TNBC Polls & Surveys - Looking for plan B resources/leads.

Looking for plan B resources/leads.

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Forum Name: TNBC Polls & Surveys
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Topic: Looking for plan B resources/leads.

Posted By: Amara
Subject: Looking for plan B resources/leads.
Date Posted: Nov 25 2011 at 10:18am

Hello it seem that I am quickly coming to the end of what standard practices of western medicine can offer me so I am in the process of developing “Plan B”. I am hoping that you all might have some ideas for me of possibilities to consider. I am thinking mostly of either locating an appropriate study and/or of pursuing alternative treatments. Under alternative treatments I am especially interested of anyone with a similar cancer situation who has tried either the Gerson Institute or the Institute for Optimum Health in San Diego. I am open to whatever you have found that actually works.

Here is my situation in a nutshell. In June of this year I was diagnosed with Invasive Ducal Carcinoma with lymph involvement grade/stage three, in my left breast. At the advice of my Oncologist I began chemo right away (Adria and Cytoxan, 6 treatments every other week). The tumor appeared unchanged so on September 15 I had a left breast mastectomy and node dissection. The cancer in the tumor was not dead and had spread to 6 lymph nodes. They had not had good margins at the skin so I had to go back in for a skin excision on October 21. Around November 2, I found two small lumps developing in the skin on the surface of my left breast and two lumps in my armpit. Biopsy on November 11 confirmed cancer in both locations. A CT scan on November 16 identified more lymph involvement in my left chest wall and possible spots in my lung. On November 11 I started chemo again (Taxol and Cysplatin weekly three on one off) although my oncologist is now saying this cancer is likely chemo resistant. On November 21, I began radiation although they are not able to treat the chest wall or the lungs. Right now I am continuing with the radiation and chemo in combination to see if we can at least slow down the spread while I find plan B.

I have two small children (18mo and 4yrs) so dying in the near future is not really an option. Somehow I am remaining hopeful and positive. I feel like: “Ok, that didn’t work and in a way I am not surprised. Time now, to find what will”.

Any leads/ suggestions or connections to women who have beat this after a similar situation would be greatly appreciated.

Thank you.
(ps. I am not sure which forum to post this in so I have posted it in more than one. Time is short. If it is not in the right place please move it as you see fit. Thanks.)

Replies:

Posted By: trip2
Date Posted: Nov 27 2011 at 4:21pm

Hi Amara, so sorry to see you are having such a difficult time. Have you considered a second opinion?

Two links for trials are http://clinicaltrials.gov/ - http://clinicaltrials.gov/ https://www.breastcancertrials.org/bct_nation/home.seam - https://www.breastcancertrials.org/bct_nation/home.seam

I have taken this quote from an article I posted in the TNBC News/Resource section, you might look thru that section for this and other articles/studies. "Strategies showing promise in this difficult-to-treat group of patients include cytotoxic therapy with platinum-containing agents, ixabepilone, and novel targeted approaches such as poly(ADP-ribose) polymerase inhibitors."

Also try posting in the "Talk" section of the forum where I believe you will draw more attention to your question. Let us know how you are doing, my very best wishes to you.

Posted By: Grateful for today
Date Posted: Nov 27 2011 at 5:58pm

Hi All,

Just a FYI.
Great info by trip2 above.
Amara posted Nov 25, 2011 in: TNBC Metastasis/Recurrence Users
with the topic: Recurrence during treatment. Need resources.
Since there are 8 replies there, maybe further posts could go there????????

Thanks.

Grateful for today.............Judy