Houston Update & Treatment #3

Hey everyone!!

We had a very quick trip to Houston last week (Shana and my mom were there for less than 18 hours!) and it went well. On Thursday I had a full set of scans done (PET/CT and Cardiac MRI) and on Friday morning we met with Dr. Ravi. The news was good - the cancer tumors that were active at the end of July (heart tumor and sternum) were no longer active so it appears that the new chemotherapy I am on is working. Since I had the MRI late Thursday afternoon and met with the doctor early Friday morning we weren't able to get the results of that, which would tell us the size of the tumor. Dr. Ravi said he'd be surprised if it hasn't shrunk and I am waiting to hear from him about that.

Overall it was a good trip and it seems that everything is going in the right direction. We talked to Dr. Ravi some more about the future and what lies ahead once this treatment is done. It looks like I am looking at 4-6 more treatments (probably six if I keep tolerating it the way I am) which would take me right to the end of the year. After that I have been thinking that the open heart surgery that I want so badly would be next, but Dr. Ravi said that all depends on the circumstances at the end of this treatment. He said it's possible that instead of surgery I might have another six months of a different chemotherapy instead, then surgery.

We really like Dr. Ravi and his approach to my treatment. When we were at Dana Farber we were told that since the cancer has spread from it's primary location (stage 4) I can't be cured and they wanted to tailor my treatment to that point of view. For example, at one point they told me that the next thing I should do is have radiation to my heart. We even went to Boston to meet with the proton beam specialist. This treatment approach concedes that I can't beat this cancer as it makes surgery VERY difficult (and highly unlikely), has potential to do long-term damage to my heart (if the belief is that I can't win this battle, that doesn't matter) and as I was told in October, is a last resort and palliative treatment. With that said, we REALLY liked Dr. Butrynski but when they cancelled my surgery we knew we needed another opinion and this is how it worked out. Dr. Ravi told us that conventional medical wisdom says that what I have is incurable…but he doesn't believe in conventional wisdom and he will approach my treatment having a goal of curing me, and we have a lot of options to exhaust. It was great to hear that. I'm not looking forward to all the treatment that's in front of me, but I am looking forward to beating this cancer, so I will take it. He said that the curative approach would include chemo (and other cancer drugs) as well as surgery to remove EVERY cancer infected area in my body. That surprised me a bit since the tumors in my vertebrae and rib seem to be gone because of the combination of chemo and radiation, but when I asked him he said basically, if we are going to cure you, we have to cut it all out. I imagine this will take years…but I am willing to do it. Dr. Ravi is very young and very knowledgable about my specific cancer and you can tell that he's willing to push the envelope when it comes to the approach to treatment. We are very excited to have him as our doctor and we are very confident in his knowledge and experience with what I have.

We closed off our conversation with him with a discussion about how I am doing now. Someone asked him, "overall, how do you think he's doing?". His answer was pretty simple - he's doing great right now and there's reason to be optimistic, but let's not celebrate. He reminded us of something he told us last time, which is that angiosarcoma patients with bone metastasis tend to have a worse prognosis than patients who don’t. You could tell that he wanted us to have a positive attitude about how we'll I am doing, but at the same time he reminded us that I have a long way to go.

I am getting treatment this week (which sucks!!!!!) and we'll be going back to Houston sometime in mid October for my next set of scans. I will update soon about ho w chemo #3 went as well as when I get the results of the MRI. I am looking forward to good news about the size of the heart tumor!! Thanks for checking my blog!!