Mucosal Melanoma, options and support

Hey friends,

My husband was diagnosed 2-3 months ago with Mucosal Melanoma. Primary site was in the throat and was investigated when his lymph nodes swelled up in the neck. 

Following surgery, and what has transpired to be very extensive neck decease (46 nodes were infected), and a suspected peritoneal metastasis, he is now waiting to start immunotherapy with Nivolumab and Ipilimumab. We were told that the response to that combination is not as good for the mucosal melanoma type, but he can't have any other treatment. 

The melanoma specialist has left the decision as to what to do to us. He has highlighted that dual immunotherapy has 60% chance of grade 3 or 4 toxicity. My husband has found the whole situation extremely stressful, and his anxiety is so bad that he was unable to sleep for weeks and has been breaking down in tears at the drop of a hat. He does not want to read anything on the subject and so I am left with the decision making and balancing staying away from google with finding enough information to make a choice. 

I did search this forum for posts on mucosal melanoma but there weren't many, naturally, due to its rarity. I would love to hear from people who have had that particular type and how dual immunotherapy has worked for them. I have also been unable to find out (without googling too much) , what does T3a N1 M1 means -this is something that was in the assessment letter. And finally, as my husband has refused contact with anyone since his diagnosis (incl friends and family), I am the only support he has. I am very happy to give it, but I am aware that it's only a matter of time before I need support myself ( even just on subjects such as what is the right thing to say or not say), so any advice on what is available out there will be much appreciated.

Thank you so much in advance - I am so grateful that this forum exists.  

  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I didn't have the same type of melanoma as your husband but I noticed that you hadn't had any replies yet. This is probably because, as you've said, it's a rare form of melanoma. However, there are plenty of people here who are on nivolumab and ipilimumab.

    It must be very hard for you having to make all the treatment decisions and be the only person that your husband will allow to support him. You might like to join the carers only group as well as this will give you the chance to talk to others who are caring for a loved one living with cancer.

    If this is something that you think might help, clicking on the link I've created will take you straight there. You can then join and post in the same way as you did here and also join in with existing conversations by clicking on 'reply'.

    As for what T3a N1 M1 means, clicking here will take you to information about staging of melanoma. Your husband's SCNS (skin cancer nurse specialist) can give him further information about how it relates to his diagnosis.

    Wishing both you and your husband all the best with his treatment

    x

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  • Hi Blueraibsrorm

    I was diagnosed with this in June 2921. I had extensive neck dissection  in July last year. Then in September behmgan 4 rounds of Ipi and Niv.  That finished in December. I gave since had scans in Jan and April and these have both come back as stable No change which us excellent. I did gave some side effects, some if which I still have and also get tired easily. My next scans are due at end if July. The only treatment I'm on at moment is calcium for my bones. It's very hard and I often get upset but try not to let my family see this too much. Please let me know how you get on

    Best wishes

    Parklands xx

  • Hi , thank you so much for your response and very useful information. I will definitely join the carers only group as i often wonder if I am doing or saying the right things. I did think that the responses on here might not be many as it is a rare form, but I thought I would give it a go. It's nice to have a place where people share experiences as my understanding is that each person has had a completely different journey. Thank you so much again for your reply x

  • Hi Parklands,

    Thank you so much for responding. It is nice to hear from someone who has had the same op as my husband. 

    Having just began the journey, it's all very scary. During the brief consultations with the specialists, all that is highlighted is how many things can go wrong when you begin immunotherapy. And obviously, with an extensive neck decease and a recommendation of Ipi and Niv together, the possible resulting toxicity is 60%. It's all very scary. So it's so nice to hear someone who has been there and got through the 4 rounds and is stable as a result. I was starting to worry as we were told that MM doesn't respond as well to Immunotherapy as the other type, but I am starting to realise that everything is individual. Having been told that chemo or radiotherapy wouldn't help, I have also seen online the success story of a lady in the US who after having immunotherapy ( but stopping due to side-effects) , went on to have chemo and radio , which helped her a lot. So I am trying to stay hopeful, though its not easy. Every day is different. 

    If you don't mind me asking, did you find that talking to people helped or not? My husband is so scared of the whole diagnosis and process, and the way it will be part of our life for a long period of time, that is struggling to process anything to do with the diagnosis. 

    Thank you again for your reply -I really appreciate it. I am hoping and praying that your scans continue to show no change. xx

  • Unfortunately it can be difficult to find others to talk to when you have a rare form of cancer but we all understand the problems, both emotional and physical, that come with a diagnosis.

    I'm sure you'll find the carers only group useful as you can chat to others whose perspective is that of someone who is trying to help someone very close to them with cancer and they might have hints and tips of how they got someone to open up to their family and friends about their cancer diagnosis.

    x

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  • Howdy, fellow lucky ol' Mucosal Melanoma patient here. I believe we are known as unicorns as its so rare.

    I am similar to your partner, I was diagnosed in December 21 at age 48. In January I had a maxilectomy and neck dissection at Preston Royal Infirmary. I had a 3 inch tumour under my chin and two other lymphs were cancerous all in addition to the primary in my mouth.

    The Operation achieved clear margins in my mouth which was a great result and the other tumours cut out from my neck. I started on Novilumab only in March wasnt offered ipilimumab though.

    The immunotherapy has been a breeze, after reading all the warnings and side effects and convincing myself I would die the minute they pumped it in me 4 cycles on and im still waiting for something to happen, only downside has been im a bit tired.

    The stress side of things is the worst, I could not read about it or didn't want any information at all, I knew it was bad and that was enough for me, but now 6 months on I actively want to seek the information, like your partner, early on I was an emotional wreck, the operation and recovery was horrendous and its only looking back now that you realise how bad it all is and what a shock it is, he needs to just take it step by step until he wants more information.

    Im currently clear, I have my 6 month scan at the end of the month so will see what that brings. I have a CT every 3 months. Best advice is take it a day at a time, speak to the specialists and don't worry to much about the Immunotherapy it all gets easier with time.

    If you are after any info just ask, I will keep checking in on here.

  • Hi Sean T,

    thank you very much for replying. It’s so encouraging to read your post and especially that your immunotherapy was a breeze. It’s hard reading through all the drug information of all the things that can go wrong and not imagining that all of them will happen to your loved one. I suppose, like my husband, your surgery took some recovering and perhaps that’s why you started immunotherapy in March. My husband was in hospital for a week and the following month for sure wasn’t in any condition to start anything. 

    I can also confirm, from the way my husband is too, that the stress side is worst. Thank you for sharing, that 6 months on, you actually seek information and want to know. That makes me hopeful that he will come to accept the diagnosis and process it enough to want to find out as much as possible. 

    I am very happy to read that you are currently clear. I hope that the 3 monthly CT scans are more of a reassurance than a chore. 

    I was wondering , since it’s such a shock the whole diagnosis and treatment, if once you are in the clear, you have looked into changing your food habits. There are lots of articles out there, including trials,  that suggest that eating a fibre-rich diet can make a difference. 

    Thank you again so much for sharing your thoughts and experiences - I am very grateful! 

  • Hi,

    Yes there was no way after the Op that I would have been fit enough to start Immuno, It took a good two months for things to get nearer the new norm. I had to have two follow up ops at 4 and 8 weeks also. The Immunotherapy started after about 10 weeks. The histology report took about 4 weeks and they cant start until they have that anyway, has your husbands report come back yet?

    The CT scans are fine in themselves its the results that are stressful, I have my 6 month scan tomorrow which I just treat as a trip out and have a spot of lunch but I stress very much about the results. From receiving the appointment the stress starts, I have found that a course of Hypnotherapy has helped a lot though in teaching me to deal with it, but no matter what, it is a stressful thing, they don't call it scanxiety for nothing.....

    Haven't changed any habits, I wasn't too bad anyway, a little overweight maybe and maybe a little to much red wine now and again but overall healthy, there are no known risk factors or causes for Mucosal Melanoma, the surgeon said there's nothing I have done or could change that would have prevented it, its just one of those things. My view is that I got unlucky but its not going to stop me enjoying the future in fact we are off for a family holiday to Menorca on Saturday, that is something a few months ago I wouldn't have thought possible, but once you are settled on the immunotherapy you start to relax and things return to some sort of normal. Even went to Portugal at the end of May, once you are settled in the treatment there are reasonably priced travel insurance policy available.

    Maybe of interest or not, and not sure where you are located in the country but there is an interesting trial going on at Glasgow hospital using a dual immuno, its Nivolumab and some new product but I believe they are seeing good results, I would have been very interested in it if I had known about it but its too late once you start on Immuno so it rules me out.

    Have you had a discussion with your oncologist about doing single treatment Immunotherapy i.e Nivolumab only, if you are uncomfortable on dual then it may be worth a chat to see if the statistics show the risk to be worth it or not, I am assuming my Oncologist decided not, but the decision will be influenced heavily by the success of surgery and the histology report. The problem with Mucosal Melanoma is, its that rare that there aren't any reliable statistics, and one good result or bad result can make a big change to the success or otherwise in percentages, we also tend to just get treated as per a cutaneous melanoma case, however as you will be aware they are very different beasts unfortunately.

    I wish your husband well whichever choice you both make, please make sure you also get the support you need, my wife is doing an amazing job but I am very aware of how its hurting her, one thing I have found out by stepping into the world of cancer is there are just so many amazing people and organisations that can support you in so many ways, make sure you take the help you need and don't worry about your husband burying his head in the sand, its just such a tough mental time for him and the blows come hard initially but things will settle down a little now and you can hopefully pause for breath soon.

    Please keep in touch and let me know how you get on...