Home Forums Melanoma Diagnosis: Stage IV Stage IV Mucosal Melanoma- Lost and Overwhelmed

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    Linda G

    Hello Catherine:

    It was suggested that I start a new topic since I seem to get lost in this board in different areas. My husband was just diagnosed on February 6, 2014 with Malignant Mucosal Melanoma of the Right Maxillary sinus with metastatic lesion on T6 spine. He had surgery to debulk the tumor because of the metastases and they removed as much as they could but no clean margins were attainable. He had his first infusion of Yervoy on March 12, SBRT radiation (one treatment) of the T6 lesion on March 12 and he just started a 4 week -5 day per week IMRT and Arc radiation of his face and sinuses this past Monday March 17. The week started out good but by Thursday his face and sinus area was swollen and there was again blood in the tissue when he blows his nose (this had stopped for a while after the surgery). Not sure if this is reaction to Yervoy, radiation or a possible sinus infection or other issue. They did given him Leviquan to treat for infection and I will be asking them to check him again on Monday for this. Everything has happened so fast. This started as what we thought was just a simple nose bleed on Thanksgiving day that stopped and happened again in December at which point we went to see family doctor. Everyone thought it was just weather related and gave him nasal spray. In January it started again only heavier at which time we saw and ENT specialist and that is when a CT revealed a large mass in the maxillary sinus. Genetic testing came back C-kit and NRAS negative. BRAF V600 was negative however what did come back was BRAF L597Q subclonal, EGFR V765T, HGF amplification, PTEN loss, CDKN2A/B loss, TP53 V216L, SPEN rearrangement, Exon 11 and KDM5A amplification. Other variants of unknown significance included ARDI2 (E65Q. T334A amplification, BCORL1 P968S, CHEK1 rearrangement, MLL@ P4170T, TSHR E303K and ZNF703, H402_D403>PTHLG GSSCSTCSAHD. Not sure what all this means??? We were told that Yervoy was the first course of treatment and then we would go from there. Possibilities include MK3475 EAP program and Trametinib, Vemurafenib, Dabrafenib. We are overwhelmed with information and not sure what is right or wrong. We were told this is a rare and aggressive cancer but no one says exactly what they mean by aggressive with regard to time nor has anyone really explained to us what we should expect as far as symptoms of progression of this disease or what we are in store for. It has been a whirlwind of information, fast decisions and an emotional rollercoaster. We are seeing physicians at Jefferson and saw physician at University of Pennsylvania for 2nd opinion who concurred with the treatment plan so far. I don’t know whether to stay with Jefferson or move his treatment to UPenn since they seem to have more experience with mucosal melanoma and also because we were fearful of the delay in treatment and since the UPenn dr concurred with the course of treatment is just seemed right to start it.. If my husbands time is short, we would like to know because we have many things and memories to make before he leaves us. Our 30th Wedding anniversary is coming up in May as well as my daughter’s 21st birthday in August, both of which he had big dreams about. My daughter also asked me if her father will dance at her wedding someday. I cant answer this but if he cant, we can have that memory now if we knew a little more about what to expect. We have a million questions and not many answers. Our time with my husband is precious and if it is going to be short we want it to be quality time. What is short?? 5 months, 10 month, 2 years, . No one seems to want to address this sensitive issue. We have a lifetime of love and plans to finish. The only social worker to contact us was with regard to our staying at the Hope Lodge during radiation treatments because of the distance and time we would have to travel. I contacted them and we are scheduled to meet this Monday with our family. I think we all need some help with this but when I contacted a local organization for counseling they stated they did not accept our insurance. We have been told that “if he was going to get this type of cancer, now is the time to get it with all the breakthroughs in medical in this area recently”. We are feeling overwhelmed and lost and it is starting to take its toll on our family.



    This sounds painfully familiar and the emotional toll is extreme. That cozy, comfortable world that we all used to live in with the idea that cancer is what other people get has been suddenly ripped away from of us. We have lost that vision of how we thought our lives would be. It sucks out loud.

    But you guys are doing GREAT with a lot of positive steps. You have already surgically eliminated the vast majority of the disease that could be seen from your husband. Now the task is to go after the rest. You have a team of melanoma experts working for you and NOW is exactly the time to start working with your team to develop a layered approach to knock this disease down and out.

    You guys have MANY more options available than we did just three short years ago, like PD1 EAPS, MEK, ADC..and some more coming along. Also you seem to have a good genetic map for your husbands tumor. That too is an emerging field where there is a rapidly expanding data network developing in the cancer community. Their goal is to match specific treatments which appear to be effective against specific tumor genetic traits using statistical analysis of the ever increasing data base. That’s one more bullet in your gun.

    My only specific recommendation right now is to avoid chemos (except for the ADC trial) and keep it immunity based as melanoma is a very “immuno-modulatory” cancer.

    To me starting IPI now was a very smart idea. There is some indication that there may very well be a synergy of some degree between the radiation and the IPI (the radiation kills cancer which gives off antigens, which attracts the greater number of Killer T cells that the IPI provides). However, IPI needs time to work and that’s difficult to do emotionally so now is a good time to lay out the path to follow and, to me, getting set up to enter the PD1 EAP as soon as you can after IPI makes a whole lot of sense and layer it from there.

    We never talked prognosis with our team as we all thought it was a bit pointless. However, I do wish Rachel and I talked more about possible end of life arrangements and, in particular, being ready to say goodbye. The end happened very quickly and we never had the chance for those heartfelt talks. I very much regret that.

    But circumstances and the state of the art in treatments are a LOT better today than just a few years ago.

    You are a great caregiver. You are freely giving up a part of your life to care for your husband. There is no greater love than that.

    You’re doing GREAT!


    Celeste Morris

    Hi Linda,

    I am not an expert on mucosal melanoma. I am a more than 10 year survivor of my melanoma diagnosis with almost 4 years post Stage IV. I am so sorry that you have been hit with so much in such a short period of time. It sounds like you are searching for answers to good questions and seem to have a good team in place. Since you think it would be beneficial, I would continue to seek counseling services for your family, perhaps with another office or team who will accept your insurance. Yervoy is known to be a bit slow in demonstrating its effectiveness. And I don’t blame you a bit for wanting to see something positive YESTERDAY!!!! I am hopeful that you will begin to see good responses from the combination of radiation and ipi. As far as how much time? If we on this board are honest….we have all asked that question more than once. I don’t have an answer, for you, myself, or anyone else. We all come with an expiration date…we just don’t know when that will be. So all this to say….hang in there. Perhaps those with more experience with mucosal melanoma will have information for you. I think you are on the right track. Your husband is lucky to have such a great supporter in you. Wishing you and yours my best,

    Celeste – chaoticallypreciselifeloveandmelanoma.blogspot.com

    Catherine Poole


    Do you live in the Philadelphia area? Please feel free to call our hotline (either way) and we can talk. This is overwhelming for you and I can be a good sounding board if you’d like. (610-942-3432 or toll free 866-463-6663. Mucosal melanoma is pretty elusive, the science isn’t there to figure out what causes it. I don’t believe from what I’ve read that the BRAF therapies will be helpful. I think going for IPI now is a good idea with hopes of getting to PD1 if need be. Try me the next two days as I will be out of town a bit after. Hang in there, take care of you too.

    Linda G

    Thank you Catherine for the reply and encouragement. I do live in the Philadelphia region and will call you on Tuesday March 25 if that works for you Catherine. I do gave some questions that I would like to run by you. Thank you

    Linda G

    Thank you Jeff for the words of encouragement. My husband and I have already discussed the chemo issue and we both agreed that this would not be an option. I am not familiar wi ADC but will research it along with the other information you provided. Today his doctor made mention of a Peg stomach feeding tube which totally caught us off guard. They said that as the radiation progresses it may become more difficult for him to maintain his weight and stay hydrated. This was the first time this was mentioned to us. Do you know anything about this and/ or did your wife experience mucositis during her treatments?


    Hi Linda – my husband does not have mucosol melanoma but did develop a large ulcerated area from radiation in his mouth/throat that necessitated the placement of a G tube. We felt the G tube was a blessing after struggling for weeks trying to keep him fed and hydrated. We were also able to use the tube for medications. It seems scary at first but we found the care/use of the tube was easy to deal with after the initial adjustment. After 8 months, my husband’s mouth has healed enough for him to eat normally again so we are hoping to have the tube removed next month. Hang in there and take care.


    Linda G

    Thank you Ann. After doing a little research and meeting a young lady today that is going through the same radiation treatments and having difficulty eating and swallowing. We are starting to see the benefits of getting this prophylactic ally. We will be talking to the doctor today tonget more information about this. This disease surely knows how to throw a curveball at any moment and doesn’t give you time to breath.


    Hello Linda!

    5 years ago I was dignosed with mucosal melanoma in my right nosecavity. It was surgecally removed and I got max dose of radiation and chemo. I had no mucosites or peg, I managed the treatments allright. After that I had recurrence in the same area and more operations several times. After 4 years the MM had spread to my left sinus and is now filling the space from the scullbase to the upperjaw. I was operated but a lot of the mass is still there. I failed in a Nivo/carbazine study, the MM progressed. Now I am going for ipi. I am so thankful for all new treatments today. I have had 5 wonderful years since my first diagnose and hope for still 5.


    The combination of radiation and Yervoy can be very effective. The swelling and bleeding you see may well be caused by the Yervoy-activated T cells surrounding and killing your husband’s tumors. So hang in there and try to remain calm.

    Most melanoma specialists now seem to be recommending using some type of combination treatment for melanoma right from the start. The current thinking seems not to be to “fight it to a standstill” by using one treatment after another, but rather to “hit it with a sledgehammer” right from the start to try to kill it outright. That’s the theory, anyway. Radiation + Yervoy is a combination treatment, so that is good. There is also renewed interest in using IL-2 immediately after Yervoy (or other checkpoint inhibitors) assuming that the Yervoy did some good in the first place. The idea here is that once the immune system has been “trained” to recognize and kill melanoma, the IL-2 can increase the number of these trained T-cells and result in long-term or even a permanent cure.

    There are now many clinical trials combining two or more treatments for melanoma. Some of these treatments are already FDA approved for other types of cancer and now researchers are trying them in combo with a melanoma-specific treatment to see if they work well together. Antibody-drug conjugates (ADCs) are also a promising new approach now in clinical trials.

    Basically, you are doing all the right things for now– surgery followed by radiation and Yervoy. You will need to give this treatment time to work. In the meanwhile, you can be thinking about your Plan B, which will probably involve some type of clinical trial. This will require a lot of research on your part and several conversations with your husband’s doctors. I strongly suggest that you get a second opinion before deciding on your Plan B. I have heard of several people with mucosal melanoma speak highly of Dr. Steven Hodi at Dana Farber in Boston. He might be a good person to go to for a consult.

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