Thursday, July 23, 2009

The waiting is over

I finally talked to Dr. Rini late this afternoon; the preliminary results of today's pelvic MRI are in, along with the final results on the abdominal MRI. For those of you who hadn't heard, I was supposed to have both MRIs on Monday but a communication snafu at the imaging center caused me to have to have the tests on two different days. Maybe the tech liked me so much he wanted to see me again, I don't know. :-) At any rate, Dr. Rini thought he'd have results for me on Tuesday, but I didn't hear from him.

My anxiety waiting for his call was huge by Wednesday afternoon. Thanks to some calming words from a friend on my kidney cancer email list, I calmed down last night by considering that maybe I hadn't heard from him because Wed is not a clinic day for him. Turns out he was on service on Wed and this morning, so this afternoon was the soonest he could call.

Unfortunately, the wait did not provide good results. Both the liver and the ovary are abnormal. So, it looks like I get to join the systemic therapy club; if only that group could be far more exclusive, darn it! :-) Jim and I are going to see Dr. Rini tomorrow afternoon. He gave me a brief overview today or as he called it "the view from 30,000 feet" of his thoughts on my options at this point.

Systemic therapy is medical therapy, like chemo, except that standard chemos do not work on mRCC (metastatic renal cell carcinoma). Fortunately for us current patients, several new drugs have been approved by the FDA in the past 3-4 years for use in cutting off the blood supply to RCC tumors. These are what you may have heard of as "anti-angiogenesis" drugs. Different drugs target different pathways, so if one drug doesn't work or stops working, they move you to another drug. I have "met" online a number of people who are battling RCC and finding that
it is more like a chronic disease than a life-shortening one.

We will be talking in more detail tomorrow, but these are the main options Dr. Rini is considering for me:

1. Sutent, one of the first "new" RCC drugs and right now, the gold standard for treatment of metastatic RCC. He referred to it as "the first line of defense" and it was an option that I expected.
2. Clinical trial of Avastin and Interferon vs Avastin and Torisel. Avastin is approved for treating both colon and breast cancer, and will be approved for RCC officially shortly. Right now it is combined with Interferon, but the clinical trial involves combining it with another new RCC drug, Torisel.

I will be asking about looking for another opinion about another option, which is called High Dose Interleukin 2 (HDIL2 for short). This used to be about the only treatment for mRCC. It is a very rigorous and toxic course of therapy, which involves being hospitalized and receiving a bit dose of the drug every 8 hours for several days, or until your body can't take it any more.It has a a lower response rate than the newer drugs... BUT... it is the only drug that for some people has a complete response, meaning it kills all the cancer forever (or for many years at least). Cleveland Clinic does not offer HDIL2 as a treatment for mRCC. I have heard that Dr. Rini is against it, but I have also heard that he has told at least one patient I know to go for it so that they know they've tried everything. The timing of the treatment is important. If I were to go on Sutent first, subsequent HDIL2 could cause heart problems. Yikes! Plus, if it works, I wouldn't NEED the other therapies. It sounds like hell to go through but if I can do it, I am up for the challenge. I have heard that James Cancer Center at OSU does it, as well as somewhere in Pittsburgh (not sure where but would guess UPMC) and that one of the best places to go is Beth Israel Deaconess hospital in Boston. So I will ask about it all.

There are lots of thoughts floating through my head right now, a mix of despair, sadness and disappointment along with hope. I recently bought a book about talking to your kids about your own serious illness. Haven't cracked the spine yet; I think subconsciously I was hoping that if I didn't read it, I wouldn't need it, you know? I think now is the time though. The very thought of anything keeping me from watching my sweet girls become adults is what tears me up inside
the most, but which also provides me with the biggest motivation to fight.

3 comments:

Joannah said...

Thanks for visiting my blog today! I so appreciate you checking in and being a source of encouragement.

I have added your blog to my bloglines subscription, and I will be following along and lifting you up as you pursue a clean bill of health.

Blessings!

:-)

Joan said...

Liz,
You will get through this! I read "I have "met" online a number of people who are battling RCC and finding that
it is more like a chronic disease than a life-shortening one." That's good!

If you end up in Boston at the Deaconess, keep me in mind, I am sure we can help out with housing and transportation.

Joan

kcd said...

hi liz,

i know you from fat-acc. your recent news is tough, you will be in my prayers and thoughts. i am an ultrasound tech. . . if there's anything medical i can help you with, count on it - but you are extremely educated medically. intentions for healing and really good feelings and happiness are going to you and your family.

xo

kcd (kathleen)