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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Tuesday, February 18, 2014

Taking Control of Your Care and Answers to Trial Questions

I "fired" my local oncologist today.  OK, I didn't exactly fire her, we just agreed we had different ideas on the direction of my care.  She is not interested in dealing with trials.  She prefers to stick to a strict path of standard of care (FDA approved) drugs.  I know that these drugs prolong life for whatever limited amount of time they can keep your cancer in check (average 5 years) but none of them have good success rates for long term survival and none of them have the ability to cure metastatic cancer.  So let's just say we agreed to disagree and we wished each other the best (even hugged!) and said our goodbyes.  I got a farewell Zometa treatment and chose to move on.

I'm transferring my primary care to MD Anderson where they have more progressive treatment options available.  I feel more confident there and have always used them for a second opinion anyhow.  It will mean a lot more miles on my hamstermobile (I have a Kia Soul lol), but will be worth it if I can receive more modern care options.  Standard of care (fda approved drugs) will always be there for a fall back, but I feel I need to gamble on some of the newer treatments.  I'm especially interested in the research being done in immunology (aka vaccines or triggering your own bodies natural response to kill cancer cells).  This technology is the breakthrough technology of this year and they are making huge leaps forward with this technology and learning more and more through the trials.  I know there is a chance I will get placebo or fail a trial, but what's my alternative?  A fast train to the slaughter house down the standard care track... there is plenty of research to back that.  When you run out of standard of care drugs, you have to just hope that a trial comes along you are eligible for that works or you die.  I'm not much of a gambler in other areas of my life, but if I know the odds are against me on the known path, I feel I have a better chance in taking the risk with new drugs.  I guess we'll all find out in the long run if my gut was right or wrong, but for now, I feel good about my decision and I'm going with it.

I'm going down Friday to do all the scans to make sure I qualify.  I'll be going down for a second set of scans around the beginning of April.  If I show stability I will qualify and begin the trial.  The lady over the trial called today and I had the opportunity to ask many questions.  Here is a summary of what I asked and the answers I received:

1.  I asked about low platelets because the side effect was listed for opt-822/821 and what was involved with a platelet transfusion.  - She said that they were near the end of the phase 2 trial at MDA, and of the women she had on the trial, none had experienced this side effect.  If they did, the platelet transfusion is done through the chemo port and not a big deal.

2. I asked what a MUGA scan was.  - She said it was just an alternative to an echo-cardiogram which detects that your heart is working well and you aren't at risk to have heart issues from the trial.

3. I asked who paid for what?  She said that the things that your insurance or you would be responsible for under normal care are paid for by you or your insurance (chemo, blood tests, scans, etc).  Anything additional that the trial involves like the vaccine etc are paid by the sponsor of the clinical trial.  She said once I was approved for the trial I could contact the business office at MDA and get the full details of what *I* would be responsible for and what all was covered.

4. What portions of my medical records would I not have access to?  She said the only thing that we wouldn't have the ability to see was if we chose to donate our extra blood for use in research or to make additional vaccines for future trials.  All scan results, blood tests, lab stuff would be available to us.

5. What adjuvent is used in the vaccine?  She said Saline (which is good.  I read something that the mineral adjuvent usually used in other vaccines caused a problem because the t-cells would get confused and go back and attack the injection site instead of the cancer cells).

6. I asked about getting a copy of the results of the phase 2 trial in Taiwan.  -- She was actually aware that this had been completed already and said she would try to get these for me.

7. I asked if it was a Synthetic carbohydrate based trial.  -- she wasn't sure on the synthetic, but would find out for sure.  I think it is synthetic;however, because what I was reading said Taiwan was really working to produce synthetics rather than organic based because it was cheaper and easier to control.  She did confirm it was a carbohydrate based trial, which is something I've read up on and is something worth pursuing in my opinion.

8. I asked for a sample calendar of what would be required.  She sent the one below.

9.  I asked how effective it had been in the people she had currently enrolled (since she said some were already done and some were still on it) -- She said the ER+ PR+ were doing well(I am ER+PR+).  The ones who were triple negative had all had to drop out.  She said that the ones that were still in were achieving stable or comparable results to standard chemo at the very least.  Many have been in remission for various periods of time without progression.

I plan to call down tomorrow and talk to the social worker and see about options there are regarding a place that would be willing to work with MDA locally.


  1. What a thorough and excellent post. No one every said being your own advocate was easy. I encourage and support you in your efforts to take charge of your care.



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