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.

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Noramott's picture
Replies 1
Last reply 1/3/2011 - 7:53pm
Replies by: Janner

My friend had his melanoma behind his ear and was cut quite a ways  down on his neck. 

 

The report says:

Pre Operative Diagonsis:  238.2: Preop Dx Atypical Melanocytic Proliferation/Melanoma Accession

Diagnosis:

Archival material and the pathology report have been reviewed.  Some sections exhibited residual proliferating melanocytes with atypia however these are adjacent to the previous biopsy sight and demonstrate no evidence of dermal involvement and the margins are widely clear.

Gross examination:

The specimen is labeled "R neck lesion: one suture superior, two sutures inferior" and consists of a teardrop-shpaed tan skin, 5.5X3.7 cm, with attached subcutis tissue, up to .5 cm in thickness.  A single suture is present along one edge designating the superior margin with a double along with opposite margin marking the inferior margin.  The single suture will be assigned as the 12 o'clock position and the double suture the 6 o'clock position using clock face designation.  

 

Then he had other places removed and this is what it says:

1) Skin, Mid Superior Back:

Pigmented Compound Lentiginous Nevus with Archituectureal Atypia, Cytologic Pielmorphism and focally involved margins.

  2) Skin, mid inferior back

Pigmented compund nevus with focally involved margins.

 

So if anyone can help tell him what this means, that would be wonderful.  There ought to be a section at the end that says, "all these big words means blah blah blah."  Thanks for any help.

 

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Linda J's picture
Replies 1
Last reply 1/3/2011 - 7:32pm
Replies by: Anonymous

I am considering doing the braf/mek combo phase I trial at PMH in Toronto. Are people seeing good results with these drugs?

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kinthai82's picture
Replies 1
Last reply 1/10/2011 - 7:45pm
Replies by: kinthai82

 

Happy New Year!

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2011. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with one of my classmates, would like to create a video on melanoma awareness.  We want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

We are located in the Orange County and people from Los Angeles, San Bernardino, Riverside counties are welcome! 

If interested, please contact me via this post, email (cynthiaLchen@gmail.com), or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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carol b's picture
Replies 7
Last reply 1/8/2011 - 2:30am

I start Interluekin-2 next tuesday at the Baptist Memorial Hosp in Memhpis Tn..I dont qualify for surgery because the tumor and lymphodes are matted and to close to the nerves and blood vessels under my arm and in my neck.. Can anyone tell me about what my first day will be like with the interluekin-2? thanks in advancesad

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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ockelly's picture
Replies 23
Last reply 8/22/2011 - 6:04pm

Is anyone out there, besides Michelle in VA, in this clinical trial?  Wondering if you are having side effects after injections?  

Any indication if you are receiving the drug vs the placebo?  We should hear this week if my husband, TJ (stage 3b), qualifies.

Kelly

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ktorrey14's picture
Replies 9
Last reply 1/6/2011 - 6:52pm

HI,

My younger brother recently moved to the Portland, Maine area & we are looking to find him a new doctor skilled in following up with his melanoma care.

He was diagnosed 3 1/2 years ago with Stage 2A NMM and moved from Minnesota to Maine a couple months ago.  We had a fantastic doctor here in the Minneapolis area who worked exclusively with melanoma patients so are now looking for someone in Maine to continue being vigilant with his care.

If need be, he COULD travel the two hours to BOSTON area where we know they would have many skilled physicians.  He just thought if there were a skilled Melanoma Specialist closer to him, it would work-out better for all these follow-up visits.

Thanks in advance for your help!!! :)

Big Sis KT

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Seems to have a lot of good stuff in it.

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Not all SPF 50 sunscreens are equal.

Do the best you can.

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Lori C's picture
Replies 9
Last reply 1/3/2011 - 8:01pm

I am sorry to pass along the news that Bill58 (stage IV recently found to have brain mets) died today.  Bill was very supportive of me during my caregiving experience - he is from my hometown (we went to high school together, as it turned out) and came to Will's memorial service.  He shared a doctor with Will and recently switched from Dr. Jon Richards/Sigrun Hallmeyer (will's initial docs) to Dr. Howard Kaufman in Chicago.  I was very happy he had chosen Dr. Kaufman and was so hopeful for him.  Bill often posted on here but I was not sure if his family would have access to notify the board....

He leaves a wife and three children. 

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lovingwifedeb's picture
Replies 15
Last reply 1/3/2011 - 10:06pm

I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

Father's Day - Stage 3B

July 22nd - Surgery

Choice - No treatment/Nutrition Based

5 Months - Happy New Years - New Tests - Stage 4 - Brain Cancer

No other "hot spots" in body found

 

My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis... now what?

Appointment with the neurologist on Monday.

Absolutely Terrified.

 

Deb

lovingwife to Bob, stage 4

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mike_nj's picture
Replies 10
Last reply 1/4/2011 - 10:41am

Hello all

I have been checking the board frequently but rarely see anyone around to chat with lately.

Anyway, I hope that this year is the year that the researchers connect all the dots and we can start talking about either curing melanoma or downgrading it to a chronic disease, but no longer life threatening for most people.

I still work and I am involved in building a cat litter plant so my 3 cats should be happy.  My family, threw me a surprise 60 b-day party back in November.

I am due for another checkup in May as I am now 6 plus years out from my stage 3B diagnosis.  Still have Lymphedema in my right arm and some external radiation scars but in pretty good shape, other than my knees (arthritis).  I still take an assortment of supplements as well

If I had to get this cancer, I am honored to among all of you, those we lost and mourn , those fighting with active disease, those like me in a holding state, the newly daignosed, and all the caregivers and doctors and nurses that are on our side.

Happy New Year

 

Mike from NJ

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nicoli's picture
Replies 2
Last reply 1/2/2011 - 10:01am
Replies by: Rocklove, JuleFL

Dear Melanoma (NOT!),

Well, 2010 has come and gone and only partially because of you, mel, it was without a doubt the worst year of my life. We had quite a fight. You did your best, even returning after I thought I had kicked your a**.  

But.....I'M STILL HERE!  And I expect to be here this same time next year, thanks to my God, my good doctors, and my treatment plan.

But will you still be here next year, mel?  Maybe not, maybe they will find a cure in 2011. Maybe 2011 is your final year, mel. Maybe. You BETTER be scared, mel, cuz nobody likes you mel, nobody is praying for you, nobody is working and fighting to find a way to keep YOU alive.

Maybe you better run home crying to your mama, mel, maybe you better go home and get your affairs in order, mel !

So here we go again, just you and me, mel. Ready?  CUZ I AM. Round One of 2011: Biochemo starts next Thursday. Let's see how you like it, mel.  I know I'm gonna LOVE it. Can't wait! Let's go.

Most sincerely,

Nicki, stage 3b

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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JewelryCrafterGirl's picture
Replies 31
Last reply 8/9/2014 - 12:47pm

Was wondering what your recovery times were like for the wide local excision and sentinel lymph node biopsy.  Am having mine done at Lee Moffitt (Dr. Zager) in Tampa, Florida on January 13 or 14.  WLE is mid back, SNB is either under arm or neck area.  They say six weeks for total recovery, but that some people are ready to go back to work in just a couple of days.

Thanks, Happy New Year!

Pennie

embrace the positive

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KellieSue's picture
Replies 4
Last reply 1/1/2011 - 7:48am

Brain Mri: Clear, thank goodness.

Ct Scan: definite shrinkage in neck and also stable disease. Lungs: about 4 nodules in each lung after 8 weeks of ALT. Darn!!!!!

So ALT worked on the neck and theres nothing else in the body or brain, just the lungs now. So 8 more weeks of ALT at a higher dose, Dr. Mo believes the trial people will okay it. I was the 1st person to do a 2nd 8 week treatment and I have shown progress in the past. I know this treatment and think I can handle it again.

Or high dose IL-2. He said we try it for a week, if I don't want to die then we do one more week. If I can't  handle it or it doesn't do any good it won't exclude me from doing ALT. Or we look at B-raf? Trial should be opening up in the next few weeks here he said.

 Really wasn't expecting these pesky lung nodules to be there. I was just hoping for stable disease. darn, darn, darn!!!!!!

Kellie, Stage IV since June 2008.

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Noramott's picture
Replies 7
Last reply 1/20/2011 - 4:35pm

I was just on here a couple of weeks ago asking for help for a friend that was diagnosed.  My husband passed away with melanoma 7 1/2 years ago, my mother passed away with it 37 years ago, my sister had one removed 17 years ago and thankfully is still with me.  Soooo, I go to the dermatologist every 3-4 months as a precaution because of the history and I have two kids, ages 15 and 12 ( the 15 year old already has had one removed between his butt cheeks...not a good experience for us or him).  Anyway, I went today and he removed a basal cell one, he thinks, but then said he has been wrong before and if it is a melanoma, it was caught early.  I wasn't worried.  I know that catching it early is the key, but all of the sudden it has hit me.  OH MY.  So pray.  You all don't know me, but just pray...for my kids....I am not scared, but then again, kind of.....................

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