Thursday, March 12, 2009

Positives about negatives

The following is a site of a former journalism professor who has survived triple negative breast cancer and has compiled lots of articles that are helpful for possibly surviving this disease.( Included are articles on nutrition's role in survival. Some interesting facts gleaned from her site: the percentage of hormone positive tumors has increased quite a bit in the last 20 years from 64% to 72%. Could be due to obesity (linked to estrogen positive tumors and HRT use-also linked to estrogen positive tumors). You would think men's breast cancer (1% of BC patients are men) would be estrogen negative but 90% of their tumors are estrogen positive. Strange.

I did go to the UM support group last night but there was only one other patient. I think that guided imagery speaker last month scared everyone else away. The social worker always leads the group and Dr. Henry's nurse-practioner was there to answer medical questions. She's my neighbor. The new participant was about my age and had 3 estrogen positive tumors, not all in the same breast. Each tumor was individually tested and one of them, through that Oncotype program was found to be super aggressive so chemo was recommended-my regimen. I was surprised by that as I read that Taxol wasn't all that useful for estrogen positive ladies. She finished her chemo at the end of December and now, 13 weeks later has a quarter inch of peach fuzz for hair. I do hope mine grows faster than that!!! She didn't lose her eyebrows or eyelashes until her last Taxol. Damn. Hope I get to keep mine though Anne, the nurse present, thinks I have a good chance of keeping them. Her eyebrows have already grown back and her eyelashes are starting to reappear. As her tumors were all estrogen dependent, she's on an aromatase inhibitor to block any estrogen her body produces. She has lots of side effects from that drug so I guess I should be grateful that I don't need to be on one.

One of the goals of the support group is to provide feedback for the cancer treatment program in general. I expressed my concern about having poorly trained techs administering the Neulasta. In the patient education program, we are taught that the fatty areas of the belly or thigh are the best places for the injection but the techs are trained only to do it in the arm-the most painful site. The other patient said she wanted her injection in her thigh and they said that if so, she would have to wait a long time for a nurse to do it instead. Also, when I finished chemo the other day, I was given a flyer for a recovery program that occurred 3 weeks ago. That wasn't much help.

I did call Marilyn (the triple negative in my neighborhood) yesterday to see if she wanted to go to the support group. She did have her last Taxol as scheduled and finally is recovering but felt that she needed her energy to work on stuff she's neglected for the past 16 weeks. She is in my LiveStrong program so we'll do that together.

Sunny is finally settling in and has started to eat. We have to keep her food separate from Spud's. She won't touch his food but she's very possessive of her food even if she isn't eating it and will snap at him if he even sniffs it. I walked her for 45 minutes and had her chase a tennis ball in the tennis courts (no mud there) until she started to slow down. She likes to drop the ball 10 feet away from me but I won't pick it up unless it's at my feet. I keep saying 'closer' and she'll push it closer in one foot increments. Either that is part of the game or she hasn't caught on that I want it at my feet on the first try. My neighbor Elaine remarked how obedient and mellow she was for a shepherd but I said only because I was finally able to exhaust her. My myalgia hasn't started yet though it probably will sometime today. I will try to take a long walk with Sunny before it hits. She lies at my feet now as I type this and follows me from room to room if I get up. Spud is limited to one floor as he can't do stairs.


Patricia Prijatel said...

Sue: Thanks so much for highlighting my site. I am almost at my three-year anniversary--a big date for triple-negative patients. My blog is a labor of love, an attempt to give other women hope. My best to you as you fight the good fight. Let me know if I can do anything to help. Remember: The great majority of women survive to live full lives! Pat (

krisa said...

I enjoy reading your blog; you express so well my thoughts about the never ending story called cancer diagnosis. :)


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