Saturday, June 6, 2009

Breakfast Club Meeting One

We started a group. I hate to say support group because I don't like most support groups. Too depressing and unrelated to me, but we are doing something a little hipper! It's at my house (or whoever would like to host), there is good healthy (and unhealthy) food, some flowers on the table and great discussion. I felt really glad I did this. We started at 10am and before you knew it it was 1:30! We obviously needed to talk and really clicked with one another.
This month Amy who is in chemo currently and going to be doing a mastectomy and rebuild showed up having never met any of us! I was put in contact with her through our mutual plastic surgeon. She is still making the BRCA positive decision of whether to have ovaries and uterus out or just ovaries. Thank you for coming with your gentle nature, bandanna and chemo fog!
Tami is also mid chemo and in wig looking fabulous! She is waiting to hear here genetic testing results and struggling with the order of reconstruction. Should you do radiation then reconstruction or reconstruction then radiation???? We love her tenacity and search for answers. I know she will struggle and struggle and then do what her heart tells her is right for her. We shared our stories of reconstruction and will send our good energy or prayers her way.
Margaret an original Breakfast Club girl came with her great positive relaxed energy! She told her story of being diagnosed and treated for colon cancer then having surgery with complications that landed her in the hospital for 9 weeks only to find out it was probably ovarian cancer and then being treated for ovarian cancer. She is a living miracle right now currently beating an aggressive cancer and in remission.
Elizabeth came with her free spirit feeling more and more confident and further and further away from the cancer that once enveloped every thought. Her hair is back with a vengeance and growing strong. She talked to us about eating to boost your immune system and we decided we could talk about it at several meetings to come as it is a large topic.
Elena came with her bubbly spirit and advocated for second opinions and lots of questions. she shared her story of reconstruction with radiation and the faith that her radiated skin will hold out in expansion for her and if not she will move from there. She also had a lot of information on healthy eating.
Mary was there in spirit and we missed her, but she had to work and we're glad because she is a single mom and needs her Saturday hours!! See you next time dear.
I was there as the picture of what not to do in the eating area. We established that I eat red meat, monkey bread, dairy and drink alcohol and am going to continue to do so, but I also found a way to have sex after menopause using Premarin cream so I trump all the good food in the world! I may die young but I'll be full and sexed!!!!! I do also advocate weight training and low body fat!

Some interesting information to share:
**There is currently work on an after chemo drug for triple negative girls. Tami I think you said you had a website about it so please hit comment below and fill us in.

**Elena told us about Zometa. It was given to older patients to prevent bone loss and it was consequently discovered it reduced recurrence of breast cancer as well. She is getting it as an infusion. It was thought that there may also be a pill form. Oncologists are starting to give it on a regular basis to younger patients now. Elena please hit comment and give us all the facts you have on it please.

**Amy told us about a new radiation machine that more directly targets tumors while sparing healthy tissue. She mentioned a cream to put on radiated skin called Biofine. We think that's how it is spelled and it is recommended.

**Elena recommended the book Crazy Sexy Cancer. She also has lots of info on nutrition. She recommends minimizing dairy, sugar and fat from your diet and staying as plant based as you can. She takes several classes at the Wellness Center and it is a great resource. Here is their website. Their calendar of classes can be found there.

**Elizabeth agrees that a plant based diet is best and moderation on dairy, sugar and fat as well. She is also an advocate for organic eating as much as possible. She introduced us to Bora Bora Bars, organic green tea at Trader Joe's, and gave us a list of Cruciferous vegetables. That list is available at Wikipedia. http://en.wikipedia.org/wiki/Cruciferous_vegetables. Cruciferous vegetables contain many anti cancer properties.
She also presented an article from the New York Times that warns of the hazards of grilled meats. Grilling creates HCA's that have triggered breast, colon and prostate tumors in rats. There are tips in the article for making grilled meat safer.
1. Precook in the microwave to reduce time on the grill.
2. Go heavy on the marinades they blunt the heat and reduce the number of HCA's formed.
3. Add broccoli or any other cruciferous vegie. They help metabolize the toxins in grilled meat more efficiently.
4 Avoid well done meat. Aim for medium or rare!

**Margaret is participating in Relay for Life on August 8-9. You can go to www.RelayForLife.org/martinezca her team is Angels for Margaret.
Sign up as a survivor and get a free shirt and you can join her team and walk a few laps as well. The time commitment is however many laps you want to choose. We discussed signing up and walking together for fun. You can also donate there if you are interested. There is no pressure to do this, but it could be fun! Relay For Life benefits all cancer research not just breast.

**I filled the girls in on the joys of menopause. I gave information on sexual side effects of dryness and the ways it can be handled. If you are not estrogen positive you can talk to your doctor about Premarin cream. If you are estrogen positive talk to them about testosterone cream. Small amounts of hormone do leach into the blood stream, but my oncologist and gynecologist felt it was negligible. You apply the cream daily for 2 weeks and then twice a week for maintenance. Elizabeth discovered something called the Estring which I hope she comments on below! It is inserted every 3 months and does a slow release of estrogen.

Please comment where I fell short in my note taking. We may need a minutes person next time and I have a sneaking suspicion that Tami or Elena would be good at that.

We'll meet again in a month.
Peace
tammie

1 comment:

  1. Hi, yesterday's get together was great!! This is Elizabeth and I wanted to comment on my gynecologist's (Dr. Mindy Goldman at UCSF) recommendations for vaginal changes following chemotherapy plus those related to the side effects of Tamoxifen (I am estrogen & progesterone positive). Since I still have adequate systemic estrogen to have my period, she felt it was acceptable to administer a small amount (2 mg) of estrogen locally (in the vagina) in the form of the Estring. The Estring is inserted into the vagina and stays in place for three months. Each vaginal ring contains 2 mg of estradiol; 7.5 micgograms of estradiol is released during each 24 hour period over the course of 90 days. If I don't have good results with the Estring, then she will likely recommend a 1% testostone cream. I haven't tried the Estring yet, I need to first run it by Dr. Patel (my oncologist).
    For hot flashes she prescribes venlafaxine (starting at 12.5 mg)to be taken at night. It is an antidepressant (higher dose for depression) but is apparently successful at treating hot flashes. I am not having so many hot flashes, and really don't like taking medicine, so I have not tried it yet but wanted to put it out there in case any other women are struggling with hot flashes.
    My last news flash- I am going to be having my blood drawn tomorrow for the CYP2D6 Tamoxifen resistance test. I bet you will be somewhat surprised to learn that 7% of women cannot metabolize tamoxifen to its end product, endoxifen, which is what actually binds to the estrogen receptors. My insurance has declined to pay, stating it is "experimental" (I think it is because my $9/month prescription for Tamoxifen is more agreeable to pay than the $300 test fee, although the cost of Tamoxifen over five years is over $500). I will happily pay to find out if I am actually utilizing this drug as intended. I will get the results in about three weeks. If I am in the 10% who are resistant, then an oopherectomy & hysterectomy or Lupron will be in my future. The link to an article about Tamoxifen resistance printed on 12/30/08 in the NYTimes is
    www.nytimes.com/2008/12/30/business/30gene
    In terms of good food, I really like the Recipes for Health series in the New York Times- plug in "recipes for health" in the search section.
    Enjoy!
    xo
    Eliz

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