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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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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Lizz's picture
Replies 5
Last reply 10/19/2016 - 5:19am

HI can anyone recommend a melanoma oncologist specialist. Diagnosed recently, sentinel lymph node biospy and wide local excision on my arm last week.  I am now awaiting my results of the sentinel which will be available in 2-3 weeks.  I live in England.  Thank you. 

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triciaches's picture
Replies 1
Last reply 10/18/2016 - 8:54pm
Replies by: Anonymous

First melanoma occurance (left shoulder) was in 2009, second was in September 2013.  I am currently classified as T2a NO MO.  I've had several lesions removed, but the most recent biopsy results have me confused.... if anyone can break these down for me, I'd appreciate it.  :)

First Results:


Lentiginous junctional nevus with mild cytologic atypia, approximating lateral margin.  (See Narrative)

Narrative:  The biopsy specimen is significant for an asymmetric proliferation of mildly atypical appearing melanocytes along the dermal-epidermal junction.  These melanocytes are arranged in nests and also proliferate as single cells at the tips and sides of the rete ridges with associated papillary dermal fibroplasia.

Second Results:


Junctional letiginous nevus with architectural disorder and focally moderate cytologic atypia present at one transverse margin.  (See Narrative)

Narrative:  There is letiginous downgrowth of the epidermis populated by single melanocytes and some melanocytic nests at the dermal-epidermal junction and in the dermis.  The melanocytes reside mainly at the sides and tips of the rete ridges with sparing of the suprapapillary plates.  Bridging of melanocytic nests is identified.   No confluence of melanocytes at the juction or pagetoid spread is noted.  The melanocytes exhibit focally moderate cytologic atypia with nuclear enlargement, hyperchromtc and agulated nuclei and prominent nucleoli.  Beneath the epidermis is a zone of concentric dermal fibroplasia.  No dermal component is identified.  The lesion is present at one transverse margin, and recurrence is possible.  


Tricia Chappell - Chesapeake, VA

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SOLE's picture
Replies 8
Last reply 10/18/2016 - 5:20pm
Replies by: SOLE, Anonymous, Joycem, debwray, jennunicorn

Hello all

Here is a brief summary of my situation

T3bN1aM0 (as of august for pet and CT and sept. for WLE and SLN)

Primary on plantar of the foot: Breslow 2.85 (at least), Clark 4, Ulcerated (bled for a month before removal), mitoses 4mm2, vertical growth phase, lymphovascular or perineural or microsatellitosis absent, TILs present non brisk.

WLE: ALL margins clear despite a small 5mm portion missing of tissue because of toes that were saved. Breslow 1.47, no ulceration, mitoses 0mm2, lymphovascular or perineral absent. Microsatellitosis: no clear evidence, TILs absent.

One sentinel node out of three; found ´rare isolated cells' only. Onco surgeon said no CLND necessary.

Here is my plan and I would like to have feedback from you.

I will be given up a new scan schedule and all but even if my first scans come up clear (which I think they will given my short history) here is what I would like to try as adjuvant therapy.

I should say that I think Ihave more chances than others the mel cells have traveled through my blood stream and not so much my lymph nodes.

I am 48 male and in good health, lost all my extra weight this summer through dieting (20lbs) plus another 15 lbs since then out of anxiety. Apetite is there when moral is good and now I am taking more and more ownership of what's happened. I have no intention of letting this disease win over me. Have a beautiful soon to be 14 years old daughter and a very special girlfriend by my side. Work seems to resume for me (am self employed), phone rings and I have Life saying to me: are you going to continue living or what? Hell yes!

Here is my plan. Interferon: no. Ipi alone: no I dont see much advantages of doing this alone since only 20% respond to that drug. So I am looking at the combo ipi+nivo. I know its not standard of care and that it has its share of side effects but listen, if I progressed to Stage 4, I would be offered that combo so why not be pro-active instead? If I'm not mistaken, there is about a 50% response rate which is the highest rate out there.

That is my thinking. I dont have anything to report about lumps or secondary mel or lesions on my skin despite the huge amount of nevi I have. About inside my body I guess my first scan will show what the situation is. I think it will be negative.

In other words, I plan to remain stage 3 for the rest of my life or until they find a cure in about ten years from now.

Toughts on my plan? Sode effects to expect and for how long? Maintenance doses or not?

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Surf Rower's picture
Replies 4
Last reply 10/18/2016 - 4:50pm

I am Stage 1A and preparing for a larger re-excision on my upper arm (with general anesthesia) since the first one didn't get it all. I am seeing a surgical oncologist now for the second one. He mentioned he was going to have the slide reviewed from the first excision, because it might not really be necessary. Preparing to call him back to check on this, I want to know what to ask.  The path report said Melan-A and CD68 were used but in some light googling I found (old) articles saying those were not the best markers, as they also show up in benign nevi. (My dermatologist was "surprised" that his biopsy came back melanoma, as the lesion was a pink/red small bump.) What do you think, and what should I be asking the oncologist, later today when he might call back.  Thank you!

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Anonymous's picture
Replies 3
Last reply 10/18/2016 - 1:29pm
Replies by: casneek, Anonymous

we DO understand all treatment options out there and have been through most of the approved newer ones. Were are curently looking at intratumoral injections of il-2 . So far we can not find anyone curently doing this. They have done this at Huntsman combined with yervoy but not now. I think they are doing it now but not in the US. So if anyone has run across intratumoral injects of il-2 or combined with yervoy or keytruda / opivido let me know. If you get a chance ask around AND THANK YOU IN ADVANCE.

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Dear friends,

We are looking for one patient (advanced stage) and one caregiver in the Dallas, TX area who are interested in participating in a usability study for a pharmaceutical website. These are similar to focus groups, but they are one-on-one. The goal of the research is to make a more user-friendly website for patients and caregivers. Participants will be paid $100 immediately following their sesion. Sessions will take place in the Las Colinas area on November 8-10, but those interested participants who qualify will only need to attend one 75-minute session on one day. 

If you are interested in this opportunity, please send me an email at Thank you for your help!


Shelby - MRF

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