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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Kim K's picture
Replies 2
Last reply 3/3/2013 - 2:25pm
Replies by: Colleen66, Phil S

This seems to be a common topic so I will post what we decided to to with me :).

I wasn't able to "graduate" to yearly scans and I understand that.  (Gotta respect ol' Mel, the ultimate enemy).  This is what the new game plan is in light of my NED following IL-2, and the great article on long term survivors who underwent treatment with success.

I will continue to get scanned every 6 months until????, but instead of doing everything I will alternate between whole body CT (without GI contrast - yippee), and PET/CT.  Any small bowel lesions should show up on the PET if missed on the CT without contrast.  My brain MRI's will be done annually instead of every 6 months.

I am so glad to be able to reduce the types and numbers of scans, yet keep an eye on things every 6 months by doing some sort of whole body scan.  This reduces cost, time spent away from home (I fly to Oahu and usually have to spend the night), and exposure to contrast materials and extra radiation, yet still keeps an eye on things twice a year.

Not bad.  Makes sense, great compromise.

My doc and I still don't care for the idea of scan only if you have symptoms, especially in light of the newer drugs and clinical trials.  By the time you have symptoms, you might as well be planning your funeral.  I never had symptoms of stage IV disease, and the only reason my mole was even biopsied was because it was black and began to itch.  IT never followed the ABCDE or ugly duckling criterion.  At most there was the itch and uneven elevation with very subtle asymmetry.

Oh... and I got sort of scolded for not doing more regarding patient advocacy.

1. Our pre-vet club is highlighting skin cancer for our college RFL next week.  I also plan to add our veterinary patients to that as well.  Carole K had some great materials that I have kept for just this purpose.

2. There is upcoming legislation for HI to enact a tanning bill similar to other states that have done so previously.  I may need y'all to blast our legislators when the time comes.

3.  I went to a school meeting to fight against the No sunglasses or hats allowed rule.  It is stupid, NOT sun-safe, and I don't see what the problem is about calling a kid out who's wearing a cap gangster style or wearing sunglasses indoors about the proper ettiquite of hats and sunglasses in public.  I was extremely pissed about no sunscreen in school because you can apply it at home.  (Like the stuff lasts all day?!).  I am currently trying to come up with an idea on how to survey our schools on their sunscreen policy so we can allow for it in school.  Perhaps even develop a sun-safety curriculum.

4.  I wish we would pass all playground equipment be covered by 99% sunproof sails or shades that will protect the play area from 10-3.  Not only will it prolong the lifespan of the equipment and prevent burned backsides on slides, but will encourage excercise.

I have taken on steps 1-3 and am trying to work on 4.  I guess I have to put more effort and voice behind what I have done so others will finally listen.

(Hi Dr. Morita if you are reading this ;O)

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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François's picture
Replies 2
Last reply 3/3/2013 - 10:23am
Replies by: POW, aldakota22

As I said in  my older post, picture of CT Scan  was showing shrinking of lungs nodule. In fact after seeing my onc this week he said that one lung nodule  has disappeared!! and the 2 others are smaller. Great News! The sad thing is that I have an other (which I didn't know) in the groin that is shrinking as well. The onc didn't look much worried about this last one as long as the Zel is working. I asked him why I was not informed of this before and he said sometimes radiologist don't mentioned everything...On the other hand, being long time moving between bed and sofa I gained some weight and a significant increase of cholesterol, uric acid and triglyceride in my blood test as know been detected. I am now taking 40mg at night of Cardil. This is a most common side effect of Zelboral. I will start walking everyday for an hour. Next visit is 19 march to discuss this HDL problem. Next scan will be in May. I'am very satisfied with this early results and keep on with 8 pills a days


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Tim--MRF's picture
Replies 8
Last reply 3/3/2013 - 12:41am

I have learned that we are having some issues with this site.   Some posts take a long time to show up, resulting in duplicate submissions.  And Chat has been a challenge.

I am sorry to hear this is happening.  Chat, in particular, holds a dear place in my heart.  When I first started with MRF I spent a fair amount of time in late night chat sessions and learned a great deal about melanoma and, more importantly, the melanoma community.

I want to assure you that we will get this fixed.  I am pushing the IT person who works on these issues to resolve it quickly.  I had a note an hour or so ago that a fix had been implemented.  Shortly after that I tried to open Chat from three different browsers and none of them worked--clearly a bad sign.

Please hang with us a bit longer and hopefully we can get this resolved soon.  Again, I apologize for this problem.


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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


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.

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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I hope i'm not stepping on toes posting this here but i know there are quite a lot of people from Australia that visit here. We have organised March's in different locations on March 24, to remember those that have passed, Survivors, families and friends unite to increase awareness and raise funds for research.  register and more info

best wishes


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dian in spokane's picture
Replies 12
Last reply 3/2/2013 - 9:55pm

Okay, I'm still awaiting my call from the Specialist for my second opinion visit, and have talked to everyone I can about IL 2. Mostly, the people I have spoken to who have had success with IL 2 have told me that they WOULD do it again. Even some of those who did IL 2 and then had to go on to other therapies.

So..what I'd like is to hear from everyone here who has done IL 2, when you did it, if you did it alone or with TIL. If you'd do it again.





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Bunmom's picture
Replies 18
Last reply 3/2/2013 - 9:42pm

The melanoma oncologist I saw yesterday recommends complete axillary dissection for my stage 3a, as I had micromets of 0.1mm to one SLN.  The surgeon who did the WLE and SNB told me before I saw the oncologist that he wouldn't recommend it because of lifetime risk of lymphedema, infection, and inability to fully utilize my (dominant) arm. 

I looked online at some of these complications and I'm freaking out. Now I don't want the axillary dissection! 

I asked about ultrasound monitoring, but was told that by the time the node swells enough to see on ultrasound it has probably spread to other parts in the body. 

I see the chances of developing lymphedema range from 15-50%, depending on which site you read. So has anyone NOT developed this after a dissection? If so, what do you think the reason is? 

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AllyNTAus's picture
Replies 7
Last reply 3/2/2013 - 9:20pm

Hi everyone,
Looks like my time on Dabrafenib monotherapy might be coming to an end, my recent gallbladder met has now been closely followed by a small met behind my left eye (hopefully starting a short course of radiotherapy later this week to try and deal with this).

My doctor has advised me that there is a slot opening up in the Novartis combi trial that he would like to try and get me into, I am very keen as I think adding the MEK inhibitor might help with the apparent resistance issue and give me some more time. I am aware the study is pretty intense in its time demands but I am ok with dealing with that.

I am interested in knowing how anyone is finding the drugs in terms of any side effects and effectiveness, and how long people have been on the treatment without progression in their disease.


A bad day's fishing beats a good day's work everytime

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Bunmom's picture
Replies 6
Last reply 3/2/2013 - 8:47pm

I had a 0.97 mm, Clark's IV removed 3 weeks ago, and followed up with wide excision and SNL. SNL showed micromets (0.1mm) in one node. I don't see the melanoma specialist till Wednesday but am looking at options he may suggest. The surgeon told me complete lymph node removal does not show a better outcome, and has some side effects. But I see that a lot of people have this done. Just having the SNL surgery really made me swell and I'm still very sore 2 weeks post op. 

Does anyone know the current recommendations? Axillary radiation? 

I'm looking at Interfueron as well, but was told by the oncologist that it only works 5% of the time. I guess I'll look at clinical trials, then? 

Does anyone just leave it all alone and hope it's all been removed? 

Not sure what to do. 

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Littlea41's picture
Replies 7
Last reply 3/2/2013 - 8:45pm

Hello. New to the site.

About 1 week and 1 day ago I had a punch biopsy of a "cute" (or so I thought) little mole that popped up on my wrist. I was tired of listening to everyone yell at me to get it checked out so I finally did. This past Monday as I was pulling into work the dermatologist called me back with results- I have melanoma in situ.

I immediately was scheduled for an appointment to complete a whole body scan. He found a suspicious mole on my back and ended up shaving that one off for a biopsy. He also took my "life long" mole on my temple.

As far as I can remember I've always had my temple mole. About 2 years ago it started bleeding and I thought nothing of it- thought maybe I scratched it open while sleeping or something. Melanoma wasn't a term in my vocabulary and although it crossed my mind to "probably" get it checked out- I never did.

Now here I am- 27 years old with melanoma. I know I'm damn lucky it's only in situ but as I sit here waiting for the biopsy for my temple mole I can't help but feel scared. I'm a absolute wreck. When he started asking me about my temple mole I could feel my stomach drop. I could sense the panic in his voice, the way he summoned the nurse, the way he tried to cover up his nervousness when I started picking up on it.

I've got 4 stitches in the side of my head. A consistent reminder that my life may never be the same. I feel sick to my stomach. Believe me, I'm not intentionally trying to feel sorry for myself- I know far more melanoma patients are way worse then I am.

I'm just a 27 year old girl lost in a sea of unknown. Just curious how you seasoned folks get through the wait.

Waiting until Mar 19 to see a skin cancer doc to finish the surgery on the wrist.

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akkcak's picture
Replies 6
Last reply 3/2/2013 - 8:41pm

Just found out i have a 4mm spot in my brain that is near the thalamus. Was told it is too deep to biopsy. I don't see dr until next week. Am i looking at srs? What about other treatments in conjunction with it? Can't do yervoy. Other options?


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dolphin5's picture
Replies 3
Last reply 3/2/2013 - 7:45pm

I am pleased to say my wife made all five days of BioChemotherapy at Kaiser Riverside under the care of Dr. Gailani.  She did experience all of the side effects except the nasua.  But what I will say is that the staff keep it all under control and were top notch.  We now have two weeks off to regroup and then back for round two.  I would like to thank everyone who responded to our numerous questions in regards if we were going in the correct direction.  We beleave we did. 

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1 March 2013 Last updated at 21:40 ET


Skin cancer 'able to fight off body's immune system'


A deadly form of skin cancer is able to fend off the body's immune system, UK researchers have found.

Analysis of tumour and blood samples shows that melanoma knocks out the body's best immune defence.

A potential test could work out which patients are likely to respond to treatment, the Journal of Clinical Investigation reports.

Cancer Research UK said the body's response was a "complex puzzle".

Previous work from the team at King's College London showed that while patients with melanoma produced antibodies that could attack tumour cells, the immune system often seemed powerless to stop the cancer progressing.

But in the latest research they discovered that the subtype of antibody attracted by the melanoma cells was the most ineffective at mounting the right sort of response.

In samples from 80 melanoma patients they say that the conditions created by the tumour attract IgG4 antibodies, which mount the weakest response and in turn interfere with any "strong" IgG1 antibodies that might be present.

"This work is still at an early stage, but it's a step towards developing more effective treatments for skin cancer”

Dr Kat Arney Cancer Research UK

By mimicking the conditions created by melanomas, they showed that in the presence of tumour cells, the immune system sent out IgG4 antibodies, but when faced with healthy cells it functioned as expected with IgG1 circulating.

They also confirmed that IgG4 was ineffective in launching an immune attack against cancer cells.

Potential test

In additional tests in 33 patients, they found that those with higher levels of the weak antibody IgG4 had a less favourable prognosis compared with those with levels nearer to normal.

Study author Dr Sophie Karagiannis said: "This work bears important implications for future therapies since not only are IgG4 antibodies ineffective in activating immune cells to kill tumours but they also work by blocking antibodies from killing tumour cells."

She said not only was IgG4 stopping the patient's more powerful antibodies from eradicating cancer, but it could also explain why some treatments based on boosting the immune response may be less effective in some patients.

Co-author Prof Frank Nestle said more work was needed on developing IgG4 as a potential test to improve patient care by helping to identify patients most likely to respond to treatments.

"This study can also inform the rational design of novel strategies to counteract IgG4 actions," he added.

Dr Kat Arney, science communications manager at Cancer Research UK, said: "There's a lot we don't yet understand about how our immune system recognises and responds to cancer, so we're pleased to have supported this new research that's helping to solve such a complex puzzle.

"This work is still at an early stage, but it's a step towards developing more effective treatments for skin cancer and potentially other types of cancer in the future."

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JerryfromFauq's picture
Replies 1
Last reply 3/2/2013 - 12:23pm
Replies by: Janet Lee
I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 2
Last reply 3/2/2013 - 10:57am
Replies by: awillett1991, Tim--MRF

Pediatric melanomas often present with features that are clinically and histopathologically different compared with those in adults, and atypical presentation may delay diagnosis. Results of this retrospective study indicated that the ABCD criteria alone are inadequate for detecting melanoma in children, and the investigators proposed that additional ABCD criteria (Amelanotic; Bleeding, Bump; Color uniformity; De novo, any Diameter) be utilized as well, acknowledging that the specificity and sensitivity of these criteria must be validated.

Melanoma has become the “Great Obsession” for many dermatologists because too many young healthy people die because, one, they do not understand the hazards of tanning and, two, do not know the significance of the “ugly duckling sign,” the ABCDs of melanoma, and, most importantly for the diagnosis of early melanoma, the importance of showing their physician any “E”—evolving or changing mole. It is part of our job to educate the public about these issues.

A recent article by Cordoro et al complicates this matter a bit. We have always known that melanomas do not always show classic features to promote early identification; hence, the importance of identifying any evidence of evolution or change. In pediatric melanoma, a significant majority of lesions fail to show ABCD criteria, which commonly causes a delay in diagnosis. In a study of 70 pediatric melanoma patients, many of the lesions were amelanotic, arose de novo rather than representing a change in a mole, had uniform color, and often were smaller than a pencil eraser. Bleeding was a key finding. While melanoma in children is rare, unusual pigmented lesions should be either examined with a dermatoscope and/or biopsied. 


Background: Clinical and histopathologic features of childhood melanoma are poorly characterized. Atypical clinical presentations and ambiguous microscopic findings may contribute to diagnostic delays.

Objectives: We sought to determine whether conventional ABCDE melanoma detection criteria (Asym- metry, Border irregularity, Color variegation, Diameter [6 mm, Evolution [any morphologic or sympto- matic change in the lesion]) adequately detects pediatric melanoma and to evaluate clinicopathologic and outcome differences between younger and older children.

Methods: This was a retrospective study of children given the diagnosis of melanoma (N = 60) or ambiguous melanocytic tumors treated as melanoma (N = 10) before age 20 years from 1984 to 2009 at the University of California, San Francisco. Seventy patients were divided into 2 age groups: 0 to 10 years (N = 19, group A) and 11 to 19 years (N = 51, group B). Clinical, histopathologic, and outcomes data were collected. Main outcome measures were time from diagnosis to death and predictors of metastasis and death.

Results: In all, 60% of group A and 40% of group B children did not present with conventional ABCDE criteria. Rather, amelanosis, bleeding, ‘‘bumps,’’ uniform color, variable diameter, and de novo develop- ment were most common. Histopathological subtypes differed significantly between groups (P = .002). In all, 44% were histopathologically unclassifiable using current melanoma subtypes. Stage IIA disease or higher comprised 92% and 46% of groups A and B, respectively (P = .05). Ten patients died: 1 in group A and 9 in group B. Of these, 70% had amelanotic lesions, and 60% had at least 1 major risk factor. Breslow thickness predicted metastasis (adjusted odds ratio 12.8 [CI 1.4-115]).

Limitations: The retrospective design resulted in incomplete data capture.

Conclusion: Additional ABCD detection criteria (Amelanotic; Bleeding, Bump; Color uniformity; De novo, any Diameter) used together with conventional ABCDE criteria may facilitate earlier recognition and treatment of melanoma in children.

I'm me, not a statistic. Praying to not be one for years yet.

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