Another day, another treatment plan

Well, a lot has happened since I last checked in.  I developed swelling and a rash on my right breast and torso about a month ago and I had that biopsied last week.  I wanted some answers before I told anyone about it, and I got my answers today.  I was hoping they would tell me it either from the Coumadin I'm taking or it was inflammatory breast cancer, since, while it's the worst breast cancer to have, the prognosis for IBC is much better than stomach or unknown primary cancers.  I should have known it would be worse than that. The biopsy was positive for cancer, but not IBC. It is the same presentation as I've had all along - cancer of an unknown primary, focused on upper gastrointestinal cancers.  I had no idea cancer could develop on the skin, unless of course it's a skin cancer.  Turns out it can in my case.  Here's how:

I have cancer in my lymphatic system.  It originally presented itself in the lymph nodes of my right groin (inguinal nodes).  Further studies showed it had reached my reproductive organs, but through the lymphatic system, not through tissue (which is usually how carcinomas move).  The cancer has only ever been in the lymphatic system.  It has never spread to organs other than through lymph vessels.  This is good because it means it's contained in one system, similar to a leukemia or lymphoma.  However, it is not lymphoma and so cannot be treated as a cancer of the lymph system, much to my dismay.  Today was to be my third treatment since adding the docetaxol back into the regimen.  However, with the biopsy coming back positive for cancer, it appears the treatment is not working.  The cancer has spread.  I got another CT today three weeks earlier than originally scheduled so they can set a baseline for a new treatment I started.  This one is lovely.  I'm now on Epirubicin, 5-FU, and, starting again next week, Herceptin.  I'm no longer taking carboplatin or docetaxol (yay!).  The majority of the side effects are the same except one: Epirubicin can cause cardiac issues.  Normally this is not a huge deal except it can only be given to a certain point before it causes heart damage.  The kicker is that Herceptin has the same risk.  So I'm now on two treatments that can cause heart damage.  My doc said they normally wouldn't give both drugs together, it's just not done, but I'm special, as we all know, and she feels the potential benefits outweigh the risks.  My response to her was we're talking about my life.  I will do whatever it takes to prolong that.  So off we go.  Epirubicin is a red liquid and, thank God, they warned me it would come out in my urine as a lovely peachy-pink color.  That happens pretty quickly.  Like I said, thank God they told me that or I would've panicked just a bit.  It's quite startling to see.

So my doc also told me she's in kind of uncharted territory here and she wants me to go to Penn for a second opinion.  I asked why Penn and she said they're the best in the city area for this kind of cancer.  I asked where she would recommend outside of this area and she said Memorial Sloan Kettering.  So I'm going to both.  Dr. Dotan doesn't think either will say anything different than what has already been said, but going to them puts me in their system and on the radar for potential clinical studies.  If, God forbid, this treatment doesn't work, my next step would be a clinical trial and Fox Chase currently only has one I'd potentially be eligible for.  Dr. Dotan is going to work to get my insurance to approve me for breast cancer treatment, which is still a possibility because the cancer is now HER2 +, and that opens up even more clinical trials to me, but she thinks it'll be a fight to get approved for those studies.  I'm very happy to have a doctor who looks out for her patients enough to send them to other facilities and to admit when she's out of ideas, but I don't like that this scenario came sooner than I had hoped.  I knew I'd get to the point where standard treatments were no longer an option, but I didn't want it to be so soon.  I guess the cancer has different plans.

Hopefully the CT shows nothing much different than it did 8 weeks ago and the cancer is still only in the lymphatic system.  I'm going to start researching how to strengthen the immune system and heal the lymphatic system so I can give my body the extra boost it needs to get these drugs working properly.  I've already cut dairy down tremendously and I only eat organic meat when I eat it at all.  At this point all diary will be out and meat will be only on special occasions, like holidays and other gatherings. It's time to reset.  I may even do a cleanse, although I'm not sure how effective it would be with chemo coursing through my veins.  We'll see.  I'm going to look into a local yoga class and really start to center myself and keep my body as strong as it can be so I can continue to fight this with everything I have.  I told my doc I was very frustrated to feel fine and be as active as I am and be told my cancer is spreading.  I don't FEEL like it's spreading.  I don't FEEL like I have cancer, if not for the chemo effects.  She told me I should take that as a good thing because it means I'm strong enough to handle whatever they throw at me.  

That's one way to look at it.  I look at it as an inconvenience that is preventing me from living my life as I wish.  Fucking cancer.

xo,

Lisa