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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SunnyTheNurse's picture
Replies 3
Last reply 10/11/2015 - 4:42pm
Replies by: Jubes, CHD, stars

Hi there, I'd love to hear from anyone else diagnosed with this very rare cancer. 

I'm 39, live in Australia and have had two large growths removed by way of radical hysterectomy. Furthermore, biopsies from that found cells in my vagina and removed pelvic lymph nodes. I've had radiotherapy and am now about to begin a new immunotherapy treatment. It's uncharted waters in terms of how to beat this. Please share your approach. Erin


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Patina's picture
Replies 5
Last reply 10/11/2015 - 2:58am
Replies by: kylez, Patina, yazziemac

My Mom, who is has Stage IV Melanoma (11/2013) and has been treated for 28 brain tumors, went for her regular followup and was told that one tumor had a bit of bleeding around it. - I didn't go with her to her appointment this time and don't have all the information on this appointment. She was headed to Las Vegas after her appointment for a little vacation.

She was told to come back in 2 weeks for a re-exam and that she could not drive right now because of the bleeding.

I can't find a lot of information on bleeding around the brain tumor after gamma knife radiation and am curious of what others may have been told if this has occurred.  She said that her brain might reabsorb the blood, but I am worried that they've asked her to come back after 2 weeks when she usually see's the doctor every 2 months. 

Anyone experience anything like this or know anything about bleeding around brain tumors?




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Millykamp's picture
Replies 22
Last reply 10/10/2015 - 9:23pm

so I got my report back on my SLNB and just need someone to explain it to me. 

Sentinel lymph node #1, left axilla, biopsy: One lymph node positive for

metastatic melanoma (1/1)

Sentinel Lymph Node Biopsy 

Body site: Left Axilla

SLN: #1



Diagnoisis: yes

H and E: : positive 

S-100: positive 

Melan-A: positive 

Location of metastatic tumor: Subcapsular
Extracapsular extension: Absent
Benign nodal nevus: Absent


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Coneflowers's picture
Replies 9
Last reply 10/10/2015 - 8:11pm
Replies by: tbmorgan, Coneflowers, stars, kylez, Anonymous

Looking for someone that might have experience with this. My daughters case is very rare, as she was born with this rare type of melanoma. We think it was growing as she was growing,  as she has it in many places. Liver, lungs, bone, scalp. She has started opdivo and just turned 6 months old. Any help at all would be greatly appreciated.  

Thank you!

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Daisyduke's picture
Replies 8
Last reply 10/10/2015 - 5:11pm
Replies by: BrianP, 273c, Mat, arthurjedi007, geriakt, Anonymous, Andrew1725



I just got back from my appointment and what t thought was a Stage III B prognosis turns out is Stage IV and the Doctor wants me to start either Keytruda or Opdivo,  Which one do most people use and how bad are the side effects?


What have you found to be the success rate when you go back for further scans?  The Doctor seems to feel that this is the best option for me and probably the only choice for right now.  I guess once you are on this drug it is for life is what I have heard.


What is the best and easiest way to get these drugs administered that you have found, going in through an IV in you arm, a PICC line or a PORT?  I am still trying to cope with this new information so I can move on and make the right choice.


I know that with this support group out there I will be able to cope and make it.


Thanks everyone.

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arthurjedi007's picture
Replies 1
Last reply 10/10/2015 - 4:59pm
Replies by: 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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Anonymous's picture
Replies 1
Last reply 10/10/2015 - 4:11pm
Replies by: _Paul_

Has any one started feeling better after nivo/Ipi 

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Tracy Seattle's picture
Replies 2
Last reply 10/10/2015 - 3:28pm

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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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 6
Last reply 10/9/2015 - 6:57pm
Replies by: 273c, jbronicki, kylez, blessd4x, Anonymous

My husband recently diagnosed in August, he had an 8mm mass removed from his arm, informed that it was a bad mass, stage IV, however it is atypical in that thats the only place it was.  It did not spread to the lymph nodes.  Our next step is immunotherapy in 2 weeks and they want to do an MRI on his brain even though we've already done all the PET MRI CAT scans.  I dont know how to feel about stage 4 with this?  What are the survival rates then if it was only in one place?  Will it show up again since it was so bad?  


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emagdnim83's picture
Replies 2
Last reply 10/9/2015 - 9:34am
Replies by: Ed Williams

So my father (77y/o) has been diagnosed with Stage 4 metastatic melanoma in May 2015. He had the primary removed in 2006 with a tumor depth of 0.6mm and it turned out to be amelanotic malign melanoma (it was a red suspicious mole). Follow-Up Checks didn't show anything for the next years.

Until April 2015. He had very bad pain in his back which first wasn't anything it made us worry because he always had problems with his spine (had a discogenic surgery 30 years ago). But this time the pain didn't go away so he went to the hospital in May 2015 where it turned out that his cervical spine was badly damaged due to tumor activity. He had to undergo surgery to stabilize the spine and a biopsy was made. Result was the tumors were mets from the melanoma. Scans showed he had multiple mets in his spine, hip bones, shoulder bones and "little ones" in his lungs which they couldn't tell if they were really mets or just granulomas. So Stage 4. 

He is B-RAF positive so he started a Therapy with Zelboraf in late June 2015 plus radioation of his spine mets in order to stabilize it. After 2 Weeks on 4-0-4 he had to go to the hospital because of a sudden very bad rash. Zelboraf was paused for one week then he started again with a reduced dosis 2-0-2. Side Effects were manageable but the sun sensivity and fatigue were really challenging, especially because we here in germany had an extreme heat wave from june to september. In End of August suddenly a lot of small black points started growing on his head (skin) which were tested and were diagnosed as mets. CT-Scans in September shows that his mets grew under zelboraf and new mets showed up in the liver and maybe in the pankreas :-(.

Zelboraf was stopped immediately and one week later he got his first dose of Opdivo (Nivolumab) at 3mg/kg every 2 weeks. One Day after his first Infusion he was rushed to the hospital because his heart beat rate went lower than 40. It seems that it wasn't because of the infusion but due to atrial fibrillation (he has this since 15 years which is treated with beta-blockers and blood thinners). He was able to go home after 2 Days and his Nivolumab-Therapy will continue since it seems it had nothing to do with it.

Next Thursday he should get his 2nd dose of Nivolumab but it was now delayed because his blood tests showed he has too low leukocytes so he gets a infusion first to build them up and after that, when blood is ok again he will get his 2nd infusion. 

Is this a common side effect? I know that leukocytes often are low on traditional chemotherapy but i haven't heard of it with immunotherapy.

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Debbieamccoy's picture
Replies 4
Last reply 10/8/2015 - 10:53pm

Since I had my first two doses of Ipi and Keytruda ice noticed my eczema clearing up with out using any thing for it and my facial skin hasn't looked this good since my teens . Maybe it's just wishful thinking that this stuff is working 

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Gordknight's picture
Replies 8
Last reply 10/8/2015 - 6:48pm

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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Anonymous's picture
Replies 25
Last reply 10/8/2015 - 4:39pm

Anyone know of any Ipi studies currently available for patients who have 3B and have had tumor completely resected with good margins and complete lymphadenectomy?  We just missed the Ipi/novolumab study and I'm having trouble finding anything else similar.  If nothing available, have you heard of any studies coming out shortly?  We have a small time frame.  Last surgery was 9/2/15.   

Alternatively, any feedback on polynoma virus study?  There's a placebo with it so I'd like to find an ipi study if possible.  But still an option (potentially only option) and I'd be interested to hear any feedback. 

Tumor has recurred once locally so still considered stage 3....but I have a feeling this is a very aggressive tumor.  Don't want to wait and see any longer.  However, not interested in doing interferon.

Thanks for any help or feedback you have!


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mturgeon64's picture
Replies 1
Last reply 10/8/2015 - 3:59pm
Replies by: Kim K

Just wondering if anyone has had to deal with high ammonia levels. My dads in the hospital now because he is so confused and disoriented. Just looking for some guidance.

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