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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Hello everyone,

As some of you may have seen on the MRF website and social media channels, this year we invited the young artists of our pediatric melanoma community to submit designs in a Holiday Card contest. After receiving many wonderful entries, 5 winning designs were selected and are currently being offered for sale. Available for $20, each box of 20 cards will contain four cards of each design and all proceeds will benefit the MRF's pediatric melanoma programs in research, education and advocacy. You can order as many box sets as you would like, but act fast as the deadline is this Thursday, October 15. You can view the winning designs and place an order at the link below:

Thanks everyone, we hope you have a great day!

Adam - MRF

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Tracy Seattle's picture
Replies 3
Last reply 10/13/2015 - 1:28pm

My tumor is in my clavicle lymph nodes.  I have just finished a 2 year trial of nivolumab followed by 4 courses of ipi.  At one point in the trial I was considered "complete response" due to tumor shrinkage.  Then the tumor grew bigger.  My last scan showed about the same size but necrosis in the center of the tumor.  My tumor is very easy to feel and see as it is just above my collar bone.  In the past couple of days it feels like it has swollen up a bit and is sensitive.  My shoulder and scalen muscles in my neck are also extremely tight and tend to push the tumor up when they get tight.  Wondering if anyone out there can actually feel their tumor and ever has these kinds of sensations.  I hope this thing isn't try to battle back again!!  

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Anonymous's picture
Replies 4
Last reply 10/13/2015 - 1:27pm

Has anyone had issues with an overactive thyroid after taking keytruda.

I have seem to have some issues swallowing and i am sort of restless and irritable.

I was wondering if this could be thyroid related and what is my doctor likely to do about it.





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DennysGirl's picture
Replies 6
Last reply 10/12/2015 - 9:08pm

My hubby is having pain in his left lung which did not have any spots before. He had just had a CT scan beginning of August and has been on combo since mid June. It seems to be the same type of pain he had from his first tumor (inoperable) in his right lung back in June. 

Do new tumors pop up while on the combo that the drugs can't affect? My dad seems to think the pain is all in my husbands head because a new tumor can't pop up while the meds are working on other tumors. 

He was doing so good until the past week. 

Renee~loving wife fighting for her hubby! 

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Shannon's picture
Replies 6
Last reply 10/12/2015 - 7:43pm

Hello All,

I just signed on to this site and am having a hard time navigating, hopefully this message will come through.

3 weeks ago I went to the derm for my anual full body scan to check for problems, she found something, did a punch biopsy and sent it off.  Here is what the path said, I am very nervous.  I already have uterine cancer and simply cannot go on in dealing with yet another diagnosis, when I simply went in for simple peace of mind =(

"Compound nevus with architecture disorder and moderate to severe cytologic atypia.

Examined biopsy edges are negative for atypical nevus".

She wants to take more of the border to make sure, I guess that they got it all.  I am worried that they want to verify their findings that this could possibly be melanoma.  I have never had anything like this before.  I am 48 year old female, blonde with blue eyes, very fair skin.  Did some indoor tanning years 3 years worth.  Please help!


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arthurjedi007's picture
Replies 2
Last reply 10/12/2015 - 4:17pm
Replies by: Scooby123, BrianP

Anyone know what this leg pain could be. I've never had it like this. When I was off the pd1 for 4 weeks I had lots of pains in my back, hips and left leg. Then Monday I got opdivo pd1 and by Tuesday so much better only pain was some in my left leg and left hip.

Then Wednesday night massive pain along the front of my legs. From mid thigh to mid calf including the knee. Very difficult to stand due to pain especially above right knee.

When I stand you can actually see the right leg from mid thigh to mid calf is quivering on its own. Maybe like a spasm. Plus both legs are a bit wobbly. Then when I walk it is hard but not as bad as trying to stand. None of that tingling in feet or stuff they sometimes ask about.

By Thursday morning I got the pain under control by taking 10 mg oxycodone about every 4 hours. Slept through Thursday night with no pills and woke with no pain. Until I moved to get up that is then massive in the legs again so more oxy. This morning didn't even have to move so more oxy.

Ive got lots of tumors in my spine and pelvis. One in my left upper leg. My left lower leg was radiated last year. Never had any issue with right leg until now so very surprised. Recent spine MRI said I had cord displacement at the t10. Haven't had that since I was almost paralyzed last year. Also said there is a defect in the vertebroplasty I had done at mayo last summer. So my mayo doc should get the scan disk Monday. My saint Louis doc got it last Wednesday. I figure I'll call my saint Louis doc Sunday night so they have the message for Monday. I usually try to see how these things go on their own because they usually get better after a couple days but so far this doesn't seem to get better. Not sure what it is. Dad thinks it might be something pressing on a nerve.


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Gordknight's picture
Replies 9
Last reply 10/12/2015 - 2:11pm

So to give you a brief history I am somewhat of a hypochondriac.. was diagnosed with a stage 1a melanoma back in October of 2014 and had my WLE in early November.  So its has almost been a year.  My melanoma was located on my left neck, Superficial Spreading, was clark level 2, 0.22 mm breslow thickness and had no ulceration and had no mitosis.  Because of the shallowness of the lesion no SNB was done.  The scar has been healing nicely.

I know that even those of us that arent hypochondriacs it takes a while to not think that every new pain or ache is melanoma coming back of metastitis.  Anyway I have been keeping up with my appointments with my Derm and he has removed a few spots since and all have come back benign.  

Anyway, about a month ago I woke up and my left ear felt compltely muffled.  Hearing was drastically reduced.  Went to an instacare who sent me to an ENT who couldnt find anything.  within a week after the ENT appointment my hearing came back completely, however ever since (so the last 3 weeks or so) I have had pressure on and off in both my ears, and random sensations and pains in my face and shoulders and neck, but the most concerning are random ice pick like headaches that come and go.  There is no rhyme or reason to them, they are sharp and stabbing and usually occur on either my left or right temple.. sometimes on the top of my head and rarely the back of my head.  Sometimes I go 5-10 minutes between them.. sometimes I go 5-6 hours between them and otherwise feel normal and fine.  No real balance issues, no vision problems, haering is mostly back to normal.  No swollen lymph nodes that I can feel.  

Of course my mind instantly jumped to brain mets from my thin melanoma after this not clearing up for 2-3 weeks.  I know the odds arent really tipped that way, but of course melanoma has destroyed my way of thinking logically. To be fair I have been under a lot of stress and anxiety over the last two months with health issues my wife has had that have thankfully been resolved.

So I went to my GP today and told him the whole story and because of my melanoma history he is sending me in for an MRI tomorrow.  He said the symptoms dont sound typical of bran tumor but beacuse I had melanoma he doesnt want to take any chances.  He then also perscribed me an antibiotic that he wants me to take if the MRI shows nothing or sinusitus.  

Anyway are we jumping the gun getting an MRI with a lesion as thin as mine?  I know that melanoma can spread at any stage and its a tricky beast, but it kind of scares me.  My derm said that the chance of my melanoma spreading internally or coming back is less than 2 percent and that the chance of me getting another one in my lifetime is around 1 in 50.. but 2% is 2%.  Anyway thanks for listening to me vent and thanks in advance for any advice you have.  Ill let you know how it turns out. 

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DennysGirl's picture
Replies 14
Last reply 10/12/2015 - 1:05pm

My husband is stage 4. He is 47 and Diagnosed in May with mets in brain, lung, liver, neck, spine, ribs, knee. In June he was having end of life symptoms but then the dr put him on Mekenist and Teffinlat combo. Within a week he was seeing results. 2 weeks ago he started having pain again in back. He went for his appointment and the dr informed us that by his CT scan from Early August, that he didn't think he would react to the combo much longer and at that point would try Yervoy. It was likea punch in the gut! His lung tumor had shrunk to half is its size! How could he not be reacting to it much longer? 

My husband was depressed and forgot to mention the back pain. Now this week he is having pain in both lungs and as of 3 days ago is coughing up blood again. He has a MRI and PET scan scheduled for Oct 14. But we are supposed to fly to Florida for a month, leaving on the 20th and flying home on Nov 18th. His next appointment with the dr isn't til Dec 1. 

My question is..... Do you think we should cancel our trip?  My husband is scared we will get thee and he will just get worse and then will be so far away from his hospital and Drs he trusts. We would be staying at my parents house so we wouldn't be totally alone down there. But the word around down there is that their hospital/Drs stink when it comes to cancer. 

Another question, Has anyone ever had these experiences with Mek and Teff, where they seem to work great than all the sudden stop?

Does anyone know of anyone who has gone from that many mets stage 4 to NED? Not giving up hope, just trying to be realistic. 

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lsmith - MRF's picture
Replies 3
Last reply 10/12/2015 - 12:18pm


As you are aware, there is an unusual amount of spam on MPIP right now. We believe there is an issue with one of our spam filter's and we're working to fix this as swiftly as possible. We are also working to implement measures to the website to help prevent this from happening again. 


Lauren - MRF

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Tracyd715's picture
Replies 5
Last reply 10/12/2015 - 10:04am
Replies by: Anonymous, Tracyd715, Patina, kylez, Jubes

Well, my husband went in Friday for his gamma knife treatment. On the new MRI on the more advanced machine they found 13 pea sized lesions along with the original one he was there for. They treated all of them with no problems. Then early Sunday morning I was women up by him having a seizure in bed. Got him to the ER by ambulance and shortly after getting here he had another shorter one. They found swelling from the procedure and the main lesion had bled. I guess the bleeding isn't uncommon with melanoma mets on the brain. So hopefully with the medication he's getting this should straighten out. Ugh! Was hoping the gamma knife was going to be easy.

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emagdnim83's picture
Replies 3
Last reply 10/12/2015 - 9:38am

Hello everyone,

i have posted about my father a few days ago ( and wrote about that his 2nd dose of opdivo was delayed because of low lekocytes. Turned out i wasn't low leukocytes but his blood test showed he is low on albumin and is now getting an infusion with human albumin tomorrow instead of his opdivo dose.

Has anyone experienced this? Is it something to be worried about?

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Sbdeutsch's picture
Replies 3
Last reply 10/11/2015 - 11:46pm
Replies by: Patina, 273c

My boyfriend is supposed to start a BMS Clincal Trail.  They need to test for PD-L1 biomarker.  He has now sent two set of tissues over the past 6 weeks to BMS and both times they have come back saying the sample was not sufficient enough to test/analyze for the biomarker.  We are having Moffitt send a third sample out to BMS but I am so worried it will have the same issues.  We are running out of time for him to get into the study since he needs to start within 12 weeks of his last surgery.  Has anyone run into this issue?  Does anyone have any adivice?  Greatly appreciated.



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RayPMcConnell's picture
Replies 13
Last reply 10/11/2015 - 11:34pm

On October 13, 2013, I asked my primary care physician to look at a mole on my lower right chest. After examining it he stated that it was a benign keratosis.

On October 4, 2014, I first experienced groin pain and swelling that lead to emergency surgery for what was thought to be an incarcerated hernia. It turned out to be a swollen lymph node. The local pathologists eventually referred the specimen to the Mayo Clinic, who diagnosed metastatic melanoma in late October. I was then referred to the Melanoma Clinic at U of M Hospital in Ann Arbor.
A PET scan was done on November 7, which revealed no additional hot spots other than the post surgical inflammation in the right groin and the mole on my abdomen. Scattered indeterminate lung nodules were detected that would require follow-up.
At my first appointment in Ann Arbor on November 12, I was informed that I would undergo right groin lymph node resection surgery on December 4. The mole was removed, biopsied, and confirmed as the point of origin (Clark's Level IV, Breslow Depth 5.5 mm).
The surgery was performed, and, after over a month of recovery time and the removal of the two surgical drains, I was first seen by my oncologist in Ann Arbor, who stated that I was Stage 3C, and would be subsequently seen for surveillance assuming that the chest, abdomen, and pelvis CT and brain MRI were negative.
The January 19, CT scan revealed multiple nodules in both lungs, several having quadrupled in size compared to the November 7 PET scan (the largest went from 4 to 17 mm). A lung biopsy on February 6, confirmed that I was Stage 4.
I received 2 of 4 infusions of the Nivolumab and Ipilimumab combination immunotherapy treatment on February 27 and March 24, before severe toxicity reactions forced a stoppage.
I developed drug-induced autoimmune hepatitis, diabetes requiring insulin injections (blood sugars spiking to over 500), and meningitis-like brain inflammation. 
I was hospitalized for two weeks and prescribed steroids for a few months until my liver function returned to normal.
On the bright side, CT scans in March and July showed continued shrinkage in both the number and size of the lung tumors, and the CT scan done last Friday showed No Evidence of Disease!


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Gene_S's picture
Replies 8
Last reply 10/11/2015 - 10:49pm

My husbands journey with melanoma started in Jan. 2008, had 4 surgeries and was watching and waiting until he became Stage IV in Oct. 2010. His SLN came back negative and he had his WLE on Feb. 14, 2008.   Mets in the Liver, Lungs and an unresectable putting pressure on the C1-C2 Cervical spine and 4 sub q's by Mar. 2011.  The unresectable would have left him a paraplegic if they did surgery.

Started a clinical trial in March 2011 on Ipi (10 mg/kg) and GM-CSF.  Did the 4 infustions of Ipi in 12 weeks and doing daily injections of GM-CSF for 14 days and then no injections for 7 days.  Watched the sub q's shrink and it was amazing.  Took photos with a nickel so you had something to compare them with.  Went on maintenance dosing every 12 weeks for the Ipi and the whole time doing the GM-CSF on for 14 and off for 7.  In October of 2012 he became NED.  Remained on the trial on maintenance doses until Dec. 2013 and them quit taking the Ipi and the GM-CSF.

We are so very happy that he has remained NED (no evidence of disease).  If you would like to read more about his journey then check out his profile.

Judy (loving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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liberty04281's picture
Replies 1
Last reply 10/11/2015 - 10:39pm
Replies by: Patina

We have a lot of spam. Can it be fixed?

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