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Medical Forum / Diseases and Disorders / Breast Cancer / July 2004(IBC resources) Kaye! Help!
Hi, Kaye - One of my best friends' sister was dx with IBC today. The closest breast center to us is the University of Michigan's center in Ann Arbor - I strongly recommended they get a consult there and they have an appointment there tomorrow. Things are happening fast - they just got the biopsy results today. I'm in pretty desperate need of some IBC resources - my buddy Alexandra still runs the IBC mail list, I think - but any support groups you can think of would be greatly appreciated. Anyone else knowing of IBC resources is welcome to chime in also, please. hugs to all - allan Allan, here are a few from a google search. --Was looking specifically for the group with “bestiary” in their title or address, but couldn’t find it. I can’t remember the name of the group other than it was IBC support. ---They REALLY knew their stuff! Sorry I can’t be more specific would strongly recommend them. Archives of IBC@LISTSERV.ACOR.ORG Inflammatory Breast Cancer Support Group Note:You must be subscribed to this list in order to view the archives. ... http://listserv.acor.org/archives/ibc.html # ACOR Mailing Lists Archives view in new window - ... # http://www.ibcsupport.org/resources.html # http://www.cancerlynx.com/ibc.html # Breast Cancer Care : Coping with inflammatory breast cancer view in new window - ... may feel alone, particularly as inflammatory breast cancer is a ... on individual support or support groups in your area call the helpline at Breast Cancer Care on ... http://www.breastcancercare.org.uk/Breastcancer/Diagnosis/Inflammatorybrea stcancer/Copingwithinflammatorybreastcancer # Inflammation (Inflammatory) articles, support groups, and ... view in new window - ... (Breast Cancer Forum); Xray question related to nodules and granuloma (Respiratory Disorders Forum). Support Groups: Canadian PID (Pelvic Inflammatory Disease ... http://www.medhelp.org/HealthTopics/Inflammation.html # Online support view in new window - ... BRCA Breast Cancer Online Support Group BC-SUPPORTERS Partners of ... Speakers CLUB-METS-BC Metastatic Breast Cancer IBC Inflammatory Breast Cancer BMT-TALK ... http://bcresources.med.unc.edu/onlinespt.htm # Inflammatory Breast Cancer,Inflammatory Breast Cancer,Inflammatory ... view in new window - ... IBC has been diagnosed in very young women, and many patient members of an international web-based support group for Inflammatory Breast Cancer at the IBC ... http://www.icomm.ca/geneinfo/infbrstcncr.html # WILLOW - Links to other breast cancer web sites view in new window - ... Inflammatory Breast Cancer (Canada) http://www.ibcsupport.org/. ... Pregnant With Cancer Support Group www.pregnantwithcancer.org/. Quebec Breast Health Network (QBHN ... http://www.willow.org/rsc2.asp # Breast Cancer Links and Resources view in new window - ... that offers hope and support to cancer ... complete source and guide to cancer information compiled by Alexandra Andrews, a survivor of Inflammatory Breast Cancer. ... http://www.gift-of-life.com/bclinks.htm Good luck and prayers to your friend and his wife. Lady8 Allan, so sorry to hear about your sister's friend. As scarey as it can be, the outlook for ibc has greatly improved. I will send some info re latest, most effective treatments. As far as treatment centers, I think U of Michigan is one of the better ones and think, that I just read that they are in the forefront of latest treatments. The best place for support is Alexandra's list. If you don't have the address email me privately and I will send it. Sorry that I couldn't answer you sooner, but we were out of the house by 7:00--had 3 different medical appt's--P.T., pulmonologist, and dermatologist. (I can't recall off-hand if I wrote about the weird skin lesions I had--at least I can say 'had.'). The dermatologist was stumbed and quite concerned. Leave it to me to come down with something else weird. And, after those 3 appt's I went to work and stayed there until almost 8:30 tonight. This is after going to bed at 4:45 a.m. and getting up before 6:30. I took a few 20 min. power naps to get me through the day. I should try and get to bed early--yeah right--it's almost 10:00 n;-) Anyway, I have a few other addresses I could send--email me 'cause I am using a different computer and don't have your email address--oh wait, see the above is different so will try that one. Hope Deborah is doing well. Take care and my best thoughts and prayers. {{{Hugs}}} Allan, in addition to the list, here are some more resources. IBC is becoming more widely known and unfortunately more frequent. Immediate treatment is critical and usually begins with chemotherapy. http://www.winabc.org/about/Index.htm http://www.google.co.uk/search?hl=en&ie=ISO-8859-1&q=%22inflammatory+breas t+cancer%22+&btnG=Search&meta= http://www.google.co.uk/search?hl=en&ie=ISO-8859-1&q=%22inflammatory+breas t+cancer%22+support+dermatology&btnG=Search&meta= http://www.google.co.uk/search?hl=en&ie=ISO-8859-1&q=%22inflammatory+breas t+cancer%22+support+dermatology&btnG=Search&meta= Thanks, guys - we'll know a lot more in a couple days. hugs - allan  Signaturewe don't see things as they are, we see them as we are. -- Anais Nin Saw the path report last night and it confirmed IBC. Carol's shiny new oncologist can't see her for a first appointment until the 14th of the month and no one's real comfortable with that. If it weren't IBC a two-week delay would be okay, but we're researching other options. I misspoke a bit on the University of Michigan thing - they haven't been there yet but have learned they're willing to do a consult and have treatments administered by Carol's new oncologist that she hasn't met yet. Many concerns these days - apparently her job depends on her working full time and not many people can do that through AC so we'll see what happens there. My friend Susan had already found about half the websites y'all recommended and asked me to pass on her thanks for the references. She's a pretty good researcher. Next, I have to go out to Tim's site and print off the chemo basket for them - time to start collecting that stuff, I guess. hugs to all - allan Signaturewe don't see things as they are, we see them as we are. -- Anais Nin allan grossman <wizard@no_spam.pointbeing.com> wrote in message > Many concerns these days - apparently her job depends on her working > full time and not many people can do that through AC so we'll see what > happens there. Does she qualify for the family leave act ? She can always pay for cobra but that is so expensive!!! Hoping for the best outcomes! >Does she qualify for the family leave act ? She can always pay for >cobra but that is so expensive!!! >Hoping for the best outcomes! Unfortunately she works for a company with less than 50 employees. FMLA doesn't apply :-( Thanks, Alex ;-) Signaturewe don't see things as they are, we see them as we are. -- Anais Nin |
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