Metastatic Melanoma

Posted by jrc3vette @jrc3vette, May 26 9:38am

Hello all, A week ago from this past Friday, my wife was diagnosed with Metastatic Melanoma. She has two sites on her upper right arm. The pathology report showed both to be subcutaneous and not primary. Has anyone had experience with or knowledge about PDM? I understand Primary Derma Melanoma is one of only two ways that the Melanoma could be local. The other way would be if the primary was already removed. A PET scan has been scheduled, but there is a lot of agonizing waiting. Thanks! - Jeffrey

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jrc3vette | @jrc3vette | May 26 9:45am

Since my wife has had seizures and memory issues, an MRI of her brain has also been ordered.

markymarkfl | @markymarkfl | May 26 11:22pm

Very sorry to hear about the diagnosis, but glad to hear they've ordered brain imaging as well as PET.

Try everything you can to get the best specialists available on your case.

You might find something/someone useful via these links at Mayo and MD Anderson
https://www.mdanderson.org/cancerwise/what-is-tumor-infiltrating-lymphocyte-til-therapy--6-things-to-know.h00-159460056.html
https://www.mayo.edu/research/labs/melanoma-research/overview
https://www.mayo.edu/research/faculty/dong-haidong-m-d-ph-d/bio-00027557
or these more general links on TILs (Tumor Infiltrating Lymphocytes) for melanoma:
https://en.wikipedia.org/wiki/Tumor-infiltrating_lymphocytes
https://www.nejm.org/doi/full/10.1056/NEJMoa2210233
Wishing you the best!

jrc3vette | @jrc3vette | May 27 9:59am

Thank you so much for the information about TILs! I did not know that it even existed .

markymarkfl | @markymarkfl | May 28 12:41am

In reply to @jrc3vette "Thank you so much for the information about TILs! I did not know that it even..." + (show)

You're very welcome. I only heard about it 4 days ago from a research nurse at a very prominent institution. Glad to pass along something that I hope is timely and useful! 🙂

Colleen Young, Connect Director | @colleenyoung | Jun 2 1:31pm

In reply to @jrc3vette "Since my wife has had seizures and memory issues, an MRI of her brain has also..." + (show)

@jrc3vette, have the seizures and memory issues started only recently? What more have you learned about her diagnosis with further testing?

jrc3vette | @jrc3vette | Jun 3 8:24am

She had childhood seizures. She started having seizures again close to a year ago now. 500 mg of Keppra slowed the frequency of seizures. The Neurologist increase the dosage to 750 mg. Now the seizures have stopped. As far as the Melanoma, the Surgical Oncologist she was referred to said the two sites are too far apart to spread to the second site without being in a local lymph node. He said it is at least stage 3. The PET scan next week should reveal if there are further metastases.

jrc3vette | @jrc3vette | Aug 11 12:44pm

Hello everyone,

It has been crazy busy lately. I thought I'd share the latest in the hope that the exchange of information could help all interested parties. My wife's Metastatic Melanoma has been confirmed with biopsies. Two tumors on her left arm (subcutaneous ) and two right auxiliary lymph nodes. She is scheduled for a colonoscope next week, since the PET scan also showed uptake in her lower colon. The PET scan also showed a growth in her right breast. After a biopsy, that was diagnosed as ER+ breast cancer. She also recently has a couple squamous cell and merkel cell sites removed. So, she was up to four different cancers. With the squamous and merkel cells removed, back to two cancers. Her Oncologist seems to be doing a great job. After 3 Keytruda immunotherapy sessions, the tumors on her right arm are are getting noticeably smaller. If the trend continues, the Oncologist will order a CT scan shortly after her fifth immunotherapy session. If that looks good, she will be scheduled to remove all the growths, right arm tumors, right auxiliary lymph nodes and the ER+ in her right breast.

We are definitely willing to share anything about our experiences with anyone that may be facing similar challenges. Perhaps our experience could help ease some of the stress you are undoubtedly having. A huge THANK YOU! to all that have responded. The knowledge has definitely helped reduce the anxiety and stress for us.