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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Calynda's picture
Replies 3
Last reply 7/14/2013 - 2:40pm

I originally posted back in February... That post can be found here http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

The quick version of the first post was that I was pregnant and got a spot checked out (that had been changing for almost a year, but hadn't had it looked at because I got pregnant, then had a miscarriage and needed a D&C, then got pregnant again. By the time we verified that pregnancy was sticking around, I was a month from changing insurance...

So at the point of the last post, I had a shave biopsy done and it came back as a deep malignant melanoma. They had scheduled the WLE & SLNB...

I found that thread and posted an update thinking it would bump it to the top, but it didn't, so here's what I posted on that thread:

"Re: New Here ... Calynda - (7/13/2013 - 3:39am)
I thought I'd dig up my old thread to post an update. The WLE and SLNB were successful. The margins were clear and they pulled two lymph nodes during the surgery. One of the two tested positive... At that point, we couldn't do anything more before the baby got here.

I had my baby boy on May 15th. I was induced at 37 1/2 weeks due to blood pressure. He's pretty much perfect. I had my PET scan on June 7th. There were two spots that they wanted to look at more closely, but were things that they usually wouldn't look twice at. One spot was in my spine and that turned out to be nothing. The other spot is a 6mm mass on my deltoid tendon that they aren't sure what it is. They don't think it's the cancer, but they couldn't rule it out.

I had an axillary lymph node dissection on July 5th (and still have the JP drain hanging on me). They pulled an additional 12 lymph nodes and all 12 came back negative. Yay!

Next week my baby boy has his two month check up on Monday, I have my post op appointment and hopefully have the drain removed on Tuesday, I have an orthopedic consult for the spot in my arm on Wednesday and get to drive 1.5 hours for a consult at a melanoma center on Friday. It'll be a busy week, but hopefully by the end of it, we'll have a plan of attack.

I'm feeling good. The scariest part of all this (besides the waiting) was going for the PET scan because I knew that would give us the best indication of how bad the waiting might have been.

I don't know if we can post pictures here... If we can, I'll share my little boy, Elliott Cole."

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Hello all, I am melissa and I am stage 3B, headed into the hospital on Monday for round 2 of 3 of biochemotherapy and I am wondering for those who have been through biochemotherapy, when did you loose your hair? ( interferon Alpha 2b low dose, continuous Interleukin-2, vinblastine, cisplatin and dacarbazine is the cocktail I am in for) I have a wig picked out but i dont want to buy it until i have to. is there anyone who didnt loose their hair at all? Thanks :)

<3 Melissa

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DeniseK's picture
Replies 13
Last reply 7/15/2013 - 4:26am

Hey everyone,

GREAT news today at Gamma Knife Doc.  I had my first MRI  Wednesdayt since SRS completed on June 18th.  I only had SRS on 2 of the 7 brain mets I have.  Having 7 was a shock, I only thought I had 1 but high def MRI showed 7.  Anyway I had my first infusion of IPI on the 4th of July, it had only been in my system for 6 days.  I"m also taking 1/2 dose of Z.  So the GREAT news is that all 7 of my brain mets have shrunk approximately 50%!!  

I thought, "how could that be?" I only had SRS on the 2 that were 1cm or larger.  The doctor couldn't explain it either.  He said maybe from WBR which was completed in January 2013 and they all grew in that time, or the cross rays from SRS radiation which wouldn't explain all of them shrinking because of their location, or from Ipi??  Doctor didn't think Ipi would work in 6 days but what else could explain this remarkable news??  As of today I am 7 weeks stable.  I need 8 weeks for Anti PD 1 trial, but maybe I don't need trial??  Maybe Ipi is working for me??  I go in for next MRI the day of Gamma Knife which is July 25th.  As long as there's no growth and still shrinking I would be eligible.  2nd infusion of Ipi scheduled day after gamma knife or day of.  

What do you think?  I hope that whatever is working keeps working and I can become NED/Remission!!  

All my best to you all!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Research July 11, 2013

 

 

Imatinib for Melanomas Harboring Mutationally Activated or Amplified KIT Arising on Mucosal, Acral, and Chronically Sun-Damaged Skin

J. Clin. Oncol. 2013 Jun 17;[EPub Ahead of Print], FS Hodi, CL Corless, A Giobbie-Hurder, JA Fletcher, M Zhu, A Marino-Enriquez, P Friedlander, R Gonzalez, JS Weber, TF Gajewski, SJ O'Day, KB Kim, D Lawrence, KT Flaherty, JJ Luke, FA Collichio, MS Ernstoff, MC Heinrich, C Beadling, KA Zukotynski, JT Yap, AD Van den Abbeele, GD Demetri, DE Fisher

 

 

 
TAKE-HOME MESSAGE

Results of a multicenter phase II trial showed a 50% response rate to imatinib in patients with KIT mutations. Notably, for future biomarker studies, no responses were seen in patients with KIT amplifications but no mutations.

ABSTRACT

Purpose: Amplifications and mutations in the KIT proto-oncogene in subsets of melanomas provide therapeutic opportunities.

Patients and Methods: We conducted a multicenter phase II trial of imatinib in metastatic mucosal, acral, or chronically sun-damaged (CSD) melanoma with KIT amplifications and/or mutations. Patients received imatinib 400 mg once per day or 400 mg twice per day if there was no initial response. Dose reductions were permitted for treatment-related toxicities. Additional oncogene mutation screening was performed by mass spectroscopy.

Results: Twenty-five patients were enrolled (24 evaluable). Eight patients (33%) had tumors with KIT mutations, 11 (46%) with KIT amplifications, and five (21%) with both. Median follow-up was 10.6 months (range, 3.7 to 27.1 months). Best overall response rate (BORR) was 29% (21% excluding nonconfirmed responses) with a two-stage 95% CI of 13% to 51%. BORR was significantly greater than the hypothesized null of 5% and statistically significantly different by mutation status (7 of 13 or 54% KIT mutated v 0% KIT amplified only). There were no statistical differences in rates of progression or survival by mutation status or by melanoma site. The overall disease control rate was 50% but varied significantly by KIT mutation status (77% mutated v 18% amplified). Four patients harbored pretreatment NRAS mutations, and one patient acquired increased KIT amplification after treatment.

Conclusion: Melanomas that arise on mucosal, acral, or CSD skin should be assessed for KIT mutations. Imatinib can be effective when tumors harbor KIT mutations, but not if KIT is amplified only. NRAS mutations and KIT copy number gain may be mechanisms of therapeutic resistance to imatinib.

Journal of Clinical Oncology
Imatinib for Melanomas Harboring Mutationally Activated or Amplified KIT Arising on Mucosal, Acral, and Chronically Sun-Damaged Skin
J. Clin. Oncol. 2013 Jun 17;[EPub Ahead of Print], FS Hodi, CL Corless, A Giobbie-Hurder, JA Fletcher, M Zhu, A Marino-Enriquez, P Friedlander, R Gonzalez, JS Weber, TF Gajewski, SJ O'Day, KB Kim, D Lawrence, KT Flaherty, JJ Luke, FA Collichio, MS Ernstoff, MC Heinrich, C Beadling, KA Zukotynski, JT Yap, AD Van den Abbeele, GD Demetri, DE Fisher

This abstract is available on the publisher's site.

Access this abstract now

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Replies by: rbruce, Anonymous, awillett1991, NYKaren

hi, hope this isn't old...the date is today, but the data refers only to phase I test.  Also, it shows differences in response between 10 mg. and 2 mg. doses...last I read response rate was the same.  SO confusing!  Best--Karen. (interesting that they see it as a drawback that PhaseI trial has no chemo, and to us it's a huge plus!)

Published: July 11, 2013 Updated: 12:44 p.m.

Melanoma drug holding up well after further testing

By LANDON HALL/ ORANGE COUNTY REGISTER

Merck's late-stage melanoma drug, lambrolizumab, continues to show great promise in shrinking the deadly tumors, particularly when taken at the highest dosage offered in trials, according to a study published today in the New England Journal of Medicine.

At the end of 12 weeks, the intravenous drug had shrunk tumors in 52 percent of patients when administered every two weeks, at a dosage of 10 milligrams per kilogram of body weight. Even when a lower dosage, and more time in between dosages, were taken into account, the overall tumor-response rate was 38 percent.

In most patients who showed a positive response, the results lasted beyond one year. And a dozen patients showed a "complete response," meaning their cancer was gone altogether.

Considering that melanoma is the deadliest of the skin cancers, killing some 9,000 people each year, discussing survival in terms of years and not months has cancer specialists using words they had rarely ventured to use during the previous three decades of research into the disease.

"This is monumental," said Dr. Jack Jacoub, medical oncologist at the MemorialCare Cancer Institute at Orange Coast Memorial Medical Center in Fountain Valley, who was not involved in the research. "Things look much more optimistic for this disease."

In recent years, much of scientists' energy, and research funding, has been focused on using the body's immune system to fight invading cancer cells. An FDA-approved drug called ipilimumab (brand name Yervoy) acts like a brake on a protein called CTLA-4, allowing the body's own T cells to battle cancerous melanoma tumors. Alone, it has a response rate of 10.9 percent in trials, but when maker Bristol-Myers Squibb combined it with another drug, nivolumab, the response rate jumped to 41 percent, according to data released in May.

Lambrolizumab, which used to be called MK-3475, puts the brakes on a different protein, PD-1, the same one nivolumab works on.

"Most patients think their immune system is weak and wonder why cancer is growing," said Dr. Bartosz Chmielowski, an oncologist at Ronald Reagan UCLA Medical Center who was a co-investigator for the study. "They say, 'I just want to boost my immune system.' Usually, it's not true. It's not that the immune system is weak; the cancer has found a way around the immune system.

"These results are extremely exciting and encouraging."

A subgroup in the study had taken Yervoy previously, with no improvement; in this study, they enjoyed the same response as other patients.

The most common side effects of the drug were fatigue, rash and diarrhea, but they were low-grade. One drawback of the study, which was funded by Merck, is that it was not randomized: There was no alternative therapy to compare the drug with, and no placebo.

Researchers are still seeking patients for a larger study, Chmielowski said, with a goal of enrolling 500. 

Don't Stop Believing

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NEHT2868's picture
Replies 5
Last reply 7/13/2013 - 12:52am
Replies by: DeniseK, Tina D, POW, Brendan, NYKaren

I had my scheduled brain MRI at Dana Farber this morning and i received great news from the radiation oncologist.... In his words "Remarkable". All of my lesions and tumors shrunk or disappeared! The doctors are not sure if it is due to the WBR that was completed in March, the 4 infusions of IPI that was completed in June or the 3+ weeks of Zelboraf that I am on now. 

 

Bryan

 

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Cindy VT's picture
Replies 2
Last reply 7/13/2013 - 11:00pm
Replies by: NYKaren, Fen

Had a nasty bought of pericarditis and  ended up in the hospital.  When I first got this chronic disease, my family did some research on the net and found that this is sort of a side effect of the melanoma disease. 

Its good to be home.  I hope all of you are doing well, and getting on with life.

 

Cindy VT

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mama1960's picture
Replies 2
Last reply 7/11/2013 - 12:58pm
Replies by: mama1960, POW

Doc just told me he would like to start me on this in the next couple of days. Having trouble finding info, any hints?

It is what it is.

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Linda56's picture
Replies 10
Last reply 10/23/2013 - 2:18pm

Hello,

I am new on this forum.  I'm taking Zelboraf now for about 11 months.

I would like to know if anyone has the following side effects with Zelboraf (this started about three months ago - my last scan was NED)

- extreme cold feeling with goose bumps (even when the weather is warm) 

- followed by heavy sweating within a few seconds

This happens about twenty times a day and also during the night which causes me a lot of sleepless nights.

Greetings

Linda

Linda

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Tina D's picture
Replies 12
Last reply 7/14/2013 - 9:58pm

I went for my appt in Nashville and was super pleased with the Dr and staff there. As far as we can tell I will qualify for the Merck PD1 trial. Need to have brain MRI done first ( scheduled for the 17th) then the rest of the prescreening scans and labwork the following week if the brain MRI is negative. If all goes well, I will be entering the trial around the end of the month. Merck trial has 3 arms. One PD1 2mg, one PD1 10mg, one chemo ( investigators choice).  I will be randomized into one of the 3 arms. IF I were to be randomized into chemo arm, there is a crossover allowed after 12 weeks if mel progresses during that time. I am thankful for this option and anxious to get it started.

High point of my visit to Nashville was getting to meet fellow warrior, Amy, face to face!!  :D  

I will post as I go...

As always, trusting the Lord!

Tina

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blden2186's picture
Replies 2
Last reply 7/10/2013 - 3:54pm
Replies by: Tina D, mama1960

Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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josephsli's picture
Replies 5
Last reply 5/4/2017 - 5:46pm
Replies by: Anonymous, jessann, POW, josephsli, Janner

Hi, 

I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.

Thanks

Joe

 

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