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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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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Jean-9's picture
Replies 31
Last reply 2/25/2012 - 3:04pm

Hi

This is my first experience with a melanoma site.  I was diagnosed with Anal Melanoma in March of this year.  After many trips to the Doctors it was determined that the cancer has not spread at this time.   My lesion was quite big on the melanoma scale 6.75 mm Can anyone share their experience with stage one Anal Melanoma?  

Thank you,

Jeannine

Today is a choice. Today I choose grace over impatience, laughter over worry and beauty over negativity. Sometimes the only thing we have control over is our attitude.

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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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NYKaren's picture
Replies 22
Last reply 9/8/2011 - 10:19pm

Hi everyone.  

Got the biopsy results yesterday.  On the initial mel section next to my ear, the ipi has killed the cells on the surface, but they're still there beneath the skin.  The new area next to that section and very close to my eye is indeed melanoma.  Very disappointing to hear that it's still spreading.

I am at week 14 of ipi (had 4th and final infusion at week 10.)  So far, I'm a partial responder.  Dr. Wolchuk said that hes seen people still growing mel at week 12 with a big turn-around at week 16.  But he also says that I need to think ahead as if I will only see a partial response.  Nobody's happy.  I am absolutely not a candidate for another surgery...there's no room for margins either near my eye or my ear, which it's touching.

 Attn Jimmy: Interestingly, Dr. Halpern (in conjunction w/Wolchuk) prescribed Aldara (now available in generic).  I'm to put it on generously (use the whole packet) every night, and cover w/saran wrap for about 30 minutes.  They're hoping it will work w/the Ipi.  He also said that since it's so close to my eye, my eye-lids might blow up.  

Aldera Question:  I know the skin is supposed to react--do you stop the aldara if it blisters, etc??  I feel so vulnerable because Halpern is on vacation this week & Wolchuk is away as well. And I feel so stupid because Halpern told me that it's supposed to blister, but I didn't ask him what to do then, and now he's away! (Yes, I know that there are other docs at Sloan, and I will call them this week.)

Empire BC/BS paid for all my Ipi infusions BUT THEY WOULD ONLY PAY FOR 15 PACKETS  OF ALDERA for one month!  I'm hoping Halpern's office can fight it.

Meanwhile, we're seeing Dr. Wolchuk on Sept. 1.  If I haven't miraculously responed fully to the Ipi, we have to decide next step--a combo of 3 chemo drugs (I stupidly didn't write them down) or IL-2.  They don't give IL-2 at Sloan, but at Yale-New Haven.  Also, I'm Braf negative.

My husband heard him say that both chemo and IL-2 have a low response rate--does 20% sound right??  I'm sure I heard that if one responds to IL-2 it's a lasting response.  He said that the chemo doesn't have many side-effects, and I already know how brutal the IL-2 can be.  My 21-year old son says "go for the most aggressive treatment."

I guess it's wait and see with the ipi/aldara and more decisions on the 1st.

All advice, suggestions welcome!

thanks,

karen

 

Don't Stop Believing

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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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Gene_S's picture
Replies 12
Last reply 8/21/2011 - 6:21pm

Update on Gene:  The inoperable tumor on the head pushing on the spine is gone and has new cell growth on the spine, the big one in the liver is 75% shrunk,  the one in the lung is gone and all the others in the liver have greatly shrunk or totally are gone. 

Hopefully by week36 he can be NED.

Now that is some great news. 

Thank you all for your prayers we both really appreciate them.

Judy wife of Gene_S stage IV since Oct. 2010.

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

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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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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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shellebrownies's picture
Replies 7
Last reply 8/24/2011 - 12:31am

Well, Don went in this week for a CT scan and brain MRI after having his 4th chemo treatment. I had been concerned since after the 3rd round when his LDH numbers started creeping up instead of coming down. Unsurprisingly, the scans showed some regrowth. (They also found a small blood clot in his lung, so now we add blood thinners to the ever-expanding list of medications he takes...)

Our plan B was the Compassionate Use Zelboraf trial. So we go in yesterday for his EKG and derm appointment for the trial. While we were there, Dr. Lawrence comes in to see us. He said that they got the test results back from the tissue sample...and that Roche is saying that Don is NOT BRAF positive!

This was the SAME sample that was used in May when we were trying to get in to the GSK BRAF/MEK trial...the same one that came up BRAF positive on their test!

Now this gets complicated. The doctor said they are appealing to Roche to try and get Don accepted to the trial based on the other BRAF test. However, now that the drug has been FDA approved and the FDA requires that the drug can only be prescribed after a positive result with a FDA approved test (as in only Roche's test), I'm not sure if that's going to happen.

There has been talk about perhaps taking another tissue sample if their appeal is denied. But, what happens if that comes back negative?

Sigh. Wish I knew. We meet with Dr. Lawrence on Monday; maybe we'll have better news then.

 

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Jan in OC's picture
Replies 4
Last reply 8/21/2011 - 1:25pm

I have been at MD Anderson since 5 am...just got back to the hotel (after 8:30pm).  The surgery went good, the doc removed one tumor 10mm x 10mm from his left frontal lobe and he was pretty sleepy and in some pain (big headache). 

The Neurosurgeon also delivered some bad news that I have not been able to speak to Dirk about yet.  Last week's MRI showed just one large and 3 small mets in his brain.  Last night's pre-surgery MRI showed 8 small mets now.  I had a few tears and lots of cursing in my mind.  CRAP!   I will get the results of the post op MRI in the morning.  We will talk to Dr. Papa on Monday and decide where to go from here.

Our UCLA Oncologist (Dr. Chmielowski) called today to check on him and said that he was glad that we were at MD.  He said it was the best place for Dirk right now, so I just need to stay positive and believe that we can beat this latest set back.

To Desiree, I sent you an email with my phone number...look for a message from oldhippielady50@yahoo.com!

Thanks everyone for your prayers and support.  I am very grateful that to the wonderful people on this board.  You have kept me sane!!

Jan, wife to Dirk, stage IV

laughter is the best medicine

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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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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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CAdesiree's picture
Replies 6
Last reply 8/19/2011 - 9:31pm

just came from meeting the new surgeon... i told him i was hoping he was going to tell me it wasn't necessary to cut it back open.  he said he couldnt do that.  the notes from the original MOHS procedure were very poor.  and Mohs isnt designed for melanoma because it does NOT achieve the margins needed.  he and his assistant even mentioned seeing "satellite" on my back (i'll be looking that up in a minute).  but he wants to also perform a sentinel lymph node biopsy.  i didnt think that could be done after the MOHS.  he says it not the most desirable timing, but it will be best at time of resection.  thanks to everyone that commented on the last post... you have all gotten me really thinking.  this new surgeon also said that my new dr wouldn't have referred me to him if she thought it was just a consult.  that i should speak with her directly, but if she sent me to him its because she has concerns as well.  so, im back at square on... trying to my head around all of this.  but i wanted to post what he said.

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emilypen's picture
Replies 5
Last reply 8/25/2011 - 4:41pm

Hi All,

My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

We heard that his lympocyte level was raised on his last blood work and the docs said that is a good sign, but it's hard to remain positive when he feels something new every day.

Last night he was up til 4am just worrying.

 

And for those that did not respond to IPI, what next? We've done MEK/P13k, BRAF , Dacarbazine and now IPI.

Any input is greatly appreaciated.

 

thanks,

em

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Jewel's picture
Replies 3
Last reply 8/21/2011 - 2:50pm
Replies by: Vermont_Donna, Phil S, Jewel

I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong. Did normal protocal when in June of 2011 when he was having Hip Resurfacing performed I noticed in the hospital that he had some new spots on his original site. Fast forward to July and they discovered that he had 3 local recurrances in the original site, after a PET scan and 2 MRI one on the brain and one on his leg it is showing only in the same original spot. He also has one node that showed up on his left groin. We are now scheduled to have another WLE performed with a skin graft and a LND. Our Dr said that they prefer not to just needle the node due to fear of spill. Now I asked our ocologist about treatment, and he said he was pretty sure that my husband could be "cured" again. We all know deep down what that means. My husband and I are from the Adirondacks and my husband is comfortable with our regular oncologist and doesn't want to change. My husband is incredibly optomistic and always has been....he knows he has cancer....but refuses to let it run his life.

What should we be doing different?

Thanks to all of you, you are all so incredibly brave and strong!!!

Best wishes

Cammy& (Ken)

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