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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CKasper's picture
Replies 2
Last reply 3/27/2011 - 1:57am
Replies by: CKasper, Charlie S

I first contracted melanoma in 1984, I am currently staged IIIB, had surgery to remove tumor, and lymph nodes, high dose interferon therapy.

Currently in remission.  I have had many other complications:  Fluid in the heart and lungs, constant rash on palms of hands and feet then spreads to the rest of my body, cataracts, swelling of joints, candida in my digestive tract...still here after 27 years...has anyone else had these complications?


C Kasper

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Replies by: jim Breitfeller


Thursday, January 6, 2011BMS denies any wrongdoing. Is this what we have to look forward to with Yervoy (Ipililumab) Melanoma..Jim Breitfeller

BMS denies any wrong doing, but this was not it's first offence and may not be it's last. As the patent waterfall nears close with Plavix, is BMS trying to make up for it's loss of revenue?
Mesothelioma and Cancer Patients Who Received Certain Chemotherapy Drugs May be Eligible for Reimbursement

I am anticipating that BMS will try to inflat the cost of production of Ipilimumab (Yervoy) and try to pass it along to the patients that desperately need it. It is a shame that the drug companies have come down to greed and screw the consumer. BMS needs desperately to clean house again and go through some Ethics training, Big time!!!

I am all for paying a fair price, but not to get gouged to the point that the insurance won't pay and pass the copay onto the patients. It is not right.

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Anonymous's picture
Replies 6
Last reply 3/27/2011 - 8:41pm

I had some soft tissue removed from my left groin on 2/23/11 because I had discovered a lump. It came back melanoma. No sight has been found. I had a pet scan, ct scans of my abdomen, pelvis, brain and chest done 2 weeks ago. No cancer showed up anywhere. My doctor wants to do a  superficial dissection of my lymph nodes. Just wondering if anyone of these cicumstances and a normal practice?

I Love Jesus

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Anonymous's picture
Replies 4
Last reply 3/27/2011 - 2:40pm
Replies by: Anonymous, CKasper, lhaley, EmilyandMike

Hi All,

For what it is worth, I contacted my Blue Shield of CA (spoke to Manager over Benefits) regarding coverage to pay for IPI. I was told that the fact FDA approved IPI there was no guarantee the Blue Shield would pay for the drug. Patients would have to get a pre-service authoriztion which entails reviewing patients history  then Blue Shield would make a decision whether or not to pay for the drug. 

Well, the review of patient's history is a reasonable process to determine coverage on IPI. But then I was told that IPI is so new, that the decision to pay for IPI was very low because the drug was so NEW & the drug is considered experimental/investigatory at this stage...not enough patients took the drug on the clinical trials

For those now on the drug under compassionate use,your chances are better to get payment for IPI because you are in the middle of treatment. For those, hoping to start IPI, it will be an up hill battle with Blue Shield.

I asked if IPI covered under Medicare would that make a difference that Blue Shield would pay for IPI. The manager told me "NO". For those not  covered under Medicare, our chances of getting IPI paid for by insurance could be problematic.

I read another post on MPIP that said, maybe we were better off having IPI under compassionate use because now it is up to insurance companier whether or not to pay for IPI. I think that is a worse situation than trying to get IPI under compassionate use. Now our fate is up to the insurance companies. Life is not easy.

Thanks for taking the time toreadmy post


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Bristol-Myers To Charge $120,000 For Standard Yervoy Regimen
Mar 25, 2011 3:22 PM EDT

Bristol-Myers Squibb Co. (BMY) plans to charge about $120,000 for a standard regimen of its newly approved skin-cancer drug Yervoy, the company said Friday.

The drug, which was approved by U.S. regulators Friday to treat advanced melanoma, is to be given in four infusions over three months. Bristol will charge $30,000 per infusion, spokeswoman Jennifer Fron Mauer told Dow Jones Newswires. Prices may vary because the dosage is dependent upon the weight of the patient.

The price exceeds the estimates of several analysts, but the company is defending the cost based on clinical data showing the drug could extend survival.

"Bristol-Myers takes great care to price medicines for the value they bring patients and the innovation they represent," Mauer said. "And we believe Yervoy is appropriately priced based on these factors. It's the first medicine to significantly extend the lives of patients with one of the most deadly forms of skin cancer."

The New York company has a financial assistance program to provide the drug to eligible uninsured patients, and to assist with co-pays for insured patients. Mauer said Bristol has doubled the household income limit for eligibility for uninsured patients to $150,000 from $75,000.

Bristol shares jumped 5.5% to $27.90 Friday afternoon.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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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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