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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Shelby - MRF's picture
Replies 7
Last reply 6/13/2013 - 10:46pm

The Melanoma Research Foundation is working hard to make our website an even better experience – where the community of people with melanoma, survivors, researchers and caregivers can find and share valuable information and support, as well as find out about opportunities to get involved.

We value your opinion, and invite you to take a moment to complete a brief survey on how you think about and search for essential information on our site. The survey will take no more than 10-15 minutes, and is followed by a few very important exit questions. Here’s the link: http://bit.ly/106golB

Thank you for participating, and be sure to share the link with friends – the more input we get, the better your experience with the MRF website will become!

Because we are hoping to get a new website up and running as soon as possible, we’re asking respondents to complete the survey by Thursday, June 13.

Sincerely,

The MRF team

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Charlie S's picture
Replies 15
Last reply 6/11/2013 - 9:52pm

This month, in 1987 a surgeon stuck a knife in me to remove a lump.  That lump, a lymph node,  ended up being a lymph node that had been completely replaced with cancer and after an exhaustive pathology, and examination by  an electron microscope, six months later was determined   to be  Stage Three Malignant Melanoma with an Unknown primary.

Plus one year, that was a quarter of a century ago.

My prognosis?  Time bomb.  It was not a matter of if but when.  There was no MRI, there was no CT , there was no PET, there was no Sentinel Node Biopsy, there was no Clarks , there was no Breslow, there was no internet, there was no MPIP, there was no MRF and  only two researchers, Seglar at Duke and Rosenberg at NIH  had an interest in melanoma.  I saw them both.

I went crazy, got a Macrobiotic Reading in DC, moved in with a bunch in Boston that were followers of Michio Kushi, drifted away after a year and wnet about living.

Fast forward nine years later to 1996 and I felt a new lump.

I could go on and on, but since 1996, when I became Stage IV, melanoma and I have have been in several fights.

Once, I openly defied melanoma to give me its' best shot.  It did, but what I did not realize is that it would go after my friends, and it killed many of them.

Once, I met a lady here, Kim Hanley (Kim from Iowa) and we ended up being lovers, and I ended up being her caregiver and she ended up dying in my arms

At her death, is when I first met Melanoma face to face.  Moments after Kim died and her body went cold, a person threw their body across Kim and then was inches from my face laughing, but scared.  The evil in that persons eyes were evident as was the aura of death, yet there was fear.......fear that I would not acknowledge; and that person ran from the house.  I do believe to this day that it was melanoma fleeing and Kim threw it out.

My patnet is seriously out of date about my 7 recurrences and Kim are not documented here and how I overcame them, but know this:

Charlie 26 Melanoma Zero.

If I can do it, so can you.

Take THAT Melanoma

Cheers,

Charlie S

 

 

 

 

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Tony_T's picture
Replies 2
Last reply 6/26/2013 - 2:35pm
Replies by: parkmk80, Janner

Came across this site with a Google search and am quite impressed with it. I am hoping someone can help me decipher what seems to be different information regarding dysplastic nevi. I am 53, male. About 3 years ago I went for a derm follow up on my wife's request to have a "suspicious" mole looked at. The dermatologist told me at that time not to worry. This asymmetrical mole has been there for many years, I would say maybe 10 and has transformed very little to my untrained eye over the years. Has it changed, yes, but as measured by years and not months. Recently, my GP referred me to have this looked at again, since she was unaware of my previous dermatology assessment, so i went to the same dermatologist. It is the only asymmetric mole on my body, right abdomen. I would say I have less than 50 moles all totaled, so is this one the ugly duckling? The resident suggested I have it removed. The senior derm gave me the option of 6 months watchful waiting. I opted for the surgery. Thing is, during the procedure, I asked some questions and the resident MD said there was about a 30% chance that this could be a melanoma, and depending on the pathology report, different options would exist, one including lymph node removal. I am an extremely anxious person, especially for medical issues and of course this statement floored me. When I googled the topic I read in some places that up to 10% of the populations have these dysplastic nevi. I imagine that if 30% of 10% of the population developed melanoma, the incidence would be much higher. Other facts about me, no melanoma in my family (mom had basal cell from sun worshipping) she is 80 and still kicking, the mole measured 6mm x 6mm, it is the only one on my body, I am Mediterranean descent so no fair complexion, freckles, blue eyes etc. I am worried sick about the possibility that this event could lead to a melanoma diagnosis. Any help from anyone who is familiar and up to date with what the true reality is would be greatly appreciated. I am really trying to understand and put into perspective how probable is it that I am a melanoa patient based on this. The anxiety is getting the better of me and i will not get my results for several weeks still

Thanks so much to everyone who takes the time to answer

Tony

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Husband doing well after the surgery last Thur day. no real side effects but pain from the remaining lymph nodes coming out. Called Dr Zager (Melanoma surgeon) and they won't know Amy more till the Wednesday cancer boarfd meeting. guessing there will be some systemic treatment, pills etc.
Dr Toloza did remove his surgery but we are waiting yo hear from his office what the plan is for thebling cancer. Guessing it would be radiation

my husband is glad no long surgery but down once again as the plan is not known to us yet. plus both cancers are still growing.

I know we have to wait, but open to thoughts or prior experiences.

Thanks Mary

Hugs to all, patients and care givers.

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ecc26's picture
Replies 3
Last reply 6/10/2013 - 6:28pm
Replies by: Tim--MRF, ecc26, SteveH230

I finished my last course of IL2 5 weeks ago and now must start Ipi due to progression. I have been looking for information regarding side effects of having the 2 therapies relatively close together but have pretty much come up empty. I know you have to wait at least 4 weeks after IL2 to start Ipi, and I'm past that point at 5 weeks.

Does starting Ipi close to finishing IL2 increase the likelyhood or severity of Ipi side effects?

Has anyone else had the therapies relatively close together who could share their experience with severity of side effects? 

Also, anyone who has had Ipi after IL2- were the side effects similar, or did you get completely different side effects with each therapy?

I'm relatively concerned (as are my doctors) that I will have an increased chance of the severe colitis/colon perforation because I had colitis with the IL2. I'm also wondering if having the 2 so close together puts me at any higher risk for the more severe/immune mediated side effects if my immune system is already "up in arms" so to speak (I did have many tumors shrink or dissapear with the IL2).

Any insight or information would be very helpful!

Thanks

Eva

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tony9511's picture
Replies 2
Last reply 6/11/2013 - 9:13am
Replies by: buckytom, Muru

Hi just finished my neck dissection for stage 3 melanoma.  I mean I have finished my physical therapy.  My neck is still sore and swollen 2+months after the surgery.  I am scheduled to start interferon soon.  Anybody have a similar situation with the neck nodes swollen after surgery?  Thanks.  I have regained full movement in my arm and shoulder, although parts of the shoulder are still numb.  I had 38 nodes removed.  This surgery was a result of a recurrence.

 

Tony

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lrkg1234's picture
Replies 9
Last reply 6/15/2013 - 2:16am

Scott had his last dose #4 of IPI on April 18th.  He had his scan early May.  The scan showed growth in tumors and a few new ones.  His energy level was very low and was spending a lot of time in bed.  Tumors began popping up and were visible through the skin and a few above the skin.  Things were looking bad.

Suddenly, in the last week, he is full of energy.  He worked in the yard all day today and is spending more time at the office.  Crazy Good!  He is not on any medication other than pain medication. No steroids or anything else.

Now if some of these exterior tumors would go away that would be encouraging!  I hope Ipi I is doing something.  It could be that his body is enjoying a break from treatment, but it could be a positive response. 

He is like a different person!  I think he could do other treatments now because he's seeming like his old self.  Hope this lasts.

Question:

Has anyone had Ipi work for them? Was it at the 8-12 week mark or more like 16 plus weeks?  When do you think you knew that is was doing something?  

Tell me something good....... :)

Lisa (Scott's wife)

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Anonymous's picture
Anonymous
Replies 0

Severe body rash after5 days on full dose Zelboraf. Stopped x 1week, resumed half dose. Rash continued, low grade temp., swollen knuckles. Had to stop again. Anyone had similar experience? Able to stay on Zelboraf? Anyone try prednisone or other treatment? Thanks in advance, Jean

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/12/2013 - 8:15pm

Severe body rash after5 days on full dose Zelboraf. Stopped x 1week, resumed half dose. Rash continued, low grade temp., swollen knuckles. Had to stop again. Anyone had similar experience? Able to stay on Zelboraf? Anyone try prednisone or other treatment? Thanks in advance, Jean

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Ed Everest's picture
Replies 16
Last reply 12/17/2015 - 10:50am

An internet friend and I run a Facebook information and support group for those with vulva and vagina cancers and related issues.

I've been searching the internet for information about melanomas of the vulva and vagina. This is a summary of my current understanding of the topic, based solely on what I've found on the internet. I stress that I'm not medically trained, but I do have a science degree from a university which does help me considerably in understanding articles and scientific papers and determining how reliable they may be. I thought it worthwhile to post the information I've found into this forum, as melanomas of the vulva and vagina are rare and there's not much info about them on the internet.

The American Cancer Society on its website says "Around 5 of every 100 melanomas in women occur on the vulva, usually on the labia minora and clitoris. They make up about 6 of every 100 vulvar cancers."

There are two kinds of vulva melanoma (perhaps more but I haven't seen any reference to any others) - cutaneous and mucosal. Both start in pigmented cells called melanocytes.  

Cutaneous melanoma of the vulva starts in melanocyte cells in the skin, usually on the outer (large) labia. It's the same kind of melanoma that occurs elsewhere on the skin, the one that is commonly caused by too much exposure to ultraviolet light in sunlight or the ultraviolet light used in tanning beds, and sometimes it's a consequence of inherited genes.

Mucosal melanoma starts in melanocytes in mucosal membranes that line some of the inner parts of the vulva including the inner lips and near the entrance to the vagina. **

Mucosal membranes can contain considerable numbers of melanocyte cells. It's not yet known for sure why melanocyte cells occur in mucosal tissue but they do, and they can give rise to mucosal melanoma in the vulva, vagina, cervix, anus, sinuses, mouth and other parts of the body where mucosal tissues occur.

Cutaneous melanoma is the same kind as the skin cancer melanoma most of us have heard about. The earlier cutaneous melanoma is found and surgically removed, the more chance it won't cause any further problems. If cancer cells have detached from the initial site and moved through the lymph system or blood vessels to another site or sites, often firstly to nearby lymph nodes, it's considerably more difficult to treat.

As far as I know, mucosal melanoma is the only kind of melanoma that occurs in the vagina and in the cervix, and it's even rarer in those places than it is in the vulva.

Mucosal melanoma of the vulva and vagina and cervix is so rare that experts are still developing their understanding of how it develops and evolves and the best ways to treat it. As with cutanoeus melanoma, it seems that surgery to remove it while it's in early stages of development currently offers the best chance of preventing further problems. Because the vagina and the inner parts of the vulva are hidden from view to casual observation, mucosal melanoma is less likely to be discovered early on than is cutaneous melanoma.

Scientists and the medical profession are still at an early stage in their understanding of mucosal melanoma of the vulva and vagina and cervix. There's not much information about it on the internet and it's barely or not mentioned on the biggest and best general cancer websites I've searched.

An article published by Dr. Richard D. Carvajal, "Memorial Sloan-Kettering Cancer Center, New York City", gives the clearest introduction to mucosal melanoma I've found on the internet. I've put a link to his article below. He says among other things:

"Melanoma, regardless of where on the body it occurs, originates from normal pigment cells called melanocytes. These melanocytes produce melanin, the vital pigment which protects the skin from damage caused by the sun's ultraviolet rays. Like any other cell in the body, melanocytes can transform into cancerous cells, and when this transformation occurs, the end result is the development of melanoma. Although normal melanocytes are present in the skin, they are also present elsewhere, such as the mucosal surfaces of the body. These mucosal surfaces line the sinuses, nasal passages, oral cavity, vagina, anus, and other areas. In fact, while there are approximately 800 melanocytes per square millimeter in the skin of the abdomen, there are 1,500 melanocytes per square millimeter present within the mucous membranes of the nose and mouth. Like the melanocytes found in the skin, these mucosal melanocytes can also become cancerous. This transformation results in the development of a type of melanoma called mucosal melanoma."

"Although first described in 1856, mucosal melanoma is not a well-known entity due to its relative rarity. Indeed, of the 69,000 cases of melanoma diagnosed in the United States in 2010, less than 5% were mucosal melanoma. Slightly over half of all mucosal melanomas begin in the head and neck region, approximately one quarter of mucosal melanomas arise from the anorectal region, and another 20% arise from the female urogenital tract. Melanomas originating in mucosal surfaces lining the esophagus, gallbladder, bowel, conjunctiva, urethra, and other sites are far less common."

"While melanoma arising from the skin and mucosal surfaces all originate from melanocytes, cutaneous melanoma and mucosal melanoma differ dramatically in their behavior and underlying biology. The initiation and development of cutaneous melanoma is usually associated with a history of sun exposure, particularly during childhood; however, this association is certainly not the case for mucosal melanoma. Indeed, at this time, no clear predisposing exposures, family history, or other risk factors have been established for this disease."

"As with most cases of melanoma, complete surgical removal of the primary mucosal melanoma provides patients with the greatest likelihood of a cure. ... ".

There is some very interesting and reasonably promising research and some trials going on at present on new ways to treat metastatic melanoma, including looking for ways to encourage the body's immune system to destroy the cancer cells. The most promising aspect of this new research and trials to me is that it's working down at the molecular level where the action really is.

If you visit links I posted here, you may encounter statistics, and worst-case scenarios, and discussions and comments that may not be good for your nerves even though most of them probably don't apply to your particular situation!

A paper called "Primary mucosal melanomas: a comprehensive review" provides good information and discussion about mucosal melanoma, albeit rather difficult to understand in places. Its address is http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

I quoted above from an article by Dr. Richard D. Carvajal above. It's good but it rather emphasises the negative rather than the positives at times, perhaps because its title and chief intent is "A Call to Arms in the Battle against Mucosal Melanoma". Its address is http://www.susanfazio.org/mucosalmelanoma.html

If you've been diagnosed with melanoma of the vulva or vagina you've joined a pretty exclusive club, and at the same time you've joined another very big club. In the US for example the American Cancer Society says "The American Cancer Society's estimates for melanoma in the United States for 2013: About 76,690 new melanomas will be diagnosed (about 45,060 in men and 31,630 in women).

** Wikipedia in an article called "Mucous membrane" on the page http://en.wikipedia.org/wiki/Mucous_membrane says:

"The mucous membranes (or mucosae or mucosas; singular mucosa) are linings of mostly endodermal origin, covered in epithelium, which are involved in absorption and secretion. They line cavities that are exposed to the external environment and internal organs. They are at several places contiguous with skin: at the nostrils, the lips of the mouth, the eyelids, the ears, the genital area, and the anus. The sticky, thick fluid secreted by the mucous membranes and glands is termed mucus. The term mucous membrane refers to where they are found in the body and not every mucous membrane secretes mucus."

"The glans clitoridis, glans penis (head of the penis), along with the inside of the foreskin and the clitoral hood, are mucous membranes. The urethra is also a mucous membrane. The secreted mucus traps the pathogens in the body, preventing any further activities of diseases."

Here's a link to what may be an important news item that just appeared in my inbox via Google News. The link to the item is

http://www.domain-b.com/technology/biotech_pharma/20130608_molecular.html

It starts:
 "Genome sequencing reveals mucosal melanoma's bullseye news 
08 June 2013
"Scientists may have found a molecular 'bullseye' for a rare form of melanoma, opening up opportunities for new targeted treatment, according to new research being published in the Journal of Pathology.Genome sequencing reveals mucosal melanoma's bullseye news
08 June 2013

Genome sequencing carried out at Cancer Research UK's Paterson Institute for Cancer Research at the University of Manchester has revealed that the genetic fingerprint of mucosal melanoma is completely different from that of its more common counterpart – cutaneous or melanoma skin cancer."

Back to my post, if anyone reading this post sees any errors or misinterpretations, or you can add more information, please do post below.

Support groups for those with vulva or vagina cancers or vin or vain can be found by putting "vulva cancer" into the Facebook search window.  

Cheers - Ed.
9th June 2013.

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JoWen's picture
Replies 2
Last reply 6/9/2013 - 7:41pm
Replies by: hbecker, JerryfromFauq

Just an update since I last posted about Joe's scheduled MRI and CT.

Joe's results came back on the MRI of the brain and CT of Chest, Abd and pelvis, and I am so relieved to report that all was negative.  There were two adenomas noted on the adrenal gland, which showed no concern at this time, but will continue to watch.  The BRAF was reported to be negative for mutation.  The additional biopsy that was done by the Dermatologist 2 weeks ago came back as negative and she stated it was a "blue mole"

So for now Joe remains at stage III, with NED....we continue to be diligent, knowing that changes can occur at any time.  He will continue on the "observe" interdisciplinary plan between surgical, medical oncologists and dermatologist every three months with repeat cxr/ct

Wendy

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bikerwifee's picture
Replies 19
Last reply 6/14/2013 - 9:02am

My husband and my best friend passed away Wednesday at home surrounded by his family and best friend. No more struggles and no more pain.

Lynn was a biker and a cival war reenactor and a veteran so what a send off he had. He was buried with his biker colors and escorted to grave site by a mile long of nothing but bikers. The thunder rolled.

Lynn was saved so I know he rest safely in the arms of jesus. Dont every give up Lynn fought till the end. Thank you all for the support and love.

God Bless
Belva

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bikerwifee's picture
Replies 2
Last reply 6/9/2013 - 2:37pm
Replies by: Tina D, lrkg1234

My husband and my best friend passed away Wednesday at home surrounded by his family and best friend. No more struggles and no more pain.

Lynn was a biker and a cival war reenactor and a veteran so what a send off he had. He was buried with his biker colors and escorted to grave site by a mile long of nothing but bikers. The thunder rolled.

Lynn was saved so I know he rest safely in the arms of jesus. Dont every give up Lynn fought till the end. Thank you all for the support and love.

God Bless
Belva

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flvermonter's picture
Replies 5
Last reply 6/10/2013 - 5:46am

Hello,

 

My husband had the radical lymphdectomny on Thursday at MOffit in Tampa.   Dr Zager advised that he "..has alot of disease".  I asked what the prognosis is and he said "fair".  Also, that maybe he should not have the surgery to remove the lung cancer stage i.  He was going to talk to his thorasic surgeon.  I just went on the Moffit site and his appt for the surgery has been removed.  However, the   pulmanary and CT scans are still set for next week.

 

On Thursday after the surgery, Dr Z said he had ordered testing for genes and mutations.  Our appt with him is not until 6/24.  I think i will call him on Monday and ask the questions I am asking here.

 

When he said he had alot of disease, he went on to say some people have genes that impact how melanoma spreads and the speed at which it does.  He said that maybe do radiation for the lung and he could go locally for that (Moffit is 1.5hrs one way for us).  I am "assuming"  the gene testing will determine which treatment he will get in pill form. 

Again I am scared and did not tell all the information to my husband.  He does not know yet the surgery has been cancelled for the lung.  I thought I would wait till Monday when we can talk to the dr.  Why worry him over the weekend when we can't talk to them. 

Question, why not do the lung surgery?  It was all set to go.

What did he mean by " has alot of disease"..  I know these may sound lame, but there is still so much I don't know.

 

Thanks and hugs to all, Mary

Hugs to all, patients and care givers.

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