› Forums › General Melanoma Community › Recent Biopsy Results
- This topic has 69 replies, 12 voices, and was last updated 8 years, 7 months ago by
jennunicorn.
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- October 8, 2016 at 12:09 am
Recently I had a needle biopsy of a groin lymph node and an armpit lymph node based on size growth and SUV uptake from my last PET/CT scan.
Just got the news that the groin lymph node came back positive for melanoma. The armpit one was negative, but, my oncologist did say that her clinical observation is that the armpit one has been growing over the past couple of scans and the uptake was on the high side this time, she wouldn't be surprised if there was melanoma hiding out there and the needle aspiration just didn't pick it up. But who knows.
So, it's kind of a weird area to be in. Still stage 3, but can be called unresectable in order to have the door open to more treatment options. I guess 3C would be technically correct?
I will be getting an appointment to talk with my onc in person next week for a more in depth conversation. Would love help from you guys, as far as questions I should ask, treatments I should ask about, thoughts on this?
They are testing this sample for BRAF, since I did not get that done initially, so now I will know whether I have even more treatment options in my toolbox or not.
Ironically this very day a year ago I had the really ugly weird mole removed and biopsied… and here I am a year later… Apparently October isn't my month!
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- October 8, 2016 at 12:18 am
Dang! Sorry, Jennie! You're right. Get all the info you can and plow ahead. Sorry you have to, but you can deal with this. I would ask about their ideas regarding trial options as well as the use of ntralsionals (T-VEC, PV-10, etc) in that node vs removal as well as possible nivo. Hang in there and keep us posted. Celeste
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- October 8, 2016 at 12:18 am
Dang! Sorry, Jennie! You're right. Get all the info you can and plow ahead. Sorry you have to, but you can deal with this. I would ask about their ideas regarding trial options as well as the use of ntralsionals (T-VEC, PV-10, etc) in that node vs removal as well as possible nivo. Hang in there and keep us posted. Celeste
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- October 8, 2016 at 4:00 am
Thanks Celeste! Another road block to plow through. My onc breifly touched on possibility of trials but is afraid that right now it's such a small amount that it wouldn't be enough measurable disease… and possibly waiting until there is more measurable disease that would fit trial criteria.. not sure how I feel about that idea. Will update after my appointment next week.
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- October 8, 2016 at 4:00 am
Thanks Celeste! Another road block to plow through. My onc breifly touched on possibility of trials but is afraid that right now it's such a small amount that it wouldn't be enough measurable disease… and possibly waiting until there is more measurable disease that would fit trial criteria.. not sure how I feel about that idea. Will update after my appointment next week.
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- October 8, 2016 at 4:00 am
Thanks Celeste! Another road block to plow through. My onc breifly touched on possibility of trials but is afraid that right now it's such a small amount that it wouldn't be enough measurable disease… and possibly waiting until there is more measurable disease that would fit trial criteria.. not sure how I feel about that idea. Will update after my appointment next week.
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- October 8, 2016 at 12:18 am
Dang! Sorry, Jennie! You're right. Get all the info you can and plow ahead. Sorry you have to, but you can deal with this. I would ask about their ideas regarding trial options as well as the use of ntralsionals (T-VEC, PV-10, etc) in that node vs removal as well as possible nivo. Hang in there and keep us posted. Celeste
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- October 8, 2016 at 3:05 pm
Hi Jenn,
Sorry to hear about the groin node in spite of the ipi treatment…also a bummer that there is doubt re the armpit one too.. but it does sound like your oncologist is being straight with you re suspicions about the armpit.
Braf testing sounds good – found this trial which might be a possibility if the Braf comes back positive.
Which is looking at
Dabrafenib (NSC-763760) and Trametinib (NSC-763093) in BRAF V600E/K Mutant Melanoma
and comes up in a search for UCSF,
There was another one, but that seems to exclude melanoma patients unless under 18-unusual to be that way round NCT02304458
Sorry, don't have personal knowledge of these drugs – but I'm sure there are others who might be able to shed more light. Am waiting for CT scan results myself and am only a result away from walking in your shoes..tried Keytruda for high risk Stage III but was timed out of the trial due to other problems which may or may not have been triggered by the PD1. Have been 100% out of action for the last month- which has given time to do more research and follow news on the forum.
Wish I could offer more than a sympathetic ear and good wishes but given that my magic wand is out of action too its about all I have in the locker.
Crossing fingers that oncologist comes up with something positive next week. It always seems to get slightly easier to deal with when there is a plan in place…
Best of wishes and an internet hug for good measure
Deb
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- October 8, 2016 at 3:05 pm
Hi Jenn,
Sorry to hear about the groin node in spite of the ipi treatment…also a bummer that there is doubt re the armpit one too.. but it does sound like your oncologist is being straight with you re suspicions about the armpit.
Braf testing sounds good – found this trial which might be a possibility if the Braf comes back positive.
Which is looking at
Dabrafenib (NSC-763760) and Trametinib (NSC-763093) in BRAF V600E/K Mutant Melanoma
and comes up in a search for UCSF,
There was another one, but that seems to exclude melanoma patients unless under 18-unusual to be that way round NCT02304458
Sorry, don't have personal knowledge of these drugs – but I'm sure there are others who might be able to shed more light. Am waiting for CT scan results myself and am only a result away from walking in your shoes..tried Keytruda for high risk Stage III but was timed out of the trial due to other problems which may or may not have been triggered by the PD1. Have been 100% out of action for the last month- which has given time to do more research and follow news on the forum.
Wish I could offer more than a sympathetic ear and good wishes but given that my magic wand is out of action too its about all I have in the locker.
Crossing fingers that oncologist comes up with something positive next week. It always seems to get slightly easier to deal with when there is a plan in place…
Best of wishes and an internet hug for good measure
Deb
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- October 8, 2016 at 3:05 pm
Hi Jenn,
Sorry to hear about the groin node in spite of the ipi treatment…also a bummer that there is doubt re the armpit one too.. but it does sound like your oncologist is being straight with you re suspicions about the armpit.
Braf testing sounds good – found this trial which might be a possibility if the Braf comes back positive.
Which is looking at
Dabrafenib (NSC-763760) and Trametinib (NSC-763093) in BRAF V600E/K Mutant Melanoma
and comes up in a search for UCSF,
There was another one, but that seems to exclude melanoma patients unless under 18-unusual to be that way round NCT02304458
Sorry, don't have personal knowledge of these drugs – but I'm sure there are others who might be able to shed more light. Am waiting for CT scan results myself and am only a result away from walking in your shoes..tried Keytruda for high risk Stage III but was timed out of the trial due to other problems which may or may not have been triggered by the PD1. Have been 100% out of action for the last month- which has given time to do more research and follow news on the forum.
Wish I could offer more than a sympathetic ear and good wishes but given that my magic wand is out of action too its about all I have in the locker.
Crossing fingers that oncologist comes up with something positive next week. It always seems to get slightly easier to deal with when there is a plan in place…
Best of wishes and an internet hug for good measure
Deb
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- October 8, 2016 at 3:59 pm
Thank you for the trial ideas Deb. I hope your scan results comes back all good!
Hugs back
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- October 8, 2016 at 3:59 pm
Thank you for the trial ideas Deb. I hope your scan results comes back all good!
Hugs back
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- October 8, 2016 at 3:59 pm
Thank you for the trial ideas Deb. I hope your scan results comes back all good!
Hugs back
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- October 8, 2016 at 3:08 pm
Jen, crap. I so sorry to hear this. I don’t have much advise but just wanted to let you know you are in my thoughts. Contained in lymphnodes is still good. Keep your amazing attitude and I know you will kick this!!Annie
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- October 8, 2016 at 3:08 pm
Jen, crap. I so sorry to hear this. I don’t have much advise but just wanted to let you know you are in my thoughts. Contained in lymphnodes is still good. Keep your amazing attitude and I know you will kick this!!Annie
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- October 8, 2016 at 3:08 pm
Jen, crap. I so sorry to hear this. I don’t have much advise but just wanted to let you know you are in my thoughts. Contained in lymphnodes is still good. Keep your amazing attitude and I know you will kick this!!Annie
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- October 8, 2016 at 7:07 pm
Hey Jenn, does this mean you will have a clnd now? -
- October 8, 2016 at 7:07 pm
Hey Jenn, does this mean you will have a clnd now? -
- October 8, 2016 at 7:07 pm
Hey Jenn, does this mean you will have a clnd now?-
- October 8, 2016 at 7:20 pm
I still don't want one. I already get an easily swollen ankle and leg on the left side which is really uncomfortable, but not full lymphadema. My onc breifly went over some things on the phone yesterday, surgery was not mentioned, but I will still ask her opinion about surgery and why she thinks it is or isn't a good idea. But, no, personally, I still don't want to go through that. Especially since it's very likely it has already traveled past the groin, a clnd wouldn't do much to stop further mets from popping up at this point.
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- October 8, 2016 at 7:20 pm
I still don't want one. I already get an easily swollen ankle and leg on the left side which is really uncomfortable, but not full lymphadema. My onc breifly went over some things on the phone yesterday, surgery was not mentioned, but I will still ask her opinion about surgery and why she thinks it is or isn't a good idea. But, no, personally, I still don't want to go through that. Especially since it's very likely it has already traveled past the groin, a clnd wouldn't do much to stop further mets from popping up at this point.
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- October 8, 2016 at 7:20 pm
I still don't want one. I already get an easily swollen ankle and leg on the left side which is really uncomfortable, but not full lymphadema. My onc breifly went over some things on the phone yesterday, surgery was not mentioned, but I will still ask her opinion about surgery and why she thinks it is or isn't a good idea. But, no, personally, I still don't want to go through that. Especially since it's very likely it has already traveled past the groin, a clnd wouldn't do much to stop further mets from popping up at this point.
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- October 8, 2016 at 9:28 pm
Jenn,
Sorry to hear melanoma was found in more lymph nodes. I don't have much to offer, I just wanted to let you know you are in my thoughts. You are always so kind and share your knowledge with me and everyone else on this forum. At least you will have more options now other than ipi. Please keep us updated.
Laura
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- October 8, 2016 at 9:28 pm
Jenn,
Sorry to hear melanoma was found in more lymph nodes. I don't have much to offer, I just wanted to let you know you are in my thoughts. You are always so kind and share your knowledge with me and everyone else on this forum. At least you will have more options now other than ipi. Please keep us updated.
Laura
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- October 8, 2016 at 9:28 pm
Jenn,
Sorry to hear melanoma was found in more lymph nodes. I don't have much to offer, I just wanted to let you know you are in my thoughts. You are always so kind and share your knowledge with me and everyone else on this forum. At least you will have more options now other than ipi. Please keep us updated.
Laura
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- October 8, 2016 at 9:45 pm
Thank you Laura, hope you're doing well.
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- October 8, 2016 at 9:45 pm
Thank you Laura, hope you're doing well.
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- October 8, 2016 at 9:45 pm
Thank you Laura, hope you're doing well.
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- October 8, 2016 at 11:19 pm
Ah, sh!t, Jenn. I'm so sorry! You need to skip October next year and just go straight to Nov!
When I progressed with in-transits, my onc suggested we leave them rather than remove them to open the door (as you mentioned) to 'unresected' stage 3c, which can be treated with stage 4 meds. It's hard mentally to accept keeping nodes that can easily be removed surgically, but if you do spot resections, then you go back to NED (and no more treatment). I chose to keep the in-transits and go with Ipi/Nivo due to my lower tumor burden rather than pulling out the BRAF guns. Since I was unresected 3c, my insurance approved the stage 4 combination and I got through 2 infusions before my liver went crazy. You had a pretty easy go-round with Ipi the first time around, so you might have an easier time with the combination. You'll have to check Celeste's blog on efficacy of Ipi before the combo, though, as I'm not sure this would be the best way to go for you since you've already had Ipi. I'd opt for anti-PD-1 drugs (keytruda and Nivo) or the combination because with a low tumor burden, these seem to be the most effective.
I'm so so so sorry that you're going through this. I know it's incredibly disappointing to progress…there were definitely tears for me when I got the news. BUT this does open up the door to more treatment options and greater chances of permanent remission. It's a double edged sword to be where you are. But keep moving forward and keep your spirits up! To quote Dory – just keep swimming!
Oh, and wine. Wine helps a lot 😉
Lauren
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- October 8, 2016 at 11:19 pm
Ah, sh!t, Jenn. I'm so sorry! You need to skip October next year and just go straight to Nov!
When I progressed with in-transits, my onc suggested we leave them rather than remove them to open the door (as you mentioned) to 'unresected' stage 3c, which can be treated with stage 4 meds. It's hard mentally to accept keeping nodes that can easily be removed surgically, but if you do spot resections, then you go back to NED (and no more treatment). I chose to keep the in-transits and go with Ipi/Nivo due to my lower tumor burden rather than pulling out the BRAF guns. Since I was unresected 3c, my insurance approved the stage 4 combination and I got through 2 infusions before my liver went crazy. You had a pretty easy go-round with Ipi the first time around, so you might have an easier time with the combination. You'll have to check Celeste's blog on efficacy of Ipi before the combo, though, as I'm not sure this would be the best way to go for you since you've already had Ipi. I'd opt for anti-PD-1 drugs (keytruda and Nivo) or the combination because with a low tumor burden, these seem to be the most effective.
I'm so so so sorry that you're going through this. I know it's incredibly disappointing to progress…there were definitely tears for me when I got the news. BUT this does open up the door to more treatment options and greater chances of permanent remission. It's a double edged sword to be where you are. But keep moving forward and keep your spirits up! To quote Dory – just keep swimming!
Oh, and wine. Wine helps a lot 😉
Lauren
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- October 8, 2016 at 11:19 pm
Ah, sh!t, Jenn. I'm so sorry! You need to skip October next year and just go straight to Nov!
When I progressed with in-transits, my onc suggested we leave them rather than remove them to open the door (as you mentioned) to 'unresected' stage 3c, which can be treated with stage 4 meds. It's hard mentally to accept keeping nodes that can easily be removed surgically, but if you do spot resections, then you go back to NED (and no more treatment). I chose to keep the in-transits and go with Ipi/Nivo due to my lower tumor burden rather than pulling out the BRAF guns. Since I was unresected 3c, my insurance approved the stage 4 combination and I got through 2 infusions before my liver went crazy. You had a pretty easy go-round with Ipi the first time around, so you might have an easier time with the combination. You'll have to check Celeste's blog on efficacy of Ipi before the combo, though, as I'm not sure this would be the best way to go for you since you've already had Ipi. I'd opt for anti-PD-1 drugs (keytruda and Nivo) or the combination because with a low tumor burden, these seem to be the most effective.
I'm so so so sorry that you're going through this. I know it's incredibly disappointing to progress…there were definitely tears for me when I got the news. BUT this does open up the door to more treatment options and greater chances of permanent remission. It's a double edged sword to be where you are. But keep moving forward and keep your spirits up! To quote Dory – just keep swimming!
Oh, and wine. Wine helps a lot 😉
Lauren
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- October 8, 2016 at 11:24 pm
Thank you so much Lauren! It's a weird spot to be in for sure. I really don't want surgery again, plus, having that door open to so many more treatment options is really nice. Of course, I'd love if I just never even needed to consider other options, but sometimes (or all the time) life doesn't go as planned.
This news happened on a good weekend… it's art and wine festival weekend… therefore, tomorrow, wine is on the menu!
Hope you're well,
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- October 8, 2016 at 11:24 pm
Thank you so much Lauren! It's a weird spot to be in for sure. I really don't want surgery again, plus, having that door open to so many more treatment options is really nice. Of course, I'd love if I just never even needed to consider other options, but sometimes (or all the time) life doesn't go as planned.
This news happened on a good weekend… it's art and wine festival weekend… therefore, tomorrow, wine is on the menu!
Hope you're well,
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- October 8, 2016 at 11:24 pm
Thank you so much Lauren! It's a weird spot to be in for sure. I really don't want surgery again, plus, having that door open to so many more treatment options is really nice. Of course, I'd love if I just never even needed to consider other options, but sometimes (or all the time) life doesn't go as planned.
This news happened on a good weekend… it's art and wine festival weekend… therefore, tomorrow, wine is on the menu!
Hope you're well,
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- October 10, 2016 at 3:16 pm
Thinking of you Jenn- I always follow your posts and you've helped many including me. And of course you are a fellow dog lover 🙂
Keep on keeping on and posting.
Best-
Peggy
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- October 10, 2016 at 3:16 pm
Thinking of you Jenn- I always follow your posts and you've helped many including me. And of course you are a fellow dog lover 🙂
Keep on keeping on and posting.
Best-
Peggy
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- October 10, 2016 at 3:16 pm
Thinking of you Jenn- I always follow your posts and you've helped many including me. And of course you are a fellow dog lover 🙂
Keep on keeping on and posting.
Best-
Peggy
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- October 10, 2016 at 6:06 pm
I am very sorry to hear this news but I am sure you will come through. I'm pulling for you.
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- October 10, 2016 at 6:19 pm
Thank you!
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- October 10, 2016 at 6:19 pm
Thank you!
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- October 10, 2016 at 6:19 pm
Thank you!
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- October 11, 2016 at 2:52 am
Hi Jenn
am thinking of you too, praying too
your positive attitude and help for others (myself included) always inspires me, thanks for this
am in a similar situation to yours – melanoma on lower left leg – took ipi as adjuvant like you, unlike you my liver could not tolerare so was taken off; my melanoma has recurred but so far remains local, so we are treating this as unresectable (have had two excisions but keeps coming back) and started pembro first infusion three weeks ago
I think as lauren mentions, its weird not to remove it, but now have to hope the pembro will work
if i could borrow your positive attitude then am sure it will!
was sorry to read your news this weekend but wish you (and others here) the best
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- October 11, 2016 at 2:52 am
Hi Jenn
am thinking of you too, praying too
your positive attitude and help for others (myself included) always inspires me, thanks for this
am in a similar situation to yours – melanoma on lower left leg – took ipi as adjuvant like you, unlike you my liver could not tolerare so was taken off; my melanoma has recurred but so far remains local, so we are treating this as unresectable (have had two excisions but keeps coming back) and started pembro first infusion three weeks ago
I think as lauren mentions, its weird not to remove it, but now have to hope the pembro will work
if i could borrow your positive attitude then am sure it will!
was sorry to read your news this weekend but wish you (and others here) the best
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- October 11, 2016 at 2:52 am
Hi Jenn
am thinking of you too, praying too
your positive attitude and help for others (myself included) always inspires me, thanks for this
am in a similar situation to yours – melanoma on lower left leg – took ipi as adjuvant like you, unlike you my liver could not tolerare so was taken off; my melanoma has recurred but so far remains local, so we are treating this as unresectable (have had two excisions but keeps coming back) and started pembro first infusion three weeks ago
I think as lauren mentions, its weird not to remove it, but now have to hope the pembro will work
if i could borrow your positive attitude then am sure it will!
was sorry to read your news this weekend but wish you (and others here) the best
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- October 11, 2016 at 3:55 am
Thank you Mark, sorry yours has recurred also, but in a weird way it's nice to have all of the better treatment options available to really kick this in the butt!
Sending good thoughts your way
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- October 11, 2016 at 3:55 am
Thank you Mark, sorry yours has recurred also, but in a weird way it's nice to have all of the better treatment options available to really kick this in the butt!
Sending good thoughts your way
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- October 11, 2016 at 3:55 am
Thank you Mark, sorry yours has recurred also, but in a weird way it's nice to have all of the better treatment options available to really kick this in the butt!
Sending good thoughts your way
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- October 12, 2016 at 3:03 am
Hi Jenn
This sucks. I really would not recommend the surgery. Lymphedema is awful. You will get the right therapy and be good as new. Sending hugs and prayers from Seattle
Tell Copper to give you extra licks
Hugs
Vicki
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- October 12, 2016 at 4:36 am
Thank you Vicki! I definitely do not want surgery… lymphedema is not on my list of things I want to deal with in life!
Hope you are well
Hugs back 🙂
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- October 12, 2016 at 4:36 am
Thank you Vicki! I definitely do not want surgery… lymphedema is not on my list of things I want to deal with in life!
Hope you are well
Hugs back 🙂
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- October 12, 2016 at 4:36 am
Thank you Vicki! I definitely do not want surgery… lymphedema is not on my list of things I want to deal with in life!
Hope you are well
Hugs back 🙂
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- October 12, 2016 at 3:03 am
Hi Jenn
This sucks. I really would not recommend the surgery. Lymphedema is awful. You will get the right therapy and be good as new. Sending hugs and prayers from Seattle
Tell Copper to give you extra licks
Hugs
Vicki
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- October 12, 2016 at 3:03 am
Hi Jenn
This sucks. I really would not recommend the surgery. Lymphedema is awful. You will get the right therapy and be good as new. Sending hugs and prayers from Seattle
Tell Copper to give you extra licks
Hugs
Vicki
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- October 13, 2016 at 5:55 am
Hang in there!! You are on my prayers, mel is strong, but u are stronger!!!! -
- October 13, 2016 at 5:55 am
Hang in there!! You are on my prayers, mel is strong, but u are stronger!!!! -
- October 13, 2016 at 5:55 am
Hang in there!! You are on my prayers, mel is strong, but u are stronger!!!!
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Tagged: cutaneous melanoma
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