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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Damien Fairbanks's picture
Replies 9
Last reply 6/11/2011 - 4:17am

I dont know whether anyone will remember my sister Simone Fairbanks, she wrote on this board occasionally, Simone passed away on the 23rd May after a very brave fight.She was 35.

Simone was using the trial drug;Plx. It was working extremely well for 4 months with  a 70% reduction of tumors until the cancer came back suddenly. Simone was courageous until the cancer had taken contol. As a brother this journey with Simone has been horrible but also beautiful as i got to know my sister better then i have ever known her. Our whole family was with Simone when she died.We are so sad but we know now that the pain and suffering is over for her.I just thought that she would want me to leave this message to let everyone know that your support with replies really helped her knowing that it wasnt just her fighting this terrible disease. We will never forget Simone..

 

Damien Fairbanks.Loving brother and carer

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Joan C's picture
Replies 18
Last reply 6/10/2011 - 10:13pm

This has probably been posted before, but I just saw it.  A very very good video warning teens of melanoma, check it out:

 

http://www.thatvideosite.com/video/dear_16yearold_me

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TracyLee's picture
Replies 2
Last reply 6/10/2011 - 9:33pm
Replies by: Vermont_Donna, nicoli

Hi y'all,

Second Ipi dose on Thursday.

Wondering from those who've already done the entire 4 doses of Ipi, IF you had side effects....when did they begin? I understand we are all individuals, may react differently, etc etc. I'm just trying to figure out if I should take off Friday, or was it a slow/gradual with symptoms, or did they begin very suddenly?

Time to posse up! :)

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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NYKaren's picture
Replies 6
Last reply 6/10/2011 - 7:15pm

Hi everyone,

As I've mentioned, I'm on Yervoy, 2nd infusion scheduled for June 16th.  Starting last Friday, I started having diarrhea, but it was usually controlled with Imodium, and I thought it was too early for side effects.

On Wednesday, it was really bad, so I called Dr. Wolchuk.  He immediately put me on Entocort EC, a steroid that works in the gut.  Immediately after taking it, I felt better.  I called Dr. W. to report in today, and he said to stay on it and report back Monday.  I still have a small amount of discomfort in the abdominal area, but that's about it.  He also said that if I have to remain on the Entocort, I can still have my next infusion.  WHEW, I was really worried about that.

Apparently, diarrhea is one side effect that can start early and one that they need to monitor closely.  (I guess they have to monitor them all closely.)

Just thought I'd share my experience in case it helps someone else.

Take care,

Karen

Don't Stop Believing

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guyrossi's picture
Replies 1
Last reply 6/10/2011 - 5:48pm
Replies by: Sherron

Yesterday I found out that the mole on my back was a malignant melanoma.  I knew nothing about this disease until I spent the last 5 hours reading and researching.  Based on the pathology report the doctor told me that it is very unlikely that the cancer has spread.  However,  he wants me to come back on July 11th to take some more flesh from the orginal site of the mole. 

Does this sound like the prudent thing to do? Or should more be done?  I did mention to him that I have been achey and tired and have notices some soreness under my arms and inside my legs.  After what I have read today it sound like this could be more serious. 

Any feedback would be appreciated.

"I can do all things through Christ who Strengthens me."

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Rocco's picture
Replies 11
Last reply 6/10/2011 - 1:55pm

Scan results yesterday.  CT of chest/adb/pelvis and brain MRI both clean!  Scanxiety was pretty bad this time around, so greatly appreciated everyone's kind thoughts, good vibes and prayers.   Will be scanned again late August. 

Was told in order to stay on the Compassionate Use Trial protocol (10MG/KG) that I would need to stay on the 3 month scan schedule.  So in case I had reoccurance I would get the10MG instead of the 3MG dose.  Need to confirm with my Onc on this, as I saw a newbie (to me) Dr. yesterday.... need to weigh pros and cons of this approach.

Also asked to resign my trial paperwork as they added 2 more "rare" potential side effects for ipi/Yervoy - since I last resigned in March!   Reviewing now and will post what those new side effects are under separate posting in case folks are interested. 

Rocco - IV since  2005, THX2MDX / Ipi

Luke 1:37

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Sherron's picture
Replies 12
Last reply 6/10/2011 - 1:26pm

My computer is down at home, so cannot get into facebook....Just worrying about Eric & Jill.

Take Care,

Sherron, wife to Jim FOREVER

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Has anyone had weight loss as an only symptom before a recurrence.

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Terra's picture
Replies 9
Last reply 6/10/2011 - 11:22am

Hi, Derek and I are at the hospital getting his blood, ECG, etc completed for the extended use ipi trial in Toronto at PMH.  He has his first injection on Friday. 

We talked with the nurse today and she confirmed that once he starts ipi he will NOT be rescanned until he is competely finished with the 4 treatments. 

That is 3 months away, I am really concerned about this - it seems to me many of you have had scans before the trt is finished and some people have even been taken off the trial because of new mets developing during treatment.  Any comments.

 

Thank-you 

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Jamietk's picture
Replies 1
Last reply 6/10/2011 - 1:30am
Replies by: FormerCaregiver

Anyone have experience with abdominal fluid, both in regards to melanoma and not in regards to melanoma? Yesterday I had a fever of 102.4. I ached all day, but mostly abdominal pain. By the time I went to bed, I was in more pain than I had ever been in my life. I went to the ER and morphine didn't help much. They did a CT and it revealed pelvic fluid but no masses. They checked for pelvic infection and bladder infection, both were normal. All other standard bloodwork they did was normal. So they sent me home with some pain meds and said to follow-up with my Dr. I know it all sounds gynecological in nature, and I did have a fever with it. But knowing my bloodwork was fine and the infections they tested for were negative, my mind starts to wander. I have a call into my Gyn and I have an email into my PA at MDA. I guess I'm wondering if anyone's melanoma first progressed in the form of having fluid on the pelvis?

Thanks

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bcl's picture
Replies 3
Last reply 6/10/2011 - 12:25am
Replies by: bcl, Ranisa, NicOz

MSN picked it up so it should get a lot of views. The Holick quote on VitD is particularly helpful "I don't really see a need to tan. Supplements work just as well."
 

 

 

http://www.msnbc.msn.com/id/43302984/ns/health-skin_and_beauty/

 

Some docs still 'prescribe' tanning, despite risksPatients sent to tanning beds for various ailments, including depression or even tooth whitening. How to protect yourself from misinformation
 
 
 Tanning bed

Donald Miralle  /  Getty Images file

Despite the known dangers of UV exposure, thousands of patients are sent to tan by their doctors.
By Roxanne Patel Shepelavy
Self
updated 6/9/2011 8:38:42 AM ET 2011-06-09T12:38:42

Five minutes in a bikini with her eyes closed, relaxing in the heat of a tanning bed, and Delta Payet felt her winter blues easing away. It was just as her doctor had promised.

A high school junior in frigid Vermont, Payet had been tired and unhappy for weeks when her family doctor gave her a diagnosis of seasonal affective disorder, a fall and wintertime melancholy brought on by changes in ambient light, body temperature and hormone regulation. He told her to get some sun. "But it's not like I could take a long vacation," Payet recalls. "He said that going to a tanning bed would do the trick."

She went three times a week from February right through the summer. For about the next three years, she'd pop in now and then. She didn't realize there could be long-term effects: "I loved being tan, and I thought I looked and felt healthy."

Story: New drugs help melanoma patients live longer

Payet, now 40, stopped going to tanning beds in her early 20s, after a dermatologist found a keratosis (an abnormal skin growth) on her right breast. She says he told her it wasn't immediately dangerous but probably had come from tanning too much. During the next 10 years, she became an aesthetician and eventually opened a skin caresalon in Paradise Valley, Arizona; she didn't even think about her time in the tanning bed. But in 2001, Payet got a reminder of the worst kind, this time on her upper arm: a precancerous mole—a harbinger of melanoma, the most serious form of skin cancer.

Her doctor removed it, leaving behind a 1-inch-by-1-inch scar. In subsequent visits, he removed three other precancerous moles and several more that looked suspicious. She says that because she had no family history of skin cancer, the doctor thought it was odd for her to have so many worrisome moles — unless she'd tanned a lot when she was younger.

 

"I couldn't believe it," Payet says. "I tell other people how to take care of their skin. And I'm the one who went to a salon and came out with precancerous spots."

Story: Holy moley! Is that a suspicious skin spot?

Today Payet knows the harsh truth: Tanning is not a proven treatment for SAD — but it is a proven carcinogen. In fact, people who lie in a tanning bed increase their melanoma risk by 74 percent, a study from the University of Minnesota in Twin Cities reports. When she catches a glimpse of her scar, Payet can't help but wonder: Did following her doctor's advice, well-meaning as it was, make her susceptible to cancer?

Doctors still prescribe tanning

Payet got her prescription to tan almost 25 years ago. This wouldn't happen now, right? Astonishingly, it does. Forty-six percent of indoor tanners say they've done it for noncosmetic reasons, 11 percent on the advice of their doctor, according to a survey of 6,881 people who went to tanning salons, done by the International Smart Tan Network, a tanning-salon training group in Jackson, Michigan. Those results suggest that thousands of people hit the beds on their doctor's recommendation. The survey showed that providers prescribed tanning for depression, vitamin D deficiency, fibromyalgia, muscle aches, skin disorders and even tooth whitening. "Whenever I would have cramps, my OB/GYN advised me to [lie] in the tanning bed to ease the pain," one respondent wrote.

What are these doctors thinking, recommending a known carcinogen as a treatment for sundry ailments? The dangers of too much UV exposure are well-known by now. UV radiation accounts for about 65 percent of melanomas, according to the Skin Cancer Foundation. And women younger than 39 are almost twice as likely to develop melanoma as are men the same age.

Meanwhile, there are no proven medical benefits to getting a tan. None. Dermatologists might treat some cases of psoriasis with in-office UVB light boxes, but anecdotal evidence that salon tanning helps relieve skin problems and aches or speeds up the recovery from a coldis exactly that—anecdotal, with zero clinical research to back it up. "It's absolutely ludicrous to send patients to tanning salons for any medical reason," says Bruce Brod, M.D., clinical associate professor of dermatology at the University of Pennsylvania School of Medicine. "Indoor tanning doesn't have health benefits. It causes skin cancer!"

Officially, the tanning industry is not allowed to say that its services are good for you. In 2010, the Federal Trade Commission ordered the Indoor Tanning Association, which represents the indoor tanning industry, to stop "making false health and safety claims." Yet a group like the International Smart Tan Network can trumpet the results from its survey, which found that those prescriptions for tanning come from family physicians and dermatologists, as well as nurses, psychologists, physical therapists and acupuncturists.

Some of the doctors named by respondents told Self that they would not send a patient to a tanning salon. But the results suggest that patients, at a minimum, are getting mixed signals about tanning from health professionals, who themselves may be getting ambiguous information. Doctors know that indoor tanning causes skin damage but also that their patients say it makes them feel less depressed. "If someone says they feel better, a doctor might say, 'Why not [let them tan]?' But that's not science," says Alfred Lewy, M.D., a psychiatry professor specializing in light disorders such as SAD at Oregon Health & Science University. He notes that a proven treatment for SAD is staring into a tabletop fluorescent light box, which doesn't emit UV light.

'Tan in moderation'
Grace A. Gibbs, D.O., an OB/GYN surgeon in Lansing, Michigan, recommends tanning to, on average, 15 to 20 patients per week for various medical reasons, such as vitamin D deficiency, osteoporosis and SAD. "I'm not worried about them getting skin cancer," she says, adding that she gives every patient an annual skin check. "I'm more worried about them breaking a bone [due to osteoporosis] or attempting suicide because of depression. And I tell them to tan in moderation."

Of course, not everything in moderation is fine. No doctor would design a regimen of occasional or moderate cigarette smoking for anxiety, even if it seemed to work. And tanning beds are in the highest category for cancer risk, alongside smoking tobacco, according to the International Agency for Research on Cancer.

Although there is some variation among salons, tanning beds typically emit 95 percent UVA light and 5 percent UVB light, about the same as the noontime sun. UVA rays have longer wavelengths of light that stimulate the production of melanin in the outer layer of the skin (a response to damage that rays are causing). Studies have shown that UVA rays — not UVB, the burning rays — are the major culprit in melanoma because of their penetration into skin cells. And continued UV exposure of any kind causes cell mutations that can lead to skin cancer.

Jami Gorneault wishes she could take back her time spent in tanning beds. She went to salons for about 10 years, starting when she was a high school freshman who had been asked to the senior prom. "I wanted a glow like the other girls," says Gorneault, 30, a Colorado native who now lives in Springfield, Massachusetts.

Gorneault would visit salons to maintain her summer tan and before special occasions, usually every few months, with regular visits for a month at a time. "I didn't think it would affect me, as long as I stopped before I got into my 30s," she says. "And anyway, I thought getting skin cancer wasn't a big deal."

She continued to think that until, at 24, she was diagnosed with stage I melanoma after finding a brown and black mole with irregular edges in the middle of her back. Her doctor scooped it out, leaving a 5-inch-long scar. "I had a local anesthetic, but I could hear the cutting of my skin," Gorneault recalls.

Four years later, she felt a lump under her left arm. Some remaining cancer cells —undetectable in skin checks — had spread beneath her skin. She now had stage III melanoma.

After surgery to remove 11 lymph nodes from under her arm, Gorneault began immunotherapy, a grueling course of intravenous alpha-interferon designed to kick-start her immune system. As the treatments went on, the side effects worsened. Gorneault felt exhausted, achy and fuzzy-headed, as if she had a months-long flu. She started to lose her hair. And she was depressed — barely able to get herself out of bed.

Long-term consequences
Slowly, Gorneault became stronger, and two years later, she is cancer-free. But she lives with the knowledge that cancer could return at any time. Her doctors have also told her it's possible that the interferon has compromised her fertility. "To know that something I've dreamed of my whole life [having kids] might be taken away was harder than the illness itself," Gorneault says. "If I'd known going to the tanning beds would affect me at such a young age, I absolutely would not have done it."

Initially, Gorneault thought tanning had benefits. She took note of posters in the salon touting tanning as a healthy way to get vitamin D. "It helped me justify going there," she says. She couldn't know the message was part of a well-funded effort to convince patients — and doctors—that tanning is therapeutic.

Take the UV Foundation, funded in part by tanning-bed bulb makers, distributors and the Indoor Tanning Association. The foundation has channeled money into more than a dozen studies by Michael F. Holick, M.D., a professor of medicine at Boston University, whose research promotes the idea that sunlight decreases risk for chronic diseases. The UV Foundation also supports SUNARC, a pro-vitamin D nonprofit led by physicist William Grant, Ph.D. Grant is a board member of The Vitamin D Council, a group that argues "humans are needlessly suffering and dying from vitamin D deficiency." Meanwhile, the tanning industry uses any research that shows the benefits of vitamin D to justify its claims that tanning is beneficial.

Late last year, the Institute of Medicine, an independent nonprofit that strives to find consensus on health advice, released a report that reviewed more than 1,000 vitamin D and calcium studies and determined that most of the new findings were not well proven or were too new to be conclusive except for the large amount of evidence that D is good for bones. But even if more D does turn out to equate to better health, indoor tanning is not the best way to get it. It's exposure to UVB rays—not the primarily UVA light that comes from a tanning bed—that triggers the production of D (by converting 7-dehydrocholesterol in skin to vitamin D). "Sending a patient to a tanning salon for vitamin D is the definition of insanity," Dr. Brod says. Even Dr. Holick, despite his industry support, told self, "I don't really see a need to tan. Supplements work just as well."

These days, Gorneault is a nanny, waiting to hit the five-year survival mark to decide if she's healthy enough to have a baby of her own—one she'll live long enough to see grow up. She tells everyone she can how tanning imperiled her dream of starting a family. To her, it's an insult that doctors would send patients to a tanning bed. "I'm appalled," Gorneault says. "Maybe if doctors heard what I went through, they would never tell a patient to tan. Tanning beds cause cancer. How does it make any sense?"

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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KatyWI's picture
Replies 1
Last reply 6/9/2011 - 9:29pm
Replies by: bcl

There is an excellent article on indoor tanning on msnbc.com today.  I think it is sourced from Self magazine.  It addresses a scary issue - some doctors are recommending patients tan for various health benefits, which the article explains are unfounded.  It is definitely an "unbalanced" article - delightfully so - becuase it breaks down the arguments of the tanning industry and lays out the fallacies.  A few choice quotes:

"Indoor tanning doesn't have health benefits. It causes skin cancer!"

"Sending a patient to a tanning salon for vitamin D is the definition of insanity," Dr. Brod says.

Check it out:  http://www.msnbc.msn.com/id/43302984/ns/health-skin_and_beauty/

 

KatyWI

Just keep going!

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Gene_S's picture
Replies 2
Last reply 6/9/2011 - 2:48pm
Replies by: EmilyandMike, KellieSue

Dominating the 2011 ASCO meeting were the plenary reports on trials with two novel therapies for metastatic malignant melanoma.

see:  http://www.oncologystat.com/news/First_Line_Market_for_Melanoma_Not_a_Lock_for_Bristol_or_Roche.html

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Pass this onto anyone who is interested: http://www.safefromthesun.org/about/innovative_research.html 

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