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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POW's picture
Replies 8
Last reply 12/13/2013 - 2:40pm
Replies by: Anonymous, sofistef, POW, Bubbles, BrianP, awillett1991

According to the "Top News Stories for 2013" thread, the hottest thing in melanoma treatment now is the combination of ipilumumab (anti-CTLA4) + Nivolumab (anti-PD1). The Phase 1 results reported by Wolchok et al at this year's ASCO meeting showed that more than 50% of the patients treated at the best dose experienced significant (>80%) tumor shrinkage which lasted more than a year (the end of the trial).

This summer, BMS began sponsoring a Phase 3 clinical trial called "Checkmate 067" ( NCT01844505 ) where patients will get ipi or nivolumab or both. Note that there is actually no "placebo" group or "interferon only" group or anything like that. Participants will get either the best available treatment (Yervoy) or the anti-PD1 or both. A win-win for patients. Also, this trial is open to Stage III unresectable as well as Stage IV patients.

This sounds like a great trial. I know that some of you are on it already and are experiencing great effects. What puzzles me, however, is that when I read the ClinicalTrials.gov write-up, it says that the inclusion criteria require "Treatment naïve patients". Then, in the next paragraph, the exclusion criteria include: "Prior treatment with an anti-Programmed Death receptor-1 (PD-1), anti-Programmed Death-1 ligand-1 (PD-L1), anti-PD-L2, or anti-cytotoxic T lymphocyte associated antigen-4 (anti-CTLA-4) antibody".

So which is it? To get on this trial, do you have to be completely treatment naive? To me that means NO prior treatment-- no radiation, no Zelboraf, no interferon-- nothing. Or do you just have to be naive for anti-CTLA4 and anti-PD1?  

(Note that a new termininology is starting to be introduced in the field. It appears that melanoma specialists are reserving the term "immunotherapy" to mean IL-2 and interferon. These new immune-based therapies (anti-CTLA4, anti-PD1, anti-PDL1, etc) are being called "checkpoint inhibitors"-- hence the name of this clinical trial. I helps to keep up with the jargon.) 

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jag's picture
Replies 7
Last reply 3/15/2014 - 7:23am

http://www.fhcrc.org/en/news/quest/2013-12/revolutionizing-solid-tumor-treatment.html

Sometimes you just get really lucky I guess!

Hello to all of the people that used to know me, and thanks for all of your help  

I used to give advice on treatments, but considering the fact that all of my treatments were over 5 years ago, I haven't really kept up enough.  

Hope is all I have to offer. 

John (Elmer Fudd)

Insert Generic Inspirational Motto Here

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NYKaren's picture
Replies 6
Last reply 12/12/2013 - 2:09pm
Replies by: NYKaren, Anonymous, awillett1991, JoshF, pd1gal, Brendan

I saw Dr. Pavlick yesterday after first having an MRI (brain), CT pelvis, chest & abdomen. All clear.   Brain is still a bit swollen but neurologist is very happy. I had just stopped Decadron, felt horrible. I'm back on 2 mg., going down to 1 and then 1 1/2 each week

dr. Pavlivk is starting me on Menkenist. It should arrive by Friday ( if the mail order gets it in--they-re experiencing shortages-- what a surprise).   So I will be on combo w/Tafinlar. Interesting that when she subscribes 2 mg/2x day, many people experience liver toxicity. So she'll start me om 1.5 mg./2x day and have bloods drawn tues or wed, depending on when I start it. 

It is my great hope and prayer that this will hold me over until PD1 is approved. 

Let's pray that we can finally beat the black beast!

all the best,

karen

Don't Stop Believing

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Yvonne.D's picture
Replies 4
Last reply 1/10/2014 - 12:32am
Replies by: Yvonne.D, Janner

I have just been diagnosed with Melanoma and looking for some help with my report. I need to stay positive, strong and informed for my 5 month old, 6 1\2 year old and my husband and hoping someone can help. If anyone can help me explain my report for me. Also if anyone has been through what is close to my diagnosis I would greatly appreciate your comments or experiences and what treatments you have had. Everyones cases seem to be different in some way so even any thoughts would be wonderful.

Here goes. Biopsy Report.

Surgicial incision with 1 cm MA of skin. Left thigh. Superficial Spreading Malignant Melanoma. Level 2 invasion, vertical height 0.47- No ulceration. Mitotic index is one mitosis per 1 mm squared.

On November 18th I had an appointment with the Dermatologist who looked at my mole. She then made an appointment on the 27th to have a biopsy. On the 27th she did a shave biopsy. Apparently she was ruling out 3 possibilities. She said make an appointment to come back in for the results which was going to be for tomorrow however my family doctor called to tell me last thursday to tell me that it was Melanoma. I called my dermatologist right after that tryin to get in earlier to see them for the results which was now really just for the specifics on how bad it was as my family doctor was only able to tell me it was superficial. So I was a mess that day thinking my children and husband were going to be without me very soon as I have only ever heard that melanoma is a death sentence and was not educated at all about melanoma. I don't think I have read as much as I did over the past 5 days about other peoples stories and information about it. Thank you to everyone who posts. I did get in yesterday for the results because they had a cancellation. I have an appointment on December 31st to have a surgery. I have to call the nurse back tomorrow just to discuss a few more details about the report as I was just listening as she went over specifics and didn't know the right questions to ask or more so couldn't. Now I have a grip of myself enough to talk and be the best informed and educated patient I can be hopefully with a little help for you guys.

I do suspect that I have more on my body as well. The one they diagnosed was brushed aside saying it looked fine by my family doctor as well as by my OB after I asked what they thought about it. I cannot say enough to other people to go with your gut and get that referral if you suspect it is not normal. They are both wonderful doctors and could not say a bad thing about them, after all they are not a dermatologist.
I have an appointment in the New Year to do a full body with my dermatologist.

I am in Southern Ontario and have a few cancer hospitals from a 30 min drive as far as a 1hr 30min drive so I am feeling positive that if need be I can get the care I need very close.

I was going through web pages trying to figure out my diagnosis and think I may be a T2A as of right now please correct me if wrong. Once I have my surgery that may change as the nurse said they didnt get it all when hey shaved it and could be bigger.

Your thoughts, suggestions, anything would be greatly appreciated.

Yvonne.

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WendyD.'s picture
Replies 5
Last reply 12/14/2013 - 12:37pm
Replies by: Janner, WendyD.

I was just diagnosed with melanoma Dec.6,2013. Here is what my pathology report says: Malignant Melanoma Breslow thickness .30mm, no ulceration,mitotic index per mm square 0, peripheral margins negative, deep margins negative, lymphovascular NIL, AJCC/TNM classification: pT1a NX MX. My doctor said he got all of the melanoma out during my intial biopsy. So with that said will I have to have a SNB and WLE? Any information will be greatly appreciated.

In God I Trustsmiley!

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scrapps's picture
Replies 2
Last reply 12/12/2013 - 1:03pm
Replies by: scrapps, POW

So i do not  frequently post, but I do come here to  listen and learn rom all the other brave people figting this beast. In Aug of 2012  I had a WLE and SLN biopsy perfomred after discovering a 1.7mm ulcerated, nodular melanoma. One microscopic met in the SN. Had the CLND last October and decided on the peg interferon because I didn;t think I could do  the wotch and wait. I made it through 3 self injections and couldn't rationalize the side effects for the minimal channnce it helps. Since then, we have been doing the "wait and watch" I have had 2 PET/CT scans, the first of  which wass clean and had the second yesterday. Asmall hot  spot was found in the muscle int he back of  my left  shoulder. My original mel and CLND was on the right. Doc said it was not a usual pattern for  Mel, but we all know it  doesn;t follow  many patterns. The other confussing thing to all of us was that the area that lit up was not seen on the CT portion of the scan.Doc suggested an US and biopsy which I am trying to schedule. On my car ride back  after the scans I started processing the info and remembered I had a tetanus booster last wed. in the back of  my left arm. Has anyone heard of immunization  sites showing increased uptake in a PET giving a false positive? The articles I found showed some false positives assocciated with the flu shot so I am holding out hope  that is what it is.

 

Thanks for the help

 

Wil

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Anniejoy1's picture
Replies 6
Last reply 12/17/2013 - 9:57am
Replies by: Anniejoy1, Janner, POW

Hi all:

It's been 4 months since my WLE & lymph node dissection. I recently had 2 urine tests come back positive for Melanin, has anyone else experienced this?

 

I'm hoping it's some supplement I'm taking that has caused a false positive.

Thanks

Annie

 

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doro's picture
Replies 1
Last reply 12/12/2013 - 8:25pm
Replies by: NYKaren

Hi everyone,

I read the board regularly but haven’t posted in awhile because things have been stable. Fortunately, I have some good news to share.  A little over a year ago, my father was diagnosed with melanoma and had an 10 hr surgery to remove the primary and lymph nodes (posterolateral neck dissection). Last week (one year to the day after his surgery), we had an appointment with his oncologist who shared that his most recent PET/CT was clear. So Dad has officially reached 1 year NED!  

I don’t think we had allowed ourselves to really think about the one year milestone before the meeting, but it feels really good. He was diagnosed just before Thanksgiving last year, and it was a really tough holiday season with so much uncertainty about his prognosis and traveling to get second/third opinions while he was still recovering from the surgery.

For those interested, my father started on interferon but after 3 weeks of high-dose he ended up in the hospital with a severe case of diverticulitis. It took awhile for the inflammation to subside and due to this sensitivity towards colitis, his oncologist recommended BRAF as the next mode of treatment (Dad’s primary was at the back of his head and with positive nodes on both sides of his neck we got varying diagnoses of Stage III and IV, which is why he first tried interferon but then was able to get BRAF). I know some on this board are of the opinion that it’s best to try everything else and save BRAF for when it’s really needed, but we decided to accept the doctor’s advice. He really stressed the importance of keeping Dad healthy as long as possible (and perhaps he will not recur anyway – fingers crossed!) while other new treatments, like antiPD1, are being developed. Dad started on Zel and switched to the combo after it was approved, which has been a much smoother experience for him.

Anyway, thanks everyone for always posting advice and being so supportive to each other. It's great to have a community like this to tap into. There have been a few new posters on the board with new diagnoses so maybe this update will help things seem a little less scary.

Doro

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NYKaren's picture
Replies 11
Last reply 12/16/2013 - 3:55am

Hi,

according to UPS, my Mentkist will be arriving tomorrow. So far, I've experienced almost no side-effects from the Trafinlar. 

What have those who are on the combo experienced?  Rash, diarrhea, etc?

Al, how's it going for you?  Did Dr P start you on 1.5 mg 2/day before increasing to 2mg twice daily to check your liver function?

I can't believe that I am scared about this, but I am!

thanks for all advice/experience. 

Karen

Don't Stop Believing

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ironberg's picture
Replies 5
Last reply 12/28/2013 - 12:41am

I am supposed to make an appointment with a dermatologist ...

 

what can I expect?

 

I wasnt told anything except that my Melanoma biopsy wasnt good....

 

 

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Anonymous's picture
Replies 3
Last reply 12/16/2013 - 3:41am
Replies by: Anonymous, BethA in VA, kpcollins31

I hope this post will bring some hope to those who have been diagnosed with metastic melanoma.  This is about my daughter, who was diagnosed with stage 3C melanoma, ten years ago.  She had radiation treatment for 5 weeks, but was unable to tolerate the interferon treatments, so she has had no treatments for the last ten years.  She has been NED all this time, jogs five miles a day and looks like the picture of health.  If you want to see her story, see her profile under the name of Jompy, diagnosed Dec/03.

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bradcope1's picture
Replies 3
Last reply 12/19/2013 - 8:21am
Replies by: bradcope1, Jocks wife, Anonymous

Yesterday we were told by our oncologist that although our daughters tumor in her lung is operable, the reason they recommended systemic (IL 2) over VATS was the short duration of time between initial primary 3B diagonsis and diagonsis of lung tumor in stage 4---exactly 2 years. They say 3 years is a better indicator of success. In my last conversation with the surgeon, his reasons to delay surgery were to achieve 3-6 months assurance that there was only one site. We are well within that time frame with only one tumor. We are soliciting second opinions Sloan and Sarah Cannon on this, but would be interested in hearing from anyone with experience, long or short time between reoccurance or CR.

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hdelancey23's picture
Replies 4
Last reply 12/14/2013 - 1:52pm

So my mom saw her doctor last week and he said that once the steroids that she is taking to help reduce swelling in her brain quit working then things could go fast.  She is still at home and wants to stay home as long as possible. Yesterday I learned that her pain is increasing.  Her back is hurting and her head is hurting alot.  She is having a hard time getting around and getting up to get to her morphine.  She has been taking the steroids for around four weeks now.  The doctor said that the steroids could stop working as well around 6-8 weeks.  She told us yesterday that she may be in hospice before Christmas.  It makes me sad that she is in so much pain so I really hope that she decides to start Hospice soon.  To me Hospice does not meanthat you are giving up it just means that you need extra help in managing pain.  So we will see how things go this next week.  The good news about her starting Hospice is that she won't be in so much pain and she will be closer to us so we can see her more and help out a little more.  She remains unbelievably strong and brave, she has never once given up and still hold out hope for compassionate use of the PD1 trials.  

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arthurjedi007's picture
Replies 4
Last reply 12/17/2013 - 9:39pm
Replies by: BrianP, arthurjedi007

Had my second dose of ipilimumab. Hoping it will work but trying to find the best next step if needed. So far did pallative radiation, zelboraf and now yervoy. fyi the zelboraf shrank nothing.

This link is great info of a melanoma webinar: http://melanomainternational.org/webinar/2013/09/ipilimumabpd1-combinati...

Based on the webinar it looks like the best chance for long term success would be a combo of ipilimumab for ctla-4, nivolumab for pd1 and MPDL3280A for pdL. But the best I see are 4 trials for ipi and nivo.

Anybody know a trial for all 3? Or am I missing what the best next step is?

Also how long should I give ipilimumab to work? I was thinking 10 weeks after the last dose cause that's when the drs plan to do a scan and decide what to do.

Thanks for any info.

 

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nancyg's picture
Replies 7
Last reply 1/22/2014 - 1:02pm

Hi

So my husband had his first scan after 4 doses of ipi... Out of six tumors chest/lung/nodes... 1 in node gone yea!...1 shrunk(do not know specifics yet)... Other  4 plus two on shoulder stable.... When it comes to Melanoma.. What exactly is stable ?? There is still disease ..so in my eyes there is still a problem.... NED would be nothing left correct?? So when the word stable is used... Does one move on to a different treatment... We still have to let ipi work... But I am always thinking ahead ... Just scared but VERY cautiously optimistic!!! 

Thank you in advance for any insight you could give me!

God Bless each of you on your journeys ...

Nancy

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