Monday, November 3, 2008

triple negative in all senses

I've been reading like mad in preparation for my meeting with the onc today. Very depressing stuff and lots of conflicting articles: ones that say Adriamycin (pure red poison to the heart-the one I really want to avoid-one blogger refers to it as the red devil) is useless against TNBC and ones that say it is the standard treatment. But some new articles are especially upsetting: how TNBC has an extremely high recurrence rate-now it isn't clear what they mean by recurrence-another breast tumor-not so bad-or a metastisis (very bad). If the former is true, why don't they recommend a mastectomy from the start? But one article said that unlike other BCs, TNBC tend to go to the brain and if that happens, you have 2.9 months until death. Chemo does nada against brain mets in preventing or treating. "Regular" BC goes first to the bones, then lungs then liver. Now I used to think that bone mets were the worse-can be very painful and this is what Elizabeth Edwards has. Hers is a single spot and it will eventually kill her but maybe not for years and years.
My blog buddy "Sunny" is finished with chemo (altho the side effects aren't finished with her) but her onc recommended keeping her port in (which needs to be flushed regularly)because of the 'high' recurrence rate of TNBC. This eroded her hope (at least temporarily-she seems to be doing much better today). My brother-in-law had a brain cancer, which usually has a high recurrence rate but they removed his port (a big deal as he is on coumadin and any surgical procedure is infinitely more complicated.)

I got up early to deal with Naomi. She was supposed to make a collage of her pictures for the yearbook that was due last week. I kept nagging and nagging so she finally did it late last night and it is awful. I will redo it myself and submit it on the way to UM and she won't find out until May that I've changed it. By then I could be dead when she has her big fit.

Anyway, in the Free Press today there was a story of a 38 year old mom who discovered her TNBC while nursing this July. She was told she has only a 30% chance of recovery, which sounds real low. I immediately went to her online journal ( to get details. Bigger tumor (5.2 cm) and in all 6 nodes that they had sampled. Does NOT have BRAC1 as suspected so her little girls won't have that hanging over them. The family has a small chain of coffee shops in Fort Wayne Indiana that aren't doing well given the economy so someone started an e-mail campaign for people to patronize their shops so financial ruin would not be so much of a factor while dealing with TNBC.

She (Kim) is dealing with this with unbelievably good humor. They have to sell their house and she was painting while doing chemo . Not a good idea to be shedding around fresh paint.
Jan came over yesterday with sweaters for me from resale shops. She is replacing her entire wardrobe as the demolition has left potentially toxic dust on all her belongs. Between rainstorms, we were able to go for an hour long walk. We then watched the 2nd season of "Weeds" that Karen has left for me.

1 comment:

kim said...

I found your blog on Renee's site. I, too, am a triple negative breast cancer warrior battling the disease since July 2008 while breastfeeding my youngest daughter. There is so much to learn about the disease in such a short amount of time. I find it comforting to connect with other triple negative breast cancer warriors. If you want to check out my blog it is a I would love to stay in touch & overcome this dreadful disease. Lots of Love, Kim


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