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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JoWen's picture
Replies 2
Last reply 6/9/2013 - 7:41pm
Replies by: hbecker, JerryfromFauq

Just an update since I last posted about Joe's scheduled MRI and CT.

Joe's results came back on the MRI of the brain and CT of Chest, Abd and pelvis, and I am so relieved to report that all was negative.  There were two adenomas noted on the adrenal gland, which showed no concern at this time, but will continue to watch.  The BRAF was reported to be negative for mutation.  The additional biopsy that was done by the Dermatologist 2 weeks ago came back as negative and she stated it was a "blue mole"

So for now Joe remains at stage III, with NED....we continue to be diligent, knowing that changes can occur at any time.  He will continue on the "observe" interdisciplinary plan between surgical, medical oncologists and dermatologist every three months with repeat cxr/ct

Wendy

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ecc26's picture
Replies 5
Last reply 6/9/2013 - 7:39pm
Replies by: JerryfromFauq, NYKaren, ecc26, POW, Anonymous

Hello,

For those who haven't seen my earlier posts I'm a stage IIIb who progressed to stage IV last fall. I completed 3 courses of IL2 and all seemed to be going well until a week after the last course when new tumors started to sprout like weeds in my subQ. 3 or 4 weeks later a CT showed that despite having 15 new tumors, nearly all of them were subQ with only 2 very small masses on the surface of the lung. In preparation for exploring the possibilities of clinical trials an MRI was done which unfortunately found 7 brain mets. This has disqualified me from trials for the time being and the recommendation was to begin whole brain radiation (too many mets for surgery or gamma knife) and Ipi at the same time. This will begin on Monday.

My question of the moment is regarding BRAF: Apparently both my local oncologist and the specialist who administered the IL2 each tested me seperately for the BRAF mutation. My local oncologist recieved a BRAF negative report while the specialist recieved a BRAF positive report. When my local oncologist asked the speicialist about the contradicting reports the specialist told him it happens about 15% of the time that testing different parts of the same tumor will give different results. Has this happened to anyone else? Does it have any implications on the possible effectiveness of the BRAF inhibitors? Any insight anyone has would be helpful as I would like to know if I can use the BRAF inhibitors should I need them.

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Anonymous's picture
Anonymous
Replies 0

Severe body rash after5 days on full dose Zelboraf. Stopped x 1week, resumed half dose. Rash continued, low grade temp., swollen knuckles. Had to stop again. Anyone had similar experience? Able to stay on Zelboraf? Anyone try prednisone or other treatment? Thanks in advance, Jean

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bikerwifee's picture
Replies 2
Last reply 6/9/2013 - 2:37pm
Replies by: Tina D, lrkg1234

My husband and my best friend passed away Wednesday at home surrounded by his family and best friend. No more struggles and no more pain.

Lynn was a biker and a cival war reenactor and a veteran so what a send off he had. He was buried with his biker colors and escorted to grave site by a mile long of nothing but bikers. The thunder rolled.

Lynn was saved so I know he rest safely in the arms of jesus. Dont every give up Lynn fought till the end. Thank you all for the support and love.

God Bless
Belva

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Amanda's picture
Replies 6
Last reply 6/9/2013 - 10:42am

So my boyfriend is feeling some fatigue for the first time since starting pd-1.  Also, his chest wall tumor which is his largest is causing him some pain and it's gotten inflammed/swollen looking (this is also the tumor that he has had 3 biopsies on so far for the trial).  All his other tumors that have been also shrinking arn't inflammed  or painful, just this large one.  The tumor is and has been really soft as it's dying.   I'm hoping it's the accumulation of his immune cells making it so sensitive and larger.  He's been responding exceptionally well thus far, and his scans done a couple weeks ago were awesome, with everything shrinking.  He's had 5 infusions so far, hoping that the fatigue is from his body working hard to eliminate this horrid cancer.

I know people have had inflammation of tumors on yervoy, anyone had this on pd1?  I'm probably going to email his trial coordinator toinght to give them a heads up, and see what they say.

-Amanda-

"Give thanks in all circumstances"

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Replies by: NYKaren, DaciaDee

Hi y'all from Texas!

I have come to this site countless times of the last 6 months and always came away having learned something. While I have never posted, I know I can usually find answers. I am having a tough time this go around though. I'll give as brief of a history as I can. Red hair/fair skin/freckles/grew up with a swimming pool and blistering sunburns.

10/2010 - New mole appeared and grew quickly on my right nostril. Shave biopsy was a-typical but they wanted to do MOHs since it was so a-typical. I basically had all the skin on my nostril removed with a skin graft from behind my ear.
11/2011 - Several new moles showed up around the grafted area. A shave biopsy was done. Again, severely A-typical but no diagnosis. Path report did mention positive HMB45 but "further re-excision would result in significant disfigurement". I was told to watch them. I did not
know what HMB45 was and trusted my Doc.
10/2012 - I watched one of the now known satilittes grow to the size of a pencil eraser. I switched dermatologists. Upon my arrival she immediately referred me to a top MOHs surgeon here in Houston saying it was definatly not normal and immediate action needed to be taken. Upon seeing me the MOHs surgeon said he would not preform MOHs. (He usually does them at the first visit) He did a biopsy. 4 days later they called and I missed the call. When I called back I was informed the dr was out the rest of the week but they would call Monday. 1/2 hour later the dr. Called me from his car. "Invasive malignant nodular melanoma, deep vertical margins positive with ulceration, at least >3mm, at least clarks level IV and satilitte lesions." Followed by he was very sorry to have to tell me.

Many scans and appointments at MD Anderson later. "We can't read the future, but we're shooting for a cure." My favorite quote from my head/neck doc.

1/7/2013 - wide local excision, graft delayed for clean margins report. 4 Syntinel nodes removed for biopsy but due to the cancer being in the head/neck I "lite up like a Christmas tree" during mapping making deciding which nodes to remove difficult.
1/10/2013 - wider margins taken due to unclean margins during the wide local excision. followed by rotational graft to cover the wound. 102 staples from my right ear, along my sunglasses line, around half my nose, down to my lip.
1/14/2013 - node pathology report: 1 of 4 nodes postitive for mestestic melanoma. Micro, subcapsular and capsular, no extracaoular. My surgeon mentioned lymph node removal but did not believe it "would benefit me at this time".
2/17/2013 - face and neck high dose radiation. Healing poorly with skin still dying 3 months later. Interpheron not an option due to my severe SLE (lupus)
4/7/13 - new mole just outside of wide excision scar. Appeared like previous satilittes. Head/neck surgeon wanted to wait for biopsy due to radiation damaged skin. New CT scan was clean.
6/7/2013 - MD Anderson dermatologist told me it would have to be removed if I wanted to continue treatment and "its aggressive". I'm not sure how to take that.

The last 8 months have been a wild and crazy ride.

I have been told everything from IIIA to IIIC depending on which doctor I saw at what point during treatment.

I wanted to see if anyone has experience with recurring satilittes just a few months following clean wide margins. Any insight would be greatly appreciated. I've been very positive throughout the past 8 months. I've learned to make light of the situation as a defense but its getting harder. I don't feel like my docs are being honest with me anymore.

"He only gives you what you can handle."

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Replies by: Janner, JulietJ, DonW, LibbyinVA, JerryfromFauq, Anonymous

Hi all,

This is my first time posting here. I've read many of the posts and appreciate all the good information and wisdom.

I'm posting on behalf of my Dad. He had a melanoma excised from his face in May by a plastic surgeon after his dermatologist took a biopsy and it came back positive. I did not see a pathology report, but the doctor told him it was in situ.

He got a call today that his lab work came back without clear margins, and they called him in for an appointment. He came home with another bandage on the OTHER side of his face - they had seen another suspicious mole and done a biopsy. And they've scheduled him for another excision in early July to get the rest of the cells that they didn't get the first time around. If the new biopsy turns out to be anything, they'll take care of that one in July too.

He's worried about the news, and I try to reassure him that they just didn't have a proper reading the first time - it's an inexact science, right? - and that they just missed some cells. But I'm worried that it's a recurrence at the same site - can that happen so soon after the original treatment? (Just a month.) Or are we safe assuming that they just didn't get it all the first time?

Thank you all for any insight you might have. I wish you all the best with your and your loved ones' treatment.

Julie

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Hi everybody I'm new here. My brother was diagn osed with stage4 melanoma . He also has an 8 NM met to the brain I'm confused on research and how to help any suggestions would be great. Thank you

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Question...In Dec. I had a melanoma removed from my left thigh via 2 wide excisions (the first didn't get wide enogh margins) and am .72mm breslow's with a Clark's Level 4-I had a sentinal node biopsy due to rapid cellular mitosis.  I found a large brownish mole on my left buttock/hip area-slightly irregular border, variation in brown color, asymmetrical.  I'm not panicking as i will see oncologist in about 8 weeks, but I was looking at images online-how do I know if it is a dysplastic nevi (I don't think I have these) or is it another melanoma & is that common?  Thanks!

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ecc26's picture
Replies 12
Last reply 6/8/2013 - 10:01am
Replies by: ecc26, jP85, DeniseK, Anonymous, DonnaK, POW

Hello,

I posted a little while ago looking for others who might have had new tumors show up after an apparent response to IL2 and also asking about the bruising/inflamation that was happening with these new tumors. Thank you to those of you who responded. I do appreciate it. 

At the time of the last posting I had had a CT which ended up showing that all of the new tumors were subQ, which is the best possible scenario. On Monday I also had an MRI in preparation for an appointment at Dana-Farber (yesterday) to investigate whether I should persue clinical trials (specifically for the PD1 drugs or a PD1/Ipi combo trial as I am Ipi naive) or try Ipi first. When I picked up the imaging discs from the MRI, CT and the PET from before my last round of IL2 I read the MRI report and found that I have 7 brain mets with "several" in the leptomeninges (network of blood vessels, etc surrounding the brain) as well. These results disqualify me from the clinical trials and are too numerous for either surgery or gamma knife. It changed the conversation at Dana-Farber from "what trials are there and should I persue them?" to "is there anything I can do?".

The advice was to pursue whole brain radiation concurrently with Ipi (to try and take advantage of the abscopal effect) in hopes of at least reducing/stabilizing the tumors to hopefully make me eligible for trials in a few months. I have an appointment with my local oncologist tomorrow where things will likely be set in motion. He gave me a paper (haven't read it yet) showing that Ipi works just as well in those with brain mets as in those without them, though it still has the same low response rate. We had a discussion about the abscopal effect and the possibility that it increases the chances of getting a response from Ipi (he gave me a paper on that too). None of this makes me any less concerned about the fact that my brain filling with tumors, or makes me feel any better about what they indicate prognostically. 

I'm also trying to track down my BRAF results (or if it was ever done, as I was told it was). 

Has anyone else done both radiation and ipi at the same time? If so, what were your side effects? I have avoided researching radiation so far in my process hoping I would never have to so I don't know as much about it- how long is a course for whole brain radiation? How long do the side effects (nausea, etc) last after your last dose? Do they dissipate quickly or hang around for a long time?

Any input is appreciated,

Eva

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KT's picture
Replies 1
Last reply 6/7/2013 - 7:34pm
Replies by: LibbyinVA

Every time I see an anti-smoking commercial or pamphlet, I think, "why isn't there more of an anti-tanning campaign?" All day I see and hear commercials for tanning salons, boasting the "healthful" effects of vitamin D and student discounts. And, though melanoma awareness is higher than ever, it still seems like people still dispute whether tanning is really that bad for you. I've seen one good magazine campaign and one commercial, but it's not on anymore :( I know people will always tan, or smoke, but at least smokers undeniably know that it's a bad choice.

It makes me want to walk in there with my many scars and disfigurements exposed. I want to picket them with photos of when I had so many stitches I looked like Frankenstein, and when I was sick after months of treatment... I want them to see my beautiful young face behind an oxygen tube. I want them to see my medical bills.

Is it just me?

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LibbyinVA's picture
Replies 6
Last reply 6/7/2013 - 7:06pm

In the interest of giving some hope to others, just want to let everyone know that today I am celebrating my 8th year of being NED. I won't bore you with all the details as you can check my profile if you want more information. Melanoma certainly left its mark on me but I am still winning. Believe in miracles...I am one!

LibbyinVA-Stage IIIb

I have melanoma but melanoma does not have me!

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NYKaren's picture
Replies 4
Last reply 6/7/2013 - 3:25pm
Replies by: NYKaren, jag, POW, kylez

So Dr. Wolchok just called to tell me the Merck Phase 1 PD1 trial I was aiming for has been closed by Merck--or at least they've closed seats at sloan. He said it was Merck's edict with no exceptions. Boy am I upset.
He said my 2 choices are to go back on Zel or see Dr. Pavlick at NYU where they have seats in the phase 2 trial w/the chemo arm.
I choose to at least see Dr P next week and see what she thinks. I know she's good, it's not a matter of that, it's whether I want to possibly go through the effects of chemo. But I'm afraid if I go back on Zel, the Mel will just come back soon, when there might not be a trial seat available.

Any ideas, thoughts, suggestions??
:(
Karen

Don't Stop Believing

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Research June 06, 2013

 

 

Score One for Nivolumab/Ipilimumab Combo in Advanced Melanoma

N. Engl. J. Med. 2013 Jun 02;[EPub Ahead of Print], JD Wolchok, H Kluger, MK Callahan, MA Postow, NA Rizvi, AM Lesokhin, NH Segal, CE Ariyan, R-A Gordon, K Reed, MM Burke, A Caldwell, SA Kronenberg, BU Agunwamba, X Zhang, I Lowy, HD Inzunza, WFeely, CE Horak, Q Hong, AJ Korman, JM Wigginton, A Gupta, M Sznol

 

 

TAKE-HOME MESSAGE

Researchers combined nivolumab plus ipilimumab in patients with advanced melanoma. Results demonstrated remarkable response rates, along with a manageable safety profile.

Commentary by

Immunotherapeutic approaches to cancer continue to excite oncologists, and with good reason. A presentation by Jedd Wolchok of Memorial Sloan-Kettering Cancer Center presented at the ASCO 2013 meeting, and published simultaneously in The New England Journal of Medicine, focused on the combination of ipilimumab, an FDA-approved CTLA-4 antagonist, and nivolumab, an investigational PD-1 inhibitor, for the treatment of patients with advanced melanoma. Both drugs affect the immune system by reducing the so-called "brake mechanism" by interfering with T-cell inhibitory checkpoints, which normally prevent innate immunosurveillance of cancer cells. By targeting two different points along this pathway, preclinical studies had demonstrated additive benefits over one drug alone.

In this phase I study, the results were dramatic: a 40% response rate, clinical activity in 60% of patients, many complete/near complete responses, and very long duration of response. The concurrent administration of these agents appeared to be superior to a sequential approach, and the maximal tolerated dose of the combination was established.  Given the fact that other PD-1 antibodies have also shown impressive activity, as seen with lambrolizumab in an article published in the same issue of NEJM, and the promising results of this approach in common cancers such as non–small cell lung cancer, we appear to be entering an era when the ultimate personalized therapy—a patient's own uniquely specific immune system—provides tangible, long-lasting benefit against cancer.

SUMMARY

PracticeUpdate Editorial Team

Background: In patients with melanoma, ipilimumab (an antibody against cytotoxic T-lymphocyte-associated antigen 4 [CTLA-4]) prolongs overall survival, and nivolumab (an antibody against the programmed death 1 [PD-1] receptor) produced durable tumor regression in a phase 1 trial. On the basis of their distinct immunologic mechanisms of action and supportive preclinical data, we conducted a phase 1 trial of nivolumab combined with ipilimumab in patients with advanced melanoma.

Methods: We administered intravenous doses of nivolumab and ipilimumab in patients every 3 weeks for 4 doses, followed by nivolumab alone every 3 weeks for 4 doses (concurrent regimen). The combined treatment was subsequently administered every 12 weeks for up to 8 doses. In a sequenced regimen, patients previously treated with ipilimumab received nivolumab every 2 weeks for up to 48 doses.

Results: A total of 53 patients received concurrent therapy with nivolumab and ipilimumab, and 33 received sequenced treatment. The objective-response rate (according to modified World Health Organization criteria) for all patients in the concurrent-regimen group was 40%. Evidence of clinical activity (conventional, unconfirmed, or immune-related response or stable disease for ≥24 weeks) was observed in 65% of patients. At the maximum doses that were associated with an acceptable level of adverse events (nivolumab at a dose of 1 mg per kilogram of body weight and ipilimumab at a dose of 3 mg per kilogram), 53% of patients had an objective response, all with tumor reduction of 80% or more. Grade 3 or 4 adverse events related to therapy occurred in 53% of patients in the concurrent-regimen group but were qualitatively similar to previous experience with monotherapy and were generally reversible. Among patients in the sequenced-regimen group, 18% had grade 3 or 4 adverse events related to therapy and the objective-response rate was 20%.

Conclusions: Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients.

The New England Journal of Medicine
Nivolumab Plus Ipilimumab in Advanced Melanoma
N. Engl. J. Med. 2013 Jun 02;[EPub Ahead of Print], JD Wolchok, H Kluger, MK Callahan, MA Postow, NA Rizvi, AM Lesokhin, NH Segal, CE Ariyan, R-A Gordon, K Reed, MM Burke, A Caldwell, SA Kronenberg, BU Agunwamba, X Zhang, I Lowy, HD Inzunza, WFeely, CE Horak, Q Hong, AJ Korman, JM Wigginton, A Gupta, M Sznol

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