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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What does co- existing nevus: present mean? Also wonder if the fact that biopsy report states there is a downward growth of the malignant cells into the dermis is of any significance. My husband seems to deal with this cancer diagnosis as he did with his prostate cancer diagnosis- not really a big deal or concern. Almost an ignore cancer. Thinks it is rediculous to follow up often for skin checks and lymph node checks on self. I feel doctors around here play down cancer diagnosis. I have read John Hopkins recommendations for his stage of prostate cancer and given his age he would not be a candidate for the active surveillance plan he was offered and chose. Anyone else out there with prostate cancer and melanoma? 

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JoshF's picture
Replies 17
Last reply 5/23/2016 - 2:44pm

So I saw the oncologist today regarding the trial of genetically modified T-Cell theraphy. Sounds so interesting that this can be done. Anyway, thank you to everyone who helped formulate questions, get my thought processes going etc... as it was a productive meeting....from an informational perspective. Now the scary part....

After he discussed trial I asked many questions. The thing that stood  and . If I go straight to tril without surgeryand trial doesn't work, what am I looking at? He asked if I was referring to life span so I said yes. He said a year. WHAT??? He wanted me to understand this was statitcally speaking but still...not my thought going into this. So I asked about surgery...and this got interesting...

Apparently the scan shows a bit more disease than I was led to believe from my regular oncologist and thaough he couldn't give me specifics, he said I had a moderate tumor burden and from what I had descibed from my regular oncologist, this may not be a simple surgery to remove an orange sized mass. Anyway, he said that surgery wasn't unresonable and it would delay the process but when I asked if I was his son what would he recommend, he responded surgery. So he set me up with surgeon who made an appt for next Wednesday. After walking out of there I couldn't help but feel this was coming to the end of the road. Now I'm a Christian and I have strong faith. I'm not necessarily a big fan of the institution of religion but I do believe and have been building a strong life in prayer. I had been praying to come out of this meeting with a plan something set that I can work forward to. So long story short, my aunt who was sitting there has an old boss of hers walk by her and they connect. Guess what she does? The Executive Director of Oncology Dept. My aunt texts me to come back to hospital and I will see surgeon this afternoon. I prayed hard for that...answered.

Sorry I know this is getting long winded but you have to remeber this is my day from 9-5:30. I see surgeon, he goes over CT and said it's 50/50 on how extensive surgery will be. He wants to get everything he can once he opens me up. So I go back tomorrow for liver CT Scan and a colonosocpy on Monday with surgery scheduled for the 27th. He just wants the best roadmap possible before he goes in. I did all the bloodwork, EKG, pre-surgical stuff. Hopefully this will putme on the road to winning the fight. I'm just terrified....I can be dead in a year? Thought never crossed my mind...I feel way too good for that! Not to mention that on way home from his game my 12yr old son pushed me on what was going on so I had to have the talk with him and it was the hardest thing to do in my life. The fear and pain I saw on his face and when he lost it; I've just been heartbroken. My biggest fear is the pain this can cause my kids and I have no control over it. I'm going to fight...as docs said today...compatmentalize....surgery, heal and while healing decide on a trial.

Thanks for listening, been an exhausting day of ups and downs. Thank you to all who read,support,share and inspire. This forum is like family. It really helps me. Celeste is a treasure, Ed, Mat, KyleZ, Gary and so many more are just first class individulas. Going to try and sleep...be well and to Charlie S...keep on keepin on!!!!

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/25/2016 - 8:57pm

Hello! Has anyone has this? And used the results to help determine course of treatment?

Low T cells indicating need for more aggressive care versus standard? 

My mom just had done at UCSF, and we are thinking she may vear towards a trial now versus standard care based on what we are guessing results are.

 

Thanks!!

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jpg's picture
Replies 6
Last reply 5/20/2016 - 6:05pm
Replies by: jennunicorn, Shelby - MRF, Anonymous, youngann

It happened to me when I went to the google search and put MPIP.org in.  It says your information is not safe here.  I came in through the website to be safer?

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arborbnb's picture
Replies 6
Last reply 6/30/2016 - 3:36am

Not sure if anyone remembers us .  I just wanted to pass along some good news and hope to those fighting the fight.  Peter was dx Stage 3 in 2001 and had 3 surgeries, a year of Interferon and radiation.  He has been NED since December 2001.  The radiation has left him with muscle contracture/ scarring etc in his upper back and he still takes gaba for neuropathy BUT he has beaten all the odds.  Don't give up!

 

Julie

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JohnA's picture
Replies 1
Last reply 5/19/2016 - 7:47pm
Replies by: Bubbles

Hey folks, 

 

These are being tested in other cancers, but I wonder if they will come to have relevance for the melanoma community?

I thought some of you might be interested-

John

 

In the 61-patient study, about 30 percent of those with Merkel skin cell carcinoma treated with Merck's avelumab saw their tumors shrink or disappear.

Avelumab, which German Merck is developing with Pfizer Inc , belongs to a class of drugs called PD-L1 inhibitors that block a mechanism tumors use to hide from the immune system, allowing it to recognize and attack the cancer. They are closely related to the PD-1 drugs already on the market from Bristol-Myers Squibb (Opdivo) and Merck & Co (Keytruda) seen as major advances against melanoma, lung cancer and other malignancies.

Roche's Tecentriq earlier on Wednesday became the first approved PD-L1 drug, gaining U.S. approval to treat advanced bladder cancer.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/19/2016 - 4:47pm
Replies by: JohnA, DZnDef
Charlie S's picture
Replies 4
Last reply 5/19/2016 - 2:15pm

That is how aldesleukin also known as Interleukin-2 is coming into me one bag at at a time every eight hours.

Nine bags so far I think since starting Monday morning at 7. 

As expected, this one week on after one week off is really giving me a chemical ass whipping.

My eyes are running and boy does it burn.

I am sweating a lot and that burns too.    And all of the juice coming out of me stinks.................I mean REALLY stinks, I smell like a toxic waste dump.

The rigors ( shakes, chills, whatever you want to call them) are worse this time and came on faster.  Thank goodness for the demorol that stops it.

My skin had not finished the first peel before coming back, and it is now.................well it is a mess.

I have a tablet (as in a Big Chief paper Tablet)beside of me and all through the day and I scribble what I would say in a post or just scribble,  then, all through the rest of the day I pluck away in my digital journal on my laptop and after many hours, I paste it and  it becomes this post.

I'm the only melanoma person here in ICU doing IL-2 this time.  Everyone else are renal cell folks.

This is no cup of tea for me, but it seems lke the other five people here getting IL-2 are having a tougher time.

Don't know, but everyone else here except me have people staying with them and at the risk of sounding crass......it seems  to me that the caregivers are causing the ICU nurses more trouble than the patients.

I think this has taken me two days to compose,, edit and spell check. so I'll go ahead and post.

My mind is really starting to turn me into a strange ranger, so dunno if I can go more than 12 or not.

Chemically yours,

 

Charlie S

 

 

 

 

 

 

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youngann's picture
Replies 9
Last reply 8/3/2016 - 4:55pm
Replies by: Anonymous, youngann, Janner, LaurieGayle

So my surgery for lymphoscintigraphy and excision is set for June 2nd. My doctor has requested that I join a clinical trial whereby instead of 2cm margins on the incision, I may be chosen to have only 1cm margins taken.

Apparently, this is a world-wide trial and they're trying to see if smaller margins result ONLY in a smaller scar as opposed to missed cancer cells.

I'm a bit nervous about being part of this trial and would like some opinions please.I've been clinically staged at 2b with more than 1 mitosis/mm2

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Anonymous's picture
Anonymous
Replies 11
Last reply 5/19/2016 - 9:55am
Replies by: Gene_S, jennunicorn, wifeofron, Anonymous, beans920

My husband was just diagnosed with melanoma. 2 years ago he was diagnosed with prostate cancer Gleason 6. He is on active surveillance at this point. His choice. 

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the shadow's picture
Replies 3
Last reply 5/20/2016 - 8:55am
Replies by: Janner, the shadow

First, I'm sorry if this is not an appropriate topic for the Board, since it's not directly related to melanoma.

I had a mole biopsied because it had a scab. The mole came back as a dysplastic nevus with severe atypia. I've had dysplastic nevi in the past (and probably have others), but never one with severe atypia.

The biopsy was reviewed by a dermatopathologist. Is there any point in seeking a second opinion, or should I just be glad it wasn't diagnosed as melanoma and get the WLE?

Thanks!

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HZol's picture
Replies 10
Last reply 5/20/2016 - 9:00am
Replies by: mary1233, HZol, Anonymous, CHD, Lori Ann, jyc

Hello, My name is Heidi and I'm very new. I had a tumor removed from my vaginal area last month...for 3 months we thought it was a cyst and waited for it to go away, well it more than tripled in size in the month of March so on April 15th, had it surgically removed and biopsied by my gyno. The next week, we got the call...vulvar mucosal melanoma. Since then, its been oncologists and pet scans and brain MRIs. Pet scan...negative. Brain MRI negative. The tumor level was T4b which apparently is deep so they are doing a sentinel node biopsy as its "probable there could be node involvement". June 6th is radical vulvectomy for clear margins and node biopsy to stage me and create treatment regiment..my situation is extremely unique as I just had my right leg amputated last summer (from a role swing accident)...and the cancer is on my right side, therefore node biopsy will be on right... originally my oncologist was concerned how node involvement would affect my limb (lymphedema) and future prosthetic wear so they suggested I wait for biospy...then another oncologist suggested due to depth of tumor, we should biospy. We eventually decided to just do the biopsy during the cancer resecction surgery, as this mucosal stuff can be microscopically present and not be detected by the pet scan. ... What questions should I ask at this point? Our heads are spinning and not straight so I don't want to miss things. Any input would be greatly appreciated.

HZ

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/17/2016 - 9:38pm
Replies by: jennunicorn

Hi everyone I aplogize in advance I do not have melanoma, or I don't think I have melanoma yet.   My question is with regards to how fast melanoma grows.  I noticed a dark spot on the bridge of my nose in 2011.  I thought it was dirt at first and picked at it.  It never went away.   It has been there since 2011 and from what I've observed it has not changed or grown.  It does get lighter and darker depending On the time of year and my skin tone.   I became somewhat health anxious when my friend was diagnosed with melanoma and this spot on my nose stuck out.   I have been to the dermatologist several times since this spot appeared and my last visit was in Feb.  They have looked at it but never removed it or commented on it...  In 5 years if this was a sinister mole... Would I be seriously ill by now and would it have significanty changed? Thank you all

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sister of patient's picture
Replies 16
Last reply 5/19/2016 - 5:19pm

Just a quick update on my sister. She had a brain MRI Friday morning and onc called last night confirming what was suspected (I suspected anyway) - brain tumours, big and small but too many to even count, several of the larger ones are bleeding.

I posted last week about her sudden development of severe tinnitus and so aready knew that brain mets are often a likely cause. She sees a radiologist first thing tomorrow morning and we already know that gamma knife is what they're going to try. Treatment will now be interrupted (ipi-nivo) but, again, we knew that would happen too.

What I'm reiterating here is that it's the excellent information I find on this board and the sharing of outcomes that makes me not so afraid of the future for her. Because this board exists and because people selflessly let others know what's happening, we know what we can expect with disease progression, treatments and outcomes. I have alot of hope for her and I will continue to do so!!

Best to all,

Barb 

 

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