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.

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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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RayPMcConnell's picture
Replies 12
Last reply 10/8/2015 - 11:16pm
Replies by: JoshF, mrsaxde, RayPMcConnell, jamieth29, Anonymous, Mat, BrianP, Bubbles

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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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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Millykamp's picture
Replies 19
Last reply 10/8/2015 - 7:51pm
Replies by: Millykamp, geriakt, BrianP, Ed Williams, jpg, mjanssentx, Anonymous

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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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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Coneflowers's picture
Replies 6
Last reply 10/8/2015 - 6:16pm
Replies by: 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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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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Anonymous's picture
Replies 2
Last reply 10/8/2015 - 3:35pm
Replies by: brewgirl68, Kim K

Anyone have BRAF testing done in stage 3 (we are stage 3b w/local recurrence)?  We are having difficulties getting insurance to cover.  I think it's very important to know as soon as possible.  And it would also be helpful as we decide on doing a study, etc now.  Any ideas, tips, etc you have would be wonderful.  Thank you!


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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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arthurjedi007's picture
Replies 32
Last reply 10/8/2015 - 12:53pm

Well it's been another week of no treatment. Like I mentioned the doc would not let me in the trial. He wanted to start the keytruda abraxane last Friday. It is interesting mda has what is called a business center or financials to get such things approved. I was told Friday it would probably take a couple hours and treatment would be Friday or that weekend. Monday I was told 48 hours by the bs and my insurance. Tuesday I was told it was still in medical review. Wednesday the bs said it could be 10 to 15 business days.

The melanoma group although the keytruda was approved they refused to give me a dose to get me by until the combo treatment got approved. They said the doc wants me to do both.

Apparently insurance has their own doc's. One of the latter stages is what they call a peer to peer where the insurance doc talks to your doc. Instead of having to wait weeks I would have thought a good team would get that accelerated to either get it approved or denied. But maybe that's not possible. I dunno but I'm pretty sure it is.

Anyway I'm very upset with the mda melanoma team. At least the group I have with dr Diab. By not even giving me my regular pd1 I had to travel back home missing my very important meeting with the neurosurgeon. It has been 4 weeks overdue since I've got my pd1. So yes the doc correctly saw I was in worse shape than when he first saw me a few weeks before. Plus I lost a lot of money with the nice apartment we had rented and air fare but money is minor issues compared to the important stuff.

Anyway I'm back home. I've requested via their app to reschedule the neurosurgeon appointment and treatment that never happened for the last week of this month. I'm not sure yet if I'm going back a third time or not. So far I've been hosed twice by mda in my opinion. Also my local doc is totally against this treatment the mda doc has changed to. Their refusal to work with me to get just pd1 really upsets me. So I dunno. But my back and legs hurt a lot it has become a problem just trying to walk so I dunno. That wasn't anywhere near this bad before I went to mda. So I dunno. I'm quite depressed, frustrated and upset.


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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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Rita and Charles's picture
Replies 12
Last reply 10/7/2015 - 11:25pm

HI All, 

It's like Christmas [ well sort of if you had a very grim Christmas] and we received Charles' medication.  Can anyone that takes this combo/ or has taken it share if you took it on an empty stomach or after eating for best "feel good" life??  

Does if make your tummy super upset?

Thanks - any comments are helpful!  

Good news, our first 5 months we got covered by a patient access $ pool - super nice gal at the pharmacy worked with us...........see, like Christmas?




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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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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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