Sorry this is late, I am just sitting down for the first time today.
I have a major headache. But it's not because of brain mets! Brain MRI came back negative! Didn't want brain surgery anyway.
The appointment went well. I guess. I love my Dr. and Nurse Practitioner. We might have started the meeting with a hug. I am sure giving out news like this is not a fun part of their job.
It is going to be hard to summarize an hour long meeting, but here goes...
They showed me where all my tumors are. I guess there are like 10ish. Kind of spread out. Have I had any symptoms? They ask. Now that you show me that large tumor on my right ichium (sitting bone) I have been telling Josh that ever since I worked up to running 5 miles (I am/was training for a half marathon in March) that my glutes (not sure on the spelling here) have been awful sore like they've never been. I thought I was giving them a good workout. So sore that I have had to shift my weight to my left side when I sit Indian style. And I guess I had a hard time driving last weekend to Pocatello, but I blamed it on Josh's car's uncomfortable seat. Wasn't considering a bone tumor!
And then there was this lump in my breast that appeared one day overnight a few weeks ago. I scheduled a mamogram for this coming Monday, but the PET scan showed there were several metastasis in both breasts (didn't even count these ones). The Dr.s felt them and immediately said there was no need for a mammogram, this was melanoma.
You would think with my history I would clue into things like pain and lumps.
Anyway....we got my bloodwork back and my LDH level is high (meaning there is breakdown of good cells going on). This is not the best, it puts you at a bit of a more advanced stage 4. I'm not really on the good side of stage 4, as I have liver and bone mets. Patients with cancer in the lung or subcutaneous tissues have a slightly better prognosis. So that's not my favorite.
Here are the survival rates for stage 4. They were done in 2009, and we now have 2 new drugs and a lots of new clinical trials, so they are not up to date. Still...
Pretty much I'm yellow on both charts. And no, the Dr.s do not bring up these charts in your appointment. They sent this to me when I was stage 3 (I am just showing the stage 4 part here). I am nurse, what can I say? I like the data. I would go crazy not knowing this kind of thing. Just my way of dealing with it I guess.
So, the big question. What about the drugs??? We have three options. BRAF drugs, I talked about these in an earlier post. I want to use this when I need it (symptomatic). Not a cure, but works quickly and on lots of the patients. You take it home in a pill bottle. Very cool.
IPI, this is the drug approved last year. Not a chemotherapy, easy on the body, cure rate of 10%. I was worried about the side effects, but they said their patients have done pretty well on it. This is given once a week as an IV infusion, and doesn't require nights in the hospital. There are lots of people who respond months after they begin.
And then we have IL2. Given in an ICU setting for 5 days at a time for 4 rounds. Chemotherapy plus major immunotherapy. Makes you sicker than a dog, lots of potential complications, but usually they are temporary and treatable. Cure rates 6-4%.
I think I went in hoping the IL2 would be first choice. I have read lots of articles, but really I'm just thinking logically here. Not everyone gets to do IL2. You have to be pretty healthy. Why not start there before I get sick? Then we do IPI.
There really are no answers on what order to try IPI and IL2 because IPI is so new. This Dr. says the argument of trying the IL2 while your healthy is a valid one. But because of the better response rates and easier treatment, he would say IPI first. He does not administer the IL2, so I am going tomorrow afternoon to meet with the oncologist that does. This other oncologist also knows about the trials there are around the country (it seems like the ones I'm interested in require that you have failed a stage 4 treatment), and knows his IL2 really well.
So. Tomorrow we will decide. Really, they said there is not a bad choice here. They think I will have time to do both. Either one they say I could start soon.
So I'm either going to be walking around just fine, or stuck in the ICU for the next little while. I'm good with either. Just anxious to start proving my total awesomeness (this I say like my 10 year old son)!
p.s. Did I even cry? Only to the male nurse whom I adore. And only just a little.