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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Hi All,

I have been struggling with some adverse reactions to pembro and had to stop my infusions.  I got some good advice from Celeste and also found this site which is being updated all the time and has lots of fairly easy to read information. Hope I am clever enough to attach the link...

My irAE's are pretty severe so it's interesting to see that they recommened going in hard early with steroids or other immune suppressors to prevent more severe toxicity later.


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geriakt's picture
Replies 5
Last reply 10/19/2015 - 5:23pm

Has anyone experienced lower back pain while taking Opdivo or Yervoy?


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davidstewart's picture
Replies 3
Last reply 10/19/2015 - 3:02pm

I was able to sign on the the extended access clinical trial for ipi-nivo for melanoma right before the FDA approved it. I'd like to get treatment closer to home but am wondering about Medicare approval of nivo. Each of these drugs has been independently approved by the FDA (and Medicare), can I assume that Medicare will cover the combo now that they have been FDA approved?



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Replies by: AnitaLoree, Patina

After 1 yr of apparent PFS on Keytruda, latest MRI shows probable enlargement of nasty mel remnant curled around my husband's cervical spinal cord. Oncs huddled & agreed likely new growth on tailend. No new neuro signs/symptoms---yet.

Only option is to switch to Opdivo/Yervoy combo, which we knew was down the road if.......   Only SE's on Keytruda: fatigue & itching. Didn't start w Ipi because initial tumor swelling common & no place to swell.  Now, out of options for his rare tumor location so will give it a run. (I'm silently) Very anxious re risk of swelling, husband calm, pragmatic.

Just reread Celeste's 9/27 post re: 'Sequential Nivo then Ipi w encouraging 41% ORR' that helped dry the tears (thank you C)

Will appreciate hearing from anyone who's done this switch, advice, encouragement (!!!)

(Husband is BRAF neg, s/p resection, radiation, tumor is non-biopsy-able, non-injectionable, Kaiser pt, but have very good Onc, on top of game, & had consult @ UCSF w Dr Daud---before starting Keytruda)

Blessings on you all, strength, and courage.  A.L.




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Hi all,

We're anticipating the FDA will approve TVEC for the treatment of advanced melanoma within the next few weeks. We were contacted by a reporter who is writing an article about the approval and would like to speak with a patient who has taken TVEC. If you have taken TVEC and would like to share your experience with the reporter, please contact me at His deadline is tomorrow, October 20, 2015.

Thank you,
Lauren - MRF

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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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Is anyone else getting messages that say you are blocked from making comments or a post?  I am now getting this message after changes were made over the weekend.

If you are getting blocked or your responses or posts are missing tell MRF about it please.

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msitz's picture
Replies 2
Last reply 10/18/2015 - 7:01pm
Replies by: Patina, Polymath

Part 1 of the story is here:

We just got some very exciting scan results back. In brief, my dad was diagnosed with Stage 4 Melanoma in March of 2015 and had several near fatal complications before he started responding to Keytruda. He has tumours in his abdomen, lungs, lymph nodes and brain.

This is the result of his most recent CT abdomen/pelvis:

"There has been interval significant disease improvement. Example - The largest left flank small bowel mass which previously measured 6.4x7.6cm now measure 3x4cm and a right lower quadrant and another small bowel mass which previously measured 3.7x4cm is now not definitely visualized. Left flank peritoneal nodule which previously measured 4.2x4.4cm is not definitely visualized."

That means that his biggest tumour is about half of what it was and the 2nd and 3rd largest tumours are gone! There were several other small tumours that have all significantly shrunk too. In March my father was given 2 months to live and now his tumours are 70% gone. His quality of life is excellent and he is planning a trip to South America for next year.

We could not be more thankful. There is hope to those of you with a stage 4 diagnosis with a very high tumour burden. His lung tumours are also responding very well, as is his brain tumour. Since starting Keytruda 7 months ago there have been no new tumours and everything has shrunk.

- msitz

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Anonymous's picture
Replies 15
Last reply 10/18/2015 - 3:46pm

Hi, I'm new to this. My husband has just recently been diagnosed with melanoma stage four. He has 4 lesions on his brain. I am looking for survivors of this. He is only 50. We have 3 small children, 1-8. Please good or bad I want to know if anyone had mets on their brain.

Greg and Elisabeth 

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Adam-MRF's picture
Replies 11
Last reply 10/17/2015 - 9:53pm

Hi everyone,

In recent weeks we implemented significant updates to the software that monitors for spam posts on the MPIP forum. You may have noticed some of these changes on the user registration and sign in page, while others took place behind the scenes on the back end of the website. Part of the update was the addition of a new, very powerful spam filter that will continue to improve with time. With the new filter in place you may, for a short period, notice a delay in when new posts appear as the software "learns" and refines itself. We will continue to monitor this process to minimize any disruption and smooth the transition to the improved system. We thank you for your patience and your feeback is always welcome as we work to ensure the best and most helpful experience possible.


Adam - MRF



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Debbieamccoy's picture
Replies 5
Last reply 10/17/2015 - 9:42pm

Got my first dose of Yeryoy and opidivo today . My hdl rose 2000 points since Keytruda and my ast is in the 600 but my bili took a big drop, my doc said my labs looked better so I guess he's not concerned about the other numbers he's encouraged by my appetite and lack of n/v. So I'm hanging in there and hoping for the best. 

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Wanted to let everyone know that it looks like a ton of responses were approved by the moderator this morning.  As far as I can tell new topics and comments from as far back as last Monday or Tuesday are now visible.

If you posted a new topic or replied to one you should check to see if it is now visible. If it is NOT go here and reply to Adam's post to let him know..  - You might also let him know about any other issues you experienced. 

To bypass this moderation phase you can write your response, copy it and then send a email directly to the poster if they are a registered user and the post is not Anonymous. To do this click on the persons user name and then click the "Contact" tab.  As long as the person is set up to receive emails they should be able to receive your response without having to wait for a moderator to approve your message.

Good luck!

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casagrayson's picture
Replies 2
Last reply 10/17/2015 - 11:49am
Replies by: CHD, Patina

Are all posts going to be moderated from now on?  I realize that is a way to keep out spam, but it is also slowing down comment times.  Nothing new on the board for 24 hours?  Also, I made a post but it never made it to the board.  

Strength and Courage,


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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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Cynthia C's picture
Replies 1
Last reply 10/17/2015 - 12:51am
Replies by: Patina

How do you reply to a post?

I tried but got blocked as spam for no reason.


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