› Forums › General Melanoma Community › Tumor Pain
- This topic has 15 replies, 4 voices, and was last updated 8 years, 6 months ago by
Tracy Seattle.
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- October 10, 2015 at 6:04 am
My tumor is in my clavicle lymph nodes. I have just finished a 2 year trial of nivolumab followed by 4 courses of ipi. At one point in the trial I was considered "complete response" due to tumor shrinkage. Then the tumor grew bigger. My last scan showed about the same size but necrosis in the center of the tumor. My tumor is very easy to feel and see as it is just above my collar bone. In the past couple of days it feels like it has swollen up a bit and is sensitive. My shoulder and scalen muscles in my neck are also extremely tight and tend to push the tumor up when they get tight. Wondering if anyone out there can actually feel their tumor and ever has these kinds of sensations. I hope this thing isn't try to battle back again!!
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- October 10, 2015 at 1:11 pm
Yes. I have one in my left collar. It is kind of weird. When it first showed up they wouldn't believe me that it was overnight. Suddenly I just had this huge swelling mass and it also swelled up my neck. Then after a few days it shrank down to just the collar. Since the enormous one in my shoulder is only a few centimeters away I figured it travelled from there.
Occasionaly every couple months I think it is swelling up growing because it seems bigger and hurts. Like it's trying to push through my skin. Otherwise it is usually rather flat. I didn't make the connection the muscles could be pushing it up. Maybe that's why the August scan showed it smaller than April. It's around 4 cm by something.
Artie
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- October 10, 2015 at 7:28 pm
Interesting. I will let you know what happens. May have to do another scan. Also, they put my port line in right next to the tumor. I have no idea why and questioned them before they put it in. Just met with the surgeon regarding doing TIL treatment and having the tumor removed for the TIL. He said the location of the port line was a little tricky. I am also wondering if it is swelling up and rubbing against that port line and making it sensitve as well.
On a side note, I remember meeting with my doc right after my port was installed. She said, why did they put it there? I said, I don't know, they weren't taking directions from me that day. Maybe you should have instructed them!! LOL. I have to say, you have to pay attention and be on your toes in the medical system.
Still very achy to gently touch today. Doesn't let your mind get very far from thinking about it!!
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- October 10, 2015 at 7:28 pm
Interesting. I will let you know what happens. May have to do another scan. Also, they put my port line in right next to the tumor. I have no idea why and questioned them before they put it in. Just met with the surgeon regarding doing TIL treatment and having the tumor removed for the TIL. He said the location of the port line was a little tricky. I am also wondering if it is swelling up and rubbing against that port line and making it sensitve as well.
On a side note, I remember meeting with my doc right after my port was installed. She said, why did they put it there? I said, I don't know, they weren't taking directions from me that day. Maybe you should have instructed them!! LOL. I have to say, you have to pay attention and be on your toes in the medical system.
Still very achy to gently touch today. Doesn't let your mind get very far from thinking about it!!
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- October 10, 2015 at 7:28 pm
Interesting. I will let you know what happens. May have to do another scan. Also, they put my port line in right next to the tumor. I have no idea why and questioned them before they put it in. Just met with the surgeon regarding doing TIL treatment and having the tumor removed for the TIL. He said the location of the port line was a little tricky. I am also wondering if it is swelling up and rubbing against that port line and making it sensitve as well.
On a side note, I remember meeting with my doc right after my port was installed. She said, why did they put it there? I said, I don't know, they weren't taking directions from me that day. Maybe you should have instructed them!! LOL. I have to say, you have to pay attention and be on your toes in the medical system.
Still very achy to gently touch today. Doesn't let your mind get very far from thinking about it!!
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- October 10, 2015 at 1:11 pm
Yes. I have one in my left collar. It is kind of weird. When it first showed up they wouldn't believe me that it was overnight. Suddenly I just had this huge swelling mass and it also swelled up my neck. Then after a few days it shrank down to just the collar. Since the enormous one in my shoulder is only a few centimeters away I figured it travelled from there.
Occasionaly every couple months I think it is swelling up growing because it seems bigger and hurts. Like it's trying to push through my skin. Otherwise it is usually rather flat. I didn't make the connection the muscles could be pushing it up. Maybe that's why the August scan showed it smaller than April. It's around 4 cm by something.
Artie
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- October 10, 2015 at 1:11 pm
Yes. I have one in my left collar. It is kind of weird. When it first showed up they wouldn't believe me that it was overnight. Suddenly I just had this huge swelling mass and it also swelled up my neck. Then after a few days it shrank down to just the collar. Since the enormous one in my shoulder is only a few centimeters away I figured it travelled from there.
Occasionaly every couple months I think it is swelling up growing because it seems bigger and hurts. Like it's trying to push through my skin. Otherwise it is usually rather flat. I didn't make the connection the muscles could be pushing it up. Maybe that's why the August scan showed it smaller than April. It's around 4 cm by something.
Artie
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- October 13, 2015 at 5:28 pm
From what I have read, sometimes tumors will appear to get bigger due to T-cell infiltration. If your scans are showing necrosis in the tumor, that may be what is going on. I have two small tumors that appeared slightly larger on my last scan, even though everything else had shrunk since I started on Keytruda, and that is exactly what my oncologist said was probably going on.
While I have never read anything about this that I recall, it would make sense to me that if T-cells are in the tumor attacking the cancer, that would also make it sensitive and painful.
Of course I don't know that's what's going on with you, but it could be a possibility.
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- October 13, 2015 at 5:28 pm
From what I have read, sometimes tumors will appear to get bigger due to T-cell infiltration. If your scans are showing necrosis in the tumor, that may be what is going on. I have two small tumors that appeared slightly larger on my last scan, even though everything else had shrunk since I started on Keytruda, and that is exactly what my oncologist said was probably going on.
While I have never read anything about this that I recall, it would make sense to me that if T-cells are in the tumor attacking the cancer, that would also make it sensitive and painful.
Of course I don't know that's what's going on with you, but it could be a possibility.
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- October 13, 2015 at 5:28 pm
From what I have read, sometimes tumors will appear to get bigger due to T-cell infiltration. If your scans are showing necrosis in the tumor, that may be what is going on. I have two small tumors that appeared slightly larger on my last scan, even though everything else had shrunk since I started on Keytruda, and that is exactly what my oncologist said was probably going on.
While I have never read anything about this that I recall, it would make sense to me that if T-cells are in the tumor attacking the cancer, that would also make it sensitive and painful.
Of course I don't know that's what's going on with you, but it could be a possibility.
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- October 14, 2015 at 10:53 pm
Hi Tracy,
I too have two very large tumors in this exact same area, one pressed against collar bone like you and Artie. One, just scanned and measured at 8.8cm (yes, cm not mm) is constantly sore and mostly eliminates the chance of sleeping on that side. Right next to it is another similar size large tumor that is mostly under the top of the rib cage and like an iceberg, has a peak squeezing through a gap in the bones which is also very uncomfortable. Since no treatment thus far has really worked to reduce my tumors, radiation was recommended on at least one of them to just improve quality of life and esthetics since both can be seen bulging out even with a shirt on. On the bright side these sub-q tumors do open the door to interliesional therapies because of the easy and direct access to the tumors and that particular part of the body has no major organs so as bad as they are, they are not likely life-threatening.
Aloha,
Gary
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- October 14, 2015 at 10:53 pm
Hi Tracy,
I too have two very large tumors in this exact same area, one pressed against collar bone like you and Artie. One, just scanned and measured at 8.8cm (yes, cm not mm) is constantly sore and mostly eliminates the chance of sleeping on that side. Right next to it is another similar size large tumor that is mostly under the top of the rib cage and like an iceberg, has a peak squeezing through a gap in the bones which is also very uncomfortable. Since no treatment thus far has really worked to reduce my tumors, radiation was recommended on at least one of them to just improve quality of life and esthetics since both can be seen bulging out even with a shirt on. On the bright side these sub-q tumors do open the door to interliesional therapies because of the easy and direct access to the tumors and that particular part of the body has no major organs so as bad as they are, they are not likely life-threatening.
Aloha,
Gary
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- October 14, 2015 at 10:53 pm
Hi Tracy,
I too have two very large tumors in this exact same area, one pressed against collar bone like you and Artie. One, just scanned and measured at 8.8cm (yes, cm not mm) is constantly sore and mostly eliminates the chance of sleeping on that side. Right next to it is another similar size large tumor that is mostly under the top of the rib cage and like an iceberg, has a peak squeezing through a gap in the bones which is also very uncomfortable. Since no treatment thus far has really worked to reduce my tumors, radiation was recommended on at least one of them to just improve quality of life and esthetics since both can be seen bulging out even with a shirt on. On the bright side these sub-q tumors do open the door to interliesional therapies because of the easy and direct access to the tumors and that particular part of the body has no major organs so as bad as they are, they are not likely life-threatening.
Aloha,
Gary
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