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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jbronicki's picture
Replies 4
Last reply 7/13/2014 - 1:29am
Replies by: kylez, Linny, jbronicki

Hi,  My husband has a follow-up Ultrasound with Fine Needle Biopsy today along with CT scans.  Does anyone have any experience with this in their own treatment?  My husband had a WLE and SLNB in February on a 19 mm melanoma on his upper trunk.  There was no epidermal component so they couldn't truly stage him but the SLNB was negative and his scans were negative at this time and margins were clear.  I understand that they are looking for evidence of metastatic disease with this procedure but not sure if we get the results back immediately or if we have to wait, etc?

Thank you! 

Jackie (wife of John)

Jackie <3

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MixtaJones's picture
Replies 6
Last reply 7/14/2014 - 3:02pm
Replies by: awanning, LuckyMan51, Colleen66, Anonymous, RJoeyB

So I have my 4th infussion of Yervoy tomorrow and am excited but nervous at the same time. I am wondering what is going to happen next? I know I have to wait about a month to get another PET/CT to check how things are going. I have not had one since before surgery so I don't even really know what tumors were left from what the surgeon could not get.

What experience does everyone have after they finished ipi? I would like to believe that after 4 rounds of treatment the cancer is gone and I can start calling myself NED but that sounds pretty unrealistic. Do they do boasts of ipi or more rounds if it is not gone or even if it is gone? If it has spread do they concider the ipi a failure? What constitutes failing a treatment?

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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Tim--MRF's picture
Replies 6
Last reply 7/13/2014 - 10:20am
Replies by: Ed Williams, Anonymous, JoshF, RJoeyB, BrianP

I have a few more details about the Expanded Access Protocol for the combination of ipi and nivo.

The study has been approved by the FDA, which means it is posted on This starts the process of getting sites open. The company is looking first to sites that have experience with the combination as part of the clinical trial process. It will take at least a month, and more likely six to eight weeks to start putting people on the drug, but everyone is working fast to shorten that time.

The study is open to people with Stage IV or unresectable Stage III melanoma, and it includes mucosal melanoma. It does not include ocular (uveal) melanoma because not enough patients with OM have been treated with the combination to know that it works in that population.

BRAF status doesn't matter, and prior treatment with a BRAF inhibitor is allowed. Prior treatment with ipi is not allowed.

Brain metastases must be stable for two weeks.  This is actually great news, as the previous standard has been eight weeks. 

Because ipi is an approved drug it must be provided as a prescription medicine and covered by insurance or some other program.  Nivo will be provided free as part of the protocol.

So what does this mean? That is not entirely clear. Clinical trial data is based on a small group of patients, fewer than 100.  Toxicities were high, with 2/3 of patients having Grade 3 or 4 toxicities.  Toxicities, or side effects, are rated on a scale of 1 to 5, with 5 being death.  Doctors involved in the study say that many of these higher grade toxicities were due to liver enzymes being out of normal range. The patients felt OK and the liver issues were dealt with fairly easily. 

The results of this small study were very impressive. These patients were all in real trouble. They had experience as many as three prior systemic therapies and were now progressing again. Despite this, the dosage being used in the EAP had one and two year survival rates of 94 and 88 percent, respectively. Those numbers are very high.

Everyone in the field is watching this combination very carefully, with hopes that they strong results will hold up as the number of patients increase and as it is used in patients as their first therapy.






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BMS announced today that they'll be making their official application to the FDA for approval of their PD-1 checkpoint inhibitor nivolumab this fall.  Of lesser importance, they're going with the brand name Opdivo.  MarketWatch article here:

Bristol-Myers Squibb Announces Plans for Third Quarter Submission of a Biologics License Application for Opdivo®(nivolumab), an Investigational PD-1 Immune Checkpoint Inhibitor, for Previously Treated Advanced Melanoma

Interesting because many expected that BMS would wait until early 2015 to submit.  They'll be seeking approval similar to the way Merck's approval will likely come through and the EAP's are being constructed, namely that it will require prior failure with ipilimumab (Yervoy), and for BRAF-positive patients, prior BRAF-targeted therapy.  First-line approval would then come later once the final Phase III trials are completed.



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1derdog's picture
Replies 4
Last reply 7/18/2014 - 2:58am

My husbands has stage 4 melanoma in his lungs.  He has been on a clinical trial for 21 months now.  The tumor is increasing in size and now the doctor tells us he needs to get on a blood thinner (fragmin) because his arteries are clogging.  He said this is common in cancer patients.  Can anyone tell me if this is so wing they have either heard of or have experienced themselves.  I'm very concerned.  Can this be treated?

any suggestions would be very appreciated. 


Thank you 


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Hoping someone could possibly shed light on this phenomenon. My dad has had 3 doses of Yervoy thus far and and the subcutaneous tumor on his back (growing right on the WLE scar), started regressing quite noticeably right after the second dose (turned purple and shrank considerably). 2 weeks ago he began suffering from watery diarrhea and was put on a course of steroids for 1 week. During the course of steroids, the tumor started growing and reddening again. Could this be an "ipi flare" or could the steroids possibly have counteracted the effects of the Yervoy?

He has a doc appt tomorrow for his 4th and final dose of Yervoy now that he is off of the steroids, but we are freaking out about the re-growth after such a promising start to this treatment.

Any input is greatly appreciated. Thank you in advance!

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Anonymous's picture
Replies 0

How likely is it that melanoma would go to my groin lymph nodes?  My mole was on my mid back- the slnb was under my left arm.  The lymph node came back negative.   (So right now I am stage 1b).  I'm panicked that it will go to my groin lymph nodes.  Is that common? 

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My 7 year old daughter was diagnosed with Melanoma about 2 months ago.  It was a T1b.  She had a wide excision and a SLNB with 4 nodes removed.  They all came back clean.  So now the protocol is just to go in for skin checks every six months.  No scans.

But I am worried there might be something inside her that we don't know about.  I know it is a good sign that the nodes were clear, but I keep reading here about people who had no signs until a metastisis was later found in a remote area.

Should I ask for an MRI to check lungs / brain? (I don't want CT for her -- too much radiation at that tender age).  It isn't called for given the size of the tumor and the clear SLNB, but I feel helpless wondering if there is something growing that we don't know about.   

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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Tim--MRF's picture
Replies 10
Last reply 7/11/2014 - 6:59pm
Replies by: arthurjedi007, RJoeyB, Bubbles, BrianP, Anonymous

BMS has launched an Expanded Access Protocol for the combination of ipi and nivo, their anti-CTLA4 and anti-PD1 drugs. Earlier this year both Merck and BMS opened EAP programs for the PD1 drugs alone.

The combination of ipi and nivo has some very strong results. In one study, 88% of patients with metastatic melanoma were alive after two years. Side effects are a concern, with about 2/3 of paitents having Grade 3 or Grade 4 toxicities. The doctors involved with the study felt that these issues were rather easily managed.

This was just announced this morning, so no sites are open yet. As we have seen, sometimes these sites do take a while to open.  For more information you can go to the EAP posting on  

Some details:

--mucosal melanoma is included

--must not have had prior treatment with ipi

--brain mets are allowed, if MRI confirms no progression in 2 weeks

I hope to have more information soon, but in the interim here is the link to the posting:



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arthurjedi007's picture
Replies 1
Last reply 7/15/2014 - 12:51am
Replies by: lbkimball

I just learned this from my doc at Mayo.  Apparently all of us with this disease are at high risk for blood clots. To help during the 8+ hour drive he said to stop every 2 hours or so and walk for a minute. Apparently that's all it takes. He also said like on an airplane or even in the car to keep moving your feet.

I don't have blood clots but figured I should share this info to help us keep from having them.


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Credit goes to Rick who posted this article on MIF:

Some folks seem surprised by Japan acquiring the world's first regulatory approval for anti-Pd1....but the history of the drug tells the tale.  From a prior blog post.....

"Once upon a time (2005), in a land far, far away...(Japan), ONO Pharmaceutical generated ONO4538, an anti-PD1 monoclonal antibody, in research collaboration with Medarex (who called the product, MDX1106).  In 2009, the big, getting ever bigger, (? benevolent) King of the World, Bristol-Myers Squibb (BMS) acquired the rights to develop ONO4538/MDX1106/BMS936558  (now called Nivolumab) in North America.   In an additional agreement in 2011, BMS attained the rights to the product in the rest of the world...except Japan, Korea, and Taiwan...where ONO retained exclusive development rights and conducted Phase II studies with ONO4538 in non small cell lung cancer and melanoma and Phase III studies in renal cell carcinoma currently.  However, results of those studies are hard to find."

Hopefully FDA approval will not be far behind!  Thanks, Rick!  Celeste

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Outcome of isolated limb infusion (ILI) treatment for Chinese acral melanoma patients with/without gene mutations. --------------

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

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Anonymous's picture
Replies 1
Last reply 7/10/2014 - 2:39pm
Replies by: Anonymous

MRI, CT scans say no hypophisitis. Endocrinologist said that my adrenal insufficiency is not due to hypophisitis.  At a recent routine eye examination opthomologist told me that I have convergence insufficiency or palsy in binocular eye movement.  This explains headaches when I read.  How about the fact that the third cranial nerve, the ocular motor nerve crosses right behind the pituitary. Hypophisitis, anyone?   Eye doc doesn't want to go there yet.  I'm to do pencil push ups for 6 weeks to see if exercise can resolve this.  If it isn't one adverse reaction to Yervoy, it's another.  I know that adverse reaction(s) can mean that the Yervoy has stimulated my immune system even though I had only two 3 mg infusions. I just hope my immune system has gone after any melanoma cells in addition to just about everything else.


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Are they getting closer to learning who Interferon will help the most?  -   ------

Phase II randomized study of high-dose interferon alfa-2b (HDI) versus chemotherapy as adjuvant therapy in patients with resected mucosal melanoma.        -------------------

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

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RJoeyB's picture
Replies 2
Last reply 7/10/2014 - 7:05am
Replies by: RJoeyB, Bubbles

Exciting to see some activity in this area...

LUNGevity Foundation, Lung Cancer Research Foundation, and Melanoma Research Alliance join forces in first-ever research collaboration
Research into PD-1 Inhibitors to Benefit Patients with Brain Metastases

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