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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Josh's picture
Replies 5
Last reply 2/17/2015 - 12:11pm
Replies by: Anonymous, john243, Mat, kpcollins31

Hello All,

So I've recently become one of the unfortunate few who get perhaps the ickiest Yervoy side effect: colitis. Without going into too much detail, I've essentially been pooping blood for a month straight and have lost 20 pounds (I started at 150 pounds, so this is a lot to lose). I've had 3 doses of Remicade (infliximab), and am currently at 50 mgs of prednisone (down from 80mgs), and 9mgs of Budesonide. Haven't had a dose of Yervoy in over 6 weeks. Has anyone else experienced this, or does anyone have any advice as to how to stop spending my days and nights in the bathroom. It's kinda cold in there and one can only watch YouTube food videos in a cold bathroom on an iPhone for so long :-)


Thanks a lot!



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yazziemac's picture
Replies 6
Last reply 2/9/2015 - 8:06am


My husband, Pete, has Stage 4 melanoma but has been NED since a craniotomy and gamma knife radiation late last year.  His oncologist has suggested a PET scan to monitor him and we're unfamiliar with this process.  Could someone please tell me what is the general process is if something lights up in the PET scan?  Is the next step generally a biopsy?  I would just like to know what to expect.  Thanks in advance,


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buffcody's picture
Replies 4
Last reply 2/8/2015 - 6:39pm

I just got a detailed endoscopic procedure yesterday to answer the mystery of a growth/lesion that has been getting bigger over the last few months in the area of the pancreas and duodenum. The experienced doctor who did the scope reported after the procedure that it was located in the duodenum and was metastatic melanoma.  My first metastatic diagnois was in early 2012.  Since then, I have had brain radiation and a lung lobectomy as well as two craniotomies.  The new metastasis is the only sign of cancer in my body now.  I will be meeting with my oncologist about this soon, but I am interested in hearing from anyone who has had metastasis to the duodenum and what the treatment has been.  I have not yet had anti-PD 1.  Based on the pre-scope conversation with my oncologist, I presume he will be recommending a course of Keytruda.  He also wanted to explore surgery, but the gastroenterologist wsa pessimistic about that course for a variety of reasons foremost probably my age, though I do have excellent performance status.  Thank you.



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Jacqueh27's picture
Replies 21
Last reply 2/8/2015 - 6:41pm

I am so encouraged. First, the LDH sure  was a good marker that her liver tumor burden was lessening. First four week scan shows a huge hole in tumor and is down by 4cm. She is totally out of pain and it has not spread to any other organs, not even brain. She will have Pet scan done in 9 weeks to see what's left and we will discuss surgery. They aren't even talking any other meds now! I'm so encouraged and am so happy I found this support forum. 

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New drug to be trialled on melanoma patients in world first on-melanoma-patients-in-world-first/story- 


IN a world-first, a drug will be trialled on Victorian patients with melanoma so advanced it has spread to their brain.

The principal investigator, Associate Professor Georgina Long, of the MIA Poche Centre, said this was the first trial of immunotherapy treatment nivolumab on patients with melanoma in their brain.

I'm me, not a statistic. Praying to not be one for years yet.

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arthurjedi007's picture
Replies 7
Last reply 2/6/2015 - 6:06am

Dunno if anyone has had this and more importantly something that helped with it.

For about a week it hurts every time I swallow. It's like the top left part of I guess the Adams apple part or whatever is the swallow part about the size of the end of my little finger just hurts every time I swallow. You would think with all my other more serious issues I got going on this would be nothing but it is the one driving me crazy.

I assume it was caused by the radiation because they were right next to my throat like less than a eighth inch. I thought it would have started getting better by now because they ended radiation to that area almost a week ago.

Sorry to bother with such a minor problem.


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newmanmark's picture
Replies 4
Last reply 2/5/2015 - 4:01pm


I live in Toronto, Canada and I have stage 4 melanoma.  I have a single tumor on my pancreas that measures 8cm in length.  I have been dealing with it since 2012.  So far it has not spread beyond the pancreas but it continues to grow and will soon cause problems.  I did Interferon for 7 months in 2010 when I was first diagnosed.

The options for me in Canada are;

1.  BRAF - I am BRAF positive (Vemurafinib or Debrafinib)

2.  Ipilimumab

3.  Clinica Trial - includes a BRAF and a MEK Inhibitor

If I fail on a BRAF and Ipilimumab then I qualify for Anti-PD1 under compassionate use.  It is not yet approved in Canada.

The other option would be to look for a clinical trial with Anti-PD1 in the US.  I am looking for some informed opinions on how I should proceed.  Also, if anyone knows of recruiting clinical trials in the US I would be interested.

Thank you


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Hi, I have been doing a lot of looking on this site and the web to get a better understanding of Radiation Necrosis vs Melanoma issues. I am much appreciative of the great info shared by other warriors in this battle. JoeyB had some really helpful info on RN that I thought I was going through. Hoping to hear his recovery is underway. My situation just took a different direction today after meetings at MSK in NYC.  Since my stage 4 diagnosis in zag 2011- two Yervoy series of 4 infusions, a bunch of SRS radiation sessions and a tumors removed from lower left lung lobe in August '11 and then the temporal lobe in Sept '13  was feeling pretty darned optimistic that I had the beast beaten back. Perhaps I am overly optimistic or just fooling myself but it's just the way I try to roll in life in general. My last SRS in June 2014 for a new tumor on the brain dura seemed like the SRS worked as of my Nov 2014 scan. Shortly after my clear Dec '14 body scan I began getting dull headaches which progressed to more painful ones signaling something was amiss.  I went in on Jan 27th for a brain MRI scan and Drs alerted me that it appears that the radiation necrosis call made in Nov was in fact more likely a melanoma  recurrence and they jointly decided ( my onc, radiation onc and surgeon) that given my tumors resistance to the usually effective SRS they want to get aggressive and remove it..  

I am bummed a bit that this isn't just some delayed radiation related swelling that steroids couldn't just solve but glad that they are deciding to get aggressive and go for a surgical solution. My recovery from the first craniotomy was really good so I am hopeful that the second time around is as fast. I am scheduled to get my surgery on Feb 10th.  Guess I'll be sitting down with the kids (16 and 14) and gingerly walking them through an edited version of what's going to happen. They were only 13 and 11 when I had the first brain surgery so I just told them I had a pressure spot I needed to get removed and I was hoping this would all just go away. I didn't want to scare them that young but I think I'd be remiss if I didn't give them better direction this go round.  Any suggestions on that discussion would be welcome. 

I guess this recurrence means my hopes of being a Yervoy responder might be out the window? Maybe so but I got lots of fight left in me to figure out my plan of action. Hopefully next weeks surgery buys me lots of time( forever hopefully) to think this through. 

Best of luck to everybody as we all face our respective challenges! 

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Anonymous's picture
Replies 2
Last reply 2/4/2015 - 12:29pm
Replies by: Anonymous, arthurjedi007

Does POW post anymore, always gave such great advice especially to newcomers, haven't seen anything in a while

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Anonymous's picture
Replies 0

Taking place under the tagline “Not beyond us,” World Cancer Day 2015 takes a positive and proactive approach to the fight against cancer. The day raises awareness and highlights that solutions do exist across the continuum of cancer, and that they are within our reach.

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Study on IL2 and radiation of the primary melanoma site:


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Gene_S's picture
Replies 1
Last reply 2/3/2015 - 6:25am
Replies by: Bubbles
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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cbe's picture
Replies 4
Last reply 2/4/2015 - 2:25pm

I want to share my husband's experience because I've seen questions about this and I think I even posted a similar question once. After being diagnosed stage 3C, NRAS positive, he went on ippy (Yervoy) and after just 3 months it metasticized to the liver. At that point he stopped ippy and went on PD-1 (Keytruda). He had many symptoms come and go-- extreme fatigue, nausea, itchy skin, metalic taste, GERD, fevers, night sweats --it was hard to sort out whether these were side effects of the Keytruda, the prednizone that was presribed to deal with the symptoms, or the cancer. After 6 doses of Keytruda, scans showed that the liver lesions had increased. Fortunately, we got him into the TIL program at NIH which meant that he needed to stop Keytruda and all steroids. He went through the surgery at NIH to harvest the lymphocytes from his lymph nodes, but right before starting the second part (chemo) they did scans and lo and behold they showed that his liver lesions had decreased significantly. This was now nearly 2 months after being off Keytruda and a month after scans had showed no change. They sent him home from NIH, since his immune system was fighting the cancer on its own. No one can really provide an explanation, but it seems that maybe Keytruda can have a delayed response, or going off it may have triggered something.

I hope this is helpful to all who are out there waiting and questioning whether its working. Sometimes you have to make hard decisions--we made the decision to stop Keytruda and pursue TIL rather than risk further progression, but it seems it may have been working after all. Also the inflammation seems to have really flared up around the 6th dose right before it started working--that's when he had the scans and felt the worst. We know this fight is far from over but are now very hopeful to finally see shrinkage. 

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vince1962's picture
Replies 1
Last reply 2/3/2015 - 9:49am
Replies by: kpcollins31

Well got my scan results and well I knew about the lymph nodes under my right arm cause they are the size of a golf ball but it shows activity in the left pectoral area and also in the right side of my back, left axillary and left subpectoral nodes are also suspicious! 9mm cutaneous nodule mid right back worrisome for malignancy, could represent primary lesion. So my question is I need some input!! what do you guys think?

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Nell's picture
Replies 11
Last reply 2/4/2015 - 2:08pm

Just checking up on you.   How is the swallowing?  Looking for an update.....Blessings.

One voice can make a song; one life can change the world.

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