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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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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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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tricialeigh44's picture
Replies 6
Last reply 3/26/2011 - 10:55am

My mom has just got her results from her second round of IL2. Her tumors have again shrunk, so she will be heading back to Roswell Park for round 3 of IL2. I was just wondering from any NED patients, what happens next. After 3 rounds of IL2, do you go back yearly? What happens if the tumors grow again?


It is so hard not to focus on all the what ifs. I should and am eternally grateful that she is an IL2 responder. Her recent CT showed most of her tumors disappeared! This is FANTASTIC news. I will keep praying that the rest of the tumors disappear as well.

I have picked up tonnes of information regarding IL2 from Roswell park. I keep meaning to post it on this bulletin board for all those that are beginning this treatment. This disease is terrifying, so if I can help inform anyone about IL2, I will certainly do my best to pass on our experiences.

Can anyone tell me what happens next????


Thanks so much


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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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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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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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killmel's picture
Replies 4
Last reply 3/25/2011 - 3:09pm
Replies by: ValinMtl, EricNJill, Anonymous

Hi All,


I just got back toMPIP after a long trip. I have gone back & read old post but could not find out anything on Amy Busby & Jill n Eric in Ohio.

Hoping that they are all doing well.



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Janner's picture
Replies 26
Last reply 3/25/2011 - 1:25pm

This is a bit complicated and long.  Father, age 86, had a stage IIA (2.22mm) melanoma removed 5 years ago.  He refused the SNB and didn't want to consider treatment.  The SNB would have been under his right arm and I knew he wouldn't have dealt with any complications well with his dominant arm.  He was still swimming and playing tennis and both would have been compromised with any complications -  so he just did the WLE. 

In the meantime, he has been diagnosed with stage IV prostate cancer and stage IB lung cancer.  He had radiation for the lung cancer which appears curative, to date (2+ years out).  The prostate cancer is in some bones, but is not of major concern at this moment.

He is a vet and is treated at the VA.  Last week, he was at a regular derm appointment to remove some AKs and SCC.  The derm told him he had cancer all throughout his body and it was very serious.  Family confab today.  He had a PET/CT last December but we never got the results.  Turns out, he had two biopsies before Christmas and never told his kids.  I went up to the VA and pulled all his medical records today.  Did some quick reading and it turns out he now has thyroid cancer (been there a long time and slow growing - not a major concern) and a lymph node in his axilla positive for melanoma.  The PET/CT shows no other hot spots so it is possible that the melanoma is still confined to that lymph node and/or basin.

We see the onc in 2 weeks.  But I'm just thinking things through and trying to come up with ideas I think would work for my Dad.   

Do we do nothing?  What happens as the node continues to grow? 

Do we cherry pick the enlarged node and minimize damage in the basin?  Remove obvious melanoma and "watch and wait"?

Do we push for the LND?  I know that wouldn't be the first choice for my Dad.  He really isn't excited for more surgery.  I can see the onc recommending this.

Do we consider radiation to the basin?  Might that slow down growth and give him more time?

I don't see chemo, interferon or any harsh treatment as a valid option.  My Dad is still mentally all there.  It is very possible that melanoma won't be what kills him.  He has plenty of issues.  It's taken 5 years for melanoma to show any visible signs in this lymph node.  So far, not lightning fast spread.

Have I forgotten anything?  Any ideas on what you might do/suggest in this situation?  Not looking for a cure here, just looking at extending life and comfort a bit.  Just want to make sure I haven't forgotten something obvious.



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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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himynameiskevin's picture
Replies 8
Last reply 3/25/2011 - 11:59am

As soon as I finished my visit with the doctors I felt a scratchy throat coming on and by the time my flight landed home here in San Diego I had a full on cold/flu/fever thing going on. It hit me quick and had me pretty down and out for a few days. Must have been the flights, hotels, stress, jet lag, and/or sick hotel shuttle driver. But I'm on the mend now and well enough to update those interested...

So this months scans show that things are still down a bit, not sure of an exact number, maybe around 7%? Again I'm not sure the exact number but I think I'm down to about 12 tumors in the lungs.. or maybe it was 9. I'm not sure. You know there were so many numbers and percentages and comparisons. I get kinda flustered and tongue tied when the doctors come in and I'm trying to remember so many things while doing math and thinking what to ask while listening to what they say... so... that's where I'm at. I do know for sure, that there's still nothing new, my brain is still clear and things are shrinking a tad. So this is good news. Just hope/pray/wish/manifest something similar next month and preferably months to come. We'll see...

Ok, well, I'm going to try and finish off this bug with some tea and a good nights sleep. I'll talk to you all soon. -Kevin

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