› Forums › General Melanoma Community › Mr. Potato Head
- This topic has 33 replies, 7 voices, and was last updated 8 years, 12 months ago by
_Paul_.
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- December 9, 2016 at 6:11 am
I have a question for you all. Does anyone have experience with sub-q’s popping up on the scalp? My primary was on my scalp, and recurred twice. I have a sub-q on my shoulder, which appeared quickly, but isn’t growing rapidly. At this point maybe 1.5 cm.
However, I have about a half dozen new BB-sized lumps on my head. They aren’t inflamed and really just feel like BBs just under my dermis. Two of them are tender, the rest not. But who wants to have lumps on their head (then again who wants to have this damn cancer in the first place)?
The research lead for the TIL trial wants to biopsy the one on my shoulder, but I am tempted to ask her do the one on my forehead instead. At least the other ones are less visible. Well, I guess until my hair falls out from the chemo.
– Paul
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- December 9, 2016 at 2:00 pm
Well funny thing is my last pet scan showed a couple on my head around my ear and in the one remaining lymph node on the right side of my face. They did a biopsy on the node and I am going to find out the results today. I’m guessing positive results will mean more surgery… And my face was finally looking pretty again. Lol Can’t they biopsy both your shoulder and your head?
Does your trial allow for surgery? I would just want all that crap cut out.-
- December 11, 2016 at 12:45 am
Sorry to hear about the ones in/on your head too.
I guess realistically speaking, since I start the trial on the 20th, I can just wait to see if it works. They should start to disappear if so. I can just rub my head as my personal melanoma meter!
But since posting this, I have come to find out I also have one in my left ear canal. That one seems scarier to me but my main melanoma onc didn't seem overly concerned. One more question for next week when I have all the trial exclusion testing and meet with the team.
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- December 11, 2016 at 12:45 am
Sorry to hear about the ones in/on your head too.
I guess realistically speaking, since I start the trial on the 20th, I can just wait to see if it works. They should start to disappear if so. I can just rub my head as my personal melanoma meter!
But since posting this, I have come to find out I also have one in my left ear canal. That one seems scarier to me but my main melanoma onc didn't seem overly concerned. One more question for next week when I have all the trial exclusion testing and meet with the team.
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- December 11, 2016 at 12:45 am
Sorry to hear about the ones in/on your head too.
I guess realistically speaking, since I start the trial on the 20th, I can just wait to see if it works. They should start to disappear if so. I can just rub my head as my personal melanoma meter!
But since posting this, I have come to find out I also have one in my left ear canal. That one seems scarier to me but my main melanoma onc didn't seem overly concerned. One more question for next week when I have all the trial exclusion testing and meet with the team.
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- December 9, 2016 at 2:00 pm
Well funny thing is my last pet scan showed a couple on my head around my ear and in the one remaining lymph node on the right side of my face. They did a biopsy on the node and I am going to find out the results today. I’m guessing positive results will mean more surgery… And my face was finally looking pretty again. Lol Can’t they biopsy both your shoulder and your head?
Does your trial allow for surgery? I would just want all that crap cut out. -
- December 9, 2016 at 2:00 pm
Well funny thing is my last pet scan showed a couple on my head around my ear and in the one remaining lymph node on the right side of my face. They did a biopsy on the node and I am going to find out the results today. I’m guessing positive results will mean more surgery… And my face was finally looking pretty again. Lol Can’t they biopsy both your shoulder and your head?
Does your trial allow for surgery? I would just want all that crap cut out. -
- December 9, 2016 at 2:02 pm
Paul-
Unfortunately I've had a few lumps pop out on scalp. I had 3 removed just over a week ago because they simply just bothered me. Just found out yesterday that all 3 were melanoma. I guess I wasn't shocked. Still pisses me off as 1 of the bumps were after I did Adoptive Cell Therapy at MDA. So while I may have benefited, I have to assume not my magic bullett. So now I'm off to neurosurgeon to get results of MRI I did other day. Looks like I may be starting TIL if all goes well. I've been having rough go lately with liver. Wishing you nothing but best.
Josh
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- December 9, 2016 at 2:33 pm
Hi Josh, I hope you get some good results today!!! Best Wishes!!!Ed
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- December 9, 2016 at 2:44 pm
I second Ed's sentiments, Joshie. Just thinking about both of you with your easily accessible lumps and bumps…..even though I know you are about to embark on different things…..maybe ask about intralesionals???? I mean….it never hurts to ask and there's some pretty compelling data. Just thinking. Hang in there, Paul. Withing you both well. celeste
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- December 10, 2016 at 3:38 am
Hi Brian!
not going to go into detail but you can read post I just put up. I'll be there on Thursday for CT and see doc on Friday. Those cells put up a fight for me but given everything happening, not my magic bullett. Not sure if disease load played into that but I'm disappointed. Praying for better results for you.
Josh
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- December 10, 2016 at 3:38 am
Hi Brian!
not going to go into detail but you can read post I just put up. I'll be there on Thursday for CT and see doc on Friday. Those cells put up a fight for me but given everything happening, not my magic bullett. Not sure if disease load played into that but I'm disappointed. Praying for better results for you.
Josh
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- December 10, 2016 at 3:38 am
Hi Brian!
not going to go into detail but you can read post I just put up. I'll be there on Thursday for CT and see doc on Friday. Those cells put up a fight for me but given everything happening, not my magic bullett. Not sure if disease load played into that but I'm disappointed. Praying for better results for you.
Josh
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- December 9, 2016 at 2:44 pm
I second Ed's sentiments, Joshie. Just thinking about both of you with your easily accessible lumps and bumps…..even though I know you are about to embark on different things…..maybe ask about intralesionals???? I mean….it never hurts to ask and there's some pretty compelling data. Just thinking. Hang in there, Paul. Withing you both well. celeste
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- December 9, 2016 at 2:44 pm
I second Ed's sentiments, Joshie. Just thinking about both of you with your easily accessible lumps and bumps…..even though I know you are about to embark on different things…..maybe ask about intralesionals???? I mean….it never hurts to ask and there's some pretty compelling data. Just thinking. Hang in there, Paul. Withing you both well. celeste
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- December 9, 2016 at 2:33 pm
Hi Josh, I hope you get some good results today!!! Best Wishes!!!Ed
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- December 9, 2016 at 2:33 pm
Hi Josh, I hope you get some good results today!!! Best Wishes!!!Ed
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- December 11, 2016 at 12:57 am
I am happy you are getting such great info in the responses to your other post about the brain mets they found. Hopefully they can zap those suckers and get the TIL started shortly after. And like another person pointed out, you could get an abscopal effect with the TIL.
I like the idea of removing them for no better reason then because of being bothered. I'm definitely going to ask. I haven't had any of mine biopsied yet, but given how they are slowly but steadily growing and have dark looking interiors (like looking at a blood blister under the skin), it only makes sense that's what they are, and my oncologist didn't even try to disagree when first I showed him the sub-q on my shoulder.
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- December 11, 2016 at 12:57 am
I am happy you are getting such great info in the responses to your other post about the brain mets they found. Hopefully they can zap those suckers and get the TIL started shortly after. And like another person pointed out, you could get an abscopal effect with the TIL.
I like the idea of removing them for no better reason then because of being bothered. I'm definitely going to ask. I haven't had any of mine biopsied yet, but given how they are slowly but steadily growing and have dark looking interiors (like looking at a blood blister under the skin), it only makes sense that's what they are, and my oncologist didn't even try to disagree when first I showed him the sub-q on my shoulder.
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- December 11, 2016 at 12:57 am
I am happy you are getting such great info in the responses to your other post about the brain mets they found. Hopefully they can zap those suckers and get the TIL started shortly after. And like another person pointed out, you could get an abscopal effect with the TIL.
I like the idea of removing them for no better reason then because of being bothered. I'm definitely going to ask. I haven't had any of mine biopsied yet, but given how they are slowly but steadily growing and have dark looking interiors (like looking at a blood blister under the skin), it only makes sense that's what they are, and my oncologist didn't even try to disagree when first I showed him the sub-q on my shoulder.
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- December 9, 2016 at 2:02 pm
Paul-
Unfortunately I've had a few lumps pop out on scalp. I had 3 removed just over a week ago because they simply just bothered me. Just found out yesterday that all 3 were melanoma. I guess I wasn't shocked. Still pisses me off as 1 of the bumps were after I did Adoptive Cell Therapy at MDA. So while I may have benefited, I have to assume not my magic bullett. So now I'm off to neurosurgeon to get results of MRI I did other day. Looks like I may be starting TIL if all goes well. I've been having rough go lately with liver. Wishing you nothing but best.
Josh
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- December 9, 2016 at 2:02 pm
Paul-
Unfortunately I've had a few lumps pop out on scalp. I had 3 removed just over a week ago because they simply just bothered me. Just found out yesterday that all 3 were melanoma. I guess I wasn't shocked. Still pisses me off as 1 of the bumps were after I did Adoptive Cell Therapy at MDA. So while I may have benefited, I have to assume not my magic bullett. So now I'm off to neurosurgeon to get results of MRI I did other day. Looks like I may be starting TIL if all goes well. I've been having rough go lately with liver. Wishing you nothing but best.
Josh
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- December 9, 2016 at 4:51 pm
Paul –
My primary was also on my scalp (0.4mm depth, non-ulcerated, excised with clear margins) and as the beast was taking over my body 6 years later I also had several small SubQ lesions pop up on my head. All were non-pigmented and looked kind of like a benign pimple. Like yours, some were mildly inflamed and tender, others weren't. In retrospect, one small one had been there for years, but not recognized by either me or my Derm as a met.
Since they became so obvious to me, it was very interesting to follow their demise as I responded in the combo trial. By the second infusion they were soft and shrinking, by the third infusion completely gone with no residual.
I had had a good-sized (1cm X 2cm) tumor recurrence in the incision line from my parotidectomy which was excised and used for tumor markers, so did not need to have any of my scalp lesions biopsied.
January will be three years since the combo trial started for me — still NED…
DVD
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- December 11, 2016 at 1:06 am
That is awesome, 3 years of NEDness.
And it would be immensely satisfying to feel Zaphod (I nicknamed my biggest sub-q) shrinking and dying on my shoulder. But the plan is to biopsy it (and test for cKIT and NRAS). Maybe an option is to leave the sub-q's on my head until after the treatment is completed by the beginning of January. If they are shrinking like yours did then there wouldn't be a reason to cut them out.
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- December 11, 2016 at 1:06 am
That is awesome, 3 years of NEDness.
And it would be immensely satisfying to feel Zaphod (I nicknamed my biggest sub-q) shrinking and dying on my shoulder. But the plan is to biopsy it (and test for cKIT and NRAS). Maybe an option is to leave the sub-q's on my head until after the treatment is completed by the beginning of January. If they are shrinking like yours did then there wouldn't be a reason to cut them out.
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- December 11, 2016 at 1:06 am
That is awesome, 3 years of NEDness.
And it would be immensely satisfying to feel Zaphod (I nicknamed my biggest sub-q) shrinking and dying on my shoulder. But the plan is to biopsy it (and test for cKIT and NRAS). Maybe an option is to leave the sub-q's on my head until after the treatment is completed by the beginning of January. If they are shrinking like yours did then there wouldn't be a reason to cut them out.
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- December 9, 2016 at 4:51 pm
Paul –
My primary was also on my scalp (0.4mm depth, non-ulcerated, excised with clear margins) and as the beast was taking over my body 6 years later I also had several small SubQ lesions pop up on my head. All were non-pigmented and looked kind of like a benign pimple. Like yours, some were mildly inflamed and tender, others weren't. In retrospect, one small one had been there for years, but not recognized by either me or my Derm as a met.
Since they became so obvious to me, it was very interesting to follow their demise as I responded in the combo trial. By the second infusion they were soft and shrinking, by the third infusion completely gone with no residual.
I had had a good-sized (1cm X 2cm) tumor recurrence in the incision line from my parotidectomy which was excised and used for tumor markers, so did not need to have any of my scalp lesions biopsied.
January will be three years since the combo trial started for me — still NED…
DVD
-
- December 9, 2016 at 4:51 pm
Paul –
My primary was also on my scalp (0.4mm depth, non-ulcerated, excised with clear margins) and as the beast was taking over my body 6 years later I also had several small SubQ lesions pop up on my head. All were non-pigmented and looked kind of like a benign pimple. Like yours, some were mildly inflamed and tender, others weren't. In retrospect, one small one had been there for years, but not recognized by either me or my Derm as a met.
Since they became so obvious to me, it was very interesting to follow their demise as I responded in the combo trial. By the second infusion they were soft and shrinking, by the third infusion completely gone with no residual.
I had had a good-sized (1cm X 2cm) tumor recurrence in the incision line from my parotidectomy which was excised and used for tumor markers, so did not need to have any of my scalp lesions biopsied.
January will be three years since the combo trial started for me — still NED…
DVD
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