Oct 19, 2012 09:53PM FeelingtheMagic wrote:
Cider, Skittle, Onlyoneleft, StayinHappy... Sorry to hear of your diagnoses. Glad you have found this thread.. where we all learn so much from each other, and especially from Voraciousreader. VR, I actually yelped "YES!" out loud when I read you will have the opportunity to meet with Britta Weigelt and Jorge Reis-Filho, because I know how valuable that is.. for all of us! Thank you again, VR.
Rarities... certainly something I'm noticing in this whole realm of cancers. My diagnosis of mucinous with HER2+ just makes our already 'rare' a little more rare. StayinHappy, I noted in your diagnosis in your signature that you are also HER2+? Perhaps we can keep in touch, as you are the first I've found with mucinous and her2, and sharing our treatment recommendations can keep us both informed. Also in the rare, my daughter was diagnosed with also a .1% rare form of ovarian cancer 2. 5 years ago. (Doing fabulous and 29 weeks pregnant!!!!) And just recently, my other daughter's mother-in-law (and good friend of mine) diagnosed with what initially seemed a small IDC.. turned out to be a 'continuous leaking' small IDC that has metasized in kidney and bones .. apparently the 'leaky' nature of it, also rare.
Point of story: Yes, it is bizarre there being so much rare going on, but I've learned this: Self advocacy and the ability to research are so key in all of these journeys. What I've learned here, or linked from here to learn, have been key in decisions made about my treatments.
And an update: Had my last chemo last week, (chemo was a result of having HER2+ and started last June) currently in the 'wow, am I tired' stage.. and by end of next week, I get to be on the uphill ... getting energy back, hair back, brain back, and get active again. Hurray!! I do continue for another 11 treatments (every 3 weeks) of herceptin, and next week, apparently the onc wants to talk about what and whens of starting hormonal treatments. Which has me back doing research again so I'll be prepared with all the questions, and ha.. likely research!... when I see him.
Blessings to all of you!