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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SOLE's picture
Replies 10
Last reply 10/16/2016 - 10:46pm
Replies by: Linny, snow white, SOLE, Anonymous, SABKLYN

My voice is becoming somehow extinct in the last 3 days. This began with, I think, intermittent very mild ear pain 6 weeks ago. I had maybe 6 times that little pain in the left ear. Also for the past 5 nights, when I go to sleep, I experience mild night sweats.

And just now, I've had like an inside flaming of the thorax that went to my throat.

Anyone has had those kinds of things?

Am scheduled to see oncologist for the first time on Monday and am currently staged 3.

Have I progressed to 4 already? My WLE and node results came in 2 weeks ago...


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BrianP's picture
Replies 2
Last reply 10/14/2016 - 10:04pm
Replies by: Polymath, stotesbery

A minute and a half explanation of how Anti-PD1 and IDO work together.

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Anonymous's picture
Replies 4
Last reply 10/15/2016 - 5:17pm
Replies by: Jules, Ed Williams, Polymath

Hello Everyone,

My father has stage IV melanoma as of his recent pet scan results. He has the BRAFV600K mutation

Some history for reference:

13 years ago primary melanoma found on the neck/bottom of hairline- barber noticed the change. Confirmed as melanoma, Clark Level IV with a 1.2 mm penetration-no ulceration and clear margins-staged 2 after a WLE.  Sentinel node negative.  He has been diligent seeing his dermatologist every 6 months with no more reoccurrences, just some pre-cancerous moles here and there.

April of 2016 he had a palpable super-clavicular lymph node that popped out of nowhere, they removed the node and it came back positive for melanoma taking over almost the entire node.  A few weeks later he had a neck discussion with 10 nodes taken out, the node under the one infected with melanoma had a microscopic amount of cancer cells the rest were clear.  Staged IIIB and started yervoy.  Started the 3kg dose for the first 3 doses and up titrated to 10 kg for his fourth dose which was almost a month ago.

End of September he noticed two sub q nodules pop up around the incision area where he had the neck dissection, within a week those two turned into 4.  I was under the impression that they took all the lymph nodes out but the pet scan and oncologist confirmed they were nodes.  pet scan also showed avid scattered enlarged lymph nodes on both the left side (where he had the surgery and primary) and one now on the right side, confirmed a stage 4 diagnosis.

I was thinking that he had a localized in transit metastases but now it looks like it’s still in his lymph nodes, which one comes with a better prognosis?

He sees a melanoma specialist and has an appointment next week to go over the results and change therapies-

I am in the medical field and have spent years (especially this year) researching and trying to keep myself informed on all the latest treatment options available and it seems like the trickiest thing is to figure out the right sequencing of medications to ensure the best response- with the new data that shows yervoy BEFORE opdivo can drop the response rate of Opdivo in half, i feel like radiation and adding Opdivo to the yervoy he has been taking is his best bet right now.  I know he can take the Taf/Mek combo but I like that as a back up as response rates for immunotherapy isn’t as high and if he doesn’t respond than he can at least fall back on those. 

Sorry for the novel, just wanted to get some insight from all you brave warriors of this disease.  I have learned so much from this board and I thank each and every one of you for sharing your stories, you have no idea how many lives you may have changed.



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Anonymous's picture
Replies 0

Quick query...was on ipi/nivo 2 yrs (last infusion 12.2015) and up to last scan, remain NED...had low tumor burdent with nodules in lungs only...scans every 3 months (last 8.22.16)...did experience hypophysitis/adrenal insufficiency after ipi portion completed so on pred every day...blood work showed expected increase in %neuts; WBC has been high normal; as has Calcium; total protein...HOWEVER, since last scan and blood work, my neut % is way back down to pre-treatment/steroid levels; CA and total protein are low, WBC is back to pre-treatment, low levels; eosinophils really elevated for me, to 4 (had run .3 thereabouts for 2 yrs)...waiting for 'answers' but has anyone else experienced fairly significant changes in some of these areas?

Thank you so much...


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stotesbery's picture
Replies 5
Last reply 10/14/2016 - 6:16pm
Replies by: stotesbery, Bubbles, debwray


i have had my BRAF status tested twice since January 2016 and it has come back negative both times.  One of my Oncologists recently ordered genomic testing when I progressed from stage lllC to stage IV (had a subcutaneous nodule removed and found to be melanoma).  The testing results (the subcutaneous nodule was the tumor that was tested) came back with  a BRAF V600D mutation but for only 20% of the cells.  Has anyone ever heard of this mutation or had a a similar type of result with only some of the cells being positive?  Any info would be appreciated!  I am currently on Opdivo and have had my third infusion but I swear the tumor (that I still have on my right butt muscle) is growing as it feels inflamed and painful which it did not before.  I just feel like nothing is working but I am so determined to beat this.  I just keep searching for the next thing to try.  I have already progressed while taking ipi at the 3mg dose and if Opdivo does not work either does it make any sense to try the combo?  I guess that is a lot of questions but trying to think of my options.  Thank you!

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Woodrow's picture
Replies 4
Last reply 10/14/2016 - 5:33pm
Replies by: Anonymous, Woodrow, debwray

My husband was diagnosed w stage 1 melanoma this week. His derm called and set him w a surgeon in the same town the dr lives in (90 miles away). We have a cancer center we could go to in St Louis (150 miles away). My question is should we go to a regular surgeon or to Siteman Cancer Center? The melanoma is located on his abdomen and requires general anesthesia and possibly sentinel node biopsy. Am I being too paranoid about this.  

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Alce123's picture
Replies 3
Last reply 10/14/2016 - 4:06pm
Replies by: Alce123, ldub, debwray

I had a stage 1a melanoma removed in 07/2016. I have had follow up appointments with my surgeon (a few too many due to graft failure and what he believes to be some sort of hypersensitivity reaction... but that's another story) and a skin check complete with full body photography. However, no one has checked my lymph nodes.

Checking them myself makes me super anxious plus... someone should be doing this, right?

So, who checks your lymph nodes? Pcp? Dermatologist? I just watched to make sure I'm following up appropriately.

Thank you!


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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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snow white's picture
Replies 13
Last reply 10/15/2016 - 11:57am

Well, Dad ended up having to have surgery this morning.  The 3 larger tumors didn't respond to Gamma Knife, they started bleeding and getting bigger.  One of the tumors was the size of a dime, but the Hemorrage (sp?) ended up being the size of a Lime and they believe this was causing all of the mobility issues.  The Doctor said that the surgery went well, they were able to get them all out, although it was a challenge.  He feels that he will regain his mobiity and that we probably should have had them removed from the beginning, but that it was good to give the Gamma Knife a go.  Dad is stable and resting in the ICU.  

Hoping tomorrow is a better day.



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jennunicorn's picture
Replies 23
Last reply 10/15/2016 - 6:37pm

I just got home from meeting with my oncologist to discuss what my options are now that the melanoma is back in my groin... and she still feels very likely that the armpit has some hiding there and the biopsy was probably false negative. We will scan again a little sooner than usual to check on that lymph node, if it shows larger, then we can clinically say it's metastatic and I'll be in the stage 4 boat. For now, I am in the stage 3C unresectable boat.

She laid out all of the treatment options. My BRAF test wasn't back yet, but she still laid out the targeted therapies as well. There are no trials open currently, there were a couple she mentioned that will be opening in one to two months. One trial that is open now is for NRAS positive patients, and she's having that tested too, just so we have all info we need.

My deciding factor was to know that if I went with an FDA approved treatment now, would that hinder me from getting into a trial in the future if I need to. She said that the new trials coming out, and many more in the future, will allow patients who have been previously treated with PD-1 drugs, whereas it has been that a lot of trials want PD-1 naive patients only. But, of course as we know, there are still a good chunk of people that try PD-1 drugs and it fails and they have to look somewhere for something new to try, so it makes sense that they will now be allowing those patients to join trials.

With that info, I decided trying the Ipi/Nivo combo is the best bet, and my oncologist agreed that would be the one she'd choose for me as well. Since I had no major adverse reactions to Ipi, hopefully it stays that way for the 4 infusions that include Ipi. Should be starting in a couple of weeks.

I do have a brain MRI scheduled tomorrow morning, just to make sure things upstairs still look good. If not, there is a trail open for brain met patients... but hopefully I don't need to consider that.

It's coming up on my one year cancerversary and I am so incredibly thankful to everyone on here for their knowledge and support. The veterans, the newbies, the caregivers, you all rock, keep being awesome!



Jenn -  IIIC

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Anonymous's picture
Replies 1
Last reply 10/14/2016 - 5:24am
Replies by: Anonymous

Previous Stage 1 Mel was removed nearly 1 year ago.

I noticed an eclipse-like nevus appear on my forehead around 5-6 months back. I first brought it to my Dr's attention 3 months ago (at my 3 monthly check).. He didn't like it then, though we took the wait and see approach. 

Size is quite small, though edges are very patchy, one very dark spot and a white circle for centre.

Went back this week for my check and the mole is to be removed next week as my Dr doesn't want to risk it.

I can't find many photos online, the only thing it appears to resemble may be an Eclipse Nevus.. Although they seem to be common only in children? Does anyone know if these are common amongst adults too, or if they seldom become malignant etc?

Dr's words were "looks like there may be melanocytic activity" - Perhaps that just means there looks like something is changing in it.

Any info would be appreciated!

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Scooby123's picture
Replies 6
Last reply 10/15/2016 - 2:54am
Replies by: Scooby123, Bubbles, BrianP, JoshF

Hi guys not been on for a while due to my mum passing and having to sort out things.
I went for my 3 month check today and was also expecting consultant to book 3 month scans as they are due. I have had a back issue which is causing me pain in both legs. I do suffer from back issues but this id not settling down. When i went today i explained about my back which they are going to do MRI to check. I was very concerned when they said for me to have brain scan and body scan in anothet 3 months time. That would be 6 months not 3 month scan. I had a tumour in brain had treatment last scan showed shrunk and liver lungs stable. I am worried that leaving me another 3 months is too long to check things still ok.
Do any of you guys have 6 month scans with liver lungs and brain activity.

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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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Jango's picture
Replies 7
Last reply 10/15/2016 - 11:46am

Hi everyone, I posted a few days ago because a mass was found in my dads abdomen and he was awaiting a ct scan to tell us more. Yesterday they told us that he has a mass in his abdomen as well as othe spots of cancer in abdomen and a few on his lungs. It has not been biopsied, but is probably melanoma as he had stage 1 mole removed from the same area a few years ago. M biggest fear and concern right now is that he is hospitalized due to overwhelming weakness and loss of appetite. He is fading before my eyes and we are still waiting to be seen by an oncologist. We also live in Ottawa as I noticed a few of you do too. Any advice would be most welcome. This came on so quick. A few weeks ago my dad was strong and robust with an appetite. Please let me know if you have suggestions !

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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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