Monday, July 13, 2009

Good News & Bad News

On Thursday in Houston I had a PET Scan and a Cardiac MRI as the oncologist at MD Anderson wanted to see current scans for himself before giving us his prognosis and opinion. The cardiac MRI was was over two hours (usually its about 1.5 hours) and I had to put my arms above my head. It was so uncomfortable...good thing I'm not claustrophobic.

The bad news is that it seems the Taxol (chemo) has stopped working and my cancer is active again. My heart tumor and the tumor in my sternum have grown since my last scans, and they both "lit up" on the PET scan. Though we were hoping the Taxol would keep things at bay for longer, 9 months is pretty good as they told us in Houston they usually expect a response for around 5 months.

The good news was that after seeing my scans Dr. Ravi was very optimistic about my case and long-term outlook. He told me that my scans look surprisingly good for someone with metastatic disease after nine months and referred to my oncologist in Boston (Dr. B) as an "artist". He also said that most metastatic cardiac angiosarcoma patients look like they been through three tours of Vietnam after nine months. His optimism was very well received and he used the term "curative therapy" multiple times. After he left the room after that meeting it was the first time since I've been diagnosed that I saw Shana and my mom cry and it didn't break my heart (happy tears!).

He did remind us that though he's optimistic, this is still pretty serious and even more complicated because my disease has spread to my bones. When I mentioned his use of the word "curative" he reminded us that they use that term very loosely with Sarcoma's as they technically aren't curable. I think he wanted to make sure that we didn't misread his optimism...we still know what's facing us. So, after his prognosis came his recommendation about treatment. He said I have two now, chemo later OR chemo now, surgery later. Since my goal is to have this surgery, hearing him say that made the trip to Houston worthwhile. I've been saying all along that this surgery is a giant leap to me beating this cancer, and after the roller coaster of being told that I was going to have it, then that I was probably never going to have it, just knowing that it's back on the table makes me feel great. He did explain why it's better to go with chemo first (that's another post), so that's what I am opting for.

Now comes the fun part of coordinating between three doctors, one in Syracuse, one in Houston and one in Boston to figure out when I am going to start my new regimen and more importantly WHERE I will start it. We are waiting to get the MRI comparison done to see how much the tumor has grown (in my heart) and that will determine how soon we need to start (if it's grown alot I imagine I could be on this new chemo within two weeks, if it's minor then we might be able to take our time).

So, overall, even though the fact that the tumor and sternum site is active and growing is bad news, it didn't really matter because the overall news and opinion was very positive. I'm starting to research the next chemo regimen I will be on (Adriamiacin and Ifosamide) and will update my blog with some info about that when I find out the details (when, where, etc). Thanks again everyone for all of your support - I really feel that after 9 months things couldn't be going better for me with this. My attitude and my ability to fight this is strengthened by the support that we have received and continue to receive from our amazing family, friends and co-workers and I firmly believe that your support and encouragement have carried me this far, so thank you. Of course, I also have to thank my team of doctors (Dr. Butrynksi, Dr. Scalzo, Dr. Gorman, Dr. Kotlove and now Dr. Ravi) who are amazing doctors and amazing people.


Anonymous said...

I like the good news and I'm not sure about the bad news. You have a great attitude and I appreciate your keeping us up to date with your blog. Naything I can do just let me know. Stay tight with your family and good luck.

Mr. Leskoske

Anonymous said...

Hi Will,
You make everything very clear. I'm so glad you are keeping your blog up. And I like the new look!

Love you lots,
Aunt Kate

Anonymous said...

We think of you on a regular basis, but so sorry I don't get to write as much due to so much going on right now. Keep up your positive attitude, it's so important. We're waiting to hear this week when Ruben will have heart surgery to replace a valve. His attitude, like yours, is very good. You both are very strong people!
With kindest regards,
Sandra Mendoza-Avila