Vulvar melanoma: What treatments did you have?

I can only comment on my experience so far. Vulvar melanoma, 3 surgeries for removal and last path still shows in situ cells. The depth was 14mm so immunotherapy and radiation was recommended. PET AND SLN negative.
I started immunotherapy last week and start radiation in 3 weeks. Monitoring by PET scans and exams every 3 months.
This is at UCSF skin cancer and Melanoma Center. So far I’m feeling comfortable with the treatment plan.
Good luck going forward in your journey.

Thank you, Hope all goes well with your treatment. My treatment starts soon I hope.

Best to you!

I have been fighting Vulvar Melanoma for 19 years. It has always been in situ. I have had 10 surgeries. My last surgery was about 3 weeks ago. Most was in situ but there was an area that was invasive. I did have clean borders after the surgery, but my Dr. wants to go back and get wider margins and also remove my lymph nodes. This starred when I was 44 years old. Please, all thoughts are appreciated. Thank you

I have had a partial vulvectomy 8 weeks ago and have started radiation. I have only had 5 treatments so far and I am already having effects from the radiation. Red skin, little blisters, and swelling. I use an ointment after every treatment and before bed.
Do you have any suggestions on what to use or what to do to help with these effects? I only have a total of 20 treatments but starting off with effects already is a little concerning for me. Tech says it will get way worse. She said because it was a melanoma that they have to use a higher dose of radiation.
Any suggestions are appreciated!!

I have not had any response to my question so I am following up on my own question of a few things that I have found to help a bit. Maybe some day this will help someone else if they have the same questions.

I am entering into my 2nd week of radiation treatments. I have found that warm Epsom salt baths help to sooth me and my down unders! I like the Lavender salt. I could not take baths after my surgery for 8 weeks per my Dr. But now that I can take them, I have found it to help sooth me.
Another thing that I have found helpful is Ice Packs between the legs. I wear a thin layer of clothing or use a cloth to keep the pack away from direct contact with my skin.
One more thing that has been great and this may sound a little funny... my husband went to the hardware store and found a Bidet Attachment that could easily be installed onto my toilet. By the end of last week I was so swollen that nothing seemed to help. I sat on the toilet backwards (facing the tank), turned it on very low just enough the hit where I needed it to hit and once the shock of the cold water hitting me went away it felt wonderful! I dont know how long I sat there just letting it run. I think it helped with the swelling for sure.

As I go into week 2 I am not sure what to expect but I will continue using these few tools that I have to help relieve some of my discomfort.

If I find anything additional I will sure post again.

Hope this helps someone, somewhere, sometime!

HUGS to all!

@besissy I am so sorry that I somehow missed your original post. I have not been diagnosed with vulvar melanoma so I cannot offer you any helpful suggestions for radiation treatment. I going to tag @canadaigua @kanderstag and @caga These members all posted in our support group about their experiences with vulvar melanoma and they may have suggestions.

Here is another discussion group on this topic:

— Vulvar Melanoma Treatments
https://connect.mayoclinic.org/discussion/vulvar-melanoma-treatments/
Twenty treatments means 4 weeks of radiation and you are now in week 2? The things you have tried including sitting backwards on a bidet sound soothing. How creative of your husband to bring the bidet home for you to use!!

When will you meet with the radiation oncologist or the nurse? I had pelvic radiation for endometrial cancer and met weekly with my radiation oncology team who were very helpful in guiding me through the process.

Just wanted to wish you well as you continue your radiation treatments. I also had some bad burns from my radiation treatments and saw my radiation oncologist and the nurses each week. The nurses were great in giving me creams to help and they included Aquaphor, Calendula, and medical grade honey. We all agreed the honey helped a lot. I also had severed burning on urination and the team taught me to use a squirt bottle of warm water while urinating to help dilute and lessen the burning .
I hope this helps The good news is about 2-3 weeks after the last treatment, I was feeling much better and the symptoms were pretty much gone. Good luck to you as you continue your treatments!

Medical grade Honey?! I have never heard of it... I will be sure to ask my Radiation Oncologist when I see him again.

I do use Aquaphor already and it seems to help some. I have not heard of Calendula, I will look into that more as well.

I have not had problems with urination but have been told that is a possibility in the future. Interesting about the squirt bottle of warm water. I have been told I may need to have a catheter if it gets bad. Squirt bottle may be a better alternative.

Thank you for your response!

Thank you so much for the responses! I really appreciate you taking the time.
My hubs IS the best!
I meet with my radiation oncology every Monday. I love them all!!
I will post updates as I go.

HUGS to all!