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.

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Jun 13, 2014 07:41 AM EDT

Americans Who Survive Cancer Face Significant Economic Burden

By Benita Matilda

 

Most cancer survivors in the United States experience a significant economic burden, according to a new federal report.

A study by the Centers for Disease Control and Prevention highlights that soaring medical costs, health insurance access and reduced productivity at work have a drastic impact due to which cancer survivors face a heavy financial burden.

 "Cancer survivors face physical, emotional, psychosocial, employment and financial challenges as a result of their cancer diagnosis and treatment," said Donatus U. Ekwueme, PhD, a senior health economist at CDC's Division of Cancer Prevention and Control. "With the number of cancer survivors expected to increase by more than 30 percent in the next decade - to 18 million Americans -- medical and public health professionals must be diligent in their efforts to help reduce the burden of cancer on survivors and their families."

For this study, to estimate the annual medical costs and productivity losses among cancer survivors (18 years and older) and those without a cancer diagnosis, researchers analyzed data from the Agency for Healthcare Research and Quality's 2008-2011 Medical Expenditure Panel Survey. The researchers estimated reduced productivity by analyzing employment disability, health related missed work and the number of days spent in bed due to ill health.

The annual medical costs of male cancer survivors from 2008-2011 was more than $8,000 per person and productivity was less than $3,700 compared to males without a history of cancer. Among females the medical cost per person was $8,400 and productivity loss was $4,000.

Females were more likely to survive cancer. Among cancer survivors, employment disability accounted for 75 percent of lost productivity. Nearly 10 percent of survivors of age 65 and younger were uninsured.

The authors noted, "Nearly 32 percent of survivors experienced limitations in their usual daily activities outside of work because of cancer. Among those employed, more than 42 percent had to make changes to their work hours and duties. Comprehensive health and employment intervention programs may be needed to improve outcomes for cancer survivors and their families."

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5dives's picture
Replies 12
Last reply 6/13/2014 - 11:45pm
Replies by: 5dives, Anonymous, RJoeyB, JoshF, Janner, Tim--MRF, mary1233

Hello all, 

I am writing with what may seem a very basic question. I recently received "the call" from my derm that I have a superficial spreading melanoma, .96 mm, Clark's level 4, mitosis rate 2, brisk TIL. At first glance, I see that this will probably be 1b, right? 

Derm says .96 is close enough to 1 mm to warrant the SNB, and he referred me to the cancer center at Loyola Medical Center. Surgeon = Godellas, doctor = Joseph Clark. 

I see that Dr. Clark is heading several clinical trials, and my derm said he "lives and breathes" melanoma. He said that if he had a loved one with melanoma, he'd send them to Dr. Clark.

My question: I see this term "major cancer center" thrown around on this board, and I have to admit...I don't know what it means. I know many feel melanoma is too serious to be treated anywhere but at a major center, and I live in Chicago, so there's probably a "better" choice here...but I wouldn't even begin to know where the nearest "major cancer center" to me is.

My cousin died of melanoma, and I'm 45 with three boys...I do NOT plan to mess around with this disease. Bull by the horns, and all that.

Any thoughts appreciated.

Best, 

Elaine

http://melanomadame.blogspot.com/

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robbier's picture
Replies 7
Last reply 6/12/2014 - 5:51pm

Hello everyone, I was first diagnosied in August of 2011 and was in remission until the scans found hot spots  March of 2014.  After two biospys and a trip to Md Anderson.  I am most stressed than usual.  At MD Anderson the doctor order a CT scan, which he showed us (myself and my sister).  According to that scan there was a small mass near my urethea, a suspucious lymph node, and spot near my liver.  He thought that spot near my liver was just a blood vessel.  He told me I needed another biospy and I could chooose to do that out at MD Anderson or at home.  He also told me that any treatment I considered could be done at Md Anderon or  home.  My thoughts was at that time, well if they can do this at home, I will go home and have it done.  I was so wrong.  Come to find out, that mass my cancer doctor thought was just my uretha just constricted, and that lymph node is near some bile duct and hard to get to.  I saw my surgeon yesterday and he is getting with a expert in that to see how to remove that node at this time.  My surgeon recemmended I go back to MD anderson.  At this point in time I feel like nobody cares about me, and this unrest of the going back and forth and not knowing what to do for me us unreal.

 

Plus every time I have been on  this site, it like nobody out there cares about what I am  going through or the fact that I feel like a ping pong ball going back and forth.  My Doctor here in Alabama basically told me, that we do not have the medical expertise that knows how to watch someone that is doing teatments.  Then Md Andseron didn't seem to care about me.  Really?  This is my life we are talking about.  I am now considered to be in Stage 4, M 1 B, because that cancer spread to my lung.  I need information fast so I can make a decison on what to do and where to go.  Need Help fast.

Robbie

I have not had any treatment, and do have the BRAF gene 6000E.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Acral melanoma tumors may require more aggressive surgical treatment

 

Gunmaste PV. J Clin Oncol. 32:5s, 2014. (suppl; abstr 9052).

 

June 11, 2014

 

 

Acral melanoma was found to have higher recurrence and lower survival rates than other types of melanoma and may require more aggressive surgical intervention, according to researchers.

 

    

The researchers selected patients from a prospectively enrolled cohort of primary melanoma patients at NYU Langone Medical Center; 61 patients with acral melanoma and 183 patients with non-acral melanoma were included. Median follow-up was 33 months in the acral melanoma cohort and 58 months in the non-acral melanoma cohort.

 

Compared with non-acral melanoma, the acral histologic subtype was found to be an independent negative predictor of recurrence-free survival (P < .001) and melanoma-specific survival (P = .001), according to the researchers.

 

Recurrence rates were significantly higher in patients with acral melanoma (49%) compared with patients who had non-acral melanoma (30%; P = .007).

 

The researchers also found that in tumors with a thickness of less than 2 mm, there was a significantly higher recurrence rate of acral melanoma at 28% compared with non-acral melanoma at 10% (P = .048). Additionally, the rate of loco-regional recurrence was nearly double among patients with acral melanoma (39%) compared with patients who had non-acral melanoma (19%; P = .001).

 

Disclosure: The study was supported by the Perlmutter NYU Cancer Institute NCI Cancer Center Support Grant (5 P30 CA 016087-2), and the Marc Jacobs Campaign to support melanoma research. Stein received support by the Irwin I. Lubowe Fellowship in Dermatology.

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DZnDef's picture
Replies 16
Last reply 6/12/2014 - 8:59pm
Replies by: DZnDef, Swanee, joelcairo, Sherron, Anonymous

Hi all,

I just had my follow up CT scan on June 9th with Dr. Steven O'Day at the Beverly Hills Cancer Center.  My previous  scan was February 7th.  I had met with Dr. O'Day a couple of months prior and had asked him if he thought I had time (given the status of my cancer) to first address my overall health before beginning treatment.  He thought that would be ok (though its not a request he hears often) as I had two small tumors in my lung (13mm and 9 mm) and no where else.  I am also BRAF V600E so if the tumors got out of control, he was confident he could shrink them with a BRAF inhibitor before putting me on Yervoy.  He also referred me to a Naturopath that he has worked closely with in the past.

I quit my job (too stressful and thankfully, we can live on one income), radically changed my diet and began supplementing (under my Naturopath's advice).  I had just over one month of that under my belt before the June 9th scans.

The full body CT scan showed no new tumors anywhere.  Other random pre-existing spots were unchanged (unknown if those are melanoma or not - likely not per the radiologist).  The two known melanomas in the lung each grew by 1 mm over the 4 month interval.

Dr. O'Day suggested that I keep doing what I'm doing if I'm comfortable with that and to scan again in 3 or 4 months.

I confess that I'm curious to see if I can favorably impact this disease using natural methods.  I'm willing to be my own guinea pig for this experiment as I feel comfortable that Dr. O'Day has my back if I fail and the melanoma decides to go wild.  I feel very fortunate to have an understanding doctor and the personal freedom to pursue my own health full time.  I was hoping for better news than I got, but it could have been a lot worse and I do have more things I'd like to try before resorting to chemicals if I have time.  Plus, I feel better than I have in years.  So, keeping my fingers crossed that it stays under control.

I hope you are all doing well,

Maggie

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Ginger8888's picture
Replies 11
Last reply 6/12/2014 - 8:39pm

Hi everybody, i'm starting Yervoy tomorrow for stage 111 C melanoma and was wondering if there anything i need to prepare for, for tomorrow besides something to read and stuff..Also was wondering how soon the side effects start? I'm really nervous and hope i can finish all the treatments and it works..I did the 30 high dose of interferon ( with only a little fatigue) about a months or so ago..Any help out there..??

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Julie in SoCal's picture
Replies 17
Last reply 6/12/2014 - 11:34am

Dear Friends,

Thank you so much for asking about my scan results.  Please celebrate with me! All is good!  My scan came back "perfect", no funk, no hot spots and nothing to watch and see!  It's all good.  In addition, Rock Star Doc thinks I'm a complete responder to Ipi!  The larger of my tumors is now pretty much down to nothing, and the  three smaller ones are now smaller than rice grain size.

We also talked about the lingering side effects from Ipi. Mostly this is a more active immune system, so I'm much more sensitive to everything, like bug bites, flu, bad food... But probably the most annoying of these is "arthritis like" symptoms in my hands, wrists and shoulders.  RS Doc said that this is from the IPI, and it should burn itself out in 6 months or so.  RS Doc said I could do a 5 day course of prednisone to take care of my hands and arms, but I'm not sure what is worse- 6 months of sore hands and arms or 5 days of steroids (they make me  crazy!!).  Don't get me wrong this is is no fun, but after hearing the "complete responder" news, I pretty much didn't care about my hands and would gladly power through stiff mornings with a hotter shower and ibuprofen for kicking Mel to the curb!

And to add good news to good news,  Rock Star Doc also said that I can be planning to go back to Asia!  So the plan is for me to get scans in 3 months and in 6 months, and anticipating that everything will be fine, return to Asia sometime in the new year.  Yea 2015!!

Some of the other things I learned from RS Doc: If you're an Ipi responder, you're probably not going to have a recurrence, but if you do, it's in the first two years. And if you're an ipi responder and get past 2 years with out a recurrence, he said he's never seen someone recur.  Essentially you're cured (ok he didn't use the "cured" word").  Life is good!

Thank you friends for your wisdom and support and standing beside me in this!!

Julie

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/11/2014 - 9:12am
Replies by: Bubbles

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/13/2014 - 8:09pm
Replies by: Anonymous, RJoeyB

Has anyone had cyber knife done on lung mets and a few lymph nodes. The disease load is low. We are out of other treatments.  Where would you go?

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melfighter's picture
Replies 4
Last reply 6/19/2014 - 12:02am

Hi, my husband started with stage 4 with tumors everywhere, liver, lungs, bones & brain (14 lesions), on the report, it says "innumerable" number of lesions throughout his body. He has been on Tafinlar/Mek combo for 16 weeks also WBR to his brain and radiation to his back due to severe lower back pain, due to L3 compression. First sets of scan after 12 weeks show a mixed bag. Tumors on soft tissues showed marked improvement with the bigger tumors shrinking and small ones disolving, but new lesions are showing up on the bone scans, so the combo has not worked on the bones. His brain also showed good results from the radiation.

Will the combo eventually work on the bone? I read from another post that it takes longer on the bone but the combo has shown to be effective on the bone?  The radiation on his lower back has resolved a lot of his pain but he now complains that his hip is in pain and that the pain moves around between his femur and hip?

 

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/11/2014 - 8:56pm
Replies by: Anonymous, Swanee, BrianP, hbecker

I feel like I created quite a stir with my questions in my original post- cured.  It was not my intent to offend anyone- but just to get perspective.  I apologize if I did not comment on your thought and it offended anyone.  Again- thanks for all who shared.  Everyone one this board had their own battle to fight- and I am thankful for a place like here to express my thoughts! :). 

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Kenny's picture
Replies 7
Last reply 6/12/2014 - 7:13pm
Replies by: Kenny, BrianP, Kim K, Bubbles, G-Samsa

This is my first post, I have read a lot on this forum recently and have been very thankful for the content.  

I found out on March 25, 2014 that I have melanoma.  What started out as a very small spot on my upper left back about the size of a pencil tip has turned into stage 3a melanoma.  It was also found in one lymph node under my arm.  I had a axillary lymph node dissection on April 25th and no melanoma was found.  I had the melanoma tested for the BRAF mutation and I do.  I have been looking into treatment and have this as an option.

Does anyone have any experience with this trial?  I have a meeting on Monday June 16th to go over the details.

Thank you,

Ken

 

GSK BRF115532

A phase III randomized double blind study of dabrafenib (GSK2118436) in COMBInation with trametinib (GSK1120212) versus two placebos in the ADjuvant treatment of high-risk BRAF V600 mutation-positive melanoma after

Key Eligibility:

  • Completely resected histologically confirmed high-risk Stage IIIa, IIIb or IIIc

  • Must be surgically rendered free of disease no more than 12 weeks before randomization

  • BRAF V600E/K mutation positive

  • No prior systemic anti-cancer treatment (chemotherapy, immunotherapy, biologic therapy,

    vaccine therapy, or investigational treatment) or radiotherapy for melanoma allowed. For more information: NCT01682083 

 

Ken Sears

Stage 3a 

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