iVillage.
Hi Soonee...
Sorry to hear about your situation and your ex's diagnosis. I am a colon cancer survivor of 4 years. I was diagnosed with Stage 3 at the age of 41. During my treatments I found two websites that were very good. Please feel free to give them a try...
Association of Cancer Online Resources (ACOR) acor.org this is an email discussion group that you can post questions to, research the archieves and communicate via real time email or receive a digest version which incorporates all the days discussions in 1 or 2 emails per day.
Colon Cancer Alliance (CCA)ccalliance.org they have a chat and message board and also a Buddy Program where you and/or your ex would be paired with a person who has "been there"
I hope this helps you find some answers and support along your journey.
Take Care... Annie7B
Try the Colon Club Forum - search for what your are looking for as I am sure it has already been discussed. If you don't find anything...post the question.
I too am a stage IV cc patient - mets to liver. I am still on my first line of treatement - FOLFOX and avastin...
Wendy
Hi Soonee,