› Forums › Mucosal Melanoma Community › Mucosal Melanoma
- This topic has 25 replies, 7 voices, and was last updated 6 years ago by
Lisa Haywood.
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- November 7, 2015 at 1:19 pm
Hi, all,
I posted about a week ago for the first time, wondering if there were people reading who have mucosal melanoma. Mine is in the maxillary sinus & was diagnosed in May of this year; started Ipi/Nivo soon after but had to stop after only two infusions due to severe side effects and hospitalization. Am now on Pembrolizumab (Keytruda) & so far tolerating it. Would be very eager to hear of others who have MM, what your treatment is, how it's going, how you are managing the side effects, etc. Unfortunately it's only 1% of all melanomas and so there's far less statistical history and information tha for the other 99%!
I read this and several other patient-based cancer sites/blogs regularly and am contnually moved and uplifted by so many patients' courage, determination and – in the face of this awful disease – humor. I pray for everyone's peace, comfort and improvement. Chris
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- November 7, 2015 at 5:17 pm
Chris
You may want to check out this blog…I think Marcus also posts here occasionally
http://marcuscancervive.tumblr.com/
My son was dx at age 21 with oral melanoma..(toungue). He went through a year of interfeon, but has been cancer free for 6 years!
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- November 7, 2015 at 5:17 pm
Chris
You may want to check out this blog…I think Marcus also posts here occasionally
http://marcuscancervive.tumblr.com/
My son was dx at age 21 with oral melanoma..(toungue). He went through a year of interfeon, but has been cancer free for 6 years!
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- November 8, 2015 at 3:12 pm
Becky, thanks so much for your reply. It is such terrific news to know that your son is 6 years out cancer free! And also thanks for the reference to Marcus' blog – I went to it and reviewed the entire two years -so many of the side effects similar to mine – esp. to Ipilimumab. I'll be in touch with Marcus soon. Best wishes to you, your son and the rest of your family. Chris
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- November 8, 2015 at 3:12 pm
Becky, thanks so much for your reply. It is such terrific news to know that your son is 6 years out cancer free! And also thanks for the reference to Marcus' blog – I went to it and reviewed the entire two years -so many of the side effects similar to mine – esp. to Ipilimumab. I'll be in touch with Marcus soon. Best wishes to you, your son and the rest of your family. Chris
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- November 8, 2015 at 3:12 pm
Becky, thanks so much for your reply. It is such terrific news to know that your son is 6 years out cancer free! And also thanks for the reference to Marcus' blog – I went to it and reviewed the entire two years -so many of the side effects similar to mine – esp. to Ipilimumab. I'll be in touch with Marcus soon. Best wishes to you, your son and the rest of your family. Chris
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- November 7, 2015 at 5:17 pm
Chris
You may want to check out this blog…I think Marcus also posts here occasionally
http://marcuscancervive.tumblr.com/
My son was dx at age 21 with oral melanoma..(toungue). He went through a year of interfeon, but has been cancer free for 6 years!
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- November 8, 2015 at 2:26 pm
Hi Chrisholder,
You definitely aren't being ignored, there just aren't many of us here. I have been here a few years and there have only ever been maybe 3 or 4 of us posting periodically when mucosal melanoma questions come up. The same seems true for other melanoma forums too. But it's just as you say, mucosal melanoma is uncommon and it is not all that easy to find people with the same type of cancer, let alone the same subtype of mucosal melanoma (oral, anal, etc), the same stage or with similar circumstances. Mine is stage I to II vulvar, and though I have had 3 surgeries, no treatment was offered to me beyond the surgeries and close followup. I am about 2-1/2 years out and so far my scans are clear. I know we have another member with stage III, but I am not sure we have anyone stage IV undergoing treatment. If we do, I hope they'll post. I personally am hopeful about Keytruda, much more so than Yervoy, for MM.
I will follow this thread too as it would be so nice to hear from others.
Best wishes, and hope the Keytruda works well for you!
Cheri
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- November 8, 2015 at 3:23 pm
Hi, Cheri,
Thanks so much for posting your reply. It is such good, reassuring news to know that you are two and a half years out with clear scans – that is wonderful! And…with only surgeries. Given the rarity of MM, it is always informative to hear of others' struggles with the disease – but especially their successes! Yes, indeed, Ipi (Yervoy) has quite a reputation for severe side effects, and I, too, am hopeful that Pembro (Keytruda) will help in my situation – it clearly has for many others. I'll post from time to time to report updates on infusions and scans.
Best wishes and continued good health to you! Chris
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- November 8, 2015 at 3:23 pm
Hi, Cheri,
Thanks so much for posting your reply. It is such good, reassuring news to know that you are two and a half years out with clear scans – that is wonderful! And…with only surgeries. Given the rarity of MM, it is always informative to hear of others' struggles with the disease – but especially their successes! Yes, indeed, Ipi (Yervoy) has quite a reputation for severe side effects, and I, too, am hopeful that Pembro (Keytruda) will help in my situation – it clearly has for many others. I'll post from time to time to report updates on infusions and scans.
Best wishes and continued good health to you! Chris
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- November 9, 2015 at 1:53 am
Hi Chris,
My mom also has mm and was treated with surgery only for 3 years but that wore her out. She was treated with yervoy this past March, she ended up hospitalized with respiratory failure (also has copd) for 2 weeks.
Unfortunately she had a brain met diagnosed in August. It was caught very early and operable so she had it removed at end of August and is now about to receive her second dose of keytruda.
We are so hopeful this drug will improve her quality of life. I'm watching her closely while also trying to give her space 😉 She still hasn't gained back any weight from the spring but we'll see how this goes!
Good luck to you!
Bridget
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- November 9, 2015 at 1:53 am
Hi Chris,
My mom also has mm and was treated with surgery only for 3 years but that wore her out. She was treated with yervoy this past March, she ended up hospitalized with respiratory failure (also has copd) for 2 weeks.
Unfortunately she had a brain met diagnosed in August. It was caught very early and operable so she had it removed at end of August and is now about to receive her second dose of keytruda.
We are so hopeful this drug will improve her quality of life. I'm watching her closely while also trying to give her space 😉 She still hasn't gained back any weight from the spring but we'll see how this goes!
Good luck to you!
Bridget
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- November 9, 2015 at 1:53 am
Hi Chris,
My mom also has mm and was treated with surgery only for 3 years but that wore her out. She was treated with yervoy this past March, she ended up hospitalized with respiratory failure (also has copd) for 2 weeks.
Unfortunately she had a brain met diagnosed in August. It was caught very early and operable so she had it removed at end of August and is now about to receive her second dose of keytruda.
We are so hopeful this drug will improve her quality of life. I'm watching her closely while also trying to give her space 😉 She still hasn't gained back any weight from the spring but we'll see how this goes!
Good luck to you!
Bridget
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- November 8, 2015 at 3:23 pm
Hi, Cheri,
Thanks so much for posting your reply. It is such good, reassuring news to know that you are two and a half years out with clear scans – that is wonderful! And…with only surgeries. Given the rarity of MM, it is always informative to hear of others' struggles with the disease – but especially their successes! Yes, indeed, Ipi (Yervoy) has quite a reputation for severe side effects, and I, too, am hopeful that Pembro (Keytruda) will help in my situation – it clearly has for many others. I'll post from time to time to report updates on infusions and scans.
Best wishes and continued good health to you! Chris
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- April 17, 2018 at 6:35 pm
Hi Cheri! Let me add one more voice to the very small chorus. I just got diagnosed in March with stage II vulvar mucosal melanoma. I had 28 lymph nodes removed last Wednesday and my doctor is recommending Keytruda. I would love to hear other people’s experiences with this drug.
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- November 8, 2015 at 2:26 pm
Hi Chrisholder,
You definitely aren't being ignored, there just aren't many of us here. I have been here a few years and there have only ever been maybe 3 or 4 of us posting periodically when mucosal melanoma questions come up. The same seems true for other melanoma forums too. But it's just as you say, mucosal melanoma is uncommon and it is not all that easy to find people with the same type of cancer, let alone the same subtype of mucosal melanoma (oral, anal, etc), the same stage or with similar circumstances. Mine is stage I to II vulvar, and though I have had 3 surgeries, no treatment was offered to me beyond the surgeries and close followup. I am about 2-1/2 years out and so far my scans are clear. I know we have another member with stage III, but I am not sure we have anyone stage IV undergoing treatment. If we do, I hope they'll post. I personally am hopeful about Keytruda, much more so than Yervoy, for MM.
I will follow this thread too as it would be so nice to hear from others.
Best wishes, and hope the Keytruda works well for you!
Cheri
-
- November 8, 2015 at 2:26 pm
Hi Chrisholder,
You definitely aren't being ignored, there just aren't many of us here. I have been here a few years and there have only ever been maybe 3 or 4 of us posting periodically when mucosal melanoma questions come up. The same seems true for other melanoma forums too. But it's just as you say, mucosal melanoma is uncommon and it is not all that easy to find people with the same type of cancer, let alone the same subtype of mucosal melanoma (oral, anal, etc), the same stage or with similar circumstances. Mine is stage I to II vulvar, and though I have had 3 surgeries, no treatment was offered to me beyond the surgeries and close followup. I am about 2-1/2 years out and so far my scans are clear. I know we have another member with stage III, but I am not sure we have anyone stage IV undergoing treatment. If we do, I hope they'll post. I personally am hopeful about Keytruda, much more so than Yervoy, for MM.
I will follow this thread too as it would be so nice to hear from others.
Best wishes, and hope the Keytruda works well for you!
Cheri
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- November 13, 2015 at 10:02 am
Six years ago I was diagnosed with mucosal melanoma that had grown from my nasal concha into the septum in my right nostril. I had several recurrences which was taken care of by my surgeon. Two years ago PETscan showed melanoma in my left maxillary sinus. It had grown into the scullbase and into my upper palate and destroyed the roots of my teeth there. It was inoperable. Participated in a trial nivo/dacarbazine. The MR after 12 weeks showed a little (1 mm) progress and I was out from the study. I was having one dose of ipi and had hepatitis. Then steroids for some months and then had dacarbazine for one year. The tumours were stable but a tiny nodule in my lung disappeared. Then Keytruda. The scan after 12 weeks showed al little shrinkage in the tumor I have in my Ethmoid sinus but the big tumor in my left maxillary sinus was stable. I go on with keytruda and hope it will work but I have more and more pain so I doubt it. In another forum I read about a man who had mucosal melanoma in the same place and he was NED after a few doses Keytruda. Hope you will be too!
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- November 13, 2015 at 10:02 am
Six years ago I was diagnosed with mucosal melanoma that had grown from my nasal concha into the septum in my right nostril. I had several recurrences which was taken care of by my surgeon. Two years ago PETscan showed melanoma in my left maxillary sinus. It had grown into the scullbase and into my upper palate and destroyed the roots of my teeth there. It was inoperable. Participated in a trial nivo/dacarbazine. The MR after 12 weeks showed a little (1 mm) progress and I was out from the study. I was having one dose of ipi and had hepatitis. Then steroids for some months and then had dacarbazine for one year. The tumours were stable but a tiny nodule in my lung disappeared. Then Keytruda. The scan after 12 weeks showed al little shrinkage in the tumor I have in my Ethmoid sinus but the big tumor in my left maxillary sinus was stable. I go on with keytruda and hope it will work but I have more and more pain so I doubt it. In another forum I read about a man who had mucosal melanoma in the same place and he was NED after a few doses Keytruda. Hope you will be too!
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- November 13, 2015 at 10:02 am
Six years ago I was diagnosed with mucosal melanoma that had grown from my nasal concha into the septum in my right nostril. I had several recurrences which was taken care of by my surgeon. Two years ago PETscan showed melanoma in my left maxillary sinus. It had grown into the scullbase and into my upper palate and destroyed the roots of my teeth there. It was inoperable. Participated in a trial nivo/dacarbazine. The MR after 12 weeks showed a little (1 mm) progress and I was out from the study. I was having one dose of ipi and had hepatitis. Then steroids for some months and then had dacarbazine for one year. The tumours were stable but a tiny nodule in my lung disappeared. Then Keytruda. The scan after 12 weeks showed al little shrinkage in the tumor I have in my Ethmoid sinus but the big tumor in my left maxillary sinus was stable. I go on with keytruda and hope it will work but I have more and more pain so I doubt it. In another forum I read about a man who had mucosal melanoma in the same place and he was NED after a few doses Keytruda. Hope you will be too!
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- November 13, 2015 at 9:02 pm
Oh, yours is a long a difficult journey,Inger – thanks so much for sharing the story. I too got hepatitis after ipi/nivo, then heavy steroids, then a long recovery from the side effects before I could begin the Keytruda. I'm still very early in that course – first scans come in mid-Dec. I'll post again then and meanwhile fervently hope you have active shrinkage. Many have good results from Keytruda – hopefully we will too. Chris
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- November 13, 2015 at 9:02 pm
Oh, yours is a long a difficult journey,Inger – thanks so much for sharing the story. I too got hepatitis after ipi/nivo, then heavy steroids, then a long recovery from the side effects before I could begin the Keytruda. I'm still very early in that course – first scans come in mid-Dec. I'll post again then and meanwhile fervently hope you have active shrinkage. Many have good results from Keytruda – hopefully we will too. Chris
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- January 8, 2016 at 7:57 pm
Hello everyone. I wanted to let you know that we also have a group on Facebook of JUST Mucosal Melanoma patients and Caregivers.
It is a private group and only the people in the group and can see. We are small currently holding at 31 members currently.
you can find us at
https://www.facebook.com/groups/906485416088740/
I am the caregiver to my mom who has omm diagnosed 5/15.
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- January 8, 2016 at 7:57 pm
Hello everyone. I wanted to let you know that we also have a group on Facebook of JUST Mucosal Melanoma patients and Caregivers.
It is a private group and only the people in the group and can see. We are small currently holding at 31 members currently.
you can find us at
https://www.facebook.com/groups/906485416088740/
I am the caregiver to my mom who has omm diagnosed 5/15.
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- January 8, 2016 at 7:57 pm
Hello everyone. I wanted to let you know that we also have a group on Facebook of JUST Mucosal Melanoma patients and Caregivers.
It is a private group and only the people in the group and can see. We are small currently holding at 31 members currently.
you can find us at
https://www.facebook.com/groups/906485416088740/
I am the caregiver to my mom who has omm diagnosed 5/15.
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- November 13, 2015 at 9:02 pm
Oh, yours is a long a difficult journey,Inger – thanks so much for sharing the story. I too got hepatitis after ipi/nivo, then heavy steroids, then a long recovery from the side effects before I could begin the Keytruda. I'm still very early in that course – first scans come in mid-Dec. I'll post again then and meanwhile fervently hope you have active shrinkage. Many have good results from Keytruda – hopefully we will too. Chris
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Tagged: mucosal melanoma
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