Sunday, March 7, 2010

New Chemo & Updates!’s been nearly two months since my last update here and I guess I have a lot to update people on! My excuse for not updating is that from the end of January until this past Friday (3/5) I’ve had six weeks of “normal” life that I haven’t had in a long time. After 14 months of chemotherapy and then open-heart surgery, I finally got a short-lived taste of what life was like before cancer. I went back to work on 1/25, less than five weeks after surgery (which I was proud of!) and felt pretty good, especially because I got a nice long break from chemo, which I desperately needed. Of course, I knew it wouldn’t last forever.

We went back to Houston in mid-February and I had scans and I have to admit that I’ve never been more anxious about scans than I was about these. The big question going into surgery was what would happen when they took me off chemo. Knowing how aggressive that this cancer is supposed to be made my doctors pretty nervous and going through such a major surgery without my security blanket (chemo) left me pretty vulnerable. We got great news on the day of my scans - all the things I worried about (lungs, liver, kidneys, etc) were clear and though there was some uptake in my sternum (uptake usually indicates active cancer) the doctors couldn’t say for sure that it wasn’t just a result of post-operative changes. So the scans were good and ultimately i’m convinced that surgery was the right decision. I sleep much better at night knowing there’s no longer a malignant tumor in my heart.

After talking about the surgery and all the things that happened between November and February, Dr. Ravi explained, as he and so many other doctors have explained many times before, that though the surgery was a success (clean margins, good recovery, etc) we’re still dealing with a multi-focal, metastatic disease and there is still a lot of work to do. He said that the best part of the surgery is that being able to examine the tumor gave us a very important piece of data that we didn’t have before. The pathology of the tumor told us that it was 90% necrotic (dead). So all the chemotherapy that I’ve endured up until the surgery was enough to kill 90% of the cancer cells in my primary tumor. Though 90% is high, it still means that 10% of those cells survived. We’ve been told since day one that since this disease is advanced stage (since we know it’s spread to my sternum, vertebrae and ribs) that it’s also likely that its spread to other places that are too small to show on scans yet. The worry, then, is that 10% of those cells are still alive, and he presented me with four options of what to do next. They are:

  • Chemotherapy: continue to attack/kill the cancer cells that are left with more systemic treatment. Since I’ve had so much chemo there are risks involved, including long term damage to my liver and kidneys, or worse case scenario, leukemia (blood cancer) that can come as a result of too much chemotherapy (this is more of a long term risk). Since I've handled it so well, I'm not too worried yet about the long term effects.
  • Targeted Therapy: (Sunitinib) this is a type of treatment that stops your body from growing blood vessels. It’s currently being used, successfully, to treat other types of cancer and is just starting to be used for Sarcoma. My reservation about this treatment is that it doesn’t kill cancer - it only stops it from growing. On top of that, some of my own research has indicated that this family of drugs is still being tested for use with Sarcoma (with positive results) but might not be covered by my insurance and is VERY expensive. This drug/concept is one that could some day be very effective in treating many different types of cancers.
  • Combination of Chemotherapy and Targeted Therapy: this would use chemo and the drugs described above together and it’s very dangerous. I’d have to move to Houston to get this treatment and after talking about the risks with Dr. Ravi I don’t think I’m willing to take those risks at this point. Maybe in the future, but not now.
  • Do nothing/wait and see: this option scares me the most. He said if I wanted a break from treatment we could take a “wait and see” approach and stop treatment. Since I decided, from day one, to be as aggressive as my doctors were willing to be, I decided immediately that this wasn’t an option for me (and Dr. Ravi and Dr. Scalzo agreed).

This is where it gets difficult. Dr. Ravi talked with us about each of the options, their risks, their benefits and the fact that there is no data to support that one is better than the other. One one hand, this is the best position for me to be in; if my cancer was growing actively they’d know what to do, but I don’t want that (obviously). On the other hand, I have to make a choice based almost purely on instinct. After talking to my family, Dr. Ravi and Dr. Scalzo I decided that I was going to stay aggressive and opt for more chemotherapy so on this past Friday (3/5) I started a new regimen that is a combination of Gemzar and Taxotiere. I don’t have to be hospitalized for this treatment and the schedule is pretty easy. It’s a three week cycle where I get Gemzar on day one, Gemzar and Taxotiere on day 8 and then get a week off (so I start a new cycle every 22 days). I will go back to Houston in April to be scanned again and decide whether or not this chemo is working. The first treatment wasn’t that bad - I did get a little sick after but compared to my last regimen (AIM) this chemo should be a walk in the park. The most important thing to me is that it will keep on killing cancer cells, which is what makes this option the most appealing.

I hope I’m not sounding pessimistic in this post. The biggest challenge for me, since surgery, is that I’m not sure what my goal is now. Since October of 2008 every decision I made was made with surgery as the end goal and now that it’s done, I don’t know what’s next. We asked Dr. Ravi at what point we might start using the word “remission” and he didn’t really have an answer for us. With this type of cancer, it’s complicated, and since I’m still being treated (with chemo) I don’t think I can use that word for a while. I am happy, though. As I keep saying, barring a miracle, everything that's happened since my diagnosis is exactly what we've hoped for.

I’ve been feeling great though - it’s been a long time since I’ve felt this good. The 12 weeks off from chemo really allowed my body some much needed time to recover. My guess is the next few months will be pretty easy compared to the AIM. Thanks to all my friends for the messages and emails - and I just want to remind people that I can’t respond to the comments in this blog (there are a few I’d like to!) so email me (my email is over on the side bar) so I can get in touch back! I will update again after my next treatment (once I know how the Taxotiere is). Thanks everyone!


Anonymous said...

As Ive said from day one..
We are behind you every step of the way.. Love you!
Steph, Darryl and kids

jennoonan said... are truly amazing!

I'm so happy for you and your family!

Enjoy life - you deserve it!

Anonymous said...

I love you Will. We will beat this. Willpower!!! MOM

Anonymous said...

Thanks so much for the update, Will!
So glad to hear all the encouraging news.
Continuing with our prayers for you and your whole family... God truly is good! Stay positive and keep up that fighting spirit!


Anonymous said...

You have taught me that prayer really does work, so thank you for that, and congratulations on your recovery thus far. I am expecting nothing but positive things coming your way from here on out :)

Joyce said...

I found your post, as always, informative, inspiring and uplifting. It was not at all negative. Your positive outlook, along with all the prayers, will keep you moving on the right path. One that we are very grateful to be able to share with you in some small way.
Lots of love to you and Shana,
Ajima Joy

Jill said...

You will beat this by doing exactly what you have been doing all along: gathering all available information, weighing options after you have the facts, letting friends and family (SO MANY!!) help when you feel discouraged and by sheer force of "Will".

Anonymous said...

Thinking of you always Will!

Love , ALie

W. A. Wittenberg said...

Been (anxiously) awaiting your next posting, following the January 12th, posting and video; I read it and watched the video with total amazement! After reading and re-reading you most recent March 2010 Posting, honestly, I decided it was more 'optimistic' than 'pessimistic'! Hang-in-there! Keep the 'amazing' faith that you have displayed throughout this entire trail you've been on for all this time!
Bill Wittenberg

Amy said...

I appreciate your PO very much the picture with the article. Continues to refuel!!

Anonymous said...

Will-You have been and will always be an incredible inspiration to all who have been fortunate enough to have known you. You helped us all to know the real meaning of Willpower.

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