Anyone have experience with metastatic Primary Derma Melanoma?

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

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!

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

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! 🙂

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

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.

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.

Hi! 73 yo female with a 25 year history of remission of breast cancer. I was diagnosed with a .5 mm superficial spreading malignant melanoma on my lower leg in November, staging was pt1a. There was no discussion as to lymph node dissection since it was under .8mm. I had a very wide excision under sedation and now I have an open wound that is trying to heal.
FYI - To ease my fear of melanoma recurring, my dermatologist sent my tissue sample to a company called Castle Biosciences. They are able to evaluate your chances of recurrence using your specific tissue and not a grid. The numbers that came back were encouraging for me!

@2rmg4, is the open wound healing as expected? How are you doing?

Hello All,

Fast forward 6 months. My wife had a procedure to remove the two Metastatic Melanoma tumors from her right arm along with the breast cancer in her right breast, that wound up being double positive (ET+/PR+) in September. During the procedure, a lymph node dissection was performed. 2 out of 14 Lymph nodes tested positive. 1 for breast cancer. The other for both breast cancer and Melanoma. Given those results, an Oncotype test was performed to determine if Chemotherapy would be beneficial. Her Oncotype test score came back very low, so Chemotherapy was not ordered. Instead, she went through 4 weeks of Radiation therapy. After radiation therapy, she resumed the Keytruda Immunotherapy, now on 6 week intervals. The last week of radiation therapy, my wife started having migraine headaches. Her PCP prescribed Rizatriptan for the migraines and her Oncologist ordered a brain MRI. It was close to the time for a second PET scan, so a PET scan was also ordered. Last week we met with her Oncologist. Both the brain MRI and the PET scan results were clear. "No Evidence of Disease". Needless to say, we were both ecstatic! She will continue on the Keytruda Immunotherapy treatments for the remainder of a year. Also, given the double positive cancer in her right breast as well as in the biopsied lymph nodes, she was also put on hormone blocker Anastrozole. Overall, things are starting to look better. I again thank all that have provided positive and helpful feedback. I also hope this posting will spark some hope for those undergoing the same scary path we endured.