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.

Wife of Stage IV husband

My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long time to recover was going to go back to work Feb 3. Started IPI in JAN It didnt work.  he had multiple seizures on Jan 27--scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation  Tumor size of baseball.

Merck EAP

Hello everyone,

 

I am a newbie here and trying to catch up. Ihave read about Merck pd1.

 

I know that there are a few locations sites in California that people are saying are open.

 

I would sincerely appreciate it if anyone can CONFIRM that a Merck EAP is in fact open and are now going thru the qualification process or has a date to start infusions.

We live in Northern CA, My  husband is stage 4.  He  has failed IPI & Braf. We need to get into the Merck EAP ASAP.

Thank in advance for your reply. God Bless you all!

 

Recent diagnosis

Hi! I have recently been diagnosed stage 1b melanoma. I'm a new mom a freaked out that I won't be around to see my baby grow up. Can stage 1b make it? Even if the primary is 1.8mm? 

altenative treatment to slow mets

anyone have experiance with the following where there has been some research on

celebrex 400 to 800 mg a day

metformin;titrate

ketogenic diet

What do Clinical Trial Cover? (Finacially)

Hey all,

My Oncologist has suggested I try to get into a clinical trial that is a IPI+PD1 trial in phase 3. the issue I have is that closest center that is doing the trial is 4 hours away in Los Angeles. The clinic also is not covered by my HMO.

I was wondering what clinical trials cover from a financial standpoint? Do they pay for travel, hotels, Dr. apointments, the medications, etc? I know that getting the right care is the most important thing but if I am going to be out of pocket $100,000 I won't have a house to be a survivor in.

Melanoma survivor, but now I have a found a lump! Any advice would be wonderful:)

Hello,

 

I am hoping some of you might have experience in what I am going through as I feel really alone. I just turned 26 a couple weeks ago, and have had the fear of my Melanoma coming back for a 2 years now. I was diagnosed with Superifical Spreading Melanoma on my left side of my stomach in 2012 Stage 1B with a mitotic rate of 2. I had the usual procedure to remove quite a bit of extra tissue around it, and from that moment on I've been worried.

Drug MSB0010445 along with SRS

My husband is stage 4. his doctor is recommending a clinincal trial MSB0010445 along with SRS.

Anyone in this trial??? I would be sincerely greatly if you shared your experience. (ie: did the drug work for you, side effects, anything else we should know)

My doctor does not have this trial so please  recommended trial site. We live in California. This would be our first trial.

Thanks for helping us.

Penelope

Help with Pathology Report

Hi all,

My mother is going in for a wider excision on Monday for an atypical mole she had removed.  I know there is a TON of knowledge on this board and many of you are extremely educated when it comes to how to interpret pathology, etc.  I just want to know if anything looks extremely alarming on her path report and if conservative excision is appropriate.  The report is as follows:

Diagnosis: Compound Nevus with moderate to focally severe atypia

Microscopic description:

Today found out mother diagnosed with choroidal melanoma

My mother is currently going through one of the toughest situations of her life. As her daughter, I truly don't know how to vent or show how scared I am about her diagnosis today. Today after 4 weeks of visiting specialists and getting referred from hospital to hospital, it has come to the conclusion she has Choroidal Melanoma. It all started about a month ago when she started to complain of flashes of light, black spots and floating objects from her right eye. She said she had immense pressure on her right side of her head and her headaches and migraines were getting worse.

RIP Dad

I don't often talk about my father here, but melanoma has claimed another warrior today.  At age 89, he was luckier than most that melanoma entered his life in his early 80's.  He fought cancer his own way.  The one advantage to being old is that all cells grow slower - even melanoma.  RIP Dad!

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