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.
Saturday, July 18, 2009
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 horrible...it 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 options...surgery 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.
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 options...surgery 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.
Tuesday, July 7, 2009
Update From Houston
We are in Houston this week and so far it's been pretty overwhelming. MD Anderson is huge - much larger than I expected, as is the medical center that it's part of, which is like it's own city. It's hot here (almost 100 degrees) but we're making the best of it (there's lots to do in Houston!) as I got so spend some time with a good friend who I haven't seen in awhile, the Astros are in town (they suck but baseball is baseball!), Phantom of the Opera is here and we can tour Reliant Stadium (where the Texans play football).
I feel overloaded with information, as the opinion of the oncologist we met with yesterday is different than that of any doctor we've met so far, so my list of options essentially got longer yesterday (and got shorter today, as you'll see). I will go into more detail after we meet with him again (after my tests) but his opinion is that now is neither the time for surgery or radiation, but is the time to switch to a more aggressive chemotherapy regimen, one that doesn't sound appealing (not that any do...). The combination he is suggesting would require a five day infusion (in the hospital) with three weeks off between treatments. Once I know more about this I will post more details.
Today we met with Dr. Michael Reardon, a cardiac surgeon that specializes in tumor resection. I can say for certain that if I ever have surgery (still praying that I get the opportunity) this is the guy I want. People come from all over the world to see him (there was a Greek family here today) and next week he and his team are traveling to Israel to remove a sarcoma tumor, so we were pretty impressed with this guys resume. The first thing he told us when he sat down was that I wasn't a candidate for surgery, for all of the reasons we've already known. My goal in meeting with him was to learn exactly what has to happen for me to become a candidate for surgery and I was disappointed that there really isn't a clear answer to that. He left the door open for surgery in the future, telling me that if and when my oncologists thought it would benefit me, he would be open to discussing it.
My goal is to have surgery as removing the tumor is a huge step towards being cured (using the word cured VERY loosely). I have made up my mind, I think, that I won't pursue radiation (to the heart) as this would jeopardize surgery in the future, but I still have to make a final decision as to what direction to go. We joked today that I am going to put a poll up on my blog and let my friends and family decide (you know...like a lifeline) what I should do. I don't know what I need to accomplish to be eligible for the surgery, but every decision I make will have that as the end goal. As I've said, they don't want to do it because it's spread outside the primary location and the metastatic disease is more of a threat to me than the primary tumor at this point. If I am able to fight this cancer off and keep it from spreading to new areas, as well as keep the current areas under control, for six months or a year I think surgery will be a more realistic option. So that's what I have to do...keep on fighting, get more chemo and I will eventually get the treatment I want.
The great thing about this place is that as I interact with people and tell them what I have they don't look at me like people do in other places (that "holy crap...you have WHAT??" look I get when I say "heart cancer"). The oncologist I met with has six other patients with cardiac angiosarcoma and Dr. Reardon removes cardiac tumors pretty regularly. It feels good to find a place where people are familiar with this and where I am not the exception.
Tomorrow (7/8) is our third anniversary and I am so grateful that I have Shana in my life. Three years ago she vowed to be here for me in "sickness and health". At the time those words didn't mean much to either of us, I don't think. We were young, in love and life was good - and we had no reason to think that "sickness" meant anything more than the flu or a cold (or in my case a hangover). Now, those words carry more weight than anything we've ever said and she's held up her end of that deal and I thank god every day for her. I am a lucky guy. We had a great trip to New York City last week to celebrate as I dragged her to a Yankees-Mets game at Citi Field (Rivera's 500th save!), a game at the new Yankee Stadium (which was awesome) and saw Phantom and Wicked on Broadway. We were going to go to Vegas but we decided to stay close to home - and we made the right decision as the trip was AWESOME.
I will update again soon about the rest of what we learn in Houston. I also want to thank my mom and dad as they are here with us, and they continue to disrupt their lives to be here (and everywhere else) to support me every step of the way. I couldn't do this without my family and their support and I spend hours thinking about how lucky I am to have such great parents, such a great brother and sister and such a great extended family. I have no idea what I would do without them. Thank you all so much.
I feel overloaded with information, as the opinion of the oncologist we met with yesterday is different than that of any doctor we've met so far, so my list of options essentially got longer yesterday (and got shorter today, as you'll see). I will go into more detail after we meet with him again (after my tests) but his opinion is that now is neither the time for surgery or radiation, but is the time to switch to a more aggressive chemotherapy regimen, one that doesn't sound appealing (not that any do...). The combination he is suggesting would require a five day infusion (in the hospital) with three weeks off between treatments. Once I know more about this I will post more details.
Today we met with Dr. Michael Reardon, a cardiac surgeon that specializes in tumor resection. I can say for certain that if I ever have surgery (still praying that I get the opportunity) this is the guy I want. People come from all over the world to see him (there was a Greek family here today) and next week he and his team are traveling to Israel to remove a sarcoma tumor, so we were pretty impressed with this guys resume. The first thing he told us when he sat down was that I wasn't a candidate for surgery, for all of the reasons we've already known. My goal in meeting with him was to learn exactly what has to happen for me to become a candidate for surgery and I was disappointed that there really isn't a clear answer to that. He left the door open for surgery in the future, telling me that if and when my oncologists thought it would benefit me, he would be open to discussing it.
My goal is to have surgery as removing the tumor is a huge step towards being cured (using the word cured VERY loosely). I have made up my mind, I think, that I won't pursue radiation (to the heart) as this would jeopardize surgery in the future, but I still have to make a final decision as to what direction to go. We joked today that I am going to put a poll up on my blog and let my friends and family decide (you know...like a lifeline) what I should do. I don't know what I need to accomplish to be eligible for the surgery, but every decision I make will have that as the end goal. As I've said, they don't want to do it because it's spread outside the primary location and the metastatic disease is more of a threat to me than the primary tumor at this point. If I am able to fight this cancer off and keep it from spreading to new areas, as well as keep the current areas under control, for six months or a year I think surgery will be a more realistic option. So that's what I have to do...keep on fighting, get more chemo and I will eventually get the treatment I want.
The great thing about this place is that as I interact with people and tell them what I have they don't look at me like people do in other places (that "holy crap...you have WHAT??" look I get when I say "heart cancer"). The oncologist I met with has six other patients with cardiac angiosarcoma and Dr. Reardon removes cardiac tumors pretty regularly. It feels good to find a place where people are familiar with this and where I am not the exception.
Tomorrow (7/8) is our third anniversary and I am so grateful that I have Shana in my life. Three years ago she vowed to be here for me in "sickness and health". At the time those words didn't mean much to either of us, I don't think. We were young, in love and life was good - and we had no reason to think that "sickness" meant anything more than the flu or a cold (or in my case a hangover). Now, those words carry more weight than anything we've ever said and she's held up her end of that deal and I thank god every day for her. I am a lucky guy. We had a great trip to New York City last week to celebrate as I dragged her to a Yankees-Mets game at Citi Field (Rivera's 500th save!), a game at the new Yankee Stadium (which was awesome) and saw Phantom and Wicked on Broadway. We were going to go to Vegas but we decided to stay close to home - and we made the right decision as the trip was AWESOME.
I will update again soon about the rest of what we learn in Houston. I also want to thank my mom and dad as they are here with us, and they continue to disrupt their lives to be here (and everywhere else) to support me every step of the way. I couldn't do this without my family and their support and I spend hours thinking about how lucky I am to have such great parents, such a great brother and sister and such a great extended family. I have no idea what I would do without them. Thank you all so much.
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