Moving Forward

Just got back from a long two days in Boston and overall I think the news was pretty good. After all the scans and injections I am probably glowing in the dark a little bit. The tumor has shrunk again, but not nearly as much as it did after the first round of chemo (in December it was 4.1 x 5.4 cm and it is currently 3.1 x 5.3 cm). As long as it keeps shrinking, regardless of by how much, the chemo is doing it’s job and that’s something for me to be excited about. This MRI also confirmed that the tumor is no longer compressing my SVC artery.

The lesions on my sternum and T4 vertebrae are still there and we are pretty sure there is another spot on my lower left rib. According to my oncologist this spot has “lit” up on scans in the past and the MRI on Wednesday confirmed a lesion on that rib. I have had a significant amount of pain in that area (since September) so it wasnt a surprise to see this spot show up on a scan. To be honest, I am relieved that this pain/spot is another bone metastasis and not something else (like an organ).

This was pretty much the first time in this ordeal that we have been faced with a choice, as my doctor gave us two options…continue on chemotherapy for another 12 treatments (over 13 weeks) or have surgery to remove the tumor. His recommendation is to go with more chemotherapy and since all of my doctors have been kicking ass to date the decision to go with his recommendation didn’t require a second thought. So, for the second time in two months, surgery is postponed, this time until at least April. Though I was, and still am, looking forward to getting it done, I am pretty happy with the plan and where this is going.

For anyone who is interested in the reasoning behind choosing chemotherapy over surgery, Dr. Butrynksi explained it pretty well. The surgery is absolutely necessary and will happen eventually, but this is considered localized treatment (only focusing on one instance of the cancer). Since the surgery is such a major surgery, I would need to be off chemo for at least 10 days prior (to get my strength back) and at least 4 weeks after (to allow for recovery). Since the cancer is stage 4 and angiosarcoma spreads quickly, this is taking a huge risk that it could spread to other parts of my body during this time. On the other hand, chemo is considered a systemic (non-localized) treatment and based on the results we have had so far we know its killing cancer cells, and the more cancer cells we kill, the less likely it is to spread to another part of my body. In other words, fixing my heart really doesn't really matter if the cancer keeps spreading. From my research, I am lucky to have this as an option as many of the people that have this cancer need immediate surgery due to the size of the tumor at diagnosis (this is the reason the average and median survival rates are so low). So doing chemo now and surgery later seems to make perfect sense to me.

We will also be meeting soon with a radiation oncologist to discuss treating the bone spots with radiation, which can be done concurrently with chemo. We specifically discussed doing this to the vertebrae and it would require daily radiation treatments for up to six weeks. Depending on the side-effects and long term effects of this, I am going to push for this soon.

Sorry about such a long post! Though I didn’t get what I wanted (surgery), I am very excited about where this is going. I am not looking forward to another 12 chemo treatments (I have already had 12) as the side-effects have gotten progressively worse, but 12 more chemo treatments will be another huge step forward towards the end goal, so I will gladly take it (I even asked him to increase the dose…but there is no clinical evidence that a higher dose would be more effective).

Thanks again to my amazing network of family and friends who have supported us in so many different ways. You really are making this easy on me. I will update again soon.

Happy New Year!

I hope everyone had a great and relaxing Christmas and New Year's. It was nice to have some time off to relax and get caught up on stuff at home (like playing Xbox). 2008 has been a difficult year for us and I am happy to move on to a new year.

It's been a while since I have updated and to be honest, there isn't much to update. I have my eleventh chemo treatment tomorrow and that's still going OK. I have felt sick more the last couple of weeks than I did during the first round, but the medication still works pretty good to control the nausea and pain (joint pain, which can get really bad) so I am not complaining. I am still tired pretty much all of the time.

I have two chemo treatments left (tomorrow and 1/9) and we learned a few days ago that we would be going back to Boston on 1/14 for testing and to meet with the doctors. I will be having a head MRI, a cardiac MRI and a full body PET/CT scan done. The head MRI is probably to take a closer look at my orbit. In October and December they did bone scans and both times there was a "hot spot" on my left orbit. The doctors said it could be sinus related but they would eventually want to look into it more. The cardiac MRI is to look at the tumor again and the full body PET/CT scan is to look for both changes in the current "spots" as well as anything new. We will be meeting with Dr. Shakar (the surgeon) and Dr. Butrynski (the oncologist) and will find out whether or not I will be having surgery this month.

I am really hoping for surgery ASAP. The pains and funny feelings I get in my chest make me think about the tumor and how badly I want it taken out. On top of that, I want to move on to the next step of this. Not knowing what's next drives me crazy, especially not knowing when. My gut tells me it's going to happen this month and we will know for sure in the next couple of weeks. I still have a very positive attitude about this and I know that I will get through it, it's just a matter of time and treatment.