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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I didn't see mention of this on the board, and the information was only recently added to clinicaltrials.gov, so I thought I would put this out there for anyone who might be interested...

Roche is teaming up with Bristol-Myers Squibb in testing Yervoy AND Zelboraf to see if they are safe to be taken in conjunction with each other as well as to test if effectiveness and response time will improve when used as a combination.

I thought this a highly interesting trial and wished we had had the time to wait for this one to open for Don to get on it, but we were told that even though the trial is slated to open in September, it would probably be November before testing sites would be ready to begin recruiting.

The first three testing sites are going to be located in Boston, Los Angeles, and New York. I know that MGH will be one of the sites in Boston running this test.

Here is the link for anyone interested in reading more about it: http://clinicaltrials.gov/ct2/show/NCT01400451?term=melanoma+boston&recr...

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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awg's picture
Replies 6
Last reply 8/24/2011 - 10:09am

On Aug 12, 2011 I completed the last infusion of the 20 day cycle of High Dose Interferon. I feel that I was rather lucky as I only had side effects after the first Infusion and tolerated the Infusions fairly well. I am now on the 3 shots per week and experiencing little to no side effects from the Injections. I am grateful to have made the turn from infusion to injection.

Even though I did well on the infusions the difference that I feel now from being on the lower dose injections is remarkable.

Hang in there if you are on the High Dose Infusions, it gets better.

 

Allen

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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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Ashykay's picture
Replies 5
Last reply 8/23/2011 - 11:28pm

Hi everyone,

Just thought I'd provide an update on my Mum. As some of you may know, the oncologist last Thursday basically waved Mum out the door and said good luck, no more treatments for you (apart from Gleevac - for which Mum has not tested positive to the c-kit mutation, only c-kit staining, i.e. highly unlikely to work!). During this appointment, Dad and I took in all of the research we had found and started throwing them at him to see what he said about each trial/treatment we had mentioned. As part of this, we brought up Yervoy. He was incredbily negative about it and said it had shocking side effects and didn't target rare primary spinal melanomas like my Mum's. On our persuasion, he agreed to refer Mum to an immunologist "jsut to be sure", but again talked abotu side effects and that this is basically a useless option.

Was he wrong (I am furious, just on a side note....).....Mum went to the immunologist yesterday, who had some options for Mum. He knew exactly what he was talking about, was spot on with facts, and it had appeared he'd done some research which was very surprising considering that no other doctors had done this before. He hasn't ruled out trying to get it all out via surgery, however he suggested Mum start on a trial they are doing at this hospital in Brisbane, Australia (which is the same hospital as where the oncologist is - NOT happy. Do these people talk to each other? Clear not. Sounds pathetic if you ask me). The trial involves Mum firstly going onto chemotherapy - not as treatment, but rather as eligibility to access Yervoy. The doctors will then put Mum on Yervoy, and at the same time, they will go in and take a large (being 2cm of the 5 x 4cm tumour) section of the tumour on her spine and formulate a vaccine based on the exact genetic makeup of her tumour. My understanding is that the Yervoy has the effect of removing the protective "shield" on the tumour which prevents it being killed by the body's immune system, and while the shield is off, the vaccine has the effect of going in and killing the tumour.

There are obviously risks with this approach - side effects of treatment itself as well as the surgery which is always going to eb risky due to the position on the sacrum. The immunologist told Mum that her chances of significant side effects would be 1 in 100, and I believe she is prepared to take this risk.

I'm not sure whether anyone has been through this treatment/trial before? I know quite a lot of you have been on/are on Yervoy? Would appreciate feedback :)

Feeling very relieved that someone is listening to us now and willing to trial something. I am trying not to get my hopes up despite being so happy and excited about this, as it seems we always get disappointed everytime we get our hopes up. Dad adn I will continue our quest to follow up doctors in Sydney, especially with respect to schwannomas - which they don't believe it is but we want to be sure.

Will keep you updated! Ashley

 

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Charlie S's picture
Replies 33
Last reply 8/23/2011 - 11:19pm

Nothing ceases to amaze me.  I've had more scans than many have had birthdays during all my seemingly perpetual skank prom dates with melanoma over my years. 

More often than not, my doc has had to drag me in for scans (usually after calling my mother !) because I  more often than not  would always blow them off. under the guise that I was busy living..  Scans were, and always have been a nuisance to me for many reasons.

I have this game of chance that I play with my doc prior to scans:  I always write down what I expect the results to be, put it in an envelope, lick it shut and when he tells me the results, I whip out my envelope to "score" how I did. .  Probably in most medical circles, that type of behavior would be considered as the ultimate smartass; but my doc is a nice guy and knows me well, so he puts up with me..

Tonight, after again blowing off scans for some time, I sat here and  stuffed my envelope in advance of my ct, pet and brain MRI tomorrow.

NEVER have I had scaniety, but  this time is different after stuffing my envelope.  I'm not looking for sympathy, good wishes or any of that., but know that there are times when we all doubt ourselves and when that happens is the time to step into your strength.

See, I'm not so tough after all !

Cheers,

Charlie S

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NicoleinVA's picture
Replies 4
Last reply 8/23/2011 - 10:01pm

Hello,

I recently had a WLE on lower left calf and SLNB.  The plan pre-surgery was to do a skin graft on calf.  At my pre-op consult with plastic surgeon he said there was a possibility he could close w/o skin graft.  I told him I was all for that as I know skin graft can cause problems.

I had surgery on 8/11 and they were able to close w/o graph.  I have a long incision on my leg (inch above ankle to two inches below knee) and it is very, very tight.  I'm sure part of this is due ot the fact I had a conservative excision done in this same are in May and they came back after melanoma diagnosis for more tissue.  Area around incision is very red and surg onc started me on keflex Friday due to redness, however incision is clean, no weeping, etc.

My question is this.....has anyone experienced this type of tightness and does it loosen up over time?  I can't put my full weight on foot yet due to tightness and it concerns me to some extent thought I know it is early.  Also, it's fairly numb but I'm assuming this is normal due to scar tissue/nerves and the fact that surgery was very recent.

Many thanks for your input.

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jimjoeb's picture
Replies 3
Last reply 8/23/2011 - 9:54pm
Replies by: dutchchic, jimjoeb, lhaley

I thought that I would pass on an idea that my husband came up with for mapping and monitoring our moles. He found a drafting template at the office supply store that has circles, triangles, etc. in pre-measured sizes.

He picked one that was large enough for all of my moles and then used a Crayola washable marker to trace the outline of the shape on me, around the mole and then took a picture of each one. Every month, we now only need to use the template against the mole and compare it to the picture to see if there are any changes.

Be Not Afraid-God is with you always Stage IIIa

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Our doctor has advised me to tell my daughter now that my husband is going to die from his cancer.  I am so in over my head and need help.  She is an extremely intelligent young lady, and knows that we have been fighting this battle without much success, but I don't know if I can say the words to her or even what words to say.

Any suggestions would be much appreciated.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Jamietk's picture
Replies 4
Last reply 8/23/2011 - 5:27pm
Replies by: jackiewin, Jamietk, jyc

For the first time in 6 years, I am going to fly to MDA instead of drive. I'm on annual check up of chest x-ray and blood work only. My Dr. appt is at noon on a Monday in October. We will have a rental car to return at the airport. I'd like to take the 5:30 flight home. Do you think that's pushing it? There is also a 6:30 and 7:00 flight home but they cost more and get in later. I know the hospital has travel services with Continental and they waive the rescheduling fee if you have to change your flight. But they are twice the price of Southwest so I'd like to book through them. I will be my Doctor's first appointment of the day so he shouldn't be behind, especially since my only tests are xray and lab. Do you think 5 1/2 hours is enough time between Dr. appt and flight time, assuming there is nothing found on x-ray and bloodwork and nothing to really discuss further? We're usually in and out pretty quick but I am not familiar with the Houston airport and how long it takes to get there from the hospital, return the car, and get through security. Thanks for any opinions.

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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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