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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Anonymous's picture
Anonymous
Replies 0

I had a small, new mole on my ear removed via punch biopsy a couple of weeks back.  The biopsy came back as severely atypical - I have requested the pathology report, but have not received it yet.  My understanding is that in addition to being atypical, they did not obtain clear margins on the original biopsy.  My dermatologist referred me to a plastic surgeon for removal of the remaining abnormal cells plus a margin, but my consultation with her is still a couple weeks off and I am driving myself a little crazy with the as yet unanswered questions.

I know that severely atypical does not equal melanoma; that histologically, it's really close, but not quite.  Can anyone point me to the results of research studies on how often severely atypical moles do transform into melanoma?  I know that 5 mm margins are generally recommended for severely atypical lesions, but I am concerned about how much of my ear that is.  It seems like an aggressive treatment, and I am trying to understand what the treatment is backed up by.

I am also wondering if anyone can give me an idea of what to expect for the surgery.  The mole was on the scapha/antihelix of my ear, so it's kind of a complex area to work in for the reexcision.  Since my dermatologist referred me to a plastic surgeon, I am assuming they expect to perform some level of reconstruction on the site - does anyone know what reconstruction options I'm likely to be presented with?  Is it likely they will need to perform a skin graft?  What sort of recovery time is typical for this type of surgery?

Thank you.

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bikerwife's picture
Replies 3
Last reply 1/17/2013 - 9:26am
Replies by: awillett1991, bikerwife

Lynn had a 8 week checkup today. the leg level jumped from 232 to 320. Dr said that wasn't to bad cause it was far from being the 500 to 700 and even a 1000 like it was before Zelobraf. He said he will scan body in 4 weeks and check blood again then. Lynn has 3 wart looking things he wants dermatologists to remove. We have brain scans next Wed. Hope that turns out good. We were hoping to be NED at next scans but with blood jumping up don't think it will happen.                

I also asked about the on and off treatments with Zelobraf and he said yes some Dr. we're beginning to do it and it may be an option. I also asked about anti pd 1 and he said they would have it in Feb. Guess he was talking about a clinical triall.

What God leads u to he will. Lead you through

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Replies by: JakeinNY, Anonymous, Swanee

A 42 minute audio piece (there is a 1 1/2 minute commercial at about the 18 1/2 minute mark so just fast forward or be patient!) with Dr. Eugene Fine, MD (Albert Einstein, Montefiore Med Ctr) from NYC, who talks about the ketogenic diet for cancer patients, explaining what it is all about, and the results of his RECHARGE trial in which 6 of 10 cancer patients (none with melanoma) had stable disease (5) or a partial regression (1) that everyone should at least listen to and possibly talk to their oncologist about :

http://www.thelivinlowcarbshow.com/shownotes/6898/628-dr-eugene-fine-use...

 

Dr. Fine's profile at Albert Einstein College of Medicine

http://www.einstein.yu.edu/faculty/2013/eugene-fine/

 

A ketogenic diet trial going on right now that is taking melanoma patients:

http://www.clinicaltrials.gov/ct2/show/NCT01716468

 

I'm sure that everyone (including myself) would love to take a pill and be cured of melanoma and all ailments, but if the answer can be conventional treatment along with "other" methods, then so be it!!!

Do the best you can.

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DeniseK's picture
Replies 5
Last reply 1/30/2013 - 11:16am
Replies by: Anonymous, DeniseK, bikerwife

Hello Again,
Just found out some very helpful information.
First if all the American Cancer Society offers some great programs for assistance. Wigs, support groups, mileage reimbursements for anything to do with your cancer, and lodging. The number I have to call is for Calif but she said they help nationwide 1-800-395-look.
Also there's the Lazarex Cancer Foundation that helps stage IV patients in clinical trials with lodging, gas, airfare, etc. This is great for those of us who need to travel for trials. You wouldn't be limited to what trials you could do. I don't know all the details but their website is Lazarex.org and their number is 877-866-9523. Hope this can help someone.
Denise

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

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DeniseK's picture
Replies 18
Last reply 1/17/2013 - 5:38pm

Hello Everyone,
I wanted to update everyone on whats been going on.
First of all the actual wbr was a breeze. I started losing my hair about the 7th treatment pretty bad. I chose to cut it all off and donate it to Love For Locks, I donated over 22 inches. I've always had long hair so being bald has been a trip but a very small price to pay. I have a sexy new redhead wig that was donated to me from a wonderful person named Jill at Artistic Salon in Auburn CA.
Current side effects from wbr are kind of hard to figure out since today is also my 9th day on Z. My head is itching like crazy, this could be because I shaved my head and still have stubbles, my ears, forehead, and head are burned like a sunburn so this could be causing the itching as well. Monday was my last day of dex and I had a horrible headache for a couple days, pretty much debilitating so I took half a dex yesterday and it helped, no dex today and headache is better. Food and drinks tastes really weird, my fiance doesn't think I should cook because I over salt everything :) I've had some nausea but got some Prochlorperazine 10mg and that helps. I'm taking a bunch of pills, in the am 4 z, 1prochlorperazine, 1morphine sulfate 20mg, 1 hydrocodone 10mg, supplements I'm taking are, turmeric, vit c, vit a, vit D3, cod liver oil, benfotiamine, and graviola extract (sour sop). Same at night minus the supplements. Any other supplements you can recommend?
Overall I feel pretty good no joint pain or rash as of yet.
The Zelboraf is kicking butt on my tumors!! I have the tumor on my arm that I'm using for a marker and its shrunk over 50% in a little over a week!! My breathing is easier and hardly any pain in my chest and back!! Its like a miracle!! I know my results could be short lived but I could also be a long term responder like Dick, Al, and many others. Just being a responder is a plus, this at the very least buys me time for the next miracle!!
I've finally been approved to go see Dr. Minor in San Fran, I go this Friday. I'm going to ask about the dosage of Z, clinical trials, any evidence of z working on the brain, and what he recommends on going forward. I'm super excited to get his opinion and visit the big city.
Brain MRI scheduled for February 15, results not until the 21st from the radiolgist but my dr said he'd try to get them to me sooner.
Does the z cause food to taste weird? Hard to determine whats causing what. :)
I've been hoping for an update from Linda Haley has anyone heard?
Lots of love to you all,
Denise

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

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lou2's picture
Replies 2
Last reply 1/16/2013 - 10:18am
Replies by: lou2, buffcody

Commentary

Journal of Investigative Dermatology (2013) 133, 292–295; doi:10.1038/jid.2012.386

Melanoma Prognostics and Personalized Therapeutics at a Crossroad

Roger S Lo1,2

  1. 1Department of Medicine, Division of Dermatology, David Geffen School of Medicine, University of California, Jonsson Comprehensive Cancer Center, Los Angeles, California, USA
  2. 2Department of Molecular and Medical Pharmacology, David Geffen School of Medicine, University of California, Jonsson Comprehensive Cancer Center, Los Angeles, California, USA

Correspondence: Roger S. Lo, Department of Medicine, Division of Dermatology, David Geffen School of Medicine, University of California, Jonsson Comprehensive Cancer Center, 10833 Le Conte Avenue, Los Angeles, California 90095-1750, USA. E-mail: rlo@mednet.ucla.edu

Abstract

Melanoma has recently emerged as a poster child for targeted therapies and immunotherapies, with game-changing BRAF and immune checkpoint inhibitors now in clinical trials and with approved clinical indications. One highly anticipated use of novel therapeutic agents is in the adjuvant setting. Adjuvant BRAF and/or immune checkpoint inhibition may positively affect the survival of melanoma patients diagnosed at earlier stages but still at high risk for postsurgical relapses. BRAF V600 mutations and, potentially, melanoma-associated immunity are predictive biomarkers for responses to these novel therapies. Emerging evidence points to these predictive biomarkers doubling as prognostic biomarkers for high-risk stage III patients, promising to help stratify these patients for the application of novel adjuvant therapies.

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Brendan's picture
Replies 8
Last reply 1/19/2013 - 7:27pm
Replies by: Tina D, NYKaren, JakeinNY, DeniseK, Randy437, Swanee, aldakota22, Anonymous

Hi Everyone,

I signed up in September to thank Brenda (Brenda-you and Kevin continue to inspire me and others!), but this is my first post about myself.

I have been stage IV since Sep 2011 (more details on my profile). I had a craniotomy in November to remove a brain met and just received the good news that I am still NED...MRI and CT came back clean.

I have visited this site often and would like to thank everyone for their contibutions and honesty. I always say to myself, "We are fighting cancer-it's not supposed to be easy," and this website often helps in the fight.

To the people out there who are new here I would like to offer some unsolicited advice that has helped me:
1-Go to an oncologist who specializes in melanoma.
2-Go to an oncologist who specializes in melanoma.
3-Reread 1 and 2.
4-Be careful with this website. I have learned to use it for inspiration. It has helped me through some tough days, but some days the scary stories make things worse (just my opinion-I realize we are all doing what we can and the scary stories are inevitable).
5-Check out the posts of CharlieS. His story (and his grin!!) will make you smile.

Good luck and God bless.
Brendan

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Brendan's picture
Replies 0

Hi Everyone,

I signed up in September to thank Brenda (Brenda-you and Kevin continue to inspire me and others!), but this is my first post about myself.

I have been stage IV since Sep 2011 (more details on my profile). I had a craniotomy in November to remove a brain met and just received the good news that I am still NED...MRI and CT came back clean.

I have visited this site often and would like to thank everyone for their contibutions and honesty. I always say to myself, "We are fighting cancer-it's not supposed to be easy," and this website often helps in the fight.

To the people out there who are new here I would like to offer some unsolicited advice that has helped me:
1-Go to an oncologist who specializes in melanoma.
2-Go to an oncologist who specializes in melanoma.
3-Reread 1 and 2.
4-Be careful with this website. I have learned to use it for inspiration. It has helped me through some tough days, but some days the scary stories make things worse (just my opinion-I realize we are all doing what we can and the scary stories are inevitable).
5-Check out the posts of CharlieS. His story (and his grin!!) will make you smile.

Good luck and God bless.
Brendan

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lou2's picture
Replies 6
Last reply 3/3/2013 - 12:20am

Durable Cancer Regression Off-Treatment and Effective Reinduction Therapy With an Anti-PD-1 Antibody
Clin Cancer Res. 2012 Nov 20;[Epub Ahead of Print], EJ Lipson, WH Sharfman, CG Drake, et al

TAKE-HOME MESSAGE

Patients with treatment-refractory solid tumors who responded to the anti–programmed death-1 (PD-1) antibody BMS-936558 had remarkably durable remissions, including continued tumor regression off therapy and, in a melanoma patient, successful reinduction therapy after delayed progression.

Immunotherapy as a treatment for cancer is one of the oldest systemic modalities, well predating chemotherapy. Our previous rudimentary understanding of the complex immune system, which can either tolerate or reject tumor cells based on a host of conditions, has limited the practical application of immune-based therapy to a few specific examples. This situation is now rapidly changing. Critical immune pathways, such as the programmed death receptor (PD-1) and ligand (PD-1L) interaction, can be manipulated to broadly treat a variety of cancers. A PD-1 antibody has generated great excitement by demonstrating in the clinic that modulation of this pathway can reduce cancer immunosuppression and lead to clinical responses.

We are still at the very beginning of understanding how best to utilize immunotherapy. As the current study in Clinical Cancer Research demonstrates, treatment with anti-PD-1 antibody can lead to prolonged, unmaintained remissions, which are very different than the response to chemotherapy or other biologicals. Moreover, retreatment with the antibody in progressors can be associated with a second prolonged response, suggesting that intrinsic resistance does not develop in all patients after initial pathway alteration. These exciting results remind us that a tremendous amount of clinical research will be required to optimize immunotherapy added to the other aspects of our armamentarium of cancer therapeutics.

SUMMARY
OncologySTAT Editorial Team

The programmed death-1 (PD-1) pathway plays an important role in the down-modulation of anti-tumor immunity. Immune checkpoint blockade with anti-PD-1 therapy has the potential to reverse cancer immunosuppression and “reset” the equilibrium between tumor and the host immune system.

In the first-in-human phase I trial of the anti-PD-1 antibody BMS-936558, 3 of 39 patients with treatment-refractory solid tumors had an objective response to an intermittent dosing regimen. Lipson et al report long-term follow-up of these three patients.

A man with metastatic colorectal cancer had received multiple chemotherapy regimens with only temporary responses. In the current trial, the patient had a partial response to a single dose of anti-PD-1 and received five doses over the next 9 months. He ultimately achieved a complete response (CR), which is ongoing at 3 years off therapy.

Immunohistochemical studies of archived tissue from the patient’s primary tumor 4 years before anti-PD-1 therapy showed cell surface expression of PD-L1 (a PD-1 ligand) by infiltrating macrophages and lymphocytes and by rare tumor cells. This suggests a correlation between tumor cell surface PD-L1 expression and the likelihood of response to anti-PD-1 therapy, but further study is required.

The second patient, with metastatic clear cell renal carcinoma, had disease progression despite numerous systemic therapies. In the current study, the patient had a mixed response to a single dose of anti-PD-1: pulmonary, lymph node, and intramuscular metastases were regressing, but lesions in the pancreas and bone were growing. After two more doses, the patient achieved a partial response (PR). The pancreatic lesion had disappeared and the bone metastasis was slowly resolving. A year later a brain lesion was removed, but showed no evidence of tumor, consistent with a resolved lesion. The metastatic lesions continued to regress off therapy, and 2 years later, a CR was documented. The patient remains in CR more than 4 years after discontinuing anti-PD-1 therapy.

The third patient had metastatic melanoma that progressed despite therapy. In 8 weeks after a single dose of anti-PD-1, the patient had a mixed response, with some lesions regressing and others growing. Two more doses given over the next year also produced a mixed response. After another year of anti-PD-1 therapy, a PR was documented, and therapy was discontinued.

When the melanoma again progressed, biopsy showed intense surface tumor cell expression of PD-L1. The protocol was modified to allow this patient to receive reinduction therapy with anti-PD-1. After two doses, she had a new PR. She continues to receive anti-PD-1 and remains in PR 16 months after reinduction. The successful repeat application of PD-1 blockade in this patient suggests a potential role for “maintenance” immunotherapy, with anti-PD-1 given on an intermittent schedule after an initial response.

The mixed responses seen in the patients with renal cell cancer and melanoma highlight the importance of developing new immune-related RECIST criteria to assess the often unconventional response patterns seen with immune checkpoint blockade.

Recently reported results of a larger phase I trial using biweekly anti-PD-1 showed durable responses in non–small cell lung cancer, melanoma, and renal cell cancer with 1 year or more of follow-up. This trial may help form the basis of future studies combining immunotherapy approaches for synergistic effect.

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slorlando's picture
Replies 2
Last reply 1/15/2013 - 2:53pm
Replies by: Janner, malika

Hello all,

My sons slides were sent to Sloan Kettering for expert opinion. Sloan then sent the slides out for a FISH analysis.

I received results today and now I am even more confused.  The new diagnosis is "atypical compound spitz tumor, irritated; transected".  Is that the same thing as the first diagnosis?

The report then goes on to say that the negative FISH test is re-assuring, but sue to the limitations in the sensitivity of the test, a negative result is not entirely definitive.  The pathologist goes on to say the a re-excision is strongly recommended along with a sentinel lymph node biopsy.  He also stated "I would also like to state that aspect of the diagnostic challenge (and hesitation to establish a definitive diagnosis) is the fact that we only see the superficial portion of an incompletely removed lesion.  We would appreciate the opportunity to review the completely excised tumor, since features of the residual tumor may be relevant for the final diagnosis."

That's not all of the report but it seems very indecisive.

Thoughts?

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tony's picture
Replies 35
Last reply 6/1/2013 - 4:00am

Hi Everyone,

 

I'm new here but I am already gaining knowledge and support from the many posts on the forum. Its great to see so much support and empathy. I hope that as time, and my knowledge, progress that I will be able to contribute as well.

 

I was diagnosed with metastatic melignant melanoma on 22nd Dec following a Lymph node biopsy. I am now recovering from a full Lymph Node Dissection (LND). In total 3 lymph nodes in my left axcilla were affected. When the LND was analysed they found no evidence of melanoma in the surrounding tissue. I have not yet had a meolecular test for BrafV600 or C-Kit mutations but will be asking my onc to arrange this when I see him next.

 

So, the dilema... Interferon or Watch & Wait? I apologise if this is repetitious from previous posts but I wanted to share my thoughts. The summary of all the trials conducted on High Dose Interferon (HDI) appears to be that it benefits a small number of patients by extending the Relapse Free Survival time by an average of 7-9 months but has no effect on Overall Survival time compared to no further treatment after surgery. Is it worth a year of being quite sick on the off-chance that I might be in the small number of patients that respond? If I do respond is the treatment year factored into 7-9 months of RFS I might gain? I'm not sure I want to risk feeling sick for a full year of my remaining life when its almost certainly not going to mean I live any longer. I would like to be able to enjoy every day to the fullest extent. One significant study concluded that "interferon did not reduce the risk of the cancer coming back. It was no better than having no further treatment after surgery."

 

http://www.cancerresearchuk.org/cancer-help/trials/aim-high-a-study-of-a...?

 

I am doing everything possible with diet and natural therapies to make my system as inhospitable to cancer as possible (including eating organic, avoiding all sugar, and keeping my system in an alkaline state) but traditionally I have always favoured the alopathic route. However is HDI worth considering? Maybe the initial one month of IV treatment but not the 11 months of SC injections as a compromise?

 

Your thoughts and opinions would be really valuable as I'm really struggling with this decision.

 

Many thanks,

Tony

Never give up!

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JerryfromFauq's picture
Replies 1
Last reply 1/15/2013 - 7:56am
Replies by: POW

http://www.onclive.com/publications/targeted-therapies/2012/June-2012/Im...

Immunotherapy in Advanced Melanoma - Page 5

Published Online: Monday, June 18, 2012   [ Request Print ]

Increasing Options: Sequence of Therapy

With increasing options for treatment in melanoma, it becomes incumbent to understand the nuances associated with each therapy and aim to streamline an evidence-based approach to the metastatic patient. Immunotherapy offers the only chance for durable disease control and should preferably be the first-line therapy for the patient with advanced, unresectable melanoma in the absence of any obvious contraindication (eg, active autoimmune disease). Tumors from these patients should be tested for the BRAFV600 gene mutation.

The following algorithm offers a reasonable approach in decision making:

  1. For younger, fit patients without cardiopulmonary comorbidity, high-dose IL-2 remains an appropriate first choice, including patients whose tumors harbor the BRAFV600 mutation.
  2. Ipilimumab is also a reasonable option for those unfit for, or unwilling to get, high-dose IL-2, or whose disease progresses after IL-2 therapy.
  3. Vemurafenib should be considered for patients with BRAFV600 mutation with bulky, symptomatic disease at presentation, or those in whom immunotherapy is contraindicated or has failed (including toxic effects).
  4. Cytotoxic chemotherapy can be used in patients with BRAF-wild type melanoma after failure of immunotherapy, or as a possible bridge to immunotherapy in case of symptomatic disease.
  5. At any point in therapy, participation in a clinical trial is an accepted standard of care.
I'm me, not a statistic. Praying to not be one for years yet.

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KRob's picture
Replies 5
Last reply 1/16/2013 - 3:52pm
Replies by: DeniseK, bikerwife, KRob, POW, Anonymous

Hello all!

It's been some time since I have logged on, but I always keep tabs on and prayers for all here who share the bond of melanoma.

I have had the blessed good fortune of being an (almost) 8-year survivor of stage IV, 24 yrs since first being diagnosed in 1989 as stage I. In that time I have learned so much and understood so little, but I do know that there is hope for each and everyone of us.

I cling to that hope now as I face another possible hurdle in the form of a brain lesion. The MRI was possibly in error, but my docs will rescan in 8 wks to see if there is any change.

Does it get any easier? Sometimes.

Is there ever a time when scans aren't stressful? Nope.

Can someone live with melanoma? Absolutely. No one is a statistic; there is always hope!

My best to all,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Ronskidtexx's picture
Replies 6
Last reply 1/16/2013 - 11:27pm

It has been about one year since diagnosis and surgery for my Stage IV Melanoma.  I had surgery to remove two tumors and radiation treatments to my neck. I had a radical neck dissection along with a flap of my chest.  My second tumor was removed from my ribcage area.   My quarterly scans are in:

 

CT SCAN of Neck--Clean

CT SCAN of Abdomen, Chest, and Pelvis--Clean

Ultrasound of Neck--Clean

MRI of Brain--Clean

 

When initially told I may live a year, pre-surgery, miracles continue to happen.  Don't ever give up.  Don't read all the bad news on the internet.  Everyone's body is different.  I am currently on no meds.  I will continue the fight and I feel for everyone that is going through this horrible disease and experiencing much worse effects. 

 

Ron

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buffcody's picture
Replies 4
Last reply 3/4/2013 - 3:02pm
Replies by: JerryfromFauq, awillett1991, Anonymous, POW

On this and another forum, people talk about getting tested not only for BRAF mutations but C-Kit and RAS as well.  Maybe others.  I know that my insurance allowed me to be tested for BRAF and this was done twice using older and current techniques.  No mutation. Both tests paid for by my insurance.  I've mentioned being tested for C-Kit but my oncologist seems to duck the question.  I have an unknown primary, though it is assumed, I suppose because of likelihood rather than anything strictly scientific, that it was originally skin.  Would it benefit future treatment to know about the other two mutations listed or any others?  Is there any insurance coverage for other tests besides BRAF? I would not hesitate to pay for them out of pocket is they could tell me something significant for further treatment?

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