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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Tim--MRF's picture
Replies 1
Last reply 12/21/2015 - 3:54pm
Replies by: Shelby - MRF

The FDA has just announced new proposed regulations that will have a major impact on the prevention of melanoma. These rulings are not final, and starting Monday December 21 the FDA is soliciting comment on the rulings. PLEASE PLAN TO LEAVE COMMENTS IN SUPPORT OF THIS!

The MRF and others have been working for years to have the FDA regulate tanning beds more strictly. We know that most melanomas in the US are related to UV exposure. In 2009 IARC, an arm of the World Health Organization, listed UV lamps as carcinogens in the same category as tobacco smoke.

The FDA held hearings in 2010 then nothing happened. About two years ago we heard that regulations were drafted but, by rule of Congress, had to be reviewed by the Office of Management and Budget for impact on the economy. This fall we secured a meeting with OMB and were joined by ACS, AAD, and others interested in this issue. We were able to convey the significance of these rules and the urgency of having them enacted.

They have now cleared that hurdle and await only public comment before becoming reality. The FDA is proposing two rulings. The first is about access and specifically requires:

--no one under 18 can use a tanning bed

--everyone using a tanning bed must sign a document that acknowledges they have been informed of the risks

--this document must be renewed every 6 months

The second rule requires owners of tanning salons have specific safety components in place, including prominent warning signs, emergency stop buttons, and better eyewear.

Please plan to leave your comments at regulations.gov starting Monday. The MRF will have sample language available on our website soon.

This is a great step forward, and an opportunity for the melanoma community to show the power of our voice.

Tim--MRF

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/20/2015 - 4:39pm
Replies by: nc1983

Anyone else taking supplements while on keytruda?  Consulted with a naturopath doc that specializes in cancer. Taking an integrated approach and inquiring about others experience with this approach. 

 

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tschmith's picture
Replies 3
Last reply 12/18/2015 - 4:54pm
Replies by: Jubes, tschmith, jenny22

I woke up thinking of Artie this morning.  Many of us know what a gigantic fan he was of Star Wars so today is Artie Day for me.  Here's to you Artie!!!  You were so smart, brave and caring.  You responded to so many of us with knowledge, wisdom, and those endearing "dunnos".  I never met you in person, but you were my friend and I miss you.  He was willing to do what it takes to find the cure and be a part of this puzzle.  I believe Brian posted information about a scholarship fund being awarded in Artie's name and someone else donated the amount of a ticket to Star Wars to MRF in Artie's name.  Both are ways to honor him if you can.  But... telling your story and helping others is what Artie, Jerry, and many others who have now passed did and hopefully we will together contribute to the conquering of this terrible disease as well as all cancers.

Blessings to all of you...

Terrie

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davekarrie's picture
Replies 2
Last reply 12/19/2015 - 3:17am
Replies by: davekarrie, jamieth29

Hello all, I am on the Taf/Mek combination since early November and it is working well, only have a few spots left.  I know this treatment usually works for about 10 months then Mel finds a new way around.  Here is my question, for any of those that have had durable responses to Taf/mek combination, did all your tumors disappear right away?  are you still on TAf/Mek? I am just wondering when to get off and get onto an immunotherapy. I was on Keutruda but had progression.  i know that they are bringing in immunotherapy with the taf/mek also.

Thanks for any insight!

 

Dave

Live life to the fullest and enjoy each day! #noonefightsalone

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WallyE's picture
Replies 3
Last reply 12/19/2015 - 2:46am
Replies by: WallyE, Kim K

Hi all

I recently had a total gastrectomy and apart from finding features of an invasive metastatic malignant melanoma, they also identified tumour emboli in angiolymophatic spaces.

​My oncologist was not very clear on this except to say that it had something to do with the presence of tumour cells in my bloodstream raising ther possibilioty with further metastasis and as such further treatment would be required.

To this end she has ordered further evaluation of the removed tumour to establish BRAF mutations for possible enrolement on a clinical trial.

Can anyone out there please tell me what the complications of these tumour emboli are?

Kind regards

Wally

One day at a time.

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mjanssentx's picture
Replies 5
Last reply 12/20/2015 - 4:40pm

Warriors - last night was my final shot of Interferon after nearly 150 total shots for the year.  Not looking to debate the efficacy of Interferon again but rather feeling good about making goals.  Last year Interferon, was the only real option for 3A patients and I was determined to get through the year.  And while we will never know for sure if Interferon helped keep me NED for the full 13 months since being diagnosed...but for me it was better than doing nothing.

So looking back over the past year, so much has changed with melanoma patients having so many more treatment options to help us in this fight.  We took great delight in watching Jimmy Carter keep going at 91...but then we all had to take a reality check watching Artie not make it to the Star Wars release tonight.

Best of luck to making your personal goals in 2016...Michel

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Totally Blessed's picture
Replies 19
Last reply 12/21/2015 - 3:40pm

Hi. Like many here I've been lurking and reading since my husband was diagnosed. Here's his history so far...

Nodular Malignant Melanoma removed 11/9/2015

Both radial and vertical growth.

Lymphocytic response: non-brisk

No ulceration

No Mitotic rate

Clark's level: III/IV 

Breslow thickness: 1.4 mm

As mentioned above he had the tumor removed  11/9/15 by our primary Doctor.  Our Doctor sent him to a dermatologist after receiving the results.  The Dermatologist said he was referring my husband to the Cancer Center in Ann Arbor, Mi.  We had the Ann Arbor apt last week and found out yesterday his WLE and sentinel lymph node biopsy is scheduled for February 11th. 

Here's my question/concern.  Even though we believe we caught this early, is it normal that a Doctor would wait this long to do this surgery? 

Any thoughts would be so appreciated.  

 

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Replies by: Meli.Will, Patina, Anonymous, Janner, Corinne

Hi everyone,

My mother was diagnosed with melanoma 20 years ago after I noticed a small black spot on her back one night we were at a function that had an ultra violet light, which made the mole stand out.  Thankfully she checked it out.  Anyway, she had a wider excision, regular checks for a couple of years and no further issues, however it has left her fearful of going to the doctor nowadays.  I don't know the stage, but think it could have been stage 1 because it didn't go to the lymph nodes.

I have noticed in a similar region on her upper back, that there is an ugly blue/dark grey spot, maybe 5mm in diameter.  It looks like a large blackhead that should be squeezed, but I don't think it is, and have tried without success.  I looked at it again this week when she had a top that revealed it, and the top layer of skin over appears broken.  It isn't oozing and my Dad still thinks its just a blackhead.  I'm concerned it is melanoma, perhaps from the original one 20 years ago, however my mother is refusing to discuss it, or get it checked.  She is 71 and quite a fearful person these days and easily overwhelmed.

I'm wondering if anyone has any knowledge of secondary melanomas etc showing up as something like this years later, or has a similar experience?  Any information would be greatly appreciated.  I might even try and get a photo to show.

Thanks for you help.

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Replies by: Rita and Charles, davekarrie, Anonymous, Mat

Hi all, just asking if anyone has experiences really bad nose bleeds - like it comes gushing/dripping out of my husband's nose, at least 2x a week now.  We saw oncologist yesterday, and his blood levels are all good.............but this morning I saw for myself and no one's nose should bleed like his did this morning.  

He is on BRAF combo and it is working......anyone out there with nose bleed as side effect?

Thanks on ANY info anyone can share - thanks.

 

Rita

Rita

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Anonymous's picture
Anonymous
Replies 12
Last reply 12/18/2015 - 9:48am
Replies by: Anonymous, emagdnim83, Ed Williams, Bubbles

My husband is on his 3 treatment of Opdivo and having many unpleasant side effects.  Curious as to what others are experiencing as well.

 

thank you!

Bin

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Sparky's picture
Replies 6
Last reply 12/26/2015 - 9:51am
Replies by: _Paul_, Sparky, Azcaddyman, mjanssentx, Janner, Anonymous

Hi, everybody ... please bear with me; I'm new.

To try and cut a long story as short as I can:

Age 65 (male), born and brought up in Cape Town, South Africa, and barbecued myself on the beach there on several occasions (near-cremation, more than just sunburn...), which with (then) red hair, green eyes and fair skin was clearly not the thing to do. But who thinks of these things as a teenager? You just spray on the Solarcaine after the deed, and let it go. 

In 2005, at the age of 55, I had a melanoma in situ removed at Orpington Hospital in the UK. I had gone to the dermatologist about a little black spot on my lip, which I didn't like the look of. It turned out to be a harmless little thing called a venous lake, and while I was there the dermo said, 'Well, since you're this age and come from a hot country, let's just look you over while you're here.' And so the fingernail-size in-situ (it was pink rather than any of the other colours) was found on the small of my back and taken out by a consultant dermatologist who specialised in pigmented lesions. After the excisional biopsy, there was a further WLE. She said that would be the last I would hear of it. 

I have had dermatological checkups (back in South Africa) every six months since then, and he has been mapping one or two odd-looking frexle-type things. Very conscientious guy.

Now, three weeks ago in Frankfurt, Germany, in the course of a dermo check-up here with an apparently amazing dermatologist who unfortunately has the personality of a roll of barbed wire and who spends three minutes with you if you're lucky, he drew caircles around four lesions, photographed them, and said: 'Those need to get taken off by a surgeon, and soon. They're very active.' On the note to the (plastic) surgeon he referred me to he had written 'highly dysplastic nevi, suggestive of Superficial Spreading Melanoma'.

Last week, the first two were excised by the plastic surgeon, and the second two yesterday. The result had come back from the lab for the first two, and she told me yesterday that there is 'no melanoma'. She said that there was nothing more to be done, barring regular checkups, of course. I'll have the result for the other two when I go to have the stitches out on 4 Jan.

My worry is, firstly, whether what has been done is enough, and whether I can acccept that there IS in fact no melanoma associated with the first two (is the lab report reliable?), and whether this has arisen from the in-situ melanoma ten years ago now? If this is so, will I have to take extra care checking? I believe it can erupt many years later than that as stage 4 in some organ without any skin problems ever occurring again. 

I am aware that on this site I am in the company of many people braver and muchc better informed than I am, and to them I say sorry for this trifling query. But I have been very concerned. I'm in a country where I do not speak the language, and the dermatologist obviously wasn't in class on the day they covered 'communicating with your patients'.

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kathycaribe's picture
Replies 3
Last reply 12/15/2015 - 7:40am
Replies by: kathycaribe, Janner

i haven't told my husband and just found out today.  i live in Mexico and my dermatologist did a 2mm margin excision of a mass on my back.  i had it forever and within the last year family has said to get it checked out.  i cannot see it so i have no idea.  i had a long distance (ironman) triathlon planned so i waited to do that.  the last week the lesion began to itch and weep clear fluid.  Dr. Google reassured me that it could still be an SK so i went with that.

2 days after the triathlon i had it all excised with 2 mm margins.  after reading this site i now know why the derm would not take larger margins - he was saving a SNB possibility for me.  i even told him to go ahead and go for giant margins but he said that if we did that it would limit me.  SO glad he's a smart cookie.

so got path report back today.  clark III, Breslow 2.8mm, ulcerated, nodular, but clear margins and only 2 mm2 mitotic rate.  derm asked me to do some blood work (specifically LFTs and LDH, after Dr. Google i now know why) and i'll get that tomorrow.  

i have contacted an onc in a neighborning town and she says to do the blood work and CT scan before seeing her.

so i guess i need to tell my husband.  we'll see.  

questions.  is a melanoma specialist onc all that important at this stage?  my thinking is that they will be looking at the CT and rereading the path and ordering the SNB.  

is a WME (i think that is right, wide margin excision) necessary if my 2mm margins were clear?

is my thought process correct?, blood work, CT and SNB?  Is the SNB most important person the pathologist or the surgeon?

 

thanks!

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Hi, my 5 year old daughter was diagnosed with malignant melanoma (conventional) on her chest/abdomen in May and I'm looking to connect with other parents in similar situations.  Following a very large wide excision, the currently has NED but her oncologist last week pointed out a few spots she wants us to watch very closely and it's making me relive the last 6 months.  Our dermatologist has said that this will come back (given her age and location, they are presuming a genetic defect in her immune system).  Thanks in advance for sharing your story and connecting!

Jenny

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Beckyinsandiego's picture
Replies 14
Last reply 12/19/2015 - 10:13am

 Hi everyone it's been a long time since I checked in. I was diagnosed in 2007 was stage 4 melanoma that had spread to my lungs, liver, sternum and under my arm. The Angeles Clinic in Santa Monica gave me a combo of Abraxane and Avastin and put me in remission in two years.  Unfortunately the tumor in my sternum is in the bone and it refuses to go away. I did 3 1/2 years of Keytruda, the drug that we got FDA approved and the same drug that saved former President Jimmy Carter's life. Now my tumor is not responding anymore and they want me to try a new trial called OX40.  It is a phase 1 trial by Pfizer pharmaceuticals.  Has anyone tried it and what side effects have you experienced? It is a 6 month trial with a 60 minute infusion every 2weeks. Please respond ASAP if you have  Heard of it or know anyone that is taking it now. 

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Bruce Davis's picture
Replies 2
Last reply 12/16/2015 - 9:56am
Replies by: Bruce Davis, BrianP

I've been on zelboraf for 4 years and 3 months. Nodules in lungs have been stable for almost 4 years. The two largest being about 4 mm along with other scarring on CT scans. Might a PET scan show this as being NED enabling a vacation from zelboraf with close follow-ups. Wanted to know if anyone has had similar experience.

Presently it's "Don't give up."

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