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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arthurjedi007's picture
Replies 7
Last reply 7/27/2014 - 4:51am

Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/27/2014 - 9:42am

Just been diagnosed with stage 4 melanoma in liver spleen and brain.therefore would love to here stories from other stage 4 people about how long they been surviving it for and where they have it. Thanks

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KatB's picture
Replies 5
Last reply 7/27/2014 - 2:43pm

My husband and I will be moving to the Greenville/Spartanburg, SC area in the next few weeks and I am in urgent need of recommendations for hospitals and specific doctors names that we can transfer my husbands case to.   It seems like Gibbs Cancer Center may be our best bet as they are a comprehensive center and are affiliated with MD Anderson, but I'm not finding a melanoma specialist there.

Charlotte, NC would be a possibility as well.

2008: Dx Stage 2 - 1.24mm, ulcerated, right arm. WLE, SNLB.

2014: Dx brain met - 3.1cm resected 2/28/14.  TrueBeam 4/14. Start Ipi 6/14.

 

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Beth_A's picture
Replies 10
Last reply 7/28/2014 - 9:29am
Replies by: mary1233, Beth_A, Anonymous, Kim K, RJoeyB, hbecker

I just received a phone call this past Tuesday letting me know I had melanoma. I got a copy of the pathology report that was obtained from Mayo Clinic - apparently my local lab sent it to them due to coming back "atypical."  The patho report is pretty frightening, especially when paired with excessive web searching. I was going to wait for my family practice NP to refer me to a dermatologist, but instead I called the Melvin & Bren Simon Cancer Center in Indianapolis, IN  to try and get an appointment. They were super nice and helpful, after getting a copy of my patho report they set up an appointment for next Tuesday with a Dr. Swartzentruber. I looked him up and he has a great reputation, so I feel good about that. I'm really anxious though and hope my appointment will help resolve some of the incredible anxiety. Nice to land somewhere that has people familiar with this problem :)

Beth A.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/28/2014 - 5:36pm
Replies by: natasha

Hi,

I had a mole removed a month ago and was diagnosed with invasive superficial spreading malignant melanoma.  I went back a couple of week later for a wide local excision and I had the stiches out 2 weeks ago.  I have just managed to get a copy of my first pathology report and it says the following:

Ellipse of skin measuring 16x7mm with 4mm of underlying tissue.  On surface there is a slightly raised roughened pigmented area measuring 5x5mm

HISTOLOGY

The sections show skin with underlying adipose tissue and containing invasive/vertical growth phase superficial spreading malignant melanoma.

It is predominantly in situ but there is focal regression.  The small amount of invasive melanoma has a Breslow thickness of 0.4mm and infiltrates the dermis the Clark's level II.

No vascular invasion is seen.

There is a moderate tumour associated lymphoid infiltrate.

Dermal mitotic figures are not seen.

There is no surface ucleration and satellite lesions are not present.

The lesion appears completly excised with the nearest transverse margin at 2mm and the deep margin at 4.5mm from the invasive component.

I have a couple of questions and would appreciate it if anybody could help me:

1. Does Invasive and Vertical Growth Phase mean the same thing?

2. If it has had regression, does that mean it could have been deeper before my immune system attacked it and therefore could have already gone elsewhere?

3. It says the deep margins is clear by 4.5mm but it says only 4mm of underlying tissue was removed and if bresolow thickness 0.4mm  then that doest add up exactly.

4. Should I have had my glands checked as I havent and I will be getting them checked in 3 months time?

I may be looking in to this all too much but ive felt so unwell with asthma and stomach pains, it makes my imagination run away with me and I start wondering if its maybe something worse.

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Rocco's picture
Replies 7
Last reply 7/28/2014 - 5:49pm

Wanted to share some hope for others.

Scans last week revealed I'm still NED!  Now scanned every six months. Continue to be very thankful for all the support and hope I've received off this bulletin board over the years. 

Hang in there!

-Roco

Diagnosed Stage IV  in 2005. NED thanks to MDX-010 (Ipi 10MG/KG) Compassionate Use trial in 2009, all the talented and compassionate doctors and staff at DFCI in Boston., and many, many hours of prayer.

 

Luke 1:37

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Anonymous's picture
Replies 6
Last reply 7/28/2014 - 7:56pm
Replies by: Anonymous, buffcody, ncdaniel, King
On June 13, 2014 my father was diagnosed with stage IV melanoma of the small intestine.
 
A few days earlier my father told his heart doctor that he was feeling fatigued for a couple months now which then they decided to do blood work. His hemoglobin game back at 6.5.
 
After the blood work came back we immediately went to the ER for a blood transfusion. Due to my fathers heart condition they could only give him so much blood. After the transfusion his hemoglobin was at 8.6. They immediately started him on ferrous sulfate (iron) which naturally raised his hemoglobin to 10.3 and his holding steady. 
 
Once the pet scan and cat scan came back, it showed a couple mets on his lung, heart wall, chest muscle, groin and thigh muscle as well as the three tumors in his small intestine. The doctor at Toledo said we needed to test for BRAF and start treatment right away. Why wouldn't they remove the ones in the small intestine?
 
We immediately knew that we wanted to see the melanoma specialist up at University of Michigan and started the intake process. 
 
Since University of Michigan couldn't get us in till mid July, we pushed the Toledo doctor/oncologist to start my dad on something. Two weeks after he was diagnosed he started Yervoy. We refused to wait any longer. The Toledo oncologist has consulted the U of M specialist with every decision they have made for my dad because she was so nervous what the yervoy could do with his GI problems.
 
Our appointment with U of M was supposed to be July 15th but the specialist called us and cancelled it. Said they didn't feel comfortable transferring his medical care during treatment. Everyone wants us to go up to U of M but I don't know why there is a problem with transferring treatment? 
 
He just had his second treatment and has had no side effects besides fatigue and we pray it stays that way. He says he feels nothing is wrong. Hemoglobin is steady above 10, no pain and his appetite is great.
 
The doctors say they are extremely confident in Yervoy. And that they want my dad to finish the Yervoy treatments at Toledo because it's exactly what they'd be doing at U of M. Also that they've been working together on his treatment. U of M said after the fourth treatment they will do pet scans and cat scans to determine how the Yervoy worked. If it didn't work they would put my dad in the trial coming up at the end of his treatment.
 
Is it common not to transfer during treatment? Should we look for another specialist? It seems as though the Toledo oncologist and the U of M specialist are working side by side. When we speak with them separately they say the same thing.
 
Am I overreacting? I feel as though I need to calm down but this is my dad and i want the best care for him.
 
Kind words of encouragement are appreciated as this is really hurting us.
 
Thank you
Kiley
 

“Nothing is impossible, the word itself says 'I'm possible'!”

― Audrey Hepburn

 

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tcell's picture
Replies 5
Last reply 7/28/2014 - 8:00pm

http://cancerdecisions.com/index.php?main_page=product_info&cPath=86&products_id=412&zenid=b2f8ef42bba6e474764c79d58e393cf3

Does anybody know if this is worth almost 300 bucks for the download version? Is it up to date? Is there sufficient information in there about alternative treatments, etc???

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angtom's picture
Replies 6
Last reply 7/29/2014 - 5:45am

My husband has stage 4 melanoma and has been accepted to the TIL trial at Moffitt he is BRAF negative, my question is what is our back up if this does not work? I am just trying to get all of my options as a precaution. He will be doing the IPI - IL-2 Immunotherapy first IPI is on August 1st. I would appreciate any advice or anyones experience with this trial as I want to try to make him as comfortable as possible during these procedures. He is a healthy 51 year old and still working 6 days a week 10 to 14 hours a day, against my advice but it keeps him sane. I welcome any and all feed back, thank you so much.

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jualonso's picture
Replies 2
Last reply 7/29/2014 - 9:18am
Replies by: Ginger8888, jack6020

Hi folks,

No one of us would like to be part of a big trial like this, but unfortunately we are.

Im thinking to collect some datas of each of us (just stage iv) that i think, crossing them we will be able to get some answers about why some treatments work o not. May nothing can be gotten but who knows, we are a lot of people and perhaps with a lot of data is possible to realize of something. This is just and idea. what to do you think about it?

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Replies by: fortiz, tcell, jualonso, Anonymous

Hi folks,

Finally i have decided to stop with combo, i was talking with my doc about to start

Mek anti pd1, but the condition is to progress on ipi or braf inhibitors, then the only option i have is to stop taking pills before the next PetScan and show progression in it (now in NED)

Is a very tought decision but i dont have any other option if i want to avoid resistance and still keep these drugs with pottencial for the future.

I would be very gratefull any help from someone who has follow the same path

 

Juan

.

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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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Tracy Chicago's picture
Replies 4
Last reply 7/30/2014 - 10:47am
Replies by: Tracy Chicago, CHD, 5dives

Has anyone sucessfully insisted on lymphatic mapping for a Level 1 melanoma? I ask because my first primary was level 1 and then three years it spread to my lymph nodes, making me stage 3.  I now have a second level 1 melanoma in a different place. I'd like to request lymphatic mapping considering my history.

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curious12's picture
Replies 2
Last reply 7/30/2014 - 11:03am
Replies by: curious12, Anonymous

Hi! I've had melanoma in-situ and my sibling has. We have tons of moles and I've probably had 50+ removed. I'm pretty knowledgeable on all things melanoma. My 8 year old son has a a new small, red/flesh colored bump on his forehead. It's very harmless looking (doesn't itch or hurt) but it isn't going away. It has only been maybe 12-14 days. I know melanoma in kids can present this way. I WILL get it biopsied if it doesn't go away of course, but what timeframe do you think is reasonable to wait? I was thinking 2 more weeks and then get it cut out, but is that crazy? I don't want to let my anxiety take over and cut into his face too soon! Don'T care about scars, but realize there are a million benign things that are more likely. Saw a derm today-- she wasn't sure. Said looks harmless- - maybe cyst or insect bite. There is no head to it. She said to come back in 4-6 weeks if still there.. but I don't even want to wait that long!!   He also has a very dark brand new dark spot on sole of foot that two derms say looks fine, but I don't like it (it's 1mm) It's almost black and on the sole of foot.. considering biopsy as well.. Would love to know if I'm being reasonable or overboard. 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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