Merkel Cell

Hi BRM 

I haven't had this type of skin cancer but I noticed that your post hadn't had any replies yet.

I've had a look in the group and found these previous posts from people who have had Merkel cell carcinoma which you could have a read through. I'm also 'tagging' Jeff51, who posted only a few months ago about being diagnosed, and Mr Merkel, who is a long time contributor to the group, and hopefully they'll pop on and tell you about their experiences.

Let us know how your surgery goes.

x

Hello,

I was tagged after your post so thought I would let you know about my experiences.

I was diagnosed mid 2920 after the lesion on my arm grew very quickly. Examined by dermatologists who didn't know what it was before being referred to plastic surgeon who finally made the diagnosis. Eventually had surgery , wound took a couple of months to heal fully 

Then a course of radiotherapy. A scan showed the cancer had spread and I was told it was unresectable.

I had a course of 4 chemotherapy sessions which kept the cancer at bay but further scans showed it was still present in a number of sites.

I started a course of immunotherapy with avelumab and have now had, I think, 8 sessions. I have been quite well and my latest scan showed no trace of the earlier lesions.

Life has been difficult with many hospital appointments ( a mix of NHS and private insyrance in the middle of the pandemic. I know the cancer wiont go away completely and eventually will come back, but I'm grateful that at the moment I have the chance to lead an (almost) normal life which didn't seem likely at the start of the year.

Treatments are getting better all the time and there and outcomes are much less pessimistic than they were even a couple of years ago. 

By the way before the Merkel diagnosis I had a VCC removed from my face with a skin flap. Brilliant result and still almost invisible. Plastic surgery can be brilliant.

Good luck and stay positive.

Hello, and thanks to Latchbrook for tagging me on this one.

The Community website was re-vamped a while ago, since when I've not been able to find my way around it and no longer receive notifications.  Anyway, rant over and here we are.  You should be able to find my story somewhere in this group and I've only recently updated it.  You will see that my diagnosis was in 2009 and I'm still here, so it's not the death sentence that it used to be!  I would add that, from my experience, surgery should be considered only as a cosmetic conclusion to other treatment(s).  I had several surgical excisions, each more extensive than the one before, and after every one the cancer returned more quickly and more aggressively.  Electro-chemotherapy finally eliminated it, but I was not even offered that (different consultant, different hospital) until the first lot had cut my arm off in a (failed) last-ditch attempt to rid me of the beast.  Immunotherapy was not available at the time, so I can't comment on that.

I'll be happy to answer any questions you may have (if I can), and I wish you good luck.

Thank you both for writing.   It is good to hear from two who have had MCC before, rare as it is, and to know there is light at the end of the tunnel, so to speak.  I'm still at an early stage in the process of treatment, so nothing to add.   But your comments have been helpful.   Take care, and God bless.

Thank you Jeff51 for writing.   It was good to hear from two who have had MCC before, rare as it is, and to know there is light at the end of the tunnel, so to speak.  I'm still at an early stage in the process of treatment, so nothing to add.   But your comments have been helpful.   Take care, and God bless.

Hello BRM  I’ve been diagnosed with Merkel cell cancer but have no external symptoms.  Most of my lymph nodes were infected which caused the return flow of blood in my upper thigh

to reduce causing swelling in my abdomen and upper leg.  I started Immunotherapy about 19 months ago visiting for treatment fortnightly. Whilst the results regarding the cancer have been excellent the side effects have not with considerable joint pain, loss of energy and nerve damage to my hands and feet.  The maximum for this treatment is two years which by then my immune system will hopefully have learnt how to detect the cancer cells without treatment.  I have been told by my Consultant that if the side effects become worse then he may  have to stop immunotherapy leaving radiotherapy or chemotherapy the other option.

Hello

I can see the these message were posted almost three years ago so wether anybody still around with this cancer as o require some information for my partner. Please reply 

Yes, I'm still around and – I hardly dare write the words – cancer-free for 10+ years. The rant in my previous post (above) still applies and I find this site very difficult now. Nevertheless, it has somehow managed to email me about your plea for information.  Of course I'll be happy to help if I can.  What do you need to know?

Hello Happy boy.  Yes still here after two years of Immunotherapy finishing over two years ago.  Talking to my Consultant he tells me that all his patients receiving this treatment are all still surviving but these are not all merkel cell patients.  I’ve just received knee injections of steroids which has, at the moment, reduced the pain brought on by my treatment.  Let me know if you need any more information.  Incidentally I have had no surgery or any external signs of this type of cancer.

Is there any chance I can talk to you about how you getting on as I have partner is same boat and just anxious or worried