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jyc

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      jyc
      Participant
        Amazing Anne-Louise!!! Bravo!!! Thank you for your moving performance!

        I played viola and throughout my middle school and high school career and the sound from your instrument just warms my soul.

        Hope you stay healthy and safe too!

        jyc
        Participant
          Hi Maggie,

          My father was diagnosed with MM of the Right Sinus in 2007 after he had a nose bleed for a couple of months. We were all stunned of course. He was treated at MD Anderson Cancer Center here in Houston had pretty radical endoscopic surgery of his sinus where they removed his septum and took out the lymph nodes from the right side of his neck. Surgery recovery went smoothly and the following weeks he received radiation treatment to the sinus and right neck. At the time he was diagnosed as Stage 3 b/c they did find a few cells in his lymph nodes. Luckily no distant spread. He also received a chemo therapy combo to try and clean up any errant cancer cells.

          I would credit the radical surgery, regular monitoring and expert treatments at a major cancer treatment center for my dad’s 10+ years of survival since his diagnosis AND! there are more and more options available now than ever before.

          Jyc

          jyc
          Participant

            I also say don't wait but go to the ER or a doctor and get checked out.  These side effects can set in and escalate much faster in a patient on treatment.  

            jyc
            Participant

              Hi JW, in case you're looking for another very informative forum, there is a Facebook group dedicated to support for patients and caregivers experiencing mucosal melanoma which includes anorectal melanoma.  Just search for "Mucosal Melanoma Warriors"

              jyc
              Participant

                Hi jc2dad.

                I live in Houston so here are a few tips I can offer for your visit to MDA in Houston.

                First off, if you're flying, Houston has 2 airports and the Houston Hobby Airport is much closer to the Med Center (20-30min) in relation to Bush Intercontinental Airport (IAH) (45min+).  If you're driving in, MDA has valet parking and if you're going to be at MDA for at least 4 hrs, it's a good idea to go ahead and valet to save yourself the walk to the parking garages.

                There are quite a few hotels in the Houston Medical Center area which offer shuttles to and from the MDAnderson Campus.  There is also a hotel connected to MDA called the Rotary House.  Once you're on campus, most of the facillities and clinics are housed in that main building or in satillite buildings which are accessible via shuttles provided by MDA.  There are also a lot of friendly and helpful staff and volunteers who are happy to guide you through the extensive campus.

                MDA is also close to a good amount of dining and entertainment in the area.  It's within 15min of Downtown Houston, Rice Village (5-10min) is a good place to find good food and drink and shopping.  MDA is also adjacent to Houston's Museum district which is home to an excellt Fine Arts museum (mfah.org) and Science museum (hmns.org).

                Fyi, during the month of August, we have a month long event called "Houston Restaurant Weeks" where a lot of our exceptional restaurants participate fundraising for our city's food pantry.  So basically, the restaurants offer a set menu for lunch or dinner or both (usually 2 or 3 courses) for $25 – $35 and a portion of the proceeds will go to the food pantry.  It's a great opportunity to get some really good food for a reasonable price.  Check out the details here:  http://www.houstonrestaurantweeks.com

                jyc
                Participant

                  Hello there,

                  I'd like to share this to hopefully help you.

                  My father also has mucosal melanoma and has been on this journey for 10yrs and is lucky to be treated at MD Anderson in our hometown Houston.  He started out Stage 3 and went through radical endoscopic resection surgery which took out his septum and most of his central sinus strcutures (you couldn't tell he's had so much surgery because there are very few surface scars).  The area behind my dad's nose is basically all empty.  My dad's surgeon specializes in sino-endoscopic and brain base surgery and sorta joked that you don't need all of that stuff.  Over the years of monitoring he also has had to have sinonasal endoscopic surgery a few times to remove local recurrances.  He too has had radiation to his face and neck.  My dad was also lucky to have the cKit mutation and went through 6months of chemo with a drug combo to hopefully prevent recurrance (it was a good amount of time before his 1st local recurrance after this course of treatment).  The issue with this aggressive treatment approach is that we aren't sure what kind of difference the combo made towards his NED status or was the surgery or radiation more key?  Thing about surgery is once it's done, you're NED again.  But in any case, we are grateful for all the time he was NED.

                  I think that being at a major cancer center certainly made a huge difference in the outcomes for my dad.  With such a rare cancer, you need providers that have had at least some exposure and experience with it and where else would you see more than at a major cancer center?  The providers aren't just treating patients but are leaders in the field and also instructing and passing along their knowledge to the next generation of providers.

                  I don't want to bring you down but last year my dad did enter to Stage 4 when they found lesions in his lungs, pancreas, abdomen and brain.  This was such a shock after all the years of clear body scans and he didn't show any symptoms from what we could tell.  My dad went through 12 weeks of Ipi infusions(1 every 3 weeks) and so far the results have been very, very encouraging.  He has scans in another 3 weeks to make sure that the effects are still working but he's tolerated the side effects and got through all 4 infusions.  He's developed vitiligo and a mean skin allergy to certain seafoods but it's manageable.  He's retired, gardens and cooks and is the original foodie.

                  I know it's hard not to look at the stats and statistically the Ipi responses are slim, but statistically what were the odds you'd land in the mucosal melanoma column? (like Luke Skywalker shooting a missle at the Death Star's core)  But if you've been around as long as some old timers, you'll also see that Ipi hasn't been around that long enough to gather a lot of 5+ yr stats for mucosal (it was excluded from lots of trials).  I also like to think my dad isn't just a statistic.  ðŸ™‚  I would also like to point out that there have been more effective treatment breakthroughs in the last 5-10yrs than there has been i the last 30yrs and it could only get better.

                  Lastly, you are not alone.  I visit the forum everyday and know there are more than a few people here that have mucosal too.  I generally join the conversation about mucosal to share my experience with my father for some more perspective of an old timer.

                  J

                   

                   

                   

                  jyc
                  Participant

                    Hi Rachelle,

                    The news that so far there is no disease detected in other parts of his body is great! 

                    My dad also has mucosal melanoma originating from the sinus and was diagnosed back in 2007.  He's been through multiple surgeries, nice years of good scans and a few recurrances along the way.  He did progress from Stage 3 to 4 recently but so far he's tolerating treatment well and still enjoying retired life.  ðŸ™‚  I found this forum on day one of my dad's diagnosis and have been coming back everyday since.  This is truly one of the richest sources of knowledge, experience and support for the melanoma survivor community (you became a survivor when you receive the diagnosis).  

                    Is your father being treated at a major cancer center?  I think one of the biggest factors that played into my father's treatment is that he's being treated at a major cancer treatment center, MDAnderson (we live in Houston, TX).  Mucosal melanoma is exceedingly rare (1% of all melanoma) and the oncologists that have experience treating it are just as rare too.  Some hopsitals have relationships with centers like MDAnderson and will work with your oncologist on treatment plans.  Larger centers also have specialists in other disciplines like head and neck surgery, oncology and radiology which could be involved in his treatment plan.  If he's not being seen at a major cancer center, it would be beneficial to look into getting referred into one.  I know MDAnderson has a self-referral page on their website.

                    jyc
                    Participant

                      Hi Echo,

                      I hope this story will help you.

                      My father has nasal mucosal melanoma originally diagnosed in 2007.  He progressed to Stage IV last year with metastasis to lungs, pancreas and abdomen.  No symptoms, but found on routine scans. He tried single agent Opdivo (aka Nivolumab) and finished all infusions and had minimal side effects but the scans showed progression in the tumors that were already there and he had some new spots on the liver, adrenal glands and brain. Sigh…

                      Next plan, he then switched to Yervoy (aka Ipi) and Temodar and after just 1 infusion of Ipi his LDH levels were halved (it peaked at 1300+).  Our jaws dropped with delight!!  All blood test and side effects were minimal again luckily and he was able to finish all 4 infusions (finishing at the end of Feb).  His scans post treatment showed significant reduction and in some cases resolution of his tumors so we feel really fortunate to get these results. The doctors are monitoring his blood at this point to check his levels and he's continuing to take Temodar only for his brain mets.  We'll scan again in the coming weeks to see if the Ipi is still working and if we need to re-introduce it.

                      Needless to say we are very, very grateful for his results and he’s enjoying his new found energy and appetite.

                      Jyc

                        jyc
                        Participant

                          Echo,

                          My post about Opdivo is not meant to discourage you or imply that it doesn't work for mucosal melanoma.  My point is that you never know what treatment will work because it really depends on the individual. Even though it didn't work for my father, Opdivo has worked for lots and lots of people.

                          I forgot to mention, but back in 2007, my father was tested for cKIT and he did have the mutation.  He took Nexavar (similar to Gleevec) and Temodar for 6 months as a adjunctive treatment and we aren't sure to what extent the benefit was because he was Stage 3 for 6yrs before he had his 1st local recurrance.

                          My father was also diagnosed with colon cancer and went through surgery and chemo treatment 3 yrs ago so his journey has been a bit bumpy but we're still rolling along.

                          Stay rolling!

                          Jyc

                        jyc
                        Participant

                          Hi Dina, my father has been diagnosed with mucosal melanoma in the sinus since 2007.  It started out as an stuffy nose and then a nose bleed as well – total surprise.  I think the best move we made was to get treated at a major institute if you can.  We're fortunate to live in Houston, TX and have good insurance and are being seen at MD Anderson.  

                          PET and CT and MRI are pretty standard tests to have.  My dad was treated with sinus surgery to get clear margins, some radiation to the sinus and neck (he did have 1 micromet in a lymphnode shortly after his first surgery) and some targeted treatment since he had the cKit mutation.  The cKit test is something you may want to ask your doctor about.  My dad usually has a CT or PET to check the body and MRI to check for local changes in the sinus.  After initial treatment, he had scans every 3 months for 2 yrs to monitor, and then it tapered off to every 6 months.

                          I found this forum on day one since my dad was diagnosed and visit everyday when I can.  You'll get into all the jargon in no time.  This forum has been an indispensible source of encouragement and information. I'm normally more of a silent reader, but your post made me want to respond.  Try to avoid doing too many web searches and read into old articles.  The world of treatment has come a long way.

                          – Jackie

                           

                          jyc
                          Participant

                            Hearing your story, I wanted to share mine.

                            My dad has melanoma and was stage 3 since 2007.  He's also had stage 3 colon cancer.  He was NED up till 3 weeks ago when his routine CT scan found a mass in his abdomen and the biopsy confirmed it was melanoma.  You wouldn't know something was going on from his looks.  Fast forward to this past Tuesday, they started him on immunotherapy and he got his first outpatient infusion.  He's been treated at MD Anderson this whole time and I feel they wasted no time since the scan and the start of treatment.

                            I've been trolling this forum everyday since 2007 when my dad was first diagnosed and have learned so, so, so much from the community and followed so many people's journeys here.  People are very open to sharing and are generous with their knowledge.  The evolution of treatment for this disease has progressed more in the last 5 years than it has in the previous 30.  Outcomes and standards of living for treatments are improving and the new frontier of immunotherapy is being revealed not just for melanoma.  Imho, it's an encouraging time in cancer treatment.

                            A few more tips I've seen here on handling this new normal:

                            1.  Make sure you get treated by a melanoma specialist.

                            2.  Make sure you get treated by a melanoma specialist.

                            3.  Make sure you get treated by a melanoma specialist.

                            4.  Be wary of Google searches.  The internet is full of old information and statistics.

                             

                            jyc
                            Participant

                              Hearing your story, I wanted to share mine.

                              My dad has melanoma and was stage 3 since 2007.  He's also had stage 3 colon cancer.  He was NED up till 3 weeks ago when his routine CT scan found a mass in his abdomen and the biopsy confirmed it was melanoma.  You wouldn't know something was going on from his looks.  Fast forward to this past Tuesday, they started him on immunotherapy and he got his first outpatient infusion.  He's been treated at MD Anderson this whole time and I feel they wasted no time since the scan and the start of treatment.

                              I've been trolling this forum everyday since 2007 when my dad was first diagnosed and have learned so, so, so much from the community and followed so many people's journeys here.  People are very open to sharing and are generous with their knowledge.  The evolution of treatment for this disease has progressed more in the last 5 years than it has in the previous 30.  Outcomes and standards of living for treatments are improving and the new frontier of immunotherapy is being revealed not just for melanoma.  Imho, it's an encouraging time in cancer treatment.

                              A few more tips I've seen here on handling this new normal:

                              1.  Make sure you get treated by a melanoma specialist.

                              2.  Make sure you get treated by a melanoma specialist.

                              3.  Make sure you get treated by a melanoma specialist.

                              4.  Be wary of Google searches.  The internet is full of old information and statistics.

                               

                              jyc
                              Participant

                                Hearing your story, I wanted to share mine.

                                My dad has melanoma and was stage 3 since 2007.  He's also had stage 3 colon cancer.  He was NED up till 3 weeks ago when his routine CT scan found a mass in his abdomen and the biopsy confirmed it was melanoma.  You wouldn't know something was going on from his looks.  Fast forward to this past Tuesday, they started him on immunotherapy and he got his first outpatient infusion.  He's been treated at MD Anderson this whole time and I feel they wasted no time since the scan and the start of treatment.

                                I've been trolling this forum everyday since 2007 when my dad was first diagnosed and have learned so, so, so much from the community and followed so many people's journeys here.  People are very open to sharing and are generous with their knowledge.  The evolution of treatment for this disease has progressed more in the last 5 years than it has in the previous 30.  Outcomes and standards of living for treatments are improving and the new frontier of immunotherapy is being revealed not just for melanoma.  Imho, it's an encouraging time in cancer treatment.

                                A few more tips I've seen here on handling this new normal:

                                1.  Make sure you get treated by a melanoma specialist.

                                2.  Make sure you get treated by a melanoma specialist.

                                3.  Make sure you get treated by a melanoma specialist.

                                4.  Be wary of Google searches.  The internet is full of old information and statistics.

                                 

                                jyc
                                Participant
                                  Maggie,

                                  I’m sure you may already know, but mucosal melanoma is a very, very rare form of melanoma (1% of melanomas) so there aren’t many doctors that can even say they’ve ever treated these patients. And it’s behavior is different from cutaneous melanoma. So it’s of the utmost importance you get treatment from providers who have the most experience and access to the best science and medicine. It was a rocky journey of scans, waiting, appointments, more surgery and even recurrences and a 2nd cancer. I honestly could say I visited this forum everyday for support and education. Also, there’s a Facebook support group you can join, just look for “Mucosal Melanoma Warriors”.

                                  Jyc

                                  jyc
                                  Participant

                                    From what I remember, I don't think we really knew a lot about the impact of his diagnosis at the time we found out.  We knew it was cancer, and we knew that melanoma was a form of skin cancer that that was about it.  My dad's ENT spent some time as a fellow at MDA and immediately referred us into MDA as soon as he got the results of the biopsy (he found the lesion in the sinus) and a week later we were at the consultation with the head and neck surgeon at MDA.  Things moved very, very quick luckily so we are grateful that he got treatment sooner. Another thing we are grateful for is the fact that my dad had really good medical insurance and his company had a nice STD and FMLA policy.  The company also provides good insurance as a retirement benefit for which we are immensely grateful for.

                                    I'm also gratefult for finding this forum.  It really has helped us get more perspective, knowledge and discover that we are not alone on this journey.

                                    I'm also grateful about all the new treatments that have emerged within the last 5 yrs, there have been more breakthroughs in treatment than in the last 20yrs and there are more in the pipeline.

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