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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AvaL's picture
Replies 2
Last reply 2/17/2017 - 3:17pm
Replies by: AvaL, jennunicorn

Hi, I know my hubby prob needs to get this looked at but I just wondered if others had had an itchy scar some months after the WLE. Hubby stage 3a and had WLE in November. He's not felt much around the area apart from yesterday when it became  itchy suddenly. I can't see anything at though around it, no colouration, no new bump etc. Anyone else had similar? God I hate this! X

 

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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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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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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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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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Hi, here's an update on my husband Steven. Mets in brain, and body. WBRT in January. He was tapered off decadron  and was taking nothing anymore on Tuesday and Nivo/Ipi started 2 days later. He already was extremely tired after radiation, but tapering off and the infusion all together made him even more exhausted, on Friday, he could hardly do anything and was having a fever. After talking to oncologist I brought him to ER, but nothing really explained the fever and they said it was too early for auto-immune side-effects. MRI was also done, but no real explanation, one big tumor had shrinked they said, other were still there and seemed to have some edema, but they wanted to wait with steroids to soo how it developed, so we went home again with some steroids ' just in case'.... On Satuday he got realy lethargic and confused and bad balance so I called again and ended up in the ER again en they decided to start on steroids  by IV, as a tablet at home did not have effect. So now on Monday we are home again, and the IV's with steroids really brought him back. However, it also stopped the immune cells working....so immunotherapy is not doing the work right now. We are going to taper him off in the next weeks, but I'm so nervous that he will get oedema again. Whenever he seems little more confused I get nervous. He then also is difficult to talk to and does not raelise what is going on. Today he's really clear and has insight on how bad he felt this weekend and remembered how weird he reacted to me. But it's very hard dealing with that and I even had to get angry to get him in he car to the ER, he was SO lethargic ! .....sigh.... Any experiences, insigts, helpful comments are welcome

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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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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adriana cooper's picture
Replies 5
Last reply 2/16/2017 - 11:51am

I found this the other day during my research on WBRT.

Long-term stabilization of leptomeningeal disease with whole-brain radiation therapy in a patient with metastatic melanoma treated with vemurafenib: a case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880202/

 

Adriana got to come home yesterday and has been managing pain relatively well. Day 4 of lumbar and WBRT coming up. Boy that mask doesn't look fun but only about three minutes of treatment duration. The worst part was making it and targeting which took considerable time. She wished she had accepted the drugs in hindsight. She is awesome always with a smile on her face even though she has to put up with me. 

Need to get a new bed for her and new chair as ours are not comfortable for her. Occupational therapy discussed the potential for a hospital bed at home but she was discharged before they could arrange it. 

Any info on hospital bed rentals and specifically Medicare/Medicaid coverage would be appreciated.

 

Rob

 

Adriana

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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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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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JustJaren's picture
Replies 4
Last reply 2/16/2017 - 9:03am
Replies by: debwray, JustJaren

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

 

Thanks in advance!

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Cathy M's picture
Replies 22
Last reply 2/16/2017 - 4:55am

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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laulamb's picture
Replies 6
Last reply 2/16/2017 - 4:31am
Replies by: Anonymous, youngann, laulamb, jennunicorn, UBContributor

No abnormal focal nonphysiologic FDG uptake seen to suggest mestastic disease.

YAY!!  Thanks for everyone's good thoughts and prayers.

There was nothing on the PET scan report that discussed the 4 mm lung nodule.  So I am guessing it was still 4 mm and not able to be seen by the PET Scan or it was gone.  Does anyone have an insight on this? 

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jennunicorn's picture
Replies 12
Last reply 2/15/2017 - 5:52pm

So, my primary care doc had me do some regular blood tests last week, one of which was Vitamin D level. I have been curious since my melanoma madness began over a year ago what my level was, but was one of those things I kept forgetting to ask my onc to test for me.

Well, it's super low at 13. Not really surprised that it is low, but was hoping for a little better of a number. My doc wants me to start on a prescription Vitamin D 2 at 50000 iU. I sent a message to my onc to make sure that will be ok to take while on treatment before I start it. My primary wants me to take it for 2 months then retest me and I guess go from there.

Has anyone else been on a prescription Vit D before? I didn't even know it was a thing until now.

Of course having read (on awesome Celeste's blog) that low Vit D levels in mel patients is associated with poorer outcomes.. I want my levels wayyy up! I guess my orange juice w/ vit D and almond milk w/ vit D just isn't doin it. On top of this my cholesterol tests were a little high.... ugh, can't I just eat cheeseburgers, drink wine, and not exercise without having my cholesterol affected?? No? Dang it! Time to dust off the treadmill..

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Abbygx2589's picture
Replies 7
Last reply 2/15/2017 - 3:46pm

Hi everyone,

This is my first time posting but I read the boards here all the time. Thank you to every one who posts and supports each other. I am writing about my father who was diagnosed as stage IV last March (2016) after being diagnosed with stage 2 melanoma 17 years prior. We discovered it through a chest x-ray last winter , after his doctors had ignored his subcutaneous lumps for about a year, calling them lipomas. After all of the intial scans, we found out he had spots in his muscles, lung, pancreas, and multiple spots in the brain. He underwent cyberknife and began the ipi/nivo combo last spring in a clinical trial at BIMDC in Boston. He has shown response which is great and we are so thankful for- a 33% reduction in tumor size across the board- including the brain. After his last combo in July he became very sick and discovered he his pituitary had stopped producing cortisol so he now takes a low dose daily to make up for this. It is hard to believe he has stage IV cancer with how active and normal he seems. Anyway, finally, the reason I am writing is because his last scans were stable, the tumors did not shrink. This is the first time that nothing has shrunk. Has anyone had experience like this?  I am so afraid that the next scans will show growth. Have others experienced regrowth after shrinkage has turned to stability?

Thank you all so much

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