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.

multiple nodes involved, can I survive??

I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

Update on Jenna...Finally!

I am feeling guilty for not posting sooner, but we have been in the heat of it.  Jenna started to get really sick on the ipi trial, and we were thinking that maybe it was a good thing, but her disease continued to grow and spead.  She had bumps coming up everywhere...neck, chest, back, abdomen, even in the muscles of her arms and legs.  We knew we were losing ground quickly.  We had been pursuing MD Anderson for a MEK combo trial (since she responded so well to the MEK) for several months, and finally they were able to get her a spot in the BRAF/MEK trial...and none too

John from Bangkok checking in - encouraging news.

Hi all

Just though I would check in with a postive update. Since my diagnosis (Stage 3B - Lymph node in leg)  and LND operation back in Feb 2008 , some 5 PET Scans and numerous blood test later - no sign of disease. I went for surgery only option (no interferon or other treatment), and am feeling fit and healthy. Running "mini-iron-man" (running,cycling,swimming) events and enjoying life.  

Best of luck to everyone.

Live Strong

John from Bangkok

 

 

withdrawal symptoms from interferon?

About three weeks ago I stopped the self injections after nine months of treatment. Two days after my first missed dose, I started getting severe tendonites, and muscle aches, which gradually spread to pretty much every muscle in my body. Feels like arthritis. Anyone ever heard of this happening? My Onc. doesn't think it's related, but how could it not be? Symptoms diminishing somewhat, but still very much present.

Anyone heard from Lauren-how's jenna!

It has been awhile since Lauren has posted. I am worried. Anyone heard from Lauren?

Bruising and Melanoma

Posting for a friend who is concerned with bruising under the arm and chest that won't go away. Person is already dx with mel (in the neck area) and has recently found additional nodes that appear to be involved....neck and chest area.  Has anyone had experience with bruising and melanoma?

Thanks for your thoughts.

need 2nd opinion lung surgery

hi - derek has a metastasis in a right hilar node - it showed up on a pet scan 2 years ago and is now growing (although slowly) surgeon at our hospital says it is unresectable - would love a second opinion anyone ever have this done and who was your surgeon?

 

we are likely starting Il-21 vs DTIC in a couple of weeks but if this is removable we want that option - derek is 37 and in otherwise good health

 

thank-you

Good PET/CT

Hi all,

 

Just wanted to let you know I had my 3rd PET/CT last week and it went well. Still shows NED after a little over one year. I was diagnosed last July at age 26 with stage 3a melanoma on my foot. Currently in my 9 month of interferon injections and although it sucks..i am almost done ! Sending myself to Europe for a couple weeks come November to celebrate. I know one year NED is not much but i am trying to live my life like it will never come back ..even if i know there is a huge possiblility it will.

 

Life Is A Gamble

My husband, Bob thought the song from The Gambler, from Kenny Rogers was appropriate after his doctor's visit on Friday so I will work with him on this one hard as it might be. Betting is all about percentages, so if you are a betting man/woman and the stakes are high it just might be an all or nothing bet for you if your life is involved. This is how it went down for Bob with the melanoma specialist in the Portland area on Friday.

 

Facts:

• Bob has melanoma stage 3, it's been 30 days after surgery

Numbing around Cervical Lymph Node

Jim's very enlarged lymph node (cervical) no treatment at all is feeling numb all arount part of it going up into the scalp and  up above the ear.   Does anyone know what this means.  Thank you.

 

Take Care

Sherron, wife to Jim

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