› Forums › General Melanoma Community › Surgery or not?
- This topic has 57 replies, 12 voices, and was last updated 7 years, 11 months ago by
jenny22.
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- May 17, 2016 at 3:09 am
Good evening all, hope this finds you well.
I have appt coming up Thursday for a consult on genetically modified t-cell therapy. I'd like to pose a question to anyone willing to respond. First let me give you info in case you haven't seen previous posts. I was on nivo for 6 months and pet/ct scan revealed roughly an orange sized tumor in abdomen and 2 smaller tumors in lower back/love handle area. I've researched the tcell treatment and I don't see anything regarding resection of tumor(s). I know in TIL they remove tumor to harvest, this trial is from blood. Anyways, if they don't remove tumor my family is opposed to this treatment and would like tumor removed and start an ipi combo with onclytic virus. My dad has been researching and says he found some info from Huntsman in Utah saying there has been success. My head is just spinning. What would you do if they say we leave the tumor in abdomen? These decisions are tough.
Josh
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- May 17, 2016 at 5:05 am
Hi Josh,
I learned that is was normal procedure for them to want to have at least 2 tumors to look at. One would be the "target" tumor throughout the trial for measurements to be done. The other one just needed for the period prior to the first treatment so they could get biopsy material from it, without potentially disturbing the target tumor already under measurement.
Questions for your docs — given that there are 3 tumors present, is it necessary that the larger tumor in the abdomen be the "target" tumor? Or could surgery be done to take that one out, and use one of the remaining smaller tumors as the target for the trial? Is there any reason the smaller tumors wouldn't be sufficient for satisying the entry criteria? Would surgery necessitate a delay for entering the trial, if so how much?
I know this would be your second clinical trial. I hope you get through this decision making process with a course of action you believe in.
– Kyle
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- May 17, 2016 at 2:25 pm
If your doctors do say that, maybe try to probe to see if it's a "preference" on their part, or if it's a "must".
I know you're the only person who has, or will have enough info to decide. I guess there's so many factors spinning in your mind. You have to be your own oddsmaker, combined with yow much you trust the odds-making abilities of your oncologists.
Things I might think about include,
– How big are the two smaller tumors? Are they big enough on their own to be target tumors for another trial? (one usually needs to be > 2cm, right?)
– How promising is the surgery on the orange-sized tumor, as far as its location, shape, invasiveness, etc.
– How promising is the trial treatment?
– If you get surgery, how willing are you to risk waiting to see if the 2 smaller tumors grow larger, or risk whatever else in the meantime, if you don't get into this or another trial right away?
– How much time do you want to have to look for other non-PD1-based trials?
– If the TIL trial isn't effective, how much are you worried about the growth of the bigger one during the course of the trial? How long do your doctors think it would normally take for this trial to either show itself as effective in generating a response, or not?
– How much time do you think getting surgery would buy, as far as growth of the other two smaller tumors?
– If the bigger one comes out with surgery, how concerned are you about what kind of trouble the two smaller tumors could cause, and how fast they could cause it?
I'm certain there are other important questions to weight than I can think of. I hope you are able to get to the level of confidence you want in whichever choice you make.
– Kyle
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- May 17, 2016 at 2:25 pm
If your doctors do say that, maybe try to probe to see if it's a "preference" on their part, or if it's a "must".
I know you're the only person who has, or will have enough info to decide. I guess there's so many factors spinning in your mind. You have to be your own oddsmaker, combined with yow much you trust the odds-making abilities of your oncologists.
Things I might think about include,
– How big are the two smaller tumors? Are they big enough on their own to be target tumors for another trial? (one usually needs to be > 2cm, right?)
– How promising is the surgery on the orange-sized tumor, as far as its location, shape, invasiveness, etc.
– How promising is the trial treatment?
– If you get surgery, how willing are you to risk waiting to see if the 2 smaller tumors grow larger, or risk whatever else in the meantime, if you don't get into this or another trial right away?
– How much time do you want to have to look for other non-PD1-based trials?
– If the TIL trial isn't effective, how much are you worried about the growth of the bigger one during the course of the trial? How long do your doctors think it would normally take for this trial to either show itself as effective in generating a response, or not?
– How much time do you think getting surgery would buy, as far as growth of the other two smaller tumors?
– If the bigger one comes out with surgery, how concerned are you about what kind of trouble the two smaller tumors could cause, and how fast they could cause it?
I'm certain there are other important questions to weight than I can think of. I hope you are able to get to the level of confidence you want in whichever choice you make.
– Kyle
-
- May 17, 2016 at 2:25 pm
If your doctors do say that, maybe try to probe to see if it's a "preference" on their part, or if it's a "must".
I know you're the only person who has, or will have enough info to decide. I guess there's so many factors spinning in your mind. You have to be your own oddsmaker, combined with yow much you trust the odds-making abilities of your oncologists.
Things I might think about include,
– How big are the two smaller tumors? Are they big enough on their own to be target tumors for another trial? (one usually needs to be > 2cm, right?)
– How promising is the surgery on the orange-sized tumor, as far as its location, shape, invasiveness, etc.
– How promising is the trial treatment?
– If you get surgery, how willing are you to risk waiting to see if the 2 smaller tumors grow larger, or risk whatever else in the meantime, if you don't get into this or another trial right away?
– How much time do you want to have to look for other non-PD1-based trials?
– If the TIL trial isn't effective, how much are you worried about the growth of the bigger one during the course of the trial? How long do your doctors think it would normally take for this trial to either show itself as effective in generating a response, or not?
– How much time do you think getting surgery would buy, as far as growth of the other two smaller tumors?
– If the bigger one comes out with surgery, how concerned are you about what kind of trouble the two smaller tumors could cause, and how fast they could cause it?
I'm certain there are other important questions to weight than I can think of. I hope you are able to get to the level of confidence you want in whichever choice you make.
– Kyle
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- May 17, 2016 at 5:05 am
Hi Josh,
I learned that is was normal procedure for them to want to have at least 2 tumors to look at. One would be the "target" tumor throughout the trial for measurements to be done. The other one just needed for the period prior to the first treatment so they could get biopsy material from it, without potentially disturbing the target tumor already under measurement.
Questions for your docs — given that there are 3 tumors present, is it necessary that the larger tumor in the abdomen be the "target" tumor? Or could surgery be done to take that one out, and use one of the remaining smaller tumors as the target for the trial? Is there any reason the smaller tumors wouldn't be sufficient for satisying the entry criteria? Would surgery necessitate a delay for entering the trial, if so how much?
I know this would be your second clinical trial. I hope you get through this decision making process with a course of action you believe in.
– Kyle
-
- May 17, 2016 at 5:05 am
Hi Josh,
I learned that is was normal procedure for them to want to have at least 2 tumors to look at. One would be the "target" tumor throughout the trial for measurements to be done. The other one just needed for the period prior to the first treatment so they could get biopsy material from it, without potentially disturbing the target tumor already under measurement.
Questions for your docs — given that there are 3 tumors present, is it necessary that the larger tumor in the abdomen be the "target" tumor? Or could surgery be done to take that one out, and use one of the remaining smaller tumors as the target for the trial? Is there any reason the smaller tumors wouldn't be sufficient for satisying the entry criteria? Would surgery necessitate a delay for entering the trial, if so how much?
I know this would be your second clinical trial. I hope you get through this decision making process with a course of action you believe in.
– Kyle
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- May 17, 2016 at 12:10 pm
Hi Josh,
lim sorry for your setback. You've been such a great supporter of so many on this board.
My response is totally not based on anything but my own sense of this thing. However, in my mind, wouldn't the removal of the tumors lessen the tumor burdn on whatever therapy you opt to use? Is the clinical trial all or nothing? If they remove two tumors, won't they still have a sample by which to measure? The Hntsman therapy referenced by your dad: Is it s trial or approved therapy? If an approved therapy, can you get meaningful data as to the extent of the succes.
Finally, I'm sure your family wants the best outcome and are offering their advice accordingly. You're fortunate to have so many loving family members participating in some form or fashion in your care as either extended parts of your "research team" or for emotional support. That said, choose the therapy that you believe will give you the best chance for the best outcome.
All the best Josh! Keep us posted!
Stan
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- May 17, 2016 at 12:10 pm
Hi Josh,
lim sorry for your setback. You've been such a great supporter of so many on this board.
My response is totally not based on anything but my own sense of this thing. However, in my mind, wouldn't the removal of the tumors lessen the tumor burdn on whatever therapy you opt to use? Is the clinical trial all or nothing? If they remove two tumors, won't they still have a sample by which to measure? The Hntsman therapy referenced by your dad: Is it s trial or approved therapy? If an approved therapy, can you get meaningful data as to the extent of the succes.
Finally, I'm sure your family wants the best outcome and are offering their advice accordingly. You're fortunate to have so many loving family members participating in some form or fashion in your care as either extended parts of your "research team" or for emotional support. That said, choose the therapy that you believe will give you the best chance for the best outcome.
All the best Josh! Keep us posted!
Stan
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- May 17, 2016 at 12:10 pm
Hi Josh,
lim sorry for your setback. You've been such a great supporter of so many on this board.
My response is totally not based on anything but my own sense of this thing. However, in my mind, wouldn't the removal of the tumors lessen the tumor burdn on whatever therapy you opt to use? Is the clinical trial all or nothing? If they remove two tumors, won't they still have a sample by which to measure? The Hntsman therapy referenced by your dad: Is it s trial or approved therapy? If an approved therapy, can you get meaningful data as to the extent of the succes.
Finally, I'm sure your family wants the best outcome and are offering their advice accordingly. You're fortunate to have so many loving family members participating in some form or fashion in your care as either extended parts of your "research team" or for emotional support. That said, choose the therapy that you believe will give you the best chance for the best outcome.
All the best Josh! Keep us posted!
Stan
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- May 17, 2016 at 5:23 pm
Hi Josh, I have a link to Dr. Robert H.I. Andtbacka from the university of Utah, Huntsman Cancer Institute talking about T-vec in 2014 on Onclive. https://www.youtube.com/watch?v=p_uzBYfujpQ There is more current data and when I find it I will send it your way. Maybe Celeste will have a newer link for you. Best Wishes!!! Ed
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- May 17, 2016 at 5:23 pm
Hi Josh, I have a link to Dr. Robert H.I. Andtbacka from the university of Utah, Huntsman Cancer Institute talking about T-vec in 2014 on Onclive. https://www.youtube.com/watch?v=p_uzBYfujpQ There is more current data and when I find it I will send it your way. Maybe Celeste will have a newer link for you. Best Wishes!!! Ed
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- May 17, 2016 at 5:23 pm
Hi Josh, I have a link to Dr. Robert H.I. Andtbacka from the university of Utah, Huntsman Cancer Institute talking about T-vec in 2014 on Onclive. https://www.youtube.com/watch?v=p_uzBYfujpQ There is more current data and when I find it I will send it your way. Maybe Celeste will have a newer link for you. Best Wishes!!! Ed
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- May 17, 2016 at 5:38 pm
This link is newer Josh!!!! https://www.youtube.com/watch?v=HIK3fLI7Hto
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- May 17, 2016 at 5:38 pm
This link is newer Josh!!!! https://www.youtube.com/watch?v=HIK3fLI7Hto
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- May 17, 2016 at 5:38 pm
This link is newer Josh!!!! https://www.youtube.com/watch?v=HIK3fLI7Hto
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- May 17, 2016 at 6:00 pm
Last link,I promise!!! from 2015, go to the 26min mark and data from T-vec is given in surgery considerations of melanoma. Best wishes!!! Ed https://www.youtube.com/watch?v=YrW4UdkCu8I
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- May 17, 2016 at 6:00 pm
Last link,I promise!!! from 2015, go to the 26min mark and data from T-vec is given in surgery considerations of melanoma. Best wishes!!! Ed https://www.youtube.com/watch?v=YrW4UdkCu8I
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- May 17, 2016 at 6:00 pm
Last link,I promise!!! from 2015, go to the 26min mark and data from T-vec is given in surgery considerations of melanoma. Best wishes!!! Ed https://www.youtube.com/watch?v=YrW4UdkCu8I
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- May 17, 2016 at 6:06 pm
Josh, tough decision–and you'll make the right choice for you. While I don't disagree with the idea of removing the larger tumor, abdominal surgery can be a "big deal" and may set you back several weeks (months?) before being able to start a new trial or treatment.
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- May 17, 2016 at 6:06 pm
Josh, tough decision–and you'll make the right choice for you. While I don't disagree with the idea of removing the larger tumor, abdominal surgery can be a "big deal" and may set you back several weeks (months?) before being able to start a new trial or treatment.
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- May 17, 2016 at 6:06 pm
Josh, tough decision–and you'll make the right choice for you. While I don't disagree with the idea of removing the larger tumor, abdominal surgery can be a "big deal" and may set you back several weeks (months?) before being able to start a new trial or treatment.
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- May 18, 2016 at 12:26 am
Hi Josh. No advice to give, and as always everyone here is filled with great info. I just wanted to say go with your gut instinct on these big decisions. Collect all the info you can and sleep on it. You’ll make the right choice for you, and you have your family’s tremendous support behind you. These decisions ARE tough, and we all feel for you. Keep us updated. -
- May 18, 2016 at 12:26 am
Hi Josh. No advice to give, and as always everyone here is filled with great info. I just wanted to say go with your gut instinct on these big decisions. Collect all the info you can and sleep on it. You’ll make the right choice for you, and you have your family’s tremendous support behind you. These decisions ARE tough, and we all feel for you. Keep us updated. -
- May 18, 2016 at 12:26 am
Hi Josh. No advice to give, and as always everyone here is filled with great info. I just wanted to say go with your gut instinct on these big decisions. Collect all the info you can and sleep on it. You’ll make the right choice for you, and you have your family’s tremendous support behind you. These decisions ARE tough, and we all feel for you. Keep us updated. -
- May 18, 2016 at 1:19 am
Hey Sweetie,
First…easier said than done…but no need to get up in the air until you hear the real plan from the doc. All things pointed out here are things you need answers to and certainly you need clarity on what, if any, surgical remedies the docs propose…but you can't know the plan until you know the plan. Yes, this is the new version of TIL. Yes, usually they want measurable disease to see what happens to that tumor. BUT….I don't know the real answer to any of this. But YOU will after your meeting on Thur. Write down your questions…think about the answers. Then, start weighing your decisions.
I love the idea of intralesional therapy…there's T-VEC, the Coxsackie version, PV-10 (Rose Bengal)…and even others. But you do realize…there has to be an "injectable lesion"….meaning a lesion that can be reached by needle so that it can be injected over the course of the trial or treatment. AND….you leave that lesion in place….it is NOT removed. Sometimes, those treatments/trials want a non-injected comparator lesion as well….so they can judge by-stander effect. While responses to intralesionals are good they are not in the range that anti-PD1 has alone, nor the ipi/nivo combo. That's why lots of researchers are looking at intralesionals in COMBINATION with immunotherapy. There are tons of articles about all of this on my blog. Just use any of those words in the search bubble.
My husband, in sincere and great despair, said to me some years ago, "Dammit! You have trouble thinking about all these treatments, but go have this crap cut out of you all the time like it is nothing!" Meaning….I was very stoic about surgeries, but had a real problem dealing with the limitations, the unknowables, the $$$$$$$$$$$, the travel, the time….that my trial participation would cost me and my family. He was right. Cut the shit out and let's move on was my motto. However, some of us reach a point where…what we have been doing….is no longer working. You've undergone some aggressive treatments and plenty of surgery. Sadly, none have been the winning ticket. You may have to think out of the box on this one. While it seems like a no-brainer to cut the crap out….so far that hasn't been enough. Do not limit your options through mere intuition.
There are family and friends I could not…would not…have made it this far through melanoma neverland without. However, melanoma decisions are not democratic. They are yours. That is a huge burden on you, of course. On the other hand, we have all been through enough of this crap to know….that it is also a gift….to those we love. I could not allow my husband to choose my treatment. The decision had to be mine. Because that is a truth…that we each walk this road alone in a certain sense. And…because….there is no way I would burden anyone other than myself with the thought that an untoward outcome was due to their influence. Just my take on things. But, perhaps….while not disregarding the input of those we respect and love….it might be best to let it be known…before decisions are made….that while I very much want to hear your opinion and value your support…this is a decision that I alone can make and be responsible for.
Take it for what you will. Find out what your docs really plan on both your options. Ask more questions. This is a pretty good place to think out loud. And…while we each walk our path alone….it takes a village….and we are here. love, c
-
- May 18, 2016 at 1:19 am
Hey Sweetie,
First…easier said than done…but no need to get up in the air until you hear the real plan from the doc. All things pointed out here are things you need answers to and certainly you need clarity on what, if any, surgical remedies the docs propose…but you can't know the plan until you know the plan. Yes, this is the new version of TIL. Yes, usually they want measurable disease to see what happens to that tumor. BUT….I don't know the real answer to any of this. But YOU will after your meeting on Thur. Write down your questions…think about the answers. Then, start weighing your decisions.
I love the idea of intralesional therapy…there's T-VEC, the Coxsackie version, PV-10 (Rose Bengal)…and even others. But you do realize…there has to be an "injectable lesion"….meaning a lesion that can be reached by needle so that it can be injected over the course of the trial or treatment. AND….you leave that lesion in place….it is NOT removed. Sometimes, those treatments/trials want a non-injected comparator lesion as well….so they can judge by-stander effect. While responses to intralesionals are good they are not in the range that anti-PD1 has alone, nor the ipi/nivo combo. That's why lots of researchers are looking at intralesionals in COMBINATION with immunotherapy. There are tons of articles about all of this on my blog. Just use any of those words in the search bubble.
My husband, in sincere and great despair, said to me some years ago, "Dammit! You have trouble thinking about all these treatments, but go have this crap cut out of you all the time like it is nothing!" Meaning….I was very stoic about surgeries, but had a real problem dealing with the limitations, the unknowables, the $$$$$$$$$$$, the travel, the time….that my trial participation would cost me and my family. He was right. Cut the shit out and let's move on was my motto. However, some of us reach a point where…what we have been doing….is no longer working. You've undergone some aggressive treatments and plenty of surgery. Sadly, none have been the winning ticket. You may have to think out of the box on this one. While it seems like a no-brainer to cut the crap out….so far that hasn't been enough. Do not limit your options through mere intuition.
There are family and friends I could not…would not…have made it this far through melanoma neverland without. However, melanoma decisions are not democratic. They are yours. That is a huge burden on you, of course. On the other hand, we have all been through enough of this crap to know….that it is also a gift….to those we love. I could not allow my husband to choose my treatment. The decision had to be mine. Because that is a truth…that we each walk this road alone in a certain sense. And…because….there is no way I would burden anyone other than myself with the thought that an untoward outcome was due to their influence. Just my take on things. But, perhaps….while not disregarding the input of those we respect and love….it might be best to let it be known…before decisions are made….that while I very much want to hear your opinion and value your support…this is a decision that I alone can make and be responsible for.
Take it for what you will. Find out what your docs really plan on both your options. Ask more questions. This is a pretty good place to think out loud. And…while we each walk our path alone….it takes a village….and we are here. love, c
-
- May 18, 2016 at 1:19 am
Hey Sweetie,
First…easier said than done…but no need to get up in the air until you hear the real plan from the doc. All things pointed out here are things you need answers to and certainly you need clarity on what, if any, surgical remedies the docs propose…but you can't know the plan until you know the plan. Yes, this is the new version of TIL. Yes, usually they want measurable disease to see what happens to that tumor. BUT….I don't know the real answer to any of this. But YOU will after your meeting on Thur. Write down your questions…think about the answers. Then, start weighing your decisions.
I love the idea of intralesional therapy…there's T-VEC, the Coxsackie version, PV-10 (Rose Bengal)…and even others. But you do realize…there has to be an "injectable lesion"….meaning a lesion that can be reached by needle so that it can be injected over the course of the trial or treatment. AND….you leave that lesion in place….it is NOT removed. Sometimes, those treatments/trials want a non-injected comparator lesion as well….so they can judge by-stander effect. While responses to intralesionals are good they are not in the range that anti-PD1 has alone, nor the ipi/nivo combo. That's why lots of researchers are looking at intralesionals in COMBINATION with immunotherapy. There are tons of articles about all of this on my blog. Just use any of those words in the search bubble.
My husband, in sincere and great despair, said to me some years ago, "Dammit! You have trouble thinking about all these treatments, but go have this crap cut out of you all the time like it is nothing!" Meaning….I was very stoic about surgeries, but had a real problem dealing with the limitations, the unknowables, the $$$$$$$$$$$, the travel, the time….that my trial participation would cost me and my family. He was right. Cut the shit out and let's move on was my motto. However, some of us reach a point where…what we have been doing….is no longer working. You've undergone some aggressive treatments and plenty of surgery. Sadly, none have been the winning ticket. You may have to think out of the box on this one. While it seems like a no-brainer to cut the crap out….so far that hasn't been enough. Do not limit your options through mere intuition.
There are family and friends I could not…would not…have made it this far through melanoma neverland without. However, melanoma decisions are not democratic. They are yours. That is a huge burden on you, of course. On the other hand, we have all been through enough of this crap to know….that it is also a gift….to those we love. I could not allow my husband to choose my treatment. The decision had to be mine. Because that is a truth…that we each walk this road alone in a certain sense. And…because….there is no way I would burden anyone other than myself with the thought that an untoward outcome was due to their influence. Just my take on things. But, perhaps….while not disregarding the input of those we respect and love….it might be best to let it be known…before decisions are made….that while I very much want to hear your opinion and value your support…this is a decision that I alone can make and be responsible for.
Take it for what you will. Find out what your docs really plan on both your options. Ask more questions. This is a pretty good place to think out loud. And…while we each walk our path alone….it takes a village….and we are here. love, c
-
- May 18, 2016 at 8:12 pm
Dear Celeste….you are a calming voice in the storm for so many of us. I have dug through your blog and looked ateverything I could which at times It really created a feeling of despairit more of a tougher decision. I just remember few years back being at an MRF Patient Symposium where the oncologists said that resection is always best. Now I know things have changed significantly over the past couple of years and treatments have advanced. I'm still so disappointed that PD-1 didn't work for me. It really created a feeling of despair in me. I've also heard of this version of TIL being a last resort option. Though I know that's not true, it still lingers in back of my mind. It's all overwhelming but you're right…it does take a village and I know that this village has been a blessing. I'll update tomorrow after I see what this oncologist thinks…
Thanks for always being there!!
Love
Josh
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- May 18, 2016 at 8:12 pm
Dear Celeste….you are a calming voice in the storm for so many of us. I have dug through your blog and looked ateverything I could which at times It really created a feeling of despairit more of a tougher decision. I just remember few years back being at an MRF Patient Symposium where the oncologists said that resection is always best. Now I know things have changed significantly over the past couple of years and treatments have advanced. I'm still so disappointed that PD-1 didn't work for me. It really created a feeling of despair in me. I've also heard of this version of TIL being a last resort option. Though I know that's not true, it still lingers in back of my mind. It's all overwhelming but you're right…it does take a village and I know that this village has been a blessing. I'll update tomorrow after I see what this oncologist thinks…
Thanks for always being there!!
Love
Josh
-
- May 18, 2016 at 8:12 pm
Dear Celeste….you are a calming voice in the storm for so many of us. I have dug through your blog and looked ateverything I could which at times It really created a feeling of despairit more of a tougher decision. I just remember few years back being at an MRF Patient Symposium where the oncologists said that resection is always best. Now I know things have changed significantly over the past couple of years and treatments have advanced. I'm still so disappointed that PD-1 didn't work for me. It really created a feeling of despair in me. I've also heard of this version of TIL being a last resort option. Though I know that's not true, it still lingers in back of my mind. It's all overwhelming but you're right…it does take a village and I know that this village has been a blessing. I'll update tomorrow after I see what this oncologist thinks…
Thanks for always being there!!
Love
Josh
-
- May 18, 2016 at 6:58 pm
Josh,
I'm sorry you are going through this. I hope you hear a good plan of attack from your doctors. I think I told you after IL-2 my husband recurred with 3 intestinal tumors about a year later. They resected all 3 but probably because the one was obstructing the bowel. I don't know what to tell you. If that tumor is causing a real problem and you can't afford to wait that is normally when the doctors suggest getting it out. I know if it were my husband he just wanted it all removed but everyone's situation is different. Surgery is also scary, may not solve the problem. I just hope for you that whatever decision you make it works out so you can just get a break from this.
Rebecca
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- May 18, 2016 at 6:58 pm
Josh,
I'm sorry you are going through this. I hope you hear a good plan of attack from your doctors. I think I told you after IL-2 my husband recurred with 3 intestinal tumors about a year later. They resected all 3 but probably because the one was obstructing the bowel. I don't know what to tell you. If that tumor is causing a real problem and you can't afford to wait that is normally when the doctors suggest getting it out. I know if it were my husband he just wanted it all removed but everyone's situation is different. Surgery is also scary, may not solve the problem. I just hope for you that whatever decision you make it works out so you can just get a break from this.
Rebecca
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- May 18, 2016 at 6:58 pm
Josh,
I'm sorry you are going through this. I hope you hear a good plan of attack from your doctors. I think I told you after IL-2 my husband recurred with 3 intestinal tumors about a year later. They resected all 3 but probably because the one was obstructing the bowel. I don't know what to tell you. If that tumor is causing a real problem and you can't afford to wait that is normally when the doctors suggest getting it out. I know if it were my husband he just wanted it all removed but everyone's situation is different. Surgery is also scary, may not solve the problem. I just hope for you that whatever decision you make it works out so you can just get a break from this.
Rebecca
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- May 18, 2016 at 8:01 pm
Hi Josh,
I certainly have no wisdom to add to the very wise advice given to you already. I just wanted to wish you well on your appointment tomorrow. For me, making the decision is the hardest part. I hope you arrive at a treatment approach that you are comfortable with. And that the treatment is hugely successful.
Best
Maggie
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- May 18, 2016 at 8:01 pm
Hi Josh,
I certainly have no wisdom to add to the very wise advice given to you already. I just wanted to wish you well on your appointment tomorrow. For me, making the decision is the hardest part. I hope you arrive at a treatment approach that you are comfortable with. And that the treatment is hugely successful.
Best
Maggie
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- May 18, 2016 at 8:01 pm
Hi Josh,
I certainly have no wisdom to add to the very wise advice given to you already. I just wanted to wish you well on your appointment tomorrow. For me, making the decision is the hardest part. I hope you arrive at a treatment approach that you are comfortable with. And that the treatment is hugely successful.
Best
Maggie
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- May 18, 2016 at 8:39 pm
Hi Josh,
Wishing you well on your appointment tomorrow. I can understanding the feeling of being overwhelmed by options and information. Frankly, I do tend to trust my specialist and default to his judgment overall. I also wanted to remind you to inquire about radiation in your quest to cut or not to cut. I suffer from similar, very large tumors. For me a small one is 5cm. I had three larger, roughly 9cm tumors treated (destroyed) with radiation. I have a cluster of even larger ones that is under consideration. There are potential side effects as with anything. I have what is probably permanent lung damage from the radiation on one of them. But getting rid of a huge sub-Q tumor that was making my life miserable was a decent trade-off. Also, I believe I may be benefiting from the combo of immunotherapy and radiation which has some synergistic effect. Another unintended consequence for me was that destroying the subcutaneous tumors also virtually eliminated any chance of T-vec type treatments as they need accessible tumors to inject. The decisions are tough, there simply are no easy answers to any of this. Best to you!
Gary
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- May 18, 2016 at 8:39 pm
Hi Josh,
Wishing you well on your appointment tomorrow. I can understanding the feeling of being overwhelmed by options and information. Frankly, I do tend to trust my specialist and default to his judgment overall. I also wanted to remind you to inquire about radiation in your quest to cut or not to cut. I suffer from similar, very large tumors. For me a small one is 5cm. I had three larger, roughly 9cm tumors treated (destroyed) with radiation. I have a cluster of even larger ones that is under consideration. There are potential side effects as with anything. I have what is probably permanent lung damage from the radiation on one of them. But getting rid of a huge sub-Q tumor that was making my life miserable was a decent trade-off. Also, I believe I may be benefiting from the combo of immunotherapy and radiation which has some synergistic effect. Another unintended consequence for me was that destroying the subcutaneous tumors also virtually eliminated any chance of T-vec type treatments as they need accessible tumors to inject. The decisions are tough, there simply are no easy answers to any of this. Best to you!
Gary
-
- May 18, 2016 at 8:39 pm
Hi Josh,
Wishing you well on your appointment tomorrow. I can understanding the feeling of being overwhelmed by options and information. Frankly, I do tend to trust my specialist and default to his judgment overall. I also wanted to remind you to inquire about radiation in your quest to cut or not to cut. I suffer from similar, very large tumors. For me a small one is 5cm. I had three larger, roughly 9cm tumors treated (destroyed) with radiation. I have a cluster of even larger ones that is under consideration. There are potential side effects as with anything. I have what is probably permanent lung damage from the radiation on one of them. But getting rid of a huge sub-Q tumor that was making my life miserable was a decent trade-off. Also, I believe I may be benefiting from the combo of immunotherapy and radiation which has some synergistic effect. Another unintended consequence for me was that destroying the subcutaneous tumors also virtually eliminated any chance of T-vec type treatments as they need accessible tumors to inject. The decisions are tough, there simply are no easy answers to any of this. Best to you!
Gary
-
- May 19, 2016 at 11:14 am
Hi Josh-
No doubt some tough decisions for you….our disease always seems more complex as there is often not just one way to go, or any wrong answer. I know I felt that way earleir this year when I was deciding what course of treatment to pursue. I ultimately made a decision and only time will tell if i made the right one….and even with time Il'l never really know…..so its one foot in front of the other i guess….and continue hope for the future.
I guess I would be feeling the same way about haveing the surgery, and would lean towards that, but so many things are changing, lets see what you hear today.
I want to wish you well today when you see your ONC. We will all be here waiting to hear the results of your appt, and what path you choose. I hope that whatever your decision is, that this one will do the trick and you can get some peace of mind.
For now, sending lots of good wishes, and will look for your next post .
Best,
Jenny
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- May 19, 2016 at 11:14 am
Hi Josh-
No doubt some tough decisions for you….our disease always seems more complex as there is often not just one way to go, or any wrong answer. I know I felt that way earleir this year when I was deciding what course of treatment to pursue. I ultimately made a decision and only time will tell if i made the right one….and even with time Il'l never really know…..so its one foot in front of the other i guess….and continue hope for the future.
I guess I would be feeling the same way about haveing the surgery, and would lean towards that, but so many things are changing, lets see what you hear today.
I want to wish you well today when you see your ONC. We will all be here waiting to hear the results of your appt, and what path you choose. I hope that whatever your decision is, that this one will do the trick and you can get some peace of mind.
For now, sending lots of good wishes, and will look for your next post .
Best,
Jenny
-
- May 19, 2016 at 11:14 am
Hi Josh-
No doubt some tough decisions for you….our disease always seems more complex as there is often not just one way to go, or any wrong answer. I know I felt that way earleir this year when I was deciding what course of treatment to pursue. I ultimately made a decision and only time will tell if i made the right one….and even with time Il'l never really know…..so its one foot in front of the other i guess….and continue hope for the future.
I guess I would be feeling the same way about haveing the surgery, and would lean towards that, but so many things are changing, lets see what you hear today.
I want to wish you well today when you see your ONC. We will all be here waiting to hear the results of your appt, and what path you choose. I hope that whatever your decision is, that this one will do the trick and you can get some peace of mind.
For now, sending lots of good wishes, and will look for your next post .
Best,
Jenny
-
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