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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PlantLady's picture
Replies 9
Last reply 9/3/2011 - 10:29am

My husband Ron started Yervoy in June 2011, and had a second infusion in July.   He is stage IV MM w/no primary. His Yervoy treatment was suspended in August due to the side effects.

He lost weight right along, with the worst weekly weight loss being 8 lb, and another bad week w/ a 6 lb. loss.  He had diarrhea about 6 or 7 times a day, loss of appetite, weakness, overwhelming fatigue.  He's gone from 190 to 160 lbs. He's developed drop foot, and has lost so much muscle, including loss of his voice due to muscle weakness in the vocal chords.

He was put on steroids for the diarrhea, and takes Imodium twice a day, and still has 4-6 episodes of diarrhea per day, but his appetite has returned.

It is rough seeing him get so thin and frail looking!  He hasn't had an infusion since July 13.

He had a PET scan yesterday, and we will go to the University of Michigan Wed to find out what our future holds.

Has anyone else out there on Ipi suffered from D and been put on steroids for it?

Has anybody else had muscle wasting, and what have you done for it?

The doctor says the diarrhea and weight loss could be a positive indication that he is responding to Yervoy.  We'll see in 2 days. 

CJ - Ron's wife

If you're going through hell, keep going. ~ Winston Churchill

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rjcravens's picture
Replies 5
Last reply 9/3/2011 - 8:51am

Restarted interferon last night after having a week and couple days off. Took injection at eight, woke up at midnight with uncontrollable chills and shaking. My legs are killing me this morning and i feel like i have been run over......BUT.....i am going to remain possitive like everyone tells me and i am going to work my 6a to 6p shift today in hopes that i can make a difference in the lives of one of my patients:)

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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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Rocco's picture
Replies 16
Last reply 9/2/2011 - 10:24pm

Six years ago on 8/11/05 I was diagnosed with cancer and told it was mel.  About two weeks later during my 2nd opinion appointment I was told that I was Stage IV.  

Fast forward to Aug 2011 - I received results from my quarterly (August) scans.  Clean brain MRI and clean CT. 

Loving life today!

Rocco, Stage IV since Aug 2005

Luke 1:37

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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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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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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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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!?!?


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

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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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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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NYKaren's picture
Replies 7
Last reply 9/1/2011 - 9:29pm

Hi, I have an appointment w/Dr. Sznol @ Yale/New Haven tomorrow.  There is a possibility that I will be starting IL-2 on Monday.  I am extremely nervous!

I have read Jane's list of things to bring.  So, 2 cases of water is 48 bottles--divided by 5 days is 9+ bottles a day.  Is it really advised to drink 9 bottles of water a day?

any feedback much appreciated.  thanks,


Don't Stop Believing

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


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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rjcravens's picture
Replies 6
Last reply 9/1/2011 - 8:52pm

So, i started Interferon in May, sub q in june. Two weeks ago i started to feel like someone sucked the life out of me. I missed a couple days of work. Weak, nauseated, headache and sooo tired. I ended up passing out in the bathroom, giiving myself a black out. Went to doc. He said take a break, stop tretment for a week and restart at lower dose. He said my liver functions were up, lost ten percent of body weight, blood counts were low. Hbg and wbc. So i went from 12 units to restarting at 6 units. My queation is, is it still even effective?? He said if i had the same effects then we would have to quit. I dont want that. I want to know i did everything to prevent it from coming back. Any thought??

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rjcravens's picture
Replies 3
Last reply 9/1/2011 - 8:39pm

Please see my blog. i just started it and am looking for some advice from fellow melanoma warriors & family. Thank you.

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rjcravens's picture
Replies 4
Last reply 9/1/2011 - 8:36pm

My name is Rachel and I am 35 yrs old. I have been married for 13 yrs to a wonderful man named Jerry. We have three blessings...Megan 13, Dawson 12, and Amy 10. I am starting a blog in attempt to keep my sanity and hopefully find answers to some questions and meet others and hear their stories. Jan 2010 I had a smal "pimple" come up on my left upper arm. It wlas the same color as my skin and of no concern to me. My husband kept saying "that thing has been there a while, i think you should have it looked at." Being a nurse, I put it off and figured it will go away. It did not. First part of Feb I went to family doc. He had me use some cream for a couple weeks then took it off and stated it was prob a granulation, no worries. A couple week later i get the call its Melanoma. So i went to surgery had wide excision they traced the lymph node and removed it. PET scan and MRI negative. It came back with no spreading to the lymph nodes but was 4cm.
It was discussed to do nothing or start Interferon. I started the treatment in May IV, then started sub Q in June. It has not been nice to me. As of Monday, I will be reducing the dose in almost half. Here are some of my questions: 1. Did anyone think the Interferon gets easier after a certain point? 2. I am taking cymbalta in the mornings, as well as Ritalin. I take ativan and zofran on days of injections. Is there anything else i should take? And does anyone else have experience with Ritalin for fatigue? 3. When is this feeling of living in fear each day going to pass? I am eager to hear

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