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.

radiation

Just curious if any one has had radiation following a radical lymphadenectomy of neck nodes? I noticed that it is not even a treatment option on this website.  I was recently diagnosed with melanoma and have had surgery one month ago to remove approximately 30 nodes in my neck area (primary melanoma on my nose).  They said 13 nodes were positive out of 30 for melanoma.  They said it is too soon to start any systemic therapy and want me to wait until I heal further from the sugery before I start radiation.  Radiation likely to start 6-7 weeks following surgery.  I am BRAF neg.

Enlarged Thyroid following Ipilimumab - anyone?

Hi, 

Finished the Ipilimumab treatment successfully 3 years ago. Now - high PTH and enlarged parathyroid. Anyone experienced this side effect and if so - what is the treatment?

Steven O'Day

Hi, 

We know Dr., Steven O'day moved from the Angeles Clinic to Beverly Hills Clinic, but we are patients from the past and wish to consult with Dr. O'Day about a side effect that now appeared (a few years after end of Ipilimumab treatment). Does anyone know his email or where he is?

The Battle Rages

Hello all, first post on this wonderful site I found yesterday. I was diagnosed stage IV metastatic melanoma in April of 2014. During this past 14 months of course my family and my life has been turned upside down. Had a brain met surgically removed and then had 3 sessions of the newest radiation treatment on the bed of the tumor. Results come back Melanoma metastatic stage IV.

Melanoma Specialist Dr. Daniels Recommendations PLEASE CHIME IN

 

We are getting close to a course of action.  Charles Oncologist recommended surgically removing the mid lobe of the lung and all the lymph nodes.  Post surgery , starting Charles on Vemerafenib + MED.  If that course of action failed, immune therapy would be recommended.  Charles has had huge anxiety about the surgery - what if all the lymph nodes weren't successfuly removed, why go through trauma if this is not going to be 100% successful.  

Diabetic and first PET/CT scan

Good morning everyone. I found a new lump in my neck and had fine needle biopsy, negative. Now scheduled for PET/CT. My concern is I am diabetic on insulin and the facility won't do my scan if my blood sugar is not below 170 prior to scan.  I am eating high protein, very low carb and adjusting insulin per my Diabetes doctor instructions. Does anyone out there have any experience with this situation? As you may imagine it is causing me stress that this scan may be canceled and I know stress drives up blood sugar as well.

Newly Stage IV

My history:

Diagnosed with Acral Lentigous Melanoma April 2nd 2015 on bottom of my foot.  PET scan confirmed groin nodes were involved.  Surgery April 30th, removed tumor from foot and CLND right groin.  13 nodes were positive but the "deeper" nodes were free of cancer.  

depression following treatment

My husband's treatment with Pembrolizumab was successful, but he has become very depressed. The treatment did affect his thyroid and he does take synthroid now to replace what his body can't produce. According to recent blood tests, his thyroid level are now normal. However, he remains depressed.

It is so weird, you'd think he'd be very happy to be in remission.

Has anyone else run into this?

3c adjuvant nivo/ipi...need some help first post.

First of all i want to thank everyone for responding and thank the users who regularly post here. My name is Jamie I'm 36 year old male with 3 young kids. I have been reading this site for 2 months. Here goes, Diagnosed late April...lymphendectomy on left groin mid may, pathology came back with lymph node involvement in 5/13 nodes. Two weeks after surgery i had a in transit legion show up right by area where mole was. Had in transit spot resected. June 17th had ct scan that showed enlarged iliac node...positive biopsy so back to surgery i went.

1 year NED

Some good news to share with everyone...had my one year scans today and groin lymph node ultrasound....everything came back normal...still stage 3a....probably the happiest day of my life

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