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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Rocklove's picture
Replies 5
Last reply 3/27/2011 - 12:31pm

Hi All,

I posted earlier in March I failed IPI and Dr. Weber reccommened I start a round of carboplatinum/taxol and get to MD Anderson. I did the round of carboplatinum 3 weeks ago and have an appt with Dr. Falchook on Tues morning. I hope he has something for me that works.

If anyone is going to be at MD Anderson the next week or two it would be a pleasure to meet up with you. They gave me the blanket two weeks for testing etc. But everyone I have talked to said it does not take that long.

I'll try to keep you posted on what Dr. Falchook reccommends.

Thanks for all the prayers and positive thoughts.

Rocky (Stage IV Liver Mets)

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Hi,

I responded to a survey MRF posted and was selected to be interviewed by a New York Times reporter about my experience with Ipilimumab, and he actually wanted to know about my journey with melanoma (5 years) and other treatments. I dont know how much, if any, of my "story" he will arite up in the New York Times, but just to interview was exciting! The reporter called me at home last night. He said he will send me a copy of the article when he is finished.

I know I dont have much experience with Ipi, just having started it December 1, 2010, but I have had really good success with it. I am hoping it keep on working for me and I start my next round mid-May. 

Just wanted to let people here know.

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi

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liz in Aust's picture
Replies 23
Last reply 3/27/2011 - 9:36am

Hi I am 36 and live in country Australia.

I was diagnosed in 2006 when my baby was 8 weeks old.

Had surgery in May 2006 to remove 3 large tumors from my adbo, along with 3 section of my small and large intestine.( the diesese was in the myestenty of my bowel) had more surgery in 2007 to remove 1 small tumor from beneath my kidney and i had then been clear for 3 years just having blood tests and CT scan every 3 - 6 months.

I had a recent positive scan in June after feeling a bit "off" and now have 2 main tumors in my abdo and many small nodes, they tried to surgically remove these but when they operated thought there was too much diesese to be able to completely remove it all, so did not want to put me though a huge operation and recovery. So they only removed one small easy to get to tumor.

They tested the tumor for the Braf mutation and found it to be negative which was very disappointing.

I have just started DTIC (or dacarbazine) and have finished the first cycle. they will rescan me with a ct after 3 cycles to see how it is going. Currently my belly is quite swollen and tender but generally feel ok.

If the DTIC  does not work they plan to give me Ippiliumabab in Melbourne.

I see a local oncologist in my home town of Albury and Prof Cebon ( Mel specialist in Melbourne). Being a country patient it makes it hard to get info on treatment options etc.

I am feeling quite desperate and wanted some advice on other options people have tried that I could also look at, that maybe I have not considered or been offered, and appreciated any info.

Thanks Liz 

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steelergirl's picture
Replies 2
Last reply 3/27/2011 - 8:51am
Replies by: MichaelFL, Anonymous

 I saw in today's newsaper, about the new drug for metastatic mealnoma called, Yervoy.  Has anybody on here, heard about it before?  Does anybody know how long the drug is given and side effects that goes with it? 

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

Excerpt from a Bloomberg.com 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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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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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

Commentary:
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
 

http://blog.mesotheliomahelp.net/2011/01/mesothelioma-and-cancer-patients-who-received-certain-chemotherapy-drugs-may-be-eligible-for-reimbursement.asp

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.
IMPRESSION:
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

Tricia

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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 Thorocotomy...now "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:

FDA NEWS RELEASE

(Logo: http://photos.prnewswire.com/prnh/20090824/FDALOGO)

For Immediate Release: March 25, 2011

Media Inquiries: Erica Jefferson, 301-796-4988, erica.jefferson@fda.hhs.gov

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

http://www.fda.gov/AboutFDA/CentersOffices/CDER/ucm091745.htm

FDA: Approved Risk Evaluation and Mitigation Strategies (REMS)

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm111350.htm

FDA: Approved Drugs: Questions and Answers

http://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm054420.htm

NCI: Melanoma

http://www.cancer.gov/cancertopics/types/melanoma

CDC: Skin Cancer

http://www.cdc.gov/cancer/skin/

#

 

 

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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 .......................here it is  http://packageinserts.bms.com/pi/pi_yervoy.pdf

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.

 

Cheers,

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.

http://www.heraldsun.com.au/news/more-news/melanoma-sufferer-back-from-brink-of-death/story-fn7x8me2-1226028361999

 

Cheers Kath

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