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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Janet Lee's picture
Replies 4
Last reply 7/22/2013 - 6:00pm

My husband, Don, was diagnosed Stage 4 in January, had radiation to his pelvic area, had Cyberknife on his first brain met, which then had to be surgically removed. He has a lot of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two new small brain lesions. But one month later, two more new brain lesions have showed up.

We decided this week to move to from Dana Farber (our oncologist very unexpectedly left there) to Mass General and Dr. Keith Flaherty, who we've heard a lot of good things about. 

Initial recommendations were to do WBR, but there are so many questions and concerns about WBR, and the trend seems to be more and more toward doing SRS whenever possible. There are many pieces to this problem-solving puzzle, such as timing, what if Ipi doesn't work, getting the brain stable for PD-1 trials, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions, and that is what we will probably do. 

My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don has had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

We are staying positive and optimistic but the nuances involved in fighting this disease are mind-boggling. Learning from the people on this forum has been a life-saver in more ways than one!

Janet

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Everymoment's picture
Replies 4
Last reply 7/22/2013 - 8:07am
Replies by: Everymoment, POW

Hi Everyone,
So the neurologist is stumped as to why I've had a stroke at 35. All the blood work keeps coming back fine for autoimmune diseases. I had a CT of my head and chest and it came back clear other then a small lung nodule that the radiologist said did not look suspicious. The MRI came back with a small stroke. Considering the doctors can't figure out why I've had a stroke isn't it time to do a PET scan? After my history of melanoma I think it would be warranted. Thoughts?
Thank you,
Isabell

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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

By LANDON HALL/ ORANGE COUNTY REGISTER

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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Everymoment's picture
Replies 3
Last reply 7/21/2013 - 4:00pm
Replies by: Everymoment, Janner

Hi,

So some of you may remember me from a while ago. I had vulvar melanoma stage II clear SNB (5 years ago). That was my 4th melanoma and according to the doctors nothing spread. Last PET was probably 5 years ago and it came back clear. I am now 35. I have had crazy symptoms over the past month and at it turns out I have had a stroke. They doctors have no idea why (I don't have a single red flag for stroke and there has been no stroke in my family) and they say that my symptoms don't match that of a stroke because I am having issues all over. My symptoms are dry mouth, dry eyes, disoriented which comes and goes, shortness of breath, burning in arms/pins and needles, when walking at times I can't tell where my feet are being placed, numbness on face (both sides), sometimes food/water tastes smells weird and the oddest thing is my toesnails have horizontal ridges. I have had an MRI of my brain which shows the stroke and an MRI of my spinal cord which shows nothing. I have had a CT scan of my head which showed a sinus infection and a CT of my chest which showed a very small nodule. I had a nodule about 7 years ago and it's probably the same one. No one was concerned about it.

So then I started reading. I read an article about a girl whose first sign that her melanoma spread was she had a stroke. Has anyone every heard of anything like this on this board?

Thanks,

Everymoment

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Josh's picture
Replies 26
Last reply 7/21/2013 - 3:50pm

Hello All,

 

I'm considering one the Dr. Rosenberg adoptive cell therapies offered at the NIH that probably many of us have heard about. Both my current oncologist at Sloan Kettering and my previous one at SDSU say that Rosenberg's adoptive cell therapy trials are the best clinical trials out there right now, however, I've noticed on this forum that other than Warren, nobody has good things to say about the longer-term benefits of these trials. To be clear, I haven't yet had the blood test to see if I qualify for one of these trials and I know that they offer many different trials, but Merk's anti pd-1 drug isn't working for me, so I need to decide on a next step. Considering that Dr. Rosenberg has been doing these trials for a very long time, I'm asking to hear from some long-term survivors or friends/families of long-term survivors. There are lots of anti pd-1 NED folks on this forum, but any Dr. Rosenberg NED's out there? If not, does anybody have opinions why my two great oncologists like these trials so much?  Thanks a lot, everyone!  

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/21/2013 - 3:26pm
Replies by: Linny

How are you doing Alana? Any new info? Does anyone know?

She posted a 1-1/2 to 2 months ago. Just curious what has happened since her initial consult.
Thanks

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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doriniel's picture
Replies 11
Last reply 7/21/2013 - 12:35pm

I am currently on zelboraf but I'm considering switching to yervoy. Is there anyone who has continued to work full time while on yervoy or are the side effects too much? Right nowIi am working two 12 hour days a week. I'm wondering if i can continue this if i go to yervoy infusions. 

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HopefulOne's picture
Replies 5
Last reply 7/21/2013 - 6:49am
Replies by: HopefulOne, Gene_S, hbecker

Hi all ... tomorrow (July 2) my husband starts ipilumumab. I'm hopeful yet incredibly nervous. I've detailed our journey in my profile but basically just over six weeks ago he had a melanoma tumor removed that was growing around his spinal cord and was also treated with radiation (as they couldn't remove the whole tumor). Just within the past day or two, he has been more like himself. Less pain though some fatigue and bowel issues from the radiation. Now we start the next phase of his treatment with his first infusion of Yervoy and I'm just so worried about how he'll react to it. I know nobody can predict this and I'm not sure the purpose of my post except to hear some encouraging words of support. I'm sorry - this is my first post though I've read many of your moving stories. I hope and pray that someday I'll be able to offer others on here the same support and a story of success that brings hope. Thanks. Kimberly

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JoshF's picture
Replies 2
Last reply 7/21/2013 - 1:04am
Replies by: Janner, Everymoment

I follow this board daily but don't post often. This has become a place of comfort and hope. I had my 3 month derm follow up yesterday and had 2 more moles each approx 5mm or less. Now the anxiety sets in which has been the worst part throughtout my 2 years of dealing with melanoma even thopugh I'm currently NED and pray to stay that way. I never had or dr.'s never found a primary. They think there is still a chance that there was no epidermal component but that is a whole other story. Question is...with the 2 moles I just had removed that makes a total of 10 with about 4 of them being atypical dysplastic nevi. If these 2 are as derm thinks they will be...that makes 6 out of 10. When do you fall into dysplastic nevus syndrome? I have a fair amount of moles but I don't think I have A LOT of moles. A friend said I should find a derm with a dermascope as this provides better detection of melanoma. Anyone have any insight or experience with this?

 

Thanks

 

Josh

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

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Hi one and all. I jhave not been on the boards for a while.  So since Last May, we switched from local treatment (Tucson, AZ) for Harry's stage 3C melanoma on his leg, to John Wayne Cancer Center in Santa Monica. We were always seeking a vadcine journey, rather than simply treatment. Harry's ILI produced zero results, though it is supposed to work on 60% of people. We looked for vaccines. We found that JWCC was proceeding with BCG trials.

Since it is not a new drug, all who participate get the real BCG no possibility of placebo. He has been treated with it since April 10. This is given initially as shots in the body, followed by direct injections into the leasons.  There was no way of telling success or failure Except that last June when he went they found only 3 new tiny, tiny ones. IN May they found 11 new ones All got injected. He just went back last Monday Dr.Faries decided to take 2 biosies from previously treated leasons. ON Friday we got the news BOTH showed no evidence of any melanoma. 

Needless to say we are extatic and hopeful, and grateful. I wanted to share this great news with all of you, and encourage to always reearch every where for what is available.

We love JWWC. Great doctors and great care. The great thing about the BCG is the minimum side effects- primarily being tired. Secondly, since it is not a new drug, it is not expensive, and insurance people are all too glad to OK it.

I am not sure how many places offer BCG as a treatment for melanoma. I know that BCG is highly effective also in bladder cancer and it is just starting to be used for that cancer here in Tucson.

I hope that all of you fighting this desease or taking care of some one who is in the fight, will be blessed with good news and outcomes.

The one great thing we can all rejoyce about,is that there are so many new discoveries against melanoma, that we can indeed remain optimistic and hopeful.

Sanda caregiver to Harry

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I had a biopsy in June that came back as In situ melanoma.  Had the out patient surgery end of June and was just barely able to get by without a skin graft.  When I went back at two weeks for a wound check the PA said there was a problem with the margins and honestly I just stopped listening at that point because I just couldn't deal with it.  Went back yesterday to get the stitches out and met with the plastic surgeon who explained that while the pathology report indicated that he had gotten all of the melanoma there were some 'abnormal cells' in several areas around the melanoma.  So, in three months, when the wound has competely healed, he will go back and take 4 biopsies in those areas.  

So, if it's not cancer but just 'abnormal' cells what then?  Because we just barely got away without a skin graft now cutting more out later could be problematic - the melanoma was on the back of my leg just above my ankle.

Thanks for any insight - and no I did not get a copy of the pathology report...

 

 

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jrervin0378's picture
Replies 9
Last reply 7/19/2013 - 8:36pm

Hi!!! I was diagnosed back in 2009 with SSM on my right knee (1.08mm, SNB Neg), and of course been followed regularly ever since.  I had a spot removed the other day on my upper arm that my derm has kind of been watching off and on for some time.  It had grown about 1mm in width, so she wanted to take it off.  It was completely flat, pink, and this sounds odd, but if you were to stretch that skin around it, it would pretty much disappear.  And, it had been there for at least 6 years, if not longer.  Kind of reminded me of a birthmark, or scar.  Anyway, I get to googling and all of that other nutty behavoir, and come up with amelanotic melanoma.  Just curious to see if anyone has had on of these rare mels, and if so, what did it look like.  I'm a hot, freaked out mess right now waiting for the results!!!! Any insight would be great!!!!!!!!!!!:)    Thanks!!    Jenn

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AMPDesigner's picture
Replies 4
Last reply 7/19/2013 - 8:54am
Replies by: Janner, Anonymous, Thandster, Owl

Yesterday I was doing my evening ritual (washing my face, moisturizing, brushing/flossing, etc).  I noticed a new mole at the point where my neck meets my chest.   I looked at a photo taken of me on April 25 (less than three months ago) and have confirmed there was no mole there.  This is not read or purple (I believe ruling out an angioma).  I'm 49 (will be 50 in November) with very light skin, light hair and blue eyes.  I have many moles on my body and have  had two moles removed in the past.  These were "iffy" (meeting the ABC..... criteria).  Both times they were "okay, but good decision to have them removed - the cells were atypical."  (Note:  one mole was itcy and bleeding, the other was on my back, I never saw it, the doctor was the one who insisted upon removing it.

My mother had skin cancer (on her legs, not melanoma, but squamas and basal cell).   I've had four friends who've experienced melanoma, two who have died. 

How fast does it take for a new mole to appear and at what point should I go to the doc?  It's funny because I just saw my doc and we were discussing my moles and he asked if I noticed anything new and I said no.... now it is just three weeks later and I've noticed this new one just yesterday.  Size-wise, it isn't as big as a pencil eraser - about 1/2 that size. 

Four people I know have had melanoma - two have died of the disease.  The survivors has moles they noticed that fit the ABC criteria.  The two individuals who died were diagnosed at Stage 4, and in their cases the primary mole couldn't be found (it was explained that their immune system may have "fought" the mole, but the cells remained in the system - if that sounds possible).  In one instance, the cancer was discovered on the sternum of a friend who had to have emergency heart surgery - imagine waking up after having heart surgery with an oncologist greeting you! 

Anyway, back to my primary question - how many people have gone from "nothing there" to "something there"  ?  Is it something gradual (a few years) or fast (as I said, this wasn't there in April). 

I appreciate your kind responses!

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hawaii marcus's picture
Replies 1
Last reply 7/19/2013 - 8:47am

I am a new MM patient, and have just completed my first 2 surgeries in March and April. I started radiation on a Tomotherapy - Hi Art machine, and have completed 30 treaments to my face. I have an odd sunburn and my nose lights up like Rudolph, but I am doing well.

I am ready to heal, and move on with my life. This round is over, and now I await a new PET scan in September to see if there is any spreading of disease.  

My thoughts and prayers go out to those who I am reading about and their family struggles with this disease on these boards.

Keep up the fight, and enjoy your time with loved ones!

 

Aloha,

Marcus

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bonusfries's picture
Replies 3
Last reply 7/19/2013 - 8:28am
Replies by: Tina D, Brendan, Anonymous

New diagnosee here. I had a mole on my abdomen that had been there for as long as I could remember, which starting growing both horizontally and vertically. Got in with a good dermatologist, excision, biopsy and then THE phone call soon afterwards. 

 

The tumor is >4mm, encapsulated with no satellites found in the tissue they originally removed. I was sent to UPenn for treatment, and I had a wide excision and lymph node removal on Friday. Now I'm just waiting for that next phone call.... to me the not knowing, the waiting is the worst part of this. Once I know then we can deal with it. My mind is just stuck trying to overvalue the good news and downplay the tumor depth.

 

And yeah I know exactly how this happened to me. A fair skinned white kid spends his whole childhood outside in a pool with no sunscreen... just another reason I'd like to smack my younger self.

 

Thanks for letting me vent, and thanks for the info I've already read on here. Here's to me being a regular for many many years to come.

 

Cheers!

Just do it

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