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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AllyNTAus's picture
Replies 7
Last reply 7/18/2013 - 9:51pm

Today marks 1 week since I had a large chunk of my right atrium removed to get rid of a nasty cardiac met that had popped up quite quickly. The surgery went really well, all the tumour was removed, but I had to have a pacemaker inserted. I believe there might have been some evidence seen of other mets but I have not seen any reports or talked in detail with the surgeon about this. All I know is that he has bought me some time to keep on fighting, because his words to my husband were that if we had not got this met out, I would have been dead in a few weeks, that's how much it was starting to block the chamber.

I am still recovering in hospital, having been more troubled since by some terrible gastro issues, which are being investigated. I had an irritable bowel before I came into hospital, and I think being pumped full of all sorts of drugs on a basically empty stomach just made things 100 times worse. Anyway should get some answers on this tomorrow.

Next step is to see my melanoma oncologist on Monday, and hopefully get my first infusion of Ipi. Just praying that can be given ok and that it kicks in quick!

It's been great to get support from everyone here, especially cardiac met buddy Amy
Cheers
Ally

A bad day's fishing beats a good day's work everytime

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/17/2013 - 1:51pm
Replies by: Anonymous, awillett1991, DeniseK, 5374brian, DonnaK

My mom has stage IV. Adrenal glands, lymph nodes, spleen, vaginal and brain. Initially, she was tested to see if she had the mutated Braf gene. We were told she did not, so was not a fit for zelboraf. She is almost finished with yervoy and recently started WBR. the Dr. Told us today that they did some more tests and found that one of her tests showed that she does have the braf. Her Dr.suggested that she take zelboraf along with everything else that she's doing.
Anyone experience taking yervoy, zelboraf and WBR together???

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Anonymous's picture
Replies 7
Last reply 10/12/2013 - 6:04am
Replies by: rock, Anonymous, DeniseK, ecc26, POW

Hello everyone,

This is my first post but I have been reading this bulletin board almost daily.  All of your stories and words of encourgaement have been getting me through this toughest time in my life, so thank you. 

My mom has stage IV melanoma.  She was diagnosed in April 2013.  The doctors told us that she had tumors in her lymph nodes, adrenal gland and spleen.  It took a long time for them to get results back that would show whether or not she had the mutated BRAF gene (turns out that she didn't), so there was a long gap between her being diagnosed to her starting any kind of treatment.  While she was waiting, she started spotting.  She's 60 years old so it was unusual.  She went to her gyno and was told that she also had vaginal cancer (melanoma that spread).  Her gyno said that it was very possible to have missed this in a CT scan.  Doesn't this seem odd that world renowned Dr.'s and hospitals would miss this?? 

So, we received this news and still hopeful, she started her yervoy infusions.  She has not had many side effects to the Yervoy except fatigue.  She seemed well until recently.  About 3 weeks ago, she started acting "off" (calling people the wrong names and just more confused-highly unlike her).  Turns out, she had a small brain tumor that would be easy to remove.  The surgeon took it out and claimed that he got the whole thing.  Next, it was time to decide between Gamma Knife and Cyber Knife.  Her consultation was about 2 weeks after her surgery.  She went in for the consultation and they did an MRI to find that there is another tumor that is twice the size of the 1st one. 

I'm trying to stay positive but my family feels certain that this is a sign that things are on the decline and that her cancer is highly aggresive.  She has started whole brain radiation last Thursday (5 days per week for 3 weeks) and had another on Friday.  Friday night and all day Saturday, she was in tremendous pain.  She was holding her side, vomiting and complaining of sharp pain in her ab and back.  I fear that this a result of her adrenal gland tumor.  On Sunday, the pain subsided a bit and today she's status quo.  When the pain increases and you feel it a lot more than usual, does this typically mean that the tumor has grown???

The Dr. is telling us that there's no point in doing a CT scan until 3 weeks after her last Yervoy treatment but I fear that she's dying before me.  Not knowing is the hardest part for us.  If anyone has endured a similar experience and is willing to share, I would greatly appreciate it. 

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Tina D's picture
Replies 16
Last reply 7/18/2013 - 7:50pm

Lisa, Been thinking abt you and wondering how the appt went in Nashville? I am hoping you have good news abt the trials there for him.

Tina

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5374brian's picture
Replies 3
Last reply 7/15/2013 - 9:35pm
Replies by: 5374brian, POW, Owl

Keri made a strong recovery from her intussusception surgery 9 weeks ago. We were excited to be going into the BMS trial. Merck turned us down and BMS wanted 8 weeks from the surgery and WBR. The day to start the trail Keri had acute blocking in her left leg that landed us back in Moffit for surgery. We meet with several doctors and they were torn on weather to do anything or not due to breaking up clots can cause sever hemorrhage when you have cancer. Every doctor came in one by one and stated their thoughts. We told each that we are going to treat what we can today and win. No looking back. We have decided to not dangle carrots anymore. Once Keri recovers from her surgery she had Friday night we are going with a chemotherapy. Our oncologist said lets take it one day at a time. She knows us now to well and we all laughed when our response was we will be back soon for her first treatment. We feel that a treatment is better than no treatment at all. No more waiting we are going for the Hail Mary and are going to get the touchdown. This might not be for everyone but dont let the carrots blind you. Melanoma is no longer playing fair so we are going to start firing back daily with no waiting. Good luck to everyone and remember their are no wrong decisions when fighting melanoma. 

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/18/2013 - 5:03pm
Replies by: Jaryllane, Erinmay22, POW, Anonymous, Tina D, Gene_S, awillett1991

I had my first dose of Lambrolizumab (MK 3475) about ten days ago and developed intermittent shortness of breath within two days.  Has anyone else on a clinical trial for this drug had the same side effect?  How long did it last?  Did it just resolve over time?  Was any treatment prescribed for this side effect?  Apparently it isn't a common reaction.

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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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