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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Shimian's picture
Replies 4
Last reply 9/3/2011 - 3:31am

My father's deep primary (4mm) on his feet was surgically removed in early 2009. We recently noticed a few  little dark new spots not far from his primary. The dermitoglist did a punch biopsy on one of the spots in Mid Aug 2011 and the result shows Melanoma InSuit (less than 1mm). We like to surgically remove those reoccured spots asap. But owing to scheduling and other complicating factors, the doctors can't perform the surgery until a few months after the biopsy. And the doctors say it is OK to leave the Melanoma Insuit for a few months as those spots are not invasive. We suspect doctors' rationale (or excuse?) and are concerned about the long lead time between biopsy date and surgery date.

Nomarlly how soon shall the surgery be performed after bad biopsy result? What is the max time surgery should be done after the biopsy? Not sure if the biopsy would stimulate the melanoma growing into more advanced stage in a few months. The doctors dismissed our concerns. But I like to check with your guys on the forum.

Appreciate if you can share with us your thoughts and experieces.

 

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manu000's picture
Replies 3
Last reply 9/2/2011 - 7:34pm

I had read about this technique, however, so far I have not informed because we had available and that the drug ipilimumab for BRAF mutation, but in a week these options are gone.

I wanted to ask you for information about this technique, I know that few people have the characteristics to use it. Have any of you tried?

What are the requirements?
How does the treatment work?
There is a withdrawal prior to cloning?
cloning of cells for how long?

They welcome any information and experiences you have.

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dani_elle's picture
Replies 3
Last reply 9/2/2011 - 10:03am

Hello everyone
I'm in need of some opinions/advice for my husband.
He's currently stage 3... And he just got his 2nd set of ct results back today. His first ct scan showed a 5mm lung nodule back in may. Now 4 months later the nodule showed to have "possibly" grown 2 mm more. So he now has a 7mm lung nodule. His oncologist said he would prefer to wait it out another 3 or 4 months and compare again. I understand that sometimes these nodules are normal but for some reason we're still uneasy about the 2mm difference, even though the Dr has clearly told us they don't know if it's melanoma or not.

Our second concern was regarding interferon. My husband had decided he wanted to do the high dose interferon rather than wait and observe. So we went in to see the oncologist with that in mind. Well turns out he has to get the 5 year low dose because infusion centers were full. I don't get why that was even an option if it wasn't going to be available, but we figured something was better than nothing and the dr said it was pretty much the same thing. So I've been researching and have been getting different answers. Can you guys share some info with us regarding high vs low dose interferon!?!?

Thanks.

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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Ashykay's picture
Replies 2
Last reply 9/2/2011 - 12:36am

Hi there,

Thought I'd keep updating the process with Mum. Since I last posted the hopefully immunology response being the vaccine & Yervoy, there have been a few changes (not significant). Immunology response was Yervoy + vaccine created via large biopsy of tumour on spine (+ chemo before Yervoy to get access to Yervoy).

Radiologist & oncologist are almost sure that the radiation that Mum had for 4 weeks on her spine had little or nil effect, as they alluded to earlier. The oncologist is not confident that Gleevac would work (which was his only alternative apart from seeing an immunologist)...which is what Dad and I suspected all along, as Mum is not positive for the C-kit mutation. We will revist this if need be - i.e. if immunology approach doesn't work.

Mum has seen her (stupid - it appears, no offence to generalise, that they are all completely full of themselves!!!!) orthapedic surgeon....he wants another MRI as he personally does not entirely believe that the radiation hasn't worked, and believes that an MRI may give him a better idea of whether radiation has affected inside of the tumour itself. He talked about all the risk factors involved in taking this large biopsy due to the location of Mum's tumour, but has agreed, however, that he will basically do the large biopsy if required, whcih is a relief.

Mum still needs to talk to the immunologist now....but Dad is talking about just trying Mum on chemo first along with Yervoy before we go into the vaccine/large biopsy part of things to minimise risk. They also said if Mum gets another metastasis that they could formulate the vaccine on that (at the moment, apart from a spot on her leg which was radiated, there are no other metastasis than the main tumour on the spine).

Things have been challenging for me lately. We received some news that there is also a genetic syndrome running in the family and my Nan has tested postive for it...which means that my Dad + myself could be carriers...which would affect my ability to have children naturally. They say bad news all happens at once (and in three's!)....

So that's where things are at now...will keep you updated once the next appointment comes up.

Hope you are all doing well and keeping positive... x A

 

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CKasper's picture
Replies 21
Last reply 9/6/2011 - 7:14am

In 1984 I was pregnant with my second child and was diagnosed with Melanoma.  Two skin lesions one on my right wrist the other on my right ankle.  I was to further my treatmet but I prayed to God to let me live so I ignored it and lived until 2005 when it came back with a vengence.  Stage 3B, i think.  In 2006-2010 when through surgery, and all kinds of nastsy illnesses.  Then came the biggest scare of them all.

October 2010 my husband of 36 years left me for a girl 20 years younger then he.  He said he just couldn't live with someone dying. So he took most of the valuables, left me no money, no food, no heating fuel for winter, a bunch of unpaid bills and I was in shock..  This has been just as hard if not harder to deal with than my second ourrence.

 

36 years down the tube, thank you melanoma.

 

C

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Wetterhorn's picture
Replies 10
Last reply 9/3/2011 - 11:16pm

Hi all,

Been a while since I have posted, but the nerves have driven me back to the site, partially looking for answers, partially just for a little comraderie.

So, quick update on me - I was NED for 18 months until this past Feb, when I had a lesion develop in my small intestine. Had surgery to remove it and all was looking well until complications from the surgery struck with an intestinal obstruction. 3 hospital stays later, I finally had surgery again to remove a ton of scar tissue that had formed (and was the cause of the obstruction). At the time of my 2nd hospital visit, prior to surgery, a small lesion was detected in my liver by CT.

So, instead of surgery right away, I opted to go on Ipi. I go in for my last treatment on Tuesday next week and will get scanned shortly thereafter. However, this week I started having very bad headaches. They have not gone away since they started on Monday. I am scheduled for a Brain MRI tomorrow, and obviously a bit of a nervous wreck over this fearing the worst. 

Question - Has anyone else experienced headaches while on Ipi? I'm assuming headaches are a symptom of a brain lesion, are there others I should be on the look out for? I don't get results until Tuesday.

Bummed and nervous.

Wetterhorn

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Terra's picture
Replies 3
Last reply 9/5/2011 - 8:31am
Replies by: Terra, MariaH, jimjoeb

DOes anyone know how I can get HLA testing done in Canada I understand it is a simle blood test and I would like to get here while doing radiation before we go down to NCI so they have everything when we get there

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ad2424's picture
Replies 6
Last reply 9/2/2011 - 10:04am

Hello all

I had VAT lung surgery in July to remove a nodule and a wide excision in August. I feel healthy except I have a tickle in my throat and a cough which brings up minor mucus, and once or twice a day I feel a dull pain in my abdomen which goes away in a second.

My doctor told me that if I have a future problem it will not manifest in something I can feel, but I would prefer to hear from those in my shoes.

Am I just nervous, or are these problem symptoms?

Thanks in advance for your reply.

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jmmm's picture
Replies 2
Last reply 9/1/2011 - 1:53pm
Replies by: nicoli, FormerCaregiver

My husband is stage IV--he completed yervoy in July--it worked for a few weeks, but a follw up scan last week showed the cancer is growing.  His doctor mentioned there was a combination BRAF/MEK trail, but he wasn't doing one.  My husband is BRAF positive.  A few questions--is there a marker for MEK, or what would you need to qualify for that type of study.  Where are the BRAF/MEK studies taking place and is there any information about how well it works.

 

Thank you.

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manu000's picture
Replies 6
Last reply 9/2/2011 - 6:07pm

Hello guys,

Today we received a shocking news.
My girlfriend was not compatible with ipilimumab and decided to change therapy, and since it has the BRAF mutation to proceed with this therapy.
Today we went to the hospital to make the first pad and we were informed that the mutation is not consistent with that of BRAF, we have explained that the mutation but not the same as that required for the drug. In your opinion, could have denied the drug for BRAF lesions in the head?

Will now be subjected to strong chemotherapy that uses 4 different drugs.

I do not know what to think, has just finished the sessions of radiotherapy for head injuries and in these 2 weeks when she does not take chemotherapy feel better.

You have no idea what will have to take?
They will give us more information this week

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Mickster's picture
Replies 11
Last reply 9/2/2011 - 5:54am

Hi- All,

This is my first post on this website as i have only just joined. I was diagnosed with Stage 3 Melanoma In January 2010. Since then i have had numerous PET and CAT scans which thankfully show NED. However i still have a problem getting paranoid about every little thing that i feel or see on myself. Do any of you feel this and how do you treat or work with it.

 

Thank You

 

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Mickster's picture
Replies 0

Hi- All,

This is my first post on this website as i have only just joined. I was diagnosed with Stage 3 Melanoma In January 2010. Since then i have had numerous PET and CAT scans which thankfully show NED. However i still have a problem getting paranoid about every little thing that i feel or see on myself. Do any of you feel this and how do you treat or work with it.

 

Thank You

 

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JerryfromFauq's picture
Replies 3
Last reply 9/1/2011 - 9:02pm
Replies by: JuleFL, jimjoeb, eaca

http://oncologystat.com/news/Real-Time_Monitoring_of_Melanoma_Markers_Pr...

 

Real-Time Monitoring of Melanoma Markers Predicts Relapse
Elsevier Global Medical News. 2011 Jul 14, B Jancin

SEOUL, SOUTH KOREA (EGMN) - Serial monitoring of melanoma tumor marker levels in peripheral blood using a novel quantitative real-time reverse-transcriptase polymerase chain reaction method after surgical resection of melanoma has shown promise for the early detection of patients at high risk for disease progression.

The real-time polymerase chain reaction (PCR) assay measures circulating levels of five markers unique to melanoma cells: glycoprotein 100 (gp100), melanoma antigen gene-3 (MAGE-3), tyrosinase, melanoma marker A (Melan-A), and melanoma inhibitory activity (MIA) protein, Dr. Spyridon Gkalpakiotis explained at the World Congress of Dermatology.

He reported on 65 patients who underwent peripheral blood testing and analysis of the five markers every 3 months for the first 2 years after resection of their stage II or III melanoma, for a total of 2,925 PCR assays.

Twenty-six patients experienced elevated test results. All 26 relapsed during 5 years of follow-up; the 5-year survival rate in this group was 65%.

In contrast, only 1 of 39 patients with consistently negative real-time PCR assays experienced disease progression; 5-year survival in PCR-negative patients was 97%, reported Dr. Gkalpakiotis of Charles University in Prague.

MAGE-3 was expressed in 21 patients with disease progression. The next most sensitive markers of melanoma progression were MIA and gp100.

Dr. Gkalpakiotis declared having no financial conflicts.

I'm me, not a statistic. Praying to not be one for years yet.

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This article answers some of the questions about what multidrug (especially of unapproved drugs) faae i get tested as combinations.  This is just a brief statement from the article.

 

http://the-scientist.com/2011/05/27/take-two-of-these/

Though increasingly sophisticated research is making the selection and targeting of the right steps in a disease pathway more likely, how best to conduct clinical efficacy trials of combination therapies remains somewhat unsettled, Friedman adds. “The biggest worry is how to prove that the single agents are not providing sufficient benefit,” she says. While preclinical work may suggest that a combo therapy is the best way to go, testing the drugs in tandem makes it difficult to parse the effectiveness of each compound individually. And because demonstrating that the combo is better than either component on its own is one of the FDA guidelines, Friedman continues, Phase II studies may require multiple arms that test each agent in isolation as well as in combination.

Furthermore, the FDA guidelines are just that. The agency currently has no established approval protocol for novel combination therapies, making the undertaking risky and potentially expensive. That, according to Troy Wilson, president and CEO of the California–based biotech Intellikine, is why Big Pharma is first to launch into the novel-combination-therapy arena. Larger pharmaceutical companies are better positioned to take on the initial risk because they can spread costs across their large portfolios, he says. However, thanks to biotechs’ ability to efficiently pull together specialized research teams, there could also be opportunities for such firms to conduct smaller-scale preclinical and early-phase studies, Wilson adds.

I'm me, not a statistic. Praying to not be one for years yet.

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Jewel's picture
Replies 4
Last reply 9/1/2011 - 3:59pm

Hi Charlie S,

Weather you know it or not you have been an amazing influence on myself and many people on this board. I have only written a few times Since my husband was diagnosed in 2010.

Last week you wrote about feeling "spooked" something that not only made you seem human but more real for the rest of us. You have had melanoma in your life for a LONG time (something that gives the rest of us hope....yeah right lucky you)

Please let us know how you made out because I know you have MANY friends on this board who would like to know.

I for one would like to Thank You for your  No Bull**** advice. Keeping it real is what it is all about. Hope to be shooting the Shit with you for many years to come!!!!

Cheers,

Jewel

 

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