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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bill58's picture
Replies 17
Last reply 9/12/2010 - 9:19pm

I just got back from my Pet scan.  Not so good news.  cryingI went from stage IIIC to stage IV.  The scans showed the mel has spread to my spine.  That does not sound like a good thing.  I have previously tested positive for the B-RAF mutation so my Oncologist is signing me up for the BRAF trial.  smileyHopefully that will start in a few weeks and will help shrink this beast.  Gee, I was just starting to feel better after completing my radiation treatment on 8/31.wink

Any thoughts and prayers would be welcome at this time.   Add another stage IV warrior to the list.  Hoped I would not join that list, but oh well, what can you do.  Mel is going to do what it wants, but I am working to kick his butt as best i can.  Time for a little more crying before I get on with my life.

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

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cubsgirl21's picture
Replies 15
Last reply 10/7/2010 - 1:26pm

I know this board is more geared toward later staged melanoma patients, but I'm still really scared for my fiancee. He's 35 and had a mole removed and it tested positive for melanoma stage ll. He's scheduled for surgery in a few weeks at U of M in Ann Arbor. I'm just wondering what to expect? He has a consultation at 1 and then surgery at 2. How long does the surgery last? I expected him to have more tests done before they start removing any skin, but i'm not sure what they're going to do at the consultation. If anyone has any advice for us, let me know. I'm really scared because we have a 2 year old daughter and I want my fiancee(her father) to watch her grow up and graduate school, etc. How long is Chris (the fiancee) going to live after he gets the cancer removed?


-Very Worried

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Anonymous's picture
Replies 4
Last reply 9/10/2010 - 11:52pm
Replies by: KatyWI, Anonymous, Sharyn, jag

Can anyone explain what this means - " There is new focal uptake within each ovary. This is likely physiologic."

and - " There is an ill-defined non hypermatabolic nodule/infiltrate in the right middle lobe. This is an area where previously there was a linear atelectasis." (Follow-up is recommended)




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killmel's picture
Replies 8
Last reply 9/11/2010 - 8:57pm

Hi Everyone


I just had my MRI brain scan & PET/CT scans. I consider the results to be very good. No organ involvement, no brain mets.....Just still have 2 node: .4mm &.6mm in my left thigh.

My primary was in my foot 2005, 1st intransit in thigh removed 9/2009, 2nd intransit in thigh removed 5/2010.

I am considering Rouche BRAF. I am  Not happy about Braf because the response might not be long term & might have to continue to take the pill ongoing with no end point. Also, considering IPI.  IPI scares me because of the potential severe long term effect, but at least there is an end point to the treatment.

Last but not least, I can watch & wait, but that will not cure my cancer, Stage 3c

My preferance would be to do IPI but reading all the post regarding the side effects for IPI scare me. I am very active person & I am afraid my tumors might spread or grow before IPI kicks in (I onlyhave a  .4 &.6mm in left thigh, afraid IPI will spread tumors to organs) or that I might get one of severe side effects.

Has anyone done IPI with minimum side effects?????Need some words of encouragement. Anyone having long term response with Braf??

I need to decide to do "systemic treatment or "wait & watch". I would sincerely appreciate any opinions or feedback, recommendations.

Thank you for taking the time to read my post and replying.


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Jerry from Cape Cod's picture
Replies 7
Last reply 9/11/2010 - 9:40am

Promising Treatment for Metastatic Melanoma 'Fast Tracked' by FDA

Sep 9, 2010 12:34:00 (ET)

HACKENSACK, N.J., Sept 09, 2010 /PRNewswire via COMTEX/ -- Researchers from the John Theurer Cancer Center at Hackensack University Medical Center played an important role in a study that led to the Food & Drug Administration's (FDA) recent fast tracking of ipilimumab, a promising treatment for metastatic melanoma. The FDA based its decision largely on the results of a pivotal study published in the New England Journal of Medicine on August 19, 2010 - the same day the agency accepted Bristol-Myers Squibb's application for the drug's approval and granted the application priority review status.

Ipilimumab is the first drug shown in randomized, placebo-controlled trials to improve survival in stage IV melanoma.

"This study, and the FDA's decision, provides new hope for people with this devastating cancer," said Andrew L. Pecora, M.D., F.A.C.P., C.P.E., Chairman and Executive Administrative Director, John Theurer Cancer Center, who led the study at the John Theurer Cancer Center. "We are proud to have played a role in helping move another promising cancer treatment closer to market."

The incidence of metastatic melanoma has increased over the last three decades, and the death rate continues to climb faster than that of most other cancers. According to the American Cancer Society, there were approximately 68,000 new cases of melanoma in the United States in 2009, and 8,700 melanoma-related deaths. Melanoma accounts for about three percent of all skin cancers, but 80 percent of skin cancer deaths. Melanoma is difficult to treat once it has spread beyond the skin to other parts of the body (metastasized). Very few treatment options exist for people with metastatic melanoma.

In this phase III study, researchers randomly assigned patients to one of three treatment groups: those receiving ipilimumab plus an inactive (placebo) version of gp 100, a cancer vaccine; those receiving ipilimumab plus gp 100; and those receiving gp 100 plus ipilimumab placebo. The treatments were administered once every three weeks, for a total of four treatments. The study was double blinded: neither the researchers nor the patients knew which medications the patients were being given.

To participate in the study, patients must have had stage III or IV (metastatic) melanoma, and must have been previously treated unsuccessfully with another cancer drug. They must also have had a life expectancy of at least four months. 676 patients participated in the study at 125 cancer centers.

Those who received ipilimumab, both by itself and with gp 100, lived a median of about 10 months, while those who received only gp 100 lived about 6.4 months. After two years, approximately 23 percent of those who got ipilimumab were alive, while 14 percent of those who did not receive this drug survived. Ten to 15 percent of those who received ipilimumab suffered attacks on their bodies' immune systems (autoimmune reactions), and seven of the 540 patients who got this drug died from these attacks. Most adverse events suffered by study participants, however, were reversible with treatment.

A monoclonal antibody, ipilimumab activates the body's immune system to fight cancer by blocking a protein called CTLA-4. CTLA-4 is a molecule on T-cells, white blood cells that play a critical role in regulating immune responses. CTLA-4 suppresses the immune system's response to disease, so blocking its activity stimulates the immune system to fight the melanoma.

The FDA grants priority review status to drugs that offer major advances in treatment, or that provide treatment where no adequate therapy exists. The projected FDA action date for the ipilimumab application is December 25, 2010.




Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Shelby - MRF's picture
Replies 2
Last reply 9/12/2010 - 9:27am
Replies by: bri11iance, MaryD

Hello!  I just wanted to let everyone know that we have added some great information to our website today.  It is a summary of the June 2010 ASCO (American Society for Clinical Oncology) meeting.  This is a VERY TECHNICAL summary of the various clinical trials, medications, and information presented at the conference.  It is only meant for you to be informed of the latest and greatest in the melanoma field.  Here is the link, or you can find it under Patient Info and Resources, Clinical Trials. 

We hope you enjoy this new material and most of all, we hope you learn something from it!  Also, keep an eye out on the bulletin board about us updating other areas in our About Melanoma and Patient Info & Resources sections.  We may ask for feedback and ideas from you, our wonderful online community!  Have a great day!

Shelby - MRF

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Sherron's picture
Replies 1
Last reply 9/9/2010 - 4:34pm
Replies by: Linda J

Jim has a lump under the skin in his right breast/chest area.  It is causing him a little discomfort and it is itching?  What does the itching mean?

He has about 5 other places (lumps)...some get big, ache a bit, and then get smaller...What does all this mean?

Thanks for any responses!

Take Care,

Sherron, wife to Jim

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Sharyn's picture
Replies 1
Last reply 9/9/2010 - 6:28am
Replies by: Linda/Kentucky

Hi everyone,

First of all, I've recovered well from the mastectomy. Stitches and staples came out last Thurs, and the drain came out on Sat. I'm still in bandages, but that's no big deal. I'm out and about as usual, going up to the cabin on weekends, and riding the quad. I have to wait a few more weeks for my prosthetic breast, but in the meantime, I have an insert for my bra, compliments of my friend Linda at the Home Health Care store. I asked her if she had anything better than the 4 pairs of socks I had stuffed in my bra, so she fixed me up. LOL!! 

Anyway, all my plans are in place for the Ipilimumab treatment. Jim and I are heading to Montreal on Monday evening (13th). I have bloodwork, EKG, CT scan and appointment with Dr Mihalcioiu on Tues, Orientation for treatment on Wed morning, then we head home that evening. 

Back up again for the actual treatment on the 23rd -- fly up on the 22nd, treatment on the 23rd, then home that evening. The treatment is given via IV for 90 minutes. I have to go back every 3 weeks for 12 weeks, then we stop for scans and see how I'm responding, and go from there -- either another 12 week run, or maintenance of one treatment every 3 months.

No need to respond. Just wanted to update you. BTW, our vacation plans fell by the wayside. Things got too busy at work for Jim, so all he can take off are the few days he's in Montreal with me. Bummer! :>(



Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Linda J's picture
Replies 2
Last reply 9/10/2010 - 3:11pm
Replies by: bill58

It is only day three and I already have lots of inflammation from the radiation.  Because they are doing radiation first before surgery, I already had lots of swollenness around the tumor on my butt.  But now that the radiation has started, the groin area has flared up and it is only day three.  What is going on with my body?  Am I going to be in crazy inflammed pain by the end of the 5 weeks?  I wonder if my lymph system is backed up because of the exisiting cancer and is having a harder time now with the radiation.  I'm hoping the swelling goes down because the whole purpose of the radiation first is to lessen the surface area that they will have to cut out.  As it stands now, if they cut out all the red, I would be losing an entire butt-cheek!!!!

Any thoughts?

Linda J

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Mom of 3's picture
Replies 3
Last reply 9/8/2010 - 8:03pm
Replies by: msue5, washoegal, Jackie W

I was recently diagnosed with Clark's Stage IV melanoma.  I went n for just a check up and chose to have a mole removed because it was ugly.  The doc said it didn't look suspicious, but he would send it off anyway.  Low and behold, it came back melanoma.  I have had a chest x-ray done and blood work and everything came back normal.  I am going to UVA Cancer center because they said my margins weren't clear that there was still some situ left and that they would also do a mapping and check my sentinole node.  I am just wondering if anyone else has had similar.  My mole was 1.5 mm and was not ulcerated and also did not regress after removal.  Anyone have any idea what is going to happen next and if some of all of this news is good?  I am only 31 and have three very small children and am scared to death. 

Thanks for anyone who replies!



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NancyGM's picture
Replies 5
Last reply 9/8/2010 - 5:17pm
Replies by: Vermont_Donna, NancyGM, washoegal, Anonymous

I have been on Social Security since 2007. My re-evaluation came up a few months ago. I have been working again(part time) for the last year and still recieving disability, medicare and medicaid. I just recieved notice my benefits will cease. Anyone run into this? I was under the understanding that stage IV is considered a condition that makes one eligible- even if one has been NED for an amount of time. I have no insurance and need my medicare to have check ups and scans. Any advice for appeal process? Thanks


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For those who don't know our story, Eric is Stage 4 with innumerable tumors in his right leg as well as tumors in his lymph nodes.  He has sub-cutaneous tumors and vascular skin tumors.  He has done High Dose Interferon, Carboplatin, Abraxane, and Avastin, High Dose IL-2, and a dendric cell vaccine.  His cancer progressed all through each of those treatments.  Now he is in between treatment and waiting to begin a Intralymphatic Vaccine treatment on September 20th. 

Eric is so discouraged.  We can see changes in his leg daily.  His vacular tumors are growing so fast and the sub-q tumors and putting pressure on his nerves and in the muscle.  He is been in treatment since February, 2009 and is growing very discouraged.  He wants to call it quits and it scares the hell out of me.  He is in so much pain every day.

Is it selfish of me to talk him out of stopping the treatments?  I just don't know what to do.  I don't want him to give up because I think there may be something out there that will help him and I think it's hopeful that it hasn't spread outside his leg or lymph nodes.

I need advice.  Thank you.  Jill

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Shelly in Switzerland's picture
Replies 7
Last reply 9/7/2010 - 7:45pm

I have been on the Roche B-raf clinical trial now for 12 weeks and yesterday I had scans showing that the tumors were still shrinking!  Yahoo! and Thank you God!    Strange side effects but nothing I can't live with.  My tumors on in the pleura and inoperable to this is awesome news. 

Shelly in SW

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Nebr78's picture
Replies 5
Last reply 9/7/2010 - 4:32pm

I have Melanoma stage 4 , male, 78, heart disease.  I have had my limit of Temodar.  Took a CT scan and lab reported nothing growing. I asked about a particular lymph node and they couldn't answer anything about it.  Dr. contacted lab again and now they said it had grown 30%.  Will never use that lab again.  I have been sitting here for about 2 months and no one is doing anything.  I have changed Dr. once and will not again.  I will not spend my estate searching for help.  I am going for one more Dr. visit and if they have no plan, I will just probably quit going back.  I have said it before and will say it again, Cancer is just too big a business to try to cure someone.  They just seem to not want to treat older patients.  Not much pain, I have lump in front of ear, lymph node by armpit size of golf ball almost. Don't know what the spots in lung and spine are doing.   I take pain pills when pain comes.  I really don't know what is going to happen from now on with no treatment.

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