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Old 07-18-2015, 09:10 AM   #9
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AlaskaAngel's Avatar
Join Date: Sep 2005
Location: Alaska
Posts: 2,017
Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

Claudia, thank you for being among those to provide better treatment! In 2002 when I was dx'd I knew nothing about the trastuzumab trials but asked my onc if I could participate in clinical trials. There was only one I think that I would have qualified for and I didn't know about it, and he wasn't responsive, so I never had trastuzumab. I too remain without recurrence.

Suzan, the loss of muscle tissue + the permanent struggles with slower metabolism and weight gain have made my knees and ankles weaker too. I was offered steroid shots but turned them down. For a while (in trying to cope with the sudden onset of weight gain that so many younger medical providers think can just be addressed with "diet and exercise") I was jumping rope for 30 minutes a day, but my ankles and knees could not take it. I am doing PT for that, with a small local private PT who is very good, and it is helping bit by bit. I will never be able to jump rope like that again, but the PT is strengthening what muscle I have and it is reducing the knee pain.

Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
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