So we finally made it home Wednesday evening. Thursday was pretty much lay around and try my best to catch up on rest from that three-day trip. And yesterday, we drove down the mountain to see my oncologist, Dr Headley. We were hoping all the biopsy results had come in, but they had not yet. However, we did get a partial report. The tumor on my liver is strongly estrogen-receptor/progesterone-receptor positive so that means hormonal treatment options should work even better than chemo for me. The only downsides to that are the Faslodex injections I was getting weren’t working for me, which is why I stopped them in January. And it takes about three months for a hormonal therapy to really kick in, so what to do in the meantime? The other unfortunate news is that this cancer is still Her2neu negative. Her2neu is an oncogene that more aggressive cancers carry that can be targeted with treatment, making it very effective and not very toxic. Metastatic cancers can switch from being Her2neu positive to negative, and back again. So I was kind of hoping mine had done that so I could have Herceptin and, this summer, Pertuzumab, as options. Not this time around. It’s funny really. Only in advanced cancers would one wish for a more aggressive form of cancer so one could have more treatment options available.

Anyway, he ordered a full load of labs drawn so we can see exactly where I am right now, since stopping treatment at Progressive. He prescribed Tamoxifen for me to take … which I have mixed feelings about because it is carcinogenic itself, but I am not in a position, with such diffuse and advanced disease, to split hairs. If this cancer was an earlier stage, rather than the stage that will kill me, I wouldn’t be so quick to buy off on that. Ever since 1999, when I was first dx, I have avoided Tamoxifen. I did take it for about six months until I started spotting, then they took me off it. It can cause endometrial cancer and, since I had dodged the bullet that time, they didn’t want to take further chances. So I really never gave Tamoxifen a good run. I will be doing that starting today. But in the meantime? That is where the remainder of those biopsy results will come in handy. It looks at genetics and statistical probabilities to determine which chemo drugs will, and won’t work, for your cancer. When that comes in, we can then determine if we bring in a little chemo to keep things in check until the Tamoxifen kicks in. I will be seeing Dr Headley again next Friday, so we hope to have a full game plan then.

I will be getting my fluid drained next week. It will be scheduled for the first part of the week so at least that discomfort will be gone. I am still taking the DCA for this cancer so hopefully that will start doing me some good as well. And I saw my VA dr as well, so we can get me on Total Parenteral Nutrition (TPN) again to start putting back on some of the weight I lost while in Georgia. I have to see their nutritionist next week, hopefully the first part of the week as well, so we can get that TPN on board. But it was not all medical downer stuff yesterday. I also met my BFF downtown and we went wig shopping. I realized that I probably will never have my own hair again. It takes a good couple of years to grow hair back and for it to resume its normal texture. Do I have that much time? Especially without any chemo drugs to make it fall out? So I figured I would need to invest in a really good wig. There is a place nearby that does custom wigs to match the hair you had before you lost it. I called them but I have already lost my hair and now that I am not limited by my real hair’s texture, etc., I could have whatever I wanted. They needed to know what I wanted. So we proceeded to a local wig shop to try a bunch of stuff on. I asked for her high-end wigs so that I could feel the difference between the less-expensive ones I currently have, that drive me bonkers, and the hand-tied, lace-front ones. I have this really small head … I have always had one helluva time finding even a baseball hat to fit me and not come down over my ears. From my crown to the top of my ears, I am much shorter than most, so most wigs come down behind my ears too low. She found the one with the smallest cap and it fit like a dream!!! I liked it so much, I just went ahead and got it. It was probably 1/3 of the price and since I don’t have to style it myself, I can now have long hair again.

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Comments
  1. Melissa your hair looks good. I hope you can get answers and directed therapy soon. And some nutrition in you. Maybe you could eat better without that fluid. Marilyn

  2. Cindy says:

    Hi Melissa,
    Wow, didn’t know you were going through all that stuff in Georgia. Our computer crashed…again and so I haven’t been getting alot of emails the past month. Glad to hear you are back home again. Of course, we hope and pray your therapy will work for you and the TPN will get the weight back on. Get some rest. Would like to get together if you feel up to it. The AF Academy is keeping me busy with the full-time work.
    Much love,
    Cindy

  3. Jen says:

    so glad you made it home and got all settled in!! The new hair looks awesome! 😉

  4. Wendy says:

    Melissa, I am happy that you are home and have moved into the next step. Sorry I didn’t make it to Progressive while you were there, as it would be great to meet you. You are inspiring! It is so difficult sometimes to look for the good in the day to day things and to put one foot in front of the other. Keep on trucking, sister. Your wig is cute!
    Love,
    Wendy

  5. slythy says:

    Hi Melissa,

    Your wig looks good. My head has the opposite problem. It’s too big and wigs go flying off because they are too tight.

    Glad your home and can navigate from there. Traveling is so stressful and you’ve endured a lot of “coping” with people.

    Have you taken any estrogen blockers before? Did you see the multi center study info on trying the opposite strategy of 3 mgs estradiol?

    Hugs,
    Lynne

    • I read the one you sent me that compared high-dose (30mg) to low-dose estradiol (6mg) and talked to my onc about it too. He said he really didn’t see any long-term data on it. You know of one that was done with 3mg a day? I would like to see that one if you have it bookmarked! But if Tamoxifen doesn’t work for me, I will definitely press for that.

      I have been on hormonal therapy before, but not much Tamoxifen. I took Tamoxifen two separate times, but only for a few months each time. Then, I was earlier stage and was concerned about keeping my body as functional as possible. Before I knew any better, I was on Femara for 6 years back in the day. Then I was on Faslodex from last April until January when it stopped working. Don’t know if this will work or not, either, but at this point, since I don’t have an earlier stage cancer … and my life is truly endangered … risk vs benefit really isn’t something I think too hard about right now. 😉 It’s time to back this beast off me again even though I don’t like the thought of Tamoxifen.

  6. Denise Barnes says:

    OMG! You are home again!! I am glad to hear that. The wig looks GREAT!!!!! I love it. Shoot those of us with hair can wear wigs if I can find one that natural looking at a good price.

    I am also glad to hear you are getting out and about again. That will continue to help kick this cancer’s butt and drive it away for good!

    XOXO
    ~Denise

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