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.
Monday, July 13, 2009
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.
Thursday, June 18, 2009
Weighing my options
We were back to Boston this week and had a pretty positive meeting with Dr. Chen at the Proton Radiation center and Dr. Butrynski (my oncologist at Dana Farber). It seems the more information we get and the more we learn about my situation, the more confused and frustrated I get about what to do about it.
The proton beam radiation is a very interesting option. I have to say I feel a little better about the possibility of getting radiation directly to my heart, but its still not ideal, even according to Dr. Chen. As I've said before, Boston is one of five places in the US where you can get proton beam radiation and in six years they've only treated 18 patients with radiation directly to the heart. The benefit of radiation is that there is a 70% chance they can kill the tumor without having to put me through a very major surgery, but there are a few issues. First, it's a one shot deal. Once I have this radiation, I can never have it again in the same spot on my heart and cardiac tumors have a high recurrence rate, so if it returns a second time, radiation won't be an option. Second, surgery will be much more difficult to do because of the scar tissue the radiation will create (but not impossible). The damage done to my heart won't be as bad as it would be with other types of radiation because they are confident they could deliver this radiation without hitting my ventricles (the pumping chambers of the heart). They would hit my tricuspid valve, which could mean future valve problems, and because the radiation field would likely hit my entire atrium, it could cause significant conductive problems with my heart. These are all manageable however. The caveat given by Dr. Chen is that they only have six years of data to go by, to the long term effects aren't known like they are for other types of radiation. We were very impressed by this option, and IF surgery ultimately isn't an option for me, I will probably accept this treatment. If I do that will mean two things. First, roughly 10 weeks off of chemotherapy (scary) and second, seven weeks in Boston (like were not there enough).
Now, about the surgery, Dr. Butrynksi talked to us for over 2.5 hours yesterday, and much of that was spent discussing the decision to not do surgery. He did confirm that surgery is the best option, but explained the many individualized reasons why it might not be the best option for me (and explained why his colleagues believed this). One thing that is clear, Dr. Shakar (the surgeon in Boston) will not operate on me. We are meeting with Dr. Reardon (known as an authority on heart tumor surgery across the country) in Houston and Dr. Butrynski said that if he agreed to operate on me than he would support it. I am not going to get my hopes up, but I am glad that there is a possibility that I will be able to have surgery AND keep Dr. Butrynski as my doctor.
He also mentioned something interesting, and said one difference about my case that may give me an advantage is the fact that the metastatic disease hasn't spread to any of my soft tissue organs. He said that most commonly (still VERY uncommon) the disease spreads to the liver or the lungs, and the fact that it's only in my bones might be a good sign. We'll see.
I'm feeling great and ready to start another round of chemo tomorrow (treatment #31). The next step is Houston (early July) and after that a decision has to be made whether or not I am going to opt for surgery or radiation. I'm really excited to get going on one of these. Thanks for checking my blog and I will post again soon!
The proton beam radiation is a very interesting option. I have to say I feel a little better about the possibility of getting radiation directly to my heart, but its still not ideal, even according to Dr. Chen. As I've said before, Boston is one of five places in the US where you can get proton beam radiation and in six years they've only treated 18 patients with radiation directly to the heart. The benefit of radiation is that there is a 70% chance they can kill the tumor without having to put me through a very major surgery, but there are a few issues. First, it's a one shot deal. Once I have this radiation, I can never have it again in the same spot on my heart and cardiac tumors have a high recurrence rate, so if it returns a second time, radiation won't be an option. Second, surgery will be much more difficult to do because of the scar tissue the radiation will create (but not impossible). The damage done to my heart won't be as bad as it would be with other types of radiation because they are confident they could deliver this radiation without hitting my ventricles (the pumping chambers of the heart). They would hit my tricuspid valve, which could mean future valve problems, and because the radiation field would likely hit my entire atrium, it could cause significant conductive problems with my heart. These are all manageable however. The caveat given by Dr. Chen is that they only have six years of data to go by, to the long term effects aren't known like they are for other types of radiation. We were very impressed by this option, and IF surgery ultimately isn't an option for me, I will probably accept this treatment. If I do that will mean two things. First, roughly 10 weeks off of chemotherapy (scary) and second, seven weeks in Boston (like were not there enough).
Now, about the surgery, Dr. Butrynksi talked to us for over 2.5 hours yesterday, and much of that was spent discussing the decision to not do surgery. He did confirm that surgery is the best option, but explained the many individualized reasons why it might not be the best option for me (and explained why his colleagues believed this). One thing that is clear, Dr. Shakar (the surgeon in Boston) will not operate on me. We are meeting with Dr. Reardon (known as an authority on heart tumor surgery across the country) in Houston and Dr. Butrynski said that if he agreed to operate on me than he would support it. I am not going to get my hopes up, but I am glad that there is a possibility that I will be able to have surgery AND keep Dr. Butrynski as my doctor.
He also mentioned something interesting, and said one difference about my case that may give me an advantage is the fact that the metastatic disease hasn't spread to any of my soft tissue organs. He said that most commonly (still VERY uncommon) the disease spreads to the liver or the lungs, and the fact that it's only in my bones might be a good sign. We'll see.
I'm feeling great and ready to start another round of chemo tomorrow (treatment #31). The next step is Houston (early July) and after that a decision has to be made whether or not I am going to opt for surgery or radiation. I'm really excited to get going on one of these. Thanks for checking my blog and I will post again soon!
Thursday, June 11, 2009
Quick Update
It's actually been a pretty busy week as I have had a bunch of appointments, and have a bunch more scheduled (including Boston and Houston). We go to Boston next week to meet Dr. Chen, who will discuss the option of proton radiation with us. I am looking forward to this because we will find out how much damage this radiation will do to my heart. We also get our appointments for Houston (MD Anderson Cancer Center) for the first week of July and I am looking forward to getting their opinion as well. When in Houston we are meeting with two doctors - Dr. Ravi (with MD Anderson) and Dr. Reardon, a cardiac surgeon. I am not sure what to expect from this...other than to get another perspective.
I finished up a round of chemo last week (I have tomorrow off from chemo) and start another round of six treatments next Friday. As usual, I had some scans to check the status and there were some minor issues with my scans. Dr. Scalzo was concerned because the tumor measured a half centimeter larger than it did six weeks ago and one of my lymph nodes also measured a little larger. If I wasn't going to Houston in three weeks Dr. Scalzo would have ordered another PET Scan and Cardiac MRI (these are more detailed scans)as he was a little concerned. Since I will be getting those done in Houston, though, he decided it's OK to wait until then. Another issue that my recent scan showed was a pericardial effusion (fluid around the heart). I had this when I was initially diagnosed, but it went away after treatment started, and now it's back. I am not sure what that means, or why, but I have an appointment with Dr. Gorman, my cardiologist, on Monday.
It was kind of funny because the report from the CT scan said, in the same sentence, that there was a slight increase in the size of the cardiac tumor, but subjectivley there was no change. This was explained to us that the increase was small enough that it could be attributed to the position I was laying on the table, the position of my heart or the way the image was read/measured. My only concern is that this is really the first time the tumor didn't shrink...but I am not that worried about it. The CT scan isn't as detailed as the MRI, so when I get that in July we will see what happens.
Still working full time and feeling OK. The chemo is definatley affecting me more, but not nearly as bad as it could be, so I am happy for that. The question now seems to be how much longer this chemo is going to work for. We talked to Dr. Scalzo about it and he said at this point it could stop working any time, or could continue working for another year. I hope it keeps working for as long as possible because I don't mind the side-effects of Taxol, and I'd prefer not to have to try another chemo for a long time.
I finished up a round of chemo last week (I have tomorrow off from chemo) and start another round of six treatments next Friday. As usual, I had some scans to check the status and there were some minor issues with my scans. Dr. Scalzo was concerned because the tumor measured a half centimeter larger than it did six weeks ago and one of my lymph nodes also measured a little larger. If I wasn't going to Houston in three weeks Dr. Scalzo would have ordered another PET Scan and Cardiac MRI (these are more detailed scans)as he was a little concerned. Since I will be getting those done in Houston, though, he decided it's OK to wait until then. Another issue that my recent scan showed was a pericardial effusion (fluid around the heart). I had this when I was initially diagnosed, but it went away after treatment started, and now it's back. I am not sure what that means, or why, but I have an appointment with Dr. Gorman, my cardiologist, on Monday.
It was kind of funny because the report from the CT scan said, in the same sentence, that there was a slight increase in the size of the cardiac tumor, but subjectivley there was no change. This was explained to us that the increase was small enough that it could be attributed to the position I was laying on the table, the position of my heart or the way the image was read/measured. My only concern is that this is really the first time the tumor didn't shrink...but I am not that worried about it. The CT scan isn't as detailed as the MRI, so when I get that in July we will see what happens.
Still working full time and feeling OK. The chemo is definatley affecting me more, but not nearly as bad as it could be, so I am happy for that. The question now seems to be how much longer this chemo is going to work for. We talked to Dr. Scalzo about it and he said at this point it could stop working any time, or could continue working for another year. I hope it keeps working for as long as possible because I don't mind the side-effects of Taxol, and I'd prefer not to have to try another chemo for a long time.
Wednesday, May 27, 2009
Update...Still Waiting.
It seems like it's been a while since I have posted, but not much has changed since my last post. We've met with all of my doctors over the last two weeks, and are continuing to explore our options. Shana and I had a conference call with Dr. Butrynski last week and he explained, in detail, the decision to not have surgery.
As I explained before the decision that surgery will not benefit me is based on the fact that the cancer has metastasized (spread) outside of the primary tumor. In my case it's in four places, but I was told that it doesn’t matter whether it's in one spot or ten spots, the fact is that the cancer is in a stage where surgery doesn’t make sense, especially a surgery as major as the one they were discussing for me. This decision is an admittance from the doctors that they believe I will die from this, therefore curative treatment (surgery) is off the table. It's also been explained to me that right now my quality of life is pretty good and they don't want to make any decisions that could change that. Obviously I am disappointed and frustrated with this. We've only received good news since I have been diagnosed - every scan I have had has come back with good news (tumor shrinking, no new cancer spots). It's hard for me to understand why they didn't say this (no surgery) back in October, as nothing has changed since then that would impact the strategy. They never told me they could cure this, so I never had those expectations, but they did tell me they'd be as aggressive as possible to try to help me beat this. I feel that not doing surgery is a conservative approach that carries little risk, and is aimed at giving me a decent quality of life, but not the longetivity I'm looking for.
Though I am disappointed, I understand the decision, but I haven't accepted it yet. The proton beam radiation team at Mass General is reviewing my case this week and determining whether this type of radiation would benefit me (and if the benefits outweigh the risks). This treatment is the most expensive medical treatment available and is only available in five places in the US (I found that interesting). It's able to deliver radiation with minimal damage to surrounding tissue, but that doesn’t mean it won't do permanent damage to my heart, as the fact that my heart is constantly moving (beating) makes treating it tricky. From what I am hearing from my doctors now, I shouldn't be concerned with long term damage to my heart because it's not going to matter (they don't put it quite so bluntly). I'm approaching this with an open-mind, however, and will wait until my consultation with the proton beam specialist at Mass General.
We've also decided that it couldn't hurt to get another opinion. My doctors in Boston consulted with a doctor in Houston (Dr. Michael Reardon) who specializes in removing heart tumors. His opinion was that surgery has no benefit to me at all, but even so, if he's the expert, I want to meet him. There is also a cancer clinic in Houston (MD Anderson) that has a lot of experience with Sarcoma, so we figure we might as well make a trip out of it and try to get a consultation with one of their oncologists while we are there. We are currently working on getting them the info they need and I'm hoping to go there for their opinion sometime in the next two months. This doesn't mean I've lost faith in my current doctor. He's done a tremendous job, and the plan he came up with for me has worked better than we expected. I just want to talk to as many experts as possible as this is pretty important.
So, for now, I continue to get chemo every Friday (I have #29 this week) and we are waiting to go back to Boston to meet with the Proton Beam specialist and are trying to plan a trip to Houston for another opinion. The cumulative effects of the chemo are starting to show themselves to me as I am getting some minor neuropathy (numbness) in my hands and feet and I am still tired all the time no matter how much sleep I get (when I sleep). My attitude is still great…Shana and I are staying positive, keeping our heads up and approaching this like we have since day one. Thanks for checking in and I will not go three weeks without posting again, I promise.
As I explained before the decision that surgery will not benefit me is based on the fact that the cancer has metastasized (spread) outside of the primary tumor. In my case it's in four places, but I was told that it doesn’t matter whether it's in one spot or ten spots, the fact is that the cancer is in a stage where surgery doesn’t make sense, especially a surgery as major as the one they were discussing for me. This decision is an admittance from the doctors that they believe I will die from this, therefore curative treatment (surgery) is off the table. It's also been explained to me that right now my quality of life is pretty good and they don't want to make any decisions that could change that. Obviously I am disappointed and frustrated with this. We've only received good news since I have been diagnosed - every scan I have had has come back with good news (tumor shrinking, no new cancer spots). It's hard for me to understand why they didn't say this (no surgery) back in October, as nothing has changed since then that would impact the strategy. They never told me they could cure this, so I never had those expectations, but they did tell me they'd be as aggressive as possible to try to help me beat this. I feel that not doing surgery is a conservative approach that carries little risk, and is aimed at giving me a decent quality of life, but not the longetivity I'm looking for.
Though I am disappointed, I understand the decision, but I haven't accepted it yet. The proton beam radiation team at Mass General is reviewing my case this week and determining whether this type of radiation would benefit me (and if the benefits outweigh the risks). This treatment is the most expensive medical treatment available and is only available in five places in the US (I found that interesting). It's able to deliver radiation with minimal damage to surrounding tissue, but that doesn’t mean it won't do permanent damage to my heart, as the fact that my heart is constantly moving (beating) makes treating it tricky. From what I am hearing from my doctors now, I shouldn't be concerned with long term damage to my heart because it's not going to matter (they don't put it quite so bluntly). I'm approaching this with an open-mind, however, and will wait until my consultation with the proton beam specialist at Mass General.
We've also decided that it couldn't hurt to get another opinion. My doctors in Boston consulted with a doctor in Houston (Dr. Michael Reardon) who specializes in removing heart tumors. His opinion was that surgery has no benefit to me at all, but even so, if he's the expert, I want to meet him. There is also a cancer clinic in Houston (MD Anderson) that has a lot of experience with Sarcoma, so we figure we might as well make a trip out of it and try to get a consultation with one of their oncologists while we are there. We are currently working on getting them the info they need and I'm hoping to go there for their opinion sometime in the next two months. This doesn't mean I've lost faith in my current doctor. He's done a tremendous job, and the plan he came up with for me has worked better than we expected. I just want to talk to as many experts as possible as this is pretty important.
So, for now, I continue to get chemo every Friday (I have #29 this week) and we are waiting to go back to Boston to meet with the Proton Beam specialist and are trying to plan a trip to Houston for another opinion. The cumulative effects of the chemo are starting to show themselves to me as I am getting some minor neuropathy (numbness) in my hands and feet and I am still tired all the time no matter how much sleep I get (when I sleep). My attitude is still great…Shana and I are staying positive, keeping our heads up and approaching this like we have since day one. Thanks for checking in and I will not go three weeks without posting again, I promise.
Thursday, May 7, 2009
Major Change of Plans
For the last seven days we've been waiting for a call from Boston with a surgery date…the call came today, but with the opposite of what we were expecting. I spoke with Dr. Butrynski for about an hour, and he explained to me that he (and my surgeon) presented my case to some of their colleagues, including an expert on cardiac tumors from Houston. He told me that the overwhelming consensus among this group was that surgery to remove the tumor is not in my best interest, now or in the future. For seven months we have been expecting this surgery, looking forward to it as a major milestone in my road to recovery and to learn that it is now off the table is a huge shock. Especially after being told a week ago that the surgery was going to happen this month.
The explanation that I was given is logical - basically they don't believe the surgery increases my chance of survival. A tumor resection in the heart is a major surgery, that carries major risks and they believe that the risks heavily outweigh the benefits. The primary reason for this is the cold fact that the cancer has spread to other parts of my body and tumor itself is not the primary threat to my life, as we have known all along. In most cases, people who die from this kind of cancer die when the cancer spreads to organs like the lungs or liver. So, according to the doctors, putting me through this surgery doesn’t make sense, as the tumor is well controlled and the threat is elsewhere.
The other reason is the immediate risk of surgery. First, this cancer is very aggressive and though it hasn’t grown at all during chemotherapy, they don't know what will happen when I am taken off of it, and they don't want to take that chance yet (though we will have to do it eventually). Second, there is a possibility that the surgery initiates a response from my immune system that causes all the cancer in my body to just come to life, and because the surgery leaves you vulnerable and weak, this is a very risky situation. They don't want to take this risk for a surgery they don't really believe will help me to begin with.
The new recommendation is radiation therapy to the heart. This causes me a lot of anxiety as radiation does permanent, irreversible damage to healthy tissue and when this first started I was told, very explicitly, that radiation to my heart would cause congestive heart failure (in the future) and this option would only be recommended in a situation where it would prolong my life. That's what I was told in October. I will have a consultation with a radiation oncologist in Boston (at Mass General Hospital) sometime this month to discuss the type of radiation and the risks. I will go into this meeting with an open mind, but I can't guarantee that I will agree to radiation directly to my heart. Dr. Butrynski believes they can accomplish the same thing with radiation that they could with surgery. I am told that a combination of chemotherapy and radiation has a 30-50% chance of totally killing the tumor, leaving it as a massive scar on my heart (this is called "pathological complete response"). This approach will allow them to continue to treat me with chemotherapy as well as treat the other remaining spots (sternum and L2 vertebrae) with radiation, and won't put me through the surgery.
So is this good or bad news? I'm not sure. I need some time to gather my thoughts, do some research, question my doctors and learn about the new approach before I decide. I need to meet with the radiation specialists to discuss the radiation option, and decide if it's the way I want to go. I feel that we have a few important decisions to make and we are going to take our time. My first reaction to this information was to question how the approach could change so radically in such a short period of time. Again, we've been expecting this surgery for seven months, and now, just like that, it's not going to happen. I have to come to terms with that, but in the meantime, I am going to keep moving forward and keep believing that no matter what treatment they prescribe, I will beat this.
The explanation that I was given is logical - basically they don't believe the surgery increases my chance of survival. A tumor resection in the heart is a major surgery, that carries major risks and they believe that the risks heavily outweigh the benefits. The primary reason for this is the cold fact that the cancer has spread to other parts of my body and tumor itself is not the primary threat to my life, as we have known all along. In most cases, people who die from this kind of cancer die when the cancer spreads to organs like the lungs or liver. So, according to the doctors, putting me through this surgery doesn’t make sense, as the tumor is well controlled and the threat is elsewhere.
The other reason is the immediate risk of surgery. First, this cancer is very aggressive and though it hasn’t grown at all during chemotherapy, they don't know what will happen when I am taken off of it, and they don't want to take that chance yet (though we will have to do it eventually). Second, there is a possibility that the surgery initiates a response from my immune system that causes all the cancer in my body to just come to life, and because the surgery leaves you vulnerable and weak, this is a very risky situation. They don't want to take this risk for a surgery they don't really believe will help me to begin with.
The new recommendation is radiation therapy to the heart. This causes me a lot of anxiety as radiation does permanent, irreversible damage to healthy tissue and when this first started I was told, very explicitly, that radiation to my heart would cause congestive heart failure (in the future) and this option would only be recommended in a situation where it would prolong my life. That's what I was told in October. I will have a consultation with a radiation oncologist in Boston (at Mass General Hospital) sometime this month to discuss the type of radiation and the risks. I will go into this meeting with an open mind, but I can't guarantee that I will agree to radiation directly to my heart. Dr. Butrynski believes they can accomplish the same thing with radiation that they could with surgery. I am told that a combination of chemotherapy and radiation has a 30-50% chance of totally killing the tumor, leaving it as a massive scar on my heart (this is called "pathological complete response"). This approach will allow them to continue to treat me with chemotherapy as well as treat the other remaining spots (sternum and L2 vertebrae) with radiation, and won't put me through the surgery.
So is this good or bad news? I'm not sure. I need some time to gather my thoughts, do some research, question my doctors and learn about the new approach before I decide. I need to meet with the radiation specialists to discuss the radiation option, and decide if it's the way I want to go. I feel that we have a few important decisions to make and we are going to take our time. My first reaction to this information was to question how the approach could change so radically in such a short period of time. Again, we've been expecting this surgery for seven months, and now, just like that, it's not going to happen. I have to come to terms with that, but in the meantime, I am going to keep moving forward and keep believing that no matter what treatment they prescribe, I will beat this.
Wednesday, April 29, 2009
The Time Has Come...
We just got back from Boston (2AM Wednesday morning...) as our appointments/meeting with the doctors all went a lot longer than we thought, but it was a GREAT day as once again the news from my latest scans and tests was very positive. I had a cardiac MRI (this one only took 90 minutes...I felt blessed) and a full body PET/CT scan and both brought good news. My primary tumor continues to shrink as it's roughly 25% of the size that it was in October and it's shrunk again since January. The PET/CT scan shows no new lesions or tumors in my organs or bones and the other metastasis' remain the same.
Now for the big news that almost ensures my blood pressure will be high for the next 3-4 weeks. I will be getting two more doses of chemotherapy (5/1 and 5/8) and then it's time for the surgery I have been anxiously awaiting (and dreading) since October 13th. I don't have an exact date yet (we expect that by Friday) but it will be very close to Memorial day. I will have chemo on May 8th and must wait 10-14 days after that treatment for surgery so it will fall in that window. I will use my next blog post to update you on why Dr. Butrynksi is recommending we stop chemo (temporarily) for surgery, as this obviously comes with some risk. I have to admit that I was surprised as I completely expected to be coming home for another cycle (12 treatments) of chemo.
We actually spent a lot of time with the surgeon today (Dr. Shakar). Just talking to him about the surgery eases some of the anxiety as he is very knowledgeable and confident. Lucky me, I actually get two surgeries at the same time. The main surgery involves resecting the tumor from my heart and rebuilding my right atrium. They will also remove any scar tissue that exists as a result of the shrinking tumor. To rebuild the atrium they will either take a piece of my pericardium (the sac around my heart) or use a piece of either a pig or cow heart (cool!). This depends on how much of my atrium they have to remove, and they won't know that for sure until they get in there.
The second thing they are doing is addressing the cancer that's attacking (or past tense attacked...hopefully!) my sternum. I was surprised to learn today that they are going to actually remove my entire manubrium, which is the large bone at the top of the sternum that anchors the collar bones and top two ribs. They will have to stabilize my collar bones with a plate and won't need to re-attach those two ribs to anything. I was told this will leave a big depression (dip) in my upper chest as the plate will only be used to stabilize the collar bones and won't cover the entire area.
The surgery itself will take from 4-6 hours and I will be put on the "Heart and Lung Machine" while they work on my heart. We were told that I would be in the Intensive Care Unit for 1.5 days after surgery and then at the hospital for 6 days after so it looks like I could be in the hospital for up to 8 days. There is a chance I will need a pacemaker immediately, and if that's the case it will be done a few days after surgery, and may extend my stay by a day or two. I was told that I would be "out of commission" for 6-8 weeks which doesn't seem bad considering the type of surgery. I am positive I will be on the low end of that and plan on being back on my feet much sooner...
So, there's that...the day I have been waiting for since getting diagnosed is less than a month away. As I learn more about the surgery and what I should expect, I will keep updating (if people keep reading!). Thanks Shana, Mom, Dad, Matt, Liz, Joan and Michelle for coming to Boston with me...in between all the tests, injections and appointments, we all found some time to have fun. We went to the Yankee/Red Sox game on Sunday night...all of us decked out in our Yankee gear (except Shana with her Sox stuff) and we were actually treated pretty well (maybe the felt bad for us with the sweep and all...). Check back over the weekend!!
Now for the big news that almost ensures my blood pressure will be high for the next 3-4 weeks. I will be getting two more doses of chemotherapy (5/1 and 5/8) and then it's time for the surgery I have been anxiously awaiting (and dreading) since October 13th. I don't have an exact date yet (we expect that by Friday) but it will be very close to Memorial day. I will have chemo on May 8th and must wait 10-14 days after that treatment for surgery so it will fall in that window. I will use my next blog post to update you on why Dr. Butrynksi is recommending we stop chemo (temporarily) for surgery, as this obviously comes with some risk. I have to admit that I was surprised as I completely expected to be coming home for another cycle (12 treatments) of chemo.
We actually spent a lot of time with the surgeon today (Dr. Shakar). Just talking to him about the surgery eases some of the anxiety as he is very knowledgeable and confident. Lucky me, I actually get two surgeries at the same time. The main surgery involves resecting the tumor from my heart and rebuilding my right atrium. They will also remove any scar tissue that exists as a result of the shrinking tumor. To rebuild the atrium they will either take a piece of my pericardium (the sac around my heart) or use a piece of either a pig or cow heart (cool!). This depends on how much of my atrium they have to remove, and they won't know that for sure until they get in there.
The second thing they are doing is addressing the cancer that's attacking (or past tense attacked...hopefully!) my sternum. I was surprised to learn today that they are going to actually remove my entire manubrium, which is the large bone at the top of the sternum that anchors the collar bones and top two ribs. They will have to stabilize my collar bones with a plate and won't need to re-attach those two ribs to anything. I was told this will leave a big depression (dip) in my upper chest as the plate will only be used to stabilize the collar bones and won't cover the entire area.
The surgery itself will take from 4-6 hours and I will be put on the "Heart and Lung Machine" while they work on my heart. We were told that I would be in the Intensive Care Unit for 1.5 days after surgery and then at the hospital for 6 days after so it looks like I could be in the hospital for up to 8 days. There is a chance I will need a pacemaker immediately, and if that's the case it will be done a few days after surgery, and may extend my stay by a day or two. I was told that I would be "out of commission" for 6-8 weeks which doesn't seem bad considering the type of surgery. I am positive I will be on the low end of that and plan on being back on my feet much sooner...
So, there's that...the day I have been waiting for since getting diagnosed is less than a month away. As I learn more about the surgery and what I should expect, I will keep updating (if people keep reading!). Thanks Shana, Mom, Dad, Matt, Liz, Joan and Michelle for coming to Boston with me...in between all the tests, injections and appointments, we all found some time to have fun. We went to the Yankee/Red Sox game on Sunday night...all of us decked out in our Yankee gear (except Shana with her Sox stuff) and we were actually treated pretty well (maybe the felt bad for us with the sweep and all...). Check back over the weekend!!
Friday, April 17, 2009
Finished Round Four!!
I completed my fourth round of chemo today and as of right now I have no more treatments scheduled, which is kind of a cool feeling (that will change on 4/28). This was my 24th treatment (we consider six treatments a "round" since I have to take a week off every six treatments) and I still feel good, overall. We went to Myrtle Beach this week and had a great time….just basically relaxed on the beach/balcony and ate a lot and had a much needed rest, away from all the troubles back home (ok…only one trouble, the cancer). It was really great to get away for a few days and have nothing to worry about other than where to get "all you can eat" crab legs.
We're off to Boston next week as I will get another heart MRI (almost two hours in the MRI coffin, I need two Xanax for that), a full body PET/CT scan and talk to Dr. Butrynksi and Dr. Shakar (my oncologist and surgeon respectively). Everyone in my family has been trying to "guess" what will be next…another 6 or 12 weeks of chemotherapy or my surgery and I honestly can't decide what to hope for, so I will just hope for clean scans. I am thinking that if they opt for surgery it will happen that week, so that's kind of scary.
Since there is a good chance they will order another round or two of treatment I have to start thinking about some other things. We have begun to do some research on the long term effects of Taxol, and if it continues to work as well as it is, who knows how long I will be on it (could literally be years, I guess). Eventually, we are told, I will need bone marrow transplants as the Taxol will cause my bone marrow to stop producing blood cells. This can be problematic for long term chemotherapy patients (which I will be happy to be if that's what it takes!) and we are going to start looking into "harvesting" of my bone marrow for future transplant. People in my family can also get tested for compatibility, in case I ever need it from others. It doesn't hurt to be prepared, right?
Also, since I have been diagnosed, I have been given a bunch of books on cancer and survival. I've spent the last six months researching my specific cancer, treatment options, case studies, etc that I really haven't had time to read them, and I have decided that if I am going to continue on this road I have to start paying attention to what most of these books say. As we all know, there are many factors that will impact the outcome of this cancer…for six months I have been getting by on excellent medical care and an excellent attitude, both of which are extremely important and will go a long way in my survival. I also know that my general health is VERY important in my bodies ability to fight and handle treatment. I have to start focusing on my diet and exercise and how I can use those to my advantage. There are hundreds of books written on "cancer diets" and what foods and nutrients have been proven to help fight cancer cells and maintain a healthy immune system. I have gained 30+ pounds since this ordeal started (and I love blaming it on the steroids I am on) and I have to focus on getting that weight off (and then some!). So we are going to start paying more attention to that. I have been given 10 different books on this topic (or other topics including faith/religion, attitude, etc) and I am going to read them all over the next couple of months, including a couple others I have found. The bottom line is, I need a better "plan" that addresses every aspect of my life that can impact the outcome of this…whether that outcome is good or bad, I know I can impact it and I have to do everything I can…once again, it's all about what I can control and I know there are some things I have been ignoring.
I want to thank everyone who continues to support me. I feel great about reaching the six-month anniversary of my diagnosis (that was April 12th) and I know I couldn’t have done it without all my family and friends. Shana and I are so filled with gratitude and I feel very confident when I say that I don't think I would be where I am right now (winning) without ALL the support we have received. We have some amazing people in our lives, hundreds of them, and I want you all to know how much it and you mean to me. I love all the comments on the blog, the emails, the texts, the cards, the calls…it doesn’t seem to stop and the encouragement and concern of everyone means the world to me. Also, the Heart Walk is tomorrow and THANKS so much to everyone who contributed to help us reach (and exceed) our goal. I have sent some thank-yous and have some more to write…but thanks, thanks, thanks!
Subscribe to:
Posts (Atom)
Posts
