› Forums › General Melanoma Community › Latest scan results
- This topic has 42 replies, 6 voices, and was last updated 9 years, 6 months ago by
Bubbles.
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- September 2, 2016 at 11:45 am
Two months ago I had my regularly scheduled PET/CT and the discovered a hot spot. At that time it was 10mm by 5mm with SUV max of 3.2. We opted to do nothing and re-scan in two months. The re-scan shows the hot spot again. This time it measures 13mm by 12mm with SUV max of 6.2. The are calling it a nodule or lymph node in the perirenal fat inferior to the right kidney. My onc was very concerned with this and started our discussion with the dreaded, "sorry to have to tell you this, but…." I am curious about what people on this board think about it. I get the feeling that it is the beast making a third appearance in my life, but I never like to believe that until it is actually proven.
My onc did say it is for sure time to do something about the nodule/lymph node. She told me that I have options. The first option is have it surgically removed. It sounds like the removal should be a pretty simple procedure. The other option discussed was Keytruda. I have read tons of stories on here about the various immune therapy drugs and all the success people are having with them, I am really excited about them and think they provide so much hope for the future. Where I am struggling here is does Keytruda make sense when there is only one spot that can easily be surgically resected. Anybody have an insight or experience to share that might help with my decision?
Thank you for taking the time to read this.
Brad
- Replies
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- September 2, 2016 at 1:03 pm
Hey Brad,
It's hard to think leaving melanoma within could be a good idea isn't it?? And…it's not…in the sense that studies show the lowest tumor burden gives us the best response and therefore surgery certainly helps do that. However, if I understand your condition correctly, if you remore this spot you would be NED? And therefore, elgible only for ipi as adjunctive treatment. So there lies the conundrum. I was lucky enough to participate in the NED arm of a nivo/opdivo trial (keytruda and opdivo are both anti-PD1 products with similar response rates and side effect profiles) back in 2010 for 2 1/2 years and I'm still here, and NED, as are many of my fellow ratties. Additionally, ipi has been found to be very helpful as adjuvant as well. I hope that anti-PD1 will be FDA approved as adjuvant soon…but my crystal ball has no date for that! So…I guess it will boil down to your tolerance for these choices. I'm sure I have helped you not in the least. But, if you have recurred three times, perhaps it is time to get rid of those pesky melanoma cells floating about, as well as the hot clump, via firing up your immune system with anti-PD1. I wish you well with whatever you choose! Celeste
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- September 2, 2016 at 1:03 pm
Hey Brad,
It's hard to think leaving melanoma within could be a good idea isn't it?? And…it's not…in the sense that studies show the lowest tumor burden gives us the best response and therefore surgery certainly helps do that. However, if I understand your condition correctly, if you remore this spot you would be NED? And therefore, elgible only for ipi as adjunctive treatment. So there lies the conundrum. I was lucky enough to participate in the NED arm of a nivo/opdivo trial (keytruda and opdivo are both anti-PD1 products with similar response rates and side effect profiles) back in 2010 for 2 1/2 years and I'm still here, and NED, as are many of my fellow ratties. Additionally, ipi has been found to be very helpful as adjuvant as well. I hope that anti-PD1 will be FDA approved as adjuvant soon…but my crystal ball has no date for that! So…I guess it will boil down to your tolerance for these choices. I'm sure I have helped you not in the least. But, if you have recurred three times, perhaps it is time to get rid of those pesky melanoma cells floating about, as well as the hot clump, via firing up your immune system with anti-PD1. I wish you well with whatever you choose! Celeste
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- September 2, 2016 at 1:03 pm
Hey Brad,
It's hard to think leaving melanoma within could be a good idea isn't it?? And…it's not…in the sense that studies show the lowest tumor burden gives us the best response and therefore surgery certainly helps do that. However, if I understand your condition correctly, if you remore this spot you would be NED? And therefore, elgible only for ipi as adjunctive treatment. So there lies the conundrum. I was lucky enough to participate in the NED arm of a nivo/opdivo trial (keytruda and opdivo are both anti-PD1 products with similar response rates and side effect profiles) back in 2010 for 2 1/2 years and I'm still here, and NED, as are many of my fellow ratties. Additionally, ipi has been found to be very helpful as adjuvant as well. I hope that anti-PD1 will be FDA approved as adjuvant soon…but my crystal ball has no date for that! So…I guess it will boil down to your tolerance for these choices. I'm sure I have helped you not in the least. But, if you have recurred three times, perhaps it is time to get rid of those pesky melanoma cells floating about, as well as the hot clump, via firing up your immune system with anti-PD1. I wish you well with whatever you choose! Celeste
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- September 2, 2016 at 1:22 pm
Celeste,
You have helped me a ton over the past several months since I discovered this message board. You understand my condition perfectly. Have surgery to remove it and be NED or leave it in and start Keytruda to see what happens. My mind has had to come to grips with some weird stuff since my initial diagnosis. Leaving suspected cancer in is by far the strangest concept I have had to process.
What I really want is one of those crystal balls you mentioned in your response. Think of how much easier it would be to make decisions.
Thanks, Brad
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- September 2, 2016 at 1:22 pm
Celeste,
You have helped me a ton over the past several months since I discovered this message board. You understand my condition perfectly. Have surgery to remove it and be NED or leave it in and start Keytruda to see what happens. My mind has had to come to grips with some weird stuff since my initial diagnosis. Leaving suspected cancer in is by far the strangest concept I have had to process.
What I really want is one of those crystal balls you mentioned in your response. Think of how much easier it would be to make decisions.
Thanks, Brad
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- September 2, 2016 at 1:22 pm
Celeste,
You have helped me a ton over the past several months since I discovered this message board. You understand my condition perfectly. Have surgery to remove it and be NED or leave it in and start Keytruda to see what happens. My mind has had to come to grips with some weird stuff since my initial diagnosis. Leaving suspected cancer in is by far the strangest concept I have had to process.
What I really want is one of those crystal balls you mentioned in your response. Think of how much easier it would be to make decisions.
Thanks, Brad
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- September 2, 2016 at 2:07 pm
Hi Brad, if you start on the Pd-1 drug and it works on the tumor that they can see on scans, then you don't need the surgery and your immune system will be geared up to find any other melanoma that might be in your body. On the other hand if you start the Pd-1 drug and it doesn't work then they can use the surgery options and follow you closely with scans. One other thing to consider is life style, it takes time to go in for treatments and Oncology appointments and the side effects can be difficult for some to handle. Best of luck with your decision making process!!!Ed
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- September 2, 2016 at 2:07 pm
Hi Brad, if you start on the Pd-1 drug and it works on the tumor that they can see on scans, then you don't need the surgery and your immune system will be geared up to find any other melanoma that might be in your body. On the other hand if you start the Pd-1 drug and it doesn't work then they can use the surgery options and follow you closely with scans. One other thing to consider is life style, it takes time to go in for treatments and Oncology appointments and the side effects can be difficult for some to handle. Best of luck with your decision making process!!!Ed
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- September 2, 2016 at 2:07 pm
Hi Brad, if you start on the Pd-1 drug and it works on the tumor that they can see on scans, then you don't need the surgery and your immune system will be geared up to find any other melanoma that might be in your body. On the other hand if you start the Pd-1 drug and it doesn't work then they can use the surgery options and follow you closely with scans. One other thing to consider is life style, it takes time to go in for treatments and Oncology appointments and the side effects can be difficult for some to handle. Best of luck with your decision making process!!!Ed
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- September 2, 2016 at 3:24 pm
Hey Brad,
Sorry about your latest scan. We are in a very similar situation. I caught my latest bump in the road with a 2.0 cm and 1.5 cm lesion and a SUV of 6.6 and 5.5. I saw Dr. Weber and he felt this was in the gray area as to whether or not it is metastatic disease. Probably more likely it is than isn't. Due to several reasons I also elected the uncomfortable decison to let it be and rescan again in 8 weeks. There's a gazillion variables going through my decision process if the next scans confirm disease. Mine aren't in a location as easy to resect as your's are but even if it was in my mind this is a systemic war now. I've cut it out three times and three times it will have come back. You can win some battles with surgery but the war is one with systemic treatments.
Here's my thread from a few weeks ago in case you didn't see it.
Brian
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- September 2, 2016 at 3:24 pm
Hey Brad,
Sorry about your latest scan. We are in a very similar situation. I caught my latest bump in the road with a 2.0 cm and 1.5 cm lesion and a SUV of 6.6 and 5.5. I saw Dr. Weber and he felt this was in the gray area as to whether or not it is metastatic disease. Probably more likely it is than isn't. Due to several reasons I also elected the uncomfortable decison to let it be and rescan again in 8 weeks. There's a gazillion variables going through my decision process if the next scans confirm disease. Mine aren't in a location as easy to resect as your's are but even if it was in my mind this is a systemic war now. I've cut it out three times and three times it will have come back. You can win some battles with surgery but the war is one with systemic treatments.
Here's my thread from a few weeks ago in case you didn't see it.
Brian
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- September 2, 2016 at 3:24 pm
Hey Brad,
Sorry about your latest scan. We are in a very similar situation. I caught my latest bump in the road with a 2.0 cm and 1.5 cm lesion and a SUV of 6.6 and 5.5. I saw Dr. Weber and he felt this was in the gray area as to whether or not it is metastatic disease. Probably more likely it is than isn't. Due to several reasons I also elected the uncomfortable decison to let it be and rescan again in 8 weeks. There's a gazillion variables going through my decision process if the next scans confirm disease. Mine aren't in a location as easy to resect as your's are but even if it was in my mind this is a systemic war now. I've cut it out three times and three times it will have come back. You can win some battles with surgery but the war is one with systemic treatments.
Here's my thread from a few weeks ago in case you didn't see it.
Brian
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- September 3, 2016 at 10:50 am
Hi brian
I had been wondering what your SUV was on your last scan. Did you decide whether to go back in ipi/nivo combo or just nivo. Or did you decide to do the trial with the other nivo combination where you had to travel?
in any case I hope the higher SUV was just due to inflammation but am worried for you for the size of the lesion. ( still much smaller than my 3 cm stable ( so far) lesion so probably no big deal
my doctor said that my last SUV of around 3.2 was almost within 'normal' but we all know it's different when there's mel lurking around.
I was so sorry to hear that you had to shelve your plans to get back to your normal life as I have recently done so and would love it to be the same for us all here. Knowing you are with doctor Weber would make me supremely confident if I were you. What an amazing man. I have watched everything of his I can find. Just so great and common sense.
Keep us updated and hope you zap that lesion soon
anne-Louise
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- September 3, 2016 at 10:50 am
Hi brian
I had been wondering what your SUV was on your last scan. Did you decide whether to go back in ipi/nivo combo or just nivo. Or did you decide to do the trial with the other nivo combination where you had to travel?
in any case I hope the higher SUV was just due to inflammation but am worried for you for the size of the lesion. ( still much smaller than my 3 cm stable ( so far) lesion so probably no big deal
my doctor said that my last SUV of around 3.2 was almost within 'normal' but we all know it's different when there's mel lurking around.
I was so sorry to hear that you had to shelve your plans to get back to your normal life as I have recently done so and would love it to be the same for us all here. Knowing you are with doctor Weber would make me supremely confident if I were you. What an amazing man. I have watched everything of his I can find. Just so great and common sense.
Keep us updated and hope you zap that lesion soon
anne-Louise
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- September 4, 2016 at 2:48 pm
Thanks for the shout out anne-Louise. I'm hanging in there. For a couple reasons, one of which is probably because I'm still in denial, I've decided to hold off on treatment decisions and rescan again at the end of the month. I'm still holding out hope this is just inflamation but realize more than likely it is new disease. I've narrowed my treatment options down to about 4 or 5 what I feel are good options. Isn't that an amazing sentence in and of itself. Just a few years ago I'd be lucky to have any good treatment options at this point. I'm the kind that grinds and grinds over the decision and this one will be no different if it comes to that.
Glad to hear you are moving back to a "normal" post melanoma life. I hope you thoroughly enjoy it.
Brian
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- September 4, 2016 at 2:48 pm
Thanks for the shout out anne-Louise. I'm hanging in there. For a couple reasons, one of which is probably because I'm still in denial, I've decided to hold off on treatment decisions and rescan again at the end of the month. I'm still holding out hope this is just inflamation but realize more than likely it is new disease. I've narrowed my treatment options down to about 4 or 5 what I feel are good options. Isn't that an amazing sentence in and of itself. Just a few years ago I'd be lucky to have any good treatment options at this point. I'm the kind that grinds and grinds over the decision and this one will be no different if it comes to that.
Glad to hear you are moving back to a "normal" post melanoma life. I hope you thoroughly enjoy it.
Brian
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- September 4, 2016 at 2:48 pm
Thanks for the shout out anne-Louise. I'm hanging in there. For a couple reasons, one of which is probably because I'm still in denial, I've decided to hold off on treatment decisions and rescan again at the end of the month. I'm still holding out hope this is just inflamation but realize more than likely it is new disease. I've narrowed my treatment options down to about 4 or 5 what I feel are good options. Isn't that an amazing sentence in and of itself. Just a few years ago I'd be lucky to have any good treatment options at this point. I'm the kind that grinds and grinds over the decision and this one will be no different if it comes to that.
Glad to hear you are moving back to a "normal" post melanoma life. I hope you thoroughly enjoy it.
Brian
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- September 5, 2016 at 8:04 pm
I've been wondering, as well, Brian. Re-scanning isn't a bad thing. Will be keeping fingers and toes crossed that you have just been dealing with ditzel-ville!!! That's what my husband calls all the incidental stuff always found on scans. So very glad that you do have options should you need them. Hang in there and keep us posted!! Celeste
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- September 5, 2016 at 8:04 pm
I've been wondering, as well, Brian. Re-scanning isn't a bad thing. Will be keeping fingers and toes crossed that you have just been dealing with ditzel-ville!!! That's what my husband calls all the incidental stuff always found on scans. So very glad that you do have options should you need them. Hang in there and keep us posted!! Celeste
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- September 5, 2016 at 8:04 pm
I've been wondering, as well, Brian. Re-scanning isn't a bad thing. Will be keeping fingers and toes crossed that you have just been dealing with ditzel-ville!!! That's what my husband calls all the incidental stuff always found on scans. So very glad that you do have options should you need them. Hang in there and keep us posted!! Celeste
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- September 3, 2016 at 10:50 am
Hi brian
I had been wondering what your SUV was on your last scan. Did you decide whether to go back in ipi/nivo combo or just nivo. Or did you decide to do the trial with the other nivo combination where you had to travel?
in any case I hope the higher SUV was just due to inflammation but am worried for you for the size of the lesion. ( still much smaller than my 3 cm stable ( so far) lesion so probably no big deal
my doctor said that my last SUV of around 3.2 was almost within 'normal' but we all know it's different when there's mel lurking around.
I was so sorry to hear that you had to shelve your plans to get back to your normal life as I have recently done so and would love it to be the same for us all here. Knowing you are with doctor Weber would make me supremely confident if I were you. What an amazing man. I have watched everything of his I can find. Just so great and common sense.
Keep us updated and hope you zap that lesion soon
anne-Louise
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- September 2, 2016 at 6:23 pm
Hi Brad,
I'm with the others here. Surgery is just a short-term fix. A systemic approach, especially while disease is limited could teach your immune system to go after these melanoma cells whenever, and wherever they crop up. If you have the chance to do anti PD-1 now, that is what I would do. Best in the battle.
Gary
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- September 2, 2016 at 6:23 pm
Hi Brad,
I'm with the others here. Surgery is just a short-term fix. A systemic approach, especially while disease is limited could teach your immune system to go after these melanoma cells whenever, and wherever they crop up. If you have the chance to do anti PD-1 now, that is what I would do. Best in the battle.
Gary
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- September 2, 2016 at 6:23 pm
Hi Brad,
I'm with the others here. Surgery is just a short-term fix. A systemic approach, especially while disease is limited could teach your immune system to go after these melanoma cells whenever, and wherever they crop up. If you have the chance to do anti PD-1 now, that is what I would do. Best in the battle.
Gary
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- September 2, 2016 at 7:20 pm
Brad,
FYI, I have a grapefruit sized mass engulfing almost my entire spleen. Yet looking at radiation, or surgery, I am seeing another round of potential unintended consequences. I'm on anti-PD-1 long term. Its worked at destroying the smaller tumors so far, but my big bad-boy has proven tough, yet I still believe going the systemic treatment route is the best I can do unless fate forces my hand. You nailed it. We can win battles, but what you want is to win the war.
Gary
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- September 2, 2016 at 7:20 pm
Brad,
FYI, I have a grapefruit sized mass engulfing almost my entire spleen. Yet looking at radiation, or surgery, I am seeing another round of potential unintended consequences. I'm on anti-PD-1 long term. Its worked at destroying the smaller tumors so far, but my big bad-boy has proven tough, yet I still believe going the systemic treatment route is the best I can do unless fate forces my hand. You nailed it. We can win battles, but what you want is to win the war.
Gary
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- September 2, 2016 at 7:20 pm
Brad,
FYI, I have a grapefruit sized mass engulfing almost my entire spleen. Yet looking at radiation, or surgery, I am seeing another round of potential unintended consequences. I'm on anti-PD-1 long term. Its worked at destroying the smaller tumors so far, but my big bad-boy has proven tough, yet I still believe going the systemic treatment route is the best I can do unless fate forces my hand. You nailed it. We can win battles, but what you want is to win the war.
Gary
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- September 2, 2016 at 9:16 pm
Gary,
Have you read Laura's story before? I think "sweetaugust" or something like that is her username. Thought you might find her story encouraging. It sounds similar to your's in that she had a good response everywhere except one big tumor. It continued to grow but eventually the tumor basically imploded and melted away.
Loved your responses on the Stotes thread. Really got me thinking about a couple things as I go forward.
Brian
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- September 2, 2016 at 11:58 pm
Thanks Brian, I really enjoy your posts as well. I did see Laura's large tumor did respond, to what appears to be pembro after long term treatment. That's what I'm shooting for. At least it appears my mass has stabilized, and on the scan, at the center it's looking darker than surrounding tissue. It may be dying off as well.
Gary
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- September 2, 2016 at 11:58 pm
Thanks Brian, I really enjoy your posts as well. I did see Laura's large tumor did respond, to what appears to be pembro after long term treatment. That's what I'm shooting for. At least it appears my mass has stabilized, and on the scan, at the center it's looking darker than surrounding tissue. It may be dying off as well.
Gary
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- September 2, 2016 at 11:58 pm
Thanks Brian, I really enjoy your posts as well. I did see Laura's large tumor did respond, to what appears to be pembro after long term treatment. That's what I'm shooting for. At least it appears my mass has stabilized, and on the scan, at the center it's looking darker than surrounding tissue. It may be dying off as well.
Gary
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- September 2, 2016 at 9:16 pm
Gary,
Have you read Laura's story before? I think "sweetaugust" or something like that is her username. Thought you might find her story encouraging. It sounds similar to your's in that she had a good response everywhere except one big tumor. It continued to grow but eventually the tumor basically imploded and melted away.
Loved your responses on the Stotes thread. Really got me thinking about a couple things as I go forward.
Brian
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- September 2, 2016 at 9:16 pm
Gary,
Have you read Laura's story before? I think "sweetaugust" or something like that is her username. Thought you might find her story encouraging. It sounds similar to your's in that she had a good response everywhere except one big tumor. It continued to grow but eventually the tumor basically imploded and melted away.
Loved your responses on the Stotes thread. Really got me thinking about a couple things as I go forward.
Brian
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