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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HelperDaughter's picture
Replies 10
Last reply 11/21/2011 - 8:50pm

Hi everyone,

My mom was diagnosed with Stage IV melanoma in June 2011.  She told me in July.  I've been crying my eyes out practically every day since.  Although she has my father to help her out, they're not the type to really advocate for themselves.  My job is tangentially related to medicine (I'm a medical malpractice defense attorney), so believe me, I know how important it is to BE INFORMED and know your options. 

They've had a consult at Sloan Kettering, which I understand is a good place to go for this sort of thing, and apparently the oncologist there agreed with my mom's local oncologist's recommendation for ipi.  It's weird, it seems here on this board that people were presented with choices - like ipi v. IL-2, for example, or as a new diagnosis, perhaps a clinical trial.  My parents (as far as I can tell) pretty much were just offered the ipi. i hope it's not just because it's the "drug du jour." At some point you have to trust your doc, I get it.  (maybe it's just my job that makes me cynical)

My mom is 64, in fantastic health (other than Stage IV cancer, that is) - before this, she didn't take a single prescription med.

The original "spot" was removed from her leg (thigh, i believe) in 2003.  The 2011 diagnosis was prompted after she noticed a right inguinal bump.

As of June 2011 (her baseline scans) this thing has metastasized to her brain (1cm), duodenum (~1cm), right lung (1.7 cm x 1.5 cm), left lung (6mm), and, obviously, the lymph node (1.8 x 1.7 cm).

She is BRAF negative.

She has some slight psoriasis on her elbows and knees.  This is an autoimmune disorder, which I understand can disqualify her from some trials.

She had SRS treatment on the 1cm lesion in her brain.  I was surprised to find her doc was basically 100% confident that the SRS would completely annihilate that lesion, but i guess the fear is that others will arise. 

She has had three ipi treatments.  Other than fatigue, she has experienced no significant side effects and there is no indication that she won't be able to finish the fourth.  She said that at one point, the inguinal bump grew, got kind of inflamed and became tender, but that this reaction stopped.  Unfortunately the bump is still there, and she can't tell whether it's smaller than it was at baseline.

So here are my questions:

1) at what point are you declared a "non-responder"?  At the time of the CT scan?  I have seen the term "late responder" thrown around.

2) is the fact that that the inguinal bump is still there after three treatments a bad sign?

3) after ipi, what other options are there for my mom?  I know she can't have the BRAF drug. I know there's IL-2, which sounds just horrible, and chemo/radiation, which don't seem to work.  What else is there?

Thanks for your time, guys.  

Amanda 
 

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eaca's picture
Replies 3
Last reply 9/21/2011 - 12:35pm
Replies by: eaca, JerryfromFauq, King

Since I haven't found a lot of information on others using pegylated Interferon on this board, I thought I would just post my experience with starting it on Friday, to share with others.  I'm stage IIb and on a clinical trial combining peg-intron with a peptide vaccine. I give myself Peg-intron injections once a week and the vaccine is given by the Dr once every three weeks, all of it lasting 6 months.  So my first injections were on Friday afternoon and I experienced what I gather are the typical interferon reactions of severe chills, aches, headache and fever starting about 5 hours after the injections.  It was a pretty miserable night, as I kept waking up to more aches and fever or to go to the toilet because I was drinking gallons of water.  I was taking Tylenol and as my Dr said to steer away from Ibuprofen, I was concerned about reaching the dosage limits. The effects were so bad that I really felt I needed more Tylenol after 4 hours, but then if I kept up that pace I would have run out of options before 24h had gone by, so I slowed down a little.  The effects peaked probably around 10 hours after the injections, but I stayed pretty miserable most of the day on Saturday until about 24h after the initial shots.  I had some slight nausious feelings, but by eating small amounts I was able to keep that under control.  Then I finally managed to get myself up and showered and dressed to go see some friends in the evening.  The second night was much better already and the second day has been very manageable, with just a few remaining aches and vague fuzziness in the head.  So here's hoping the coming weeks don't get any worse.  I'm going to ask my Dr about other alternatives to Tylenol in case I need more of something on the first night.  Otherwise, I'm determined I'm going to do this!

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bball's picture
Replies 3
Last reply 9/5/2011 - 9:14pm

I had 3.5mm in cheek removed 10 months ago up to this time I have had NED took a CT scan of chest and abdomin 1 month ago all clear. 1 week ago I noticed 1 enlarged lymph node on each side of my groin. I also had taken a injection of Mistletoe about a week prior to noticing nodes. Any experience with any of this

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I asked if anyone thinks I am doing the best thing by going on Yervoy as the cancer is getting worse. I am scared about the side effects. BUT HAS ANYONE HAD EXPERIENCE WITH THE NEW DRUG ZELBORAF.

I need info quickly. thanks Jim

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j.m.l.'s picture
Replies 6
Last reply 9/5/2011 - 12:30am

Please help. This is all new to me. Am I doing the right  thing in starting this treatment given the serious side effects. Operation now not possible. Had 4 prev. opeations and cancer progressing. thank you for fast response.

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Becky C.'s picture
Replies 6
Last reply 9/5/2011 - 11:43pm

,Hi. I had a right groin dissection about 4 weeks ago.  Thankfully all nodes were clear. I was wondering if anyone else that had this surgery has experienced pain and soreness down the inside of their leg. Its like a deep down soreness. It is gradually getting better. I actually am sore on the inside of my shin sometimes. I appreciate any feedback.

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sharmon's picture
Replies 2
Last reply 9/3/2011 - 7:37pm
Replies by: washoegal, Anonymous

Hi,  Brent has been stable on the Gsk mek/ chemo combination for 18 months.  14 of those months with mek alone. When he progressed then they added Alimta. So for the  last 4 months and with chemo added he has been stable again.  The problem is the chemo is very hard on him.  He almost always lands in the hospital after his infusion.   Two months ago they reduced the chemo and there was no difference.  This past week when he went in for the infusion his blood counts were too low.  So he has to go back in two weeks to see if he can receive the chemo at an additional 25% reduction.  What he has been on is working to keep him stable.

Has anyone been through the reduction of chemo and does it get better at the lower doses?  We have another trial he can move to in October using two inhibitors. These two new inhibitors are not from GSK.  It is scary to move, but the chemo does reduce his quality of life.  And there is no way of knowing if the new combo will even work for him.

If we choose to move to the new combo then we need to not do the upcoming infusion to begin the washout  period. 

If anyone has any thoughts or has been through a similar experience I could use some input. 

Thankyou for all your help and input.  This forum has kept me sane.

Sharmon

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rjcravens's picture
Replies 4
Last reply 9/3/2011 - 9:59pm

What can you guys tell me about these results? What does it mean if its Spitzoid type??

 

Malignant Melanoma without ulceration, at least Clark level IV.

Breslow thickness greater then 4.00mm

Mitotic rate: 3/ mm2      What does that mean????

Radial and Vertical growth are present

morphology is epitheloid........what does that mean??

Regression is absent

Microscopic satellites are absent

Neurotropism is absent

Angiolymphatic invasion is absent.

Involves deep margin

I would just like someone to tell me what this all means and be honest with me.

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boot2aboot's picture
Replies 7
Last reply 9/6/2011 - 1:38pm
Replies by: Laurie from maine, Richard_K, TracyLee, Anonymous

I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf...i want to know everything you are going through...

since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine)  i did or which did me in...i am leery of side effects...thank you.

boots

don't back up, don't back down

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jmmm's picture
Replies 1
Last reply 9/4/2011 - 12:33am
Replies by: FormerCaregiver

My husband started Yervoy in May with his last dose July 5.  He had two golf ball sized tumors in May--one in his GI tract, and one near his heart.  At his 14 week scan (mid July), it showed the GI tumor gone and the tumor near his heart "dead" and half the size.  There was an area of concern in some lymphnodes in his abdomen, so we waited and rescanned last week.  The CT scan (previous scans had been PET scans, not sure if that matters or not), showed the mass in his abdomen still there, but unchanged in size.  It's in a lymphnode.  And an additional mass in a lylmphnode in his neck.  The 2 bigger tumors from May are completely gone!  We're so confused.  The Dr. thinks it's disease progression--he had a biopsy done on the neck one yesterday, but from what we've read on Yervoy, it can be a delalyed reaction.  Is it possibly that the Yervoy worked on the two tumors then stopped working and now this is new disease and the yervoy is no longer working?  Or could we wait 2 months and maybe the yervoy would work on these two tumors?  We're so confused and devastated, because we thought he was a yervoy resonder and ecstatic that it worked.  Any thoughts???  We'll get pathology report next week sometime, but we're just anxious in the meantime.  We hadn't read anything about the yervoy working so well for just a few weeks.

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PlantLady's picture
Replies 11
Last reply 8/13/2012 - 10:13pm

My husband, Ron, has been struggling with weight loss, but more frighteningly, muscle loss.  I've posted about this on the board before, when he was having such a bad time with diarrhea from the 2 Yervoy treatments (Yervoy treatment halted).

I've researched (Googled, more accurately) and found that the particular steroid he was prescribed, Dexamethasone (a flourinated steroid) is well-known for causing muscle wasting.  That, while all steroids can cause muscle loss, this drug is the worst of the lot.  Switching from a flourinated form to a non-flourinated steroid (such as Prednisone) could help slow this muscle wasting .   Gee, I wish I'd known that when he was first prescribed a month ago!  We asked if he could be switched, but now that Ron is slowly (frustratingly slow) tapering off, the doctor doesn't want to switch to a different steroid. 

Yervoy can cause weight loss.  Cancer can cause muscle wasting and weight loss.  We really didn't need anything else to contribute to the muscle wasting aspect!

I have started giving Ron more protein.  I make sure every meal contains good quality protein.  We're eating lots of fish (wild caught, good oils) and some pastured poultry/meat.  I'm making him protein shakes twice a day, with MCT oil, BCAA powder, Fish Oil, probiotics added.  We try for around 100 g of protein per day.  This is on top of lots of berries, vegetables, some whole grains, wheat grass juice, and supplements.  It is hard to give him enough calories on a healthy diet, but, believe me, I'm packing them in there!  According to the Life Over Cancer book, by Dr. Block, he should be consuming around 2600 calories to help counteract the weight loss.

I had a hunch that Psyllium might help his diarrhea.  He has 2 servings a day, mixed with water.  This bulked up the stool, which had been watery.  Now the stool is normal.

He has stopped dropping weight!  He has put on a few pounds.

He's still on the Dexamethasone, much to my irritation.

Although he still has a weak voice,  and a bad limp because of Drop Foot/neuropathy, we are hopeful that he can at some point resume the Yervoy therapy.

CJ 

If you're going through hell, keep going. ~ Winston Churchill

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himynameiskevin's picture
Replies 10
Last reply 9/10/2011 - 8:23am

Well, I just got back from the NIH for my monthly scans and it turns out all the tumors they're tracking in my lungs are still stable and/or possibly a tiny bit smaller. Except for one, unfortunately, In my left lung (I don't know if that's their left or my left) They think and hope that this one that appears to be growing is just being defiant of the therapy for reasons we don't quite understand and hope that the others will continue to shrink and stay stable for a long time to come.

So they want me back in 4 weeks, where I will get another CT and PETscan. If the scan shows it's still the only one growing, then the next day they're growing to do surgery on my lung and remove it manually. Hopefully with small incisions, a small instrument with a camera on it and minimal downtime if I lucky. If the scans show more than the one growing, then the ACT I think will have run it course, and there will be no surgery, but hopefully other possible options.

Strange times when you find yourself hoping for lung surgery. ;)

We'll see, you know, maybe there'll be some unexplainable miracle and the thing will just disappear. Maybe everything will, and they'll just send me home with a congratulatory handshake. They say anything is possible right?

Anyway, that's my update, overall I'm doing real good, still working and living as normal as I ever did. We'll see what happens in a few weeks. I'll let you all know.

Thanks for the ongoing concern and support.
-Kevin

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rjcravens's picture
Replies 4
Last reply 9/5/2011 - 8:24pm

So yesterday I went to see the Dermatologist for my three month skin check. He tells me that he doesn't see any "areas of concern" and that he will see me in three months. As I am sitting there listening to him, I almost went into panic mode. I realized that I am trusting my life in this mans hands. If he misses something, will I find it? If we both miss it will it be widespread before I see him again in three months? I cannot handle the fear of not being in control of this situation. (Although I know I am not the one ultimately in control)  The spot on my arm come up in Jan. It grew so fast and so deep. It scares me so bad. Being a nurse I have seen to much and know too much. I know that docs have their good days and bad just like all of us. I left there still having this awful feeling in my stomach that something terrible is going to happen. I have had this gut feeling for two weeks now.

So then after that apt., I go to see the psych doc for the first time since all this started in Feb. I am telling him about this stage of fear that I can't get through. He prescribes Cymbalta 90mg. He says its all normal and in a couple of weeks I should notice a difference. (Note that I have been on cymbalta 60mg since June). He then begins to ask me about my support system. I have to tell you that I am so blessed in this area. I have the greatest husband and kids. My family and friends are supportive. I will never be able to pay my mom back for all her support. The entire family has went above and beyond. Its then that I realize, I am not afraid to die, I am just afraid of leaving my family. I want to see my kids grow up and spend time with family and friends (bargining). I know I am a stage 2b but I am telling you I have this really bad feeling.

The doc also gave me Remeron to help me sleep and not stay up thinking about things all the time. Which brings me to my next issue. My body has to be so confused. I am taking Ritalin in the mornings to fight the fatigue and be able to go to work for 12 hrs, along with the Cymbalta. Then at night i am taking the remeron to help me sleep and on the days i have injections i am taking Zofran and Ativan. My poor heart doesn't know wether to speed up or slow down. Can this be good?

I am done rambling now. Maybe its the interferon that is making my mind go crazy. Maybe its not. I just wish I could get over this whole fear stage.

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MariaH's picture
Replies 6
Last reply 9/17/2011 - 10:48pm

Dave finished his first round of IL-2, taking his last dose at 2:00 pm on Thursday.  If obtaining an immune response was the goal, he did it.  Blood pressure dropped to 70/35, heart rate tached - 160, and a 104.2 fever on tylenol, respiration down to 89 and put on oxygen.  It was the most brutal thing I have ever seen my husband (or any human being, for that matter) go through.  However, by 6:00 am he was sitting up in bed, and by 9:00 taking a shower.  We left the hospital at 2:00 pm on Friday, and other than feeling tired, the itch, and a slight headache he's feeling OK.

He was only able to do 6 bags, since the side effects wouldn't hit for 2 hours after the infusion and lasted right through the next scheduled dose.  That being said, we met a woman there who was only able to do 6 bags each week for her first round as well, and it worked on of her lungs mets (which Dave has) - and she was in for her second round.

I can't thank the people on this board enough for all the info regarding IL-2.  Nothing was a shock to us, and Jane's list brought up every issue he had. 

Hopefully his response means it's working - he'll be heading in for his second week on the 12th, and I already know the waiting for scans will be brutal. I pray this is working -

Best wishes to all the mel warriors out there,

Maria

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JerryfromFauq's picture
Replies 11
Last reply 11/17/2012 - 12:02pm

Putting New Melanoma Drugs to Work in Community Practice
Elsevier Global Medical News. 2011 Jul 18, JS MacNeil

Euphoria - there is no better word to describe the mood in the melanoma sessions at ASCO. For the first time ever, oncologists have two new drugs that can prolong the lives of patients with advanced melanoma. They also have a host of questions as to how to bring ipilimumab and vemurafenib into community practice. We asked four experts during the meeting for their thoughts on what comes next:

• Dr. Paul Chapman of Memorial Sloan-Kettering Cancer Center in New York; lead author of the BRIM-3 study of vemurafenib vs. dacarbazine in newly diagnosed patients.

• Dr. Jedd Wolchok of Memorial Sloan-Kettering Cancer Center; lead author of the phase III trial showing the efficacy of ipilimumab plus dacarbazine vs. placebo plus dacarbazine in newly diagnosed patients.

• Dr. Vernon K. Sondak, chair of cutaneous oncology and director of surgical education, H. Lee Moffitt Cancer Center & Research Institute in Tampa.

• Dr. Alexander M.M. Eggermont, general director of the Institut de Cancérologie Gustave Roussy in Villejuif, France.

Question: Should ipilimumab and vemurafenib be used together?

Everyone we asked said no, not outside of a clinical trial at least for now. No one knows whether the combination is safe or effective.

Dr. Chapman: We are about to start a phase III trial combining these to see if it is safe and making sure that vemurafenib does not inhibit the effect of ipilimumab. We all hope that this will result in sustained complete responses. That is what we all are looking for.

Dr. Wolchok: The natural next step that many of us are considering is how to integrate these two forms of therapy together. Vemurafenib directly targets the tumor by inhibiting BRAF kinase; ipilimumab really treats the patient by starting an immune reaction that hopefully will control the disease. These are very different approaches to cancer therapy. They are in no way mutually exclusive, and I believe them to be quite complementary.

I think it is important that the combination be explored in a clinical trial because I could make a list of reasons why these two drugs would work together; I could also create a list of reasons why they might not work well together and may even be antagonists. So, I think before oncologists begin to combine potentially approved medications outside of clinical trials, we [need to] have some idea that this is a safe and effective way to go. Until then, I think monotherapy is the best path forward outside of a clinical trial.

Dr. Sondak: If you combine ipilimumab with something else, sometimes the side effects aren't what you expect. Don't just take a patient and give them both and see what happens. That's not safe. You have to do this in a controlled way a research study as quickly as possible because it is the obvious next question.

Dr. Eggermont: I think at this point they should wait at least for the safety data on the combination.

Question: So which agent would you use first in a patient who has a BRAF mutation?

Again, there was unanimity - with respect to the patient who is very, very sick.

Dr. Chapman: I think that is a question is that is still open. Where I am on this question right now is that for a patient who is relatively well, who has a fairly good performance status, I would think about using ipilimumab first because that person may have time to respond to ipilimumab since it does take 3-6 months to have the full effect. On the other hand, a person who has a poor performance status and is sick and does not have time to respond to ipilimumab I would treat that person up-front with vemurafenib.

Dr. Sondak: I think there is going to be uniform agreement throughout the melanoma community that if you have a BRAF-mutant patient with widespread disease, symptomatic disease, high tumor burden that person is going to go immediately on to vemurafenib because nothing else is going to get a rapid response, a rapid resolution of symptoms.

The question is going to be [what to do] for 80% of patients who are BRAF mutant but have much less acute symptomatic disease. Maybe they have some lung metastases, some subcutaneous nodules, [and] they can't have it all removed surgically but they are still not in dire straits. And I think at our institution we are going to be very motivated to continue to use the immunologic therapies - the IL-2 for some patients, and ipilimumab for many patients because of the possibility that they will get a big benefit at the other end, not an immediate benefit but a long-term benefit. And then if that doesn't work, I think vemurafenib.

Dr. Eggermont: BRAF-positive patients especially the ones that have rapidly progressive disease or bulky disease that have little time - they will all be treated up front with the BRAF inhibitor. The BRAF-positive patients that have very small disease that is not rapidly progressing could actually also be managed by ipilimumab on first line and only on progression be managed by the BRAF inhibitor because ipilimumab needs more time to work with patients, to kick into activity and into an antitumor effect. ... All BRAF-negative patients would see ipilimumab in first line. That is for sure.

Question: The ipilimumab trial paired ipilimumab with dacarbazine. Is DTIC still an option?

Dr. Wolchok: Looking at the result as someone who has been taking care of patients with melanoma using ipilimumab for several years, I think it is still unknown whether dacarbazine should be added. My own opinion would be to oncologists in the community that if they are going to give ipilimumab at 3 mg/kg to stick with the monotherapy label because we really don't have data comparing ipilimumab with dacarbazine alone at that dose. And so I think we stick with what we know produces an overall survival benefit.

There are reasons to imagine the addition of dacarbazine could make results better by killing some cancer cells and releasing some antigenic debris that would serve as a target for the immune system. Chemotherapy can also be thought of as changing the tumor microenvironment, which might be advantageous, but chemotherapy could also be immunosuppressive. So we could really make a case either way that dacarbazine added to or detracted from or left things just the same.

Question: Will interleukin-2 still have a role in melanoma treatment?

Dr. Sondak: I am still going to use IL-2, and it makes the most sense if you have someone who uses IL-2 most of time, you will want to use that first before you use anything else. Why? Ipilimumab is tough on the patient. We want them in as good shape as possible. ... We know if they get IL-2 first and then get ipilimumab; the results are just as good, if not better. We don't know the opposite way. And we also know that a lot of people on ipilimumab get side effects. They wind up on steroids and other immunosuppressive drugs that would make it very difficult to put them on IL-2.

Vemurafenib is going to change a lot of things. A lot of people are too far gone to have surgery, too far gone to have IL-2. Now we have BRAF mutant melanoma [patients] who will get vemurafenib, and shrink down... If we could keep a close eye and figure out when is right time, we are going to do more surgery and maybe IL-2 in those patients because we are going to restore them to place where IL-2 is going to have more room to work. But it's not going to be 80% of people getting IL-2. It is going to be a very restricted group of people treated by a very specialized group of doctors.

Dr. Eggermont: I think IL-2 will move down in the options list. IL-2 will remain as an option in second or third line, and IL-2 will also be an option in combination with ipilimumab because [Dr.] Steve Rosenberg already did a trial in 36 patients ... and the majority of the complete responders are alive 6 years and longer and are still in complete remission (ASCO 2010, Abstract 8544). The combination of IL-2 and ipilimumab will be relaunched, I am sure.

Question: And interferon - Where will it fit in?

Dr. Sondak: We don't know how long we should treat people, how intensively, and how we should combine the new and the old, and the data that we have just doesn't sort it out. On the other hand, if you look at the whole landscape, it actually makes adjuvant treatment with interferon more important now than it used to be.

It's very clear that interferon treatment does delay recurrences in a substantial fraction of patients. It may not cure many people, but it delays recurrence in quite a few people, and right now today we are so much better off than we were in melanoma 2 years ago and I have no doubt that 2 years from now just with stuff we heard about at this meeting we will be much more clear on how do we use how do we take care of side effects not to mention other new exciting drugs that we hope 2 years from now will start to be available.

In the past we debated, does it even matter that we delay recurrence. The ASCO answer should be, "It absolutely matters to our patients." So interferon and any form of adjuvant therapy is suddenly a bridge. It is a shaky bridge - made with some ropes and a few planks - it isn't very sturdy to walk on, but we're trying to get from here, one place where it was safe to another place where hopefully we are better off and not at the bottom of ravine. It's real exciting - not just the data we already have but for the future and how many patients this will affect positively.

Dr. Eggermont: I think you need to separate the new drugs from the question, what are we going to do in adjuvant? In adjuvant right now, we will still have to wait for about 2.5-3 years for the outcome of the EORTC trial that randomized in double-blind ipilimumab vs. observation in patients with high-risk lymph node positive disease. That answer about ipilimumab in the adjuvant situation will not be there before 2.5 years from now. That means that until then there is only one kid on the block in the adjuvant setting, which is regular interferon, and the currently novel approach of pegylated interferon.

I'm me, not a statistic. Praying to not be one for years yet.

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