› Forums › General Melanoma Community › Advice/Help on next steps for my mom
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- January 18, 2017 at 11:26 pm
Hi everybody,
My Mom was diagnosed 3b in November 2015. Primary was 1.8, ulcerated, SSM on her right shoulder/chest. After one sentinel node came back positive for a 1mm micromet, she elected to have a lymph node dissection. No more cancer was found.
Two weeks ago a small black lesion appeared about 1cm away from the lower part of her wide excision scar. The lesion was about 2-3mm. We received biopsy results today that it is melanoma. Her dermatologist explained that it had likely travelled through the skin and that she would be referred to cancer clinic for next steps.
I know there are many knowledgable people on this board, probably more so than my mom's Derm. Could anybody offer any insight into what we are looking at next? The waiting game kills me.
Thank you in advance.
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- January 19, 2017 at 1:00 am
Hi Selle7 sorry for the bad news. I think there are people here much more expert than me, but here is what i think should happen next based on personal experience (and others more expert have not replied yet so should try to help
Make sure to consult a melanoma specialist at the cancer center
Good news that the recurrence seems small – well caught
But i think they may recommend a new set of scans to confirm staging. Lets hope these are good.
if you have good news then i think her staging stays 3b
you are probably looking at another excision or removal, but you might want to consider immunotherapy instead if allowed (not sure about this at this stage – thats why you need to see a melanoma specialist who can consider all the options with you
good luck, there is much help on this board, and others much more knowledgeable though can be a little overwhelming
Mark
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- January 19, 2017 at 2:32 am
Thank you so much for replying. I am in Canada so I'm not sure if we get a pick of specialists, but will look into it.
I have read articles where the prognosis after local recurrence ranges from 7-55%. That lower number is very overwhelming.
Would desperately love to hear from anyone out there in a similar situation.
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- January 19, 2017 at 4:10 am
Dear Selle7, I too am a numbers person but they are very confusing and depressing, and conflate a lot of cases at different stages and also ignore the new treeatments. So best not to get too bogged down on those but i think your numbers are on the pessimistic side and you simply dont know enough yet about your mum's case. Also even If the numbers seem bad we have to hope and also try to get on with life and make best of it be grateful help others.
there are many canadian patients on this board, so you can search for their cases, you can find melanoma specialists in canada and this is the best advice in this board and i follow it, then i think your mum will need to do scans etc as i described earlier to check whats going on. If its limited then she could be in a good place.
also why not check out celestes blog (she posts as bubbles) – it has lots of info and the right attitude too
good luck mark
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- January 19, 2017 at 4:10 am
Dear Selle7, I too am a numbers person but they are very confusing and depressing, and conflate a lot of cases at different stages and also ignore the new treeatments. So best not to get too bogged down on those but i think your numbers are on the pessimistic side and you simply dont know enough yet about your mum's case. Also even If the numbers seem bad we have to hope and also try to get on with life and make best of it be grateful help others.
there are many canadian patients on this board, so you can search for their cases, you can find melanoma specialists in canada and this is the best advice in this board and i follow it, then i think your mum will need to do scans etc as i described earlier to check whats going on. If its limited then she could be in a good place.
also why not check out celestes blog (she posts as bubbles) – it has lots of info and the right attitude too
good luck mark
-
- January 19, 2017 at 4:10 am
Dear Selle7, I too am a numbers person but they are very confusing and depressing, and conflate a lot of cases at different stages and also ignore the new treeatments. So best not to get too bogged down on those but i think your numbers are on the pessimistic side and you simply dont know enough yet about your mum's case. Also even If the numbers seem bad we have to hope and also try to get on with life and make best of it be grateful help others.
there are many canadian patients on this board, so you can search for their cases, you can find melanoma specialists in canada and this is the best advice in this board and i follow it, then i think your mum will need to do scans etc as i described earlier to check whats going on. If its limited then she could be in a good place.
also why not check out celestes blog (she posts as bubbles) – it has lots of info and the right attitude too
good luck mark
-
- January 19, 2017 at 2:32 am
Thank you so much for replying. I am in Canada so I'm not sure if we get a pick of specialists, but will look into it.
I have read articles where the prognosis after local recurrence ranges from 7-55%. That lower number is very overwhelming.
Would desperately love to hear from anyone out there in a similar situation.
-
- January 19, 2017 at 2:32 am
Thank you so much for replying. I am in Canada so I'm not sure if we get a pick of specialists, but will look into it.
I have read articles where the prognosis after local recurrence ranges from 7-55%. That lower number is very overwhelming.
Would desperately love to hear from anyone out there in a similar situation.
-
- January 19, 2017 at 1:00 am
Hi Selle7 sorry for the bad news. I think there are people here much more expert than me, but here is what i think should happen next based on personal experience (and others more expert have not replied yet so should try to help
Make sure to consult a melanoma specialist at the cancer center
Good news that the recurrence seems small – well caught
But i think they may recommend a new set of scans to confirm staging. Lets hope these are good.
if you have good news then i think her staging stays 3b
you are probably looking at another excision or removal, but you might want to consider immunotherapy instead if allowed (not sure about this at this stage – thats why you need to see a melanoma specialist who can consider all the options with you
good luck, there is much help on this board, and others much more knowledgeable though can be a little overwhelming
Mark
-
- January 19, 2017 at 1:00 am
Hi Selle7 sorry for the bad news. I think there are people here much more expert than me, but here is what i think should happen next based on personal experience (and others more expert have not replied yet so should try to help
Make sure to consult a melanoma specialist at the cancer center
Good news that the recurrence seems small – well caught
But i think they may recommend a new set of scans to confirm staging. Lets hope these are good.
if you have good news then i think her staging stays 3b
you are probably looking at another excision or removal, but you might want to consider immunotherapy instead if allowed (not sure about this at this stage – thats why you need to see a melanoma specialist who can consider all the options with you
good luck, there is much help on this board, and others much more knowledgeable though can be a little overwhelming
Mark
-
- January 19, 2017 at 5:00 am
Hi Selle,
i am so very sorry to hear about your mother, my father is currently stage 3C- finished 6 weeks of radiation and currently on keytruda. i agree with what mark said above, the most important thing to do first is find a melanoma specialist, I understand you're in Canada but if you have to fight do it because that will make a huge difference in her care and treatment plan. My mom works at large cancer institute and will get patients from Canada who need care quickly from a specialist, not easy by any means but worth it.
Your mom will need a full pet scan and mri of the brain for proper staging. Did she have a full neck dissection? If not they'll probably discuss that to ensure it hasn't spread to the entire lymph node basin. If her scans are clear and it's localized at stage 3 options are yervoy, comanly referred to as ipi and the other choice is interferon. Yervoy has a response rate of 12% but when it works it works well, just doesn't work for the majority of people – interferon is rough with low response rates as well.
Do you know her BRAF status? There are some clinical trials going on for stage 3 since options are limited compared to stage 4.
Sorry for the info overload, hopefully it helps. I wish your mother (and you) well. I know how hard it is to watch your loved one go through this, I've spent 13 years keeping up to date with melanoma because of my dad, now working in the Oncology field and trying desperately to get him from stage 3 to NED instead of stage 4.
All the best,
J
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- January 19, 2017 at 5:18 am
Some info on stage 3 clinical trials
ipi + nivo for stage 3 (yervoy + Opdivo)
This is very promising for the stage 3 BRAF positive patients. 77% response rate and 58% complete response
some good info on yervoy for stage3- like I said, when it works it works well
Onclive is a great place to read and hear about what a lot of the thought leaders in melanoma are doing.
J
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- January 19, 2017 at 5:18 am
Some info on stage 3 clinical trials
ipi + nivo for stage 3 (yervoy + Opdivo)
This is very promising for the stage 3 BRAF positive patients. 77% response rate and 58% complete response
some good info on yervoy for stage3- like I said, when it works it works well
Onclive is a great place to read and hear about what a lot of the thought leaders in melanoma are doing.
J
-
- January 19, 2017 at 5:18 am
Some info on stage 3 clinical trials
ipi + nivo for stage 3 (yervoy + Opdivo)
This is very promising for the stage 3 BRAF positive patients. 77% response rate and 58% complete response
some good info on yervoy for stage3- like I said, when it works it works well
Onclive is a great place to read and hear about what a lot of the thought leaders in melanoma are doing.
J
-
- January 19, 2017 at 5:00 am
Hi Selle,
i am so very sorry to hear about your mother, my father is currently stage 3C- finished 6 weeks of radiation and currently on keytruda. i agree with what mark said above, the most important thing to do first is find a melanoma specialist, I understand you're in Canada but if you have to fight do it because that will make a huge difference in her care and treatment plan. My mom works at large cancer institute and will get patients from Canada who need care quickly from a specialist, not easy by any means but worth it.
Your mom will need a full pet scan and mri of the brain for proper staging. Did she have a full neck dissection? If not they'll probably discuss that to ensure it hasn't spread to the entire lymph node basin. If her scans are clear and it's localized at stage 3 options are yervoy, comanly referred to as ipi and the other choice is interferon. Yervoy has a response rate of 12% but when it works it works well, just doesn't work for the majority of people – interferon is rough with low response rates as well.
Do you know her BRAF status? There are some clinical trials going on for stage 3 since options are limited compared to stage 4.
Sorry for the info overload, hopefully it helps. I wish your mother (and you) well. I know how hard it is to watch your loved one go through this, I've spent 13 years keeping up to date with melanoma because of my dad, now working in the Oncology field and trying desperately to get him from stage 3 to NED instead of stage 4.
All the best,
J
-
- January 19, 2017 at 5:00 am
Hi Selle,
i am so very sorry to hear about your mother, my father is currently stage 3C- finished 6 weeks of radiation and currently on keytruda. i agree with what mark said above, the most important thing to do first is find a melanoma specialist, I understand you're in Canada but if you have to fight do it because that will make a huge difference in her care and treatment plan. My mom works at large cancer institute and will get patients from Canada who need care quickly from a specialist, not easy by any means but worth it.
Your mom will need a full pet scan and mri of the brain for proper staging. Did she have a full neck dissection? If not they'll probably discuss that to ensure it hasn't spread to the entire lymph node basin. If her scans are clear and it's localized at stage 3 options are yervoy, comanly referred to as ipi and the other choice is interferon. Yervoy has a response rate of 12% but when it works it works well, just doesn't work for the majority of people – interferon is rough with low response rates as well.
Do you know her BRAF status? There are some clinical trials going on for stage 3 since options are limited compared to stage 4.
Sorry for the info overload, hopefully it helps. I wish your mother (and you) well. I know how hard it is to watch your loved one go through this, I've spent 13 years keeping up to date with melanoma because of my dad, now working in the Oncology field and trying desperately to get him from stage 3 to NED instead of stage 4.
All the best,
J
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Tagged: cutaneous melanoma
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