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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Christine.P's picture
Replies 8
Last reply 11/2/2015 - 7:35pm

Many people have posted here about the rash and itching that comes from the Opdivo/Yervoy treatment. Any advice on brands of lotions and soap/body wash that can help?  I start my treatment Monday and would like to have a few remedies in place in case I need something to tide me over until the docs can get me a prescription, etc. 

Any other tips on side effect relief will be greatly appreciated as well...

Thank you!


Christine P. 

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JoshF's picture
Replies 20
Last reply 11/2/2015 - 10:03pm

Don't have path in front of me but got call earlier from derm. Approx. a 4mm well circuscribed nodlue of melanoma. Stained positive for Melan-A, negative for HMB-45....doesn't appear to be a lymphnode. Lymphocytes present....whatever that means. But basiclly said it's a sub-q metastatic leison. He sent path to oncologist. I'm seeing  oncologist tomorrow....don't think I'll be doing scan tomorrow but I know the drill....just hoping it's just a dermal leison and hasn't spread anywhere else since I had last PET 3 months ago....

This shit is unreal...



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

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Anonymous's picture
Replies 4
Last reply 10/29/2015 - 3:55pm
Replies by: Jubes, Anonymous, blessd4x, Bubbles

I stated before in a past blog that my husband had a very bad mass (not primary location Im told) removed from his arm in August.  So bad, in fact, they had to classify as a stage IV.  It didnt, however, spread to his lymph nodes or show in any scans anywhere else.  It does not follow the standard definition of a IV, but Im also told this happens in about 3% of cases like his. 

They did a brain scan MRI last week, not sure the results until next week.  He's had a cough for over a month.  He doesnt smoke.  He's very weak, tired and sick.  In the 10 years Ive known him Ive only seen him sick one time years ago.  Now hes been sick with fevers, chills, lethargic and this cough.  Says he feels like something is in his lungs.

Now they want him to start immunotherapy with Opdivo.  Why?  Why are they telling us they got this huge nasty mass, margins clear, calling him a Stage IV, saying things look good, but ramping up treatments, additional MRI's?  When I read on this Opdivo, it seems for late stage, nothing else will work treatment. 

I assume they thing he has cells floating around and they want to be proactive and kill it before it lands anywhere?  Im so confused.  Everyday he's weaker.  God, whats happening and Im feeling like we are not getting the whole truth on this.





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Hi Guys, just wanted to get this out there because I had a lot of trouble locating this information. I am currently receiving Opdivo and had severe diarrhea and stomach issues with it. My oncologist put me on steriods but everytime I came off the symptoms returned, until a nurse friend of mine suggested trying Immodium! It worked!!!! I take two immodium bascially every 24 hours, a third if needed, and I'm great! I can eat and drink anything I want and my oncologist is A-OKAY with this! 

Some background on me: I am Stage 3B, first diagnosed in Oct. 2014 with melanoma in my parotid gland (neck behind ear), I had the gland removed along with a neck dissection to remove all lymph nodes which came back clean. We did 25 rounds of radiation just to be sure. Thought we were in the clear when in April of 2015 I woke up with facial paralysis on the right side. ER doctors thought it was just Bells Palsy but because of my history did a CT just to be sure. Low and behold the melanoma had spread to my brain and was bleeding. A crainitomy later I was feeling great, slowly my smile came back and all was right with the world. I did one round of gamma knife radiation and flew off to London and Spain to celebrate! Once in Europe I became serisouly ill and couldn't eat or drink anything. I quickly lost weight and was getting sick all the time. I came back to the USA and underwent both a upper and lower endoscopy. They located a polyp and removed it and sent me home. After an uncomfortable 24 hours I went back to the ER where they found A LOT of air trapped in my chest and knew the perforated my bowel. With the fear of a colonostomy bag in my future a wonderful surgeon was able to repair my perforated bowel but also found several large tumors requiring him to remove 20 and 30 cm of my small and large instestines. I've since healed and had 10 treatments of Opdivo, with the only side effect being the diarrhea. At first it was 6,7,8,9,10 times a day, anytime I came off steriods. On the random advice of my friend in nursing school with no Oncolgy experience I took immodium and BAM! it worked! I really hope this helps some other people out there on Opdivo or Yervoy. From what my oncologist has said the diarrhea can be even worse on Yervoy. But perhaps the immodium can help just the same for any folks on that medication. Also one last piece of advice I prefer the CVS or Walmart brand gel caps, they are 1. cheaper (wooohooo!) and 2. the name brand dissolves in your mouth immediatly and it chokes you going down leaving a horrible taste in your mouth, so just a quick FYI there! Hope this helps someone else out there! 

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Tim--MRF's picture
Replies 1
Last reply 10/29/2015 - 7:57pm
Replies by: kylez

Fair warning--this will likely be a long post!

In the past three weeks or so the FDA has issued three approvals relevant to melanoma. This is great news, of course, but it does raise a number of questions. Iam not a doctor, but have some thoughts on these changes.

Ipi/Nivo:  First was approval of the combination of ipi plus nivo (also known as Yervoy and Opdivo) for Stage IV patients. Ipi was approved as monotherapy in 2011, and nivo was approved last year. Results of the combination were all the buzz at the big cancer meeting, ASCO, this past June. Response rates were over 50%--numbers unheard of in melanoma. But side effects were a major issue, with more than half of patients experiencing problems that led to ending or postponing therapy. Even patients who did not take the full course, though, seemed to have good response rates. A lot remains to be learned about these drugs, and how to make the combination as successful as possible. Still, this is the approach that seems to be the first option for many oncologists now.

T-Vec: This was approved earlier this week. It is a modified Herpes Simplex 1 Virus (HSV-1). HSV-1 is the virus that causes cold sores (and not the virus that is a sexually transmitted disease!). A virus is miniscule in relation to a human cell. This virus only has a few genes. One of those genes blocks the ability of normal human cells to fight off viral infection. In T-Vec, scientists have removed that gene so the virus can no longer infect normal cells. Cancer cells don't have that ability, so the virus can infect them. The virus sticks on the cell surface, opens a hole in the cell membrane, and injects its own genetic material into the cell. That material takes over the cell division functions of the cell and causes it to create more viruses. Ultimately so many viruses are created they burst open the cell, then go out to infect other cells. So, T-Vec preferentially kills cancer cells. But it does more. When the cells burst open the remnants of the cell create a debris field of antigens that sensitizes the immune system to other tumor cells. But T-Vec has one more trick up its sleeve. Remember the deleted gene? Scientists replaced that gene with a different gene that produces GM-CSF, a compound that stimulates the immune system. So T-Vec kills cancer cells, trains the immune system to find other cancer cells, and stimulates the immune system. Sounds great, but the results are somewhat less impressive. T-Vec must be injected in the lesion, and even then the response is mixed. It seems to work best in people with injectable lesions and low tumor burden. Having said that, it is likely to be a major player in the future. If you combine T-Vec with another immunotherapy the results look much better. This could be ipi, one of the anti-PD1 drugs, or even IL-2. Also, it may be possible to inject lesions inside the body (in the liver for example) using ultrasound or some other technology to guide the needle.

Ipi Adjuvant: Finally, today's announcement that the FDA approved ipi for use as adjuvant therapy. The data are clear that ipi reduces the likelihood of recurrence. Some problems exist with this study, though. First, the study did not compare ipi against interferon. This is because some of the sites were in Europe, where Interferon is almost never used. A new study is underway as a head to head of ipi vs. Interferon and that data will be important. Second, the study had a lot of side effects, and even some deaths, among the study group. Finally, (and this may be related to the above) the study was done at a much higher dosage of ipi than is now used for Stage IV treatment. Current approved therapy for Stage IV is at 3 mg per kg of body weight. This adjuvant study was done at 10 mg per kg of body weight. At the time the study was designed some researchers felt the higher dosage would give better results. Further work showed that the added benefit did not outweigh the added severity of side effects. The higher dose for adjuvant work has two issues. First, it may well be that using ipi in the adjuvant setting at the 3 mg/kg dose will result in fewer side effects. Second, because of government regulations, the company cannot discount the price for the higher dosage. They must maintain the same price structure on a $/mg basis regardless of the dosing. This will result in a price per infusion that is more than three times the cost of ipi used for Stage IV patients. The company knows this is not acceptable and so have initiated a novel program. Stage III patients who decide to take ipi to try to lower their risk of recurrence are encouraged to enroll in a special program. Once enrolled, all of their drug is completely free, regardless of financial situation or insurance coverage.  This is a bold step for the company to take, and hopefully everyone will get the information about this program before experiencing significant costs. The program only applies, though, to the approved dosage of 10 mgs/kg.

OK, that was a lot of information. I hope it helps clarify matters a bit. 





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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Replies by: jenny22, jamieth29, geriakt


Great news! This evening the FDA approved ipilimumab (Yervoy) as an adjuvant therapy for Stage III melanoma patients who have had their tumors removed through surgery.This is the first new adjuvant treatment in 20 years! The MRF issued a statement with more information, which you can read by following this link:


Lauren - MRF

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Christine.P's picture
Replies 6
Last reply 10/29/2015 - 11:39pm

I start my first dose of the combo on Monday and was just wondering how long the treatment takes. I've seen one person say the treatment is 2-1/2 hours long and wondered if that varies by person and dose or if that's pretty standard.

Also - are all four doses of the combo the same duration? I feel lucky that I get to try this new combo, but am also getting nervous. I know side effects vary quite a bit, but the waiting to see what will happen to ME is a little nerve-wracking. I try not to think about it most of the time, but it does creep into my thoughts. 

Thanks to all of you on this forum. I appreciate the honesty, candor, and support shown to everyone who posts. 

Christine P. 

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Anonymous's picture
Replies 3
Last reply 11/9/2015 - 11:06am
Replies by: Anonymous, CHD

Hi, just wanting to see if there is anyone out there with vulvar cutaneous melanoma?  I have seen posts from several with mucosal-type but wondering about cutaneous.  Would love to hear your stories and what you have been treated with, and how you are doing.  Thanks for sharing!


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On Thursday, November 5th, the MRF will host it's 3rd annual Wings of Hope for Melanoma gala in Philadelphia. 

Join the MRF and the Susan Fazio Foundation for Melanoma Research (co-host of the event) as we honor Christine L. Egan, M.D., Dermatology Ltd., Clinical Associate Professor of Dermatology, Perelman School of Medicine at the University of Pennsylvania, with the MRF's Humanitarian Award.  The MRF will present its Courage Award to Phyllis Schantz and Paul Skibinski* for their courageous battles with melanoma.

*Award accepted posthumously by Sarah Yeoman

The event will feature exquisite small plates, cocktails and one of the city's best views at the Downtown Club in Philadelphia. 

If you or a loved one are in the Philadelphia area, please join us.  Tickets are still available and directly benefit the MRF's mission to promote research, education and awareness of melanoma.  Purchase your tickets at:  Thank you.


Joe Fazio

MRF Board Member

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Hi All, 

In 3rd week of taf/mek combo. Having low fever (99-100), chills, dizzy and fatigue. Think I may call onc to report to see if there is something to ease the fever/chills occuring during day and night. Has been consistent the past 3 days/nights.  Currently can only treat with Tylenol because of meds I take for auto immune disease.

Trying to stay optimistic telling self meds are working which is why I'm having side effects! I'm worried he will lower dose which I dont want to do-I can manage, if I have to. Does that make sense?

Thanks for any input!

Do not fear tomorrow, God is already there.

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Debbieamccoy's picture
Replies 3
Last reply 11/2/2015 - 10:10am

I'm stage 4 with mets to liver getting yervoy and nivo second round next week. I want to plan a surprise trip to Disney for my children and grandchildren but afraid to plan ahead for April . So far I feel great except for nausea . Anybody with suggestions 

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braunerk's picture
Replies 10
Last reply 10/29/2015 - 10:48am

FDA approved Imlygic (t-Vec) today

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1derdog's picture
Replies 8
Last reply 11/2/2015 - 10:24am

My husband had two Keytruda infusions & his tumor near his pancreas increased. He had another four infusions & his scan showed stability, with a slight decrease & no spread anywhere else.  

My question is is this good progress after six treatments. His oncologist thinks the sweet spot for Keytruda to work is around 10 - 12.  I would appreciate any of your personal experiences and/or opinion.  

Thus board is a heaven sent.  

Thank you

caregiver (wife

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Anonymous's picture
Replies 4
Last reply 10/29/2015 - 11:29am

Has anyone heard from Janner lately?

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