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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Hollybmeuc's picture
Replies 16
Last reply 7/1/2017 - 8:06pm

    Hi. I had a mole on my arm that had a small growth on it for about 3 to 4 months and after biopsy found out it's melanoma 1.9 ml thick . I had sentinel node biopsy and 3 of 5 lymph nodes had microscopic cancer cells. 2 day ago I had a complete auxiliary lymph node dissection. 3 surgerys this month . I'm diagnosed as stage 3a. I have to wait for biopsy to determine treatment with oncologist. I'm scared and not sure at all of what to expect next. Anyone have similar case that may be able to give me an idea of what may or may not happen?  Thanks 

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/30/2017 - 2:08pm
Replies by: Cindyco

Trying to find a female who has same diagnosis as myself to share their journey with me and gather insight into what to do next. Thank you.

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CindyJ's picture
Replies 2
Last reply 6/30/2017 - 2:27pm
Replies by: CindyJ, Anonymous

We saw the Onc yesterday, and even though my mom's first PET was only eight weeks after her start of Pembro, he convinced us to stop and got us in a trial for Palbociclib, starting in two weeks. Her initial tumor had grown slightly and he believes the nod in her lung is a met. I'm not convinced Pembro wasn't working but also know with her low tumor burden a target therapy should have a better chance, and the Pembro is still in her system.

Palbociclib is a breast cancer treatment. My mom is postituve for the CCNDI mutation. I searched on this forum and found that at least a couple people have been on this. Can these people or anyone else share if it worked or how the side effects were?  Thank you!!!

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jwarren39837's picture
Replies 3
Last reply 6/30/2017 - 6:06pm

My history with skin cancer began in 2012 when I had a basal cell carcinoma removed from my forehead.  Since then I’ve had a few suspicious looking spots frozen but nothing to cause any real concern…until… In, I would guess early 2017, I noticed for the first time that a place on the top/back of my left ear had peeled for no apparent reason.  To see this place I had to literally fold my ear over.  I didn’t really have a baseline to go by with respect to changes as I have never consciously examined this part of my body before and thus didn’t know what it looked like before.  I dismissed the first couple of peeling cycles and went merrily on my way.  However, as the months went by it continued going through peeling cycles and I knew this couldn’t be right.  So in May 2017 the spot was biopsied and diagnosed superficial spreading melanoma at stage 1b with 0.78 mm thickness, ulceration (probably all the damn peeling right!), and 2 mitoses per square mm.  There was no evidence of invasion into lymphatic/nervous/circulatory systems.  The strangest (and scariest thing, I think) was that there was no associated hyperpigmented area.  Other than the incessant peeling, the area visually looked fairly normal. Nevertheless, it was melanoma, so let’s get it out!  I had a 1.8 X 1.4 X 0.9 cm wedge removed and the pathology report returned stating the tumor was excised, but the nearest margin was 5 mm - too close.  As of this writing, I have completed the second surgery to obtain wider margins and the pathology report has returned all clear.  My dermatologist, oncologist, and plastic surgeon all are on the fence about whether a lymph node biopsy is merited.  Since my diagnosis I have learned that a lymph node biopsy is best done before excision anyway so I don’t know what to do at this point other than I have arranged for Mayo Clinic in Jacksonville, FL to take over my case going forward. I am incredibly gratefully for the doctors who have worked with me thus far but feel like it’s wise to align with a melanoma specialist for the future.  My first appointment is in mid-July.  I know this is a journey, and I'll be sporting an ear that’s about 2/3 its former size as a reminder of the saga.  But I'm optimistic and hoping for the best.  I know many of you here have much greater challenges than I, but I wanted to give a big thank you to all the forum users.  I have found the stories and information here to be enormously helpful.  I wish you all the best and let’s keep each other strong!

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kpcollins31's picture
Replies 10
Last reply 7/3/2017 - 5:49am

We have lost some good ones recently and over the years to this terrible disease, but there is hope out there. This past Monday, I reached 3.5 years NED after another round of clear scans. That initial stage IV diagnosis seemed bleak at the time and I wondered what the future held as a large tumor was cut from my intestine right before my 40th birthday. Each clear scan after that surgery resulted in hope... at first small, but growing each time. I have been blessed so far as to not require treatment beyond surgery.

So now I live my life the best I can and do not spend much time on this board. I do remember what it was like searching for answers on this board and hearing the occasional good news from long term survivors and it raised my spirits. So here I am to share that news - no matter how bleak it seems, NED may be right around the corner after that next surgery or that next treatment. All we can do is take one step at a time and hope for the best. Keep fighting! 

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Hey all,

I have excellent news of my sister Leisa! A year after WBR for "too many brain mets to count," her brain has finally been declared "clear." We had a verbal 2 weeks ago from a nurse who said over the phone "no mets" but all reports since last Nov. showed existing mets had resolved - we were ecstatic at the time but the docs refused to share our optimism. Now I understand why - they were still seeing a couple of small T1 flairs and numerous T2 flairs. I did not realize the difference until we saw the radioncologist last week - T1 is suspect for pathology (disease) and T2 could be anything >> seems so simple and I'll be damned as to why I couldn't get a straight answer on this before (part of my confusion was because they insist on calling T1 flairs "new mets" and when we read the reports we were asking "what new mets are you talking about?")

Anyway, it's now official and we are "over the top." The T2 flairs they see now are numerous and throughout the white matter but they are the damage from the WBR. These are very similar (as I understand it) to declines in our brains that are seen as we age, after having a stroke or with alzheimers. Not much that can be done and she is coping now with short term memory probems. 

I also posted the other week about her treatment because the trial she was in was ending and we were kind of alarmed because she is not NED. I did update that post to say we'd had a call that they were going to continue nivo for her but we didn't know what "the plan" was until yesterday. Seems there actually is no plan or the onc wants to see the next thoracic scan (July 10) before she says anything more. She did volunteer that if the next scan showed NED, she'd continue infusions for another 3 mos. but if not NED, she'd go one more year on nivo, tops!! She also confirmed that the nivo is just by regular prescribed treatment, it's not under trial. That's progress here because 6 mos. ago it wasn't available this way AND, for the life of me, why couldn't she tell us this 4 weeks ago. We think she was waiting to see the brain scan before saying anything.

Small rant >> I am extremely grateful for the universal healthcare we have here - my sister would not be alive now without it. But I find the lack of info startling - we rarely get questions answered and most of the time the onc is just too busy to entertain qs anyway. They're also very reluctant to be enthused over good news (e.g., the only organs the onc will say are clear for my sister are her lungs and now the brain - she won't comment on the spine, the pancreas or anywhere else they are no longer seeing anything). We've asked repeatedly about certain bloodwork, LDH level in particular, and were usually kind of dissed - this time she must've been prepared because she had the LDH - it's back in normal range, 254. Before treatment last year it approached 1200. From the outset though, the onc told my sister to stay "offline" - she does not like her patients to be informed, that's clear (that's why I'm on here and my sister is not). But I stlll don't understand - why keep peole in the dark? I've stated this before and I'll say it again - this board has been our lifeline, the bulk of serious answers we've had came from here. In fact, we believe it saved her life (a post in May about sudden tinnitus clued us in to brain mets - that answer was from Jennunicorn - Jenn, if you happen to read this, please know that my sister regards you as a "hidden angel" - so do I!!)

So, that's where we're at - feeling close to NED but 4 or 5 tumours to go still. We'll knock them off one by one if we have to :)

Thanks for listening, thanks very much for being here!!

Best to all,

Barb

 

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Anonymous's picture
Anonymous
Replies 0

Currently being treated for the second onset of uveitis. Noticed pronounced swelling under one eye. Any one else experience this? 

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Matt3127's picture
Replies 15
Last reply 7/1/2017 - 8:30pm

Hello all,

My name is Matt. I'm a 37 year old male, stage 3a, currently waiting for acceptance into a clinical trial. I was just curious to hear anyone's experience with lymphedema after having lymph nodes removed. I will be getting my second wide excision surgery in as many years and my oncologist recommend removing all the lymph nodes in my left arm. I have seen pictures of lymphedema and, am very nervous. I'm left handed and not having normal use of that arm is very worrisome. Any information would be greatly appreciated. 

Thanks,

Matt

Matthew McC.

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RitysMom's picture
Replies 5
Last reply 6/28/2017 - 9:02pm

First off, I already know what an amazing family I have, but this trip to Hawaii just reinforced it. We had a group of 13 in the house we rented...obviously myself and my hubby and Kristine and her hubby...our 33 yr old daughter with her husband, 18 yr old stepson, and our 1 yr old grand baby; 25 yr old daughter with fiancé; 20 yr old son with girlfriend; and my sister. When Kristine was feeling her worst on Friday night, my husband and I were upstairs having a private conversation with her husband about her care once they returned to AL while everyone else was downstairs watching a movie. Kristine began to vomit. She told me later that she warned everyone and that her three siblings immediately ran to her side to help her. They never even ran upstairs to tell us, they just handled it. I was not surprised, but it obviously spoke volumes to her.

After increasing dex to 8mg/day on Saturday, Kristine was feeling much better. She was able to attend a luau on Saturday night and spent Sunday with us at the beach (under a large shade tree). We rented a beach wheelchair in case she wanted to go down to the sand or in the water, but she wasn't up to that. 

On Monday night, she asked if she and her husband could talk to us. They had decided to take us up on our offer for them to move back home to California. We were thrilled! We know this won't be easy, but we are committed to making life as easy as possible for her and our son-in-law. They are giving up a life and a home they've spent 8 years building to move in with Mom & Dad and two siblings...it will understandably be a big adjustment. 

We had a family meeting right after and announced that she was coming home. Everyone was moved to tears and agreed to work together to make sure she was always cared for. We are talking about renovating the downstairs bathroom, turning the formal living & dining room into 'their' space, and my youngest daughter is moving from her room downstairs to the guest room upstairs. The biggest obstacle for us will be the addition of their pets. We already have 5 dogs and 2 cats. They have 2 cats and 2 dogs. We'll work it out tho.

I know this doesn't change that we are still dealing with this hideous disease, but having my baby girl home is just what this momma's heart needed!

Cindy 

Mom of the beautiful Kristine

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Maureen038's picture
Replies 12
Last reply 7/1/2017 - 2:04pm

Bill had liver surgery yesterday and the liver met was NOT cancer!!! His liver has taken a beating with the her-2 chemo drug and it's degenerative tissue. Unfortunately, they had to do regular surgery and they removed his gall bladder too. I don't know if they will just have him take a break from the drug or he won't be able to take it anymore. What matters right now is being so grateful that it wasn't cancer!! As all of you know it's one day at a time.

Wishing all of you the best especially Brian P and Jake. You are both in my prayers so much!!

Maureen

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bcbcbc55's picture
Replies 6
Last reply 7/1/2017 - 8:13am
Replies by: bcbcbc55, Toby0987, vivian, Anonymous

After stopping YERVOY treatments at 4 due to side effects of neuropathy  , numbness in feet and legs, I'm being advised RADIATION is a possible treatment.

Has anyone had RADIATION treatments??????  thank you

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/3/2017 - 1:32pm

I'm a fairly young stage 4 patient with what might have been called a "promising career ahead of me" (lol) before being diagnosed. I'm still clinging to being able to have a complete response and getting back to a normal life and career. Is setting up a gofundme (and having tens or hundreds of people share it) likely to mean that future employers, etc. will be able to see a lot about my melanoma journey? Should I treat this as a "cat is out of the bag" thing and just go forward with it anyways? I understand there's no right answer here, but hearing some of your thoughts would help me weigh the costs and benefits. I know employers arent technically supposed to consider this sort of thing, but its pretty hard not to (subconsciously at least) if theyre aware.  

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cammeronwall's picture
Replies 9
Last reply 6/30/2017 - 6:34pm

Hi, 

i pray everyone is doing very well. I'm having my melanoma removed this Friday. (WLE) along with the sentinel node biopsy and skin graft. The surgeon said the melanoma is quite deep. 3.15mm+.... how painful is recovery? The melanoma is on my right temple. They're using the standard 2cm perimeter so I was advised there is a small possibility of nerve damage. Skin will be taken from behind my ear or near bottom of my neck. All MRI/PET scans were clear so I assume the node biopsy should be negative?? 

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slholmdahl's picture
Replies 8
Last reply 6/28/2017 - 6:58pm
Replies by: slholmdahl, Anonymous, miaka618, betsyl

was diagnosed with stage 1a melanoma about one year ago.  It was 0.2MM thick and I had a mitotic rate of zero.   It was on my upper arm. A WLE was performed and all margins were clear.  Also, no other melanoma cells were found even at the original site.  Is the non-finding of any cells in the WLE unusual?

I have consulted with two dermatologists concerning melanoma.

The first states all the usual warnings regarding melanoma, caused by radiation exposure, etc.

Second doctor with more of a research orientation, he is on the faculty at Stanford, believes UVA/UVB has little to do with the development of melanoma.  He says  he believes it is all caused by some genetic weakness or predisposition towards it and not UVA/UVB radiation or sunburns.

I have medium toned skin, blonde hair and green hazel eyes.  I tan and do not burn.

Who do I believe?

It is important to me because I have a genetic skin disease called psoriasis.  The easiest, and most effective way to treat it is using narrow band spectrum UVB light.  Very narrow spectrum and I can control it with an exposure of three minutes once weekly.

One doctor says no more light treatments, the Stanford doctor says no reason I can't continue with home narrow band UVB treatments.  Other treatments are systemic drugs, with many side effects and cause minimal suppression of the immune system.

Any comments are appreciated.

Final issue, can anyone provide studies or statistics on skin checks?  One doctor says every six months, other says once a year, first two years, and subsequently only if you see something new or bothersome.  Second doctor works with a lot more melanoma patients than the first.

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/29/2017 - 9:45pm
Replies by: Sharon93065, Anonymous

 

I think I have a swollen lymph node in my right flank. I have. History of st 3 melanoma originating on right calf resulting in right groin and iliac lympadenectomies

 

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