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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MaryBeth and Jeff's picture
Replies 25
Last reply 8/15/2011 - 1:19pm

The love of my life lost his battle with the beast tonight at 0200 Aug 8, 2000.

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aynw's picture
Replies 3
Last reply 8/10/2011 - 2:33pm

I have done a number of searches and have been unable to find any others who have encountered this, but am sure there are.  If so - I'd like to hear from you. 

I started the high dose interferon June 22.  First week labs showed elevated liver function and low neutraphils - both outside of the acceptable range, so oncologist put me on a 1 week break and reduced the dose by half.  I was put on 1 week breaks after 2nd week and 3rd week, again because my neutraphils were too low.  Throughout, I was generally feeling fairly well, considering some of the side effects others have reported.  When I went in to see the oncologist last week he advised that he is terminating the interferon treatment as he doesn't feel it is safe, and that I will get into trouble very quickly once I start the injections.  I was surprised and disappointed...I know many don't complete the year, but I hadn't heard of anyone who wasn't able to get through at least the high dose round.  Has anyone else encountered this?  Are there any other options for me other than wait and watch?

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AZ_Gal's picture
Replies 4
Last reply 8/8/2011 - 1:19am

Ok, I know this topic is for mainly women but I wanted to see what anyof you have done to deal/cope with the uneven breasts after and SNB.

I used to be a perfectly even C cup now the side that they removed my 4 lymphnodes is significantly smaller than the other side.



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Erica A's picture
Replies 4
Last reply 8/8/2011 - 8:50am

Per suggestion for some encouraging stage IV news I am happy to report that my husband Ken had his 6 year NED anniversary this summer from stage IV!  Ken did the standard bio-chemo treatment at the time and all the details are in my profile.  It was a long journey, but today other than the once a year oncologist appointment and the physical scars - Ken is able to live a completely normal and cancer-free life.  I was always on this board when Ken was sick desperate for anyone who had survived stage IV cancer - I am hear to tell you that they do and you can.  There is always hope and people do go on to return to their lives.  Our thoughts are always with this community, feel free to email me any time with questions or just for support - we've been there and we understand.  Erica & Ken

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I spent the past few days at the NC Mutual Drug Show and sat in on my husband's CE seminar. The topic was treating vascular disease with compression and the presenter owns the pharmacy this link is for. His store is in Texas and he's the pharmacist there...educated as a pharmacist and "certified in Phytomedicinals (plant-based medicines) and Alternative Medicine by A.N.M.P." He practices an integrative pharmacy and is innovative in that.

All that to say that I learned quite a lot just from what he said about what he's seen work in herbals and alternative meds. Being a pharmacist, he also knows what to avoid, how things mix, etc.

His store:    Flower Mound Herbal  Pharmacy in Flower Mound, Texas. He plans to expand what he offers about this topic in the next few months; right now, not too much is there, BUT, I pass this along because he is qualified to discuss this and invites contact and info on website. So many on here have questions about this and are trying things, I want you to be as safe as possible and would suggest contacting Dennis Song at this store.

A couple of things interesting: he did stress talking with your pharmacist about any supplements to check for interactions. Getting people's opinions about these things may not be the best step, you need to know about possible interactions.

Since we have to be concerned about our immune systems, I took note when he said elderberries are really good for boosting it and for lowering blood sugar.

He also gave the 4 supplement brands he sells: Metagetics, Life Extension, Ortho Molecular, and Xymogen.

If you're experiencing vascular problems try: grape seed extract, Butchers Broom, Horse Chestnut Seed Extract, Blueberries, Red Wine, Elderberries, Sweet Clover, Pycnogenol. Discuss low level compression with your dr.

And, a final tip: don't read the front label of bottles, read the back label...that's where you'll find the nutritional content.

I'll be the first to admit, I considered this stuff equal to quackery before hearing him and talking with him after the seminar and learning his credentials. I learned to be more open, but only to what someone, like him, says. I feel he's qualified. He backs up what he does with studies and what he's seen work through the years. I actually invited him to come on here sometime because this is discussed and questioned sometimes.

If folks are going to go this route, I want you to be as safe as possible, there's so much junk out there that preys on our fears. Hope this helps.

Grace and peace,


Life's short. Eat dessert first. (This blog post contains links to my story).

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Erica A's picture
Replies 6
Last reply 8/17/2011 - 3:50pm

My husband is Stage IV, NED 6+ years now.  Only follow-up treatment he has these days are yearly liver panels and a chest x-ray.  Oncologist called last week that his liver panel came back abnormal - they are going to retest and said not to worry because they think it's probably a lab error.  Hmmm.  As a stage IV cancer patient we are used to some bumps in the road that turn out to be nothing, but have never had a lab error anywhere else - does this really happen?  Has this happened to anyone else?  Trying not to worry, but obviously a little concerned.  Thanks - Erica

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Becky C.'s picture
Replies 7
Last reply 8/16/2011 - 6:07pm

Hi, I was hoping to get some more feedback from anyone who has had a groin dissection.  I heard from one person who said they did get lymphadema. I am planning on having the surgery next week, I am really worried about lymphadema but i think it is the only way to know if all the cancer is gone. I have read that about 10 to 15 percent of patients who have this done get lymphadema. I appreciate any feedback.

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JerNYC's picture
Replies 5
Last reply 8/8/2011 - 3:14pm
Replies by: Anonymous, JerNYC, Angela C, MichaelFL

I am new to the community, although I have read postings from time to time that have proved very helpful. However I cannot find an answer to a question I have about scans ...

I have just completed the first round of MDX-1106 (1mg/kg, 4 infusions) and was scanned last Thursday. I was unable to get the results from my Dr as he was out on vacation. However I had a radiologist look at the images and he thinks my disease has grown (each of the diseased nodes are 20-30% larger).

As I understand it, progress with mono-clonal antibodies can take time, and I have also heard talk of the Ipi "flare" phenomenon, and am curious whether a similar possibility exists with MDX-1106. I wondered if anyone could shed any light on how conclusive the first scan is for this type of treatment. I'm keeping an open mind right now, as I feel good physically, but to the extent this scan reduces the odds of an ultimately good response to the drug I want to scratch my head a little more about my possible next steps.

Thank you.

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AZ_Gal's picture
Replies 5
Last reply 8/9/2011 - 1:00pm
Replies by: Tad, nicoli, MariaH, washoegal, Janner

I know my doc said that some numbness around the excision and snb are normal but is it normal to have numbness in my entire shoulder? My wle was in the middle of my back between my shoulder blades and my snb was in my left auxilla (armpit). Help?!


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eaca's picture
Replies 2
Last reply 8/7/2011 - 7:08pm
Replies by: Anonymous, FormerCaregiver

I put up a post a few weeks ago mentioning briefly this option, but now it looks like I have fulfilled the criteria and need to make a call on whether to participate in this clinical trial combining Pegylated Interferon and Melanoma Peptide Vaccine (for details see:  I have pretty much decided to do the Pegylated Interferon anyhow, and so the question is whether to go ahead and do the vaccine as well in this trial.  I will be meeting with my doctor in 10 days to make the final call and would like advice as to what detailed questions I should ask.  I've read the clinical trial brief, but that's obviously very high level and this is my first experience thinking about participating in a trial.  Any advice from those who have done trials or looked at trial options would be greatly appreciated!


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Anonymous's picture
Replies 4
Last reply 9/19/2015 - 1:49am
Replies by: Anonymous, MattF, Karin L, Pekoe

For those of you who have been stage II melanoma 3.2mm(intermediate thickness) and had a neg sentinel nodes what does your doctor do to check lymph node basins? I'm also curious if any of you were stage 1 or 2 and then had recurrence in lymph node and became stage 3 what did that node feel like? My doctor says I have some prominent nodes in my groin where the removed the sentinel node. I know there r many things that cause swollen nodes but have any of you ever had swollen nodes that can be felt about the size of a marble to grape size but hard. Thanks for your input in advance.

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nicoli's picture
Replies 12
Last reply 8/11/2011 - 9:56pm

I am NED as of March, when I had my last surgery.

This past week and a half I've had bronchitis and lots of coughing. Then came the neck pains. Fairly painful shooting pains in my glands behind my left ear and jawline.  The right side of my neck had the lymph nodes removed in 2010 and I have had no problems with the left side of my neck. Until now. This was NOT muscle, NOT bone, what else could it be but glands? 

So I said, I will not freak, I will not freak. It could be related to the coughing. (Note: I have had bronchitis at least 15 times in my life and NEVER had any kind of neck pain). Not every ache and pain is the cancer returning. But I was freaked.

Told myself to wait until Monday and if the pains were still coming I would call the onc for an appointment.

WAHOOOOOOOOOOOOOOOOOO. The pain is gone as of yesterday afternoon, as is most of the cough!!!!!!!!!!

My next PET is end of this month. I can do this thing.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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AZ_Gal's picture
Replies 8
Last reply 8/8/2011 - 2:52pm
Replies by: MichaelFL, Anonymous, mombase, AZ_Gal, lhaley, nicoli

I had my SNB and WLE on Friday August 5th. Things went well according to my husband. I don't remember much.


They took out 4 lymph nodes in my axilla. 3 had the radio active dye in them one and tattoo ink. (i have 5 tattoos) I can grantee that I will be getting no more tattoos!


They say I should have my results by Wednesday the 10th. Cross your fingers!


For now I'm in an Oxycodone daze and sleeping quite a bit.


Thanks for all you support guys! I really appreciate it.



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Combo Therapies Tested to Overcome Drug Resistance in Melanoma Patients

ScienceDaily (Aug. 4, 2011) — About 50 to 60 percent of patients with melanoma have a mutation in the BRAF gene that drives the growth of their cancer. Most of these patients respond well to two novel agents being studied in clinical trials that inhibit the gene, with remarkable responses that are, unfortunately, almost always limited in duration.

In a study published August 2 as a Priority Report in the peer-reviewed journal Cancer Research, scientists at UCLA's Jonsson Comprehensive Cancer Center tested a combination of small molecules that may, when used with the BRAF inhibitors, help overcome this drug resistance and extend the lives of those with advanced melanoma.

The team, led by researcher Dr. Roger Lo, focused on testing only small molecules that are already being studied in various phases of clinical trials in the hope of developing a combination treatment that can be studied in patients much more quickly than compounds that aren't yet being tested in humans.

"These molecules we tested are already being studied in patients with other cancers, and some of them have very good toxicity profiles with few side effects," said Lo, a Jonsson Cancer Center researcher and an assistant professor of dermatology and molecular and medical pharmacology. "The idea was to combine some of these with the BRAF inhibitors and come up with something that we don't have to wait years and years to use in patients. We need to find a way to combine these molecules so the cancer cell cannot get around them."

This study builds on the discoveries from a previous study published by Lo last year in the journal Nature. That study found that subsets of melanoma patients with BRAF mutations become resistant to BRAF inhibitors through either a genetic mutation in a gene called NRAS or the overexpression of a cell surface receptor protein.

It had been theorized that BRAF was finding a way around the experimental BRAF inhibitors by developing a secondary mutation in the same gene. However, Lo determined that was not the case, an important finding because it means that second-generation drugs targeting BRAF would not work and therefore should not be developed, saving precious time and money.

Lo and his team spent two years studying tissue taken from patients who become resistant to try to determine the mechanisms that helped the cancer evade the inhibitors. In the lab, they also developed drug resistant cell lines, in collaboration with another UCLA lab headed by Dr. Antoni Ribas, also a Jonsson Cancer Center researcher. There are still other mechanisms of resistance in melanoma patients with mutated BRAF who are treated with BRAF inhibitors, which UCLA researchers are seeking to uncover and that may provide even more targets for drug therapy. Cancer operates similarly to a criminal seeking to evade his captors, and the small molecule inhibitors are like the police barricades that seek to block escape. When one of the cell signaling pathways driving resistance is blocked, the cancer finds a way to activate another pathway that will drive its growth. If that pathway is blocked, yet another pathway may be activated. The goal is to find a way to block all the pathways helping the cancer evade therapy at once so the cancer cells die before finding a way around the drugs.

In the lab, Lo and his team would apply one drug at a time to the resistant cancer cells and see what route or pathway the cancer used to escape. They then determined what pathway was being used to evade therapy and found an inhibitor for that. In the end, the researchers identified the most optimal combination of molecules to block the pathways PI3K, mTORC and MEK.

"Normal cells have physiologic safety mechanisms to avert death and this is taken to a higher level by the cancer cell to serve its growth agenda, making single agent targeted therapy insufficient," Lo said. "We have to block several roads, which is what is behind our approach to developing combination therapies. The key was to figure out how to combine the molecules so that the cancer cannot get around them. Why wait for the cancer to escape? Let's block all the pathways right from the start."

Lo said this study highlights the need not only to identify mechanisms of acquired resistance to targeted inhibitors, but also to understand the signaling network associated with each mechanism to generalize potential translatable approaches to overcome drug resistance.

Once the right combinations of drugs were used together, the inhibitors "consistently triggered cell death in a highly efficient and consistent manner," the study states. "Together, our findings offer a rational strategy to guide clinical testing in pre-identified subsets of patients who relapse during treatment with BRAF inhibitors."

Lo said a clinical trial could be planned that first examines the patients' cancers to identify the resistance mechanisms at play. Those patients could then be funneled into a study pairing the inhibitors that target those specific pathways. Patients with other resistance mechanisms at work would be placed in studies testing inhibitors specific to their resistance mechanisms.

The next step, Lo said, is to identify all the mechanisms of resistance in this form of melanoma.

According to the American Cancer Society, melanoma incidence rates have been increasing for at least 30 years. This year alone, more than 68,000 Americans will be diagnosed with melanoma, with 8,700 dying from their disease.

The study was funded by Wesley Coyle Memorial Fund, Ian Copeland Melanoma Fund, Wendy and Ken Ruby, Shirley and Ralph Shapiro, Louise Belley and Richard Schnarr Fund, National Cancer Institute, STOP CANCER Foundation, V Foundation for Cancer Research, Melanoma Research Foundation, Melanoma Research Alliance, American Skin Association, Caltech-UCLA Joint Center for Translational Medicine, UCLA Institute for Molecular Medicine, Sidney Kimmel Foundation for Cancer Research, Stand Up to Cancer/American Association for Cancer Research, Fred L. Hartley Family Foundation and the Jonsson Cancer Center Foundation.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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EricNJill's picture
Replies 4
Last reply 8/6/2011 - 1:53pm

These last two days have been unbelievably painful for me.  I miss him so terribly.  I am glad that he is at peace and rejoicing in heaven.  Now my battle on without him. 

Thank you all for your prayers and support during our journey.

Because I was asked, here is a link to the Paypal Fund set up for our family.

EricNJill in OH

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