Friday, January 16, 2009

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.

13 comments:

Anonymous said...

Will:

We were so excited last night when we got the call that once again the tumor in the heart had shrunk! What great news!! We know that you can get thru this and will continue to stand behind you every step of the way. We know that the next 12 weeks of chemo. will only continue to work. You a a strong man and I continue to see your strength everytime I see you (which has been alot lately and I love it!) Please know that we are here for you and Shana if we can do anything! We love you so much! Hope your feeling well and try to get some rest after Im sure what was a very long 2 days! We will be seeing and talking to you soon!
All our love!
Steph,Darryl and kids

Jenessa said...

Will,

I'm sorry to here that you are not getting your surgery just yet but very happy to know that the chemo is doing it's thing and the tumor is getting smaller. My family and I are keeping you and Shana in our thoughts. Keep up the positive attitude, that is a huge part of why you are doing so well.

Anonymous said...

Dear Will and Shana,

We're are so glad to hear the wonderful news that the Chemo is doing it's job! Sounds like you have some Super Doctors that are looking out for YOU and they've a Good Handle on this!

Keep up Postive Strength!
Are thoughts are always with you and again if you need anything even if you need someone to go with you on a Friday,I'm off and willing?

Love, Karen,Tom,Cain & Cole xo :)

Andrea said...

Hey Will, glad to hear the tumor shrunk again! That sucks that you have to do 12 more rounds of chemo, but it sounds like the doctors have a good plan, and it makes good sense. We are continuing to pray for you every day. Hopefully we will be able to make it back up to Syracuse sometime soon. We miss you guys!!

Dom and Andrea

Joyce said...

Hi Will and Shana,
Even though it was not the news you were hoping for, I feel from your explanation that is is almost a more positive outcome. Anything that keeps giving you a chance to beat this thing with a stick is good news. No doubt the chemo will suck, but hopefully our love, support and prayers will see you through. We continue to pay homage to your strength and determination. You are truly an inspiration to us when we feel like complaining!
Hugs and love,
Aujama Joy & Uncle Lenny

Chris Shields said...

Will,

It's great to hear that the tumor is continuing to shrink. Continue to trust your doctors, they're not going to lead you down the wrong path. I will continue to say a prayer for you and your wife at Mass on Saturdays if you promise that all these trips to Boston won't turn you into a Red Sox fan!

Anonymous said...

Glad to hear things continue to move in such a positive direction. We are keeping you and your family in our thoughts and prayers!

Love,
Marilyn & Ray

Cindy Dout said...

Will,

Glad to hear news - and good news at that! The wait must be frustrating but at least you have Xbox. We miss you at work at continue to send good thoughts. It's great to have this blog to keep in touch.

Take care,

Cindy

Anonymous said...

Excellent update!! The detail makes it easier for us lucky ones not having to go through it. God continue to bless you and Shana. We are ready to help in any way possible. You are always in my prayers.
Uncle Lenny O.

John said...

Hey Will:

Good to hear the chemo is working so well.

I am sorry that I missed you in Boston. I will have to see you next time you come to town.

Best regards,

John McKenney

Aunt Eileen said...

Will,

This blog is not only informing it's also educating us about the timeline of your cancer and the decisions behind treatment options, THANK YOU.

As others have said, you have a great team of doctors and you went into this strong and healthy. It's hard to imagine the range of emotions you feel but they're just as real as the cancer cells.

People around the world are praying for you Will. Rest as much as you can - not your natural tendency :)

xxoox Aunt Eileen & Jules

Anonymous said...

Hey Will,

I just wanted to let you know that I still think about you and hope that you are doing well. Everything still sounds positive so keep up the good energy!

Stacy Spaziani

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