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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Aaron's picture
Replies 6
Last reply 8/12/2016 - 10:34pm
Replies by: KAF, Aaron, slh4448, MoiraM

Well it is what was suspected. My MRI was swollen and I have now been taken off my scheduled treatment plan. I meet with an endocrinologist tomorrow and will get another more detailed MRI. My blood test revealed that my ACTH, TSH, and cortisol levels are very low and I am now on prednisone. Strongly believe I am beating this and that this is all going to mean good things in the end. 

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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 3
Last reply 8/16/2016 - 1:29pm
Replies by: Anonymous, asdff12344, jennunicorn

Hi everybody:

I'm new here.  Here is a little background.  I am 27 years old, male, Asian.  I have been sunburnt before.  More importantly, I got sunburnt a lot in high school (I used to live near the beach) to the point my skin started to peel.  I have no history of skin cancer or melanoma.  I had no issues with it until now. 

Recently, I checked my already-existing mole (I think it is a mole).  I had it for a couple years (maybe 2 years).  It does not look like a mole.  It is circular with no middle (the middle is a normal skin patch).  There are no ABCDE signs.  What caught my eye was that it became darker.  Nothing changd about it, but it did grow darker.  Thus, the doctor wanted me to get a biopsy, which I did this morning.

I did go out to the sun last month.  One, in Las Vegas (swam outside for maybe an hour).  Second, July 4th (where I swam in the ocean for about an hour).  Would this make this scab/mole-looking thing darker?  Should I be worried?  The original color was a light brown.  Now it is a darker brown.

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dmturner's picture
Replies 14
Last reply 8/11/2016 - 10:00am

Hi All:

Pretty new here.  Sad but true.  My story goes as this...I work on my feet and was having an area on my heel that was sore I put up with it for a couple of months then decided to go to my podiatrist (June 2016).  He thought it was a plantar wart and cut it off and sent tissue to the labs.  "No worries, that is just what we do".  Well got a call a couple weeks later and he was frantic, called me Friday night and Saturday afternoon.  I of course called him back when I heard his message.  He already got in contact with Skin Cancer Specialist in Dallas.  Got an appointment and then a week later had the Mohls procedure.  It was pretty deep 4 mm.  So he recommends me to a doctor at Texas Oncology and see him and put in orders for a brain MRI and Pet Scan the very next day.  All came back good.  So he gets me in to see the surgical oncologist and we make a plan to have a SLNB the next following week.  (I am off work for a medical leave, can't work with big ole hole in my heel).  The one biospy behind knee was negative the one in my right groin was positive.  My leg is a bit swollen still but I have been working.

Today, just meant up with my oncologist and he suggest the "CLND of the right groin area but there is other options."  By the way I read up on thru this forum.  Yervoy.  I weigh the pros and cons and decided on Yervoy.  Because of the possible long term side effects of lymph node dissection.  I work on my feet.  I would be off work for 4-6 weeks.  I have used up sick time.  Etc.

My question.  Has anyone else decided to do this route.  I mean if it has spread and the PET scan did not detect it then the Yervoy would help with the whole body.  What if there isn't anymore cancerous lymph nodes?

Just so overwhelming.  I mean from June 10th (podiatrist) to August 9th.  All this in a 2 months span.  I have no other issues except high blood pressure and cholestral  both under control.

Thank you in advance!!!

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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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JoshF's picture
Replies 10
Last reply 8/11/2016 - 7:56am

So I had last radiation treatment, 3rd and final infusion of ipi (start washout for trial) and interesting blood work results. Not to get long winded but trying to make sense of what I found on the one and only Bubbles blog in regards to NLR and elevated eosinophils. So I noticed in the past 3 blood tests that my eosinophils have gradually been going up and this last blood test shocked me a bit. Now I think I understand NLR and it's easy to figure out...I've always had an NLR less than 5 which would make sense that I did initially have a good response to ipi and hoping that ipi does something for me again this time. What really caught my eye was the elevated eosinophils. I know different labs use different ranges and I've noticed this from MDA, to my local onc to my PCP. That being said, for the the most part the ranges fall into what Celeste had on her blog...this is what my current blood test said...

Eosinophils 1.1/Kmcl with a standard range of .10-.50

Eosinophil % mine was 20%...normal range 1-6%

Both of these were marked as high...

This explain why I feel like I have a fever at times but no temperature? Or can eosinophils be elevated from radiation? Seems unlikely and nurse said high doses of radiation lower some blood counts and that my dosing wouldn't be significant. I did my NLR and it was less than 3. I of course am trying to be optimistic but cautious because as many of you know, I went NED on ipi only to be back in trouble. I by no means have been typical which is why I tell myself not to look at this stuff...I guess it's the hope that I can and will overcome this to watch my kids get older. It's why I keep seeking out everything and anything to beat this...

Josh

Let's work for better treatments....for a cure!!!!

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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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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
Replies 2
Last reply 8/29/2016 - 8:41am
Replies by: casneek, Anonymous

we DO understand all treatment options out there and have been through most of the approved newer ones. Were are curently looking at intratumoral injections of il-2 . So far we can not find anyone curently doing this. They have done this at Huntsman combined with yervoy but not now. I think they are doing it now but not in the US. So if anyone has run across intratumoral injects of il-2 or combined with yervoy or keytruda / opivido let me know. If you get a chance ask around AND THANK YOU IN ADVANCE.

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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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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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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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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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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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