MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

failure to diagnosis, mistreatment and now Stage 4, poor prognosis

My son noticed small sore on heel in April 2017 and went from one VAMC Dr to another, no diagnosis, just pain meds until August when sent to UPMC Wound Care in Altoona. No Dr saw him, a CRNP, began debriding and it wouldnt heal. Noticed lumps in left ground, still no biopsy, sent to VAMC Pittsburgh, Dr took one look and told him he had cancer. This was Sept 2017. Biopsy in October confirmed spindle cell melanoma, Stage 3. Finally in Dec began immunotherapy, unsuccessful, metastisized to lungs. Went for 2nd opinion at Hillman Cancer Center and told Stage 4, only option clinical trial.

Best sunscreen

I am just wondering what everyone has found to be the best sunscreen??? I have bought several different brands all claiming to be “the best” and I’m not thrilled with any of them. 

I need to find one that works the best in athletic situations for my son...he is a huge baseball player and he has been really good about applying and reapplying this season  but we always were so diligent even before he was diagnosed because he is a red head, blue eyes, etc...

Questions.....feeling lied to

Hello everyone, I had to stop ipi/nivo combo after 2 treatments because my oncologist said I was allergic to ipi. I believe that. I had a treatment of just nivo last Monday, the 25th. They wanted to check me, so I went back the 28th. In the meantime they had scheduled me for treatment for 2 weeks. Then called me and said it should have been 3 weeks and rescheduled me. I asked the NP on the 28th if that was correct and had they adjusted my dosage. First she said it should be every 2 weeks then she told me that the FDA had approved a 3 week dosage. I'm dosed at 1mg/kg.

Husband- recent melanoma diagnosis

Hi my name is Melissa. My husband Patrick who is 38 y/o just got diagnosed with melanoma. He had a mole on his chest turn dark and went to dermatologist who removed it. We received a call on Wednesday of dx and was made an appointment for today with a surgical oncologist. He was set up for a wide excision and lymph node dissection for 7/10. His path report showed Maligant melanoma w/superficial spreading, Clark level IV, Breslow 1.1 mm at least, growth phase vertical, epithelioid cells, mitosis 2/mm2, primary tumor classification pT2a.

2nd Scan Results

Hello all,

Brain MRIs?

My husband is the patient, 3C, chest. SLNB and WLE, three positive nodes, right axilla and supraclavicular - so going in two different directions. He’s in a blinded study, nivo or nivo/ipi at a lower dose. The working assumption is he’s on the nivo/ipi arm.

We’ve been very pleased and impressed with the melanoma center specialists and staff. This is the first “huh?!” question we’ve had.

1st Dermo Appt - Dysplastic Mole (??) + Other Biopsy

Recently, I’ve noticed a few odd spots on my skin and decided to go get them checked out. The dermo saw the mole on my back I was concerned with and said it definitely needed to be biopsied, but she felt strongly it was a dysplastic nevi. She said it is very unlikely it’s a melanoma at this point and that according to biopsy, might need deeper excision if the lab says it’s severely dysplastic as it could eventually turn into melanoma. Does this sound correct? I also had a scrape biopsy on a spot on the back of my head that started as an itchy bump, went away then started itching again.

'New' Here with a few questions

I would like to introduce myself. While I am 'new' here, I'm not. I have found the information on this board invaluable and extremely helpful since my first biopsy, which was in April. So, THANK YOU! Reading information on-line is overwhelming, but reading the information on the board made me feel like I had power and knowledge as I waited for biopsy results, many times.

I am stage 3a. After my WLE and SLB, I had two lymph nodes show microscopic foci of small nests and single mart-1 postive cells. One each on each side of my groin. Pet scan is clear.

Remembering Nancy

I haven't been here in a long time. I don't even know how to navigate this site. For the old timers who remember our special Nancy...the news today has broken a piece of my heart. Although not melanoma...another life taken way too soom. If there are any oldtimers still here...I will always remember her courange, her spirit, her abiliity to connect and affect so many. RIP dear Nancy. With a broken heart...Hugs...MarieM