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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MattF's picture
Replies 6
Last reply 11/20/2013 - 12:06pm

I got a PET CT (as a pre test for clinical trial) 6 weeks after surgery, a parotidectomy and right neck dissection.

PET CT report is in and it absolutely confirms to hypermetobolic nodes.

I sent it to my surgeon at City Of Hope and she called directly to my cell today with a plan to get me in next week to start to prep for surgery.

My melenoma onc is at the conf and I will try to talk to him this week to make sure this is the plan to have surgery.

Report, both PET and CT both showed a sclerotic focus on my right humerus. not sure what to think about that.

 

Matt

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aldakota22's picture
Replies 11
Last reply 11/20/2013 - 12:00pm

Had Cat Scans  Sat. 11/16. Saw doc @ NYU Clinical Cancer Center this afternoon11/19. Results were as good as it gets.Dr. Anna Pavlick says all the liver.kidney, blood levels were great and the scans were clean.This is after taken off "Z" and switching to Tafinlar (dabrafenib) on 8/25 My run with Zelboraf was just 2 weeks shy of 2 years..This news came just in time to ease my anxiety.As tomorrow I leave for San Diego to board a cruise ship on Thursday for a 15 day cruise to Hawaai with a stop in Mexico.Always wanted to visit Pearl Harbor and the Hawaaain Islands.This is right after spending last week in National Harbor ,Oxon Hill,Md. with grandkids & son & daughter-in-law. National Harbor is just outside the D.C. city limits so spent the week sight seeing.I just wanted to post some good news after reading so much bad news recently on the bulletin board.Like all of us here just hoping to be here when medicine finally finds the way to live with melanoma as a chronic condition.Praying that day comes soon .You are always in my prayers.Beat the Beast.      Al

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cep3700's picture
Replies 4
Last reply 11/20/2013 - 10:34am

Hi everyone, 

My mother is undergoing WBR for multiple brain mets, and should be going on zelboraf soon. She also has extensive metastatic melanoma in her abdomen, spleen, lungs, and ovaries. We are in Baton Rouge LA, and trying to get to MD Anderson asap. We havent been getting the care that we need here, everything is taking forever, the radiation machine keeps breaking, which causes my mother to miss her scheduled appointments, and also we were supposed to receive the zelboraf last week and still havent received it and no one will return our calls. We keep getting the run around, and my mother will not last long with this type of care! 

We have been in touch with md anderson, but the woman that was assinged as our contact person forgot to add us to the list, and keeps messing up the paper work. we sent her biopsy results two weeks ago and she still hasnt updated the records, which still say "waiting for biopsy". 

Do you think that we should just take my mother to MD Anderson this week and wait for an appt? would it help that we are there in person? Could they finish the WBR there? (she has 5 days left) Does it normally take a long time for the zelboraf to come in? 

Thanks for all of your support, I read the messages everyday, and I have followed a lot of your cases and learned a lot of information from all of you! Thank you!!!

-Colleen 

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CasieLV's picture
Replies 2
Last reply 11/20/2013 - 10:28am
Replies by: SABKLYN, Germer

Hi all,

I have been cancer free for 20 months and at my recent dermatology check up I had to get a mole on my back removed. I am waiting for the biopsy results to come back. How do you deal with the stress and anxiety of the fear that your melanoma might come back?

 

Casie, melanoma stage 3 survivor and co-owner of Wear Awareness

www.wear-awareness.com

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POW's picture
Replies 7
Last reply 11/20/2013 - 9:31am
Replies by: POW, casagrayson, GAngel, Swanee, Maureen038, SBeattie, Anonymous

Well, here we are 2 1/2 months after the roll out of the "new and improved" MPIP web site. While it is new, I can't say that it is much improved, although all of the glitches we reported during the first month have been fixed. Which is a good thing.

Unfortunately, one of the most valuable features of the old web site-- the threaded archive of old posts-- is gone. Many of us here have repeatedly requested that this feature be revived but no one from MPIP has even acknowledged our requests. Total silence. So I conclude that we are never going to see that feature again.

Such a shame! Such a loss of valuable experience and advice! It makes me wonder if MPIP hired the same web development company that Obamacare hired. 

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dolphin5's picture
Replies 5
Last reply 11/19/2013 - 10:56pm
Replies by: UrsulaZ, ecc26, POW, NYKaren

My wife has completed four rounds of BioChemo and now three rounds of Yervoy with no side effects until now.  Diaherra for close to three weeks.  She is on Predisone.  Our question is diet.  She has tried BRAT diet with little effect.  Rice cakes seems to have cut it back soom.  Tried plain oatmeal this morning and that lasted a couple of hours.  But, I am out of ideas as far as meals.  Any help would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/19/2013 - 8:13pm

My mother was just diagnosed on Halloween in Baton Rouge Louisiana, with what the Doctors thought was  metastatic ovarian cancer, and a week later we found out that it has spread to her brain, and there are currently five tumors in her brain. Just last Friday the doctors decided that instead of ovarian cancer now they re read the biopsy and say it is melanoma,Need a new melanoma specialist! The doctors have misdiagnosed my mother twice and now I am looking for a new option, because this approach is very slow moving and our doctors seem to be confusing themselves. We are trying to go to MD Anderson. Any advice? Need to ACT FAST!!!! 

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/19/2013 - 4:33pm
Replies by: Randy437

My husband is in his last few weeks of Interferon therapy following surgical removal of a Stage 3 tumor contained in a single lymph node.  He tolerated the high dose month of Interferon and the past 10 months of self injections  quite well.  He has been able to work full time during this treatment following the intense month in which he worked half days.  I share this since many folks ask what the treatment might be like. 

 His most recent PET scan indicated he is NED status!  We are excited in this moment, but know that we must be vigilant against this beast.  

Does anyone know of a vaccine trial that he might qualify for post Interferon?  His tumor was a wild type.and his primary site was never found.  We are in the Washington, DC area.

This is my first post , but I have been visiting the site for about a year.  I find the information to be helpful and mostly accurate.  Thank you all for sharing your joys and your concerns as I am sure I am not the only silent visitor to the site.  You have helped me navigate a very tough year!

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ksbadger13's picture
Replies 4
Last reply 11/19/2013 - 7:28am
Replies by: Anonymous, Becky, POW

Hello All,

My name is Kellie and I am a stage 3A survivor. I have posted a few times before, and was looking for a forum to post my latest crazy thoughts on young adults surviving cancer.  Luckily, more and more of us who are diagnosed as children or teens are surviving, but along with that, at least in my experience, comes some interesting psychological side effects.

I was diagnosed at 15 and completed a year of Interferon with complete lymph dissections. I’m now 22 years old and have had two stage one recurrences in the past five years. I’ve been thinking a lot lately about the aftermath of surviving cancer on young adults. I didn’t realize it then, but 15 years old was an incredibly young age to have to contemplate my own mortality and rally for a battle I had only just begun to understand. I’m not sure how, but I simply gritted my teeth and pushed through it. I continued to play my three sports (although poorly) and be a silly teenager. Even though my doctors weren’t so sure, I was always completely confident that I would be fine. The result was that I think I developed what I’ll call “survivalism”. At the end of treatment, I was 16 years old and had beaten CANCER. If I could do that, I could do anything, and that mindset became intensely engrained from that point onward. It was the typical teenage “invincible-ism” on some serious steroids. Lance Armstrong was my newfound idol and “Livestrong” became a mantra (sorry, was it too soon to mention steroids and Lance Armstrong that close together??) When asked to describe myself, survivor was the first word to come to mind. Sure, it was incredibly helpful, in that I was confident in my abilities and succeeded throughout high school and college. But the flip-side of this great “I can take on the world” attitude is that, eventually, every cancer survivor must face something that they CAN’T beat. Something that, no matter how hard you commit to fight against, you simply can’t win, the realization of which can destroy your entire sense of self. Unfortunately, I’ve already experienced that. My 48-year-old father was diagnosed with fibrosarcoma, a cancerous brain tumor, when I was 19 and he died only a year later. From the moment I learned of his diagnosis, I was ready for a good fight, and was confident that he would get through it, and that I could help him do it. I moved home from college to take care of him full-time; I arrogantly swooped right in, ready to take on his cancer and “fix it” for him. I’m a cancer survivor. I can do anything, right? The doctors eventually started giving worse and worse reports, but I refused to acknowledge them, and continued to encourage my dad with everything I had. Losing him was absolutely devastating. Two years after his death, to this day, I still catch myself being actually surprised that cancer won and that we lost. I felt like I hadn’t tried hard enough, that I somehow hadn’t given him everything I had. I’ve had a rough two years grappling with our defeat.

I’m not sure what could’ve been done differently to cushion this blow for me, or for those of other cancer survivors in similar situations. You obviously can’t look to your doctors or nurses to take you down a notch or to tell you surviving cancer doesn’t mean you’re a superhuman. It might just mean you got lucky, and that others aren’t as fortunate as you. I’ve been doing some research, and there’s not a whole lot out there yet about this idea or the psychological side effects of cancer survival on young adults. This is mostly food for thought, but if anyone has had similar experiences, I’d be happy to hear them!

Thanks for entertaining my ramblings :) 

Kellie 

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Michelem's picture
Replies 8
Last reply 11/18/2013 - 5:06pm
Replies by: kpcollins31, Janner, Michelem, Anonymous, SABKLYN, noisy77

My husband is stage three, currently recovering from surgery to remove a melanoma on his foot and eight lymph glands. Six of the glands had been completely taken over by cancerous tissue. We are told chance of recurrence is 50%. Iam thinking this may be low, given the level of involvement.

We are waiting to learn if he has BRAF gene and could be eligible for that trial.

otherwise, our doctor has told us we are eligible for a randomized interferon/ipi trial. We have read that interferon is not effective, and has many side effects, some know my husband is considering watch and wait, vs a randomized trial.

it is a difficult time,mdifficult decision. I am interested I hearing decision factors and experiences of others.

i also see there are other trials, something called IL2? I will ask our doctor about these.

thank you for thoughts and sharing!

MicheleM

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Clinicopathologic Predictors of Sentinel Lymph Node Metastasis in Thin Melanoma

 

J. Clin. Oncol 2013 Nov 04;[EPub Ahead of Print], D Han, JS Zager, Y Shyr, H Chen, LD Berry, S Iyengar, M Djulbegovic, JL Weber, SS Marzban, VK Sondak, JL Messina, JT Vetto, RL White, B Pockaj, N Mozzillo, KJ Charney, E Avisar, R Krouse, M Kashani-Sabet, SP Leong

Research · November 15, 2013
 
 
 

TAKE-HOME MESSAGE

  • While SLNB is considered standard for management of melanoma with > 1 mm Breslow thickness, it is unclear whether patients with thinner melanomas should undergo this procedure.
  • This retrospective review finds that Breslow thickness > 0.75 mm predicts for +ve SLNB in this cohort and argues that this should be used as the sole deciding factor of whether to proceed with this procedure.

- Richard Bambury, MD

 
ABSTRACT

Purpose: Indications for sentinel lymph node biopsy (SLNB) for thin melanoma are continually evolving. We present a large multi-institutional study to determine factors predictive of sentinel lymph node (SLN) metastasis in thin melanoma.

Patients and Methods: Retrospective review of the Sentinel Lymph Node Working Group database from 1994 to 2012 identified 1,250 patients who had an SLNB and thin melanomas (≤ 1 mm). Clinicopathologic characteristics were correlated with SLN status and outcome.

Results: SLN metastases were detected in 65 (5.2%) of 1,250 patients. On univariable analysis, rates of Breslow thickness ≥ 0.75 mm, Clark level ≥ IV, ulceration, and absence of regression differed significantly between positive and negative SLN groups (all P < .05). These four variables and mitotic rate were used in multivariable analysis, which demonstrated that Breslow thickness ≥ 0.75 mm (P = .03), Clark level ≥ IV (P = .05), and ulceration (P = .01) significantly predicted SLN metastasis with 6.3%, 7.0%, and 11.6% of the patients with these respective characteristics having SLN disease. Melanomas < 0.75 mm had positive SLN rates of < 5% regardless of Clark level and ulceration status. Median follow-up was 2.6 years. Melanoma-specific survival was significantly worse for patients with positive versus negative SLNs (P = .001).

Conclusion: Breslow thickness ≥ 0.75 mm, Clark level ≥ IV, and ulceration significantly predict SLN disease in thin melanoma. Most SLN metastases (86.2%) occur in melanomas ≥ 0.75 mm, with 6.3% of these patients having SLN disease, whereas in melanomas < 0.75 mm, SLN metastasis rates are < 5%. By using a 5% metastasis risk threshold, SLNB is indicated for melanomas ≥ 0.75 mm, but further study is needed to define indications for SLNB in melanomas < 0.75 mm.

Journal of Clinical Oncology
Clinicopathologic Predictors of Sentinel Lymph Node Metastasis in Thin Melanoma
J. Clin. Oncol 2013 Nov 04;[EPub Ahead of Print], D Han, JS Zager, Y Shyr, H Chen, LD Berry, S Iyengar, M Djulbegovic, JL Weber, SS Marzban, VK Sondak, JL Messina, JT Vetto, RL White, B Pockaj, N Mozzillo, KJ Charney, E Avisar, R Krouse, M Kashani-Sabet, SP Leong

 

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tarheel4242's picture
Replies 6
Last reply 11/18/2013 - 3:19pm
Replies by: Anonymous, sbrooks90, POW

Hi, I have been reading this site for a few months.Being diagnosed has hit me extremely hard. I was diagnosed at 37 with a lesion on my back. I want to share my path report and hope some can help me make better sense of it.

My Derm says this is extremely low risk, but in general its low risk to get....like 1 in 50 or so, so very small percentages don't give me too much confidence.

Hist type: SSM
Max tumor thickness: 0.27mm
Anatomic Level: 2
Ulceration: not identified
Periphial margins: uninvolved by melanoma in the plane sectioning
Deep margins: uninvolved by melanoma
Mitotic index: 0/mm2
Microsatellitosis: not identified
Lymph-vascular invasion: not identified
Perin.Invasion- not identified
Tumor infiltrating lymphocytes- present, non brisk
Tumor regression- not identified

Microscopic exam:

There is a circumscribed but asymmetrical compound melanocytic neoplasm, the epidermal component of which reveals focally markedly atypical epitheiloid melanocytes with abundant melanin throughout all epidermal layers. There is only a very focal invasion of the papillary dermis by few single and one small island of atypical melanocytes. There is a dense perivascular and nodular superficial lymphocytic infiltrate with numerous melanophages.

What do I make of this? Never makes note of growth phase. Also, is this saying that a large part of this was in situ?

Any and all help understanding this would really help. This has obsessed me to the point where it's all I think about. I am married with 2 kids and want to be around for a while. Thanks in advance for replies!

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Amanda's picture
Replies 9
Last reply 11/18/2013 - 11:03am

So my boyfriend Randy go the results of his 24 weeks scans and all his tumors continue to shrink, and nothing new!!  Also his vitiligo is showing up more. First his forearms, and now his shoulders have white patches, and the majority of his beard and mustache is white.  Hopefully Lambrolizumab will work so well for all of you as well.  Prayers to all.  

-Amanda-

"Give thanks in all circumstances"

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Jaryllane's picture
Replies 6
Last reply 11/18/2013 - 11:01am

I have been on the Lambrolizumab trial (MK3475) at The Angeles Clinic for four infusions now and had my first CT scan today.  My lungs, which previously had 5 small tumors, are clear; the tumors are gone!  This is such great news.  I hope the results are as good for others on this trial. 

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