Desmoplastic Melanoma

Hi Mbl19700,

I am sorry to hear about your diagnosis but you have come to a good place.

I had desmoplastic melanoma 3 years ago and like you three surgeries to get rid of it. I was fortunate that my SNLB came back negative so my diagnosis was stage 2b. I was unlucky in that my lesion was on my cheek and has left a large patch of a different colour after the skin graft. Such is life!

I also had stage 3a breast cancer 9 years ago for which chemotherapy was advised. I was terribly frightened of the side effects but in the end though it was no walk in the park, it was very doable and I was extremely well taken care of while undergoing treatment. I had lots of side-effects, though most were minor. The worst were losing my hair and neuropathy in my hands and feet. I met lots of other ladies undergoing the same treatment and we all had different side-effects. No one got all of the side-effects that we were informed about. I think it depends on your general tendancies. If you are inclined to get thrush anyway, the treatment might give you thrush for example.

Looking back, taking the chemo has given me the peace of mind of knowing that I followed the recommended care and left no stone unturned in my treatment. Even if it comes back, I know that I did all I could and will have no regrets. My experience is not the same as yours exactly but similar in some ways.

You are of course tempted to wait and see if the surgery was sufficient. However the thing about crossing future bridges is that tomorrow's bridge might be very different to today's. Right now you have a very good chance of ensuring the melanoma does not return. Without further treatment it could silently progress and leave you with a stage 4 diagnosis. In your shoes I would take the treatment and see how it goes. Just make sure you get treatment for all the side-effects. If it is totally unbearable you can stop. 

If your doctors are recommending Pembrolizumab, it is because they reckon that overall the benefits outweigh the risks for you.

I wish you good luck with whatever course of action you persue. Take care and may 2021 be a better year for you all round.

Miranda

Thanks Miranda.  

Did you find a community for desmoplastic melanoma anywhere else online?  I was told it is a rare cancer and have not found much research or resources to read up on it. 

Hi Mbl19700,

If it helps in your decision, I was diagnosed with a stage 3b melanoma and offered one-year adjuvant treatment with Pembrolizumab (details are in my profile) and can understand your anxiety over the possible side effects.

In my case, after discussion with my oncologist, I went ahead with the treatment and am now seven months in, and so far have experienced absolutely no side effect. My experience will not match everyone’s, but I do feel that I am being very closely monitored should any side effects arise.

You asked for our thoughts – for me, the benefits of the adjuvant treatment were explained to me and outweighed the risk of possible side effect. They are, after all, only ‘possible’ side effects and may never materialise. Whatever you decide, good luck with the rest of your treatment.

Kind regards,
pf

Thanks for sharing with me. Much appreciated. I should probably have explained my concern a little better. 

I was told about the side effects and I read up about them but I was also told that some side effects can remain after treatment is finished. I can live with temporary side effects such as rash, nausea, diarrhoea but the risk of long term damage bothers me and that’s why I am hesitant about the treatment. 

Glad you have not had any side effects and hope it all works out for you. 

Hi,

This is the best, most active and most helpful melanoma community I have found right here! You might like to read through these posts too though they are not very recent:

https://forum.melanoma.org/forums/topic/desmoplastic/

It is indeed a rare form of melanoma but it seems that it is treated in the same way as the other forms, surgery followed by adjuvant treatment if required.

Take care

Miranda

Hi Mbl19700,

I would suggest you ask your oncologist about the risk of long-term side effects, what types of patient are impacted and what percentage of patients are impacted. 

The drug manufacturers are legally obliged to publish all known side-effects, even those that are very rarely reported. It makes for very scary reading for sure but no one gets all of the side effects. Also the extreme side-effects must be very rare indeed for doctors to recommend this treatment.

All the best

Miranda

Hi Mbl19700

We haven't 'chatted' before but I wondered what decision you came to in the end regarding whether to have the adjuvant therapy that was offered.

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I decided to do the treatment.  I have had one infusion already only eight more to go - immunotherapy.   Side effects not too bad - all manageable thankfully.  But it is early days. 

In the end I think I just need to consciously decide to take the treatment rather than just follow advice given.  And that was the reason for my hesitancy.  I think it was a matter of retaining control over my destiny and understanding that I have options.  I found being diagnosed hard - felt like the proverbial rabbit in the headlights.  Now I am the rabbit on the side of the road deciding when and what road I will cross!!  

Thanks for reaching out - nice to hear from you.  Hope you are keeping safe and well.

Best regards

I Like your analogy Mbl19700 of being a rabbit that is capable of making decisions rather than just being caught in the glare of headlights.

I haven't had to have any further treatment, touch wood, after my WLE and SLNB. The only decision I had to make was whether to have the SLNB or not. Like you I read up and asked questions before coming to the decision to have it. I do think it's important that we make informed choices rather than just agree with everything we're told.

Wishing you all the best

x