Saturday, July 18, 2009

Decision Time...Again

This week has been another rollercoaster as my doctor in Boston, whose carried me this far, reccomended a different drug than the doctors at MD Anderson in Houston. I was very excited (strange, huh?) about the chemo that MDA was reccomending because of their confidence in a curative approach and having surgery come next, but my loyalty to Dr. Butrynksi in Boston, and the fact that I am doing MUCH better than expected (not by me) because of him made this very difficult for me. He told me that this regimen (called AIM) given over five days will be very rough on me and he thought he could achive the same results with a different, less toxic drug. He was very clear that he wasn't reccomending against the AIM treatment, which was a key factor in my decision. I have also been in contact with two survivors who have had this same regimen, which really sealed my decision.

So in two weeks I check into the hospital for 5-6 days to get a 5 day long infusion of two different drugs, as well as another drug that protects my bladder as the chemo is very toxic while it collects there. These drugs are also heart and kidney toxic, which is why I need to be monitored closely for my first treatment. The treatment consists of drugs called doxorubicin (adriamycin), ifosfamide and mesna, abbreviated AIM. I will be in Syracuse (at Crouse) for this treatment and am hoping that after the initial infusion I will receive my next ones as an outpatient (from home). I will have sixteen days off between treatments as long as my blood counts recover in time for the next treatment. After two cycles I will return to Houston for a comparison PET Scan (they want me scanned in the same hospital for consistency). After that I hope to return to Boston for scans, if possible.

I know this one might be ruff on me (and I will probably finally lose my hair) but I am excited because Dr. Ravi (in Houston) said there is a good chance that it completley kills the heart tumor and the other active spots. He said even if the tumor vanishes (and leaves behind scar tissue) they will operate because the recurrence rate is high, so removing that tissue is crucial. The goal is essentially for me to receive 6 rounds of this chemo (three week cycles) and then go to surgey if all goes as hoped.

I do have another small problem and that's a paricardial effusion (fluid) around my heart. I think its causing some pain, swelling and shortness of breath. They say it in my last CT in June and I followed up with Dr. Gorman about it. An echo showed that it was small and hopefully not much of a concern. The impressions from the PET I had in Houston said that it had grown since my last scan, and luckily I have a follow-up with Dr. Gorman on Monday. I am hoping this doesn't become an issue as if it does it would have to be drained (with a needle I think) or even worse would need to be fixed surgically. That would probably interfere with my chemo, which would be a bad thing at this point. I am hoping to know more on Monday about that.

Thanks for checking and since there is a lot going on I will probalby be posting/updating frequently. I'm ready to move on to the next stage of this, knowing that things now get worse before they get better, but that's OK.


Anonymous said...


I know that the next few months are going to be tuff-probaly hell. You are the strongest man I know. Your strength is unreal! Continue to be the great fighter that you are. Im always here for you as Ive said so many times before! Love you tons and hope to see you again soon!

Liz said...


I am very scared for this next step, but also very excited. I know that you made the right choice, and I am here every step! We will all get through this as a family. Saying that you are an amazing and brave person is an understatement. I love you so much. I am so sorry that you have to go through all of this, I would do absolutely anything to take it away. But I cant and I feel so powerless. I do know that ur the one who will beat it, you are superman. I have and will never loose my faith in YOU. See u soon! Love you and Shana!!
WILLPOWER!! xoxoxo -Sister

Matthew McCaffrey said...


I am excited about this next step because to get to any planned destination, you have to first travel the road in front and this is where we are going next...and while this road is going to be rough, we just have to keep looking straight ahead. I love you brother and I know you are going to take this head on...I am there for anything you need, you know that.


Mom&Dad said...

Your father and I are at your side every step, turn, and bump along the way. You know that you can always count on us.
You are such a wonderful son and we both love you so much. These next few months may be difficult, but with your determination, courage, and strength, we know in our hearts that you will be the winner. WillPOWER!! GO Bills! GO Will!
Love, Mom and Dad

Anonymous said...

Hey Sweetie,

I hate that you're going to suffer through this aggressive treatment, but the possibility that it may "completely kill the heart tumor and other active spots" (I read that over and over to be sure I was reading it right!) is fabulous. You'll get through this however tough it is, and we'll all be there with you, hair or no hair.

Lots of Love from,
Aunt Kate

Kari Johansen said...

Hi Will, We haven't spoken, but I know you have been on email with my Dad, Joe. My brother is an 8 year survivor of cardiac angiosarcoma and did Aims the first 2 times. As you have heard Aims is going to suck big time, but it seems to really send the cancer into hiding for a good while. Please contact my family for any tips on how to deal with the nasty side effects. My brother really found some things to make life bearable, like drinks, snacks, medications, etc.

Anonymous said...

Good Luck today Will.. I will be thinking of you all day/week and everyother day! Love you and stay strong! You will win this battle!

John said...

Hey Will:

I hope your next rounds of chemo are very successful for you.

Hopefully, while resting, you can catch up on all of the episodes of the TO show.

Kind regards,

John McKenney

Anonymous said...


Sounds like you are going to have a tough few months ahead ofyou. You are so strong and determined to beat this and I know that you will.

You and your family are in my thoughts and prayers!


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