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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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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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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manu's picture
Replies 13
Last reply 7/23/2013 - 4:57pm
Replies by: ekimap, manu, Janner, POW, bonusfries, Anonymous, Everymoment, W., Johnfdc7

Hi,

I'm new to the forum and probably have the same question and fears as most, but I prefer to ask rather than not.

Here is my situation. I'm 39. My wife discover what is a 1cm wide mole near my ear on the edge of my hair 8 days ago. We were immediately surprised because we never saw it before and due to location, we can't see why we would have missed it, especially after my last hair cut 1 month ago which would have exposed it in full. So we're concerned.

I immediately went to see my family doctor who made a referal for a dermatologist. yesterday i was booked for teleconsultancy, where I saw a nurse who took pictures of it and is now sending the pics to a dermatologist of initial assessement. They say a response would come within 4 weeks and most of the time within a week, depending on how many patients they have to deal with. 

I've taken macro pictures 7 days ago and yesterday and the thing seems to have evolved quite a bit, not in diameter but in thickness. It's now more raised. Here are the pictures: http://postimg.org/image/98qliukyf/

Given this rapid change, the fact we never saw it before in a place that should have been seen and the possible wait for weeks to get an answer, I'm more concerned. Also I'm travelling next week for business and am wondering if I should cancel to go see someone else fast. 

How quickly can these things grow and how fast one should act. Are we talking days, weeks, months, years?

Thanks for any advice.

Manu

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val_erie38's picture
Replies 7
Last reply 7/28/2013 - 10:56pm

Had a shave biopsy on right breast today. Prior melanoma almost seven years ago on left buttock, had punch biopsy, then full excision. No further tx required or recommended at that time. Completed all monthly and yearly checks until 5 year mark. Went today for regular check up, had a mole on breast that the medical person stated she "didn't like the look of", and she did the shave biopsy. Has anyone else had a primary spot on a breast, and if so, did they do shave or punch at first? I'm wondering if the shave vs punch was a matter of preserving look of breast until pathology is back? I can't remember if last time it was shave, punch, excision, or just punch and then excision.

Thanks for thoughts!

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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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DeniseK's picture
Replies 11
Last reply 7/22/2013 - 6:08pm

Hello Again It's me!

I went to the specialist again yesterday.  I asked a bunch of questions that I know some of you were curious about.

First of all I have a new game plan.  My doctor is switching my Z to debrafenib, he said this BRAF inhibitor has been proven to cross the brain barrier.  I will stay on  Z until the Deb comes then take 1/2 dose while keeping on the Ipi infusions.  He wants me to complete the 4 course cycle of Ipi.  I will also still have gamma knife next week.  

We are still talking trial but not for a few months until I complete Ipi.  I asked about stability in the brain and if you had to be stable from MRI to MRI or from last Radiation/Gamma/or SRS procedure.  There are 2 criteria.  One is brain MRI to MRI stable for 8 weeks, the second is a 4 week washout period from radiation or treatments.  

I guess I'm not worrying about that right now since it's going to take me 9 more weeks to complete Ipi.  He also said Ipi ususally doesn't start working right away.  I know a lot of you know this already but I didn't.  He said it could take it 3-5 months for it to kick in.  I was shocked that we're going to wait that long but like he said, "if it works then we don't have to worry about a trial."  

I'm staying positive and optimistic.  A lot of what if's going on in my head but also a lot of hope. 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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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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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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Tina D's picture
Replies 12
Last reply 7/25/2013 - 9:20pm
Replies by: Tina D, NYKaren, Anonymous, aldakota22, 5374brian, Becky C., Owl, Amanda

My pre-prescreening brain MRI was normal... SO thankful. I go to Vanderbilt for the rest of the prescreening on the 22nd,and if all goes well I am scheduled to start into the Merck PD1 trial on Monday the 29th!!

Tina

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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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Commentary

Journal of Investigative Dermatology (2013) 133, 1928–1929; doi:10.1038/jid.2013.136

A STATement on Vemurafenib-Resistant Melanoma

Edward J Hartsough1 and Andrew E Aplin1

1Department of Cancer Biology and Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, Pennsylvania, USA

Correspondence: Edward J. Hartsough or Andrew E. Aplin, Department of Cancer Biology and Kimmel Cancer Center, Thomas Jefferson University, 233 South 10th Street, Philadelphia, Pennsylvania 19107, USA. E-mail: ejh004@Jefferson.edu or Andrew.Aplin@Jefferson.edu

Abstract

Despite recent advancements in the treatment of late-stage mutant BRAF V600E/K melanomas, a major hurdle continues to be acquired resistance to BRAF inhibitors such as vemurafenib. The mechanisms for resistance have proven to be heterogeneous, emphasizing the need to use broad therapeutic approaches. In this issue, the study “Stat3-targeted therapies overcome the acquired resistance to vemurafenib in melanomas” by Liu et al. proposes that signal transducer and activator of transcription 3 (STAT3)–paired box 3 (PAX3) signaling may be a mechanism that is used by melanomas to resist RAF inhibitors.

-------------------------------------------------------------------------------------------------------------------------------------------------------------------

 

Original Article

Subject Category: Melanocytes/Melanoma

Journal of Investigative Dermatology (2013) 133, 2041–2049; doi:10.1038/jid.2013.32; published online 28 February 2013

Stat3-Targeted Therapies Overcome the Acquired Resistance to Vemurafenib in Melanomas

Fang Liu1,2,5, Juxiang Cao1,5, Jinxiang Wu1, Kayleigh Sullivan1, James Shen1, Byungwoo Ryu1, Zhixiang Xu3, Wenyi Wei4 and Rutao Cui1

  1. 1Department of Dermatology, Boston University School of Medicine, Boston, Massachusetts, USA
  2. 2Department of Dermatology, Beijing Chaoyang Hospital, Capital Medical University, Beijing, China
  3. 3Division of Hematology/Oncology, Department of Medicine, University of Alabama at Birmingham School of Medicine, Birmingham, Alabama, USA
  4. 4Department of Pathology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA

Correspondence: Fang Liu, Department of Dermatology, Beijing Chaoyang Hospital, Capital Medical University, Beijing 100043, China. E-mail: roseliufang@hotmail.com; Rutao Cui, Department of Dermatology, Boston University School of Medicine, 609 Albany Street, Boston, Massachusetts 02478, USA. E-mail: rutaocui@bu.edu

5These authors contributed equally to this work.

Received 3 August 2012; Revised 19 December 2012; Accepted 1 January 2013
Accepted article preview online 23 January 2013; Advance online publication 28 February 2013

Abstract

Vemurafenib (PLX4032), a selective inhibitor of Braf, has been approved by the US Food and Drug Administration for the treatment of unresectable or metastatic melanoma in patients with BrafV600E mutations. Many patients treated with vemurafenib initially display dramatic improvement, with decreases in both risk of death and tumor progression. Acquired resistance, however, rapidly arises in previously sensitive cells. We attempted to overcome this resistance by targeting the signal transducer and activator of transcription 3 (STAT3)–paired box homeotic gene 3 (PAX3)-signaling pathway, which is upregulated, owing to fibroblast growth factor 2 (FGF2) secretion or increased kinase activity, with the BrafV600E mutation. We found that activation of Stat3 or overexpression of PAX3 induced resistance to vemurafenib in melanoma cells. In addition, PAX3 or Stat3 silencing inhibited the growth of melanoma cells with acquired resistance to vemurafenib. Furthermore, treatment with the Stat3 inhibitor, WP1066, resulted in growth inhibition in both vemurafenib-sensitive and -resistant melanoma cells. Significantly, vemurafenib stimulation induced FGF2 secretion from keratinocytes and fibroblasts, which might uncover, at least in part, the mechanisms underlying targeting Stat3–PAX3 signaling to overcome the acquired resistance to vemurafenib. Our results suggest that Stat3-targeted therapy is a new therapeutic strategy to overcome the acquired resistance to vemurafenib in the treatment of melanoma.

Abbreviations:

FGF, fibroblast growth factor; PAX3, paired box homeotic gene 3

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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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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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Have not posted in a while, but had a good follow-up today with my melanoma specialist. I became 3C in Sep 2012 when the melanoma spread to a single nearby lymph node (~18 months after initial diagnosis). I chose to "watch and wait" and today had another all clear visit - my next follow-up is in 6 months and I am scheduled to have a CT scan, an MRI of the brain, and full bloodwork. No PET scans.

It is interesting to me how scan type and frequency seem to vary a lot. Some people seem to have some type of scan every 3 months or so. Clearly, my oncologist is not a huge believer in these scans for detecting recurrence.  

Kevin   

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