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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Michelem's picture
Replies 15
Last reply 12/22/2016 - 9:41pm
Replies by: tag4128, POW, Lil0909, Michelem, kylez, Anonymous, BrianP, JerryfromFauq

My husband has just had his second surgery to remove more lymph nodes from the groin area. He had surgery on a melanoma of his foot and cancerous lymph glands removed in October. He was being screened for a randomized interferon/ipi clinical trial, but the PET scan lit up, leading to this new surgery. Surgeon found that the cancer was more extensive in additional nodes and groin area than anticipated.

At this point, I am uncertain if we are still Stage III, or if this is now considered Stage IV.

We are in Sacramento. Our surgical ocologist has now said it's time for us to see a doc in San Francisco. I see that there are several "melanoma clinics" in SF, but are these considered to be "centers of excellence" for melanoma?  We are likely to be referred to a melanoma specialist at California Pacific Medical Center. It is hard for me to tell if this is truly considered a "center of excellence" for melanoma - can anyone please advise?

A complication for us is that these operations have left my husband with severe lymphedema of the leg, so getting on an airplane to get to a more distant clinic would be problematic.

Thanks for your thoughts! 

MicheleM

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hannahcopeland1's picture
Replies 15
Last reply 1/13/2014 - 11:00am

Hello guys, 

From what I've read so far, the switch from Zelboraf to the new BRAF/MEK combo is a big improvement for people. It makes me really happy to see that and I'm hoping it will be a good thing for me.

I still want to know more though!

I started taking Zelboraf as part of a trial to combine it with IL-2 treatment. I since have opted out of the IL-2 for now and am investigating other options. Im still on Zelboraf and have been since November 4th, 2013. 

So far the Zelboraf has worked really well. We have seen a significant decrease in the size of my large lung tumor, which at the moment is the only location of melanoma that can be seen. Ideally it would keep shrinking until it was a size appropriate for a safe surgical removal, but we dont know if thats possible yet. 

Anyways, I have experienced a lot of the unpleasant side effects that come along with Zelboraf. I wasnt handling the full dose well, so my doctors reduced it to 6 pills/day which did help. I'm still dealing with sporadic and sometimes extreme joint pain, lumps under my skin, fatigue, now hair loss and the everlasting sun sensitivity. 

What I'd like to know a little more about are the side effects involving hair loss and sun sensitivity in the new combination.

I've heard it helps with alopecia and this excites me. I have a thick head of hair, but its thinning more and more each day. My eyebrows and eyelashes are very thin. I would love to save my hair if at all possible! Has anyone had success with this or had hair gain after switching?

The worst side effect for me is the sun sensitivity. Ive been this way about 3 months now and with the winter months it has been a little easier, but it wont be winter forever, and i love being outside. I have even been burned while being inside my house. Can anyone tell me if and how this improves with the combo? Does it completely get rid of it? Or just make is less? Or not at all? 

Thanks in advance for any and all responses!

Im hoping to do the switch within the next few weeks.

Best, 

H

Hannah Copeland

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lucy3's picture
Replies 2
Last reply 1/12/2014 - 7:56pm
Replies by: Anonymous, JerryfromFauq

Hello all.  Anyone out there have information of this trial offered at Vanderbilt and MSK?   I have appointment next week in New York.  Have been researching this as well as their trial using attenuated dendrite cells as a vaccine to be used intradermally.  I am stage 3 B and refused the interferon arm of interferon vs ipi in my local area.  Any info appreciated re both therapies would be appreciated.  Lucy3

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Yvonne.D's picture
Replies 6
Last reply 1/11/2014 - 4:23pm
Replies by: Yvonne.D, BrianP, WendyD., Linny

Good morning.

I have a question for anyone who would like to help.

I was diagnosed back in November with Melanoma. I had my WLE done last week. I did not have the SNB done. My surgeon did check my lymph nodes in my groin area that day as the Melanoma is on the left thigh. She did not feel anything. Yesterday I pressing against my vanity when looking in the mirror and felt discomfort in my groin area. Felt on my left side and there is a pea sized lump there. Of course my mind goes right to the worst place. I have been suffering the last 2 months with a tailbone issue and then did something to my lower back/buttock area left side, like I put my back out(I sound like my mother now!) Or pulled a muscle 3days ago. So that side is in bad shape already.

I am just wondering if anyone had lymph nodes swollen in that area that was not melanoma or experienced anything like that? My WLE was on the 31st of december. Could it happen that fast after her just checking my groin and felt nothing? I know it is unpredictable and anything I am sure can happen, just wondering peoples thoughts.

Monday can't come fast enough to call my Dr. Or should I just go to emergency and get someone to check it there. I don't want to be over paranoid all the time but it's so hard not to be now.

Thoughts anyone?

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jmccay's picture
Replies 4
Last reply 1/15/2014 - 7:36am
Replies by: POW, jmccay, Janner

Hi Team,

My mother is meeting with Docs next week (Jan 17) with the option to start ipi / Yervoy.

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  She is 73 so this treatment is the only option.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!
James

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Julie in SoCal's picture
Replies 5
Last reply 1/14/2014 - 7:24am

Hi there Friends!

I'll be starting ippi this coming Wed (15 Jan).  I will be listening to my Dr and communicating well with them, have you all learned any tips or tricks for getting through this?  What is the general knowledge?  Advice? 

Thanks!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/11/2014 - 12:35pm
Replies by: Anonymous, aldakota22, Richard_K

May be moving to CT. Does anyone have any input on Yale Cancer Center as a melanoma center.Has anyone any first hand experience there.May it be good or bad would appreciate your input.Any doctors should I seek.Thank you.

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Hey Friends,

An update on my husband Scott's status:
Scott received 6 doses of Nivolumab, but only 2 of 4 scheduled doses of
Ipilimumab while on the BMS Nivo/Ipi trial at UVA. (The last dose
administered on October 30th, 2013). He was unable to receive the final
two, as his liver AST and ALT levels were vascillating between Grade
2-Grade 4 adverse effect reaction. Corticosteroids (prednisone) were
begun in mid-November 2013 (after a very odd 4-day
hospital-stay-requiring and as-yet-still-undetermined high fever
episode in Los Angeles). We saw results and began tapering (with the
hopes of rejoining the trial protocol as soon as levels equalized).

Scott's scans of December 27th revealed yet another 50% reduction in
his lung tumor size in the two more formidable locations...the largest
of which is now a mere 4.5mm, the smaller 2.5mm! One has resolved
nearly completely...and a few others seem "dead in the water,"
unchanged in nearly a year!

However, his bi-weekly lab work this week revealed his liver levels (at
our tapered down to 60mg a day dose) ascended DRAMATICALLY to nearly
14x the norm. Our fantastic oncologist, Dr. Grosh at UVA immediately
has bounced us back to a full 200mg daily, and Scott consulted (at Dr.
Grosh's behest) today with liver specialist Dr. Caldwell at UVA. We're
looking forward to seeing a perceptible drop in AST & ALT tomorrow when
we do labs. Our fondest hope is to rejoin the BMS trial with two years
of "maintenance" Nivolumab once his liver is "back to normal," as it
clearly is working so well for Scott and so many others.

We wanted to bring you all up-to-speed---as well as to see if you have
any insight/advice into this profoundly stubborn liver reaction to the
sequential Nivo/Ipi combination.

WIshing us all health and happiness and hope-
Cheryl Lage
Wife of Scott, Stage IV since Feb 2012
(Diagnosed in 2005 at 2a, 4 recurrences---surgeries, radiation, 27 bags of IL-2, two clinical trials and scans beyond counting and he's here and FIGHTING and LIVING!)

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http://www.integrativeoncology-essentials.com/2013/03/is-there-any-other-anti-cancer-botanical-compound-as-exciting-as-curcumin/#sthash.Ab5ttvQf.dpuf

One might want to read the whole article.  MD Andeeron has written on the benefits of Curcumin.

 

One of the interesting findings:  
Curcumin Acts Synergistically With Chemotherapy and Radiation Therapy:

    Increases tumor cell sensitivity to chemotherapy and radiation therapy
    Protects normal tissues (liver, kidney, mucous membranes, heart, etc.) from radiation and chemotherapy injury
        One recent study demonstrated a significant reduction in radiation dermatitis (skin inflammation) in patients who received curcumin during their radiation therapy for breast cancer. Patients received either oral curcumin (2 gram tablets, taken 3 times per day) or a placebo. The authors reported that the patients taking the curcumin had dermatitis reactions that were on average 31% less than those taking placebo. One of the most impressive findings in this study was that the women taking curcumin had a marked reduction in their risk of developing severe skin reactions (called “moist desquamation”) compared with those taking the placebo; 28.6% (curcumin) versus 87.5% (placebo).

- See more at: http://www.integrativeoncology-essentials.com/2013/03/is-there-any-other...
http://www.integrativeoncology-essentials.com/2013/03/is-there-any-other...
 

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

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WendyD.'s picture
Replies 4
Last reply 1/12/2014 - 12:39am
Replies by: WendyD., Janner, Bubbles

I finally got to see a dermatologists and got my skin checked. Well, once the derm seen all of my path reports she suggested that I might have to have MOHS Surgery because she felt my margins weren't big enough. My melanoma was quite thin and the intial biopsy itself had clear margins. Then I had my WLE done and it came back completely clear as well. Why in the world would I have to have MOHS done? Then while she was checking me she marked two more places on my back and done shave biopsies on them. Why would she do that knowing my history with melanoma? Shave biopsies can alter my results if it comes back as melanoma. Grrr!! Well, on another note I did request for them to get my slides and let a derm path look at my intial biopsy which they are going to do. I definitely wanted a second opinion on that. But from my knowledge unless these other biopsies come back melanoma they only want me to come back at 6 month intervals. Is that normal? Also I did finally convince my doctor to excise the abnormal lesion as well and I believe they said everything came back ok on that. I guess I'm just confused on everything. She don't think I need 3 month follow ups but I need MOHS surgery? Has anyone else had this to happen to them before? Also I know Clark's level isn't used a lot anymore, but I am kind of curious what mine was or do they even check that anymore? I know I read something about if it is level iv that AJJC will put it in their system just not on the actual path report. I don't know everything is so controversial on some of these sites you never know what to believe. I want my life back! I have read other people's stories how melanoma was all they thought about once they got their diagnosis, and I understand completely cause I have done the same. It's almost like I'm afraid to be happy because I feel like it could be short lived by a recurrence or by me finding out it had already spread without me knowing it. Oh and by the way every back pain, headache, or any other pain I have now is melanoma( not really but that's what comes to my mind now). Where before I would count these things as oh well I'm getting older and stiffer. Or wouldn't pay much mind to them. Now I'm thinking should I get an x-ray or something? Or just ignore it cause I couldn't handle the diagnosis anyway? When I first was diagnosed and realized the low risk lesion I had I was relieved and felt very optimistic. I mean 95% or higher survival seemed pretty good. But now my thinking has gone to what if I'm the 2-5% that becomes a statisic? Thanks for letting me vent, because I don't feel like I can do this with my family. I have to put a smile on my face as if this never happened and like I'm going to out live Methuselah (which was the oldest living man in the Bible for those who didn't know). Well, I guess I might need some sleep sometime today. Good Night For Now.

In God I Trustsmiley!

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Replies by: BrianP, kylez

http://www.theaustralian.com.au/news/latest-news/blood-test-to-tackle-me...

A SIMPLE blood test could identify those patients whose melanoma - the most serious form of skin cancer - has started to spread to other parts of the body, according to new research.

The test allows scientists to examine DNA shed from cancer tumour cells into the bloodstream, in particular a gene called TFP12.

The gene usually helps stop healthy skin cells growing out of control, which can potentially lead to cancer.

But in melanoma patients this gene is switched off because of the presence of chemical "tags" known as DNA methylation.

Experts behind the test found that higher levels of DNA methylation suggested the cancer had spread around the body.

Early stage tumours had relatively low levels of DNA methylation, while advanced cancers (those that had spread) had much higher levels, suggesting the gene was more tightly shut down.

Measuring levels of methylated TFP12 in DNA in the blood could help doctors work out whether the disease has spread and what treatments may be needed.

Dr Tim Crook, study author and a consultant medical oncologist based at the University of Dundee, said: "Once melanoma starts to spread it becomes far more difficult to treat. But actually detecting whether or not it has started to spread is also challenging.

"By using a blood test, we have the basis of a simple and accurate way of discovering how advanced the disease is, as well as an early warning sign of whether it has started to spread....

"There's increasing evidence that the latest treatments are more effective in these early stages and, if we can identify patients whose cancer has only just started to spread, this would significantly improve the chances of beating the disease."

The same Dundee researchers have identified another potential biomarker - NT5E.

This gene appears to become methylated and switched off as melanoma first develops. But if NT5E becomes unmethylated again, the gene is reactivated and helps the disease to spread more aggressively.

The researchers suggest that NT5E could be a possible target for the development of new treatments to tackle melanoma, particularly for aggressive cancers that have spread to the brain, lungs and other organs.

Professor Charlotte Proby, a Cancer Research UK dermatologist based at the University of Dundee, said: "Using blood tests to assess the landscape of our DNA is a simple way to learn more about what's going on under the skin. The switching on and off of certain genes seems to affect when, where and why the melanoma spreads.

"Our goal is to develop a panel of similar biomarkers that will help us to accurately detect those patients needing extra treatment to fight their melanoma.

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

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Swanee's picture
Replies 32
Last reply 1/13/2014 - 11:28am

Please join me in an old fashion bell ringing for our friend Denise, who lost her battle with melanoma cancer on January 6th.  

I joined this site 4 years ago and experienced this bell ringing whenever a member whom everyone knew, lost their battle with melanoma.  I don't know where, when or who started it, and I would love to know.  For all who regularly read and post, I think it's a nice way to honor our Friend and send her to the heavens with our bells of solidarity and our quest to keep fighting and find a cure to melanoma cancer..

So in honor of our Friend, Denise Kirley, please ring your bell in honor of her memory.

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mark1101's picture
Replies 11
Last reply 1/16/2014 - 6:34pm
Replies by: Bubbles, mark1101, POW, Mat

Small met located on my right posterior iliac about 6 weeks ago brought me up to Stage 4 after participating in the ipilimumab trial earlier this year.  Will be determining next steps in a week or so after PET scan results are available.  My onc at Seidman indicates that if it is smaller or same as originally spotted, remove with radiotactical surgery.  If gone, wait and watch.  If larger or additional mets noted, systemic treatment is needed.  I just learned that I am BRAF positive and am wondering what systemic treatments this might open the door to.

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Good morning,

The FDA just approved the first-ever combination therapy for advanced melanoma! The combination involves a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib. Both drugs (developed by GSK) were approved by the FDA in May 2013 for use as single therapies. The MRF issued a statement on the approval, which you can read here.

Lauren - MRF

 

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Pink's picture
Replies 4
Last reply 1/9/2014 - 9:10pm
Replies by: Pink, Bubbles, UrsulaZ, POW

Went to Moffitt yesterday met the neuro and radiologist new MRI shows 4small lesions all on the right side.of my brain   I got fitted for the lovely plastic mask and start treatment on ties, we'd, Thursday and Friday. The following week start Ipi, here is hoping they all work. The trek of 1 45 min each way is tiring but I feel I am getting the best care there.

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