› Forums › General Melanoma Community › Anal melanoma treatment
- This topic has 27 replies, 6 voices, and was last updated 9 years, 3 months ago by RGal.
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- December 22, 2014 at 1:09 pm
I am trying to get my father to find a new oncologist. Can you please back me up on this. Dad diagnosed end of Feb w a 5.6mm ulcerated anal melanoma mass. Dermal mitoses at least 8 per sq mm. T4b lesion. I can find no record of checking any lymph nodes. Oncologist (Dr Pecara) recommended PET/CT scan and MRI of brain. They were clear in April. He called it Stage IIb melanoma, Access c kit Nras if recurs and follow expectantly. In August he had a check up, no scan and asked for a PET CT scan before next visit. In Dec he has the scan and of there melanoma nodules are all over his lungs.
I am not surprised from what I read, I was almost expecting this.
I do not trust this oncologist and cannot believe he is listed on the Aim at Melanoma website as being a specialist. and need to get my parents to agree to see a melanoma specialist but it will be a fight. Do you agree this care is less than acceptable?
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- December 22, 2014 at 1:38 pm
After being on this site I am all for second opinions !!! Please encourage your dad to get one !!! Prayers and love sent to you and your dad !!! -
- December 22, 2014 at 1:38 pm
After being on this site I am all for second opinions !!! Please encourage your dad to get one !!! Prayers and love sent to you and your dad !!! -
- December 22, 2014 at 1:38 pm
After being on this site I am all for second opinions !!! Please encourage your dad to get one !!! Prayers and love sent to you and your dad !!! -
- December 22, 2014 at 3:22 pm
What were you expecting should be done differently? Checking the sentinel node is more appropriate for cutaneous melanoma. 6 month scans are certainly not out of the ordinary. There aren't any treatments for stage II melanoma — realistically, the only current "treatment" is for stage IV. Anal melanoma is certainly rare, but you need to understand there are only so many options. Clinical trials or stage IV treatments are really all that exist for melanoma except surgery.
Second opinions are always good, however.
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- December 31, 2014 at 1:43 am
Hi anonymous, i am very curious as to why checking the sentinel lymph node is not really approximate for mucosal melanoma?
If my dumbass local surgeon had had the knowledge to check lymph nodes 9 months before I, personally, found my diseased lymph node, I might not have went to stage Iv at 9 months after initial melanoma diagnosis.
Can you provide any peer reviewed articles to separate out checking the SLN between mucosal and cutaneous?
Yes, second opinions can indeed be lifesaving!
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- December 31, 2014 at 1:43 am
Hi anonymous, i am very curious as to why checking the sentinel lymph node is not really approximate for mucosal melanoma?
If my dumbass local surgeon had had the knowledge to check lymph nodes 9 months before I, personally, found my diseased lymph node, I might not have went to stage Iv at 9 months after initial melanoma diagnosis.
Can you provide any peer reviewed articles to separate out checking the SLN between mucosal and cutaneous?
Yes, second opinions can indeed be lifesaving!
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- December 31, 2014 at 1:43 am
Hi anonymous, i am very curious as to why checking the sentinel lymph node is not really approximate for mucosal melanoma?
If my dumbass local surgeon had had the knowledge to check lymph nodes 9 months before I, personally, found my diseased lymph node, I might not have went to stage Iv at 9 months after initial melanoma diagnosis.
Can you provide any peer reviewed articles to separate out checking the SLN between mucosal and cutaneous?
Yes, second opinions can indeed be lifesaving!
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- January 8, 2015 at 8:47 pm
Hi Jerry,
what I wrote is based on consultations with different doctors (altogether 5):
1. advised us to have it
2. told us, that the first one practices "academic medicine" and this method is not very trustworthy. Lympha might go to groin nodes (these can be checked), but as well to mesorectum and pelvic ones and there is problem to detect and with some of them to take them out.
3. was of similar opinion as the second one. He summed up, that sentinel node biopsy can be done, but not doing it is not a mistake. His opinion was that radical operation with colostomy and lymhadenoctomy would increase chances much more.
4. advised my penfriend's mother to have sentinel node biopsy and it showed metas in groin nodes. But melanoma was also in pelvic ones which were not showed by sentinel node biopsy.
5. In Dana Faber in Boston doctors told my penfriend's mother not to it (she finally did it as I wrote above).
A year ago, as my mother was diagnosed, I did some research in the Internet and I found some articles in medical journals about sentinel node biopsy in anal mucous melanoma. They discuss if sentinel node biopsy is useful and they don't come to clear conclusions. These are just few.
http://www.jcancer.org/v03p0449.htm
http://nuclmed.web.auth.gr/magazine/eng/jan08/39.pdf
I hope you're doing well. My Mom is after dacarbazine (didn't help) and now after the first dosage of ipi.
Best,
Aleksandra
PS I hope now you have access to my email, I'm more than happy to keep in touch
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- January 8, 2015 at 8:47 pm
Hi Jerry,
what I wrote is based on consultations with different doctors (altogether 5):
1. advised us to have it
2. told us, that the first one practices "academic medicine" and this method is not very trustworthy. Lympha might go to groin nodes (these can be checked), but as well to mesorectum and pelvic ones and there is problem to detect and with some of them to take them out.
3. was of similar opinion as the second one. He summed up, that sentinel node biopsy can be done, but not doing it is not a mistake. His opinion was that radical operation with colostomy and lymhadenoctomy would increase chances much more.
4. advised my penfriend's mother to have sentinel node biopsy and it showed metas in groin nodes. But melanoma was also in pelvic ones which were not showed by sentinel node biopsy.
5. In Dana Faber in Boston doctors told my penfriend's mother not to it (she finally did it as I wrote above).
A year ago, as my mother was diagnosed, I did some research in the Internet and I found some articles in medical journals about sentinel node biopsy in anal mucous melanoma. They discuss if sentinel node biopsy is useful and they don't come to clear conclusions. These are just few.
http://www.jcancer.org/v03p0449.htm
http://nuclmed.web.auth.gr/magazine/eng/jan08/39.pdf
I hope you're doing well. My Mom is after dacarbazine (didn't help) and now after the first dosage of ipi.
Best,
Aleksandra
PS I hope now you have access to my email, I'm more than happy to keep in touch
-
- January 8, 2015 at 8:47 pm
Hi Jerry,
what I wrote is based on consultations with different doctors (altogether 5):
1. advised us to have it
2. told us, that the first one practices "academic medicine" and this method is not very trustworthy. Lympha might go to groin nodes (these can be checked), but as well to mesorectum and pelvic ones and there is problem to detect and with some of them to take them out.
3. was of similar opinion as the second one. He summed up, that sentinel node biopsy can be done, but not doing it is not a mistake. His opinion was that radical operation with colostomy and lymhadenoctomy would increase chances much more.
4. advised my penfriend's mother to have sentinel node biopsy and it showed metas in groin nodes. But melanoma was also in pelvic ones which were not showed by sentinel node biopsy.
5. In Dana Faber in Boston doctors told my penfriend's mother not to it (she finally did it as I wrote above).
A year ago, as my mother was diagnosed, I did some research in the Internet and I found some articles in medical journals about sentinel node biopsy in anal mucous melanoma. They discuss if sentinel node biopsy is useful and they don't come to clear conclusions. These are just few.
http://www.jcancer.org/v03p0449.htm
http://nuclmed.web.auth.gr/magazine/eng/jan08/39.pdf
I hope you're doing well. My Mom is after dacarbazine (didn't help) and now after the first dosage of ipi.
Best,
Aleksandra
PS I hope now you have access to my email, I'm more than happy to keep in touch
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- January 8, 2015 at 8:51 pm
Hi again,
I'm a differetn anonymous, than the one in the post you replied to. But my experience with mucous melanoma and sentinel node biopsy was similar as of the anonymous you repled to to, so I decided to share my thoughts.
Again best,
Aleksandra
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- January 8, 2015 at 8:51 pm
Hi again,
I'm a differetn anonymous, than the one in the post you replied to. But my experience with mucous melanoma and sentinel node biopsy was similar as of the anonymous you repled to to, so I decided to share my thoughts.
Again best,
Aleksandra
-
- January 8, 2015 at 8:51 pm
Hi again,
I'm a differetn anonymous, than the one in the post you replied to. But my experience with mucous melanoma and sentinel node biopsy was similar as of the anonymous you repled to to, so I decided to share my thoughts.
Again best,
Aleksandra
-
- December 22, 2014 at 3:22 pm
What were you expecting should be done differently? Checking the sentinel node is more appropriate for cutaneous melanoma. 6 month scans are certainly not out of the ordinary. There aren't any treatments for stage II melanoma — realistically, the only current "treatment" is for stage IV. Anal melanoma is certainly rare, but you need to understand there are only so many options. Clinical trials or stage IV treatments are really all that exist for melanoma except surgery.
Second opinions are always good, however.
-
- December 22, 2014 at 3:22 pm
What were you expecting should be done differently? Checking the sentinel node is more appropriate for cutaneous melanoma. 6 month scans are certainly not out of the ordinary. There aren't any treatments for stage II melanoma — realistically, the only current "treatment" is for stage IV. Anal melanoma is certainly rare, but you need to understand there are only so many options. Clinical trials or stage IV treatments are really all that exist for melanoma except surgery.
Second opinions are always good, however.
-
- December 23, 2014 at 10:43 am
To me, this sounds pretty standard. My father was Stage III at diagnosis with a clear PET/CT, and the standard of care called for re-checks with the oncologist every six months. Unfortunately, he developed new tumors after five months, and a follow-up scan showed metastases. It's my understanding that PET/CTs are not covered by insurance except when there is reason to suspect disease progression because they are so costly; otherwise, I'm sure they'd be routine. As for the lymph nodes, Dad's doctor checked those during the physical exam in the office. FYI: my dad's onc is one of the leaders in the field.
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- December 23, 2014 at 10:43 am
To me, this sounds pretty standard. My father was Stage III at diagnosis with a clear PET/CT, and the standard of care called for re-checks with the oncologist every six months. Unfortunately, he developed new tumors after five months, and a follow-up scan showed metastases. It's my understanding that PET/CTs are not covered by insurance except when there is reason to suspect disease progression because they are so costly; otherwise, I'm sure they'd be routine. As for the lymph nodes, Dad's doctor checked those during the physical exam in the office. FYI: my dad's onc is one of the leaders in the field.
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- December 23, 2014 at 10:43 am
To me, this sounds pretty standard. My father was Stage III at diagnosis with a clear PET/CT, and the standard of care called for re-checks with the oncologist every six months. Unfortunately, he developed new tumors after five months, and a follow-up scan showed metastases. It's my understanding that PET/CTs are not covered by insurance except when there is reason to suspect disease progression because they are so costly; otherwise, I'm sure they'd be routine. As for the lymph nodes, Dad's doctor checked those during the physical exam in the office. FYI: my dad's onc is one of the leaders in the field.
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- December 31, 2014 at 1:31 am
Full article is interesting.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241890/
"The main conclusion from this multi-center retrospective study patients with metastatic melanoma treated with HD IL-2 is that there was a statistically significant difference in the response rate (CR or PR) based on the tumor mutation status. Patients with NRAS mutations were more than twice as likely to respond to HD IL-2 than patients who were WT for NRAS (47% versus 19%, p=0.04). This is the first time that mutation status has been associated with response to HD IL-2 therapy for melanoma. We also observed a strong trend for a lower chance of response to HD IL2 among patients with elevated serum LDH, which also has not been reported previously."I'm me, not a statistic. Praying to not be one for years yet. -
- December 31, 2014 at 1:31 am
Full article is interesting.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241890/
"The main conclusion from this multi-center retrospective study patients with metastatic melanoma treated with HD IL-2 is that there was a statistically significant difference in the response rate (CR or PR) based on the tumor mutation status. Patients with NRAS mutations were more than twice as likely to respond to HD IL-2 than patients who were WT for NRAS (47% versus 19%, p=0.04). This is the first time that mutation status has been associated with response to HD IL-2 therapy for melanoma. We also observed a strong trend for a lower chance of response to HD IL2 among patients with elevated serum LDH, which also has not been reported previously."I'm me, not a statistic. Praying to not be one for years yet. -
- December 31, 2014 at 1:31 am
Full article is interesting.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241890/
"The main conclusion from this multi-center retrospective study patients with metastatic melanoma treated with HD IL-2 is that there was a statistically significant difference in the response rate (CR or PR) based on the tumor mutation status. Patients with NRAS mutations were more than twice as likely to respond to HD IL-2 than patients who were WT for NRAS (47% versus 19%, p=0.04). This is the first time that mutation status has been associated with response to HD IL-2 therapy for melanoma. We also observed a strong trend for a lower chance of response to HD IL2 among patients with elevated serum LDH, which also has not been reported previously."I'm me, not a statistic. Praying to not be one for years yet. -
- December 31, 2014 at 3:22 am
What does “Access c kit Nras if recurs and follow expectantly.' Mean ?
C-kit and BRAF mutations are believed to be mutually exclusive, having never been found to o be co-located in any melanoma tumor. BRAF and NRAS mutations have, at times, been found to be co-located in ones tumors.
As far as timing on the emergence of the melanoma tumors from the anus to the groin lymph nodes to the lungs, Yes, that can occur almost together. My local surgeon never did any follow up after my second anal operation in July 2006 I found the melanoma in my groin lymph nodes within 5 months myself . A PET scan in late Jan (after the groin operation) said my lungs were clear. My “new” experienced melanoma specialist surgeon and researcher had an x-ray done to check on the lungs a month after the groin operation, since this was the most likely location for melanoma to appear next. . The x-ray in late February said something was suspicious. The CT in early March 2007 said innumerable, rapidly growing melanoma tumors were then present in both lungs.
With ulceration and a mitosis rate greater than one, there should have been a consistent followup on the groin nodes and the lungs. This was poor followup. I had ulceration and a low mitotic rate.
Gleevec, has converted most GIST cases from an immediately catastrophic cancer into an ongoing manageable chronic problem. (Gleevec is still not FDA approved for c-kit melanoma.) I have been stable for 5 ¾ years now on the off-label usage of Gleevec for my c-kit melnoma. All growth, of all the doubly innumerable tumors, ceased withing 30 days of starting the cyctostatic targeted chemo, Gleevec. I still here, still stable. Would like further personal contct on mucosale melanoma followup.
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- December 31, 2014 at 3:22 am
What does “Access c kit Nras if recurs and follow expectantly.' Mean ?
C-kit and BRAF mutations are believed to be mutually exclusive, having never been found to o be co-located in any melanoma tumor. BRAF and NRAS mutations have, at times, been found to be co-located in ones tumors.
As far as timing on the emergence of the melanoma tumors from the anus to the groin lymph nodes to the lungs, Yes, that can occur almost together. My local surgeon never did any follow up after my second anal operation in July 2006 I found the melanoma in my groin lymph nodes within 5 months myself . A PET scan in late Jan (after the groin operation) said my lungs were clear. My “new” experienced melanoma specialist surgeon and researcher had an x-ray done to check on the lungs a month after the groin operation, since this was the most likely location for melanoma to appear next. . The x-ray in late February said something was suspicious. The CT in early March 2007 said innumerable, rapidly growing melanoma tumors were then present in both lungs.
With ulceration and a mitosis rate greater than one, there should have been a consistent followup on the groin nodes and the lungs. This was poor followup. I had ulceration and a low mitotic rate.
Gleevec, has converted most GIST cases from an immediately catastrophic cancer into an ongoing manageable chronic problem. (Gleevec is still not FDA approved for c-kit melanoma.) I have been stable for 5 ¾ years now on the off-label usage of Gleevec for my c-kit melnoma. All growth, of all the doubly innumerable tumors, ceased withing 30 days of starting the cyctostatic targeted chemo, Gleevec. I still here, still stable. Would like further personal contct on mucosale melanoma followup.
-
- December 31, 2014 at 3:22 am
What does “Access c kit Nras if recurs and follow expectantly.' Mean ?
C-kit and BRAF mutations are believed to be mutually exclusive, having never been found to o be co-located in any melanoma tumor. BRAF and NRAS mutations have, at times, been found to be co-located in ones tumors.
As far as timing on the emergence of the melanoma tumors from the anus to the groin lymph nodes to the lungs, Yes, that can occur almost together. My local surgeon never did any follow up after my second anal operation in July 2006 I found the melanoma in my groin lymph nodes within 5 months myself . A PET scan in late Jan (after the groin operation) said my lungs were clear. My “new” experienced melanoma specialist surgeon and researcher had an x-ray done to check on the lungs a month after the groin operation, since this was the most likely location for melanoma to appear next. . The x-ray in late February said something was suspicious. The CT in early March 2007 said innumerable, rapidly growing melanoma tumors were then present in both lungs.
With ulceration and a mitosis rate greater than one, there should have been a consistent followup on the groin nodes and the lungs. This was poor followup. I had ulceration and a low mitotic rate.
Gleevec, has converted most GIST cases from an immediately catastrophic cancer into an ongoing manageable chronic problem. (Gleevec is still not FDA approved for c-kit melanoma.) I have been stable for 5 ¾ years now on the off-label usage of Gleevec for my c-kit melnoma. All growth, of all the doubly innumerable tumors, ceased withing 30 days of starting the cyctostatic targeted chemo, Gleevec. I still here, still stable. Would like further personal contct on mucosale melanoma followup.
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- January 9, 2015 at 1:02 pm
Thanks so much Jerry. Thankfully my father is finally getting another opinion from Dr Gary Schwartz who just left Sloan as the chief melanoma specialist. Not that it is metastatic, numerous lesions in lungs on chest wall cavity, I fear it's even spread further since the scan in early December. Pecora has suggested he start Yervoy and also mentioned a clinical study in which he would be getting either additional Yervoy or Avastin. I have no faith in Pecora so am anxiously awaiting what Dr Schwartz recommends.
I will have my father ask about Gleevac too.
Be well.
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- January 9, 2015 at 1:02 pm
Thanks so much Jerry. Thankfully my father is finally getting another opinion from Dr Gary Schwartz who just left Sloan as the chief melanoma specialist. Not that it is metastatic, numerous lesions in lungs on chest wall cavity, I fear it's even spread further since the scan in early December. Pecora has suggested he start Yervoy and also mentioned a clinical study in which he would be getting either additional Yervoy or Avastin. I have no faith in Pecora so am anxiously awaiting what Dr Schwartz recommends.
I will have my father ask about Gleevac too.
Be well.
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- January 9, 2015 at 1:02 pm
Thanks so much Jerry. Thankfully my father is finally getting another opinion from Dr Gary Schwartz who just left Sloan as the chief melanoma specialist. Not that it is metastatic, numerous lesions in lungs on chest wall cavity, I fear it's even spread further since the scan in early December. Pecora has suggested he start Yervoy and also mentioned a clinical study in which he would be getting either additional Yervoy or Avastin. I have no faith in Pecora so am anxiously awaiting what Dr Schwartz recommends.
I will have my father ask about Gleevac too.
Be well.
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