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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Anonymous's picture
Replies 3
Last reply 10/21/2016 - 10:47am

My elderly father was diagnosed with Stage IIB melanoma last October which was treated with a wide excision and removal of 4 lymph nodes around his arm/underarm.  We were told by the surgeon that no trace of the cancer was found in any node or the margins and we were thrilled and no further treatment was ordered.

Unfortunately, fast forward a year later and it appears that he now has several mets to his lung (confirmed via biopsy last week) and, I suspect due to very recent vision changes, mets to his brain.  He is having an MRI of his brain today.  We'll be meeting with his oncologist for the first time on Monday. 

First, I can't believe how quickly this is happening.  Secondly, he is being treated at Memorial Sloan Cancer Center in NYC.  We loved his surgeon, but I'm a little disappointed that he was not assigned to Dr. Wolchok as, at least in my non-medical opinion, he seems to have a very advanced case.  We were told, however, that they wanted us to get the first available appointment, so I guess beggars can't be choosers. 

I'm reaching out partly for some moral support and partly because so many of you have been down this road and know a lot more than I do. 1) What kinds of questions should be asking his onc?  2) what are the possible treatment options? 3) We don't know his BRAF or other gene status yet, but is there a chance that a treatment could buy us some time? 4) Do you think we should waste time getting a second opinion or just go with whatever treatment is recommended by MSKCC.


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Anonymous's picture
Replies 9
Last reply 10/21/2016 - 10:26am

I am really in a bad way today and don't feel that I can come here- to a community of people who have the same cancer as I do- because I have been reading all of the posts (every day) as a way of trying to learn about melanoma and be supported, yet I have seem too much judgement and  chastising to feel comfortable  sharing.

Please those of you who have all the answers, be patient and kind to those of us who don't and who are just seeking a shoulder to lean on.

There aren't many places we can go.


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vickiaa0529's picture
Replies 11
Last reply 10/21/2016 - 1:18am

Is anyone doing watch and wait after having brain mets 

is not logistically going to work to get to MD Anderson in the next few weeks as my husband is retiring on Friday and we don't won't have a home city to fly out of. Our condo in Seattle got sold and we're in hotels. I was thinking I had two months to get started but my Oncologist said no and said she would suggest close monitoring 



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Replies by: Surf Rower, Anonymous, desertsun, Janner, CHRISNYC

Hello all, glad to have found this forum. Please forgive me for not yet knowing the right terms... I promise to study, but my second surgery is coming up soon and maybe someone has feedback for me on my questions. Two weeks ago I had very shallow 0.2mm melanoma removed from outside upper arm, in a wide excision, by a plastic surgeon I was referred to by my dermatologist. Good job 30 mins local anesthesia, not much pain, minimal scar visible on upper arm. Unfortunately the pathology on the excision indicated one lateral edge still has melanoma, so now there has to be a second, larger excision. I switched to a renowned cancer center in my region. The surgical oncologist there says the first surgeon didn't orient the sample so they don't know what side the residual cells are on (!!!!). It could even be a separate melanoma, so tiny it wasn't seen. In any case, he says he has to remove the entire scar area from the surgery two weeks ago, so it doesn't really matter and it will be pretty big. "Puckered" "divot" and "shark bite" were the not-reassuring words. Of course I am super happy this is only a Stage 1A; being high risk for this at age 62 with a life of sun, when I heard they had not gotten it all I had been very worried and working on my bucket list (more train travel). Here is my actual question, though any feedback on this situation is welcome.   - Does it sound like they need to use general anesthesia for this? He drew on my arm and the excision will be football shaped and about 2.5" long. He said they would have to pull on the skin a lot so they were going to use a "light" general. I don't mind the anesthesia, but it suggests that the surgery is kind of a big deal. The first one was so easy and the stitches were internal; these will be external. Thoughts? Have any of you chosen a plastic surgeon over a surgical oncologist for this size excision? I like both of the doctors. It seems better to be treated at a cancer center, regardless of the cosmetics afterwards, right?  Maybe they make it sound worse than it usually is so we are happy with the scar later. At least it is in a good spot for a tattoo.

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SOLE's picture
Replies 17
Last reply 10/20/2016 - 3:34pm

Hi everyone

I have come across conflicting evidence concerning sweats and melanoma.

So let me ask you this:

Do you experience day sweats and/or night sweats?

Under immunotherapy or not?

Are those severe sweats like lymphoma cancer patients?

Have you been able to link your sweats to recurrence or met apparitions or else?


I have had mild night sweats for the last two weeks and maybe a few times in september and I wonder if it is linked to the metabolic activity of melanoma

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Rkaiser's picture
Replies 5
Last reply 10/20/2016 - 12:37pm
Replies by: youngann, Rkaiser, jennunicorn, casagrayson, Anonymous

I recently took off my toenail polish and noticed a large brown spot on my right big toe and another only third toe on the left. I thought at first it must be bruises since they popped up so suddenly (the last time I took off my toenail polish was about 3 or 4 weeks ago) but after looking online I saw that hematomas can look a lot like melanomas under the nails.

I don't remember a specific traumatic event, but does the fact that they showed up so large within a month span and are on two different toes make it more likely a hematoma or melanoma? At what point in time if it's not healing do I consult a dermatologist? I just don't want to sit on this for months and possibly be missing something big. Does anyone have advice on this? Do melanomas under the toes generally show up gradually or can the really show up all of a sudden?

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youngann's picture
Replies 7
Last reply 10/20/2016 - 1:44am

I just had my 3rd dose of Ipi 3mg/kg and, so far, in addition to 5 days of constipation with each dose, I’ve had only mild nausea, itchiness and fatigue. However, since starting the Ipi, about 3 or 4 times a week, I’ve had a spell of vertigo when getting into bed at night. It’s only happening after I turn out the light and as my head hits the pillow. I have to force myself to stare at the alarm clock in order to stop the bed from tilting and trying to tip me onto the floor.

My thought is this is something totally unrelated to melanoma or Ipi but I was wondering if anyone else had experienced this dark vertigo thing while under treatment.


Home of the original "Crappy Shirt"

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Anonymous's picture
Replies 3
Last reply 10/20/2016 - 1:25am
Replies by: slouttit, landlover

I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

Does anyone have advice for these symptoms? 

My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

Any thoughts on next steps?






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Samroberts4's picture
Replies 6
Last reply 10/19/2016 - 11:54pm
Replies by: Samroberts4, Surf Rower, casagrayson, youngann, Anonymous

Hello all,

I was diagnosed with melonoma today, which the doctor termed "a particularly nasty one." I am going to the plastic surgeon on Monday (10/17/16) to see if he can remove the melonoma; they are also going to cut into the surrounding areas to see if it has spread.  The melonoma is on the side of my right bicep, and my primary-care physician looked at it several months ago but didn't think it was a grave concern. 

Today, my skin doctor said that she would pray for me, which freaked me out even more than hearing the diagnosis.  I am glad to join this support forum and will give you an update on further develoments, which I will post on Monday.  I am 48 years old and in good health, so I hope this bodes well for me in my fight against this awful form of cancer. 

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Anonymous's picture
Replies 8
Last reply 10/19/2016 - 10:03pm
Replies by: POW, WithinMySkin, BrianP, Janner, Anonymous

A friend of mine was just diagnosted with malignant melanoma Stage 0, which I think is "in situ", right? His doctor just took a punch biopsy and said no further treatment was necessary. Is a wide local excision (WLE) usually ordered for a Stage 0?

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vickiaa0529's picture
Replies 18
Last reply 10/19/2016 - 7:43pm

Hi it's Vicki

I had great news on my Scans the tiny lesion on my brain is gone and the larger one is turning into scar tissue. My CT scan was clear! My oncologist is suggesting high dose ipi due new data with higher overall survival rates. How many have gotten through all 4 doses without severe consequences? 

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Anonymous's picture
Replies 14
Last reply 10/19/2016 - 1:27pm
Replies by: Bubbles, williez, Anonymous, Polymath, Ed Williams, Hukill, Patrisa

Hello folks,

Crossed the stage IV bridge from watchful waiting . No previous treatment other than surgery.

Liver mets diffuse confirmed by MRI after CT scan.

Have been given two treatment choices 

ipi 3mg for four doses every 3 weeks same time as nivo 1mg

then nivo 3mg every 2 weeks

OR pembrolizumab 2mg every 3 weeks.

LDH normal

Don't know pd1 expression but trying to find out as was in placebo wing of previous trial in that info is held on file- just not sure I can get to it.

IPI / nivo requires brain MRI and would probably start a week later than keytruda..

Have background eczema and arthritis that would probably flare with ipi..

Wrestling with the fact that neither may work but that ipi /nivo has best chance but worst side effects. Know I'm lucky to have the choices but really unsure. Do I flip a coin ?

Any advice or wise counsel very welcome-  Would be easier if ipi dose was lower-

Thanks to all


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Hello Everyone,

Thank you to everyone who posted with information and advice before .

We got the results about a week ago from our oncologist in that my mom was BRAF+.

We were told based on his medical opinion that she should be put on Dabrafenib + Trametinib (Pills) 

He knew at this time my mom was barely able to swallow water and could not swallow food. He was unsure weather we could use the feeding tube to administer the treatment but was going to try and find out.

We never heard back and made many calls. 

After reading about that here on the forum and as much research as possible about this treatment. We thought at the speed my mom tumors are growing especially the one behind her upper GI tract that is also pushing on her lung and heart. that this would help things shrink the fastest. 

So after a week of calls and getting this treatment finally ordered, after back and forth with a few pharmacist trying to figure out if we can use the feeding tube for this. We still have no answer other then a call saying that one of the pills says it cant be crushed.

We see our oncologist tomorrow. 

Here is the question. Anyone know any story or information on this treatment for a patient that can't swallow and has sever dysphagia.

Any help or info would be greatly appreciated. I feel like time is crucial and cant wait weeks more to start a treatment.

Thank you


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Monroemichelle926's picture
Replies 13
Last reply 10/19/2016 - 11:05am
Replies by: AshleyS, Anonymous, Monroemichelle926, Joycem, Bubbles, Hukill

Hi everyone!

I guess I'm just here to connect and express my fears, and maybe learn some information I didn't know before.  I am a 33 year old female, and currently 24 weeks  pregnant with my second child.  I went in for a routine mole check a few weeks ago (it's been years since my last) and the doc recommended I get a Melafind scan due to some funny looking ones on my back she thought needed checking.
 I was scanned for 10, and out of those 10, one was dysplastic with a score of 2.1, and the other had a score of 3.4.  The doctor said the both need to come off, and that the one with the high score needs to be checked for malignancy.  He said it so casually that I didn't even think to ask any further questions before I left.  Is he saying I could have cancer?  Like, right now?  I guess it's not sinking in or something.  I feel fine.  My pregnancy is going great; no issues.  Good appetite and weight gain.  Baby is strong and growing perfectly.  It's a small, flat mole; no ulcerations or irritation.  Can I feel at ALL assured that if it IS malignant, it would be just a 0 or 1 stage?  I just feel like I'd feel sicker if it were more advanced then that. 
I know no one here is a doctor.  I hate when people ask for medical advice online, and here I am doing just that. Any thoughts would be welcomed...thank you in advance!

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JoshF's picture
Replies 13
Last reply 10/19/2016 - 10:38am


So I didn't know how to frame the subject up to reflect what Ireally want to ask people who have responded to treatments.

This is for those that had palpable lymph nodes or sub-q's....

How long until you noticed things shrinking once treatment started? Weeks....days??

Once things started shrinking how long did it take to resolve...go away?

So I have numerous sub-q's but I notice 1-2 of them are noticeably smaller while others haven't changed though I have aother that is sore...possible Tcell inflammation? It's been just over 3 weeks since Tcell infusion. They said give it time but I never had this experience before and don't know what to expect. I'm grateful that it appears my immune system is attempting to mount a response. Any experiences anyone can share would be great!!!

Be well all!


Let's work for better treatments....for a cure!!!!

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