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.

Severe muscle spasms - burning pain

Has anyone had severe muscle spasms and burning pain?  I have this down the right side of my body, neck, shoulder, upper arm, abdomen, groin, leg, and foot.  This is the foot I had lost sensation in from the removal of the brain tumor.  The surgeon was quite positive I would regain sensation so at first I thought maybe this was related to regaining the feeling.  Then it moved up into my abdomen and should.  I'm worried this is due to tumor growth.  I'm worried.  Especially since this is only on my right side.  If the turmor is growing could it cause spasms?

Thanks

Jennifer

Interpreting CT of chest with contrast

Wouldn't you know we would get the radiology report on the Saturday before a holiday! We will have to wait until Tuesday to talk to anyone, and it will have to be a Nurse Practitioner as the oncologist is away at a conference. Arghhh! To give a little background, hubs was diagnosed with nevoid malignant melanoma in 2015, did a year of interferon treatment, and in January 2107 was diagnosed with metastatic cancer after a PET SCAN lit up parotid gland and very small spot on left lung. he's had 3 out of 4 combo treatments (Opdivo and Yervoy) and is scheduled to get the 4th one on Wednesday.

Scarey Saturday

Things were such a normal morning. Until I saw shane and he was in such a fog. Couldn't speak and was wandering around. I got him to sit down and he started seizing. Grand mal seizure. We are in hospital now and they are loading him up with anti seizure medications. It's absolutely terrifying to see him seize. I really thought he was dying right then in my arms. 

 

Janis

Update on Jamie

Hi Everyone,
Jamie's wife contacted me and said ever since the melanoma went to his spinal fluid it's been hard for him to post here.I'm heart broken to inform you all that hospice has been called in to assist Jamie. Please keep him, his 3 adorable young kids, and his wife Shawn in your thoughts and prayers. It was his birthday yesterday.

Terminology Question ...

Hi all,

Here's a question that I'm curious about:

When someone mentions "tumors" in their postings, are they usually out likely referring to moles, or would it be more likely lumps? I constantly see posts where people mention something like "...I found two more tumors ...". Just trying to correctly understand the terminology.

Thanks,

Jeff

Scan results

Greetings  warriors . ...Had a pet scan last  Thursday , and here is how it reads:

"There is a mildly  hypermetabolic complex nodule  in the superior  right  upper  lobe that has SUV max of 1.2 new since the previous  study of 4/28/16. This lesion  may have an underestimated  SUV-max due to its  small  size. This could  be either inflammatory  /infectious  or metastatic . Previously  in the same region  there  was  a  cavitary lesion  that was not metabolic . "

Melanoma and Late Pregnancy

My step-daughter, who is eight months pregnant, has just had a preliminary diagnosis of Stage 1B melanoma on the sole of her foot. Apparently she will have a wide excision and a sentinal lymph node biopsy within the next couple of weeks. She meets with specialists next week to make a plan, but meanwhile, we are all very worried for her and the baby. It would be great if someone who's been in a similar situation could share their experience.

The roller coaster ride starts again!!! Please help!!

Hi all,

    I visited this site a lot but don't write on it a lot. I care so much for everyone here and truly hate this disease!!! My husband had scans on Thursday and has a new 1.5 cm nodule in his liver. Everything else is stable but having a different organ involved is terrifying. He had a MRI this morning so we're in the awful state of waiting and wondering what's the best option. Please give me advice on what's best for Bill.

love to all,

maureen

Immunotherapy and Steroids...Need Input

I thought I had read somewhere that you could start immunotherapy when on steroids in some situations. Is this true? Can anyone point me in the direction of articles, studies, etc.? My daughter just finished two weeks of WBRT on Wednesday. They tried tapering her quickly off the steroids so she could begin immunotherapy by 5/31. She ended up having a seizure and falling, so they went back to original dose. Now, they're tapering slowly over a month and she won't be able to start immunotherapy until June 28th! I'm so afraid that the tumors in her body can come back/grow during that time.

Pages