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Immunotherapy and porocarcinoma

PhillipM
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I see my surgeon in a hastily arranged appointment at 8:45 on Monday 17th, so any info at all would be great from anyone with any insight.

Yes, I know - porocarcinoma. No one knows anything about it, etc. My question though is fairly specific about two immunotherapy treatments. Nivolumab and pembrolizumab have produced good results in treating patients with metastatic porocarcinoma, and I believe both are licensed for melanoma and "several other cancers" (Google AI). Porocarcinoma will not of course be one of them because of its rarity.

How do I go about finding out if NICE guidleines might cover it somehow, etc? (There is no point at all in searching for porocarcinoma on any such website. With an incidence of somewhere between 1 in half a million and 1 in ten million, depending on which paper you read, and of these only 20%-30% metastasize porocarcinoma will not have been at the front of anyone's mind when they were thinking about this. So I need to try and find out how to put it there.)

Thanks for any thoughts people can offer.

Phillip

  • Hello PhilipM,

    Thanks for getting in touch and a warm welcome to the Online Community. I’m Heidi one of the Cancer Information Nurses here on the Macmillan Support Line.

    Thank you for your question about the immunotherapy treatments nivolumab and pembrolizumab, which have been used to treat patients with metastatic porocarcinoma.

    As you discussed with my colleague, NICE do not appear to have specific guidance about porocarcinoma but contacting them directly may be helpful. You can find their details here.

    You mentioned rightly that treatments with both nivolumab and pembrolizumab are approved for other cancers, but due to its rarity not for porocarcinoma. This can feel immensely frustrating, particularly when diagnosis was so challenging initially. I am sorry that your concerns were dismissed for so long.

    If your specialist team feel treatment would be beneficial you could ask about clinical trials, or how to access treatment when not available via the usual pathways. Given your background I can appreciate you may have already thought about these routes.

    My colleague mentioned the information provided by the British Association of Dermatologists. As you are aware the mainstay of treating porocarcinoma is surgery, radiotherapy and chemotherapy and unfortunately not currently immunotherapy.

    I searched for more information using a database called UpToDate, this is an American website publishing recommendations and guidelines using evidence from research. I found these articles which you might find interesting and useful in providing evidence regarding the efficacy of these types of immunotherapy.  All studies relate to metastatic disease only.

    UpToDate suggests that - chemotherapy and/or radiation therapy have been reported for the treatment of advanced stages of porocarcinoma. Case reports of excellent response to immune checkpoint inhibitor therapy have been reported in metastatic porocarcinoma.

    Diagnosis and Management of Porocarcinoma - Immunotherapies, such as of pembrolizumab, could be effective treatments for metastatic PC. However, because of the small number of cases using pembrolizumab, further studies are needed to prove the efficacy and safety of this treatment.

    https://pmc.ncbi.nlm.nih.gov/articles/PMC9659280/

    Excellent response to cemiplimab and radiotherapy in advanced metastatic porocarcinoma – This research suggesting a combination of radiotherapy and cemiplimab.

    https://www.sciencedirect.com/science/article/pii/S2352512624000675

    I hope that the appointment you had with your surgeon this morning was supportive. Please do have further discussion about treatment options if needed. You might find our information about understanding your cancer care rights and getting a second opinion helpful.

    It is difficult to find specific support groups, but you could try our rare cancers forum and there appears to be Eccrine Porocarcinoma share group and support on Facebook.

    Please don’t hesitate to get in touch again if we can support you further.

     

    Best wishes,

     

    Heidi,

     Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

    Ref/ AT/HC

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