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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aussiewoman's picture
Replies 11
Last reply 6/24/2014 - 3:59pm

Hello. Have you faced this problem? I have stage IV, just diagnosed with 2 lung tumours - a 16mm on a lung lymph node and an 8mm lower in the lung lobe.

They're both theoretically resectable.

Here's the question - do I cut them out ( I LOVE cutting cancer out, it's my #1 favourite thing to do to it!) or embark on the Yervoy path and hope I'm one of the 30% who's tumours slow?

What if I have surgery and more tumours arise elsewhere? Aside from the primary site (conjunctiva) recurring like a mad thing, I also had two tumours in a paraspinal muscle - removed last month.

Ideas? Decision paths? Have you faced the same thing and how did you decide what to do?

Thanks X 1000.

 

 

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Anonymous's picture
Anonymous
Replies 0
Socks's picture
Replies 3
Last reply 6/16/2014 - 12:36pm
Replies by: Socks, arthurjedi007, RJoeyB

Any good recommendations for where to find the UV index for the day? The weather app on my phone (Living Earth) said 11 at the same time that AccuWeather.com said 5 and Weather.com said 9. I try to stay indoors between 10 AM and 4 PM anyway and I have SPF 50 Broad Spectrum sunscreen, face lotion, and lip balm as well as a UPF 50+ wide-brimmed hat but when the UV Index hits 11 or higher, I generally just stay inside, period, to stay on the safe side.

So where do y'all get your UV index info from? Or am I worrying about it for nothing?

"Be who you are and be that well." - Saint Frances de Sales

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CHD's picture
Replies 13
Last reply 6/17/2014 - 5:30pm
Replies by: Colleen66, Janner, CHD, Anonymous

Hi!  New here.  Have been following this site for awhile and I need help.  I have been dealing with vulvar melanoma, and what I'm wondering is if anyone here could explain the difference between satellite, in-transit and new primary melanoma in terms of local regional recurrence?  How are they different?  Do any, or all of them, mean that you have had a local recurrence/metastasis of melanoma?  Does this affect your overall prognosis for the worst?

I had a right radical vulvectomy last May.  Then in October a left-side vulvectomy to try to even things out, I was so uncomfortable, but during that surgery melanoma in situ was found.  The problem was, it wasn't evident on my skin and totally unexpected so the specimen sent to pathology wasn't oriented, and we didn't know where it had been, just that it was there somewhere and went all the way out to the margins.  I have had vulvar biopsies and just had a third hemivulvectomy trying to find the MIS, which also failed to locate it. :(

But what I'm wondering is, the original melanoma was on the right, removed by surgery with clear, 2 cm margins all the way around.  The MIS was found 5 months later on the left, totally separated from the one that had been on the right.  So would that be considered an in-transit melanoma, a satellite lesion, or a new primary developing?

I know I should probably wait until I see my oncologist in July to ask this, but it is driving me crazy, wondering if I have had a local regional recurrence and if that changes my prognosis to worse than it already was.

Any thoughts would be appreciated!

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Colleen66's picture
Replies 13
Last reply 6/17/2014 - 11:48am

Hi Warriors.

I'm stage 3b and 1 1/2 years out from surgeries and 1 month of HD Intferon.  I am currently stable with only 2 small, mets in my lung ( they have been stable since a year ago April).

I am developing Vitiligo on my hands and wrists.  I noticed some small pigment changes some months ago but nothing I would have connected it to Vitiligo.  It has spread since then and is now obvious what is going on.  Even though my skin is already very pale it is still quite noticible.  I will be making an appointment with my Derm on Monday or possibly just go straight to Oncologist????

This is what I have read so far about the connected between the two conditions.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861199/

Anyone have this happen or any thoughts or advice for me?

Thanks,

Colleen

Live!

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Camila Navarro's picture
Replies 12
Last reply 6/24/2014 - 11:38pm
 

Hi everyone, I'm Vania's daughter. We're from Brazil, so, I'm really sorry for my bad english.

My mom had a mole in the right leg since ever, and noticed that it changed a little, it got a little bigger and darker. So she went to the dermatologist, that looked and said that it should be taked off, for a biopsy. The biopsy took 3 weeks to be ready, and we got very nervous about it. So, when the result came, it showed that it was a stage IV melanoma. The doctor said that she should pass for a surgery that would take off more tissue from around the mole, and have a biopsy of de sentinela limph. The biopsy came positive, so the doctor recommended another surgery, to take the other limph...

She also had a petscan, that was clean, and I thank God for it!

We are waiting for the results of this surgery, and we're very nervous.

 

I'm researching a lot about this disease and I found this website, that It's like a blessing, cause I saw many people that had a stage IV melanoma and lived for a lot o years.

When I researched about the life expectation, I got in panic...

 

I hope I have good news about the next results...

 

Thank you for your atenttion.

 

Mother have a stage III melanoma

 

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Vicki88's picture
Replies 6
Last reply 6/16/2014 - 12:16am

My husband was recently diagnosed by a shaved biopsy from a spot on his nose.  He also has a streak under his fingernail that has not been addressed.

Upon the diagnose of melanoma, he was referred to a dermatologist specializing is Moh's surgery who is recommending removal with plastic surgery repair the following day.

My question is that, with no full body exam done by either dermatologist, is the normal proticol?

Also, since we failed to point out the streak under his fingernail, is there possibly more going on and if so, is seeing a specialist with Moh's surgery enough to address a more systemic possiblity?  He did do a physical exam by feeling each of his lymph nodes.  Is this enough?

I read that some melanoma's, if caught early and by their location, were less likely to spread.  Only, I do not know where these types of melanoma's are, nor what types of tests are needed to determine if they have or have not spread.

It is just over an hour to see these doctor's and would be the same amount of time to go on to MD Anderson. 

Should we go on to MD Anderson to have the whole body addressed?

Thank you for answering...Vicki88

 

Vicki88

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ecc26's picture
Replies 9
Last reply 6/21/2014 - 7:43am

Hello there,

I just started the Merk PD-1 EAP this week (first dose this past Wednesday). I'm hoping to hear from some of the others out there that have done PD-1 either as a trial or as part of the EAP's. Specifically from those who recieved the lower doses (similar to what is being given in the EAPs). I'd like to know, for those of you who got a positive response, how quickly did you notice positive changes? I've got some tumors that were growing rather quickly after having discontinued the BRAF/MEK combo in preparation for PD-1. They've become quite uncomfortable and I have to take pain killers at regular intervals. My concern is that if I don't get a relatively quick response these and other tumors will be a serious problem as there's one next to my aorta, one in a vertebrae, another one that's perispinal, etc. By "response" I'd certainly take a slowing or stabilization, I'm just wondering how early people noticed anything once they started.

Thanks everyone

-Eva

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Gene_S's picture
Replies 1
Last reply 6/16/2014 - 8:37pm
Replies by: DZnDef

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/15/2014 - 10:42pm
Replies by: Anonymous, Janner, kathycmc, SABKLYN, Julie in SoCal, Teochasse

I took my little girl to the derm for a rash, and had the doctor look at a small mole on my shoulder.   He told me he is certain it is melanoma.  I had no other spots or crazy moles. I've never had anything before.  He asked me where I want "treatment". I don't even know what treatment consists of.  He initially told me he would call in a week with results. After the biopsy, he said why don't we just schedule an appointment to discuss the results.  I looked at him and said "melanoma like I have cancer?!" He seemed certain after doing the biopsy I did.  

Can they see this just from the biopsy?  

 

I was in year at this point, and looked at the nurse.  I said "I can't believe this just happened, I'm getting married in a month". I said this thinking I can't be diagnosed with cancer now, I've got a lot of fun and exciting things to plan for. Dress fittings, and picking out the cowboy boots for the flower girls.  Her respond was "oh you are worried about the stitches and incision?"- I looked at her with my jaw dropped, and said "I don't know what you mean"- she said oh and said I'll ask the doctor if surgery can wait until after the wedding. She came back in and said "the doctor said we will discuss that next week".  

The things they said give me no hope it's "nothing". My fiancée and I are getting married in a month and have 5 little ones between us. This can't be my "story"?! God has blessed us beyond words, and I feel like next week I'm going to hear it's all about to be taken away.  

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mclaus23's picture
Replies 6
Last reply 6/19/2014 - 9:35pm
Replies by: brittanyx, Rod, Marianne quinn, Anonymous, Linny, Socks

What treatments are you all doing for stage 3 ? I've had a friend that was recently diagnosed . Any advice would be great :))

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amuah29's picture
Replies 3
Last reply 6/14/2014 - 11:42pm

Does anyone have any information on the joint pain side effects from the Yervoy trials? Thank you.

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Anonymous's picture
Anonymous
Replies 0
Anonymous's picture
Anonymous
Replies 0

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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