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 1
Last reply 2/16/2017 - 8:49pm
Replies by: Charlie S

Dear MPIP Community:

A media outlet is seeking individuals for a potential interview opportunity ASAP. If you are a former tanner who used a tanning bed in your own home and would like to share your story, please email media@melanoma.org. Thank you!

Shelby - MRF 

 

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Dreaf01's picture
Replies 7
Last reply 2/21/2017 - 4:49pm
Replies by: Anonymous, cancersnewnormal, zfishberg, Nemesis, Janner

Just want to know why scans are not recommended for stage 1b/2A. My anxiety is getting the best of me and am wondering if I should be requesting them. I had stage 1b melanoma removed from my right upper thigh. Negative margins and negative nodes.

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Anonymous's picture
Replies 5
Last reply 2/17/2017 - 6:18pm
Replies by: SOLE, debwray, Janner

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

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Shaneswife's picture
Replies 4
Last reply 2/16/2017 - 8:41pm

Sigh. You ever notice that all we do with cancer as a care giver is wait. Wait for appointments. Wait for tests. And wait for results and then repeat over and over. I'm so darned worried about Shane's results. We get them Tuesday and my gut tells me his liver and bones and lungs will be better, but not in the brain. The brain will show progression. And if you can't control the cranial disease then what. I suspect he's in for another round of whole brain radiation before they switch him to immunotherapy. I don't even know if the combo is approved in Canada doublet. Anyone know for sure? I'm talking ipi/nivo. They will have to take him off the braf/mek if there is progressiono in the brain. He's highly symptomatic with neurological symptoms when not on 12mg of Decadron a day. Sorry for my vent. I'm just so tired of waiting.

Janis

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Charlie S's picture
Replies 5
Last reply 2/16/2017 - 1:37pm

Somebody, somwhere once said or wrote something that stuck with me about the adversity when your inner mettle is tested with a private storm  and how to deal with it:

Have a wishbone

Have a backbone

Have a funny bone

It sooooooooooooooo applies here I think as we all deal with the obvious.

Good tools methinks.

Just thinking out loud.

 

Cheers,

Charlie S

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Replies by: Bubbles, Spl25, Ed Williams

I know there are a few clinical trials looking into this, but I'm looking for data (even preclinical) regarding whether Melanoma cells are *more* or *less* likely to be recognized by cytotoxic immune cells after BRAF therapy. Has anybody heard of a CR or durable response to PD-1 *after* BRAF inhibition? I've certainly heard the stories of disease coming back "angry" after BRAF therapy (in the minority of patients, of course). 

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Anonymous's picture
Replies 4
Last reply 2/20/2017 - 5:43pm
Replies by: zfishberg, J.bun, Anonymous

Has anyone else experienced only fatigue & tiredness while on MEK/TAF?

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Anonymous's picture
Anonymous
Replies 8
Last reply 2/17/2017 - 11:00pm

I've recently had a recurrence of melanoma in three nodes (groin, pelvis, knee).  Other than the three nodes, everything else looks fine.  I had interferon in 2007, and had previously been in remission since 2012.  All of my previous melanomas have come on the same side of my body, from my groin down.  

I'm trying to decide what course of action to take next.  I'm being offered pembro, but want to know if this is the best, next step.  Doctors are confident it can be effective with the least side effects.  I'm BRAF positive as well.  I would appreciate any thoughts or advice.  I know there isn't any perfect option, but I'm asking what would make most sense for this stage?  Thanks, and best to all of you.  

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Gibsongirl's picture
Replies 13
Last reply 2/16/2017 - 11:21pm

Hello everyone, I'm a 37yo female who developed a small black shiny mole a few months ago. It was very tiny but was not a mole that changed, just popped up. I really just knew when I saw it. (I'm a midwife and have been in health care as a nurse for years).

They did a shave biopsy, which in hindsight I realize wasn't the best course of action on Monday the 6th. I just knew it was melanoma but the shave was pretty deep and I figured it would be gone. I was surprised when later that evening I took the band aid off and there was the same thing, same size in the same spot. I panicked knowing this can't be good. I got the call today 9 days later that yes it is mm. It was just shy of 2mm in the biopsy and obviously there is more still in my thigh. I'm scheduled for Tuesday the 21st for I guess what is a wide excision. They said they'd be taking a large area down to the muscle and I'd have multiple internal and external stitches.

The report said mm in situ. I ask her how they could determine that when I still have some in my leg. She didn't know and the surgeon is on vacay and won't be back until Monday but without WE they can't grade it? They won't be doing any lymph node tests until the lab results come back and say it is needed, but from what I have read it should be done at the same time?

If anyone has any advice and possibly if I should run to a different practice (I have national insurance that is good thankfully). I'm a mom to a 6yo special needs daughter and I need to make sure I'm doing everything right. I'm beside myself. I'd feel better if it weren't so deep. Someone with more knowledge please help, and be honest. Thank you in advance.

GG

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CindyCo's picture
Replies 4
Last reply 2/17/2017 - 2:36pm
Replies by: debwray, CindyCo, _Paul_

My mom had her first dose of Keytruda last Wednesday (Feb. 8) after 5 doses of radiation (which ended Jan. 27), with mostly fatigue and nausea as side effects so far. The primary anal mass has noticeably shrank since she started radiation, but there are ten or so new little white bumps all over the anal opening (they look like canker sores).  This morning, there are some new ones underneath an external hemorrhoid.

I sent a picture to her oncologist and he thought it looked like melanoma from the picture. The white bumps make it painful and stings when she urinates or tries to put ointment on it. Has anyone else experienced this, and did it turn out to be melanoma?  Is it possible for the primary to get smaller while there is progression elsewhere?

I always thought that melanoma wasn't painful, which is why I was hoping it was radiation breakage.  Also, the outbreak happened pretty suddenly and quickly (we see that area every day, so we would have seen them if they existed all along.  I know that it may take a while for immunotherapies to kick in, but these new developments make us pretty anxious.

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JustJaren's picture
Replies 5
Last reply 2/23/2017 - 9:51pm

Anyone had this? What was recovery like? Time frame? Any complications?

 

Thanks in advance!

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NSNewf's picture
Replies 11
Last reply 2/16/2017 - 11:20am
Replies by: NSNewf, slouttit, Mark_DC, debwray, jennunicorn, Anonymous

I am currently waiting for a date for an L5A neck dissection. I met the oncologist yesterday and my treatment option is HDI or nothing. (I am Canadian). IPI and Pembro are only available at Stage 4. There is a possibility of a trial HDI or IPI or Pembro.

Assuming I don't upstage from 3a following dissection and the trial is not an option what is the feeling about HDI given the results from Sunbelt Trial that doing HDI does not have the prognosis any better by doing observation? Btw sitting at home not working while on HDI would drive me crazy 

 Thanks for any feedback. Sorry to hear you are going through this. 

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Coming up, April 23rd.  Meet fellow patients and families.  www.safefromthesun.org

 

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_Paul_'s picture
Replies 17
Last reply 2/20/2017 - 6:45pm

 I handed up needing another operation.  I had another drain tube put in to mdrain the fluid from my chest. I am in the ICU waiting to get moved to the floor. I have to get healthy enough to get into the clinical trial.

 The good news is that I am healing. There is hope I will win the race and make it into the clinical trial in LA.

- Paul

 

To exist is beyond fantastic.

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MovingOn's picture
Replies 1
Last reply 2/15/2017 - 7:48am
Replies by: Anonymous

Amazing how quickly research is advancing. Genetics is an entirely new tool set for building possible cures. Glad that we at living in modern times and what seems like hyper-modern times for research advancements!

https://www.sciencedaily.com/releases/2017/02/170208111533.htm

Searching for clues about how the body signals the lack of oxygen in melanoma skin cancer, National Institutes of Health (NIH) researchers focused on HIF1? (hypoxia inducible factor 1 alpha), a protein that acts as a sensor for oxygen and nutrients in many types of cancer. They discovered 40 new genes that are either turned on or off by HIF1?, and 10 genes that were associated with the amount of time it took the melanoma to move from the original tumor to the rest of the body. They published their findings February 6, 2017, in Pigment Cell and Melanoma Research.

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