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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Anonymous's picture
Replies 1
Last reply 6/22/2015 - 9:27pm
Replies by: Anonymous

Has anyone experienced having low oxygen levels and confusion while be treated with Interferon? My Mother was started on interferon three weeks ago, and the Sunday prior to her forth week of the IV infusion phase she became very confused and her oxygen saturations were in the low 80's on room air. They have completed a chest xray and CT scan which all came back negative. She was started on steroids and provided home O2. Anyone else have this experience and if so what was the resolution?

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dentholla's picture
Replies 5
Last reply 6/22/2015 - 8:54pm
Replies by: dentholla, Bubbles, Speedster, Anonymous

My husband begins his trial this coming Tuesday as Stage 3b and it is not clear to me how much information can be made available to us.  For example, can we still ask that his positive sentinal node be tested further or that he be tested for BRAF?  I don't know if any of this has been done already or what his bloodwork looks like for that matter.  Perhaps I'm not being aggressive enough or asking the right questions.  I would appreciate any feedback on this so we are prepared when we go on Tuesday. 

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Replies by: LaurenE, Anonymous, AshleyS, dentholla

My dad is now 4 years in since his diagnosis with melanoma, 1 year since we found mets, which were surgically resected. There are now more mets (of course) on his last scan, so we are taking the step for systemic treatment.

The data for the combined nivolumab and ipilimumab is very compelling, however concerning for toxicity. We have an appointment to meet with an oncologist who is overseeing the expanded access to this and will likely get started in the next few weeks unless we find another option we want to try in the meantime.

I was wondering if anyone had any experience (either yourself or a family member) of actually doing both of these drugs together. I would love to hear about any success stories, as well as the failures, however I am more wondering about the personal experience of having this treatment. I want to help support my dad as much as possible and father's day may be a good time to load him up with blankets, playlists, games, mints what have you for when he is having these infusions - do they give you chills or hot flashes? burn entering your veins? metallic taste in mouth? etc

I would deeply appreciate any insight!

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Bennickliz's picture
Replies 4
Last reply 6/22/2015 - 7:01pm
Replies by: Bennickliz, Anonymous, Ed Williams, LaurenE

Is there anyone out there getting this combo without being on a trial? Can doctors prescribe this together since both drugs are FDA approved?  I've had Ipi with slight growth and tolerated it well and want to get the combo. Thanks for any input.

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affguy's picture
Replies 10
Last reply 6/22/2015 - 6:47pm

My Dad had a large ulcerated melanoma tumor removed from his trunk (ribs below armpit) in the summer of 2012 and began interferon treatments that went through May of 2013 (Three 1-month cycles separated by 2-month breaks).  Everything looked clear until recently, with blood appearing in his urine in November and a rather shocking explosion of new, black moles (47 between early December and January 16).  In looking for the cause of the blood, a CT scan showed spots on his liver a couple of weeks ago.  A PET scan last week showed mets to essentially his entire spine and many other bones too, plus overwhelming involvement of his liver (not large tumors, but too many to operate), and his spleen. 

We're now waiting on insurance approval for the dabrafenib and trametinib combination which will hopefully allow him to start treatment the week after next.  The response rate for that combination looks promising, but I'm wondering how long it takes to know whether it's working or not.  My hope is that it's something that starts working quickly and obviously, such that if he's in the minority for whom it doesn't work, he could get started on any other options in short order.  Of course I'm not sure what further options would exist at that point besides ipilimumab.  He has told us that he has no interest in revisiting the side effects he experienced with his interferon treatments.

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dsfarms13108's picture
Replies 1
Last reply 6/22/2015 - 9:26am
Replies by: Anonymous

has anyone heard of a study regarding the uv lights that nail salons use for gel nails ???????????? i thought i saw it is a huge risk of melanoma just like the tanning beds .I told my mom and sister to beware of this and they want me to prove that its not all hype  .. please give me some feedback if anyone can . thanks -by the way im currently fighting stage 4 melanoma  so it hurts my heart when someone disregards my warnings about tanning and such .

 

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Hi all,

My 75-year-old father was diagnosed with Stage 4 melanoma this week and it has spread to his lungs (one tumor) and brain (a few small lesions).  The doctors have already started him on whole head radiation given the size/number of his brain lesions and then we go to SCCA this coming Wednesday to see Dr. Thompson.  They did not initially test his biopsy for BRAF but, after we pushed, they are going to do so this coming week.  Given that we needed to push, what any other testing (genetic or of his biopsy) should we push for?  We're only a few days into figuring all of this out - and having the diagnosis sink in - but we have already discovered that we need to advocate for him and so I'm wondering what other newer gene/immune therapies to push to have him tested for.  Any advice on this would be appreciated...  Have any of you traveled to the UK or Europe for non-FDA approved drugs and/or clinical trials?  Was your local melanoma specialist willing to refer you?  Any advice on this would be appreciated.

My dad has been an internal medicine physician in a rural area for almost 35 years so we're shutting his practice down which has meant a lot to deal with alongside this diagnosis.  He doesn't have many symptoms - only some vision issues in one eye - so we're shocked by this obviously.

Also, for those who have been treated by ipi or BRAF drugs, how bad are the side effects?  My dad has been tired with the radiation/steriods to reduce the brain lesion swelling to date - but, it's going to get much worse when and if he goes on these drugs, right?

Lastly, if anyone knows of melanoma support groups in western Washington/Seattle-area, any info would be appreciated.  Both of my parents are really struggling right now so it may be nice for them to connect with others going through this.  This diagnosis is devastating and can feel very lonely at times!

So glad to find this resource online and we look forward to learning from all of you...

Carrie

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Aundrea's picture
Replies 13
Last reply 6/21/2015 - 11:29pm

For those of you who are NED survivors, I would just like to see some statistics.  Make it short and sweet.  My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks.  We know he will get one or the other.  So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum! 

List: 

Diagnoses date 

Stage 

How long NED 

What treatment used 

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Ericaloney78's picture
Replies 2
Last reply 6/21/2015 - 11:08am
Replies by: Becky

Hello, my name is Erica and I have posted before about my mom have Oral Mucosal Melanoma.

I want to bring us all together. I have been posting everywhere people with melanoma are to share with them my new FB PAGE. If we all have a meeting place specifically for MM then it's easier... Please come to

https://www.facebook.com/Mucosalmelanomawarriors

thank you so much and see you there!

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Looking for others going through the trail to compare notes.  Who's out there?

For me, after the first three cycles, which would have been both Ipi and Nivo on week 1 (one of which was placebo), then Nivo on week three and Ipi on week four, I had to stop due to elevate liver functions.  That means I would have had one or the other twice before the toxicity caused me to stop.   After six weeks of steroids and the taper off, I received Nivo on week 9 and Ipi on week 10.  Of course when I say Ipi or Nivo, you can read it as "or placebo."    

    

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dmackccr's picture
Replies 15
Last reply 6/20/2015 - 6:42am

28-year-old male, excellent health other than the melanoma that was discovered and removed from shin. SLN had micrometastates. Trying to decide whether or not to have CLND. Main concern is lymphedema. After meeting with medical oncologist and learning of clinical trials, would love to participate in ipi/nevo, but understand it is only available for Stage 3b,c or 4. Unless other nodes are removed and found positive, the stage for now remains 3a.  Does anyone know if it's possible to recieve the treatment outside of a trial?

So many questions ... thanks for any answers.

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Anonymous's picture
Anonymous
Replies 15
Last reply 6/19/2015 - 11:55am

Hello all - I had a large mole on my outer leg removed on Tuesday and just learned it is a melanoma and it was 2.58mm deep.  Dermatologist was very somber and said there is high likelyhood that it has spread to lymph nodes and beyond.  Is recommending a SNB and a PET scan.  I'm dreading a stage IV diagnosis.  Not sure if I should be seeking out hospitals with clinical trials available or if it is too soon.  This is a complete shock and I'm feeling quite unprepared.  Any advice would be welcome.

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Business News: Cancer Drug Prices Disputed --- Memorial Sloan Kettering creates calculator that weighs factors such as side effects, years of life

The Wall Street Journal 

Peter Loftus

19 June 2015

Copyright © 2015, Dow Jones & Company, Inc.

One of the nation's top cancer hospitals is challenging the pharmaceutical industry to adopt a more rational approach to drug pricing.

Memorial Sloan Kettering Cancer Center in New York has created an interactive calculator that compares the cost of more than 50 cancer drugs with what the prices would be if they were tied to factors such as the side effects the drugs produce, and the amount of extra life they give patients. In many cases, the website calculates a price that is lower than the drug's market price.

The project, led by Peter Bach, a physician and director of the hospital's Center for Health Policy and Outcomes, is the latest salvo from doctors and others against the escalating costs of cancer drugs, which increasingly carry price tags of $100,000 or more per patient for a year or a course of treatment. A colleague of Dr. Bach's at Memorial Sloan Kettering recently blasted cancer drug prices as excessive in a speech before thousands of cancer doctors at a meeting in Chicago.

In an interview, Dr. Bach said prices for many new cancer drugs don't reflect their value to doctors and patients. "Right now, manufacturers have total price control, and total control of prices has led to irrational pricing behaviors," he said.

To model what he calls "value based" pricing, Dr. Bach created the "DrugAbacus" research tool, which he hopes will get drug makers, insurers, doctors and patients talking about the factors that should determine price.

"We could have a value-driven system for pricing cancer drugs and probably other drugs, and here's a first draft of how to do it," he said.

The home page of the website (www.drugabacus.org) features images of Merck & Co.'s melanoma treatment, Keytruda, and Novartis AG's Gleevec for a form of leukemia. The site lists their per-bottle price -- $2,500 for Keytruda and $9,000 for Gleevec -- and then asks: "But is that the right price? Should they cost more? Or less?"

The calculator is presented in the form of an abacus with two beads on each wire representing two different prices: the actual price as an immovable bead, and the "abacus" price, which slides up or down based on different factors chosen by the user.

For instance, a user can select what he sees as the monetary value of an additional year of life, ranging from $12,000 to $300,000. Other adjustable components include a "toxicity discount," which lowers the price to reflect the severity of drug side effects; and cost of development, which can move the price higher based on the number of patients in clinical trials.

When the value of a year of life is set at $120,000, with a toxicity discount that subtracts 15% off that level, the abacus price for many of the drugs is lower than the actual market price. A few have significant gaps at those settings, including Amgen Inc.'s Blincyto, approved by the U.S. Food and Drug Administration in December for the treatment of a rare type of leukemia. The market price for Blincyto is listed on Dr. Bach's site as $64,260 a month, but the suggested abacus price is just $12,612.

Dr. Bach said Blincyto should be discounted because many patients must be hospitalized to undergo the start of treatment to allow monitoring for side effects, which adds to the cost of administering the drug.

An Amgen spokeswoman said Blincyto is the first major treatment advance for patients with a rare type of leukemia, who typically live just three to five months after diagnosis.

"The price of Blincyto reflects the significant clinical, economic and humanistic value of the product to patients and the health-care system," the Amgen spokeswoman said. "The price also reflects the complexity of developing, manufacturing and reliably supplying innovative biologic medicines."

Dr. Bach has previously challenged the drug industry on prices. In 2012, Memorial Sloan Kettering decided not to give Sanofi SA's new drug, Zaltrap, to colorectal cancer patients because Dr. Bach and other doctors there believed its efficacy didn't justify its $11,000-per-month price tag. The doctors wrote a newspaper editorial laying out their decision. Sanofi subsequently cut the price by 50% for U.S. oncologists.

Dr. Bach said he got the idea to develop a price calculator in meetings he has had with drug companies, insurers and patients, during which he started writing down various components of what should determine price. Dr. Bach stopped seeing patients about four years ago to focus on research, but says he was also inspired by hearing stories of patients who didn't fill prescriptions because they couldn't afford the out-of-pocket costs, which are linked to the overall price.

Dr. Bach and two workers in his office spent much of the past two months setting up the site, with help from contractors at Real Endpoints, a drug-cost analysis firm, and engineers from software firm NetQuarry. Memorial Sloan Kettering funded the costs, which Dr. Bach estimated were in the "low six figures."

Some drugs fare well on the abacus when set at $120,000 for a year of life, and a 15% toxicity discount. Teva Pharmaceutical Industries Ltd.'s Treanda treatment for blood cancers has an "abacus" price of $21,227 a month, well above the actual price of $7,725. A Teva spokeswoman said the company is pleased to see Treanda's value to patients recognized.

Daniel Goldstein, a medical oncologist at Winship Cancer Institute of Emory University who has researched cancer-drug pricing, said Dr. Bach's site provides a starting point for value-based pricing.

"Currently cancer drug prices are not linked to the benefit they provide," Dr. Goldstein said. "They're currently priced on what the market can bear, which is an unsustainable system."

Patricia Danzon, a professor of health-care management at the Wharton School of the University of Pennsylvania, said assigning a monetary value to an additional year of life and discounting a drug's toxicity should be key components of any pricing system.

But she said she takes issue with the online calculator's inclusion of such factors as a drug's novelty, or its cost of development.

License this article from Dow Jones Reprint Service

Dow Jones & Company, Inc.

 

 

 

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Mom2Addy's picture
Replies 1
Last reply 6/19/2015 - 7:08am
Replies by: Bubbles

My husband had SRS on two brain mets in Jan, surgery to remove 5 subcutaneous nodules and four treatments of Yervoy. His PET scan two weeks ago showed two additional nodules and something in his stomach. He had an endoscopy last Friday and a 24mm nodule removed which we found out today was positive for melanoma. Has anyone else had it in the stomach and if so, what course of treatment did you follow? Yes, we are with a melanoma specialist but won't see him until the week. He's also BRAF positive. Thank you! 

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