Comprehensive Update--Good News!--Almost NED (only two small lung nodules to go)--through Megace and

I don’t post as often as I’d like here, mostly because I’ve been preoccupied with searching out (and implementing) treatment strategies. But I do lurk, and I wanted to share my recent good news with you.

I think the last time I posted anything was in relation to seeking a second opinion. I did that because I was frustrated with my original oncologist, who has the annoying habit of giving bad news to me over the phone—and also not being very forthcoming about the implications or considerations involved. (I decided not to go with second opinion guy, for reasons I’ll explain below.)

My first CT scan after I completed six full rounds of first-line chemo (doxorubicin and cisplatin) showed disease progression. In March, right after my surgery, I had very small, but suspicious lung nodule that my oncologist said was “not concerning.” Plus, I had at least one troublesome lymph node, the remnant attached to my left iliac artery that wasn’t fully resectable.

In September, hopeful that the chemo had accomplished what it was supposed to do, I discovered instead that I had 5 nodules in my lungs (though fortunately all 8 mm or smaller), and additional problematic lymph nodes. At that time, the radiation treatments that were supposed to happen next were taken off the table, and my oncologist suggested instead that I go on a hormone therapy, Megace (an artificial progesterone). She has had many patients who have experienced no disease progression for several years, with Megace as their only treatment, and since my tumor cells were strongly ER and PR +, she thought there was a good chance this would work well for me. In the best case, there would be some improvement, definitely no progression, but of course time would tell.

I was not only shocked and dismayed by the CT results, but also scared to hear about the Megace. What I read online about it was not at all encouraging; it was considered only a palliative treatment in most sources I read. However, when I talked with another gyn-oncologist at the other Comprehensive Cancer Center nearby, he had very little to offer me. My nodules weren’t big enough for me to qualify for Phase II clinical trials, he didn’t have much success with Megace in his own practice, and what was left would be more chemo (probably carbo-taxol).

I decided to stay with my original oncologist, who was a little more communicative in our October consult, and also to pursue every single complementary therapy that made sense to me. It became very, very clear that my survival was going to depend on my full commitment to seeking out therapies that worked for me.

So, since late September, I’ve been on a quest. I’ve adopted a vegan diet, more or less; I’ve undergone a raw food detox (an interesting but generally positive experience); I’ve started acupuncture and I’ve started Ayurveda. The acupuncture has been enormously helpful for my neuropathy (in my feet), and I think the general immune support is good, too. My acupuncturist is actually part of an integrative medicine clinic at another of the major cancer hospitals in the area, so she sees a lot of people with cancer (and also has experience dealing with oncologists!) The Ayurveda is simply wonderful, as far as I am concerned. I drink specially formulated teas, I have body/energy work done on me; I have emotional support for taking good care of myself. Oh, and I also had a couple of powerful Reiki sessions, and I started taking qi gong classes to learn more about immune system enhancement. This is in addition to my weekly yoga, T’ai Chi, and support group meetings. The fall has been very full, but very gratifying.

Going into my CT scan at the beginning of this month, I was very nervous. I've been feeling well and healthy, and doing SO MUCH stuff to get better. I really wanted my Cancer-O-Meter (to borrow ever the optimist’s image) to prove accurate. My BP was 180/84 when I went in to hear the news from the oncologist.

To our great relief and excitement, I have experienced dramatic improvement. Three of the five lung nodules are no longer visible at all, and the remaining two are half the size they were. And none of the previously enlarged lymph nodes, not even the remnant that was stuck to my left iliac artery, shows up at all. My abdominal and pelvic CT scan showed NED, in other words, and I’m almost there with my chest CT too. The oncologist was very gratified herself, surprised by the speed and comprehensiveness of my improvement, and guardedly encouraged overall.

Going forward, then, it’s more of the same. I'm still on the Megace, and I'm definitely still doing the other treatments with renewed confidence and commitment. It feels great to have gained ground already, and I want to reach full NED and have it confirmed in the spring. This is the first good news I've had all year, so we in my family are all much better than we have been for a while.

So much of cancer recovery remains a mystery. I do not claim to have full answers, even for myself. Yet I am buoyed by my success so far, and I hope that it can encourage others.
Keep the faith, sisters!