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.

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Acton plans from doctors is going excruciatingly slow - can we translate that to "it's not too serious"?  31 days since biopsy results, matsatic melanoma stage 4.  Nodule in right mid lobe 2 cm and 3-4 cm subcarinal lymph node showed high levels of activity as well after PET scan.  Still waiting on Brain MRI to be done this week.

Back and forth messages to doctors after our first initial visit, surgeon supposed to call today.

Can anyone share success on surgery - he would remove right mid lobe and all lymph nodes, affected or not per PET scan.

Is surgery typically accompanied by medication/ drug therapy as well?

Has anyone chosen NOT to do surgery and just go drug therapy alone?

We have an appt. with melanoma specialist on Thursday for 2nd opinion.  The challenge with the doctors at Scripps, they have been speaking to my husband via phone and he cannot remember a thing that they say!  Of course he is overwhelmed, he has been landed this huge diagnosis.

Should doctors, like any other business, be presenting us with a written plan?? Thank you for any insight - we are having to catch up to a lot of info and what we should be asking.



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Anonymous's picture
Replies 6
Last reply 6/23/2015 - 12:18am
Replies by: Anonymous, arthurjedi007, Bubbles, Patina

Hi Forum,

My mom was diagnosed with stage IV in Oct 2014, lung nodule, liver lesion, and (at the time we were told) “too many brain mets to count”. She underwent a series of complications that first month (before starting any treatment) from numerous brain bleedings, resulting in WBR & 2 craniotomies (both to remove 1 bleeding tumor; completed successfully w/2nd surgery). Nov 2014, she began the Taf/Mek combo.  Over the last 8 months, we’ve been blessed with only good body CT & brain MRI results, showing tumor shrinkage each time, with brain mets down to less than 10 now. Similarly, her LDH has steadily fallen. Early May, she received 1st Opdivo infusion (continued initially on Taf/Mek, after some side effects that resulted in a hospital visit, she’s been on/off Taf for 4 weeks now). LDH was upper 500s 2 weeks ago when she received most recent nivolumab infusion. We have brain MRI & radiation onc follow-up scheduled 2.5 weeks from now.

We have faith she can get through all of this & the good scans have certainly helped keep us strong. That being said, before she started any treatment, we saw how quickly the brain mets can spiral the disease out of control, and these experiences might be haunting us a bit. Everytime she seems slightly confused or spends an entire day sleeping & not eating, we immediately worry somethings amiss in the brain. We’re aware it takes time for nivolumab to reach the brain and that when she’s off the Taf/Mek combo, she’s in a bit of “free fall”. We’re hoping some voices of reason from the forum can shed some light on:

(1) Others with brain mets, your experiences w/Opdivo? what's to be expected, in terms of mental fogginess, fatigue, etc.? did your melanoma oncologist or radiation oncologist have any useful tips or plans of action to help guard the brain during the first few months of nivolumab? or, if they didn’t, what was their rationale for not doing so? we’ve been told that as long as brain MRIs look good, there’s no use for SRS…naturally, our concern then becomes, "well, how quickly can things turn bad again, as long as there are brain mets that havent been zapped? why wait till its broken, to fix it?” are brain met complications something most oncologsists take precaution against when starting patient on opdivo? and if not, why not??  

(2) any insight as to how much of a “ticking bomb” these brain mets might be? we’re all worried that as long as the brain mets are there, they can spontaneously bleed or grow, placing my mom in immediate danger. this fear stems from that fact that before she started treatment, we saw how the brain mets could adversely affect her overnight. perhaps this isn't even there any reason to believe that brain mets don’t develop sudden complications, as long as patient is undergoing some sort of treatment (even first 3 months of immuno)? does anyone have experience with sudden brain problems once they switched from BRAF pills to immuno, regardless of progress made on pills alone? 

(3) any useful markers to be on the lookout for, to get a sense of how things are going in the brain (in between scans)? For example, if LDH is normal, its unlikely body tumors are growing…can the same be reasoned for brain mets? Are there other (maybe even good) reasons for her mental fogginess? Given her steady brain met shrinkage over 9 months, as well as the trend of the LDH, does this place her in a safe spot for opdivo, in less of a free fall? 

Any clarity on all of this would be much appreciated! Would be great to sleep sound tonight OR, at least, start thinking more productively :) 

Thanks so much!! 

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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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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...


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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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Rita and Charles's picture
Replies 10
Last reply 6/22/2015 - 11:46pm
Replies by: Rita and Charles, Squash, DZnDef, Patina, Anonymous, Mom2Addy

Does anyone know if the PET scans work for brain?? We met with the doctor and the brain area "lit up" - he said that was normal so I assumed that the PET doesn't work the same way for brain activity. They have ordered a brain MRI...........but any feedback you have is great for us to learn.


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Anonymous's picture
Replies 6
Last reply 6/24/2015 - 4:38pm
Replies by: yunielth, Anonymous

Anyone out there with stage 1b.  What treatment have u done and how often are u getting checked?  Is ulceration still relevant in stage 1b or is it all about mitosis?

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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 ( 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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Hi everyone

my name is Kelly I'm 29 from highlands in Scotland uk.

im new to this site although not completely new to melanoma but a bit clueless! I had primary removed from my arm in 2013 stage 2a, nodule appeared 2014 beside original site removed and still 2a clear ct scan, may2015 routines an showed 5 small tumours to my liver no lyphnodes involved braff wild,

i started ippy on the 1/6/15 about a week after I started getting horrific bruising with lumps, I have spoke to serval people about this all but one seems to think it is a side affect, my surgeon whom I spoke with last night thinks they are little tumours called subq.

im really just asking all you super warriors if you'd have had subq pop due to ippy or do you think they would have popped up regardless? Also I was wondering what everyone's thoughts were on all the new clinical trials and what has been most successful? 

Much love

kelly xx

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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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Anonymous's picture
Replies 0

Has the scientific team at MRF, or any other the other MRF analogues, reviewed/analyzed/commented on the data presented by NWBio at ASCO this year regarding the DCVax phase 1 trial? Seems like they're honing in on an effective deliver method and interestingly it looks like it could be effectively used prior to PD1 treatment. 


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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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