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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Karen wife of Phil's picture
Replies 5
Last reply 11/17/2010 - 2:18pm

My husband and I have been lurking in this community for quite awhile gleaning much needed information and inspiration. He has actually posted a few times but has had trouble recently with passwords...not very technically savvy I'm afraid. Anyway, we need some input on what is happening with him right now.

In Sept. of 2008 he was diagnosed stage IV with MUP. He had a lemon sized tumor in his right lung which has not changed since then. He has had tumors removed from near his lower spine and several from his intestines. On Nov. 4 he finished his final dose of compassionate trial of Ipi. The next day we ended up back at the cancer center for an emergency CT scan because of pain in his stomach. They found a new intussusception  (folding over of the intestine) which in him usually indicates new tumors. The surgeon who also read the CT saw some things on the other side of the abdomen. As is usual with surgeons he wants to cure with the scalpel. We feel this may be the progression of the tumors before the regression. We are thinking if he can deal with the pain, it might be prudent to take a watch and see attitude. Phil has had so many abdominal surgeries that this is the last thing he wants to do. Has anyone else had a pretty severe progression and then a regression? We really would like some input from anyone who has dealt with this. This board has been such a wealth of info...we so appreciate everyone here!

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Laurie from maine's picture
Replies 7
Last reply 11/17/2010 - 11:41am

hi,

I had hoped to go to the melanoma symposium last night but couldnt make it down from Maine.  Did anyone go?  I really like Dr Lawrence and Dr Hodi and would be interested to hear how it went and if any new info was brought up.  I was also hoping to run into people from this site, oh well.

thanks

laurie from maine

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killmel's picture
Replies 2
Last reply 11/17/2010 - 11:38am
Replies by: Anonymous, bcl

Hi Linda,

 

Any update on how Cass is doing. We all responded a few months ago whe she need help. Would appreciate know if our prayers are working for her.

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Melanoma Mom's picture
Replies 29
Last reply 11/17/2010 - 10:18am

My 14 year old very athletic son was recently diagnosed with melanoma. In the Spring I noticed that he would shift around a lot in the car, trying to get comfortable. After finding a bloody discharge in his boxers, I asked my husband to have a "guy to guy" talk with him, thinking it was hemorroids. He told his Dad that he had a "wart" hear his bum and just assumed it would go away. We had our Pediatrician look at it. He agreed it was a wart, but because of its size and location near the anus, he referred us to a Dermatologist. The Dermatologist agreed it was a wart and that he would freeze it over 2-3 visits. The first freezing was in late July and then another two weeks later. When we returned to do the third treatment, the Derm. suggested we do a biopsy to see what virus we were dealing with, as it wasn't shrinking. He assured us he wasn't worried and certainly was not thinking it was cancer. 10 days later he called us from his home and said that he had never in his 25 years of practice been so shocked to get a diagnosis like this on an adolescent and that he had the lab double-check that they hadn't confused slides. He recommended we get follow-up care in Boston as soon as possible (we live in Maine).

We met with Oncologists at Dana-Farber and a surgeon at Children's Hospital soon afterwards. While their Pathologists had not found the biopsy to be definitively melanoma, we all agreed that the "wart" needed to be removed. In the meantime, the biopsy was sent to various specialists around the country as well as Paris. It was also decided that two other spots that popped up in July, one on his inner arm and one on his torso, that originally looked festered would be removed. These had also been frozen by the Derm. so they weren't able to tell the original formation. There was also a strange colored spot on his outer arm that had been there 10+ years that had the Dermatologists at Children's completely stumped. 

The surgery took 4 hours and he was released that day. The surgeon felt things went very well and he got clear margins. We returned the following week to learn that the "wart" had definitely tested as melanoma. The two spots from July were pre-melanoma (can't remember the medical term for that) and the 10+ year old spot was benign. Next up was PET/CT/brain MRI. Those all returned clear of tumors,  thank GOD. 

Two weeks ago a SNB was performed and they took 4 nodes. Again, our son was amazing and left for home the same day. This Thursday, November 18, we will receive word as to whether the cancer has spread to his nodes and what they suggest for treatment.

We continue to be shocked by this terrible turn of events. Our son is so bright (attends a private prep school), plays three seasons of sports and also rides his bike long distances - Maine to Quebec in two weeks this past summer. He feels, acts and looks the same as always. We have no family history of melanoma and believe me, the sun has never shone on his anus! None of our children have ever had a bad sunburn. The physicians all seem very perplexed with this strange case. They have ordered genetic testing for the 23rd.

Please keep my son in your thoughts and prayers. His dream is to attend the United States Naval Academy and become a Navy Seal. 

At this point, we welcome encouragement and stories on "beating the beast". If anyone knows of other young melanoma fighters, we would love to be in touch with them.

Elizabeth

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Carrie's picture
Replies 8
Last reply 11/17/2010 - 9:45am

It's been a while since I have posted on here.  Here is a little background on my family...My mom was diagnosed with MM 3 1/2 years ago with four primary melanomas (deepest one had her staged at IIC).  She moved to Stage IIIB after several intransit mets were removed near the site of one of her primaries.  She has been NED for 2 1/2 years and is doing great!  Six months after my mom's originial MM diagnosis, my sister was diagnosed with MM with two primaries.  Fortunately, she is staged at IA.  She has been NED since her diagnosis.  Doctors have suggested there is a good possibility of our family having the familial atypical multiple mole melanoma syndrome.  We have not done genetic testing.

With that being said, I have been closely monitored by my dermatologist twice a year for skin checks.  I have a number of biopsies done with 3-4 moles being mildly to moderately atypical.  I just recently had a mole removed from my upper chest area.  My derm called me today with the results.  That mole was moderately atypical, however, the mole also had some characteristics that melanomas tend to have.  She started telling me what those characteristics were, but she immediately lost me on that.  On Monday, I'm going to get her to fax me a copy of the path report.  The following week, I'm going for a re-excision. 

I was wondering, is this normal?  She said none of my other moles that were atypical had these characteristics.  Should I request to have another pathologist look at the biopsy?  I have always thought that an atypical mole was atypical and melanoma was melanoma.  She has really confused me!  Any advice would be appreciated!

Thanks,

Carrie

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bcl's picture
Replies 5
Last reply 11/17/2010 - 2:00am
Replies by: bcl, Anonymous, kwahlbin, glewis923, lhaley

And if you are reading this, please also plan to advise us in future (on both boards) when you are changing something as significant as the site URL  - I  gave the old one out to a stranger and am not sure now if she will ever find the support she needs.

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washoegal's picture
Replies 8
Last reply 11/17/2010 - 12:51am

First the good news!  I am now 8 months NED!  Yahoo!  Quick review:  Diag Jan. 2010  3.1mm tumor RT , March 2010 SNB 2 nodes microscopic amounts of cancer, complete Lymph Node Dissection.  No other treatment.

My original Onc, who was in Santa Monica California, is now at Yale.  I followed up with the Dept head who is a brilliant man and has written tons of paper on melanoma.  However, he is not the doctor for me.  The nurse came in with the good news, the doctor follows up with  " if you survive melanoma" and starts giving statistics about recurrence rates, etc.  Boy, how to ruin a happy day! 

So...to make a long story short, I don't think this is the guy for me.  If I need someone fighting for me, I'd like someone a little more positive.  Would like some recommendations:  San Francisco, Santa Monica, UCLA area, all OK.  Unfortunately, Nevada has no Melanoma specialists.

Thanks,

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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Charlie S's picture
Replies 6
Last reply 11/16/2010 - 8:42pm

Some time ago, when this was MPIP, an upstart Don W started a website that to this day isstill maintained by him  hosted by Coleen, a melanoma survivor that runs an internet hosting company where people submitted photos of people and events relative to melanoma who chatted here and met one another.

It's worth a look to understand the history and community that existed because it matches names with faces.

http://melasuckanoma.com

 

Charlie S

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AndyD's picture
Replies 5
Last reply 11/16/2010 - 7:09pm

I've been stage 4 for a year or two and started an ipi compassionate-use trial in June that finished in Aug. I'm happy to report that my body responded to the ipi - Yay! cheeky and my last PET scan showed tumor shrinkage in both my lungs and leg. I get scanned every 6 months and the trial will be repeated as necessary if the tumors begin to grow again.

If you've had the ipi trial before, I was wondering how you feel physically and mentally? I felt tired, cranky, and somewhat confused for at least two months after my last influsion. Then I started to feel great (like my old self), but that only lasted a few weeks and now I seem to be regressing again...super tired and crummy feeling angry. I've had my blood work done and my gland levels are all normal (like thyroid). Do you think it takes a long time to get past ipi side-effects? Or is this simply how cancer progression feels? Will I ever feel like this again? smiley

Hope to hear your thoughts.

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BarbieGirl's picture
Replies 8
Last reply 11/16/2010 - 4:29pm

Six years ago today, our friend, Lesley, joined the angels in Heaven.   I only got to see Lesley twice---once at a MPIP 'bash' in Asheville, NC, and once at her home in Mexico..... Mexico, New York, that is.  We had a great time in Asheville... The party in my room went on until early-thirty!  Guitars, singing, chatting... I'm surprised the hotel didn't kick us out, 'cause we made a little bit o' noise! =)

"Love and Light" Carole and I went to visit her just a few days before she died.  It was heartbreaking---just a few months before in Asheville, Lesley was so vibrant, didn't look sick at all, sang all night with us, kept us laughing, and we became really close---and now, her new journey was to start soon.  When we got there, she lit up--she recognized us and welcomed us to her home.  She was sitting in her recliner and we had a great visit.  Within just a short time, though, literally within an hour or two, Lesley was hallucinating---possibly from the meds; possibly from the brain tumor(s), or both,----and seeing little green men with tiny, neon beady eyes, and fire around her bed (on it, under it).  Carol and I would go over and 'put out the fire" and tell the lil men to go away.  Sometimes we'd tell her there wasn't anything there, and she'd say.."I know.  I'm hallucinating." 

She was terrified and just wanted out of the house.  Her sweet hubby, David, gently helped her to the car, and the 4 of us drove around for a bit, seeing the big town (hah!) of Mexico, including the "bus barn" where Lesley had worked. (She had been a school bus driver.)    She was still seeing the little green men, now riding their bicycles backwards, coming for her.  I was sitting in the back seat, snuggling with Lesley, and I started singing.. asking her to sing with me.  We started with the song I wrote, "Wings of Hope", and she sang the words she could remember.   I think "Amazing Grace" was the next song, and by then she had calmed a bit, and sang with everything she had in her. Then we sang "Jesus Loves Me", and she sang her heart out!!    Through this horrible nightmare, Jesus held her in His hands, and gave her peace--enough to return home and not be afraid.  .  David can correct me if I'm wrong, but Lesley hadn't hallucinated before, and she didn't again after that one night.  I can't tell you what it meant in my heart to be there with Lesley through her worst time, and to be able to sing about Jesus with her!   A coincidence that Carole and I were there? Not a chance. 

Lesley, I love and miss you, and am blessed to have known you.  I shall meet up with you again someday!

Big *Hugs* to David and the girls today,

~Lisa~

 

David and Lesley:

 

In Asheville:

Glenda, Dian and Lesley: 

Note:  Dian was doing interferon during the bash---can't believe she even made the party---From Spokane, WA to Asheville, NC!

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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Springbok's picture
Replies 3
Last reply 11/16/2010 - 12:19pm
Replies by: Lori C, dian in spokane, Anonymous

I went to a talk here in Calgary, a few weeks ago, in which the Gerson approach to health and curing cancer was promoted. SInce then , I have found a number of other clinics in Europe, Mexico and North America (eg. the Hippocrates Health Institute in Florida) which practice similar "treatments" - usually lots of natural juice, strict diets, and enemas aimed at purging the body of toxins and cancer cells (or starving the cancer cells).

The Gerson Institute, in particular,  makes some specific claims about improving the prognosis of those with Melanoma. However, there are a number of rebuttals of their claims on the Internet from the established medical profession , including teh American Cancer Society.  These note that none of the Gerson claims have been proven by peer reveiw or experiment.

No doubt these clinics charge an arm and a leg for treatment, with questionable results (though a fresh juice diet can't hurt).

I wonder if the board members have any personal experience with these clinics, because drinking a glass of fresh juice every hour sure sounds  preferable to  engaging in "chemical warfare" and surgery that the cancer hospitals of the world promote?

 

Springbok

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Suzan AB's picture
Replies 3
Last reply 11/16/2010 - 8:12am
Replies by: Suzan AB, Dynasysman, Fen

Waiting sure does suck the big one.  I believe it is one of the major stressors for me, the not knowing...Here's the deal.  Waiting for confirmation that the nodes or I should say tumors in my right lung have doubled in size and  had uptake are melanoma (please tell me it was a mistake).  Seeing Dr. Daud next tuesday for options.  I was hoping to hear from someone yesterday, but alas the PET scan disc was sitting on someone's desk.  UGH!  I was hoping to get whatever out before Dec. 1 when my deductible goes up to the astronomical amount of $10,000.00.  yes, you read that right. 

Going though loads of emotions at the moment...

Suzan AB

Stage IV

Presently...One Day At A Time.

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kellie1979's picture
Replies 10
Last reply 11/16/2010 - 7:06am

I posted earlier this week that I had not got my pathology reports back yet from the doctor and was afraid of the unknown.  Well I got the phone call today at work that I do have Melanoma.  They want to schedule for me to have surgery to remove the area on my back, and to have tests done to assure that it hasn't spread.  I am going to go to a different doctor, I called them today and they said once they recieve the pathology from my current doctor then they will call me next week to schedule my surgery.  I still don't know the depth or anything, my doctors office didn't even know.  The pathologist called them and told them that it is Melanoma so that they could call me and let me know before the weekend.  Any advice on how to get through this from here would be great.  I am trying not to worry and hoping that it hasn't spread but every time I look at other moles that have changed recently I just worry more.  The current doctor said I need to have a chest x-ray is this standard procedure after being diagnosed?

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Wendi Lynn's picture
Replies 10
Last reply 11/15/2010 - 6:23pm
Replies by: Anonymous, LBN, Napa K, Wendi Lynn, Jan in OC, Kim K, Fen

Hi All!

I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors....

Thanks in advance!

Wendi

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ChristineL's picture
Replies 2
Last reply 11/15/2010 - 5:46pm
Replies by: Jerry from Cape Cod, Anonymous

I've heard about AHCC here and there (mostly there!) and was wondering if anyone would put in their 2 cents as to whether it may be worth it?  Stage IIIb, I figure I may give it a try.  My mel. onc. is skeptical, because she hasn't heard of it.  Thanks for sharing!

ChristineL

Fight like hell

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