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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Casitas1's picture
Replies 11
Last reply 12/30/2016 - 8:35am

Hey all, six month scans after becoming NED in July were all clear today! Been off treatment since Oct. Feeling great except for joint inflammation which i see a rheumatologist for on Fri. Happy New Year to all! And to all those battling the beast I think of you often and wish you well.


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casagrayson's picture
Replies 2
Last reply 12/30/2016 - 1:00am
Replies by: casagrayson, geriakt

Has anyone had an update from Juan or Stacey?

Strength and Courage,


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Hriggenbach's picture
Replies 3
Last reply 12/29/2016 - 9:17pm

I had snb and wle my dr just called saying one lymph node tested positive but the melanoma is encapsulated she scheduled my for Ct and MRI as well as surgery to remove the rest of the lymph nodes. Is it good it's in only one??

My original pathology report ...Ohio state university hasn't posted latest report yet 

Ulcerated invasive spitzoid malignant melanoma 

Breslow Depp at least 2.3 MM Clark's level IV
ulceration present
Focal angiolymphatic invasion present
No neurotrophic invasion present 
No microsatellitosis present 
There is a brisk host inflammatory response 
Note: The breslow depth maybe deeper than reported as the lesion is seen extending to the base of the biopsy specimen. The AJCC staging for this lesion is PT3B Pnx, stage IIB. The mart-1 strain efficiency highlights these meanocytes with the PHH3 highlighting Mitotic figures

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_Paul_'s picture
Replies 9
Last reply 12/29/2016 - 8:33pm

It has been quite the ride. Turns out my intestines were severely impacted with weeks of crap from the painkillers I had been receiving. And my pain was increasing until I ended up on Dilaudid drip. I could not eat for a few days because of excessive bloating and nausea Even trying to swallow oral meds made me heave.

Opiates bind with receptors in the intestines and everything stops. After trying several types of laxative, the one that got the ball rolling is an injection that prevents the opiates from binding to the receptors. Kinda like pathway inhibitors.

However at least it prepared me for the nausea to come from the high dose IL-2, starting tomorrow.

The TIL infusion gave me extreme shivers which required wrapping me in warm blankets like a South Park character, cranking the heat in the room, and 25ml of Demerol. This n spite of a yield of only 15 billion cells, ten times less than I hoped for.

My temperature spiked to 102, but all in all a walk in the park compared to the days of not eating and the from the extreme bloating. 

The last two days my appetite returned and I have been mercilessly cracking jokes with the nurses. Some make better victims than others. Heh, heh, heh.

Tomorrow is the main event. I will try and keep posting.

- Paul

To exist is beyond fantastic.

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sister of patient's picture
Replies 10
Last reply 12/29/2016 - 6:45pm

Just another quick update on my sister, Leisa.

Posted a few weeks back that latest thoracic CT showed tumour shrinkage everywhere and no new progression. Now we have a new brain MRI and the results are excellent - "There is no evidence of abnormal enhancement within the brain parenchyma, leptomeninges or pachymeningeal. The previously visualized enhancing lesions within the bilateral cerebral hemispheres have completely resolved (in the interval)." Yay!!!  This - after brain mets "too numerous to count" and WBR as the only option - is phenomenal. 

I am so grateful to the "gods that be," there just aren't any words to describe how I feel, particularly because six months ago, it was doubtful she'd make it this far and any chance of ever seeing NED seemed impossible (there are only two organs in her whole body that were clear - heart and colon).

I didn't want to even "dare to hope" but I sure am now. She still has a long way to go and is only approaching the halfway point of Nivo infusions (started on ipi/nivo combo but had only two infusions before the ipi attacked her retinas) but we have lots of reasons for believing that NED is in the future!

With much gratitude, wishing everyone on here the best possible outcomes and a hopeful, healthy 2017!!


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Kenkussions's picture
Replies 13
Last reply 12/29/2016 - 3:46pm
Replies by: Kenkussions, Anonymous, Michelle820, Janner, jennunicorn, debwray

Hello everyone,

I was just diagnosed (12/19/2016) with Melanoma In Situ on my neck. I have a family history of skin cancer (both my father and grandfather) however, I have found out that all of theirs came back as BCC or SCC not melanoma. I go in for a WLE on 12/27/2016 and am fairly nervous as I know I will be awake and the spot they are removing is right behind my ear (I feel like I will hear everything being cut/ cottarized. Apparently they will leave the wound open for 2 days for testing then if all clear margins I go back in Thursday 12/29/2016 to get sewn up/ more removed if not clear. Those two days do not sound very fun but after researching online and on this forum I realize I just have to get it done. I now know that the "in Situ" is the best possible diagnosis if melanoma is present but I am very fearful that there may be more on my body that we are not finding. Below is what the pathology report came back as any insights would be appreciated. I am just scarring myself reading all of these stories of how often melanoma tends to come back with a vengeance. 


Left occipital scalp-

Melanoma in Situ

Note: There are features of a dysplastic nevus as well. Pathologic stage: pTis.

Clinical Data:

Dysplastic Nevus


Gross Description:

Received in formalin labeled with patient's name is a tan shave biopsy measuring 7mm x 7mm x 1mm. Specimen submitted in 1 cassette, 2 pieces.

Microscopic Description:

There is a proliferation of atypical melanocytes present in the epidermis with irregular nests of melanocytes aggregated at the dermoepidermal juntion and solitary melanocytes present within the epidermis. The process is confined to the epidermis. These changes represent primary malignant melanoma in situ.

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Jubes's picture
Replies 6
Last reply 12/28/2016 - 11:32pm

Hi all

just wondering what kind of pain bone met pain feels like. I have lung and chest Mets and for weeks now have a sharp pain in my back when I breathe deeply ( and pain most of the time there. It's more like the shoulder blade area) not unbearable but so it hurts to turn over in bed. I mentioned it at my last one appt but it was a new dr and he said it was probably just muscle pain. I have had it now for at least 6 weeks and won't see the dr till may. So just panicking a bit. Could it be muscle soreness from the pembrolizumab I am  on?

btw really enjoying all the posts from Brian and Ed etc:)

tks anne-Louise 

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Anonymous's picture
Replies 8
Last reply 12/28/2016 - 11:20pm
Replies by: tag4128, arthurjedi007, Anonymous, Mat, RJoeyB, Janner

What does bone tumor pain actually feel like?

I have a history of melanoma with 1 recurrence in the past 2 years and have been having increasing pain in my right hipbone/pelvic area, sometimes it radiates slightly into my back, sometimes a bit down my right leg, but mostly it seems to be right at the hipbone.  It has been gradually increasing for a few months but has just gotten really bad the last few weeks, so that it went from occasional and more of a dull ache, to constant and sometimes almost unbearable, though it will reduce back down to a dull ache, but now it is always there. 

I am going in for a CT scan but I can't seem to find much on what bone pain from tumors might feel like.   Melanoma lesions can be small, so I am not sure how aggressive I should be in following this up if the CT doesn't show anything.  Should I ask for a PET CT?

Does this sound anything like bone tumor pain to any of you?

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Aloha14's picture
Replies 0

I had the groin ultrasound today to check on the lumps~I don't just have one seroma I have three! All this for removal of two lymph nodes. I see the surgeon in the morning to find out if the largest one can be drained. The smaller ones I could deal with. 

Plus, had my Pet Scan today and made it through without the Valium. The wrost part seemed like getting the saline and glucose stuff into my veins~I could smell and taste it. 

Hopefully, the stitches in my lower leg come out tomorrow. 

Thanks to all for the support


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Shaneswife's picture
Replies 5
Last reply 12/28/2016 - 8:33pm

With hubby's miliary spread of melanoma in both lungs and the brain, and multiple tumors in the liver, I'm very worried that there is no data out there to support a braf mek combo for this type of metastases. From my understanding, a miliary spread is extremely rare and having it in 3 organ sites has not been documented that could be found.

Miliary type spread has an exceedingly poor prognosis which worries me the most.

Hubby is showing more and more symptoms since radiation stopped. Jumbled words, anger, tremors when trying to do anything that requires fine motor skills, cramping all over his body randomly.

We see the oncologist Wednesday and I have my list of questions ready.

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Aloha14's picture
Replies 7
Last reply 12/28/2016 - 4:57pm

The lump from the one lymph node removal is getting bigger and harder and seems about the size of a tennis ball. It's very painful and feels like it's ripping out my muscle or ligament in the inside of my upper leg. Do these usually get hard and feel solid? I have an app't at the surgeon's office on Thursday but I'm wondering if I should call sooner. 

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Anonymous's picture
Replies 2
Last reply 12/28/2016 - 1:50pm

My daughter has had a scabbed over blister for a few months. I've had stage 1a melanoma myself so I of course worry about these things. We took her to the dr while back and he said the blister healed over and it would pop and ooze. It did this and now it's kind of dried over. It is smaller and doesn't bother her. I've actually had another dr look at when we had a cold apt. They told me the same thing that it was getting callused over and it was just take time to continue to go away. I feel like I'm being a little crazy but the Internet can do that. She won't let me touch it and I don't won't to pick it off. I know the signs for modular melanoma and this place is not hard and it has gone down in size. I guess I'm just looking for some piece of mind. Thanks! Crazy mom lol

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Anonymous's picture
Replies 1
Last reply 12/28/2016 - 12:54pm
Replies by: Tim--MRF

Where to begin.... 

About a month ago I noticed a odd mole on the sole of my foot ( yes the bottom odd right?) it was never there before it was almost like I woke up one day and bam there it was. It was odd shaped and darker in the middle and also raised up a bit on the darker spot however it wasn't very big. I call the doctor just to have it checked out, he decided to remove it. Now I don't know all the technical terms here but he cut around the mole and also cut deeper down into the mole which required me having 3 stiches. After a week of stiches I go back in last Friday the 23rd of December to get the stiches removed nasty wound but all looked fine. Still haven't gotten any biopsy reports back.... this all seems simple and pretty much like a routine process for people who get moles removed I was nervous but not to concerned as I figured everything would be fine. Now I'm ready to hop into bed last night and I noticed another mole popped up right on the edge of the wound I have from the mole he just took out less then 2 weeks ago... same thing it's small but growing because it wasn't there the day before. Again odd shaped and a dark spot in the middle. I am still awaiting biopsy reports from the first one and now have made another dr appointment for this new mole. So my question is or concern is, is it possible for a mole to grow that fast and also what could this mean?! At this point I'm pretty much in full stress and anxiety about this. And I figured this is the best place to get some kind of answer to ease my mind while I wait for the doctors reports... any help is greatly appreciated!!

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clisc's picture
Replies 13
Last reply 12/28/2016 - 2:41am
Replies by: clisc, Treadlightly, jvictoria, Linny, Anonymous
Few days ago I noticed small dark spot on my 4th toe's nail.
The dark spot is localized probably below the nail or in its structure- I'm not sure.
I play football once a week but I do not remember any impact that may caused bruise.
I do not know whether the spot is moving as the nail grows. I need more time to analyze it. I'll do photos once a week to notice it.
It's possible that the spot is present from few months. I remember that I saw little dark spot but I thought that it was caused by football hit and I ignored this. I do not remember how big was that (maybe the same size or smaller).
Here is a link to the photo of this toe.
Is it possible to predict on the basis of the photo? What could be the reason? I'm afraid some serius like subungual melanoma. The photos of melanoma over the internet shows advanced stadium so it's hard to compare. 
What tests should I do? Observation & photos? Dermatoscopy? Bunch biopsy? Radical biopsy (Surgery to remove the nail)?
Biopsy is best for sure diagnosis but I'm afraid of Radical biopsy related to pain and complications (this spot may be nothing serious!).
Would the punch biopsy be suitable for my case? Should I wait few weeks and see whether or not the spot movina as nail grows.
Wouldn't the puch biopsy be noxious in case of melanoma?
Which tests should I do first and where to look for help?
Is dermatologist will be able to conclude anything on the basis of the inspection?
Please help! I have a "small" problem, many questions and no answers.

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Sophietx's picture
Replies 2
Last reply 12/27/2016 - 6:52pm
Replies by: Sophietx, Janner

I recently had WLE for Melanoma in situ. Also had genetic testing done and no found links. My almost 13 year old blond, blue eyes has over 5 large 1 cm and more moles on his scalp. Also a nasty mole in his belly button. He is having surgery today to remove the mole in his belly button and 1 large dark mole on his scalp at Cook Children. Should we consider having all his large moles removed? If yes, would he have bold spots? He has lived in FL and CA. I am worried about him. Any advise? Both of my kids will go to annual skin check ups. My 15 old girl doesn't have any moles. Are moles genetic or my son got them because of sun exposure?

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