I have had seventeen radiation treatments so far and I am sure it won't come as a surprise to many that I can't wait until they are finished. As I have been told, the radiation has had many side-effects, including fatigue and pain/discomfort. The fatigue is so bad some days that I wake up after a full nights sleep feeling like I got none at all. I tolerate the fatigue pretty well, with the help of coffee, and it doesn’t bother me that much. The worst part is the pain in my throat/chest. Since they are treating my upper spine with radiation, I am getting a dose that goes in through the front of my chest and this causes short term damage to the esophagus. Swallowing certain types of foods causes a discomfort in my entire chest that is difficult to describe, but I hate it (really takes the fun out of eating!). The medication they put me on for it doesn't seem to work, so I just have to tuff it out I guess. It should only last 7-10 days after the treatment stops. All in all, I had 14 treatments on my rib (they are done with) and I have three more to go on my spine and then I am done with radiation, hopefully for good (fingers crossed!). I ended up hurting my back (don't know how) in March and when I showed up for radiation crippled and unable to get off the table under my own power they immediately sent me to see a doctor who ordered an MRI of my lower spine for the next day. I was sure it was just a muscle and it ended up being a disc injury, but it's funny how quickly they act when you have cancer and a new pain. It lasted about 10 days.
I am proud to say that through a month of daily radiation and weekly chemotherapy I haven't missed a day of work and continue to just push forward. I am convinced that the key to beating this cancer is to stand up to it by living my life as if I wasn’t sick and I think it's working. That combined with very talented doctors, lots of prayers and the love and support of my family and friends is exactly what's got me this far. I tell myself that every day and I firmly believe it.
April is a very important month. First, on 4/12, it will be six months since my diagnosis. This is an important milestone for me, personally, as much of the research I have done on cardiac angiosarcoma seems to point to five or six months as the average survival time after diagnosis (other studies won't give an average since it's so rare). Of course, there are so many variables that can impact that (and those statistics) that we've learned to take them with a grain of salt. Each case is very individual and so far everything, with a few minor exceptions, has gone my way so far. Another reason April is significant is that at the end of the month I will have complete follow-up scans, and meet with my oncologist in Boston to find out what's next. The options should be another 12 weekly chemo treatments or open-heart surgery. I'm not sure what to wish for this time…so I will just hope for clean scans and more shrinkage of the tumor and let the doctor decide the next steps.
Saturday, April 4, 2009
Saturday, March 21, 2009
Radiation Update
I started radiation therapy last Thursday and have had seven treatments already (my treatments are every day at 8AM). They are treating my 11th rib on my left side and my T4 vertebrae in my upper back. The treatment takes about 20 minutes and is pretty uneventful. I just lay on a table and this HUGE machine with four arms moves around me and buzzes. I don't feel anything (except anxiety) and then I am done. It "zaps" each area twice (once from the side and once from directly above my body). The machine is aligned by lasers and markers on my body and it basically get's aligned and takes an X-ray to ensure it's in the right spot, and then gives me a 20 second dose of radiation. The people there are extremely friendly. I have to say that my experience with Hematology & Oncology Associates (HOA) which is my treatment center in Syracuse has been amazing. Everyone, from the administrative staff, the nurses, the techs, the PA's, the research staff and the doctors have been amazing. They are so friendly and always smiling and really help to make a bad experience better. The work they do is so important and I grateful for everyone of them.
The side effects of the radiation are exactly as described. I was told that radiation doesn't have many, except when done at the same time as chemo, as it kind of intensifies those side-effects. So I am basically more tired and fatigued now, and sometimes my body feels like it's just getting old (I move slow, my joints are sore, etc). On top of that, since the radiation field passes through my esophagus , I get a sore throat once in a while. I am told that this will get worse over time, and will eventually make it difficult to swallow, but will go away soon after I stop radiation (my last dose is on April 7th). I really just don’t like the idea of radiation, but I do like the idea of it stopping the cancer from doing further damage to my T4 vertebrae, as the issues that it can cause in this specific area of my body can be pretty serious.
I had my 20th chemo treatment on Friday. Four more to go before we head back to Boston for another full set of scans and to learn what's next in my treatment plan. I am not even going to try to predict what's next…but I know we are meeting with the surgeon, so there is a chance that we go in that direction next. I am curious to know how the discovery of another spot (my L2 vertebrae) will impact their decision. The reason they don't want to do surgery now is because they are worried about taking me off chemo…they are worried that the cancer will spread more as it's usually very aggressive. Of course that's what I am worried about too, but part of me still wants to get this surgery over and done with, and behind me.
Remember to check out my Heart Walk webpage for the Syracuse Heart Walk that's on April 18th. You can check it out at http://heartwalk.kintera.org/syracuseny/willmccaffrey.
I figured I would throw this in at the end of my post this week. A few people have asked me what the difference between chemotherapy and radiation therapy are. To be honest, until my Pa (god rest his soul) got cancer in 2007 I didn't know the difference either. So, in case anyone is wondering here is the most basic explanation I can give you. Chemotherapy is a medication that is given either orally or through direct infusion into the blood (which is how I get it). It's a systemic treatment that treats your entire body. It's basically a poison that kills fast growing cells, which include cancer cells (as well as other, healthy cells, like hair, blood cells, etc). Radiation therapy is a local treatment, that targets a specific site in your body and uses radiation "beams" to burn/kill cancer cells to stop them from growing. Unfortunately, radiation can also damage healthy cells, but as the technology gets better they are better able to control and minimize this.
Finally, I want to continue to thank all of the people in my life who continue to help me through this. There are way too many people to name, but as I have said since October, I am the luckiest person alive because of the support system I have. My wife, parents, siblings, nana and family (all of them including my aunts, uncles, cousins and in-laws) have been so good to me that I know I have come this far because of them. My employer, The American Heart Association, and my boss Marty and some of the other great friends and co-workers I have there have been so supportive and flexible through this ordeal. Being able to live my life and work full time has been a huge part of the progress I have made since this began as the best way to fight and win this battle is to continue to live my life and not let the cancer beat me. Thank you so much to everyone…I am so full of love and gratitude to you all that I still can't put it into words.
The side effects of the radiation are exactly as described. I was told that radiation doesn't have many, except when done at the same time as chemo, as it kind of intensifies those side-effects. So I am basically more tired and fatigued now, and sometimes my body feels like it's just getting old (I move slow, my joints are sore, etc). On top of that, since the radiation field passes through my esophagus , I get a sore throat once in a while. I am told that this will get worse over time, and will eventually make it difficult to swallow, but will go away soon after I stop radiation (my last dose is on April 7th). I really just don’t like the idea of radiation, but I do like the idea of it stopping the cancer from doing further damage to my T4 vertebrae, as the issues that it can cause in this specific area of my body can be pretty serious.
I had my 20th chemo treatment on Friday. Four more to go before we head back to Boston for another full set of scans and to learn what's next in my treatment plan. I am not even going to try to predict what's next…but I know we are meeting with the surgeon, so there is a chance that we go in that direction next. I am curious to know how the discovery of another spot (my L2 vertebrae) will impact their decision. The reason they don't want to do surgery now is because they are worried about taking me off chemo…they are worried that the cancer will spread more as it's usually very aggressive. Of course that's what I am worried about too, but part of me still wants to get this surgery over and done with, and behind me.
Remember to check out my Heart Walk webpage for the Syracuse Heart Walk that's on April 18th. You can check it out at http://heartwalk.kintera.org/syracuseny/willmccaffrey.
I figured I would throw this in at the end of my post this week. A few people have asked me what the difference between chemotherapy and radiation therapy are. To be honest, until my Pa (god rest his soul) got cancer in 2007 I didn't know the difference either. So, in case anyone is wondering here is the most basic explanation I can give you. Chemotherapy is a medication that is given either orally or through direct infusion into the blood (which is how I get it). It's a systemic treatment that treats your entire body. It's basically a poison that kills fast growing cells, which include cancer cells (as well as other, healthy cells, like hair, blood cells, etc). Radiation therapy is a local treatment, that targets a specific site in your body and uses radiation "beams" to burn/kill cancer cells to stop them from growing. Unfortunately, radiation can also damage healthy cells, but as the technology gets better they are better able to control and minimize this.
Finally, I want to continue to thank all of the people in my life who continue to help me through this. There are way too many people to name, but as I have said since October, I am the luckiest person alive because of the support system I have. My wife, parents, siblings, nana and family (all of them including my aunts, uncles, cousins and in-laws) have been so good to me that I know I have come this far because of them. My employer, The American Heart Association, and my boss Marty and some of the other great friends and co-workers I have there have been so supportive and flexible through this ordeal. Being able to live my life and work full time has been a huge part of the progress I have made since this began as the best way to fight and win this battle is to continue to live my life and not let the cancer beat me. Thank you so much to everyone…I am so full of love and gratitude to you all that I still can't put it into words.
Tuesday, March 10, 2009
A little bump in the road...and some other stuff.
Sorry for such a long post but I have a lot to share today. I am starting radiation tomorrow morning and I have it everyday (Mon-Fri) until April 7th. I am all "marked up" and ready to go. I have marker, stickers and tattoos all over my chest and sides to help guide them. They actually tattoo little dots (that look like freckles) on your body for reference points, so they can assure they are hitting the same spot every day when I am there. I am anxious and excited to get started and I will post in the next few days about how it goes.
After a long streak of good news so far with this battle, Dr. Kotlove (my radiation oncologist) gave me some not-so-good news today after my mapping. He told me while examining my scans to pinpoint the exact spot on my 11th rib to radiate he found another spot. He contacted Dr. Butrynski (my oncologist in Boston) and discussed it with him before talking to me about it. This spot had actually shown up on a previous scan but it was dismissed as something else, but after further examination they agreed that it was most likely another metastasis. It's located on my L2 vertebrae, which is in my lower back. This spot was definitely not present on my October scans, but was there in January and there again in last weeks scans (and as I said was flagged but not determined to be cancerous at the time). It's about a quarter of the size of the spot in my T4 vertebrae so it's pretty small. This doesn’t change any of the plans and they aren't going to treat this with radiation yet because they feel that radiating three spots while I am on weekly chemo is too much. The spot is small enough where they are comfortable just monitoring it for now. This didn't upset me too much as I feel lucky that in five months this is the worst news I have received.
Dr. Kotlove spent a lot of time with me today showing me the pictures of all the lesions in my bones (which are now located in 4 spots; my T4 vertebrae, L2 vertebrae, sternum and 11th rib). He showed me pictures from October, January and March (so I could see how they have stayed the same) and showed me how a CT scan works. It was really cool, especially because I got to look at hundreds of pictures of my bones and organs. It was the first time I have actually seen pictures of the cancer in my bones and I was really happy that he spent the time to show me these. He didn’t show me pictures of the tumor in my heart, but I have seen those a few times.
I wanted to post a link to an article that caught my attention today. Articles like this really give me hope, as they showcase how amazing the medical field really is and how advanced treatment options are becoming. It seems like every month the treatment, medication and technology for treating cancer (and other diseases) gets more advanced. A few months ago my friend Andrea sent me an article about something called "autotransplant" surgery. It talked about the case of a guy who had heart cancer and because of the location of the tumors they actually removed his heart from his body, repaired it, and put it back in. This surgery is the same as transplant surgery but the heart that goes back in is the same heart that's taken out (instead of from a donor). I don't need this kind of surgery, but it's nice to know it's an option if it were to ever come to that. I have read cases of people with my type of cancer getting heart transplants, but because mine has metastasized I am not a candidate for that (probably because only 10% of people who need heart transplants actually get them, so they wouldn't give a heart to someone with metastatic cancer for obvious reasons). This article is about a seven year old girl who had a tumor in her abdomen that was intertwined throughout her organs and they performed an "autotransplant", removing most of her abdominal organs, removing the tumor and then putting them back. It's AMAZING and I pray she does well. A chaplain that we talked to while at Dana Farber in Boston told us that while we all hope for miracles, it's important to realize that the skills and abilities of the doctors that treat this kind of stuff is a god given miracle and I think she was absolutely right. Stories like this give everyone with incurable diseases hope that in the future they can be cured (or at least managed to the point where they are not terminal).
The article can be found here: http://www.cnn.com/2009/HEALTH/03/10/multiple.organ.removal.tumor/index.html
When thinking about stuff like this I realize how lucky I am to work for an organization like the American Heart Association. The mission of the AHA has always been important to me, but it's more personal now than ever before. I don't have heart disease, but because of the location of my tumor and the surgery I need I will certainly benefit from the amazing work the AHA has done. The first few days that I was going through this, when people at the hospital (doctors, nurses, etc) would ask me where I worked, they would do a double take when I said "the American Heart Association". I must have had 50 people mention how ironic it was that I worked for the AHA and got cancer in my heart. In the past few months whenever I get assigned to a new project, or see the work I have done come to fruition, I think about my situation and the millions of others that face the same types of things I face right now. And I think about all of those that the AHA has helped, and will help in the future. It's very rewarding to work for an organization like this. Besides working for the AHA, I also support them by walking and raising money for the Syracuse Heart Walk (this will be my sixth year). The walk is on 4/18 this year and if you are interested in walking or donating you can check out my personal webpage here: http://heartwalk.kintera.org/syracuseny/willmccaffrey. Let me know if you have any questions.
Sorry again for such a long post and thanks for all of the encouragement, emails and prayers. Shana and I talk every night about how lucky we are to be surrounded by such great people…our family, friends and coworkers are amazing. We take this battle day by day and so far we couldn't be happier with the results. We return to Boston at the end of April for more scans and a meeting with my oncologist and surgeon (I think I will wait until mid-August to get anxious about that!) and I am crossing my fingers that surgery could be in the near future (it's a good sign that they scheduled a meeting with the surgeon). I will post again in a few days about how the radiation is going. I hope everybody is well!
After a long streak of good news so far with this battle, Dr. Kotlove (my radiation oncologist) gave me some not-so-good news today after my mapping. He told me while examining my scans to pinpoint the exact spot on my 11th rib to radiate he found another spot. He contacted Dr. Butrynski (my oncologist in Boston) and discussed it with him before talking to me about it. This spot had actually shown up on a previous scan but it was dismissed as something else, but after further examination they agreed that it was most likely another metastasis. It's located on my L2 vertebrae, which is in my lower back. This spot was definitely not present on my October scans, but was there in January and there again in last weeks scans (and as I said was flagged but not determined to be cancerous at the time). It's about a quarter of the size of the spot in my T4 vertebrae so it's pretty small. This doesn’t change any of the plans and they aren't going to treat this with radiation yet because they feel that radiating three spots while I am on weekly chemo is too much. The spot is small enough where they are comfortable just monitoring it for now. This didn't upset me too much as I feel lucky that in five months this is the worst news I have received.
Dr. Kotlove spent a lot of time with me today showing me the pictures of all the lesions in my bones (which are now located in 4 spots; my T4 vertebrae, L2 vertebrae, sternum and 11th rib). He showed me pictures from October, January and March (so I could see how they have stayed the same) and showed me how a CT scan works. It was really cool, especially because I got to look at hundreds of pictures of my bones and organs. It was the first time I have actually seen pictures of the cancer in my bones and I was really happy that he spent the time to show me these. He didn’t show me pictures of the tumor in my heart, but I have seen those a few times.
I wanted to post a link to an article that caught my attention today. Articles like this really give me hope, as they showcase how amazing the medical field really is and how advanced treatment options are becoming. It seems like every month the treatment, medication and technology for treating cancer (and other diseases) gets more advanced. A few months ago my friend Andrea sent me an article about something called "autotransplant" surgery. It talked about the case of a guy who had heart cancer and because of the location of the tumors they actually removed his heart from his body, repaired it, and put it back in. This surgery is the same as transplant surgery but the heart that goes back in is the same heart that's taken out (instead of from a donor). I don't need this kind of surgery, but it's nice to know it's an option if it were to ever come to that. I have read cases of people with my type of cancer getting heart transplants, but because mine has metastasized I am not a candidate for that (probably because only 10% of people who need heart transplants actually get them, so they wouldn't give a heart to someone with metastatic cancer for obvious reasons). This article is about a seven year old girl who had a tumor in her abdomen that was intertwined throughout her organs and they performed an "autotransplant", removing most of her abdominal organs, removing the tumor and then putting them back. It's AMAZING and I pray she does well. A chaplain that we talked to while at Dana Farber in Boston told us that while we all hope for miracles, it's important to realize that the skills and abilities of the doctors that treat this kind of stuff is a god given miracle and I think she was absolutely right. Stories like this give everyone with incurable diseases hope that in the future they can be cured (or at least managed to the point where they are not terminal).
The article can be found here: http://www.cnn.com/2009/HEALTH/03/10/multiple.organ.removal.tumor/index.html
When thinking about stuff like this I realize how lucky I am to work for an organization like the American Heart Association. The mission of the AHA has always been important to me, but it's more personal now than ever before. I don't have heart disease, but because of the location of my tumor and the surgery I need I will certainly benefit from the amazing work the AHA has done. The first few days that I was going through this, when people at the hospital (doctors, nurses, etc) would ask me where I worked, they would do a double take when I said "the American Heart Association". I must have had 50 people mention how ironic it was that I worked for the AHA and got cancer in my heart. In the past few months whenever I get assigned to a new project, or see the work I have done come to fruition, I think about my situation and the millions of others that face the same types of things I face right now. And I think about all of those that the AHA has helped, and will help in the future. It's very rewarding to work for an organization like this. Besides working for the AHA, I also support them by walking and raising money for the Syracuse Heart Walk (this will be my sixth year). The walk is on 4/18 this year and if you are interested in walking or donating you can check out my personal webpage here: http://heartwalk.kintera.org/syracuseny/willmccaffrey. Let me know if you have any questions.
Sorry again for such a long post and thanks for all of the encouragement, emails and prayers. Shana and I talk every night about how lucky we are to be surrounded by such great people…our family, friends and coworkers are amazing. We take this battle day by day and so far we couldn't be happier with the results. We return to Boston at the end of April for more scans and a meeting with my oncologist and surgeon (I think I will wait until mid-August to get anxious about that!) and I am crossing my fingers that surgery could be in the near future (it's a good sign that they scheduled a meeting with the surgeon). I will post again in a few days about how the radiation is going. I hope everybody is well!
Tuesday, March 3, 2009
Good News Again!
Every six weeks since my diagnosis I have had follow-up scans to check the status of my disease. I had scans today in Syracuse and for some reason I was more anxious and nervous about it than usual. All my anxieties were put to rest when Dr. Scalzo opened the door and exclaimed "great news" before he even stepped in the room!
The scans I get every six weeks are to ensure that the cancer hasn’t spread, to check the tumor and ensure it isn't growing and to determine whether or not we are still on the right track. Today's scans showed no new lesions or tumors and showed that my tumor has shrunk more since the last set of scans. The current size is 3.9 x 3.4 cm (in October it was 8.4 x 5.2 cm) which means that the chemotherapy is still working to both stop the spread of the cancer and keep the tumor under control.
I am not sure why I was so anxious going into my scans today. I think it's a combination of the fact that I haven't been feeling well lately (chemo sickness, pain, etc), some new pains I have been getting (every strange feeling I get gets my mind wandering) and some new information/research I have received about my kind of cancer (which wasn't very elevating). I came across a study released in June 08 by the Cancer Society and the Mayo Clinic that is a study of every case of malignant primary cardiac tumor seen at the Mayo Clinic since 1975 (which is a whopping 34 cases). Reading it was very informative, but also not very uplifting (I've been aware of the survival rate all along and have never let it get to me, and don't plan to!). One thing that struck me though is the median survival time for cardiac tumors with metastasis (that's me). In this study (and many other's I have come across), it's five months. I will be at the five month mark in two weeks and after getting the good news I got today I am starting to feel comfortable saying that I am winning this battle. I know I have a long way to go, but I feel that today's results were a big milestone for me, especially because my disease hasn’t progressed (in fact it's regressed) in 20 weeks and these results cleared the way for me to begin radiation next week (which is another milestone I am excited about). My doctors rock.
The worst part about this is, to date, is waiting. It's like I am living my life six weeks at a time right now and can't think much further ahead than that. I have six more chemo treatments (I get this Friday off and start again on 3/13) and after that we go back to Boston to find out what's next. It's unsettling to know that I might be having surgery…but I might not. I think I will have it in May...but it might not be until July. It's hard to make plans and look into my future much more because of all the uncertainty around this. I don't know if I should register for school (I am three classes away from my M.S. degree) or if I should book a trip to Vegas this summer (and I have to plan a trip to Yankee Stadium!). I shouldn’t complain though, because if that's the worst part of what I am going through right now I guess you'd say I am doing pretty good.
I will post later this week when I know more about radiation and what's going on with that. To be honest, I haven't done too much research on it but I need to get on that. I go on Wednesday to be "mapped", which is another CT scan (or set of scans) that maps out where they are going to hit me with radiation starting next week. Thanks again to everyone for all you are doing for me. We have so much support and love and it never slows down and I absolutely believe that it's a huge part of where I am right now with this.
The scans I get every six weeks are to ensure that the cancer hasn’t spread, to check the tumor and ensure it isn't growing and to determine whether or not we are still on the right track. Today's scans showed no new lesions or tumors and showed that my tumor has shrunk more since the last set of scans. The current size is 3.9 x 3.4 cm (in October it was 8.4 x 5.2 cm) which means that the chemotherapy is still working to both stop the spread of the cancer and keep the tumor under control.
I am not sure why I was so anxious going into my scans today. I think it's a combination of the fact that I haven't been feeling well lately (chemo sickness, pain, etc), some new pains I have been getting (every strange feeling I get gets my mind wandering) and some new information/research I have received about my kind of cancer (which wasn't very elevating). I came across a study released in June 08 by the Cancer Society and the Mayo Clinic that is a study of every case of malignant primary cardiac tumor seen at the Mayo Clinic since 1975 (which is a whopping 34 cases). Reading it was very informative, but also not very uplifting (I've been aware of the survival rate all along and have never let it get to me, and don't plan to!). One thing that struck me though is the median survival time for cardiac tumors with metastasis (that's me). In this study (and many other's I have come across), it's five months. I will be at the five month mark in two weeks and after getting the good news I got today I am starting to feel comfortable saying that I am winning this battle. I know I have a long way to go, but I feel that today's results were a big milestone for me, especially because my disease hasn’t progressed (in fact it's regressed) in 20 weeks and these results cleared the way for me to begin radiation next week (which is another milestone I am excited about). My doctors rock.
The worst part about this is, to date, is waiting. It's like I am living my life six weeks at a time right now and can't think much further ahead than that. I have six more chemo treatments (I get this Friday off and start again on 3/13) and after that we go back to Boston to find out what's next. It's unsettling to know that I might be having surgery…but I might not. I think I will have it in May...but it might not be until July. It's hard to make plans and look into my future much more because of all the uncertainty around this. I don't know if I should register for school (I am three classes away from my M.S. degree) or if I should book a trip to Vegas this summer (and I have to plan a trip to Yankee Stadium!). I shouldn’t complain though, because if that's the worst part of what I am going through right now I guess you'd say I am doing pretty good.
I will post later this week when I know more about radiation and what's going on with that. To be honest, I haven't done too much research on it but I need to get on that. I go on Wednesday to be "mapped", which is another CT scan (or set of scans) that maps out where they are going to hit me with radiation starting next week. Thanks again to everyone for all you are doing for me. We have so much support and love and it never slows down and I absolutely believe that it's a huge part of where I am right now with this.
Saturday, February 14, 2009
Feburary 15th Update
Hope everyone had a nice Valentines day…I know we did (and so did the Orange!). Shana and I have been treating every day (almost) like Valentines Day since my diagnosis, so it really wasn’t a lot different than any other day, but still…we had a nice day.
I received an email this week from a woman named Sandra who found my blog while searching for information on Cardiac Angiosarcoma. As many of you know, I have been trying to find and connect with someone else with this specific cancer since my diagnosis and haven't been able to find anyone (though I have met some amazing and inspiring people with other types of cancer and even some others with other types of Angiosarcoma). Sandra's son, Ruben, was diagnosed with Cardiac Angiosarcoma just after his 16th birthday and he is now in remission at age 18. It's safe to say Ruben is an inspiration to me as he fought and survived Cardiac Angiosarcoma just like I plan on doing. I posted a link to his website under the "Links" section on the right of the blog (you need to register to view his site).
I have been emailing back and forth with Sandra all week and though I find it tragic that such a young man has had to endure what Ruben has, and wish he didn't have to, I have really enjoyed sharing experiences with his mom. It's very therapeutic to talk to, and learn from others who have been through this, especially when you know it’s the exact same thing. She told me that she has also been searching for someone with this diagnosis and in almost three years, I am the first she has been able to find. That's not a surprise to me though and I am very thankful that Sandra found me. I am sure, as long as it's OK with her, I will post more about Ruben as I learn more about what he went through.
On to how I am doing…I know I mentioned in my last post that I may have to skip a treatment because I was sick with bronchitis, but I didn't . My blood counts just made it (they have cutoffs for some of the things they measure) and I was able to get my treatment. I had chemo #16 this past Friday and each week it hits me a little harder and I feel a little sicker, but I still just go about my life telling myself that this is what I need to do to get better…and I am still doing better than most people who get chemo, and I am very thankful for that. I just wish I didn't need 10-12 hours of sleep sometimes to actually function during the day! I am meeting with the Radiologist on Wednesday to discuss the radiation regimen that they want to start and will post about that when I know more. I am kind of looking forward to it because I just feel like radiation will be progress, and get me a little closer to being where I want to be with this. They also tell me the radiation will help with the pain that I am feeling in my ribs and back, which would be nice.
Since it's Valentines day (or was yesterday) I just want to take a second to thank my two valentines…Shana and my mom. I love you both so much and I appreciate everything you do for me. Thank you and Happy Valentines Day!
I received an email this week from a woman named Sandra who found my blog while searching for information on Cardiac Angiosarcoma. As many of you know, I have been trying to find and connect with someone else with this specific cancer since my diagnosis and haven't been able to find anyone (though I have met some amazing and inspiring people with other types of cancer and even some others with other types of Angiosarcoma). Sandra's son, Ruben, was diagnosed with Cardiac Angiosarcoma just after his 16th birthday and he is now in remission at age 18. It's safe to say Ruben is an inspiration to me as he fought and survived Cardiac Angiosarcoma just like I plan on doing. I posted a link to his website under the "Links" section on the right of the blog (you need to register to view his site).
I have been emailing back and forth with Sandra all week and though I find it tragic that such a young man has had to endure what Ruben has, and wish he didn't have to, I have really enjoyed sharing experiences with his mom. It's very therapeutic to talk to, and learn from others who have been through this, especially when you know it’s the exact same thing. She told me that she has also been searching for someone with this diagnosis and in almost three years, I am the first she has been able to find. That's not a surprise to me though and I am very thankful that Sandra found me. I am sure, as long as it's OK with her, I will post more about Ruben as I learn more about what he went through.
On to how I am doing…I know I mentioned in my last post that I may have to skip a treatment because I was sick with bronchitis, but I didn't . My blood counts just made it (they have cutoffs for some of the things they measure) and I was able to get my treatment. I had chemo #16 this past Friday and each week it hits me a little harder and I feel a little sicker, but I still just go about my life telling myself that this is what I need to do to get better…and I am still doing better than most people who get chemo, and I am very thankful for that. I just wish I didn't need 10-12 hours of sleep sometimes to actually function during the day! I am meeting with the Radiologist on Wednesday to discuss the radiation regimen that they want to start and will post about that when I know more. I am kind of looking forward to it because I just feel like radiation will be progress, and get me a little closer to being where I want to be with this. They also tell me the radiation will help with the pain that I am feeling in my ribs and back, which would be nice.
Since it's Valentines day (or was yesterday) I just want to take a second to thank my two valentines…Shana and my mom. I love you both so much and I appreciate everything you do for me. Thank you and Happy Valentines Day!
Thursday, February 5, 2009
February 5th Update
I just wanted to say hello and give everyone who’s still checking an update on what’s been going on, which isn’t much really! I have been sick the last few days with bronchitis, which has been rough, but I think it’s starting to get better. I am hoping it won’t stop me from getting chemo #15 tomorrow, but I will see when I get there.
I have been feeling the effects of the chemo more often lately, but it’s still overall pretty mild compared to my expectations and what I have heard from others. I am having some nausea and joint pains, which are well controlled with medication and like always just feel fatigued mostly all the time. There is still a lot of pain and stuff going on in my chest/abdomen, but I am getting used to that, in fact it almost feels strange when I don’t get it. It’s hard to believe it’s been 16 weeks since my diagnosis – it feels like it’s been 16 months and this has certainly become a way of life for us.
A couple of weeks ago we met with a radiologist and they are considering doing some radiation therapy during my next break from chemo (my one week break that would occur at the end of this month). The radiologist was waiting for some images/scans to arrive from my last round in Boston before making a recommendation – I am hoping to find out about that soon. It sounds like they are unsure whether or not it’s needed at this point. Since we found out about how major the surgery on my vertebrae would be, and they’d like to avoid it if possible, radiation becomes the only option for treating that area. The amount of radiation they can use on that area (like any) is limited, so they are unsure if they want to treat it now or wait until (if ever) that spot starts growing/spreading. They would use a radiation technology called cyberknife on that spot. It’s robotic and seems pretty cool.
At the end of this month I will have another set of CT scans done (during my week off of chemo) just to make sure nothing has changed before having six more treatments taking me to the end of April.
I have been feeling the effects of the chemo more often lately, but it’s still overall pretty mild compared to my expectations and what I have heard from others. I am having some nausea and joint pains, which are well controlled with medication and like always just feel fatigued mostly all the time. There is still a lot of pain and stuff going on in my chest/abdomen, but I am getting used to that, in fact it almost feels strange when I don’t get it. It’s hard to believe it’s been 16 weeks since my diagnosis – it feels like it’s been 16 months and this has certainly become a way of life for us.
A couple of weeks ago we met with a radiologist and they are considering doing some radiation therapy during my next break from chemo (my one week break that would occur at the end of this month). The radiologist was waiting for some images/scans to arrive from my last round in Boston before making a recommendation – I am hoping to find out about that soon. It sounds like they are unsure whether or not it’s needed at this point. Since we found out about how major the surgery on my vertebrae would be, and they’d like to avoid it if possible, radiation becomes the only option for treating that area. The amount of radiation they can use on that area (like any) is limited, so they are unsure if they want to treat it now or wait until (if ever) that spot starts growing/spreading. They would use a radiation technology called cyberknife on that spot. It’s robotic and seems pretty cool.
At the end of this month I will have another set of CT scans done (during my week off of chemo) just to make sure nothing has changed before having six more treatments taking me to the end of April.
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.
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.
Friday, January 2, 2009
Happy New Year!
I hope everyone had a great and relaxing Christmas and New Year's. It was nice to have some time off to relax and get caught up on stuff at home (like playing Xbox). 2008 has been a difficult year for us and I am happy to move on to a new year.
It's been a while since I have updated and to be honest, there isn't much to update. I have my eleventh chemo treatment tomorrow and that's still going OK. I have felt sick more the last couple of weeks than I did during the first round, but the medication still works pretty good to control the nausea and pain (joint pain, which can get really bad) so I am not complaining. I am still tired pretty much all of the time.
I have two chemo treatments left (tomorrow and 1/9) and we learned a few days ago that we would be going back to Boston on 1/14 for testing and to meet with the doctors. I will be having a head MRI, a cardiac MRI and a full body PET/CT scan done. The head MRI is probably to take a closer look at my orbit. In October and December they did bone scans and both times there was a "hot spot" on my left orbit. The doctors said it could be sinus related but they would eventually want to look into it more. The cardiac MRI is to look at the tumor again and the full body PET/CT scan is to look for both changes in the current "spots" as well as anything new. We will be meeting with Dr. Shakar (the surgeon) and Dr. Butrynski (the oncologist) and will find out whether or not I will be having surgery this month.
I am really hoping for surgery ASAP. The pains and funny feelings I get in my chest make me think about the tumor and how badly I want it taken out. On top of that, I want to move on to the next step of this. Not knowing what's next drives me crazy, especially not knowing when. My gut tells me it's going to happen this month and we will know for sure in the next couple of weeks. I still have a very positive attitude about this and I know that I will get through it, it's just a matter of time and treatment.
It's been a while since I have updated and to be honest, there isn't much to update. I have my eleventh chemo treatment tomorrow and that's still going OK. I have felt sick more the last couple of weeks than I did during the first round, but the medication still works pretty good to control the nausea and pain (joint pain, which can get really bad) so I am not complaining. I am still tired pretty much all of the time.
I have two chemo treatments left (tomorrow and 1/9) and we learned a few days ago that we would be going back to Boston on 1/14 for testing and to meet with the doctors. I will be having a head MRI, a cardiac MRI and a full body PET/CT scan done. The head MRI is probably to take a closer look at my orbit. In October and December they did bone scans and both times there was a "hot spot" on my left orbit. The doctors said it could be sinus related but they would eventually want to look into it more. The cardiac MRI is to look at the tumor again and the full body PET/CT scan is to look for both changes in the current "spots" as well as anything new. We will be meeting with Dr. Shakar (the surgeon) and Dr. Butrynski (the oncologist) and will find out whether or not I will be having surgery this month.
I am really hoping for surgery ASAP. The pains and funny feelings I get in my chest make me think about the tumor and how badly I want it taken out. On top of that, I want to move on to the next step of this. Not knowing what's next drives me crazy, especially not knowing when. My gut tells me it's going to happen this month and we will know for sure in the next couple of weeks. I still have a very positive attitude about this and I know that I will get through it, it's just a matter of time and treatment.
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