On Beyond Cancer

My life with metastatic breast cancer

Update on yesterday’s doctor visit February 13, 2014

Filed under: Uncategorized — onbeyondcancer @ 6:05 pm
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Yesterday’s doctors appointment went well.  The genetic test results finally came in!  So that was pretty exciting.  They did find two mutations for which there are treatments, p53 and AKT1.  The results from the genetic analysis were sent to a committee of oncologists at the Cancer Institute of NJ who made recommendations on treatments, both currently FDA approved and experimental.  The approved treatments they recommended were Afinitor and Carboplatin, both of which were on my list of possible future drugs.  Afinitor is known to cause mouth sores in more than 60% of people who take it and the main side effect for Carboplatin is low blood counts.  The committee also recommended about 4 trials that are ongoing in the NJ area that might be good for me.  The trials are all phase I, which means the treatments haven’t been proven to work, but they do target the specific mutations that I have which is a plus.  I need to thoroughly read the report to get more details.  One disappointment was that they were able to use the sample from my original mastectomy in 2009, but not EITHER of my liver biopsies (2012 &2013).  The liver biopsies did not contain enough cancerous tissue to do this kind of highly specialized analysis.  Dr H from CINJ told me that the mutations from the 2009 sample would still be present in the cancer cells growing in my body now, but it is likely that there are additional mutations (that have occurred since 2009).  There is the option of doing another biopsy in the future, but Dr. T says we will need to consider the risks vs benefits.


For the moment I’m going to continue with Gemzar.  I’ll be getting a PET scan next week to see how I’m doing.  I also had a tumor marker drawn which should be available later this week.  My counts were good yesterday, so I had my usual chemo as well as my Xgeva shot.  I was pretty tired last night and went to bed early, but had to take a pain pill first because of body aches.  My blood pressure has been consistently high over the last few months, so Dr. T gave me a water pill (HCTZ).


We’re still dealing with the snowpocalypse here in NJ….


10 Responses to “Update on yesterday’s doctor visit”

  1. Margie Says:

    Just absorbing all that information would give you a pain in the head. Hope you are feeling better. Be careful with the water pill – remember Poppy took them for a while. Love you!

  2. Robin Says:

    Mouth sores? I get those sometimes and they are hell on earth until they are gone. If it were me, I’d choose the other drug. But that’s because of how much I hate them. 😦

    Glad to see that they have some drugs for your mutation and there are some trails you may be able to be a part of. Hope they find something with a pleaent side affect like weight loss no mater how much you eat and/or full glossy hair. Wouldnt that be nice 😉

  3. Aunt Amy Says:

    Sounds like you have lots of decisions to make! Get some rest in the mean time 😉

  4. Aunt Cindy Says:

    It sounds like some positive news. I’m sure you will make the best decision for yourself. Sending love.

  5. With a certain hesitation I congratulate you with your mutations :-). I’ve been on Afinitor and seemed to be a record holder of mouth sores: four on my lower lip and they hardly healed! Afinitor worked well for me, my mets shrunk, including liver mets. You can read more on my blog.

    Afinitor seems to switch back on the hormone receptor of the mets. Mets get less hormone sensitive over time, but Afinitor manages to make them hormone sensitive again. Combined with (renewed) hormonal therapy this can shrink or stabilise the mets.

    I don’t know about the AKT1, I am not sure if I have been tested on it.

    • Thanks Diana. I do remember reading about your experience with Afinitor; in fact, that’s one reason I’m a bit worried about it.

      • Karissa, I think I have been very unlucky with Afinitor’s mouth sores. Fellow breast cancer patients have fewer mouth sores or none at all.

        You may want to check out Marjon’s blog (www.szjonnie.nl). Although she blogs in Dutch, she frequently posts food pictures of all her lunches and dinners during Afinitor. Hardly any mouth sores at all!

        Lidocain jelly helped me out in the end. I did not feel the pain and could eat and drink again.

  6. Clarke, Wilford E Says:

    Well, sounds like a combo of good news and bad – I say let’s focus on the good!

    I’m in beautiful downtown Elyria, OH, which is, of course, neither beautiful nor downtown, enjoying our own version of snow/ice challenges. Tina and I will be doing the long distance Valentine’s Day thing since I won’t be able to get home this weekend (obviously going over big on the home front ☹ ). At least I’ll be able to go home on Thursday for a few days …. Hang in there. Love, Dad

    Bill Clarke | Senior Director | Cloud Services | NTT DATA Inc | 410.353.9569 | Wilford.Clarke@nttdata.com

  7. […] about whether I should get another liver biopsy.  I’m not sure whether it was clear in my post about the Foundation Medicine DNA testing results, but they were only able to analyze the tissue from my mastectomy in 2009.  I had 2 liver biopsies […]

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