Wednesday, September 9, 2009

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 The news was good - the cancer tumors that were active at the end of July (heart tumor and sternum) were no longer active so it appears that the new chemotherapy I am on is working.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!!

18 comments:

Anonymous said...

Will,
Can I just say you ROCK!! You are the strongest person I know! You will win this battle, theres no question in my mind! I love you so much and it was great to see you on Sunday.. You looked amazing! Will be up to see you soon. The kids and Darryl all say hi!
Love-
Steph

Anonymous said...

Will
The news is great you will beat this
thing we are all behind you.will see you soon.Austin is still saying go bills and he says hi.
Love uncle Larry Aunt Teresa Breanne
and Austin.

Alie said...

Will,
I'm so happy to hear the great news!!You WILL beat this! :)It was nice seeing you Sunday you looked good! Good luck this week w/ #3! We'll be thinking of you!
Love,
Alie

Anonymous said...

Dr. Ravi sounds great - I love the fact that he's not just accepting "conventional wisdom". That's the attitude that's needed for success!

Lots of love, from Aunt Kate

Joyce said...

Will & Shana,
Even tempering that with somewhat of a reality check, I am SO thrilled to hear what Dr. Ravi had to say. You knew it would be a long haul, but if anyone can do it; Will, I know you are the MAN! We do check the blog all the time. Thanks for so many updates. We love you both and pray for you daily.
Much love,
Aujuma Joy

Anonymous said...

Will and Shana,

What wonderful news! WILLPOWER!!
Are thoughts will be with you on Round #3! If you need anything please call.

Love,
Tom,Karen,and Boys :)

Anonymous said...

Will, this was very uplifting news. I am so sorry not to write, as we are preparing for Ruben's surgery. Aside from the fatigue, he's doing well and actually looking forward to the tricuspid valve replacement, which is the reason for his fatigue. I continue to pray for you. Believe!
Kindest regards, Sandra Mendoza-Avila and family

Anonymous said...

Good news - you will beat this! - Good luck with treatments this week...
Marianne & Scott & kids

Lisa said...

Will - I am so glad you have a doctor that is thinking outside the box and trying some other methods of treatment. Dr. Ravi sounds great! Chemo sucks but you are a strong person and you will beat this. Have Shana rub your bald head and make a wish!
Love, Lisa Abair Vuona

Anonymous said...

Will,

So glad to hear your meeting with Dr. Ravi went well. Chemo is tough but with WILLPOWER and Shana by your side you'll beat this. Your on my prayer list and have many people praying each and every day for you. Your postive attitude is amazing! Keep up the good work. I check your blog frequently for all your updates. Good luck on round #3.

Kathy Gale (Shaun's mom)

Andrea said...

Will, We are so glad to hear that things are heading in the right direction! Keep up the great attitude! We miss you!

Andrea and Dominic

aunt eileen said...

You're doing great Will, you are an inspiring to all who know and love you. The medical professionals who are treating you are certainly committed to you.

Cheers and love
Aunt Eileen & Jules

aunt eileen said...

You're doing great Will, you are an inspiring to all who know and love you. The medical professionals who are treating you are certainly committed to you.

Cheers and love
Aunt Eileen & Jules

Anonymous said...

Can't wait until Sunday! GO BUFFALO! love you!!! You look GREAT!!
Willpower!

Love ur sis!

Cindy Dout said...

Thank you for the update. You are amazing and remain inspiring! I'm glad you're tolerating the chemo well and so happy that sites have become inactive. I'm learning so much about the process from your blog - you should turn it into a book. My thoughts are with you on round #3. Good luck and post some bald pictures.

Anonymous said...

Lets Go Buffalo!! Cant wait for the game Sunday.. It will be great to spend the day all together!
Love You!
Steph

mkasniunas said...

Keep this kind of good news coming. Keep fighting!!
Marty

somebody said...

酒店經紀人,菲梵酒店經紀,酒店經紀,禮服酒店上班,酒店小姐,便服酒店經紀,酒店打工,酒店寒假打工,酒店經紀,酒店經紀,專業酒店經紀,合法酒店經紀,酒店暑假打工,酒店兼職,便服酒店工作,酒店打工經紀,制服酒店經紀,專業酒店經紀,合法酒店經紀,酒店暑假打工,酒店兼職,便服酒店工作,酒店打工,酒店經紀,制服酒店經紀,酒店經紀