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.

Expand/ Collapse Topic
 
Replies By
View Topic
Article in Press

BRAF inhibitor activity in V600R metastatic melanoma

published online 12 December 2012.
Corrected Proof

Abstract 

Activating mutations in the BRAF gene occur in approximately 50% of melanomas. More than 70% of BRAF mutations are V600E and 10–30% are V600K. Potent and selective BRAF inhibitors have demonstrated significant clinical benefits in patients with V600E and V600K BRAF-mutated melanoma. V600R mutations constitute approximately 3–7% of all BRAF mutations and the activity of BRAF inhibitors in patients with this mutation is unknown. We have treated 45 patients with V600 mutated melanoma including patients with V600R mutation between July 2011 and October 2012 with the selective BRAF inhibitor dabrafenib (n=43) or vemurafenib (n=2) via a compassionate access programme. The overall response rate was 50% for the whole population with a progression-free survival of 5.5months. Five objective responses were seen in six assessable patients with V600R BRAF mutation (n=9). Our experience suggests that patients with V600R BRAF mutations can be treated successfully with oral BRAF inhibitors, and molecular diagnostic assays should include detection of this type of mutation.

Keywords: Metastatic melanoma, V600E, V600R, BRAF inhibitor, Vemurafenib, Dabrafenib

Login or register to post replies.

Mike N's picture
Replies 4
Last reply 1/5/2013 - 4:09pm
Replies by: JerryfromFauq, Anonymous, Reneezd, gabsound

Just checking in with this supportive community on my 12th year NED anniversary.

Want to give some hope to folks that may have recently been diagnosed. My mm was 0.85mm punch biopsy and 0.95 when removed WLE.

My prayers go out to everyone here that is affected by this beast. And a sincere thank you for all the help and support extended to me by this community.

Best,

Mike N

Minneapolis

It's about today

Login or register to post replies.

eastbay123's picture
Replies 8
Last reply 10/27/2013 - 9:37am
Replies by: Anonymous, JerryfromFauq, JTiernan, eastbay123, Linny

It is near the center and it seems too small to be an injury. (It is less about 1/8")

My doctor is sending me to a specialist for diagnosis. How concerned should I be? Is there any way to tell by looking? Can anyone here offer insight or suggestion?

If they do a biopsy won't that spread cells that might be really bad to spread??

I am very concerned as there is cancer in my family.

 

Thanks,

David

 

 

Login or register to post replies.

Kimberly Duncan Watts's picture
Replies 6
Last reply 1/8/2013 - 11:39am

Hey friends, I had scans today and want seafood tonight...anything that says I shouldn't? My scans were traumatic today. The power port put in last April after my surgery has always been questionable, but today we tried for two hours to get a blood draw. No go. And I have fragile veins that got blown three times...almost had to have scans without contrast, but finally got a vein. I liked my first port better that was put in 2008. I criied a lot. The stress of my port is now greater than the melanoma.... Any words of wisdom are appreciated.

I can do all things through Christ who strengthens me.

Login or register to post replies.

JTiernan's picture
Replies 6
Last reply 1/14/2013 - 10:56am
Replies by: JTiernan, Frannie55, Josh

Has anyone ever had a melanoma mass in their knee?

Thanks!

Jean Tiernan

Login or register to post replies.

Is anyone familiar with Dr. John Pitcher Othopaedic Surgeon at UV Miami Sylvestor? They have found a mass possible pigmented villonodular synovitis.

I am a stage four survivor.

I am having a consult with him tomorrow.

Thanks!!

Jean Tiernan

Login or register to post replies.

o2bcheri's picture
Replies 2
Last reply 1/2/2013 - 6:33pm
Replies by: o2bcheri, Anonymous

 

HAPPY NEW YEAR EVERYONE!!!

I'm posting again about Cellect as some new posts have come up that you might find interesting... I know most of you here do not believe..

but.. i am so sure that this stuff works that i want to keep positng with the hope that even one of you will try this Cellect..

I have recently starting taking it myself.. i do not have cancer.. but i have noticed some amazing things already.. in only 5 days... my gums are no longer bleeding and the pockets feel much smaller... my energy is better and i sleep like a baby... 

below is a post from Lisa Arnel.. who some of you read about in her blog which i posted a few weeks ago.  she has melanoma... metastisized all over.. she would have been gone long ago if not for Cellect...

Happy new year to all my cellect friends!!!!!! Most importantly happy new year to Fred and Lora for all your selflessness and amazing work you do. If it wasn't for cellect i wouldn't be here to see another year!!! So thankful and fortunate for you Fred eichhorn!!  (lisa arnel)

 

Thank you so much, Fred! You are an amazing person and Cellect is an amazing product! I'm so grateful that my mom found you. I did as you suggested - 2 scoops a day plus Olive Leaf with Colostrum. In one month my eye pressure went from 28 to 17. The abscesses in two teeth are gone (I kept asking the dentist, "are you sure there's not even a remnant of infection?"). The melanoma-in-situ that was on my arm - gone! My energy is back and I feel great! Happy New Year! )P.S. - I love the chocolate Cellect - mix it with water before I go to bed, put it in icebox, & the next day stir in some almond milk - it's delicious and very filling)

 

Over the past weekend, we thought Andy was going to die from his lung cancer. He was having trouble breathing, doctors first thought it was pneumonia because he was diagnosed with lung cancer, Lippo Sarcoma, this past Memorial Day. Because Andy refused all treatments and only took Cellect, they told him he would die before the summer was out. Here we are approaching Christmas. He was having a difficult time catching his breath, we honestly thought it was the end for Andy, but he was still grateful because he lived longer than the doctors offered with their treatments. The doctor called in hospice care at the hospital. We were all upset because this was the end. 

Sunday after night, Andy was heaving and heaving, the doctors wanted to up the morphine to cause him to relax and die. While the doctors were trying to set up the equipment, Andy was having trouble breathing, and was choking, a team came in to clear the airway, then they saw something in his throat. Some tools, I do not know what they are, like long thin clamps, they pulled it out.

All of a sudden Andy started to inhale so deeply like he just finished a marathon, trying to catch his breath. But he was smiling and happy, it was not a struggle, after a few minutes, he was able to calm down and breathe more normally. The doctor said that he was breathing normal but that there was a lot of blood but pulse, and blood pressure were closer to normal.

They canceled the morphine and started to help him calm down. The oxygen levels improved and everything was improving a little at a time. The doctor said that it appeared to him that the lung tumor had started to die and detached from the lung area and Andy’s body was trying to get it out. Three hours later, Andy was able to eat a regular meal. 

This is similar to what happened in the past after he had a massage therapy. The doctors at that time thought it was coincidence. There is no way it was coincidence, now they are listening. 

Monday was a PET scan to see how the tumor was in his lung. Andy did not have any stress or pain. During the pet scan, the tech asked Andy many times if he had a tumor in the ling because he could not find it. When the tech went to older test results, he was able to see it. He would not comment at all to Andy. We did not care what the scan said because Andy was feeling great and was only interested in going home. 

As soon as the doctor came in, the tech almost ran to him, they disappeared. 20 minutes later, the doctor came back and told Andy that the PET scan does not show anything. The pathology confirmed that the tumor that came out was cancerous, and because there is no evidence in this new scan, he said it is safe to say that the tumor he coughed out was that same tumor. He said he never heard of anything like that before.

When Andy asked if he was cancer free, the doctor grabbed a chair and sat down and said that he has no idea what happened, but he did say that the cancer that came out was from the lung. When he saw all that blood, his first instinct was that the cancer grew massively and that the blood was a bad thing. Now he believes that the blood was caused because the cancerous tumor was dying and tore away from the walls in the lung, causing some blood and healed afterwards. He said he never saw that before. 

He said that he is being cautious, he wants to wait a few months to see what happens. Andy said that because the doctors told him during the Memorial Day weekend that he would be dead in a few months, he already passed his given time, so, he is patient and will wait.

Andy is still weak in his legs and arms because he was in bed so much. The doctor said that because there is no evidence, he was not sure what to do, so Andy said he wanted to go home. We brought Andy home last night. He woke up this morning and kept taking big deep breaths and now wants to challenge anyone. I think he is happy. He wanted pancakes and bacon with lots of maple syrup. He drank Tetley tea called British blend. He said that is Fred’s favorite. I don’t know if that is true. 

This morning, he declared that he no longer has cancer and will not return to his doctor for any tests. I think when he calms down, he will probably agree to non-evasive tests. I told him that he has to show the world that he is a survivor and that he will need to take those tests to validate it. 

This is a wonderful Christmas. To think that Andy was within minutes of getting a lethal amount of morphine to be put down like a dog. And here his cancer is out of his body. I wonder how many people had coughed up blood or tumor particles, or had pneumonia like symptoms and their doctors thought that it was increased cancer. Now we saw first-hand that it was the cancer breaking down and the body trying to get rid of it.

I hope that this update puts a smile on your face just like our entire family is smiling, it is the best Christmas present we could have ever received. Thank you Laurie and Fred, you saved our family  (Aaron Michaelson)

i have been following success stories for over a year with this Cellect... have had personal dealings with Fred Eichorn who is the creator of Cellect... he is a WONDERFUL person... he cares beyond as does his entire staff... 

reach for the sky....!!!

love to all of you!!

 

Michele

 

Login or register to post replies.

lunchlady's picture
Replies 13
Last reply 1/6/2013 - 10:33pm

Can anyone tell me what their experience is regarding the cost of a consultation appointment at MD Anderson?  My husbands insurance will not normally cover any services outside of Kansas.  I worked with his insurance and they granted a "Benefit Exception" for one appointment so he can consult a melanoma specialist at MD Anderson for a second opinion.  I was told by the agent that was attempting to set up the appointment that one consultation appointment cost $40,000!  With his insurance we would have to pay $4,000.  Any info anyone can give me is appreciated.

One day at a time.

Login or register to post replies.

audgator's picture
Replies 4
Last reply 1/3/2013 - 3:13pm
Replies by: Linny, audgator, lou2

Have any of my fellow PD-1 test subjects been on Azithromycin?  Has anyone been told not to take it?  I am asking because I am fighting some type of URI/cold and that is what was prescribed. In the precautions it said to check with your doctor if you are on cancer meds.  Can't do that on News Years Day.  Thanks for any opinions.  Dan

Login or register to post replies.

BillMFl's picture
Replies 3
Last reply 12/31/2012 - 10:31pm
Replies by: aldakota22, Janner, CarolA

Been away a long time.  Now 12 years out from first mm,  4 years from second. NED.  End of my nose chopped off and replaced this year due to deep BCC that did not present on surface.  Over 40 BCC and SCC  positive biopsies since it all began. Turned 70 this year but still trim and slim, just a little slower, haha. You newbies stay strong, think positive and kick ass!!!


Login or register to post replies.

Been away a long time.  Now 12 years out from first mm,  4 years from second. NED.  End of my nose chopped off and replaced this year due to deep BCC that did not present on surface.  Over 40 BCC and SCC  positive biopsies since it all began. Turned 70 this year but still trim and slim, just a little slower, haha. You newbies stay strong, think positive and kick ass!!!


Login or register to post replies.

Kellie-T's picture
Replies 5
Last reply 1/2/2013 - 12:53pm
Replies by: Anonymous, dellriol, awillett1991, NYKaren

I've been taking Zelboraf and in February it will be the 1-year anniversary of taking the drug. I'm NED since May and hope to stay that way.  I'm on 6 pills per day and I can say for the most part the side effects have been tolerable. For every reaction there has been something availabe to combat it. The joint pain comes and goes however my knees and shoulders seem to get the brunt of it. I've taken the steriod dose pack only twice and unfortunately advil, and aleve don't help. My onc has prescribed 10mg daily of prednisone. I've yet to fill it. I have a pretty high pain tolerance so of course I'm toughing it out. I was wondering if anyone else is taking the daily steriod and do you have any side effects from it? I'm very leary of taking even more pills. She also told me to take Prilosec with it because it can cause stomach issues. Doesn't make much sense to me.

Thanks

Life is not by accident. Make every minute count.

Login or register to post replies.

ladyelaine's picture
Replies 4
Last reply 12/30/2012 - 4:42pm

Elaine Welch, Lancaster County, PA. 67 years old.
I had a mole on my left fore arm removed in 1976, tissue was lost, not tested. Within a year a bunch of freckles appeared where the mole was removed. When you're covered with freckles a few more didn't matter.
Over the next 7 years the area turned all colors. In 1984 I had a wide resection about the size of an orange off my forearm with plastic surgery. It was a Clarke Level 4. I had no nodes removed, no treatment, followed up for 3 years, no further issues.
In 2006 after years of heavy cycles I had endometrial cancer (uterus lining) and a hysterectomy. Nodes clear, no further treatments, no further issues.
This November 12, went to optometrist, needed new glasses. She found a tumor in my left eye. She wanted to wait 3 months and recheck. I went to my family doctor and he could easily see the tumor with a naked eye.
So now I will start this new journey on January 2 with an appointment at Penn State Hershey Medical Center.
So now you know what I know!
BTW, my father had his eye removed due to melanoma in 1970 at the age of 63. No further treatment. He died 12 years later from liver mets.
My big goal now is seeing my 50th wedding anniversary July 5, 2013.

Que Sera Sera

Login or register to post replies.

koveleskie's picture
Replies 9
Last reply 1/2/2013 - 5:50pm

My sister has been on Zel for about 2 months, stage VI.   Tumors shrunk, but pain and fatigue have been bad.  She resists taking pain med and I can't get her to understand the importance of being out of pain to help her body heal.  She believes that no matter what, she is supposed to feel pain even tho dr's have told her they can control the pain if she follows regimen.  She has looked at this site but says she doesn't see where anyone else is having to take pain meds.  She is now on a pain patch but is still having a lot of pain.  Are others of you having much pain and how do you deal with it?  Thanks for any input.

Login or register to post replies.

lou2's picture
Replies 14
Last reply 1/3/2013 - 8:24am

Can anyone recommend a melanoma specialist here?  I have an appointment with a doc in a practice that is described as skin cancer specialists, but seeing the background of the doc does not make me feel sure that this is really the best choice.

Login or register to post replies.

Pages