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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magnus31's picture
Replies 4
Last reply 9/10/2016 - 11:15pm

Dear all,

I am stage IV with two visible lesions in close to lung and trachea, respectively.

Ipilimimumab was the initial systemic treatment but I was switched to Nivolumab 20 months ago due to lack of response. Nivolumab has worked well and has shrunk or eliminated all dozen-or-so lesions visible initially.

I am now left with two lesions: A stable, smaller lung lesion and a 40 mm lesion close to the trachea which has grown 10 mm over the past 3 months. Doctors believe it does not respond to the Nivolumab treatment.

I have no pain or problems due to current illness.

I am now faced with the following options:

1/ Add in Ipilimumab to current Nivolumab treatment and see what bitjerapht could do

2/ Attack trachea lesion with cyberknife, continue Nivolumab

3/ Attack trachea lesion with cyberknife, continue Nivolumab and asd in four sessions of Ipilimumab

My primary concerns below:
- I have heard that radiotherapy can make illness more aggressive but then again cyberknife technically is something else.
- Will adding in Ipilimumab "confuse" my immune system which has worked so well with Nivolumab alone?
- Will going "all in" with all three treatments (Nivo + Ipi + cyberknife) be too much at this stage, as we can always revert to cyberknife at a later stage?
- If not opting for cyberknife at this stage, do I risk the lesion growing too large for cyberknife treatment further down the line?

I hope you are all coping well and thank you for sharing your thoughts.


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miaka618's picture
Replies 4
Last reply 9/10/2016 - 11:14pm

Hey all. I have been a relatively quiet observer of this forum since I was diagnosed back in March. My primary was on my right temple. I had a wide local excision and a sentinel node biopsy, 3 nodes coming back positive, and a neck dissection, all coming back negative. We discussed my next step and decided to go up to Madison to the UW Madison Carbone Cancer Center for a clinical trial.

My first sign of trouble was when I drove up there to get an MRI and a pet scan, 2 hour drive. I get there I was told there was none scheduled for me even though I had a letter in my hand with all of the appointment info. After some calling around it was discovered that my insurance company wasn't going to cover the scans so they canceled them but forgot to inform me. I ended up getting the scans locally and everything seems honky dory for me to start the trial. I get randomized and find out I was put in the ipi arm of the trial. Now at this point I assumed I would have to receive my infusions locally because of the insurance thing but they informed me that I was pre-approved and could get my infusions at the UW hospital. Cool. Fast forward 3 weeks to my second scheduled infusion. (yesterday) I get there and do all the normal appointment stuff and head to the chemo room. My cancer coordinator grabs me and says the doctor wants to see me again. I sit down in his office and he informs me that I have a $270,000 bill because the insurance was not covering my care at the hospital and he had to cancel my infusion to prevent more unnecessary charges. I was floored by this. I guess what had happened was when they called to get approval they called the wrong insurance and instead of looking up my information, the insurance company told them there was no prior authorisation necessary for this particular treatment.... Sheesh...

I am told they are working with my insurance company and my primary care doctor to try to work this out, but that is a hell of an expensive mistake. Is this my fault for not calling the insurance company to make sure I was approved? I have no idea what I need to do to fix this and there is absolutely no way I can pay it. If I would have skipped the trial, I wouldn't even be here, but nobody is psychic. I'm at a loss.


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Patrick O.'s picture
Replies 8
Last reply 9/10/2016 - 7:15pm

Hello all my fellow warriors.

Looking for a little advice. I'm Braf positive and looks like the beast is past the groin lymph nodes and possibly in the lungs (had a lung biopsy on 9/2). Am seeing Dr. Mark Albertini at The Carbone cancer center at the UW Madison campus tomorrow to review those results.

He gave me 3 different choices to think about if the lung biopsy comes back melanoma.

1. Pembrolizumab (keytruda)
2. The Ipi/nivo combo
3. A trial with one arm being the Ipi/nivo combo.
And the other arm being Ipi/nivo/gm-csf(sargramostim).

I've never had any kind of treatments.
Unknown primary also.
Thanks for any advice! This board and all of you have been a blessing to me being newly diagnosed back in July.

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JoshF's picture
Replies 16
Last reply 9/10/2016 - 10:21am

Well the initial read from oncologist wasn't the best and wasn't the worst. No immune hepatitis. She said tumor flare is causing issue with enzymes. Didn't real see any significant disease other than what's in guess looking was over a dozen tumors, mostly small but more in there nonetheless. She was happy that there wasn't immune hepatitis because that most likely puts me out of trial. Bad thing is liver enzymes haven't changed. I'm assuming ipi failed...supposed to leave Wednesday for MDA...not a lot of time. Thanks for all the support!


Let's work for better treatments....for a cure!!!!

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Anyone have issues with elevated creatine kinase, total, serum levels while on taf/mek combo?



Do not fear tomorrow, God is already there.

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Replies by: kylez, Mikers, Bubbles


last MRI revealed accumulating of contrast matter along whole spinal cord i.e. leptomeningeal progression (after multiply brain mets). Some small lesions are also stand out from background. 
I know that there are not to many positive stories on dealing with this stage but maybe someone can share experience or link to possible clinical trial? (Europe is preferable)
Thank you!

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Travis G.'s picture
Replies 9
Last reply 9/9/2016 - 10:44am
Replies by: Anonymous, RaquelP, Travis G., Aaron, laulamb, jennunicorn

I was recently diagnosed with melanoma. I had a WLE and SNB on 8/24/16. A week later I was told that out of the 4 nodes they removed that 3 were negative and 1 was positive for only microscopic isolated tumor cells. I was told that I was Stage 3 but that her recommendation for now was just to observe because the CLND and the other treatments were too harmful for just this small amount of cells. I have a CT scan scheduled in two weeks and am nervous about the results. Is the SNB a relaible way of staging or could the CT scan show more? The doctor does not seem to think anything will show on the scan but I'm not so sure. I feel perfectly fine but they tell me that doesn't mean anything. Any advice? Thanks.

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stotes's picture
Replies 4
Last reply 9/9/2016 - 9:36am
Replies by: Anonymous, Polymath, stotes

Has anyone progressed from Stage lllC to Stage lV while taking Yervoy in the adjuvant setting?  I have taken three doses of Uervoy at 3mg/kg at this point.  Wondering if anyone has had a similar experience and what you did as your next step for treatment?  I've now received three different recommendations from three different Oncologists.  Thanks!  Christal 

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Bubbles's picture
Replies 4
Last reply 9/8/2016 - 4:27pm
Replies by: Bubbles, Mat, Polymath

I put up a post that covers Dr. Daud's review of ASCO 2016 immunology updates.  The source is a prIME Oncology CME offering.  I included a link in my post and I think you should be able to log-in on the site to see it for yourself.  However, I put up a few of the slides and basic points on my post in case you cannot.  If you are interested:

Wishing each of you well.  Celeste

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JoshF's picture
Replies 23
Last reply 9/8/2016 - 2:00pm

Hi everyone-

Just wanted to give an update. So after fevers wouldn't relent, my onc did more blood work and blood cultures. Blood work showed elevated liver enzymes. Though she said not horrible, there was significant increase in AST, ALT and Alklaine Phosphate. Also slight decrease in urea nitrogen but didn't appear to be overly significant. LDH shot up to 423 which has typically hovered around 170-200. Follow up blood test showed decrease in 323. AST went down a bit while ALT stayed the same and Alkaline Phosphate went up. I'm not quite sure what all this means but I know it's not good. She said its either the disease or yervoy(immune hepatitis). So another set of blood work tomorrow and abdomen CT. I'm scared to say the least.These numbers keep me out of Adoptive Cell trial at MDA. I have to hope it immune system and I'm trying to be positive but I'm struggling. Constant disappointment. Not to mention that a new plan will need to be figured out. I have TIL product which I'm so grateful for but I have to get in line so there's a wait there...what to do in the interim. Any suggestions? Heard about s trial at Duke. Just feel a sense of urgency. MDA trial finish line is within steps.....


Let's work for better treatments....for a cure!!!!

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lyfsajurny's picture
Replies 8
Last reply 9/8/2016 - 4:47am
Replies by: debwray, lyfsajurny, Polymath, Patina, Anonymous

Ear ache last september. Tubes in ears etc etc for "ear infection". Ultimately had ear surgery to remove "rarley malignant" growth. Found malignant melanoma. Apparently I am a freak of nature as after numerous tests, poking and prodding,,,,,the melanoma in my ear is the primary tumor. Will start Radiation in a few weeks and am a little wierded out. Would love to talk to anyone else in same situation!

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MoiraM's picture
Replies 9
Last reply 9/8/2016 - 2:39am
Replies by: MoiraM, Mark_DC, Amanda, tschmith, debwray, Anonymous

This is mostly me venting. As will be clear from the vent, I cannot speak my mind at the moment to my husband. Also, the friend I had chosen to be my 'buddy' to talk to has developend breast cancer and is in the middle of chemotherapy.

I know I am by far not the worst off person here. I have a trio of related issues.

(1) I have 'unresectable' stage 3C melanoma, which responded to Ipi/Yervoy. I have been told if the melanoma does not begin progressing again within 3 years then it probably won't progress for 10. I am only at 1 year 3 months. I had by latest CT scan a week ago and I see the melanoma team next week.

(2) The Ipi took out my anterior piuitary gland. It almost certainly permanent. I take replacement thyroxine and prenidolone to replace the missing cortisol. I have spent a year trying to get the dosage low enough to satisfy my doctors and finally refused to cut my predniolone dose any more. I tire easily. My tolerance for stress has vanished. My gut had not been the same since my second infusion of Ipi.

(3) I am 'morbidly' phobic of doctors and hospitals. I went through CAT (cognitive analysis therapy) and EMDR (eye movement desensitization and reprocessing) to try to reduce the phobia to the level where I can have treatment. I was reluctant to agree to therapy. It has changed my emotional responses, which my psychologist thought was a good thing but I am not comfortable with it.

My job, which was very, very important to me, is no longer enjoyable. I already only work part time. Because I tire easily and have less capacity for stress, I have had to modify what I do at work. Much of what I enjoyed has gone. What is left is a series of difficult to resolve problems I can tackle from the office while I watch other people do what I used to love doing. To be honest, they do not do it as well as I did.

I took 6 weeks' leave over the summer. I continued working to get the dosages of the replacement hormones right. I tried to get fitter. I found a new psychologist (paying this time, the previous ones were paid for by the NHS - I am in the UK).

I had a great time. I felt much better.

I have been back at work for two days and it could be seven weeks ago. I am tired, stressed and unhappy.

My new psychologist encouraged me to follow up the possibility of giving up work.

In my heart I always believe that we could afford it if I wanted to give up work. My husband would be fine with it. I would lose my life insurance (yes, I have checked) and my pension would be damaged badly (there again, will I need it?), but surely day-to-day quality of life is paramount.

Well today I bit the bullet and analysed our finances.

It was a nasty shock. I had not realised how expensive being unwell had been. Over the past 12 months, we not only have spent every penny we earn but another £8500. That wasn't a problem, we had the savings to cover it, but if I give up work we will have to cut out 35% of our current expenditure.

So I am sitting here imagining what it would be like. We are not a high-spending couple. We don't drink. We don't go on holidays. We only have one car between us. We would have to watch every penny.

My husband has always been the one who worries about money. Now he is saying things like 'We'll cope, I want you to be happier." when I know the prospect horrifies him.

It horrifies me.

So the idea of analysing our finances to open up the possibility of me leaving work has backfired badly.

I know I am not too ill to work. I can carry on. They will not fire me. I will continue to be paid for doing the least enjoyable parts of my old job to a lower standard than I am comfortable with. I will feel conpletely drained every work day and, usually, for one other day for every working day.

One of my friends is chronically ill. He just shrugs and says that's what it is like.

If I had the energy, I would find a large cardboard box and kick it to smithereens.

Vent over.

Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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Aaron's picture
Replies 5
Last reply 9/7/2016 - 5:05pm
Replies by: Anonymous, Hukill, Bubbles, Casitas1, Aaron

Has anyone who has experienced pituitary problems or had ipi or nivo experience a change in taste?  It seems some foods have become more bland. Particularly pickled items. 

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BrianP's picture
Replies 1
Last reply 9/7/2016 - 2:16pm
Replies by: Julie in SoCal

This looks to have some worthwhile topics.  Free to stream live or attend in person (all though it looks like there might be a wait list to attend).

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