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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steelergirl's picture
Replies 2
Last reply 3/26/2011 - 8:45pm
Replies by: steelergirl, Fen

 I saw the surgeon this afternoon.  I will have lymph nodes removed from my left pelvic area and from under my left arm. He is going to coordinate with the GYN so that this surgery can happen at the same time as the LEEP procedure I am going to have.  I will know Monday afternoon when they will take place.

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Adriene's picture
Replies 17
Last reply 4/1/2011 - 6:39am

Hi everyone! I just like to update here and there. I was diagnosed 11 years ago with stage III nodular melanoma. I had a positive node in my groin, had lymph node dissection followed with 4 four months of biochemo. Darkest days of my life, but I'm here and so grateful. During that time I
became MPIP obsessed. I made and lost wonderful friends. Don't lose hope, keep fighting! God bless all of you.

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Charlie S's picture
Replies 2
Last reply 3/25/2011 - 7:17pm
Replies by: Ranisa, EmilyandMike

It is good news that IPI was approved by the FDA as another tool for  some melanoma patients.  For those of you that want the factual, nitty-gritty, flyspeck print from manufacturer written insert it is

There will be, in the ensuing days, much trumpet blaring, hand wringing and chest beating about Yervoy, and much of it will be sensational and lacking factual details, so I would encourage anyone contemplating this drug to read the prescribing information FIRST before racing to the Cancer Clinic of your choice shouting "I want IPI".

At 30k per infusion through a 4 infusion protocol, it is indeed pricey. But on balance,  my Intron drug alone, sans the 30 day induction, sans the hospital costs of clinical visits, scans and mitigation of side effects, cost 154K for 48 weeks, and my high dose IL-2 was 8k per infusion, sans the "installation" costs while in ICU, the mitigation of side effects, scans and all that other jazz.  According to BMS, they have raised their patient assistance program to a maximum annual income of 150-175K for uninsured or co-pay assistance for users of Yervoy.  The drug alone will be in the range of 120K.

That means that with clinical pre-screening of lab work, scans ,and  follow up, the actual true cost is probably more around the 175K-200K range.

As far as insurance approval, I have  a Case Manger with my now 11 year health insurance provider (by the way, I encourage patients with chronic, acute and major health problems to call your insurance company and request a Case Manager).............Anyway, my Case Manager and I have had conversations about the "treatment approval" for IPI and they have preliminary plans for approval ONLY with in-network providers who have been in the clinical trial process.  This is due mainly to the adverse reactions associated with IPI and they are not going to let rookies administer this drug.

Also in the conversation is the "for patients who have unresectable disease or who failed conventional treatments"...........that leaves a huge amount of gray area for discussion and consideration from the insurance company,;  Is it truly unresectable and  what is considered a failure?  Also, insofar as it has a 15% to date response rate and about a  four month stated life extension, to what end is it viable in the general population?

I have all ready made my own decision relative to Yervoy and am neither pro nor con about the drug, though I do welcome it's availability and it does prove that Melanoma is finally on the cancer radar of treatment development and I personally know several people that it has been the silver bullet so far, , but, as always encourage patients to work the problem and not be swayed by the "game changer, seismic shift" sensational headlines that are sure to follow,  but juuuuuuuuuuuuuuuuust keep sledding, do your homework, get the facts as best you can, ask questions, and make your own INFORMED decisions.



Charlie S

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Hi All

I have not been here for a while.  I am Stage IIIB nearly 6 years surviver.   These stories give use all hope.

Melanoma sufferer back from the brink.


Cheers Kath

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Reporters have been busy covering today’s news about the FDA decision to approve the melanoma drug Yervoy.  See a round-up of coverage here – Most stories included input from the MRF’s Tim Turnham and the AP and New York Times stories included the experiences of patients on the MPIP bulletin board.  Special thanks to all of you on MPIP who were willing to share your stories! 

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Jerry from Cape Cod's picture
Replies 12
Last reply 3/27/2011 - 9:46pm

No freakin' evidence of Melanoma. NED or whatever it's all good.

The lower left lobectomy was a complete success.  The pathology is better than we had ever hoped for.  As we suspected the only need for the lobectomy was the damge caused to the airway by the tumor location.  There was evidence of necrosis and within a few months the tumor would have been gone, but their was also pneumonias collecting in the lower lobe and a swollen lymph node was putting pressure on the upper lobe.

After surgery my blood oxygen maintained at or near 100%. 

I'm at home a bit tired but Oh so Happy. 

Bonnie Lea... it's time to DANCE.

Jerry from Cape Cod

Stage IV - Ipi "Brain" Trial week 111.  That's 2 years, 7 weeks.

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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mom3girlsFL's picture
Replies 6
Last reply 9/27/2011 - 5:21am

Silly question?

Stopped  self inj interferon back in Aug/Sept 2010 due to recurrence.  NEVER had issues with my teeth...until last week.  I was sneaking a bite of my  daughters cereal and BAM! a piece of my last upper molar came off!  Hmmm....

Did it spite me b/c I was sneaking a bite or could it be interferon related after 6 mths?  Or...maybe I'm just getting old - ha!ha!  Just curious.  I do have a dental appt on Monday morning - just ANOTHER doctor to add to the list!

Thanks for any help!


PS - last dental appt was 2 yrs ago (was a little busy w/ mel since then), but had gone regularly.

Do not fear tomorrow, God is already there.

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ValinMtl's picture
Replies 7
Last reply 3/26/2011 - 12:33pm

Well back from Florida after enjoying the good weather, and, of course, where I suffered from scananxiety, nothing is easy.  In November, after completing round 1 with ipi, my CT scan had shown a growth in my left groin...WHATT??   Anyways, doctors believed the beast had metasticized there but thanks to suggestions (thanks fellow ipi warriors) I'm thinking might that lymph node was reacting, I have tried to stay calm. So after completing the first round of 4 infusions, my cutaneous lesions were drying up and disappearing GREAT since I had over 100 now very few but during the past few months, I saw numerous sub-qs coming up, rather like boils on my right left.  Here's CT scan report and PET concurred.

The lung bases appear unremarkable.
The liver, gallbladder, bile ducts, adrenals, kidneys, pancreas, and spleen are unremarkable.
No abnormality is noted in the bowel. No ascites. Unchanged post-operative scar in the right inguinal region. A right external iliacnode previously measuring 9 mm short axis, today measures 9 mm short axis. There has been interval increase in size of a left inguinal node which previously measured 2.6 x 3.0 cm. Today this measures 4.3 x 6.1 cm. No other enlarged abdominal or pelvic nodes are appreciated.
No destructive lesion in the bones of the abdomen.
Significant interval increase in size of a left inguinal lymph node, as described above. Otherwise no change. 

So happy no observation in my organs, good reason to celebrate. The Pet scan showed a lot of activity in right leg, they now think it might possibly be good activity (but, of course they are not sure) and perhaps the left groin is reacting as well (but it also might be bad news)...short of a biopsy they can't tell.  They won't remove any lymph nodes in left since my my melanoma is systemic and needs to be solved via drugs rather than surgery so they are leaving it.  Well anyways all this news, enabled me to re-apply for 2nd round.  I am still hoping that left groin problem is a swollen lymph node or, at the very least, the ipi will attack it.

Thanks to all the support of fellow ipi warriors especially, Jerry, Jim M, Jim B and Jim in Denver, and Donna.  Sharyn, I'm hoping you'll be joining me soon, I gave Michele a big smile for you when I had my first infusion.

Here's how I feel:

Round 1 :  Val 1  Mel 0 (down for a few counts)

AND for Round 2 what I want : Val 2  Mel 0 (down forever)

Val -Stage IV

off to bed again..rather tired this time around

Live Laugh Love Nothing is worth more than this day!

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Anonymous's picture
Replies 29
Last reply 3/27/2011 - 6:55am

Excerpt from a article regarding the approval of ipi todayi....

"The Food and Drug Administration cleared the medicine for patients with widely spread melanoma, the agency said today in a statement. The approval isn’t limited to patients who failed prior treatment, Bristol-Myers spokeswoman Tracy Furey said in a telephone interview today. Yervoy will cost $30,000 a dose, or $120,000 for a four-dose course of treatment, Furey said. "

$120K - I hope the insurance companies will foot this......

Luke 1:37

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Tim--MRF's picture
Replies 5
Last reply 3/25/2011 - 7:40pm
Replies by: Jim M., MichaelFL, MaryD, KatyWI, Anonymous

The FDA just announced that they have approved Yervoy "ipi" for unresectable and metastatic melanoma.  This is the first time a drug has been approved for melanoma in 13 years, so great news!

Here's the announcement:



For Immediate Release: March 25, 2011

Media Inquiries: Erica Jefferson, 301-796-4988,

Consumer Inquiries: 888-INFO-FDA

FDA approves new treatment for a type of late-stage skin cancer

Melanoma patients lived longer with treatment

The U.S. Food and Drug Administration today approved Yervoy (ipilimumab) to treat patients with late-stage (metastatic) melanoma, the most dangerous type of skin cancer.

Melanoma is the leading cause of death from skin disease. An estimated 68,130 new cases of melanoma were diagnosed in the United States during 2010 and about 8,700 people died from the disease, according to the National Cancer Institute.

"Late-stage melanoma is devastating, with very few treatment options for patients, none of which previously prolonged a patient's life," said Richard Pazdur, M.D., director of the Office of Oncology Drug Products in the FDA's Center for Drug Evaluation and Research. "Yervoy is the first therapy approved by the FDA to clearly demonstrate that patients with metastatic melanoma live longer by taking this treatment."

Yervoy is a monoclonal antibody that blocks a molecule known as cytotoxic T-lymphocyte antigen or CTLA-4. CTLA-4 may play a role in slowing down or turning off the body's immune system, affecting its ability to fight off cancerous cells. Yervoy may work by allowing the body's immune system to recognize, target, and attack cells in melanoma tumors. The drug is administered intravenously.

Yervoy's safety and effectiveness were established in a single international study of 676 patients with melanoma. All patients in the study had stopped responding to other FDA-approved or commonly used treatments for melanoma. In addition, participants had disease that had spread or that could not be surgically removed.

The study was designed to measure overall survival, the length of time from when this treatment started until a patient's death. The randomly assigned patients received Yervoy plus an experimental tumor vaccine called gp100, Yervoy alone, or the vaccine alone.

Those who received the combination of Yervoy plus the vaccine or Yervoy alone lived an average of about 10 months, while those who received only the experimental vaccine lived an average of 6.5 months.

Common side effects that can result from autoimmune reactions associated with Yervoy use include fatigue, diarrhea, skin rash, endocrine deficiencies (gland or hormone), and inflammation of the intestines (colitis). Severe to fatal autoimmune reactions were seen in 12.9 percent of patients treated with Yervoy.When severe side effects occurred, Yervoy was stopped and corticosteroid treatment was started. Not all patients responded to this treatment. Patients who did respond in some cases did not see any improvement for several weeks.

Due to the unusual and severe side effects associated with Yervoy, the therapy is being approved with a Risk Evaluation and Mitigation Strategy to inform health care professionals about these serious risks. A medication guide will also be provided to patients to inform them about the therapy's potential side effects.

Yervoy is marketed by New York City-based Bristol-Myers Squibb.

For more information:

FDA: Office of Oncology Drug Products

FDA: Approved Risk Evaluation and Mitigation Strategies (REMS)

FDA: Approved Drugs: Questions and Answers

NCI: Melanoma

CDC: Skin Cancer




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Replies by: EmilyandMike, Tim--MRF

I think it just happened so maybe Tim or MRF can confirm this?

Our experience with melanoma:

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Hi All,

As we all anticipate that Ipi (Yervoy) will be approved by the FDA with days, perhaps even today, does anyone have a opinion as to how long insurance companies take to determine if the new approved FDA drug will be a drug that the insurance company will pay for.

I am not on IPI now, but I am concerned, if my doctor prescribes IPI, how long it will take for my insurance co, Blue Shield, to determine if it is a drug that will be covered under PPO benefits?

Thanks for your reply.


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dwhistonb's picture
Replies 6
Last reply 3/25/2011 - 4:45am

It appears that my family has joined the melanoma club.  The club no one wants to belong to!  My father had a spot taken off of his leg last month.  DIagnosed as melanoma.  Had surgery last week to remove the area and take the firs 3 lymph nodes from his groin area.  We just got the results of the biopsies of the lymph nodes - the melanoma has spread.  NOW where do we go from here?  Of course me being the organized one in the family started researching this afternoon (about an hour after speaking with me Dad) and came across this website and group. I am sure all of you know what the beginning felt like so I am hoping that through this group I can obtain information much quicker; especially since you have all been there before in one capacity or another.  Help??

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Angela C's picture
Replies 1
Last reply 3/24/2011 - 11:51pm
Replies by: FormerCaregiver

Hi everyone.

 I have been fighting melanoma since January of 2007 and most recently became Stage IV in November. I did one cycle of IL2 and had scans on Tuesday. I had a mixed response. Some spots stable, a couple shrank, and one spot doubled in size. So, no more IL2 for me.

Now I have to find a clinical trial. I have to say that the whole process is frustrating having to do all of the research, make the phone calls, etc. It just seems to me that our doctors should be more involved in this process and helping us to find the right trial. But, I guess so many things are still so early in trials that it is tough for even the doctors to make a strong recommendation. Ugh.

But, anyway, I am currently looking into either the MDX1106 trial or the Ipi/GMCSF trial. I was originally looking into the Ipi/MDX1106 trial but was told by Sloan Kettering that a hold has been put on that trial.

MDX1106 is my first choice, but I'm having some difficulty getting into that one. I have a pathology reports from five years ago that says a spot in my lung "favors sarcoidosis." I have never been diagnosed with sarcoidosis, been treated for it, or had issues with these spots. I've even had one of my doctors tell me that I never had it and if I did, "It was the smallest case of sarcoidosis in the world." However, it is listed on my records and sarcoidosis is an exclusion criteria. So, I'm working on getting notes from the doctor that told me I never had it and that MIGHT help to get me into this trial. So frustrating!!

If that doesn't pan out, then my next choice is the Ipi/GMCSF trial.

So, are any of you out there on either of these trials? What kind of side effects have you had? Are you showing success with the treatments?

Thanks for your replies!!


Be kind, for everyone is fighting a great battle. -Plato

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