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

Hello,

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

Mark

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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
Anonymous
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
Anonymous
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:

http://clincancerres.aacrjournals.org/content/early/2014/12/31/1078-0432...

 

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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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Nan in Nebraska's picture
Replies 2
Last reply 2/2/2015 - 2:38pm
Replies by: Anonymous, Marianne quinn

You'd think I'd be old hat at this, BUT........I just started my 3rd course of Yervoy. The first was in clinical trial, and the last after FDA approval. My second course I developed pretty severe diarrhea after my 3rd infusion and was put on high dose steriods and was able to finish the 4th dose. Given that I had 33 months of stability on Yervoy, and I have metastatic ocular melanoma, which does not usually respond as well as cutaneous does to certain drugs, it was recommended to do the 3rd course of Yervoy. It seems to me that I remember someone saying something about Entocort for diarrhea and that it stopped it quickly. Please let me know what has worked for you.

 

Thanks,

Nan

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Anonymous's picture
Anonymous
Replies 0

I have not heard from him for a long time. I hope he is well.

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Jsneathen21's picture
Replies 9
Last reply 2/3/2015 - 12:09am
Replies by: _Paul_, Jsneathen21, SABKLYN

Do any of you have advice on what I can do for my donor site ?!  It's on my lower stomach i want to scratch it up soooooooo bad:( any remedies you suggest?

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Eileensulliv's picture
Replies 5
Last reply 2/6/2015 - 10:07pm

Just wondering if anyone had yervoy and Nivulmab at the same time? Wondering what to expect, from a patient's perspective. I am to start a trial at Hopkins administering both concurrently... Assuming my brain MRI has no signs of cancer. That will be done Tuesday, and then surgery Thursday to remove the tumor in my back. I have read the consent form for the trial, and know of the possible side effects, but just thought I'd look for a patient's perspective. Thank you!

Eileen 

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vince1962's picture
Replies 2
Last reply 1/31/2015 - 12:14am
Replies by: vince1962, Bubbles

What treatment is available for BRAF negitive! 

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Linny's picture
Replies 2
Last reply 2/3/2015 - 10:46pm
Replies by: Anonymous, DZnDef
Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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