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Are there long term survivors of mucosal melanoma?

Forums Cutaneous Melanoma Community Are there long term survivors of mucosal melanoma?

  • Post
    CHD
    Participant

      I can't find the post, but I could have sworn I read earlier someone said a specialist/doc told them there are no long-term survivors of mucosal melanoma?  Does anyone have more information on this?  Been told the same thing?  Studies?  Been told the opposite?  Known someone who is a long-term survivor?

      Not sure how long-term survivor is defined.  I am 3 years out from my diagnosis of vulvar melanoma with radical vulvectomy.  Stage I-II with regression but no lymph node involvement.  Later diagnosis of vulvar MIS, three surgeries total, but last PET scan in August clear.

      I had not heard that there are no survivors long-term.  Does anyone have more info on this? Long-term meaning how long?  I know this is going to nag at me until I figure it out!  Have tried researching it for myself but no luck.  Am not scheduled to see my specialist until August, so long time to wait for answers. πŸ™‚

      Thanks in advance.  I will happily accept personal stories. πŸ™‚  Ugh, this disease just keeps me in limbo sometimes.  If this is what the specialists are saying, I want to know that, too.  But definitely curious how "long-term" is being defined here.  My understanding was that mucosal melanoma survival was similar to cutaneous in that depth, ulceration, mitosis rate, etc., all had an impact.  But I don't recall ever discussing exactly what "long-term" survival for us actually meant!

      I realize not a lot of us here on the forum, but any insight appreciated.

      Cheri

    Viewing 13 reply threads
    • Replies
        Becky
        Participant

          I agree the statistics are pretty scary

          my son ( oral melanoma, lymph node involvement, one year of interferon) with be NED for 6 years in July.

           

          Becky
          Participant

            I agree the statistics are pretty scary

            my son ( oral melanoma, lymph node involvement, one year of interferon) with be NED for 6 years in July.

             

              Becky
              Participant

                Actually, it will be 7 years in July. He was 20 when he was diagnosed…27 now. 

                Thankful every day πŸ™‚

                Becky
                Participant

                  Actually, it will be 7 years in July. He was 20 when he was diagnosed…27 now. 

                  Thankful every day πŸ™‚

                  Becky
                  Participant

                    Actually, it will be 7 years in July. He was 20 when he was diagnosed…27 now. 

                    Thankful every day πŸ™‚

                  Becky
                  Participant

                    I agree the statistics are pretty scary

                    my son ( oral melanoma, lymph node involvement, one year of interferon) with be NED for 6 years in July.

                     

                    CHD
                    Participant

                      Becky and Teodora,

                      Thank you so much for sharing your stories with me.  Both of you at 6-7 years out and that is great, Becky with your son and Teodora.   Sometimes this disease just rises up and scares the crap out of me. Thank you (and thank you Mary, who PM'd me) for the support and the insight.  As Mary, also a member of this forum, reminded me, I do need to remember that this is a rapidly progressing field, with rapidly progressing insight into the disease and treatments.  And I am inspired that you both are describing being 6-7 years out and still going strong.  May we all be going strong at 20.

                      Becky, my oldest son had an atypical nevus on his abdomen not long after my diagnosis that had to be removed.  He'd had that mole since he was a baby, and it started to morph into something scary when he reached puberty.  He now has regular skin checks, as does my younger son.  It worries me that my oldest son's pre-melanoma was in a non-sun involved area, just like my own.  At least it wasn't mucosal, but even so.  It was clearly not sun related.  I tell him the good news is that if there is anything the slightest bit odd anywhere on his body, it will be caught early and removed. 

                      I can't let myself think there are no long-term survivors of mucosal melanoma.  I don't even worry about me, I worry about my kids.  That is not even to sound unselfish, it is just a fact.  Once they are grown and married with kids, maybe my focus will turn to me?  I don't know, but right now it is them.

                      Teodora, I am so glad you are out there living life fully!  I told my husband about this, and I am working on guilting him into a nice, bucket-list type vacation. : )

                      Again, thank you both SO MUCH for reaching out.

                      Cheri

                      CHD
                      Participant

                        Becky and Teodora,

                        Thank you so much for sharing your stories with me.  Both of you at 6-7 years out and that is great, Becky with your son and Teodora.   Sometimes this disease just rises up and scares the crap out of me. Thank you (and thank you Mary, who PM'd me) for the support and the insight.  As Mary, also a member of this forum, reminded me, I do need to remember that this is a rapidly progressing field, with rapidly progressing insight into the disease and treatments.  And I am inspired that you both are describing being 6-7 years out and still going strong.  May we all be going strong at 20.

                        Becky, my oldest son had an atypical nevus on his abdomen not long after my diagnosis that had to be removed.  He'd had that mole since he was a baby, and it started to morph into something scary when he reached puberty.  He now has regular skin checks, as does my younger son.  It worries me that my oldest son's pre-melanoma was in a non-sun involved area, just like my own.  At least it wasn't mucosal, but even so.  It was clearly not sun related.  I tell him the good news is that if there is anything the slightest bit odd anywhere on his body, it will be caught early and removed. 

                        I can't let myself think there are no long-term survivors of mucosal melanoma.  I don't even worry about me, I worry about my kids.  That is not even to sound unselfish, it is just a fact.  Once they are grown and married with kids, maybe my focus will turn to me?  I don't know, but right now it is them.

                        Teodora, I am so glad you are out there living life fully!  I told my husband about this, and I am working on guilting him into a nice, bucket-list type vacation. : )

                        Again, thank you both SO MUCH for reaching out.

                        Cheri

                        CHD
                        Participant

                          Becky and Teodora,

                          Thank you so much for sharing your stories with me.  Both of you at 6-7 years out and that is great, Becky with your son and Teodora.   Sometimes this disease just rises up and scares the crap out of me. Thank you (and thank you Mary, who PM'd me) for the support and the insight.  As Mary, also a member of this forum, reminded me, I do need to remember that this is a rapidly progressing field, with rapidly progressing insight into the disease and treatments.  And I am inspired that you both are describing being 6-7 years out and still going strong.  May we all be going strong at 20.

                          Becky, my oldest son had an atypical nevus on his abdomen not long after my diagnosis that had to be removed.  He'd had that mole since he was a baby, and it started to morph into something scary when he reached puberty.  He now has regular skin checks, as does my younger son.  It worries me that my oldest son's pre-melanoma was in a non-sun involved area, just like my own.  At least it wasn't mucosal, but even so.  It was clearly not sun related.  I tell him the good news is that if there is anything the slightest bit odd anywhere on his body, it will be caught early and removed. 

                          I can't let myself think there are no long-term survivors of mucosal melanoma.  I don't even worry about me, I worry about my kids.  That is not even to sound unselfish, it is just a fact.  Once they are grown and married with kids, maybe my focus will turn to me?  I don't know, but right now it is them.

                          Teodora, I am so glad you are out there living life fully!  I told my husband about this, and I am working on guilting him into a nice, bucket-list type vacation. : )

                          Again, thank you both SO MUCH for reaching out.

                          Cheri

                          Mary-E
                          Participant

                            I'm 7 years out as well. Stage 3 vulvar melanoma with no therapy beyond surgery ( partial vulvectomy and bilateral lymph node removal). I was told the 5 year survival statistics for mucosal melanoma were very grim back in 2009, but so much has changed in the treatmement options available since then.

                            Mary-E

                              Lisa Haywood
                              Participant

                                Good to hear! I have the same diagnosis and am recovering from the bilateral lymph node dissection. Not sure what’s next, but it’s good to know it’s not necessarily a death sentence. 

                              Mary-E
                              Participant

                                I'm 7 years out as well. Stage 3 vulvar melanoma with no therapy beyond surgery ( partial vulvectomy and bilateral lymph node removal). I was told the 5 year survival statistics for mucosal melanoma were very grim back in 2009, but so much has changed in the treatmement options available since then.

                                Mary-E

                                Mary-E
                                Participant

                                  I'm 7 years out as well. Stage 3 vulvar melanoma with no therapy beyond surgery ( partial vulvectomy and bilateral lymph node removal). I was told the 5 year survival statistics for mucosal melanoma were very grim back in 2009, but so much has changed in the treatmement options available since then.

                                  Mary-E

                                  JohnA
                                  Participant

                                    If you're inteested in the data, the commonly cited statistic is 20% of MM sufferers survive 5 yrs or more.  However, we've been told by 5 different experts that those are old data and the percentage is higher now, and especially with the immmunotherapy drugs available for those who have metastasis, the numbers have surely gone up, to possibly as high as 40-50%.

                                    3 years out, you're doing great!  stay positive!

                                      CHD
                                      Participant

                                        Thank you Mary E, and wow, 7 years out!

                                        John A, I really appreciate the up to date statistics.  It's funny, I have always sworn I would never allow myself to be defined by statistics, but still I always have them in the back of my mind.  I am celebrating 3 years out next month on the 6th.

                                        Thank you so much for the hopeful insights.

                                        Cheri

                                        CHD
                                        Participant

                                          Thank you Mary E, and wow, 7 years out!

                                          John A, I really appreciate the up to date statistics.  It's funny, I have always sworn I would never allow myself to be defined by statistics, but still I always have them in the back of my mind.  I am celebrating 3 years out next month on the 6th.

                                          Thank you so much for the hopeful insights.

                                          Cheri

                                          CHD
                                          Participant

                                            Thank you Mary E, and wow, 7 years out!

                                            John A, I really appreciate the up to date statistics.  It's funny, I have always sworn I would never allow myself to be defined by statistics, but still I always have them in the back of my mind.  I am celebrating 3 years out next month on the 6th.

                                            Thank you so much for the hopeful insights.

                                            Cheri

                                            CHD
                                            Participant

                                              Today is the 3 year annniversary since my first surgery, May 6, 2013.  That was a right-sided radical vulvectomy with bilateral lymph node biopsies.  I had no idea I would end up with three 3-inch long incisions, recovering for 6 weeks.  But the lymph nodes were clear, and other than the finding of MIS on the left side the following October and biopsies and additional vulvectomy for the MIS in May 2014, my subsequent 2 PET scans have been clear.  I have chronic pain in the right side pelvic/hip bone region but nothing showed up in that region on my PET scan in August 2015, so as long as the scary stuff (melanoma metastasis) has been ruled out, I am fine with dealing with a bit of chronic pain.  I look forward to the day when I will wake up without it.

                                              Today I am celebrating.  Three years out!

                                              My kids, ages 14 and 13, want to do something special for me on Mother's Day Sunday to honor this day.  That means the world to me.  How many nights have I lay awake, wondering if I would still be here in 3 years, 5 years, 10 years.  I still have moments where I lay awake.

                                              But here I am at 3 years and still going strong. : )  The progress being made in the realm of melanoma research gives me so much hope.

                                              Here's hoping the same for other vulvovaginal melanoma patients, minus the pain.  And to all the amazing warriors on this forum.  May we all be celebrating subseqent anniversaries for many years to come.

                                              Cheri

                                              CHD
                                              Participant

                                                Today is the 3 year annniversary since my first surgery, May 6, 2013.  That was a right-sided radical vulvectomy with bilateral lymph node biopsies.  I had no idea I would end up with three 3-inch long incisions, recovering for 6 weeks.  But the lymph nodes were clear, and other than the finding of MIS on the left side the following October and biopsies and additional vulvectomy for the MIS in May 2014, my subsequent 2 PET scans have been clear.  I have chronic pain in the right side pelvic/hip bone region but nothing showed up in that region on my PET scan in August 2015, so as long as the scary stuff (melanoma metastasis) has been ruled out, I am fine with dealing with a bit of chronic pain.  I look forward to the day when I will wake up without it.

                                                Today I am celebrating.  Three years out!

                                                My kids, ages 14 and 13, want to do something special for me on Mother's Day Sunday to honor this day.  That means the world to me.  How many nights have I lay awake, wondering if I would still be here in 3 years, 5 years, 10 years.  I still have moments where I lay awake.

                                                But here I am at 3 years and still going strong. : )  The progress being made in the realm of melanoma research gives me so much hope.

                                                Here's hoping the same for other vulvovaginal melanoma patients, minus the pain.  And to all the amazing warriors on this forum.  May we all be celebrating subseqent anniversaries for many years to come.

                                                Cheri

                                                CHD
                                                Participant

                                                  Today is the 3 year annniversary since my first surgery, May 6, 2013.  That was a right-sided radical vulvectomy with bilateral lymph node biopsies.  I had no idea I would end up with three 3-inch long incisions, recovering for 6 weeks.  But the lymph nodes were clear, and other than the finding of MIS on the left side the following October and biopsies and additional vulvectomy for the MIS in May 2014, my subsequent 2 PET scans have been clear.  I have chronic pain in the right side pelvic/hip bone region but nothing showed up in that region on my PET scan in August 2015, so as long as the scary stuff (melanoma metastasis) has been ruled out, I am fine with dealing with a bit of chronic pain.  I look forward to the day when I will wake up without it.

                                                  Today I am celebrating.  Three years out!

                                                  My kids, ages 14 and 13, want to do something special for me on Mother's Day Sunday to honor this day.  That means the world to me.  How many nights have I lay awake, wondering if I would still be here in 3 years, 5 years, 10 years.  I still have moments where I lay awake.

                                                  But here I am at 3 years and still going strong. : )  The progress being made in the realm of melanoma research gives me so much hope.

                                                  Here's hoping the same for other vulvovaginal melanoma patients, minus the pain.  And to all the amazing warriors on this forum.  May we all be celebrating subseqent anniversaries for many years to come.

                                                  Cheri

                                                JohnA
                                                Participant

                                                  If you're inteested in the data, the commonly cited statistic is 20% of MM sufferers survive 5 yrs or more.  However, we've been told by 5 different experts that those are old data and the percentage is higher now, and especially with the immmunotherapy drugs available for those who have metastasis, the numbers have surely gone up, to possibly as high as 40-50%.

                                                  3 years out, you're doing great!  stay positive!

                                                  JohnA
                                                  Participant

                                                    If you're inteested in the data, the commonly cited statistic is 20% of MM sufferers survive 5 yrs or more.  However, we've been told by 5 different experts that those are old data and the percentage is higher now, and especially with the immmunotherapy drugs available for those who have metastasis, the numbers have surely gone up, to possibly as high as 40-50%.

                                                    3 years out, you're doing great!  stay positive!

                                                    Frillie
                                                    Participant

                                                      Hi Cheri, I saw somewhere that a lady posted she had been fighting it for 22 years and 18 surgeries. Wish I cold find that post again…it gave me hope. It may have been on another site like Cancer Compass or another one.  If I find it, I will let you know.

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