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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ncdaniel's picture
Replies 6
Last reply 12/14/2013 - 9:51am

My wife is currently undergoing chemo with three different chemo drugs and I was wondering if anyone has had any success with them  or reduction in tumor size.?  She is getting  Vinblastine (Velban) , Cisplaatin, and TEmozlomide (temodar). She has already gone through many of the treatments, IL-2 , Yervoy ( developed severe colitis after 1 treatment) Gamma knife and WBR. She was rejected for BMS PD-1 trial due to yervoy side effects and at NIH for TIL implant when more tumors were found in small intestine and a new brain spot. She currently has tumors on both lungs adrenal gland, small intestine, Back and one spot on the brain again. Still fighting and going for radiation on one lung tumor and back this week since the lung tumor is restricting her airway. Just wondering if anyone has had this chemo with any help or success. Any words of wisdom for other treatment would be appericated.

Trust in God - Live one day at a time

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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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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 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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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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Sandy11's picture
Replies 10
Last reply 12/12/2013 - 2:31am

Hi, my husband is stage 4 and finished Ipi treatment 4 months ago. He is still experiencing significant fatigue.  Has anyone had this happen for this length of time? Thyroid and other tests came out fine. On a good note.. have some positive results.. awaiting more tests later this month. Thanks to all the warriors. I look forward to your replies.   Sandy

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sbrooks90's picture
Replies 13
Last reply 12/11/2013 - 11:26am
Replies by: sbrooks90, Anonymous, mitchwendy, Momrn5, POW, JoshF

Hi Everyone,

Just thought id log in and post an update to let you guys know how everything is going. Last time I posted, I had gone through a CLND of the groin after a positive sentinel node was found. CLND resulted in no further evidence of disease. In my last post, I reached out to the community for advice on adjuvant treatment recommendations. Treatments available to me here in Canada were:

1) Interferon Alpha 2b

2) Clinical Trial - Ipi vs. Interferon (Randomized study)

3) Clinical Trial - Vemurafenib vs. Placebo (Randomized study)

I decided that none of those appealed to me and chose to forgo the standard all together. I did however choose to visit a naturopath and changed my diet as well as add many Vitamins to it. I feel better than ever right now and am living life to the fullest. (took me a good 3 months to recover from the CLND)

Thank you to everyone on this board who provided me with opinions, I took those into consideration when deciding what treatment path to follow/not follow.

One thing I will leave for debate..... Here in Canada, we do not do "preventative scanning". As many of you mention on here, you go for 6 month PET/CT Scans etc. Here in Canada, you get scanned ONLY if you are having symptoms of metastatic disease or have palpable lymph nodes. (alot of this has to do with the fact that we have free health care and cannot afford to do that) I have been thinking maybe for peace of mind.... drive 1hr to Buffalo and pay to have a scan done.

 

Anyway thats my piece, Take care!

 

Samuel

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Julie in SoCal's picture
Replies 5
Last reply 12/11/2013 - 8:14am

Dear Friends,

After almost 5 years of NED status, Mel is back.  Both of the biopsied funk have come back positive for mel.

I'm possibly getting ahead of myself, as I haven't had scans yet, but what are the treatment options for Stage 3C resected?  Are there any? 

Anyone have any experience with this?

Thank you Friends,

Julie

 

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FrankG's picture
Replies 6
Last reply 12/11/2013 - 3:42am
Replies by: Kim K, FrankG, Janner, Anonymous

I had a stage I melanoma in 2001.  I have had 8 skin biopsies since July, including two basal cells, two benign lesions, and four moles that have been described to me as, "A 9, with 1 as totally benign and 10 as melanoma."  My dermatologist is at Johns Hopkins and really knows his stuff.  I have every confidence in him. Upon reading the path report for the last biopsy, I sent a message to my dermatologist, who replied with the following:

"I am very perplexed by the pathology results every time I do a biopsy on you.  The reason I have not contacted you yet is because I am asking around pathologists and other physicians if they have come across someone like you, meaning someone who had a melanoma and whose nevi show similar findings to you: lichenoid inflammation, regression changes, melanocyte nesting, intraepidermal atypia and so forth.
This seems to be the case every time I sample a mole on you.
"

The "and so forth includes things like nuclear enlargement, prominent nucleoli, dermal fibrosis, numerous colloid bodies, and prominent pigment incontinence.

The same day I received a call from the resident who did the biopsy with him.  He told me that they had spoken to a number of pathologists and dermatologists at Johns Hoplins and had not found one who had had a similar case. They were particularly concerned that there had been immune responses to each of these dysplastic nevi, which he said does not normally occur.  Subsequently they did a literature seach and found that all cases reported in the literature of immune system responses to non-melanoma nevi were associated with unidentified melanoma elsewhere in the body.

I have another appointment to discuss nest steps.

Has anyne had experience or does anyone have knowledge that could be helpful?

 

Thanks.

 

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bradcope1's picture
Replies 26
Last reply 12/11/2013 - 3:31am
Replies by: Kim K, Draino, bradcope1, awillett1991, POW, JoshF, Anonymous, Mat, Richard_K

My daughter is stage 4 and currently is enrolled in the phase 4 Zelboraf / IL-2 trial. Last week we were excited to receive confirmation that the single tumor in her lung is shrinking on the Zelboraf arm. After six months of coughing, Z stopped it in 2-3 weeks. We need the collective wisdom of this community now as we are getting cold feet about the IL-2 arm which is scheduled for the week before and the week after Christmas. On this site, I have heard IL-2 referred to as a last resort. I have also seen the 6% of full responders believing in it and the 94% that didn't respond calling the experience a nightmare. Her oncologist says it is the first resort, because of your age and good health. On paper the trial makes sense, as we know that the Zelboraf response is not durable and a combo approach is needed to keep it down. It is our understanding that surgery is an option for her, but her Oncs sold us on going the systemic route from the beginning. Not sure if another reputable melanoma clinic would necessarily agree. Any thoughts on this trial, or other directions with the newer drugs we should consider for the combo treatment? 

Thanks in advance. 

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Kim K's picture
Replies 7
Last reply 12/11/2013 - 3:10am
Replies by: Kim K, Anonymous, Charlie S, Janner, POW

Just wondering if this function is working and no one ever goes there anymore, or if it just hasn't been made fully functional yet.

I love the ability to upload your own avatar, and the expanded defaults.  BTW, what is a marquee and the 1000 credits thing?

I really miss all the people who used to chat.  It has gotten easeir and faster to enter the room thankfully.  Same for returning to the main BB after responding to a post.  My computer doesn't lock up for an hour after I hit the submit button.

TY.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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JoshF's picture
Replies 7
Last reply 12/10/2013 - 11:39pm
Replies by: Anonymous, BrianP, jogo, awillett1991, aldakota22

I saw doc today before my final ipi infusion on Wednesday. Thyroid function is off so I'm going on thyroid meds starting tomorrow. Onc said this would be forever and a common side effect of ipi. She felt this is most likely an immune response. I have no idea....I've felt really good since treatment started. I've had some ongoing fatigue, few dry itchy patches of skin...mostly on ears and cramping day of and day after infusion. Outside of that, I can't complain at all. Anyone else have similar side effect with thyroid? Didn't seem like big deal at all. My thought was...if drug is working and I can get past mel.....then I'm good. 

Anyway...looking forward to last treatment...scan....Xmas break and then get ready to check in for IL-2 right after New Year which I understand is no treat. I'll do what I can to beat the beast down!!!! Praying for success and well wishes for all melanoma warriors out there.

 

Josh

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

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Anonymous's picture
Replies 4
Last reply 12/10/2013 - 11:39pm
Replies by: Anonymous, Cooper

We have been told that Dr Infante is really good. Love to hear your thoughts

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lydiareedtaylor's picture
Replies 4
Last reply 12/10/2013 - 11:38pm
Replies by: Anonymous, Charlie S, delora, kpcollins31

hi, hope everyone is feeling well! Need some advice. I began my treatment in June...was just in the hospital.."bad batch", never been sooo scared. Doc has me off treatment for 2weeks.....my labs now are "normal", scans show "Cancer free". my question is, DO I PUT MY BODY BACK INTO THE TREATMENT NIGHTMARE? If i stay off, how long roughly will it take my body to bounce back? Am still very week, still some side effects.  Thanks, for your time & GOOD HEALTH TO US ALL, lydia

lydiareedtaylor

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dnovak's picture
Replies 3
Last reply 12/10/2013 - 11:37pm
Replies by: Anonymous, BrianP

I see this as awesome news and a sign of whats to come for all types of cancers.  I just wish they would hurry the hell up!!!

http://news.yahoo.com/gene-therapy-scores-big-wins-against-blood-cancers-160100028.html

dave novak, father to Amelia 8 year old IIIb

 

 

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