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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Replies by: rbruce, Anonymous, awillett1991, NYKaren

hi, hope this isn't old...the date is today, but the data refers only to phase I test.  Also, it shows differences in response between 10 mg. and 2 mg. doses...last I read response rate was the same.  SO confusing!  Best--Karen. (interesting that they see it as a drawback that PhaseI trial has no chemo, and to us it's a huge plus!)

Published: July 11, 2013 Updated: 12:44 p.m.

Melanoma drug holding up well after further testing


Merck's late-stage melanoma drug, lambrolizumab, continues to show great promise in shrinking the deadly tumors, particularly when taken at the highest dosage offered in trials, according to a study published today in the New England Journal of Medicine.

At the end of 12 weeks, the intravenous drug had shrunk tumors in 52 percent of patients when administered every two weeks, at a dosage of 10 milligrams per kilogram of body weight. Even when a lower dosage, and more time in between dosages, were taken into account, the overall tumor-response rate was 38 percent.

In most patients who showed a positive response, the results lasted beyond one year. And a dozen patients showed a "complete response," meaning their cancer was gone altogether.

Considering that melanoma is the deadliest of the skin cancers, killing some 9,000 people each year, discussing survival in terms of years and not months has cancer specialists using words they had rarely ventured to use during the previous three decades of research into the disease.

"This is monumental," said Dr. Jack Jacoub, medical oncologist at the MemorialCare Cancer Institute at Orange Coast Memorial Medical Center in Fountain Valley, who was not involved in the research. "Things look much more optimistic for this disease."

In recent years, much of scientists' energy, and research funding, has been focused on using the body's immune system to fight invading cancer cells. An FDA-approved drug called ipilimumab (brand name Yervoy) acts like a brake on a protein called CTLA-4, allowing the body's own T cells to battle cancerous melanoma tumors. Alone, it has a response rate of 10.9 percent in trials, but when maker Bristol-Myers Squibb combined it with another drug, nivolumab, the response rate jumped to 41 percent, according to data released in May.

Lambrolizumab, which used to be called MK-3475, puts the brakes on a different protein, PD-1, the same one nivolumab works on.

"Most patients think their immune system is weak and wonder why cancer is growing," said Dr. Bartosz Chmielowski, an oncologist at Ronald Reagan UCLA Medical Center who was a co-investigator for the study. "They say, 'I just want to boost my immune system.' Usually, it's not true. It's not that the immune system is weak; the cancer has found a way around the immune system.

"These results are extremely exciting and encouraging."

A subgroup in the study had taken Yervoy previously, with no improvement; in this study, they enjoyed the same response as other patients.

The most common side effects of the drug were fatigue, rash and diarrhea, but they were low-grade. One drawback of the study, which was funded by Merck, is that it was not randomized: There was no alternative therapy to compare the drug with, and no placebo.

Researchers are still seeking patients for a larger study, Chmielowski said, with a goal of enrolling 500. 

Don't Stop Believing

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NEHT2868's picture
Replies 5
Last reply 7/13/2013 - 12:52am
Replies by: DeniseK, Tina D, POW, Brendan, NYKaren

I had my scheduled brain MRI at Dana Farber this morning and i received great news from the radiation oncologist.... In his words "Remarkable". All of my lesions and tumors shrunk or disappeared! The doctors are not sure if it is due to the WBR that was completed in March, the 4 infusions of IPI that was completed in June or the 3+ weeks of Zelboraf that I am on now. 




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Cindy VT's picture
Replies 2
Last reply 7/13/2013 - 11:00pm
Replies by: NYKaren, Fen

Had a nasty bought of pericarditis and  ended up in the hospital.  When I first got this chronic disease, my family did some research on the net and found that this is sort of a side effect of the melanoma disease. 

Its good to be home.  I hope all of you are doing well, and getting on with life.


Cindy VT

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mama1960's picture
Replies 2
Last reply 7/11/2013 - 12:58pm
Replies by: mama1960, POW

Doc just told me he would like to start me on this in the next couple of days. Having trouble finding info, any hints?

It is what it is.

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Linda56's picture
Replies 10
Last reply 10/23/2013 - 2:18pm


I am new on this forum.  I'm taking Zelboraf now for about 11 months.

I would like to know if anyone has the following side effects with Zelboraf (this started about three months ago - my last scan was NED)

- extreme cold feeling with goose bumps (even when the weather is warm) 

- followed by heavy sweating within a few seconds

This happens about twenty times a day and also during the night which causes me a lot of sleepless nights.




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Tina D's picture
Replies 12
Last reply 7/14/2013 - 9:58pm

I went for my appt in Nashville and was super pleased with the Dr and staff there. As far as we can tell I will qualify for the Merck PD1 trial. Need to have brain MRI done first ( scheduled for the 17th) then the rest of the prescreening scans and labwork the following week if the brain MRI is negative. If all goes well, I will be entering the trial around the end of the month. Merck trial has 3 arms. One PD1 2mg, one PD1 10mg, one chemo ( investigators choice).  I will be randomized into one of the 3 arms. IF I were to be randomized into chemo arm, there is a crossover allowed after 12 weeks if mel progresses during that time. I am thankful for this option and anxious to get it started.

High point of my visit to Nashville was getting to meet fellow warrior, Amy, face to face!!  :D  

I will post as I go...

As always, trusting the Lord!


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blden2186's picture
Replies 2
Last reply 7/10/2013 - 3:54pm
Replies by: Tina D, mama1960

Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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josephsli's picture
Replies 5
Last reply 5/4/2017 - 5:46pm
Replies by: Anonymous, jessann, POW, josephsli, Janner


I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.




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LMonty's picture
Replies 3
Last reply 7/10/2013 - 4:18pm
Replies by: LesleyKS, Lauren6, Janner



I was hoping someone could help me figure out what my pathology report is saying about a mole I had biopsied. I actually have two pathology reports because it was sent for a second opinion. The mole is obviously atypical, but I'm not sure about what the rest is saying. To me, it sounds like the sample was too thin for them to be sure it isn't anything worse. The biopsy was a very thin shave. The mole is on my big toe next to my nail, so it is in a bit of a diffcult place.

I'm supposed to be having a Mohs surgery to get the rest of the mole. Does this sound like the right plan? I've read that Mohs is usually done for basal and squamous cells, and for an atypical mole I should be having an excision done, but I don't know if that will be possible because of where my mole is. My other option is to try to see a podiatrist surgeon, but I don't know if that would actually be a better option. I'm supposed to make an appointment soon, so I'd appreciate any help.


Pathology #1 says:

Atypical epidermal melanocytic hyperplasia - See Note

Note: Biopsy is very superficial and more severe process can not be excluded. Conservation re-excision with negative margin is recommended for the treatment and proper evaluation of the entire lesion.

Microscopic Description: Superficial biopsy of acral skin with increased number of atypical epidermal melanocytres with pagetoid spread.


Pathology #2 says:

Irritated lentignous melanocytic proliferation with modrate atypia, involving peripheral and deep histologic edges (see note)

Note: Complete removal is recommended for further evaluation and therapy. Multiple original and deeper step sections were examined.


Thanks again for any help anyone can give.


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vicuk's picture
Replies 3
Last reply 7/10/2013 - 3:56pm

Hello everybody.

I've got some very good news to post. My best pal Helen went for her scans Thursday and results came in today. Her lung mets are stable (they were immesurable last time) and her hip tumour has shrunk again. This time last year (almost to the day) she was hit with the news that she had MM stage iv and she had 6 months to live. She has been on the GSK trial since then and has no side effects.

I tell her all the time about the people on here that are fighting the good fight and I endlessly quote CharlieS. My job is to keep her positive at all costs and that I get from you. The community you/we've got here is so knowlegeable, supportive and caring.

Many, many thanks and I think of you warriors every day.

Vic x

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Tim--MRF's picture
Replies 2
Last reply 7/9/2013 - 12:27pm
Replies by: Tim--MRF, POW

GSK just submitted an application to the FDA for their two new melanoma drugs to be used in combination.  This is a BRAF inhibitor, dabrafenib, and a MEK inhibitor, trametinib.  Studies have shown that these drugs work better in combination than either do alone.  I think most people expected they would be prescribed in combination, but getting this approval, if it is approved, will help smooth conversations about off-label usage and reimbursement.


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flvermonter's picture
Replies 2
Last reply 7/8/2013 - 10:58pm
Replies by: flvermonter, POW


We met with a Medical Onc at Florida Cancer Specialists today.  He reviewed my husbands records and suggested he take taxol while getting his radiation.  The radiation is for the lung cancer and the melanoma.  He then said after the radiation is complete start on Yervoy.  That is unless the next petscan shows other spots.  In that case then would suggest he start on the yervoy instead.  His next PETscan is a week from Wednesday. 

Any thoughts or experience with receiving radiation and taking either taxol or yervoy?

Thanks, Mary

Hugs to all, patients and care givers.

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