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
Anonymous
Replies 1
Last reply 8/10/2016 - 6:00pm
Replies by: Aaron

Hello!

I had a WLE for a stage 1a lesion on my right lower calf on 07/27- 1cm margins with skin graft. I'm just wondering if you can give me any insight into how quickly I should expect it to heal?

Right now it pretty much looks the same as a week ago when they took the boot and wound vac off. It looks less like skin and more like flesh. There is no sign of infection but I'm a little worried the graft isn't taking since there is a pocket of blood in part of it.

I messaged my surgeon but it will take a day or two for him to get back to me. I'm cool with that since I'm not sure there's too much to do about it right now.

Any input from those who have had a WLE with skin graft?

Thank you!

Alc

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/10/2016 - 5:26pm
Replies by: Vas, debwray, SABKLYN

Hello , in April I noticed a 2mm black mole on my lower bicep, nothing irregular other then the color,  black as all my other moles are brown. Both my family doctor and dermatologist said to observe it and if it grows to remove and biopsy,  but since I didn't like the color I had the mole removed and sent to lab. This is what they said..

 "atypical compound melanocytic proliferation,  extending to the base of the specimen and very close to the peripheral edges.  NOTE: THIS LESION shows some features of a compound melanocytic nevus with architectural disorder and cytologic atypia of melanocytes (dysplastic nevus) as well as overlapping features of a pigmented Spitzoid proliferation/neoplasm. Atipical findings also include focally prominent pagetoid migration that be be related to prior trauma, however, an evolving higher grade lesion / melanoma cannot be excluded with certainty. A recent excision is recommended to ensure the entire lesion has been removed and for further evaluation of any remaining lesion.

 I'm confused as even my dermatologist couldn't fully explain to me what this means , I had WLE done on Monday and waiting for my results anxiously I might add! 
 
What I can't figure out is , is it DN AND if so mild , moderate , or severe? It's very confusing as because they do mention melanoma in the report.  Any input would be appreciated ! Thanks
 
Vas
 

 

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Momofjake's picture
Replies 20
Last reply 8/10/2016 - 2:40pm

Hi all,

Just checked in to see how everyone is doing. Crazy, my same people I look for are doing the same thing we are over here. Enjoying the good days, fighting through the hard ones and always looking for the next option or making big decisions. To all of this I say--you are one tough group! Inspiring, supportive, knowledgable, kind and very helpful! 

So Jake. He turned 19 Friday. A milestone. Another birthday! Yay! It's been a rough go lately. Jake failed keytruda. Disappointing to say the least. He just kept growing more tumors. His tumor load is so large now they put him on the Taf/Mek combo. Interesting that our specialist wants to wait for what he thinks is the optimum point of shrinkage the stop the combo and move right to ipi. Jake has not tried ipi. Well, after 3 good weeks on the combo he became VERY sick. Ha spent 7 days in a dark room w high fever, rigors, vomit etc. He refused to see his doctor. I knew he had to get up with so many lung tumors. He finally did. He is 6'1" and is down to 148 again. He just doesn't look good. They cut the Mek. He will start it again on a lower dose and is back on the Taf. His back was hurting so they did an MRI. His spine tumors have shrunk. That made for a pretty happy birthday:) Full scans June 13. Still plugging along. I just booked a big vacation Jake chose for July 22. A private, awesome beach house! Can't wait! Prayers and love to you all! Enjoy every good day!! We can do this❤️

Kerri--momofjake

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LizaC's picture
Replies 24
Last reply 8/10/2016 - 2:15pm
Replies by: WITom, LizaC, MoiraM, Gene_S, Ed Williams, Bubbles, Anonymous

My partner is stage IV, braf positive, no primary was found. Diagnosed August 2014, 2 years ago. She's been on brafi combo and Keytruda, Responded to both, brafi for 12 mths with 98% tumour reduction. Pembrolizumab for 3 months, due to aggressive Mel in her bone marrow as a consequence of brafi resistance. Keytruda saved her life in January and got rid of all Mel from the bone marrow but not much else. She went back on the brafi 2 months ago, half dose due to side effects and got a mixed response, not enough response as mel has continued to progress, no longer on brafi. Had internal radiation for liver 3 weeks ago, hysterectomy 8 weeks ago, including removal of 2 masses (which were NOT Melanoma, but sarcoma!) Like many of you, been through it all.

She starts IPI next week with radiation.

For those of you that have responded to IPI (be it partial or complete response,
I'm VERY interested in the following information:

-Braf status
-Treatments pre IPI
-deposit areas
-know the Immunohistochemical
stains for melanocytes after biopsy. Eg. SMA s100, melan-a, HMB-45..

We will continue to fight this insidious diease. Blessings to you all..

Thank you,
Regards
Liza

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Anonymous's picture
Replies 2
Last reply 8/10/2016 - 4:16am
Replies by: stars, keepthefaith11

Hello!

 

I am a 32 year old women who got a skin check last year for the first time.  My derm biopsied 3 moles.  One was mildly atypical and two were moderately atypical.  He re-excised the moderately atypcal moles.

After those excisions were complete, he biopsied two more.  They both came back severely atypical, with one noted on the path report as a "possible evolving melanoma in situ".  They were all re-excised with clear margins.

The mildly atypical mole from my original biopsy grew back.  They re-excised that one too.

Last week was my 6 month skin check.  He biopsied three more moles, and two came back severely atypical and one came back moderate.  He plans to re-excise them all.  He warned me that the one on my foot will be hard to heal, and may require antibiotics.

That makes 8 excisions all together, with half being severely atypical.

My questions;

1) Should I be going to a dermatologist who specializes in Melanoma or pigmented lesions?  I like my guy but this seems like a situation that maybe calls for someone who isn't doing Botox half the time.

2) Is he being too aggressive?  Do I really need all of these surgeries?  It feels overwhelming.  Do you think the moderately atypical moles really need to be excised?

3) How worried should I be about the possibility of Melanoma?  Because I'm starting to worry.  It feels like every time I go in we biopsy or remove another atypcal mole. 

Any advice or words of encouragment very much appreciated!

Meghan

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Aubreesmommy41's picture
Replies 9
Last reply 8/9/2016 - 10:32pm

Can someone look at this scar on my arm and notice the little brown streak on the left end side? Also there are no pea sized lumps I've read about but it feels just a little lumpy when you run your fingers across it. I had it done on April 6th of this year for a .40 mm melanoma.. Supposedly clear margins. Path report says pt1a. Should I be worried this is a recurrence? I can't tell if it's the lumps people talk about or just normal healing scar tissue. Scared.. I have a 6 month old baby. :(

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JohnA's picture
Replies 5
Last reply 8/9/2016 - 10:08pm
Replies by: Bubbles, mjanssentx, slh4448, Polymath, Anonymous

I saw this today and thought it would be relevant to many of you on here, as I've seen this discussion come up from time to time. Study suggests better survival and similar side effects for Nivo - Ipi - Nivo than with Ipi - Nivo - Nivo.

Here's the link, but in case it will not be allowed through, I've copied the text below too.

http://www.onclive.com/web-exclusives/weber-discusses-sequential-versus-...

 

Weber Discusses Sequential Versus Concurrent Immunotherapy in Melanoma

Laura Panjwani @OncEditorLaura
Published Online: Monday, Aug 08, 2016
 
 
 
 
 
 
 
Jeffery S. Weber, MD, PhD

Jeffery S. Weber, MD, PhD

Nivolumab (Opdivo) and ipilimumab (Yervoy) have demonstrated considerable success in the field of metastatic melanoma as both single agents and in combination. However, questions remain regarding sequencing the agents and the high toxicities that often occur when the 2 immunotherapies are used together.

To explore these challenges, OncLive spoke with Jeffery S. Weber, MD, PhD, deputy director of the Laura and Isaac Perlmutter Cancer Center, co-director of the Melanoma Program, and head of Experimental Therapeutics at NYU Langone Medical Center.

Weber discusses findings from the phase II CheckMate-064 trial, in which patients were randomized to receive either nivolumab followed by ipilimumab followed by nivolumab maintenance therapy, or ipilimumab followed by nivolumab and maintenance therapy with nivolumab. He also places the results from this sequential study in the context of findings from the phase II CheckMate-069 trial, which examined the combination of nivolumab and ipilimumab in patients with advanced melanoma.
OncLive: Could you describe the goals and design of the CheckMate-064 trial?
Weber: CheckMate-064 was a trial that was written by F. Stephen Hodi, MD, of Dana-Farber Cancer Institute, and myself, which became a Bristol-Myers Squibb–sponsored trial, that ultimately evolved to a randomized phase II trial. This was a trial in which 140 patients were randomly allocated to receive sequential immunotherapy. This means that patients were randomized 1:1 to receive 12 weeks of induction nivolumab in what we called cohort A, followed by a forced switch to 12 weeks of ipilimumab and then maintenance nivolumab every other week at 3 mg/kg until progression, toxicity, or refusal.

In cohort B, the opposite sequence was given: 12 weeks of ipilimumab at the standard dose at a schedule of 3 mg/kg every 3 weeks for 12 weeks and then a forced switch to 12 weeks of nivolumab and then maintenance nivolumab until progression, toxicity, or refusal. Cohorts A and B varied only in the reversal of the sequence, the total treatment would have been the same in either cohort; the timing was just different.

The primary endpoint was grade 3, 4, and 5 adverse events (AEs) by the end of the second induction cycle at week 25. Secondary endpoints included response rate, PFS, and a variety of biomarker studies. It was also a very important biomarker study. Patients on this trial predominantly have leukapheresis at time 0, after the first cycle at week 13, and after the second induction cycle at week 25. We had biopsies before and after in a fair number of patients.

The exploratory endpoint also included survival comparisons between the arms. The demographics showed that while there was a fairly good balance between the 2 arms, there was actually an imbalance in the PS1 patients who favored cohort A. There was also a slight imbalance in patients who had brain metastases that went the other way. There was also what appeared to be a significant imbalance in the PD-L1 population. There were more PD-L1–positive patients by the 5% in cohort A than cohort B. Therefore, there were 2 prognostic factors that appeared to favor arm A—but one that appeared to favor arm B—which was fewer patients with brain metastases.

The eligibility was very straightforward. You could have failed a systemic therapy, but you could not have had a previous PD-1/PD-L1 antibody or a CTLA-4 antibody. Most of the patients were treatment-naïve, but a good proportion of them had 1 prior systemic regimen. If you had brain metastases, you had to have them treated and be stable for at least 4 weeks. It was a metastatic cohort that one would see in any registration study, with the exception of that slight imbalance between the arms.
What were the findings regarding toxicity?
In the first induction cycle, there were no surprises as they were only receiving 1 drug. There was a 7% grade 3/4 AE rate in the nivolumab arm and about a 20% grade 3/4 AE rate in cohort B that received ipilimumab.

The surprise was that, by week 25, we actually saw more toxicity in cohort A at about 50% versus about 42% in cohort B. That is getting up to the rates that we are seeing with concurrent therapy. Please be reminded that the reason we did the trial was to try and achieve equal efficacy of concurrent therapy by sequencing the drugs to lower the toxicity.

- See more at: http://www.onclive.com/web-exclusives/weber-discusses-sequential-versus-...

If you look overall—meaning beyond week 25 to include maintenance therapy—about half of patients received maintenance treatment in either arm. There was well over a 50% rate of grade 3/4 adverse events—no deaths—but a 50% rate in arm A and a slightly lower rate in arm B. This suggests that, in terms of toxicity, we did not do better than concurrent therapy.

What were the efficacy findings?

The best overall response rates were surprisingly different. Arm A, at the end of the day, had a best overall response rate of about 54%. It was only about 30% in arm B. That is a big difference, as if somehow getting the induction of ipilimumab with the forced switch to nivolumab compromised patients’ ability to respond to the subsequent nivolumab.

We were very surprised. This translated into a very impressive difference in survival. If you look at the survival curves at 1 year, with about 18 months of total follow-up, there was a very big difference between cohorts A and cohort B. Cohort A had a survival somewhat similar to the concurrent arm of the CheckMate-069 trial, whereas cohort B was probably not even as good as the crossover arm that received ipilimumab on the CheckMate-069 trial, when many of them crossed over to nivolumab.

The hazard ratio for the difference between arm A and arm B, in terms of survival, was about .5. That is a very significant hazard ratio. If you look at the curves, they split apart very early—literally before the first evaluation at week 12, and they stay apart and appear to almost plateau. For arm A, the survival was around 60%, which is not that much different than the 69% seen in the concurrent CheckMate-069 trial that led to the approval of the concurrent regimen.

What should be taken away from these findings?

Our conclusions were that there was not a very big difference in toxicity; both arms were very similar to concurrent therapy. The hypothesis that we had when we set out was not satisfied. We could not reduce toxicity by giving sequential versus concurrent ipilimumab and nivolumab.

The other major conclusion was that one sequence was clearly superior in terms of response and survival. It is much better to get nivolumab followed by ipilimumab versus the reverse. The numbers were not that big, and there were some imbalances between the 2 arms, but those tended to cancel each other out. My impression was that I would absolutely discourage patients from receiving frontline ipilimumab and then, at some point, going to nivolumab.

It simply reinforces the opinion of many investigators in the field that you should go with nivolumab first and then, maybe, if you need to switch to ipilimumab, there is no advantage of doing that over concurrent therapy—in terms of toxicity.

 

Weber JS, Gibney G, Sullivan RJ, et al. Sequential administration of nivolumab and ipilimumab with a planned switch in patients with advanced melanoma (CheckMate 064): an open-label, randomised, phase 2 trial. Lancet Oncol. 2016;17(7):943-955.

- See more at: http://www.onclive.com/web-exclusives/weber-discusses-sequential-versus-...

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slh4448's picture
Replies 12
Last reply 8/9/2016 - 7:26pm

So today I met with my oncologist. The great news is that my pet scan and mri came back clear...whew!! So I am stage 3a. Then our discussion turned to the clnd of my right groin. As many of you know from my posts and your responses about this very topic lately and my anguish and worry about whether or not to have the clnd, I decided after much discussion and many questions that I am going forward with it. My surgery is on August 26th. Around late September or early October I will then start my immunotherapy. I was definitely wavering and even as I type this, I still am, really. But both MD Anderson and my oncologist at KU agree that this is the next step that I should be taking. I will evenutally be at peace with it and have put my faith in God that everything will turn out just fine. Won't be easy or pleasant but I'm a fighter, really pretty healthy and a very good immune system, so F-it! I'm swinging for the fences with God by my side!! I really appreciate everyone's support and responses and encouragement regarding this.

Stacy

 


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Joycem's picture
Replies 8
Last reply 8/9/2016 - 2:54pm
Replies by: jbronicki, Joycem, landlover, Anonymous

Hello,Newbie here,  

I had WLE/SLNB for nodular melanoma diagnosed a couple weeks ago when I went to dermatologist for first time to remove a pink skin colored eraser sized bump from upper arm, really for cosmetic reasons. My primary care had looked at it years ago (I hugely underutilized health care until now, despite being a pharmacist, guess that finally caught up with me) and said it was fibroma, nothing to worry about, and maybe it was then (I hope..)

I had grown tired of not wearing anything sleeveless and decided to pay to have it removed even if not covered. 

Saw CNP, she shaved it off out of office in < 30 minutes... Cool. She called me with biopsy report...not cool. Referred to melanoma clinic at Steidman Cancer Center in CLE, couple Dr. /location switches due to insurance issues, concerning but seems ok so far.

Been studying up, (yikes) waiting for appts etc. and appreciate all the shared experiences here already. Valor, generosity kindness and wisdom abound. 

 I found the procedure day today much less unpleasant than anticipated. Indeed the anticipation/dread so far much worse than reality.  Little pain, but curiously wakeful tonight. 10/10 A+ to all staff I encountered at St. John's Med Center, from pre admission to transport to nuclear tech to surgery to recovery. 

Suggestions for dealing with the wait time for results? My mind wants to run ahead with so many ifs and thens, but I feel like it's a bad idea to go down all these mental rabbit trails until I need to. (A little knowledge can be a dangerous thing) 

 

 

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katek's picture
Replies 3
Last reply 8/9/2016 - 10:10am
Replies by: Casitas1, katek

Hello --

I was diagnosed with lentigo maligna melanoma in February. Four surgeries and two skin grafts later, I'm about to start 6 weeks of radiation for a recurrence that was called 'neurotropic desmoplastic melanoma'. It's quite a rare critter. Given the amount of my cheek that's been removed and the size of the skin graft, I still "look like myself," i.e., have my facial nerves, expressions, etc. that I think of as me. I'm wondering if radiation will affect the nerves that control expression. In the scheme of life, it's all okay. I still have melanoma beneath the deepest point of the latest biopsy, 5.5mm; this radiation is supposed to knock that to Kingdom Come. 

I've been feeling pretty alone in this experience of desmoplastic melanoma(wonderful family and friend support so I'm not wishing for that) but rather someone else who may have this type of melanoma or melanoma on the face. 

Many thanks,

Kate

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Lyric17's picture
Replies 35
Last reply 8/8/2016 - 7:37pm

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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Esmith123's picture
Replies 1
Last reply 8/8/2016 - 10:01am
Replies by: Ed Williams

I am going to the dermatologist on Wednesday to show my derm a couple spots on my skin that I am concerned about. All my moles are 2mm or less. The more I read online about Melanoma, the more terrified I am and I constantly obsess over my moles and compare them to images online. I am in my early 20's with no history of melanoma and no family history of melanoma, BUT I have tanned in tanning beds and outside, so this does put my at a much greater risk. 

None of my moles have changed over 6 months.. what are the chances that my tiny moles are melanoma? Would I have noticed any changes? I do not know anyone who has had melanoma, so I don't know who else to turn to and my doctor just simply doesnt look at my moles because they are so small he just assumes they are fine. Please help!

Thank you!

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/8/2016 - 9:53am
Replies by: Racetraxx1, jennunicorn, Anonymous, youngann

I have two moles on my face that bother me. No derm has ever told me to get them off but everytime I look at them I get anxiety.  I play several outdoor sports and my face is always in the sun and sometimes im not wearing sunscreen so I'm always worried about these two moles going haywire?  I have never had melanoma but did have 1 atypical mole removed years ago and it was the Lowest level.  The one mole is on my temple and I have always had it. It is about 4mm. The other appeared on the bridge of my nose after a golf trip in 2011.  It is dark, tiny,maybe 2mm but shaped like a lightining bolt which I thought was odd but several derms viewed it over the years and said nothinh.   My question is do you think it's prudent to remove these moles and if so what's the best way to minimize scaring ? 

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lrkg1234's picture
Replies 20
Last reply 8/7/2016 - 6:34pm

My husband Scott has stage 4 mucosal melanoma.  He has just been diagnosed.  There is no known origin. 

It has spread to the liver.  We are not able to do surgury because of the spreading to the liver. 

Scott is going to have further tests for mutations, a PET scan and more full coverage CT scan to see if it has spread to the brain. 

We were given 3 possible options for treatment:

1.  Interlewken-excuse my spelling, but you know what I mean.  I believe it's the same as Interferon. 

2.  Zelboraf, if Scott has the Braf mutation. 

3.  Yervoy, seems effective.  An option for now if the cancer has not spread to the brain. 

We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first. 

It seems like it would be good to have the Braf mutation so that there is another option. 

Any advice is appreciated.  I'd like to hear about experiences that others have had with these drugs. 

We are sort of in a walking coma right now trying to process this all.  It's been overload on the brain. 

One plan was to go to MD Anderson or Dana Faerber for a consult and see if we can get any other options.  

Please help if you can, there is so little out there about this.  Lisa

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