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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JustMeInCA's picture
Replies 4
Last reply 12/5/2014 - 6:19am

Dad got the approval today from his oncologist at UCSF to try cannabis oil for pain management. He said he's seen other people do very well with it and that there are no contraindications with his Keytruda treatments.

Next step: off to the dispensary. The doctor says that the note from Dad's PCP on a prescription pad is all we need, as there is no actual "prescription" that can be written for it anyway. (There is some irony there somewhere that we have this legal drug that is completely unregulated.) He just said that no one has ever OD'ed on cannabis but that we'll want to start low and then add more as needed after 30 minutes or so.

Welcome to the Wild West.  

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Here is the transcript for a recent 60 minutes on cancer drug pricing and doctor compensation that I found fascinating.  Maybe you will too.

For those unable to watch the video, here is the transcript of “The Cost of Cancer Drugs” which aired on Oct. 5, 2014.

Cancer is so pervasive that it touches virtually every family in this country. More than one out of three Americans will be diagnosed with some form of it in their lifetime. And as anyone who’s been through it knows, the shock and anxiety of the diagnosis is followed by a second jolt: the high price of cancer drugs.

They are so astronomical that a growing number of patients can’t afford their co-pay, the percentage of their drug bill they have to pay out-of-pocket. This has led to a revolt against the drug companies led by some of the most prominent cancer doctors in the country.

Dr. Leonard Saltz: We’re in a situation where a cancer diagnosis is one of the leading causes of personal bankruptcy.

Dr. Leonard Saltz is chief of gastrointestinal oncology at Memorial Sloan Kettering, one of the nation’s premier cancer centers, and he’s a leading expert on colon cancer.

Lesley Stahl: So, are you saying in effect, that we have to start treating the cost of these drugs almost like a side effect from cancer?

Dr. Leonard Saltz: I think that’s a fair way of looking at it. We’re starting to see the term “financial toxicity” being used in the literature. Individual patients are going into bankruptcy trying to deal with these prices.

“I do worry that people’s fear and anxiety’s are being taken advantage of.”
Lesley Stahl: The general price for a new drug is what?

Dr. Leonard Saltz: They’re priced at well over $100,000 a year.

Lesley Stahl: Wow.

Dr. Leonard Saltz: And remember that many of these drugs, most of them, don’t replace everything else. They get added to it. And if you figure one drug costs $120,000 and the next drug’s not going to cost less, you’re at a quarter-million dollars in drug costs just to get started.

Lesley Stahl: I mean, you’re dealing with people who are desperate.

Dr. Leonard Saltz: I do worry that people’s fear and anxiety are being taken advantage of. And yes, it costs money to develop these drugs, but I do think the price is too high.

The drug companies say it costs over a billion dollars to bring a new drug to market, so the prices reflect the cost of innovation.

The companies do provide financial assistance to some patients, but most people aren’t eligible. So many in the middle class struggle to meet the cost of their co-payments. Sometimes they take half-doses of the drug to save money. Or delay getting their prescriptions refilled.

Dr. Saltz’s battle against the cost of cancer drugs started in 2012 when the FDA approved Zaltrap for treating advanced colon cancer. Saltz compared the clinical trial results of Zaltrap to those of another drug already on the market, Avastin. He says both target the same patient population, work essentially in the same way. And, when given as part of chemotherapy, deliver the identical result: extending median survival by 1.4 months, or 42 days.

Dr. Leonard Saltz: They looked to be about the same. To me, it looked like a Coke and Pepsi sort of thing.

Then Saltz, as head of the hospital’s pharmacy committee, discovered how much it would cost: roughly $11,000 per month, more than twice that of Avastin.

60 MINUTES OVERTIME
THE “EYE POPPING” COST OF CANCER DRUGS
Lesley Stahl: So $5,000 versus $11,000. That’s quite a jump. Did it have fewer side effects? Was it less toxic? Did it have…

Dr. Leonard Saltz: No…

Lesley Stahl: …Something that would have explained this double price?

Dr. Leonard Saltz: If anything, it looked like there might be a little more toxicity in the Zaltrap study.

He contacted Dr. Peter Bach, Sloan Kettering’s in-house expert on cancer drug prices.

Lesley Stahl: So Zaltrap. One day your phone rings and it’s Dr. Saltz. Do you remember what he said?

Dr. Peter Bach: He said, “Peter, I think we’re not going to include a new cancer drug because it costs too much.”

Lesley Stahl: Had you ever heard a line like that before?

Dr. Peter Bach: No. My response was, “I’ll be right down.”

Lesley Stahl: You ran down.

Dr. Peter Bach: I think I took the elevator. But yes, exactly.

Bach determined that since patients would have to take Zaltrap for several months, the price tag for 42 days of extra life would run to nearly $60,000. What they then decided to do was unprecedented: reject a drug just because of its price.

Dr. Peter Bach: We did it for one reason. Because we need to take into account the financial consequences of the decisions that we make for our patients. Patients in Medicare would pay more than $2,000 a month themselves, out-of-pocket, for Zaltrap. And that that was the same as the typical income every month for a patient in Medicare.

Lesley Stahl: The co-pay.

Dr. Peter Bach: Right. 20 percent. Taking money from their children’s inheritance, from the money they’ve saved. We couldn’t in good conscience say, “We’re going to prescribe this more expensive drug.”

“It was a shocking event. Because it was irrefutable evidence that the price was a fiction.”
And then they trumpeted their decision in the New York Times. Blasting what they called “runaway cancer drug prices,” it was a shot across the bow of the pharmaceutical industry and Congress for passing laws that Bach says allow the drug companies to charge whatever they want for cancer medications.

Dr. Peter Bach: Medicare has to pay exactly what the drug company charges. Whatever that number is.

Lesley Stahl: Wait a minute, this is a law?

Dr. Peter Bach: Yes.

Lesley Stahl: And there’s no negotiating whatsoever with Medicare?

Dr. Peter Bach: No.

Another reason drug prices are so expensive is that according to an independent study, the single biggest source of income for private practice oncologists is the commission they make from cancer drugs. They’re the ones who buy them wholesale from the pharmaceutical companies, and sell them retail to their patients. The mark-up for Medicare patients is guaranteed by law: the average in the case of Zaltrap was six percent.

Dr. Leonard Saltz: What that does is create a very substantial incentive to use a more expensive drug, because if you’re getting six percent of $10, that’s nothing. If you’re getting six percent of $10,000 that starts to add up. So now you have a real conflict of interest.

But it all starts with the drug companies setting the price.

Dr. Peter Bach: We have a pricing system for drugs which is completely dictated by the people who are making the drugs.

Lesley Stahl: How do you think they’re deciding the price?

Dr. Peter Bach: It’s corporate chutzpah.

Lesley Stahl: We’ll just raise the price, period.

Dr. Peter Bach: Just a question of how brave they are and how little they want to end up in the New York Times or on 60 Minutes.

That’s because media exposure, he says, works. Right after their editorial was published, the drug’s manufacturer, Sanofi, cut the price of Zaltrap by more than half.

Dr. Peter Bach: It was a shocking event. Because it was irrefutable evidence that the price was a fiction. All of those arguments that we’ve heard for decades, “We have to charge the price we charge. We have to recoup our money. We’re good for society. Trust us. We’ll set the right price.” One op-ed in the New York Times from one hospital and they said, “Oh, okay, we’ll charge a different price.” It was like we were in a Turkish bazaar.

Lesley Stahl: What do you mean?

Dr. Peter Bach: They said, “This carpet is $500″ and you say, “I’ll give you $100.” And the guy says, “Okay.” They set it up to make it highly profitable for doctors to go for Zaltrap instead of Avastin. It was crazy!

But he says it got even crazier when Sanofi explained the way they were changing the price.

Dr. Peter Bach: They lowered it in a way that doctors could get the drug for less. But patients were still paying as if it was high-priced.

Lesley Stahl: Oh, come on.

Dr. Peter Bach: They said to the doctor, “Buy Zaltrap from us for $11,000 and we’ll send you a check for $6,000.” Then you give it to your patient and you get to bill the patient’s insurance company as if it cost $11,000. So it made it extremely profitable for the doctors. They could basically double their money if they use Zaltrap.

“High cancer drug prices are harming patients because either you come up with the money, or you die.”
All this is accepted industry practice. After about six months, once Medicare and private insurers became aware of the doctor’s discount, the price was cut in half for everyone.

John Castellani: The drug companies have to put a price on a medicine that reflects the cost of developing them, which is very expensive and takes a long period of time, and the value that it can provide.

John Castellani is president and CEO of PhRMA, the drug industry’s trade and lobbying group in Washington.

Lesley Stahl: If you are taking a drug that’s no better than another drug already on the market and charging twice as much, and everybody thought the original drug was too much…

John Castellani: We don’t set the prices on what the patient pays. What a patient pays is determined by his or her insurance.

Lesley Stahl: Are you saying that the pharmaceutical company’s not to blame for how much the patient is paying? You’re saying it’s the insurance company?

John Castellani: I’m saying the insurance model makes the medicine seem artificially expensive for the patient.

He’s talking about the high co-pay for cancer drugs. If you’re on Medicare, you pay 20 percent.

Lesley Stahl: Twenty percent of $11,000 a month is a heck of a lot more than 20 percent of $5,000 a month.

John Castellani: But why should it be 20 percent instead of five percent?

Lesley Stahl: Why should it be $11,000 a month?

John Castellani: Because the cost of developing these therapies is so expensive.

Lesley Stahl: Then why did Sanofi cut it in half when they got some bad publicity?

John Castellani: I can’t respond to a specific company.

Sanofi declined our request for an interview, but said in this email that they lowered the price of Zaltrap after listening “to early feedback from the oncology community and … To ensure affordable choices for patients…”

Dr. Hagop Kantarjian: High cancer drug prices are harming patients because either you come up with the money, or you die.

Hagop Kantarjian chairs the department of leukemia at MD Anderson in Houston. Inspired by the doctors at Sloan Kettering, he enlisted 119 of the world’s leading leukemia specialists to co-sign this article about the high price of drugs that don’t just add a few weeks of life, but actually add years, like Gleevec.

It treats CML, one of the most common types of blood cancer that used to be a death sentence, but with Gleevec most patients survive for 10 years or more.

60 MINUTES: SEGMENT EXTRAS
NAT’L ONCOLOGISTS GROUP TACKLES SPIRALING DRUG COSTS
Dr. Hagop Kantarjian: This is probably the best drug we ever developed in cancer.
Lesley Stahl: In all cancers?

Dr. Hagop Kantarjian: So far. And that shows the dilemma, because here you have a drug that makes people live their normal life. But in order to live normally, they are enslaved by the cost of the drug. They have to pay every year.

Lesley Stahl: You have to stay on it. You have to keep taking it.

Dr. Hagop Kantarjian: You have to stay on it indefinitely.

Gleevec is the top selling drug for industry giant Novartis, bringing in more than $4 billion a year in sales. $35 billion since the drug came to market. There are now several other drugs like it. So, you’d think with the competition, the price of Gleevec would have come down.

Dr. Hagop Kantarjian: And yet, the price of the drug tripled from $28,000 a year in 2001 to $92,000 a year in 2012.

“They are making prices unreasonable, unsustainable and, in my opinion, immoral.”
Lesley Stahl: Are you saying that the drug companies are raising the prices on their older drugs.

Dr. Hagop Kantarjian: That’s correct.

Lesley Stahl: Not just the new ones. So you have a new drug that might come out at a $100,000, but they are also saying the old drugs have to come up to that price, too?

Dr. Hagop Kantarjian: Exactly. They are making prices unreasonable, unsustainable and, in my opinion, immoral.

When we asked Novartis why they tripled the price of Gleevec, they told us, “Gleevec has been a life-changing medicine … When setting the prices of our medicines we consider … the benefits they bring to patients … The price of existing treatments and the investments needed to continue to innovate…”

[Dr. Hagop Kantarjian: This is quite an expensive medication.]

Dr. Kantarjian says one thing that has to change is the law that prevents Medicare from negotiating for lower prices.

Dr. Hagop Kantarjian: This is unique to the United States. If you look anywhere in the world, there are negotiations. Either by the government or by different regulatory bodies to regulate the price of the drug. And this is why the prices are 50 percent to 80 percent lower anywhere in the world compared to the United States.

Lesley Stahl: Fifty percent to 80 percent?

Dr. Hagop Kantarjian: Fifty percent to 80 percent.

Lesley Stahl: The same drug?

Dr. Hagop Kantarjian: Same drug. American patients end up paying two to three times more for the same drug compared to Canadians or Europeans or Australians and others.

Lesley Stahl: Now, Novartis, which makes Gleevec, says that the price is fair because this is a miracle drug. It really works.

Dr. Hagop Kantarjian: The only drug that works is a drug that a patient can afford.

The challenge, Dr. Saltz at Sloan Kettering says, is knowing where to draw the line between how long a drug extends life and how much it costs.

Lesley Stahl: Where is that line?

Dr. Leonard Saltz: I don’t know where that line is, but we as a society have been unwilling to discuss this topic and, as a result, the only people that are setting the line are the people that are selling the drugs.

Source: http://www.cbsnews.com/news/the-cost-of-cancer-drugs/

(((c)))

 

Maggie - Stave IV (lung mets unknown primary) since July 2012

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My husband is on Fragmin due to a pulmonary embolism in September. He is scheduled to have stereotactic brain radiation  this week. We are waiting to hear back from anti coagulation specialist as to whether he should withhold or continue Fragmin on day of procedure. Radiation oncologist has weighed in: stay on Fragmin. Anyone else out there with related experience?

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vivian's picture
Replies 17
Last reply 12/3/2014 - 5:26pm

I have a second left lung met two years after having one removed by VATS.  This one seems to be growing quickly but is still small (1 cm at last scan) and causing no issues.  Nothing else lit up on  a recent PET, although one tiny new nodule in the right lung is visible on CT.  The docs all say surgery is the best way to go, and I agree, but I am wondering why go through the surgery when it isn't causing me any problems yet?  Why not wait until I have bothersome symptoms?  My melanoma seems to be "indolent" so far - showing up every couple of years with solitary mets, so only surgery has been needed.  I understand that there is no chance that removing this met will be curative in the long term and eventually some systemic treatment will be needed.  

What do you guys think about just letting this thing go until it is a problem or other things show up?  I feel great right now and hate the thought of making myself and my husband suffer through a procedure that while not horrible, is certainly not pleasant!  I would appreciate any advice...

Lear

 

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sgrain's picture
Replies 12
Last reply 12/2/2014 - 3:31pm

I recently posted my history with melanoma and the drugs I've tried lately, including PD-1.  I only had 3 infusions for a 9 week length of time and then had my PET scan which showed new mets.  It was then that my oncologist said PD-1 had failed and we stopped the treatment.

My husband has done a lot of research since that time and we have seen many articles and graphs that show partial or complete response after approximately 15 weeks.   

I guess my question to any of you that are currently on, or have been on, PD-1, how long did it take before you had a partial or complete response, or how long did it take before your oncologist pulled you off it due to it failing?  My concern is that we didn't give it enough time.  Here are some of the snip-its he found:

“The anticancer mechanism of action is different with checkpoint inhibitors as compared with chemotherapy.  …  As a clinical consequence, antitumor responses that are delayed, as compared with those for chemotherapy or targeted agents, may occur because it may take time for an antitumor immune response to be mobilized and prove effective at killing tumor cells.  ”

“Therefore caution should be taken in abandoning therapy early. In general these delayed responses are not observed in patients with rapidly progressive, symptomatic disease.”

One of the Time to Response charts show many partial/complete responses not happening until well past 15 weeks.  

Delayed responses following initial increase in tumor burden also observed in some patients, indicative of immune-mediated response

Sandy

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yazziemac's picture
Replies 4
Last reply 12/2/2014 - 9:15pm

Hello

My husband, Pete, had a craniotomy on Friday morning at Toronto Western Hospital to attempt to remove a 3 cm tumour in his right frontal lobe. The neurosurgeon told me after the surgery that he was able to remove 99% of the tumour, which is more than he thought would be possible, given the tumour's location next to blood vessels.  That's good news!  There will be follow-up Gamma Knife radiation to the site within the next two weeks to target the remaining cells.  We will meet with our melanoma oncologist  at Princess Margaret in Toronto on Dec. 8 to discuss next steps.  Does anyone have any thoughts that would be helpful for me to hear?

Thanks for this support group,

Yasmin

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sgrain's picture
Replies 13
Last reply 11/30/2014 - 9:25pm

Hi all,

It's been a while since I posted or have read the board but in 1999/2000, I was an avid follower and it was (and is) such a great source of information and support.  In 2000, after 6 cycles of Bio-Chemo (legha protocol), I was declared NED and remained so until Feb 2012 when a lung nodule showed up.  Following surgery, I was again NED for another year, then tumors in both right and left lungs.

I have tried Ipi, Zelboraf, Dab/Mek combo, and most recently, PD-1.  The only treatment that even partially worked was Zelboraf which killed the tumors in my right lung so now I am only dealing with left lung nodules and a couple new ones that popped up in the middle of my chest.

I have an appointment at Mayo Clinic in Rochester, MN on Monday, Dec 1 and it looks like they have a couple of trials available but they are phase 1 which I'm leary of.  The other option that I haven't tried is IL-2 but that scares me.  

A couple questions for you:

1) If any of you have done the high-dose IL-2, how brutal was it and did it work for you (or not)?

2) Are there other trials or treatments that others in a similar situation as me are considering or participating in?

I so appreciate all of your wisdom and support and hope I can contribute more to the board with my experiences.  Thanks again and good luck to all fighters out there!

Sandy Grain

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arthurjedi007's picture
Replies 9
Last reply 12/1/2014 - 12:37pm

I think I know but I would like to ask. Basically for Thanksgiving I made it to my sister's. But for the bathroom I had to go up 6 steps. Fortunately they have hand rails so I fell slowly. On the 6th step my lower spine and left hip lost all feeling and strength so I went down. After a minute I was able to walk ok again it just scared me a lot.

About 6 weeks ago I was doing my couple mile walks just fine. Then all of a sudden my left lower leg felt odd and I hobbled home. I haven't been able to walk right since. When I walk for about a minute the left lower leg starts hurting, I walk more and the pain includes my knee as well, walk more and various spots in my left hip start hurting as well as the left side of my left upper leg, walk more and my entire hip and leg start hurting like crazy and I can only sit down. Also almost constantly just sitting my left lower leg hurts and many times my left hip as well.

So combining all that I assume it must be a tumor pressing on my spinal cord again that is about to make me paralyzed?

I say that because last February the tumor in my t10 vertebrae was according to the med onc doc a hairs breath from making me paralyzed. If it grew a hair in a certain direction that would happen. The surgeon doc said anyone with that much spinal cord damage who received it quickly would already be paralyzed. Also one lift, twist, turn, etc too many I would be paralyzed. They couldn't do surgery so I got 2nd radiation to the t10 in March.

I'm not sure what else could make my lower spine and hip go out like that. Granted the only time I had something similar was way back in October of 2012 when I was washing my hands and had to grab the sink because I couldn't stand for about a minute. Even that back in February I had no clue. Back then my back was a little sore and I couldn't bend very good but that was about it. Now though my back seems ok and I can still bring my feet up to tie my shoes so I can do that bending ok. So I dunno.

I really don't understand this though because they didn't mention anything with my 11/3 pet/ct other than I only had mild growth and no new stuff since 8/13. They did mention on 11/4 they thought the tumor at the end of my tibia in my knee was causing my leg issue and they gave 5mg oxycodone pain pills. They didn't want me to do anything about it though cause they thought I could get into NIH which I couldn't cause by 11/11 I was wheelchair except for walking a little around the house. Still they wanted me to wait untl 11/25 so they could talk about what to do. I was excepting my med onc to have all types of scans lined up and maybe some nerve specialist to see or something. Instead I see his nurse practioner who just says we need to get you walking good again so you can get in one of these trials. I say yes we do and then there's silence like she had no idea how to proceed. So I suggested maybe I should call my radiation doc and she said yes that would be great. So I see him Tuesday at 3. He's the one that kept me from being paralyzed last March. I think I'll just write up all the symptoms so there will be no misunderstandings when they ask me what's wrong.

Artie

 

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gaby's picture
Replies 1
Last reply 11/27/2014 - 1:15pm
Replies by: ltalley
You always gave me their support in difficult times so today I want to share this good news. Today we visited the oncologist with the result of SCAN, and everything is clean !! Thankfully, my husband two years and four months which is NED ago. Also my husband could finish with pegylated interferon tramiento, so now let's try to do a little more normal life.
 
We live an  emotional roller coaster. From diagnosis in June 2012 my husband had 38 years, everything was very difficult, but he's a fighter, and decided to make interferon for two years. He had several questionable PET and suffer much distress but thank God the beast yet to return ....
 
Greetings and thanks for the support.
 
gaby

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rick1981's picture
Replies 4
Last reply 12/1/2014 - 4:33am

Hi all,

After the Stage IV melanoma diagnosis in early June (2 days after our daughter was born), my wife has been put on the BRAF/MEK combo with immediate results: the skin lesions disappeared in days, the first scan in August showed a significant reduction in tumor load and in October the PET scan was fully negative. We had hoped to be on our way to NED or at least to have a long run on the combo.

However, our MD called yesterday to let us know both LDH and plasma (experimental test to identify resistence against the combo) signal disease progress. We'll see him tomorrow and then have a scan early next week.

But it seems like the combo only lasted 5-6 months (high LDH values apparently correlate to a short impact period of the combo) and we're on to immunotherapy.

In principle that's not a bad thing, but it just produced a big dent in my wife's optimism and strength. She was convinced that with the combo, cannabis oil, supplements, yoga etc she would beat this thing against all odd. It's still possibly, but we'll have to move to Plan B and I'll do all I can to bring back her positivity and we'll keep fighting.

Will keep you posted,

Rick

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mwcollins's picture
Replies 3
Last reply 12/4/2014 - 10:53am

I wanted to give all you warriors and caregivers an update on Kevin (stage IV since Feb 2014).  After a scare in August with a clean CT scan, Kevin had his routine PET scan and MRI today.  Both were clear to the doctor and one of his staff members.  A radiologist has to confirm, but according to the doc, Kevin is still NED!  Praise God!!!  He did get the opportunity to speak to one of the team members about a clinical trial that involves Yervoy and a vaccine.  Kevin has decided (with my blessing and the support of all medical staff) to hold onto any ammunition for when he has a high tumor load, or an inoperable tumor.  He feels good now, and is currently healthy and wants to enjoy that.  I see the benefits of being proactive, but support him in his decision. There is always the possibility of taking part in a clinical trial and still have a recurrance.  If that were to happen, I know he'd be extremely frustrated with putting himself through the pain and agony of the side effects of Yervoy...  Hold out until you really need it!  Don't pull the goalie yet.

I wanted to let you all know that NED is a blessing, taking life as a gift is a realization that we have all come to, and bottom line, life is precious.  Enjoy your Thanksgiving all.  Hug your families!  Love unconditionally, laugh hard, cry if you need to.  Support each other and know that we are all in it together!  Love to you all!!!

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ltalley's picture
Replies 1
Last reply 11/27/2014 - 11:48am
Replies by: _Paul_

I just wanted to say I'm thankful for family, friends, and this forum, and for being alive today. I know so many of you are going through terrible and difficult times, but I wanted to say stay strong, love every day, fight hard, and win!! Win for us, win for yourselves, and win for those of the future! May God give you peace, happiness, and endurance, but above all may He give you complete healing in mind, soul, and body. May Every One Have A Wonderfully Blessed Thanksgiving Day with lots of laughs, love, and memorable moments. And promise me no matter how sick you are or bad you feel that you will smile, just smile. Love to all!!! heart

Living Life!smiley

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_Paul_'s picture
Replies 0

My sister is a family Dr. in Ontario, and she was visiting me last week. She suggested that I research palliative care now when I am still not feeling symptoms from the cancer. I thought palliative care was the same as hospice, but she said they were different, with palliative care more about pain management and quality of life.

I groveled around the SCCA website and they had this reference to a study that shows that patients receiving palliative care actually lived longer: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678.

I would love to hear your experience with it.

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