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 2
Last reply 5/7/2015 - 6:11am
Replies by: AshleyS, Wheels1994

With bad luck in the past on just getting the Dr they give you, we're asking for help. We have done alot of research and want a Dr to go over all treatment and clinical trial options weather at their location or another state.. Thanks

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arthurjedi007's picture
Replies 15
Last reply 5/8/2015 - 1:50pm
Replies by: Anonymous, arthurjedi007, ecc26, JoshF, Wheels1994, Mat, RJoeyB

Basically they have several immunotherapy trials with no openings. They are phase 1 stuff for things they briefly mention in the videos we watch that they are looking into. Also if I understood right although the lag3 pd1 trial has arms for those of us who failed pd1 they haven't started filling them. they have one opening for one trial they have not given to humans yet but you have to have a certain protein on your tumor biopsy so should know in about 3 weeks. Talk about a ratty if that happens. 

He also thinks TIL is an option if you can get in.

For those who have ran out of immunotherapy options he has seen a chemo combo do really good. Way better than they used to see. I forget the names but he said they are fda approved.


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Anonymous's picture
Replies 7
Last reply 5/8/2015 - 7:52am
Replies by: 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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Replies by: Janner, kpcollins31

I love my onocologist but he can be so vague....please help me understand.

just had surgery a week ago for right axilla lymph node dissection.


Final Pathologic Diagnosis:

A. Lymph Nodes, Right Axillary, Level 1 and 2, Dissection:

       * Metastatic Melanoma involving matted lymph nodes, 5 cm aggregate;  14 additional negative nodes

B. Lymph Nodes, Right Axillary, Level 3 and 4, Dissection:

     * Metastatic Melanoma in one of 4 lymph nodes, 1/4/

    * Metastasis spans up to 3mm.

   * No extrandoal extension is identified

C. Skin, Right Supraclavicular Area, Wide Excision:

    * no melanoma identified

    * previous biopsy site



In  conjunction w/ previous Path report from 3/13/15 , pathologic stage is pT3a pN3 (matted metastatic nodes)

BRAF mutational analysis was performed on prior biopsy 




ok my previous biopsy i posted as well the path reports, but i dont see anything saying BRAF, i know i am clueless.


They are reveiwing my case during tumor board tomorow to come up with the next plan of action, be it radiation or immunotherapy. But I am so clueless. I dont know what any of that means and it seems he just likes to be vague and keep it moving. So basically i am still waiting. But hey least they got these nasty tumors out of me.


Anyone that can help me understand this will be greatly appreciated...





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Lkopf's picture
Replies 6
Last reply 5/11/2015 - 10:58pm

Hi everyone! I am a 23Yr old nursing student. I was diagnosed in March of 2015. My story is still in the making but here it is. In 2011 I had a suspicious birthmark that began to change so I had it removed by a dermatologist. No big deal. Fast forward 4 years to today... I had a lump show up in my forearm, my dr wasn't very worried at first. But several months later more lumps started showing up around my neck and underarm. Long story short I now know that I have stage 4 melanoma. It is widespread in my body including some places like my gallbladder, spleen, both adrenal glands, lungs as well as my brain.  I underwent a gamma knife procedure 4/2015 to attack the 12 lesions in my brain. I had a small complication from several of the lesions bleeding but feel good. I start yervoy treatment tomorrow and am having some nerves but staying positive. Hopefully I can find someone who can say they have been where I am. Thank you!

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Anonymous's picture
Replies 1
Last reply 5/5/2015 - 11:06am
Replies by: Anonymous

What is the best hope for small nodular metastatic melanoma that originated as mucosal (anus)

Are these smaller nodular types more diffucult to treat?   

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Wheels1994's picture
Replies 3
Last reply 5/5/2015 - 3:02pm

I've had many side effects come and go.  However, this Peripheral Neuropathy that I've had for the last 5 months has been ridiculously annoying.  Constant numbness and tingling of the feet and numbness of the finger tips.

Took all of the neurology tests to rule things out.  The theory is that the when I had 3 treatments of CVT following my Yervoy failure, the 3 Cisplatin doses caused a slow, progressing case of peripheral neuropathy that took about 3 months to get where it is today.  The docs seem to think it will get better with time and possibly subside completely.  There's also thought that it could be permanent to a degree.

I'm thankful that this is the only thing I'm dealing with right now at stage 4.  Just wondering if anyone else has had this experience with peripheral neuropathy:

How long did it last?  What was your experience?  What drug caused it?  Did it progress slowly then level out?  Duration?


Thanks in advance for a recount of your experience!


Matt King

Diagnosed Stage 4, July 2014

MD Anderson, Dr. Patrick Hwu

IU Health Simon Cancer Center, Dr Ted Logan

Currently responding to KEYTRUDA since January 2015

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Anonymous's picture
Replies 6
Last reply 5/4/2015 - 10:59pm
Replies by: Anonymous, Janner

I was diagnosed with a lentigo maligna in the bowl of my ear and had surgery and a skin graft a few months ago.  I am a teacher and coach; my job puts me in the sun many hours a day in the deep south.  I'm a 49 year old male in otherwise, good shape.  I spotted this new "spot" and showed my dermatoligist.  The shave biopsy came back as a lentigo maligna...I have been seeing my derm on a regular basis for years, have had a few moles removed, and  most came back "mild" with one or two coming back "moderatley" atypical...until this one. So, I saw an ENT oncologist who gave me some options. I chose to stay with him and do an aggressive WLE instead of Moh's.  He took out the skin in the bowl of my ear and the cartilage underneath.  All the margins can back negative and no evidence of any melanoma in the underlying cartilage.  The pathology again came back as lentigo maligna - in situ.

They tell me  I am lucky to have caught this early, but I still feel somewhat confused.  I worry that my job puts me in the sun so much and that lentigo maligna has a high recurrence rate.   When I asked my derm and the oncologist about moving forward...should I stop coaching or participating in outdoor activities?.. they say, "No, just be "sun safe".  I have been and will continue to be "sun safe", but the anxiety I have when outside is sometimes all I can think about. Should I even be outside in the heat of the day?  If I am, will it make it more likely to recur or get a new or different melanoma?   Too many questions....



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Hi all, been a little while. My daughter had a metastitised tumor in liver that started at 14 cm then after embolisation and yervoy, it is now gone from 10.2 to 9.4. All other organs still clear. They now want to start her on Keytruda to try to shrink it to an operable size. Anybody that can give me advice of side effects and progress? Doc said should be less side effects than Yervoy. She will need 4 to 6 rounds. 

praying for resection this year! 


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tgeorge1's picture
Replies 6
Last reply 5/9/2015 - 10:12pm
Replies by: tgeorge1, Janner

Please bare with me, this is kind of long!   I'm looking for some insight from folks I suspect may understand where I'm coming from.  I’m a 32 Yr old male with fair skin, blue eyes, blonde/light brown hair.  Thankfully, I’ve never had melanoma but have a family history. My Grandmother had one about 10 years ago – she is alive and well today, my Grandmother on fathers side died from melanoma in her 70’s or 80’s and her son and daughter - my aunt and uncle on my fathers side - have had melanomas in the past (unsure what stages) – both are also alive and well today.  My father and mother have not had any skin cancers.  About 5 years ago, I had a basal cell carcinoma removed from inside my ear.  I have gone for regular skin checks annually since then. At my last annual exam last December, a concerning mole was removed from my back which came back as a mildly dysplastic nevus.  For some reason it was at this point in time when I began to do some research, that I began to have anxiety for the first time over the chances of melanoma.  After this exam and biopsy in December, I began to really evaluate and look at all of my moles much closer than I ever had previously.  I went back to the dermatologist in late Jan because I had one that just didn’t look right to me – they biopsied it (I think more for my peace of mind) and it came back as a normal mole.  From my continued and now much closer evaluation of my moles, I noticed something on my face – a small nodule – that I noticed from pictures hadn’t gone away in almost a year and got concerned.  I went back in last month to have it checked and it was absolutely nothing – scarring from my own picking at it.  As of now, I have my next appointment scheduled for the end of June which will represent 6 months since my last full body scan in January.

I find trying to balance not wanting to be paranoid at every single mole on my body that doesn’t look right, with being proactive if something were to be “bad” so that I could catch it early.  Since I never have looked at my moles as closely as I do now, it’s difficult for me to know what has changed.  Once that look odd might have always been that way for all I know!  I’ve got many odd looking moles.  The biopsy in January – other than my BCC – was the first time they had ever biopsied one and I think it was more out of an abundance of caution due to my personal and family history.  My derm tried to assure me that if I am coming in every 6 months for a full scan, if something were to turn bad, they’d likely catch it early. I also know from reading these boards, that isn’t always true.  I also know I can’t go in every single month to have them look at me, especially because I’ve never had a melanoma!  So I’m faced with the decision of waiting until my next appointment versus going in far too often. I try to remind myself that my derm would have told me to "watch this one" or done a biopsy at my last visit if something was alarming but what if it the mole has changed and I just didn't realize it?  Is this mental battle I’m having over being paranoid about every mole versus wanting to be proactive, normal?  How do people handle this?

Here’s a perfect example, I have a very large mole that has been on my neck – just above my collar bone – for as long as I can remember. I remember as a child being told “it looks fine just keep your eye on it”.  I’ve always pointed it out to my derms at my visits and they always assure me that while it’s large (about 10mm) and not pretty looking, it is “fine”. Never have they even wanted to biopsy it.  Lately – at least in the last two weeks I’ve noticed – a tiny bump in the upper half of it.  It’s hardly noticeable to the eye and I can’t even tell there’s something there if I simply run my finger over it.  But if I look closely enough and spread the skin out, it’s there and I don’t ever remember seeing it before.  The bottom half of this mole has a hair protruding out so part of me wonders if this is just a hairless hair follicle.  It’s a perfect example of not knowing if I should just continue to watch and wait for more pronounced growth,/change (assuming it hasn't always been there unbeknownst to me), if I can it wait until my next exam in June to have the dermatologist evaluate it knowing that’s only about 6 weeks away or should I make an appointment (even though I was just there!) to have it seen asap?  This is the problem I’m facing.  I suspect some might say "don't take any risk" if you are worried go have them look at it however I just had a full body scan three months ago including this one of concern. I used to only go for annual visits however after the recent mildly dysplastic nevus biopsy, they recommend every six months.   

Everything out there in regards to the characteristics of melanoma to watch out for are extremely helpful but when you haven’t always paid close attention to each mole and then begin to, it’s hard to really know.

Sorry for the long post, it did help me to feel better just to share it! If anyone has any thoughts/recommendations, etc I'd apprecaite hearing them.

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Anonymous's picture
Replies 2
Last reply 5/6/2015 - 4:20pm
Replies by: ecc26, Julie in SoCal

Hi All,

I recently posted about a strange side effect from Keytruda that I started having about 6-7 months into treatment. Cramping and soreness all over my neck and torso with severe movement restriction. My newest scans showed a further shrinking of the tumour in my lung to 3 cm x 1 cm and my bloods were all good although the inflammation markers were a little high.

I have been put on steroids for a week- 25 mg prednisone and it improved a lot. Now we are weaning me off 5 mg per week to see how I go. We will not continue with the Pembro until we have it under control and i suppose there is a chance that they may not put me back on unless the cancer starts to grow again... scans again in 3 months. My doctors said there are cases where the drug keeps working even after it has been stopped and they are hoping that in my case.

Has anyone else had to stop Keytruda and go onto sterooids because of side effects, and did your cancer start to grow again after an initial good response? How long till it started to grow again?



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vince1962's picture
Replies 3
Last reply 5/5/2015 - 2:19pm

Would like to know whats out there if there is anything!! what type of treatment stage 4 melanoma and hep-c is there a combo or single type treatment. Any advice, Thanks

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MoiraPA's picture
Replies 5
Last reply 5/2/2015 - 10:24pm
Replies by: Janner, MoiraPA

Hey everyone. This might be a dumb question but can someone tell me what "AML" means/stands-for if on a pathology report (from a shave biopsy) it's listed as the "clinical diagnosis"?

if it matters, the mole came back severely atypical



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AshleyS's picture
Replies 6
Last reply 5/4/2015 - 7:17pm

I started the ipi+nivo trial at MD Anderson on March 5. I cruised through the first 2 infusions with only a rash controlled by antihistamines. After the third infusion of the combo (out of 4) I developed a fever. I had blood work and a chest X-ray. It was clear. A couple days later I started to feel nauseous. It spiraled into chills, vomiting, and diarrhea. I took in about 400 calories in 4 days. My husband took me to the local ER. They put me on fluids and after talking to my docs at MDA, I went on steroids. I was bummed, but  I know it was my only choice . 

It sounds like I will not have my fourth combo infusion. I'm kind of sad about this. I'm hoping that they will continue me on just the anti-PD1.  It sounds like I'll be lucky and get to have a colonoscopy this week! We'll see where this all takes me but it definitely feels like a setback. 

In the meantime, I'm happy to be feeling better for my husband, my two-year-old, and my five-month-old baby. 



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darinohio's picture
Replies 4
Last reply 4/30/2015 - 11:31am
Replies by: Anonymous, darinohio

Just curious if anyone else panics over odd unexplained pains. I have been having radiating pain under my arms

for a couple weeks now. I first thought it was from working too hard in the yard but it hasnt gone away.

somtimes its painful and runs down to my hands.

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