at long last...the treatment plan

So there has been a bit of radio silence as we cope with the new recommendations from Sloan-Kettering.  So here’s the deal. Note, this blog should be skipped by anyone who doesn’t want grim and gory details or to become depressed.

I have what’s called triple-negative breast cancer, which may not be just one thing – but lots of sub-sets of things.  It tends to be aggressive and tough-to-treat.  It does respond, at least in some cases, to chemotherapy but then tends to spread and recur anyway.  Crap news.  And it has already spread beyond the local lymph nodes to those in my neck. We already knew this, but it is BAD, BAD, BAD.

My doctor wants to treat me as if I have what’s called Locally Advance Breast Cancer, even though its already beyond strictly local (I have decided to refer to it as suburbanly advanced.)  They want to give me Double-Dense AC-T treatment – four sessions, two weeks apart of Adriamycin (Doxorubin) and Cyclophosphamide combined, then 4 sessions two week apart of Taxol (Paclitaxel).  So chemo every 2 weeks for 4 months.  The day after chemo, you get an immune-boosting drug called Neulasta.  This is very effective at boosting immune response and causes bone pain, which sound like a lot of fun.  The side effects of all this are grim and terrifying.  Highlights include the no-one-avoids it fatigue, nausea (now controlled by a separated anti-emetic regime – thank GOD for that), and other lovely things such as mouth sores, early menopause and permanent heart damage.  Of, and did I mention hair loss (who the Hell cares after that list, right?)  I mean REALLY!

This enjoyable interlude of 4 months, assuming it works (should see signs in the swollen breast tissue and lymph nodes, and there will be gobs of blood work all along) will be followed by surgery, most likely mastectomy (I am recommending both sides at this point, given the way this cancer just loves to recur, but we shall see.) The radiation.

The doctor is treating me for a cure.  If all goes super-well, she thinks there is a chance I could get rid of it permanently.  So the official party line is that is what we are all gunning for.  Got it?

The major pain and suffering this weekend has been in fighting through whether to start this right away (my vote) or delay as long as I am actually feeling better and stronger, as I am now (Steve’s vote.)  I am currently treating  myself in the following manner:

1.       Following Hoffer vitamin protocol of Vitamin C, Niacin and other supplements

2.       Exposing myself naked to the UV light for a few minutes at a time, multil4 times a day, turning myself like a rotisserie chicken to avoid burning or even tanning, in order to maximize Vitamin D production (the day after I started this I got up and worked at 8-hour day after having been practically bedridden until then.)

3.       Low-sugar vegan diet (plus 1 organic egg a day)

4.       Visualization, meditation, positive thinking and lots and lots of escape reading!

5.       Walking, running, dancing and exercize when I can (have only been feeling good enough to do this in past few days.)

I’ve lost over 10 pounds, feel better than I have in a year, and my breast is definitely less swollen and painful than it was.  Today, I felt good all day, danced with wild abandon and did leg lifts and crunches to Bob Segar and went out just now and took at run with Steve.  A RUN!  I did walk some of it, but I ran hard for at least 15 minutes and felt super-strong. 

The biggest struggle we are having now is that the Sloan-Kettering folks want me to stop almost all vitamins during treatment, based on the notion that it “interferes with” the chemo.  There is actually a raging controversy over this and we are stuck in the middle.  Steve and I are impressed by clinical results with over 2000 patients helped over the years in Canada by Abram Hoffer and his colleagues that doubled survival rates by combining the two.  There is a clinic in Mexico producing cure rates double those of MSK by combining intravenous vitamin C and chemo, among other things.  I may end up there yet (no joke!)

At this point, I don’t know whether to 1.  Tell them I’m going to take vitamins anyway 2. Don’t tell them and take the vitamins any way or 3. Follow their advice, knowing I am likely to be killing myself.  This is no good. So I am taking the strategy of asking them to provide me with the evidence and explain why they have taken the position they have taken.  If they can convince me, I might be willing to try it their way, but I expect an impasse and a fight, which is NOT where I want to be putting my energy right now.

But not to end on a low note, there is much reason to be hopeful.  I am strong, young and resourceful and there is no reason not to believe I will be in the group that survives and thrives.  Not to mention all the love and support I am getting…so keep the calls and emails and comments on the blog coming!

Love, Colleen

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