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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AlanM's picture
Replies 4
Last reply 8/23/2011 - 7:13am
Replies by: Lisa13, AlanM

I started Yervoy last week and up until today had not really felt any side effects other than an occasional "knot" in my stomach. Today my ability to concentrate has fallen off considerably and I am feeling slghtly dizzy. Has anyone on Yervoy had similar side effects? This is making work a challenge today!

Alan

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Lauri England's picture
Replies 7
Last reply 8/23/2011 - 12:21am

I am currently about 9 1/2 months into my interferon treatments.  Last Monday I had a shot right before bed and Tuesday I was so grumpy I couldnt hardly stand myself. Im not talking about the normal grumpy day.  I mean aggressive and feeling like I was ready to explode.  Not like me at all.  This continued into Wednesday and Wednesday night my husband and I got into an argument and I missed my shot that night.  The aggression continued into Thursday and then Friday and I again did not do my shot Friday.  I can not stand the way I have been feeling emotionally.  And yes I am on prozac but sometimes it does not help.  Now it is Sunday and I have been off the shots for a week tomorrow and I am feeling so much better.  I am not sure if I will start my shots again or not.  I have not talked to my doctor because of insurance problems this month.  Should be all straightened out my September.  At this point I am not sure I want to start them again.  My doctor wants me to have scans in October.  That will be the first scans since last summer. I have felt like such crap for so long half the time I dont know if the interferon is working or if the melanoma has spread.  The day after a shot my legs would ache so bad I could not walk around a lot and I had little to no energy. I have pain killers but when I take them I just sleep so I dont take them much.  The leg pains are bearable just not much walking around. I have some decisions to make at this point and looking for advice.  Thank you for listening and God Bless!!

Don't sweat the small stuff. There are bigger fish to fry!

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AlanM's picture
Replies 8
Last reply 8/22/2011 - 10:39pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?

Alan

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Vermont_Donna's picture
Replies 18
Last reply 8/22/2011 - 10:12pm

Hi folks,

I am back to work as of 8/15 full time and feeling great. I just had a complete oncology checkup and dermatology visit also (just happened to be a week apart, usually I stagger each appt a bit further apart). Anyways, I had noticed a blue spot three weeks previous to my derm appt right below my knee on my right leg, where all the melanoma has been. It was removed in a punch biospy and was black below the skin line...I was quite dismayed as was my dermatologist as in this exact spot I have had two melanoma intransit mets removed several years ago and they looked just like this tissue sample. But on Monday, my first day of work, I got the following news. YOU ARE STILL A COMPLETE RESPONDER and here is the actual PATHOLOGY report....basically it was explained to me that my body's immune system is working to attack melanoma...thats the Ipi! I remain a complete responder!!

Vermont_Donna, stage 3a, NED

Pathology report:

A - There are numerous macrophages containing coarse melanin pigment
(melanophages) within the deep dermis and scar. These cells have the
histologic appearance of melanophages, strongly express CD68, and are
negative for MART-1. In this patient with known metastatic melanoma, the
findings are consistent with a regressed site of melanoma. Multiple
additional sections were examined and melanoma cells are not identified.
Prior biopsies SD09-26017 and SD10-14908 were correlated.
Interestingly, normal melanocytes are not identified in the epidermis on
MART-1 stain, and this result is duplicated on a repeat MART-1 stain. This
apparent absence of MART-1 staining normal melanocytes in the epidermis is
not understood. Possible explanations include regression of normal
melanocytes, a vitiligo-like response, and effect of prior radiation.

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ockelly's picture
Replies 23
Last reply 8/22/2011 - 6:04pm

Is anyone out there, besides Michelle in VA, in this clinical trial?  Wondering if you are having side effects after injections?  

Any indication if you are receiving the drug vs the placebo?  We should hear this week if my husband, TJ (stage 3b), qualifies.

Kelly

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bcl's picture
Replies 5
Last reply 8/22/2011 - 5:08pm
Replies by: bcl, Tim--MRF, MikeWI

I am fed up with our cultural obsession to be tan and most disappointed that the American Cancer Society is choosing to perpetuate the look. Yesterday on a paid TV commercial melanoma victims were repeatedly referred to as albinos. (I had to listen to this in person at the Victoria public teen tanning hearings.)  If this is the industry, and now cancer society messaging our children are to be exposed to, then Imo we need to address this psychological brainwashing before we have yet another generation of children obsessed with changing their skin colour, regardless of cost. 

http://www.latimes.com/health/la-he-fake-tanning-20110822,0,7372058.story

 

Sunless tanning safer but can have a dark side

By Lily Dayton, Special to the Los Angeles Times

August 22, 2011

A glowing suntan is still glorified in the U.S., despite decades of public education campaigns about the relationship between sun exposure and skin cancer. According to the American Cancer Society, rates of melanoma, the most lethal form of skin cancer, have continued to increase through the last 30 years. And though death rates from melanoma have recently decreased, largely due to earlier diagnoses, almost every hour one American dies of the disease.

In light of these statistics, it's no wonder that sunless tanning options — creams, aerosol sprays and pills — continue to flood the market, promising consumers who seek darker skin tones a golden glow without the harmful effects of UV radiation.

But is there really such thing as a "safe tan"?

The most popular options for sunless tanning are sprays and creams containing dihydroxyacetone (DHA), a Food and Drug Administration-approved color additive. DHA is a sugar compound that reacts with proteins in the outermost layer of dead skin cells to produce a brownish hue that lasts until the skin sloughs off.

Dr. James Beckett, a dermatologist at the Palo Alto Medical Foundation, says sunless tanning creams containing DHA appear to be a reasonable alternative for those who can't resist the appeal of a tan-looking skin. "They are much safer than sunbathing," he says. But though he's never seen patients with an allergic reaction to DHA itself, he believes it's possible for people to develop a reaction to the preservatives, perfumes and other ingredients in tanning products. Indeed, the FDA has received a few reports of allergic rashes from the items.

No studies have looked at health effects of regular, long-term use of sprays and creams containing DHA, but Dr. Martin A. Weinstock, professor of dermatology and epidemiology at Brown University, says there's no reason to expect any danger. "We do have a number of years of experience with people using [the products], so we have a fair amount of confidence that they're not harmful," he says.

But some of that confidence about safety disappears when a person walks into a spray-tan booth that provides a full-body blast of tanner, warns Dr. Jennifer M. Fu, a dermatologist at Solano Dermatology Associates. "We don't know if dihydroxyacetone is safe for use around the eyes, lips or other mucous membranes, or for inhalation, ingestion or absorption into the bloodstream. Appropriate safety studies just haven't been done," she says.

The FDA has received reports of coughing, dizziness and fainting from people who've used sunless tanning booths — but it's unclear whether these symptoms came about in reaction to sunless tanners or if they were related to preexisting medical conditions. A number of sunless-tanning-booth manufacturers have said that they plan to conduct studies demonstrating the safety of the process, but none has yet provided data to the FDA.

Sunless tanning facilities don't always make the experience as safe as it can be. Fu led a small 2004 study examining safety practices, which found that standards varied: All 17 of the facilities surveyed encouraged customers to close their eyes, 13 recommended that customers hold their breath, but only one offered safety equipment — disposable eyewear, petroleum jelly for the lips, and cotton balls for the nostrils.

Tempted by "tanning pills"? Beware. The pills work by tinting the skin with high doses of color additives, most often a naturally occurring pigment called canthaxanthin. Though canthaxanthin is FDA-approved for human consumption as a food coloring (often found in items such as ketchup and salad dressing), the dosage required to give an orange-brown hue to human skin is much higher than anything you'd get from eating.

In the early 1990s, a company submitted an application to the FDA for the approval of tanning pills containing canthaxanthin, but the application was withdrawn because of side effects that included yellow crystal deposits in the eyes, liver damage, nausea, cramping, diarrhea, severe itching and welts. Despite FDA regulations banning the sale of canthaxanthin as a tanning agent, these pills continue to be sold over the Internet and elsewhere.

There's another possible problem with all of these products: Beckett worries that they might encourage people to let down their guard against UV radiation. Unlike a real suntan, a tan from a bottle does not provide any long-term protection against harmful rays, and studies have found that many people who turn to sunless tanning are dangerously cavalier about UV exposure. They get a lot of sunburns, they aren't especially likely to use sunscreen or protective clothing when outdoors and they spend a lot of time in indoor tanning salons.

Vilma E. Cokkinides, strategic director in risk factor surveillance at the American Cancer Society, says that she would ultimately like to see sunless tanning substitute for UV tanning — but that's not what she's seen thus far. In a large population study of adolescents that was published in the Archives of Dermatology last year, she and her colleagues found that teens who practice sunless tanning were also more likely to use indoor tanning.

"People are using them interchangeably," she says. In other words, the products continue to promote tanning appeal but don't necessarily reduce indoor tanning use.

There's some room for optimism, though: A study published in the same issue of that journal found that people can embrace fake tanning and stay out of the sun if they get the right encouragement. Female beach-goers in the study received skin cancer education, were shown attractive pictures of women with sunless tans and free samples of sunless tanning product as well as sunscreen — plus a motivational follow-up 10 months later. Compared with a control group, they spent less time in the sun during the following year.

Weinstock, who coauthored the Archives of Dermatology study on adolescents and tanning, agrees that sunless tanning products do have potential to replace UV tanning — but that promoting them may also perpetuate the allure of the suntan.

"Part of the problem that got us into this skin cancer epidemic we've been experiencing is that there is glorification of the tan," he says. "People who have light skin want to have darker skin. That leads to increased skin cancer risk."

health@latimes.com

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See:  http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/1931826

Best wishes to all fighting this beast...  Gene and Judy

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

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CKasper's picture
Replies 4
Last reply 8/22/2011 - 12:37pm
Replies by: CKasper, LynnLuc, Janner

I met a woman the other day at the market and we got into an conversation about melanoma,

she said her brother was Stage 5.  Has there been a change in th staging system?

 

CKasper

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NicoleinVA's picture
Replies 5
Last reply 8/22/2011 - 12:13pm
Replies by: Janner, NicoleinVA, DonW, lhaley

I recently had WLE and SLNB; thankfully nodes were negative and margins are clear.  My surgery was preformed by surgical oncologist and plastic surgeon.

I am in the Hampton Roads area of Virginia (Newport News/Williamsburg) and my surgeon, Dr. Michael Peyer is the melanoma specialist in our area.  He recommends that I see him every 6 mos for 5 years as well as every 6 mos for skin checks with dermatologist.  This is the second time in 4 years this has melanoma has come back to the same spot and I'm concerned about reoccurrence, not in the same area as they took out alot of tissue, but in other areas of my body.

Any feedback of anything else I should do would be greatly appreciated.  I'm very diligent about sunscreen use now (I was not in the past), however at 44 years old this is a little late as I know I did alot of damage when I was younger.

As always, thanks for all your input.

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/22/2011 - 9:01am

Hello all - My first post.

17 years ago had mole removed on my back, which was melanoma. Last month had mole removed on my chest. metastatic melanoma. PET and CAT showed nodule on lung 1.5 cm. Both oncologist and thoracic surgeon said not Mets. It was. Surgery for Thursday for wider excision of chest mole at which I am NED.

Oncologist says do nothing but revisit every 3 months with scan. 20% chance it will never come back.

So, with 80% chance it will return, I am wondering if the wait and watch is standard protocol, or if I can be more proactive. Not that I want to do toxic treatment for nothing, but waiting is hard also. Thanks for your thoughts.

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Lisa13's picture
Replies 7
Last reply 8/21/2011 - 10:25pm

I'm 9 days into my ipi treatment and in the past 2 days have noticed irritablity BIGTIME!  I'm inpatient and very moody which is unlike me.  It's not all the time, but I have noticed something different about me. I know ipi can cause glandular problems which can cause irritability, but I don't think this would happen so qucikly. I don't really know if this is just me or the drug. Has anyone experienced this?

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Angela C's picture
Replies 2
Last reply 8/21/2011 - 8:57pm
Replies by: Jackie W, Goddard71

Hello.

I am scheduled for SRS to a brain met and I'm having it two days before my 30th birthday. We have plans for my birthday and I'm worried that my face will be all swollen, and I've also heard that it can cause brusing. I just wondered how many of you experienced this and if there is anything I can do to try and lessen the swelling and bruising?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Jamietk's picture
Replies 8
Last reply 8/21/2011 - 7:49pm

Just posting to give a little hope to stage I and stage II (and any stage really). This week or next, can't remember which, is my 6 year anniversary. Isn't that great that its been so long I can't remember the exact date in August? I was dx borderline stage IB/IIA (2.0 on one path, 2.1 on the other), SNB neg. I'm pretty sure I'm NED, as I had a CT scan in June due to abdominal pain (turned out to be an abcess on my ovary and a major pelvic infection, which was all removed by a Gyn Onc and no cancer found). I go to MDA in October to gain my official NED status.

Here's hoping for many more years of NED for all of us.

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dutchchic's picture
Replies 2
Last reply 8/21/2011 - 7:35pm
Replies by: BarbieGirl

Just wondering if anyone knows the best Melanoma Oncologist in the Dallas area?  

 

Thx!

It's all about the TUDE! Is Jesus driving your journey?

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~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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