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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Tracy Seattle's picture
Replies 5
Last reply 10/16/2015 - 3:36am

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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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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DennysGirl's picture
Replies 22
Last reply 10/19/2015 - 9:36am

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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Anonymous's picture
Replies 10
Last reply 10/29/2015 - 9:17am
Replies by: blessd4x, Ed Williams, casagrayson, 273c, jbronicki, kylez, 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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Daisyduke's picture
Replies 9
Last reply 10/29/2015 - 2:18am



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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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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RayPMcConnell's picture
Replies 14
Last reply 10/22/2015 - 8:01pm

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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I found this brochure on brain mets from the American Brain Tumor Association.  I thought it gave a solid background for anyone where this is a new issue so I wanted to share the link.

To preface this, there is new data that says gamma knife rather than whole brain radiation may have better outcomes and is not be as damaging to the brain.  It also may not be beneficial in the long term to use whole brain radiation.   

"Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors vs whole brain radiation."




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Patina's picture
Replies 6
Last reply 10/17/2015 - 2:07am
Replies by: Patina, kylez, 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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mkirkland's picture
Replies 3
Last reply 10/8/2015 - 3:31pm
Replies by: brewgirl68, geriakt

Just curious what treatments you guys have had for stage 3a. I meet with my medical oncologist 11/5. 

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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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Anonymous's picture
Replies 2
Last reply 10/7/2015 - 2:29pm
Replies by: 273c, arthurjedi007

The doctors are recommending radiation post surgical resection for stage 3.  Of course, there's the option to wait and see but it sounds like the recommendation is pretty strong for radiation (esp since melanoma has come back once locally).  Wondering what other people in our shoes have done?  And if you've done radiation, what have the short term/long term side effects been for you?  We are likely going to be doing  Keytruda/ study as well but need to decide on radiation first....and quickly:) 

Thank you so much for sharing!  Also just wanted to say what a blessing this site has been for us.  It's nice to know there are others out there going through this and we're not alone.  The support and information provided by the people on this site has been unbelievable.  Thank you!


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mary1233's picture
Replies 6
Last reply 10/8/2015 - 9:23am

I hope someone can explain this. The announcement that the FDA has approved the ippi-nivo combination for melanoma patients who are wild-types also included a statement that a year's worth of the treatment would cost in the neighborhood of $250,000.

Here's the queston. I get my insurance through my husband's employer who self-insures. Can my husband's employer fire him because they don't like my medical bills and do not want to be responsible for them? Has anyone dealt with this?

Don't even get me started on how the cost could be $250,000 - I do not understand why anyone whould think I am worth that kind of bill.

Best wishes to all.




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