› Forums › General Melanoma Community › Newly Diagnosed with Anal Melanoma
- This topic has 39 replies, 9 voices, and was last updated 7 years, 7 months ago by
Momofjake.
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- September 23, 2016 at 7:04 am
My mother was diagnosed on September 6 with Anal Melanoma. After CT/MR/PET scans, we have learned that the mass is 4 cm and that it has spread to her inguinal lymph nodes, but nowhere else. The doctor told me that she has 10-15 months due to micro metasteses, which broke our hearts. However, I see that there are a lot of long term survivors on this message board.
Does anyone know of a survivor with a mass as large as 4cm? Even the cutoff on the drop down menu is 4mm, not cm.
My mother is also afraid of an APR, especially since the doctor told us that he wouldn't recommend it since it won't extend her life.
We are part of Kaiser Permanente, which does not seem to be very specialized in this area, but since it's a closed network I'm having a difficult time trying to get them to agree to giving her a second opinion at one of the bigger institutes I see all over these boards(EX: Dana Farber, MD Anderson, Sloan Kettering).
We have also put her on a vegetable-heavy vegan diet for the time being. We figure this can't hurt.
- Replies
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- September 23, 2016 at 12:15 pm
Hi Cindy,
What a shock for both of you.
This is important. Get that second opinion. This is a rare form of melanoma.. You need the advice of experts in this area.
Treatments are possible with a 4cm primary and spread to lymph nodes.
Could be surgery, targeted therapy, radiation or immunotherapy or a combo of these.Don't look at survival stats. Newer therapies mean these are outdated, in light of progress in treatments and in anycase your cancer is unique to you …no matter what the statistics say.
Wishing you the best of luck in getting the best treatment and don't be afraid to consider clinical trials as they may give you access to the latest drugs prior to Fda approval.
Good for you for being a loving and supportive daughter. There are many knowledgeable folk on these boards whoyou may find helpful when considering treatment alternatives. Hang on in there and keep pressing hard for that urgent second opinion.
Deb
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- September 23, 2016 at 12:58 pm
I looked up the second opinion policy for Kaiser Permanente – they will pay for one outside of the network with prior authorization. Keep pushing and do not take no for an answer.
Major cancer centers such as the ones you listed are exactly where you need to be.
Best wishes.
Mary
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- September 23, 2016 at 12:58 pm
I looked up the second opinion policy for Kaiser Permanente – they will pay for one outside of the network with prior authorization. Keep pushing and do not take no for an answer.
Major cancer centers such as the ones you listed are exactly where you need to be.
Best wishes.
Mary
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- September 23, 2016 at 12:58 pm
I looked up the second opinion policy for Kaiser Permanente – they will pay for one outside of the network with prior authorization. Keep pushing and do not take no for an answer.
Major cancer centers such as the ones you listed are exactly where you need to be.
Best wishes.
Mary
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- September 23, 2016 at 12:15 pm
Hi Cindy,
What a shock for both of you.
This is important. Get that second opinion. This is a rare form of melanoma.. You need the advice of experts in this area.
Treatments are possible with a 4cm primary and spread to lymph nodes.
Could be surgery, targeted therapy, radiation or immunotherapy or a combo of these.Don't look at survival stats. Newer therapies mean these are outdated, in light of progress in treatments and in anycase your cancer is unique to you …no matter what the statistics say.
Wishing you the best of luck in getting the best treatment and don't be afraid to consider clinical trials as they may give you access to the latest drugs prior to Fda approval.
Good for you for being a loving and supportive daughter. There are many knowledgeable folk on these boards whoyou may find helpful when considering treatment alternatives. Hang on in there and keep pressing hard for that urgent second opinion.
Deb
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- September 23, 2016 at 12:15 pm
Hi Cindy,
What a shock for both of you.
This is important. Get that second opinion. This is a rare form of melanoma.. You need the advice of experts in this area.
Treatments are possible with a 4cm primary and spread to lymph nodes.
Could be surgery, targeted therapy, radiation or immunotherapy or a combo of these.Don't look at survival stats. Newer therapies mean these are outdated, in light of progress in treatments and in anycase your cancer is unique to you …no matter what the statistics say.
Wishing you the best of luck in getting the best treatment and don't be afraid to consider clinical trials as they may give you access to the latest drugs prior to Fda approval.
Good for you for being a loving and supportive daughter. There are many knowledgeable folk on these boards whoyou may find helpful when considering treatment alternatives. Hang on in there and keep pressing hard for that urgent second opinion.
Deb
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- September 23, 2016 at 1:55 pm
The 4mm only applies to "cutaneous" melanoma, not mucosal melanoma. Anal melanoma is mucosal melanoma. On this board, you can search for old posts by JerryFromFauq who also had mucosal melanoma / anal. You should make sure your mother is tested for the C-Kit mutation. That can be found in mucosal melanoma and Gleevec is a treatment that can be effective for this mutation. If you are with Kaiser in CA, I'd suggest trying to get a 2nd opinion at UCSF or one of the LA clinics. Might be easier to convince them of a local 2nd opinion and might also be easier to coordinate any treatments. DEFINITELY GET A SECOND OPINION!!!!
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- September 23, 2016 at 1:55 pm
The 4mm only applies to "cutaneous" melanoma, not mucosal melanoma. Anal melanoma is mucosal melanoma. On this board, you can search for old posts by JerryFromFauq who also had mucosal melanoma / anal. You should make sure your mother is tested for the C-Kit mutation. That can be found in mucosal melanoma and Gleevec is a treatment that can be effective for this mutation. If you are with Kaiser in CA, I'd suggest trying to get a 2nd opinion at UCSF or one of the LA clinics. Might be easier to convince them of a local 2nd opinion and might also be easier to coordinate any treatments. DEFINITELY GET A SECOND OPINION!!!!
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- September 23, 2016 at 1:55 pm
The 4mm only applies to "cutaneous" melanoma, not mucosal melanoma. Anal melanoma is mucosal melanoma. On this board, you can search for old posts by JerryFromFauq who also had mucosal melanoma / anal. You should make sure your mother is tested for the C-Kit mutation. That can be found in mucosal melanoma and Gleevec is a treatment that can be effective for this mutation. If you are with Kaiser in CA, I'd suggest trying to get a 2nd opinion at UCSF or one of the LA clinics. Might be easier to convince them of a local 2nd opinion and might also be easier to coordinate any treatments. DEFINITELY GET A SECOND OPINION!!!!
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- September 23, 2016 at 5:34 pm
I had Kaiser when I was diagnosed. I immediately jumped on them for quick appointments (because they are SO relaxed when it comes to that stuff) and for a second opinion at UCSF Melanoma Center since I am in the Bay Area, CA and San Francisco is only a 45 minute drive for me. They gave me the approval for the second opinion, I LOVED my first appointment at UCSF, their knowledge FAR exceeded anything I had experienced at Kaiser, and thankfully being diagnosed in November, I was able to switch insurance companies and went to a PPO so I could be seen at UCSF full time. Kaiser will work with you, sometimes it takes a professional and almost legal sounding letter to get their butts in gear and know you mean business.
Your mom abosolutely needs a melanoma specialist.
This community is a great resource for you, I am glad you found it.
All the best,
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- September 23, 2016 at 5:34 pm
I had Kaiser when I was diagnosed. I immediately jumped on them for quick appointments (because they are SO relaxed when it comes to that stuff) and for a second opinion at UCSF Melanoma Center since I am in the Bay Area, CA and San Francisco is only a 45 minute drive for me. They gave me the approval for the second opinion, I LOVED my first appointment at UCSF, their knowledge FAR exceeded anything I had experienced at Kaiser, and thankfully being diagnosed in November, I was able to switch insurance companies and went to a PPO so I could be seen at UCSF full time. Kaiser will work with you, sometimes it takes a professional and almost legal sounding letter to get their butts in gear and know you mean business.
Your mom abosolutely needs a melanoma specialist.
This community is a great resource for you, I am glad you found it.
All the best,
-
- September 23, 2016 at 5:34 pm
I had Kaiser when I was diagnosed. I immediately jumped on them for quick appointments (because they are SO relaxed when it comes to that stuff) and for a second opinion at UCSF Melanoma Center since I am in the Bay Area, CA and San Francisco is only a 45 minute drive for me. They gave me the approval for the second opinion, I LOVED my first appointment at UCSF, their knowledge FAR exceeded anything I had experienced at Kaiser, and thankfully being diagnosed in November, I was able to switch insurance companies and went to a PPO so I could be seen at UCSF full time. Kaiser will work with you, sometimes it takes a professional and almost legal sounding letter to get their butts in gear and know you mean business.
Your mom abosolutely needs a melanoma specialist.
This community is a great resource for you, I am glad you found it.
All the best,
-
- September 24, 2016 at 4:16 am
Cindy, so sorry to hear about your mom, but agree with all here that a second opinion is a must. I too have mucosal melanoma and suggest Dr. Scharfman at Dana Farber for a second opinion if you can get her to the east coast, or a melanoma specialist near you. For her doctor to predict 10-15 months without even starting treatment seems like missing the mark from the hop. Also are you sure the tumor is cm and not mm? That's another reason for a second opinion, and she'll need a top rectal surgeon as well.
Even if she ends up limited by her insurance on where she can go for treatment, FDA approved the ipi/nivo combo which she needs to get on asap and any oncologist can order. And while the lymph node spread is troublesome, it may be what the insurance needs to approve the immunotherapy, plus it's a good sign the rest of her body is clear so her tumor burden is low which will allow the immunotherapy to take its best shot. There's definitely hope!!
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- September 24, 2016 at 4:16 am
Cindy, so sorry to hear about your mom, but agree with all here that a second opinion is a must. I too have mucosal melanoma and suggest Dr. Scharfman at Dana Farber for a second opinion if you can get her to the east coast, or a melanoma specialist near you. For her doctor to predict 10-15 months without even starting treatment seems like missing the mark from the hop. Also are you sure the tumor is cm and not mm? That's another reason for a second opinion, and she'll need a top rectal surgeon as well.
Even if she ends up limited by her insurance on where she can go for treatment, FDA approved the ipi/nivo combo which she needs to get on asap and any oncologist can order. And while the lymph node spread is troublesome, it may be what the insurance needs to approve the immunotherapy, plus it's a good sign the rest of her body is clear so her tumor burden is low which will allow the immunotherapy to take its best shot. There's definitely hope!!
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- September 24, 2016 at 6:05 am
Hi Everyone,
Thank you for your kind responses. We do feel better knowing that there is hope in spite of what we were told by the first surgeon. After the initial shock of the prognosis, we are trying to be proactive and doing as m much research as we can about treatment options.
Yes, her tumor is 4 cm, which is larger than the other ones I've seen in these forums. It is so large that the oncologist is concerned that it has penetrated through the rectal wall, which would mean that it has spread into the tissue. We won't know until her surgery, but that will determine whether she is stage III or stage IV.
Because time is off the essence, we will probably get the surgery done through Kaiser, which doesn't have a lot of options when it comes to surgical oncologists. Our other option is to go with a general colon and rectal surgeon, which our oncologist does not recommend.
I did ask the oncologist today about ipi/nivo, but he thinks she would be a better candidate for Keytruda. Has anyone here had any experience with Keytruda?
Thank you again for your help. Any and all information is greatly appreciated.
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- September 24, 2016 at 6:05 am
Hi Everyone,
Thank you for your kind responses. We do feel better knowing that there is hope in spite of what we were told by the first surgeon. After the initial shock of the prognosis, we are trying to be proactive and doing as m much research as we can about treatment options.
Yes, her tumor is 4 cm, which is larger than the other ones I've seen in these forums. It is so large that the oncologist is concerned that it has penetrated through the rectal wall, which would mean that it has spread into the tissue. We won't know until her surgery, but that will determine whether she is stage III or stage IV.
Because time is off the essence, we will probably get the surgery done through Kaiser, which doesn't have a lot of options when it comes to surgical oncologists. Our other option is to go with a general colon and rectal surgeon, which our oncologist does not recommend.
I did ask the oncologist today about ipi/nivo, but he thinks she would be a better candidate for Keytruda. Has anyone here had any experience with Keytruda?
Thank you again for your help. Any and all information is greatly appreciated.
-
- September 24, 2016 at 2:52 pm
Keytruda, is another Pd-1 drug by Merck that is similiar to Nivo which is made by Bristol Myer Squibb. The advice that many Oncologist will suggest at this point, is it better to go with a Pd-1 drug as a monotherapy(Nivo or Pembro) with side effects that for most patients is pretty easy to handle and is effective for about 40% of patients or be more aggressive with the combination which works much better (mid 50's%) but has a higher side effect profile. A melanoma specialist is really the best choice at this point! Best Wishes!!! Ed
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- September 24, 2016 at 2:52 pm
Keytruda, is another Pd-1 drug by Merck that is similiar to Nivo which is made by Bristol Myer Squibb. The advice that many Oncologist will suggest at this point, is it better to go with a Pd-1 drug as a monotherapy(Nivo or Pembro) with side effects that for most patients is pretty easy to handle and is effective for about 40% of patients or be more aggressive with the combination which works much better (mid 50's%) but has a higher side effect profile. A melanoma specialist is really the best choice at this point! Best Wishes!!! Ed
-
- September 24, 2016 at 2:52 pm
Keytruda, is another Pd-1 drug by Merck that is similiar to Nivo which is made by Bristol Myer Squibb. The advice that many Oncologist will suggest at this point, is it better to go with a Pd-1 drug as a monotherapy(Nivo or Pembro) with side effects that for most patients is pretty easy to handle and is effective for about 40% of patients or be more aggressive with the combination which works much better (mid 50's%) but has a higher side effect profile. A melanoma specialist is really the best choice at this point! Best Wishes!!! Ed
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- September 24, 2016 at 7:32 pm
You also might want to take a look at this video from Onclive which features Dr. Jeffrey Weber and Dr. Jason Luke. https://www.youtube.com/watch?v=RIaGfNsG6w4
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- September 24, 2016 at 7:32 pm
You also might want to take a look at this video from Onclive which features Dr. Jeffrey Weber and Dr. Jason Luke. https://www.youtube.com/watch?v=RIaGfNsG6w4
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- September 24, 2016 at 7:32 pm
You also might want to take a look at this video from Onclive which features Dr. Jeffrey Weber and Dr. Jason Luke. https://www.youtube.com/watch?v=RIaGfNsG6w4
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- September 24, 2016 at 6:05 am
Hi Everyone,
Thank you for your kind responses. We do feel better knowing that there is hope in spite of what we were told by the first surgeon. After the initial shock of the prognosis, we are trying to be proactive and doing as m much research as we can about treatment options.
Yes, her tumor is 4 cm, which is larger than the other ones I've seen in these forums. It is so large that the oncologist is concerned that it has penetrated through the rectal wall, which would mean that it has spread into the tissue. We won't know until her surgery, but that will determine whether she is stage III or stage IV.
Because time is off the essence, we will probably get the surgery done through Kaiser, which doesn't have a lot of options when it comes to surgical oncologists. Our other option is to go with a general colon and rectal surgeon, which our oncologist does not recommend.
I did ask the oncologist today about ipi/nivo, but he thinks she would be a better candidate for Keytruda. Has anyone here had any experience with Keytruda?
Thank you again for your help. Any and all information is greatly appreciated.
-
- September 24, 2016 at 4:16 am
Cindy, so sorry to hear about your mom, but agree with all here that a second opinion is a must. I too have mucosal melanoma and suggest Dr. Scharfman at Dana Farber for a second opinion if you can get her to the east coast, or a melanoma specialist near you. For her doctor to predict 10-15 months without even starting treatment seems like missing the mark from the hop. Also are you sure the tumor is cm and not mm? That's another reason for a second opinion, and she'll need a top rectal surgeon as well.
Even if she ends up limited by her insurance on where she can go for treatment, FDA approved the ipi/nivo combo which she needs to get on asap and any oncologist can order. And while the lymph node spread is troublesome, it may be what the insurance needs to approve the immunotherapy, plus it's a good sign the rest of her body is clear so her tumor burden is low which will allow the immunotherapy to take its best shot. There's definitely hope!!
-
- September 24, 2016 at 6:29 pm
Hi Cindy,
Regarding the tumor size. Just to let you know many folks here have or had tumors that size, or larger. While my mel is cutaneous, not mucosal, I think every tumor that I have dealt with was well over 4cm. Most of mine have been in the 6-8cm range, and I'm currently dealing with a whopper measuring more than 14cm. I'm still here, just about at the 4-year mark since diagnosis. There are options and treatments, getting your Mom to a specialist will change your view on a great many things.
Gary
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- September 24, 2016 at 6:29 pm
Hi Cindy,
Regarding the tumor size. Just to let you know many folks here have or had tumors that size, or larger. While my mel is cutaneous, not mucosal, I think every tumor that I have dealt with was well over 4cm. Most of mine have been in the 6-8cm range, and I'm currently dealing with a whopper measuring more than 14cm. I'm still here, just about at the 4-year mark since diagnosis. There are options and treatments, getting your Mom to a specialist will change your view on a great many things.
Gary
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- September 24, 2016 at 11:11 pm
I think 4 CM for a primary mucosal is extremely large, which is why her doctor at Kaiser has written her off. So far it seems like she will be forced to get an APR resection with a permanent stoma bag, which really frightens her and make take some time to get used to that idea.
Since her biopsy, she has had a lot of pain and cannot sit or stand for longer than 30 minutes. She spends most of her day lying down and doing sitz baths for the pain (she cannot take any prescription anti-pain medication because it hardens her stool). She is often fatigued and often bleeds from anal region due to the tumor, which is very scary for her. Before the biopsy, she had some discomfort, but was able to go to work and for the most part regular day-to-day activities, which was better for her state of mind. It has been devastating for us to see her this way and we are just trying to navigate this process.
Thank you again everyone for sharing your experience.
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- September 25, 2016 at 2:34 am
They will not prescribe a stool softener to take with a narcotic pain medication? Most of the time that is the case, maybe ask her doctor if that's a possibility? I can't imagine being in pain and so uncomfortable along with having to deal with the mental aspect of wrapping your head around the whole situation.
I'd take whatever the Kaiser doctor has said with a grain of salt, only because it's very likely they have not dealt with many or any mucosal melanoma patients and are very much in over their head at this point. A melanoma specialist will know every aspect of it and be able to give you very real information and treatment options.
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- September 25, 2016 at 2:34 am
They will not prescribe a stool softener to take with a narcotic pain medication? Most of the time that is the case, maybe ask her doctor if that's a possibility? I can't imagine being in pain and so uncomfortable along with having to deal with the mental aspect of wrapping your head around the whole situation.
I'd take whatever the Kaiser doctor has said with a grain of salt, only because it's very likely they have not dealt with many or any mucosal melanoma patients and are very much in over their head at this point. A melanoma specialist will know every aspect of it and be able to give you very real information and treatment options.
-
- September 25, 2016 at 2:34 am
They will not prescribe a stool softener to take with a narcotic pain medication? Most of the time that is the case, maybe ask her doctor if that's a possibility? I can't imagine being in pain and so uncomfortable along with having to deal with the mental aspect of wrapping your head around the whole situation.
I'd take whatever the Kaiser doctor has said with a grain of salt, only because it's very likely they have not dealt with many or any mucosal melanoma patients and are very much in over their head at this point. A melanoma specialist will know every aspect of it and be able to give you very real information and treatment options.
-
- September 24, 2016 at 11:11 pm
I think 4 CM for a primary mucosal is extremely large, which is why her doctor at Kaiser has written her off. So far it seems like she will be forced to get an APR resection with a permanent stoma bag, which really frightens her and make take some time to get used to that idea.
Since her biopsy, she has had a lot of pain and cannot sit or stand for longer than 30 minutes. She spends most of her day lying down and doing sitz baths for the pain (she cannot take any prescription anti-pain medication because it hardens her stool). She is often fatigued and often bleeds from anal region due to the tumor, which is very scary for her. Before the biopsy, she had some discomfort, but was able to go to work and for the most part regular day-to-day activities, which was better for her state of mind. It has been devastating for us to see her this way and we are just trying to navigate this process.
Thank you again everyone for sharing your experience.
-
- September 24, 2016 at 11:11 pm
I think 4 CM for a primary mucosal is extremely large, which is why her doctor at Kaiser has written her off. So far it seems like she will be forced to get an APR resection with a permanent stoma bag, which really frightens her and make take some time to get used to that idea.
Since her biopsy, she has had a lot of pain and cannot sit or stand for longer than 30 minutes. She spends most of her day lying down and doing sitz baths for the pain (she cannot take any prescription anti-pain medication because it hardens her stool). She is often fatigued and often bleeds from anal region due to the tumor, which is very scary for her. Before the biopsy, she had some discomfort, but was able to go to work and for the most part regular day-to-day activities, which was better for her state of mind. It has been devastating for us to see her this way and we are just trying to navigate this process.
Thank you again everyone for sharing your experience.
-
- September 24, 2016 at 6:29 pm
Hi Cindy,
Regarding the tumor size. Just to let you know many folks here have or had tumors that size, or larger. While my mel is cutaneous, not mucosal, I think every tumor that I have dealt with was well over 4cm. Most of mine have been in the 6-8cm range, and I'm currently dealing with a whopper measuring more than 14cm. I'm still here, just about at the 4-year mark since diagnosis. There are options and treatments, getting your Mom to a specialist will change your view on a great many things.
Gary
-
- September 25, 2016 at 11:22 am
Sorry to hear about your mom. The weeks following diagnosis are difficult. You are launched into a new world. Fear and heartache can run the show. The sooner you can take a breath, stop listening to stats, and get your brain straight the sooner you will get to good treatments! There are people responding to many different therapies for many years! Life is changed, you will be navigating pain, side effects, and lots of big decisions. It will be hard to watch. But…you will find a way and you will get strong fast for her. Our loved ones need us to be clear minded and be their advocate as they struggle through this. Go find that second opinion! Go find the best immune therapy etc! And remember we can't judge how anyone does this. My 19 yr old son says, "we just know what we need to do". I help him find what's available, then he chooses! You got this. Love and prayers! Sorry you are here. Kerri
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- September 25, 2016 at 11:25 am
By the way, KEYTRUDA is good. Jake was on it 9 mo. He was not a good responder, but many are. Look into a combo. I feel the earlier you do combos the better. Your body is healthier to take the side effects:)
a specialist will be helpful here!
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- September 25, 2016 at 11:25 am
By the way, KEYTRUDA is good. Jake was on it 9 mo. He was not a good responder, but many are. Look into a combo. I feel the earlier you do combos the better. Your body is healthier to take the side effects:)
a specialist will be helpful here!
-
- September 25, 2016 at 11:25 am
By the way, KEYTRUDA is good. Jake was on it 9 mo. He was not a good responder, but many are. Look into a combo. I feel the earlier you do combos the better. Your body is healthier to take the side effects:)
a specialist will be helpful here!
-
- September 25, 2016 at 11:22 am
Sorry to hear about your mom. The weeks following diagnosis are difficult. You are launched into a new world. Fear and heartache can run the show. The sooner you can take a breath, stop listening to stats, and get your brain straight the sooner you will get to good treatments! There are people responding to many different therapies for many years! Life is changed, you will be navigating pain, side effects, and lots of big decisions. It will be hard to watch. But…you will find a way and you will get strong fast for her. Our loved ones need us to be clear minded and be their advocate as they struggle through this. Go find that second opinion! Go find the best immune therapy etc! And remember we can't judge how anyone does this. My 19 yr old son says, "we just know what we need to do". I help him find what's available, then he chooses! You got this. Love and prayers! Sorry you are here. Kerri
-
- September 25, 2016 at 11:22 am
Sorry to hear about your mom. The weeks following diagnosis are difficult. You are launched into a new world. Fear and heartache can run the show. The sooner you can take a breath, stop listening to stats, and get your brain straight the sooner you will get to good treatments! There are people responding to many different therapies for many years! Life is changed, you will be navigating pain, side effects, and lots of big decisions. It will be hard to watch. But…you will find a way and you will get strong fast for her. Our loved ones need us to be clear minded and be their advocate as they struggle through this. Go find that second opinion! Go find the best immune therapy etc! And remember we can't judge how anyone does this. My 19 yr old son says, "we just know what we need to do". I help him find what's available, then he chooses! You got this. Love and prayers! Sorry you are here. Kerri
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