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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Kdw2012's picture
Replies 5
Last reply 8/1/2014 - 1:20pm

I need some knowledgable information on which of these treatments I should choose to do? I was told that the Yervoy has a curative rate of approx 20% while Zelboraf is not.

We are waiting to see what the insurance will cover but my doctor told me to do some research and make a decision on which I prefer.

i am BRAF positive

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/2/2014 - 5:10pm
 
Hi! Well- for the past few months I was posting as stage 1b- But my surgeon just called and said they sent my lymph node to another pathologist who found 1 microscopic melanoma cell. I guess from here I get all other nodes removed will take interferon. I am terrified! I have a 6 month old baby and am afraid I won't see her turn 5. Is there hope???? Please tell me stage 3a could survive.
 
 

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ashleyelizabeth's picture
Replies 11
Last reply 8/6/2014 - 12:07pm

Hello all :)

I am a 27 year ok healthy mom of a 2.5 year old boy (my everything!!).  About 3 weeks ago my sister noticed a black mole on my back and said I should get it looked at.  Naturally I am a worrier and slight hypochondriac so I called my doctor right away.  She set me up for an appt. I went in and showed her my mole.  It was miss shaped light and black and raised.  All the characteristics I don't want to have.  He said she was concerned but not worried.  He said some back tomorrow and have it removed so I did.  I right away thought this is it, it'll be cancer and my life is over.  Well my whole family said it's nothing, don't worry, skin cancer isn't going to kill you.  

My doctor called me today after two weeks and said that it was malignant.  My heart stopped, this is so devastating!!! She said the biopsy says that the mole is localized and malignant and that I need to go to a plastic surgeon to have more removed.  

I don't even know what to think, I don't know what this means and I am trying har but all I can't think is my baby will lose his mom!! 

Any advise would be lovely!!

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madhatter84's picture
Replies 5
Last reply 8/3/2014 - 6:36pm

Hi everyone,

 

I haven't posted on here before - living in the UK and on trials with the NHS. My blog gives a good overview but basically I was diagnosed Stage 2 in May 2011 and that was upped to Stage 4 in Sept 2013 with 2 brain tumours removed and an inoperable pancreatic tumour diagnosed. I was then put on Vem however have recently been informed that I've got 5 brain tumours after having had WBR in May 2014. They are small but present (told a couple of weeks ago). I've now been pulled off Vem and put onto Yervoy - had my first infusion on Monday and so far no side effects with the hope of Gamma on the 5 tumours in my brain if they haven't grown. 

My question is are there any experiences of Yervoy and in particular with brain mets? They are the ones that are worrying me quite a bit. I still am working full time and at the moment haven't got any side effects from them (had a few headaches but no mobility or speech issues which is what I really want to avoid). 

Thanks in advance!

 

Andrew

http://positivelechley.blogspot.co.uk/

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Brigitte's picture
Replies 4
Last reply 7/31/2014 - 4:25pm
Replies by: Brigitte, Janner, Kim K

I was wondering if someone could help me understand my biopsy report. 

On top is says clinical diagnosis  Lentigo VS. MM  (does that mean what my docter dignosed and sent to the patholoogy, or what the pathologist diannosed? 

 

under that is says: Diagnosis: Compound Nevus with dysplastic Features.

Sections show a compound nevomelanocytic prolifeeration exhibiting dysplastic features, primarily in the form of lentiginous architectural disorder and asymmetry, accompanied by random, relatively mild, cytologic atypia. Junctional changes are focally advanced, perhaps indicative of progression, such that a conservative complete excision is recommended. 

Im a little freaked by the words focally advanced, perhaps indicative of progression. Does that mean that maybe I do have cancer but they cannot tell until they get the excersion biobsy?    Please help me understand what all this means. 

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Tracy Chicago's picture
Replies 2
Last reply 7/31/2014 - 11:43am
Replies by: Tracy Chicago, Janner

Hi! I had my second melanoma removed (level 1) and it's pretty small. Who should I have do my wide excision?  My choices are a plastic surgeon who specializes in melanoma or a surgical oncoglogist.  Would a surgical oncologist be over kill for a melanoma that was less than 1mm?

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RJoeyB's picture
Replies 5
Last reply 8/1/2014 - 11:52am
It's been about six weeks since I posted about this and wanted to give an update following my most recent set of scans.  Rather than recap what's been happening, here's a link to my post from June (apologies in advance, it's entirely too long, as is this post, but no one ever accused me of not being thorough ;-)
 
 
So I've been on Decadron for the past six weeks to try to reduce the swelling and perhaps resolve the motor control symptoms I've had in my left leg, e.g. limp and awkward gait, knee weakness, reduced ankle motion, can't curl toes, etc.  I've continued to take my daily walks, 2-3 miles in the evening and some longer ones on the weekend, but really didn't see any improvement in motor control.  Some days a little better, some a little worse, but overall about the same.  I've also noticed in the past couple of weeks new weakness and range of motion in my left arm — the top half of my left humerus is a 10" titanium rod from back in 2010 to remove one of my original mets, so it's limited to begin with, but this limitation is new and definitely related to the motor control issue.  My expectation going into the scans these past two weeks was that things would be stable at best, with no indication if this was new tumor growth or radiation necrosis.
 
My regular three-month PET-CT was last week and in addition to the continued vigilance for the dreaded "new met", there were a couple specific things we were on the lookout for:  continued response of the lung met that was treated with SBRT in February and an area of possible concern in my distal ileum (near where the small intestine and large intestine connect) that lit up on my April PET.  We know that the PET will rarely be able to show anything in the brain because it naturally lights up "hot" throughout, so weren't expecting any answers, only looking to keep things uncomplicated as we try to focus on whatever is happening brain-wise.  Good news with the PET.  The lung met didn't even get honorable mention in the report for either size or activity.  The intestinal area is lighting up still but doesn't appear to be associated with any mass; given that it was also scoped (lower double-balloon enteroscope, longer than a colonoscopy into the small bowel) in May with no clinical finding, there is string belief that it's transient GI inflammation likely associated with the partial small bowel resection where the tumor used for my TIL cell harvest was removed about three years ago.  We've seen it before but have to continue to watch it.  And no new areas of concern elsewhere on the PET.
 
Monday was the repeat brain MRI.  Given how things have progressed, or not, I was expecting that things were going to look about the same and we were going to be in the same position as we were six weeks ago, without any real answers and looking at another period or observation — and more cursed Decadron.  The news was a little better, considering that I haven't had any improvement in the physical symptoms.  The "enhancement" or new activity all around the edge of the original tumor bed has substantially reduced, and the area of cerebral edema (swelling) extending outward from there is perhaps half to two-thirds of the size it was on the last scan.  This isn't activity that would be expected of new tumor growth on its own — remember, I'm not currently actively receiving any PD-1, ipi, or BRAF/MEK therapies — so this is likely radiation necrosis. Still potentially serious, as necrosis can continue to advance and be as problematic as a tumor.  But it can respond to steroids or even on its own over time.
 
The fact remains that I'm still experiencing motor control problems, but they believe that the necrosis should continue to resolve and as it does, the symptoms will also improve.  Even if the swelling is only half of what it was before, it's still squarely centered in the "motor control strip", so may not improve until it fully dissipates.  The plan is to try tapering off the Decadron over four weeks, to see if the necrosis will continue to improve on its own.  We're going to add Trental and vitamin E, which can assist but aren't nearly as effective as the steroid — I don't know a lot about either with regards to necrosis so won't say much about them — then repeat the MRI in eight weeks.  Should I experience any worsening of physical symptoms, resuming the Decadron is an option, but they want to get me off them as soon as they can...  no argument from me, it's a miserable thing — I need a good night's sleep and look like Humpty Dumpty, among other things, and my family is probably ready to toss me on the street from the moodiness.  Truth is, I've managed O.K. compared to the severity of Decadron stories I've heard from others.
 
So, it looks like radiation necrosis that is improving.  There is a possibility that this could be cyclical, with "flare-ups" of activity, which means continued vigilance for necrosis or new tumor growth if things change and periodic or longer-term use of steroids.  But my radiation oncologist also said that even if that happens, there is usually a "hump", often around two years, where even cyclical RN starts to settle down.  
 
Altogether, though, the news is as good as we could have hoped compared to where we were six weeks ago and allows our family to collectively exhale a bit — time to focus a little more on daughter #2's college search and break some of these crazy Decadron food cravings — back to the Stage IV limbo.  Hopefully the physical symptoms start to improve soon.  Just wanted to share — we learned a little more the past six weeks, if only I could apply the time spent to learning to play piano or something...
 
Best to all,
Joe
 

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KimP's picture
Replies 6
Last reply 7/31/2014 - 3:43pm
Replies by: Janner, CHD, KimP, washoegal

Hi. Used to come here. First husband had melanoma and passed away 6 years ago. I just had mole biopsies with the subject line. Derm says it is cancer. I say it is not. What do you all say?  I was Horski or Kimmyie back then if any of you were here then.

KimP

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Beth_A's picture
Replies 7
Last reply 8/1/2014 - 6:25pm
Replies by: Beth_A, BrianP, washoegal, RJoeyB

Hi again to all. I met my doctor yesterday at the IU Simon Cancer Center in Indianapolis. He seems very knowledgeable and was extremely nice. He spent a lot of time with me and my husband, completed a very thorough skin exam (thankfully found nothing else of concern), and mapped out a plan. Unfortunately, the person who removed my mole was pretty much an amateur and opted to simply shave it off (she really thought it was a hermangioma). The lack of a punch biopsy muddies the waters somewhat as establishing depth is more iffy. The depth of mine was, according to the pathology report, at least 1.05mm. He's going to take a margin of 2cm to be certain and on the safe side. He further explained he would be getting a SNB, and going for my left axilla - but may need to get one from both depending on what shows up during the lymphatic imaging as my lesion is just left of the center of my back. He stated there was only really about a 20% chance that it had spread to the lymph nodes! which made me feel substantially better. He did go on to explain that, if positive, all the lymph nodes in that location would require removal. He added we would be having other conversations if this were found to be the case. So my wide excision is scheduled for next Wednesday at 0900, but I'm to report there at 0530 to prepare for my lymphatic imaging at 0700. Won't know my staging information until the pathology reports come back on my surgery - about ten days from the surgery. Hope things go uncomplicated and well - I'm planning to go to Glacier National Park for an annual trip there by mid-month and I'll have a new grandbaby to start spoiling in Calgary, too! Dr. Schwartzentruber said hiking would be ok, and anything needing further attention could wait till I got back. He also gave me a most valuable piece of information for anyone early in treatment. He said not to give up doing the things I enjoy doing that involve the sun - for example, I am a landscape photographer and hiker - but to either cover up or wear sunscreen. I appreciated that as I, like I'm sure many newly diagnosed people do, was worried this meant my outdoor days were over. I'm afraid that would have been difficult for me.

I wanted to return here to say thanks for letting me know what to expect - you all were spot on with your information. Your support was and is welcomed and appreciated. 

 

 

Beth A.

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/31/2014 - 1:48pm

Hello,

 

I'm not oncologist, just a GP and I wish I can help one of my patient and friend here in Europe to access this treatment (or the other anti-PD-1 antibody) ...

Is there a way to get it under "compationate use" she will pay for it , is she can afford...

Looking for any assistance in this way,

 

thank you for this usefull board

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jualonso's picture
Replies 1
Last reply 7/30/2014 - 5:17pm
Replies by: Anonymous

In the 16 and 17 page of thie document there is a interesting study, because oc my english i dont understand as well as i would like, could someone do a easier conclusions?

www.seom.org/seomcms/images/stories/recursos/Boletin_91_pub.pdf

 

 

Thanks

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/30/2014 - 12:03pm
Replies by: Anonymous, arthurjedi007

Hello -

Im currently a care taker (along with a few others). My "patient" was diagnosed stage IV in January of this year. Primary was a mole on his side, but the initial diagnosis came from the removal of a tumor on his side. Pet scan showed melanoma had spread to liver, spleen, pelvis, abdomen, spine, right arm & lungs. Before the test results came back for the BRAF mutation he did one round of Ipi. Before his second round they switched treatment and put him on the the MEK combo. In the end of April his LDH started coming down and tumors show stabilization and some decrease. Things stayed like this till end of June. His LDH started rising again and although the origin tumors still remained same and some decreasing two new  tumors came up in his soft tissue. He started back on the Ipi three weeks later. He's now had two rounds and of Ipi and radiation on his arm and pelvis to help levitate some pain he's in. Recently he's started having spasms and twitching. I don't know whether to attribute it to the disease that may have moved to the brain or all the medication he's taking? The other think I wonder is if the Mek combo caused the stabilization or if it was the initial round of Ipi that kicked in. My fear is that he won't make it long enough to see if the Ipi works.

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Nell's picture
Replies 2
Last reply 7/30/2014 - 5:15pm
Replies by: Anonymous, Mat

Has anybody had loose green stools during treatment with yervoy?

One voice can make a song; one life can change the world.

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Anonymous's picture
Anonymous
Replies 0

You would think being outside on the skin that skin cancer would lend itself even more to this. . . .

 

 

Chicago Tribune

Angela Zimm, Bloomberg News,
30 July 2014,
1260 words,
English,
TRIB,
1,
Copyright 2014, Chicago Tribune. All Rights Reserved.

Which is better at detecting cancer, a laboratory or a Labrador retriever?

Consider the talents of Tsunami, a dog with attentive eyes and an enthusiastic tail wag for her trainer friends. University of Pennsylvania researchers say she is more than 90 percent successful in identifying the scent of ovarian cancer in tissue samples, opening a new window on a disease with no effective test for early detection that kills 14,000 Americans a year. When found early, there's a five-year survival rate of over 90 percent.

With 220 million olfactory cells in a canine nose, compared with 50 million for humans, dogs have long helped in search-and-rescue missions. Now, a growing body of evidence supports the possible use of canines by clinicians. The largest study ever done on cancer-sniffing dogs found they can detect prostate cancer by smelling urine samples with 98 percent accuracy. At least one application is in the works seeking U.S. approval of a kit using breath samples to find breast cancer.

"Our study demonstrates the use of dogs might represent, in the future, a real clinical opportunity if used together with common diagnostic tools," said Gian Luigi Taverna, the author of the prostate cancer research reported in May at the American Urological Association in Boston.

While smaller studies have long shown dogs can sniff out a range of illnesses, the question of whether they can be used on a large-scale basis has drawn skepticism. Questions remain about whether one type of dog is better than another, how to systemize their use and the financial viability of any such system. As a result, most current research is looking at how to copy the canine ability to smell disease either with a machine or a chemical test.

"Our standardized method is reproducible, low cost and noninvasive for the patients and for the dogs," said Taverna, the head of urology pathology at Istituto Clinico Humanitas in Rozzano, Italy, in an email.

Taverna tested the ability of two professionally trained explosive detection dogs, Zoe and Liu, in 677 cases to assess their accuracy, according to his paper. The next step, according to Taverna, will be to extend the research into prostate cancer subgroups and to other urological malignancies.

The results may one day be used to help develop an electronic nose that follows nature's lead in how a canine nose works, he said.

Taverna's finding comes as standard PSA testing for prostate cancer is challenged as not accurate enough, with false positives leading to unnecessary treatment.

In 2012, the Preventive Services Task Force, which reports on medical issues to the U.S. Congress, recommended that healthy men shouldn't be screened for prostate cancer using PSA tests after research showed that false positive rates may be as high as 80 percent. The test measures a protein made by prostate cells called prostate-specific antigen.

When dogs sniff for cancer, they are detecting the chemicals emitted by a tumor. These chemicals are referred to as volatile organic compounds, or VOCs. VOCs have been found in the breath of lung cancer patients and colon cancer patients, as well as in the urine of prostate cancer patients. The most recent findings have spurred increased interest in dog cancer-detection research, including efforts to develop devices that can mimic the animal's olfactory system.

Dina Zaphiris, a nationally recognized dog trainer who works with canines on federally funded studies in detecting early cancer in humans, is leading the charge for Food and Drug Administration clearance of a system that would use the olfactory talents of dogs in medical care.

In 2009, Zaphiris, a dog trainer for 25 years with an extensive list of celebrity clients and an education in biology, founded the In Situ Foundation, a nonprofit organization that trains cancer-sniffing dogs and conducts research in the field.

Her organization is submitting an FDA application for approval of a canine medical scent detection kit. In her system, patients exhale through a tube on to a cloth, which captures molecules, or VOCs, of a malignancy. Trained dogs would then sniff the cloths for their presence. The dog screening would be an "early warning test," she said, possibly used in connection with a mammogram for reviewing results before proceeding to a biopsy.

"You should see the amount of emails I get saying, 'I got an unclear mammogram, and I don't know if I want a biopsy, so could I have dogs screen my breath sample?' " Zaphiris said.

Zaphiris' interest in the issue began in 2003 when she worked on a study to detect breast and lung cancer. A paper on that limited study, published in 2006 in the Journal of Integrative Cancer Therapies, found that dogs could detect lung tumors with 99 percent sensitivity and 99 percent specificity; for breast tumors, results were 88 percent sensitivity and 98 percent specificity.

Now Zaphiris is working with Jeffrey Marks, an associate professor of surgery and pathology at Duke University to train dogs to detect breast cancer, she said. It takes about six weeks to teach a dog, and Zaphiris says she usually trains a new team of canines for each one, working at her 3-acre facility in West Hills, Calif.

Zaphiris isn't alone in her quest to get dogs involved in medical care. At the University of Pennsylvania School of Veterinary Medicine, researchers are studying whether dogs can find ovarian cancer in tissue and blood samples. If so, it would be a breakthrough for a difficult disease.

"We're trying a multiprong approach," including the dogs and laboratory efforts, "to determine if there's some signature in blood in women with ovarian cancer so we can develop a detection system," said Cindy Otto, director of the university's Penn Vet Working Dog Center in Philadelphia.

The project, which began last year, is now focused on training the dogs using tissue samples from both cancerous ovaries and ovaries with benign disease.

Tsunami, the German shepherd named for her tendency to come happily at you when you least expect it, has been particularly successful early in her training, Otto said. When she's working, she becomes quiet and pensive. She works slowly, circling a wheel containing blocks of samples. She sniffs, she stops, she thinks, Otto said. When she identifies cancer, she sits; that's the sign.

The research effort is a collaboration among chemists, doctors and physicists at the university, with a primary focus on developing an "electronic nose" that duplicates a dog's ability to smell disease. Otto said she doesn't think using dogs in a clinical setting would be practical.

"The challenge is the expense," she said. "If you're talking about screening every woman from 25 to 90, that's a lot of samples."

Zaphiris said the medical system shouldn't wait for the development of technology that can accurately sense cancer with the ability of a dog. Her goal is to open canine scent detection centers that will make her animals accessible beyond just their use for research.

"If there is a machine as accurate as a dog, I say do it," Zaphiris said. "It's highly impractical to wait until the machines can catch up."

  

Chicago Tribune

 

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Sherri's picture
Replies 1
Last reply 7/30/2014 - 1:10pm
Replies by: Janner

Hi this is my first time posting.  I'm especially interested in Janners response:). I've read a lot of your replies.  I had a .3 mm depth stage 1A in November.  In June of this year I was told I had an in situ on my back but I go to U Of M for surgeries and my derm sends the oaths to them....they changed that ex to moderately atypical hyperplasia.  We still did the surgery as if it were in situ.  I know I shouldn't worry about recurrence?  But what are my chances of a second primary with dysplastic nevus syndrome?  I've had so many answers from we don't put a number on it to 20% from a good derm who said whether a person has one dysplastic mole or 50 their chances are 20% for a second primary.  I have two boys so young and this consumes me where I'm going to counseling.  I know someone who sees an oncologist and a derm for a stage 1 and yhe oncologist just does a second body scan and checks nodes and blood.... Thoughts?  This is so new to me that I need info!  I sure am afraid of this:(. 

 

Sher

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