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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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:   http://fmherbalrx.net/    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 questions...contact 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,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (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: http://www.cancer.gov/clinicaltrials/search/view/print?cdrid=638936&vers...).  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!

Elisa

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/23/2013 - 11:09pm
Replies by: 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.

 

~Kim

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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 Thorocotomy...now "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 begins...living on without him. 

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

http://www.legacy.com/obituaries/dayton/obituary.aspx?n=eric-jerome-sizemore&pid=152880705#.TjwMep5G82E.facebook

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

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=IZ0He2TpNwyduRqOljgzD5oNqwvN9MgSv7B-Omm-nod2fJ-_O4iSxlrs6fO&dispatch=5885d80a13c0db1f8e263663d3faee8d1e83f46a36995b3856cef1e18897ad75

EricNJill in OH

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Brettuss's picture
Replies 9
Last reply 8/11/2011 - 5:52am

 

My wife has what the dermatologist calls an "extremely high" number of atypical moles. Her father had melanoma, Stage III and is still alive and cancer free after 12 years. She went into the dermatologist on July 19th and they did a shave biopsy (I think) on the maximum number of moles they could do, five. Unfortunately, one of them came back positive for melanoma.

This scared the crap out of us. We have a 4 month old son. I can't imagine a future without her. She just became a nurse. We are finally hitting our stride. We are only in our late 20's.  This is insane.  Fortunately, the dermatologist thinks they got it all with the biopsy. Here are the official stats:

Depth of .75 mm, Clark's Level III, no ulceration, no mitotic evidence, margins clear.

They are going in on August 18th to take an extra 1 cm from around the site of the mole. If the tests there show no melanoma cells, and they have said they think it will, she will be given an 'all clear'. Based on the pathology results, there are no plans to do a sentinel node biopsy.

Is this news as good as we think it is? No melanoma would be better, but aside from in-situ, I think these results are pretty good - or am I grasping for something that isn't there? For those with experience, would you suggest pushing for a SNB even though it isn't officially recommended?

This was a huge wake up call to us. Her making her dermatology visit is also a direct result of the "Dear 16 Year Old Me" video, so THANK YOU to the people who posted that video. You probably saved her life.

Are there any of you who track your moles at home? What method do you use?

I want to make sure that we catch every last one of these bad moles right when/if they start.

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mombase's picture
Replies 10
Last reply 8/6/2011 - 2:01pm

This is just a general question, and this might be a figment of my imagine:

Are there lots and lots of folks who have been diagnosed as Stage IV that were declared free of disease years prior? For example, I had a lesion on my back that was fairly deep (can't remember the actual Breslow rating), it was removed and sentinel galns under both armpits were negative for disease.  I was told "congratulations", sent on my way, and no further treatment was advised. Three years later, melanoma brain tumor and lung tumors.

I know "the beast" is sneaky and resistant, but isn't there anything that dermatologists, nutritionists, etc. could advise to maybe alert a person that a certain lifestyle change might aid in helping the body fight off future melanoma?

I am thinking that there are a LOT of folks who are in the same boat. Not that the disease might always be avoided, but that we might have a better chance. I know this is not a medical judjment,  just a personal one!

Cristy, Stage IV

Getter done!

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fgilbert63's picture
Replies 1
Last reply 8/5/2011 - 5:30pm
Replies by: MichaelFL

Just wondering if anyone has heard of this or used naltrexone.

http://www.lowdosenaltrexone.org/index.htm 

Frank

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