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
TracyLee's picture
Replies 10
Last reply 6/6/2011 - 4:05pm

Hi Y'all,

I had my first Ipi a week ago. Tonight I found a new node, on the opposite side of my neck.  My "bad" side has the string of nodes, which seem to be swelling slightly but are not painful.

I've not had any swollen nodes or issues on this side, and just had an MRI of my neck 2 weeks ago. It came back "ok" for this side.

Has anyone else done Ipi, then had swelling in nodes that were previously clear? I'm trying hard not to panic and am praying that it means the Ipi is working on a potential future problem area.

Thanks,

TracyLee

Stage IV 5/16/11 - scalp/neck/lungs

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

Login or register to post replies.

dburtone's picture
Replies 2
Last reply 6/6/2011 - 1:53pm
Replies by: bcl, nicoli

I am wondering if anyone knows if sunless self-tanners are safe for Melanoma patients?  I was looking at Jane iredale's new self-tanner called "Tantasia".  Jane Iredale makes very safe products with natural ingredients, no preservatives, or parabens, so I thought it might be safe for me to use.  It also has no phenoxyethanol which is supposed to make my vitiligo worse, so I thought it would be a good product.  Then I looked at the description which said that it "contains Acetyl Tyrosine and Monk's Pepper which is said to stimulate the melanocytes that produce melanin."

My question is, could the stimulation of the melanocytes to produce melanin, bring on more melanoma?  If anyone out there is a medical professional and can help answer this I would really appreciate it.

Thanks so much

Dawn

P.S. - Here is the whole paragraph that talks about key ingredients:

"Tantasia has a different approach to self tanning. Instead of using the Dihydroxyacetone everyone else use’s; this product uses 3 specific complexes to give an even golden tan. Let me give a brief run down on these 3 complexes.

  • The first combination is of Acetyl Tyrosine and Monk’s Pepper. This complex is said to stimulate the melanocytes that produce melanin. The Monk’s Pepper leads to melanin formation; independent of sun exposure. The Acetyl Tyrosine accelerates the melanin synthesis reaction.
  • Copper Gluconate which is an additional source of tyrosine delivery which increases a more even color.
  • Dihydroxyacetone (DHA) which is bonded to a natural vegetable amino acid compound. This DHA has been buffered and buffering means that they are able to use far less DHA than most tanning products and it will go on smoother, with less streaking and giving an overall longer lasting, deeper and more even tan because of the extra supply of amino acids at the skin level."
  •  

Login or register to post replies.

We got the awful news today that Don does not qualify for the GSK BRAF/MEK trial we had been waiting weeks with baited breath for. Even though he turned out to be positive for the mutation, the cancer has spread so rapidly that his liver function is not high enough to meet qualifications.

Doctor Lawrence admitted Don to the hospital on Wednesday to better manage his pain as well as get his testing done for the trial (we had been in the emergency room that morning because Don was having a new bout of pain in his lower right ribcage area that wasn't being controlled by his pain medications)...it looks like he'll be staying for at least a little while longer. The doctor is now recommending chemotherapy as a last ditch effort to slow down the wild growth and spread to attempt to get his liver function under better control with an eye to possibly get him into the Compassionate Use PLX4032 trial which will be opening in this area soon. He wants Don to start the Chemo Sunday morning. We will both be speaking with Dr. Lawrence in the morning about all the details.

I could *really* use some prayers/support/hope right now. Having a hard time tonight being able to absorb yet *another* bout of extraordinary bad luck.

Thanks to you all. You really are a Godsend!

Michelle, wife of Don, Stage IV 

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

Login or register to post replies.

Hi everyone,

On June 4, 2000, I became officially Stage IV with a lung met.  It was resected, and I was blissfully NED until this February, when I was diagnosed with multiple bone mets, a couple of sub-q's, and  a nodule in the lung.

I won't kid you, the news was a bummer - after all those years I was thinking MM was in the past, and that something else was going to be the end of me.

But I got my act together, and contacted my old guru Dr. O'Day (now at the Angeles Clinic in LA).  After a lot of poking and hoop jumping, I qualified for the BRAF/MEK combo trial.  I'm now starting my 4th week, with very few side effects.  The funny thing is that my bone met symptoms, as well as my sub-q's, have disappeared - even before I started the trial.  I'm taking this as good news - I'll get scans in 4 weeks, hopefully these will confirm the disease is in retreat.

I used to post annually on my anniversary date, not to brag, just to tell people that this is surviveable.  I'm doing the same this year, and hope to keep on doing it year after year!

Best wishes to all,

Harry

Too ugly to die!

Login or register to post replies.

http://www.cnn.com/2011/HEALTH/06/05/melanoma.drugs/index.html?eref=mrss_igoogle_cnn

Two new drugs extend survival for melanoma patients

By Miriam Falco, CNN cnnAuthor = "By Miriam Falco, CNN";
if(location.hostname.indexOf( 'edition.' ) > -1) {document.write('June 5, 2011 -- Updated 2023 GMT (0423 HKT)');} else {document.write('June 5, 2011 4:23 p.m. EDT');}June 5, 2011 4:23 p.m. EDT

 

 

Chicago (CNN) -- For the first time, patients with the deadliest form of skin cancer have two new treatment options that prolong survival, according to new research presented at a cancer conference in Chicago on Sunday.

One drug specifically targets a mutated gene that tells a cancer cell to grow, the other boosts a patient's immune system in the fight against the disease. Both drugs cause tumors to shrink and prolong survival for patients with melanoma that has spread to other parts of the body, but neither is a cure.

"This is an unprecedented time of clinical options -- it is truly practice-changing," said Dr. Lynn Schuchter, who heads the Melanoma Center at the University of Pennsylvania and is not involved with the research.

MayoClinic: Find out more about melanoma

One study presented at the American Society of Clinical Oncology's (ASCO) conference on Sunday focused on the experimental drug vemurafenib. About half of all melanoma patients have a mutated BRAF gene. This mutation tells the cell to continue to grow.

"It's like the on-switch is stuck," said Dr. Paul Chapman, from the Memorial Sloan-Kettering Center in New York and lead author of the study. Vemurafenib blocks the mutated gene, which kills the cancer cell and shrinks tumors.

Researchers compared this new drug, which comes in pill form, to the only FDA-approved chemotherapy drug for melanoma, dacarbazine: It has been used to treat melanoma patients since 1975, but is only effective in about 10% of patients.

Nearly 90% benefited from this new targeted drug, Schuchter said.

In a large, phase 3 study involving 675 people worldwide, patients on vemurafenib did much better than those on chemotherapy. Forty-eight percent of patients on vemurafenib had substantial tumor shrinkage that lasted for more than a month, compared to 5.5% of patients in the chemotherapy group.

Those taking vemurafenib had a 63% reduced risk of death compared to those on chemo. Patients on vemurafenib saw the drug work within 72 hours and 84% of the patients were still alive after six months, compared with 64% of patients getting dacarbazine.

"These are truly striking results" ASCO president Dr. George Sledge said.

Patient advocates like Tim Turnham, executive director of the Melanoma Research Foundation, are thrilled because "the incidence of melanoma is going up all over the world and the treatment landscape has been terrible."

Drugs that treat breast cancer found to prevent it, too

Sledge and other cancer experts are confident that based on these study results, vemurafenib will almost certainly will get FDA approval this year.

A second study showed that the recently approved drug Ipilimumab, sold under the name Yervoy, also extends survival for melanoma patients with advanced disease.

It doesn't target a specific part of the cell. Instead, it stimulates the patient's immune system to allow it to better fight the cancer. Patients with and without the BRAF mutation were eligible to participate.

Among 502 patients enrolled in this clinical trial, half were given Yervoy plus dacarbazine and the other half were given a placebo and chemotherapy.

"Twenty-one percent of (the Yervoy) population was alive after three years," lead study author Dr. Jedd Wolchok said, compared to 12% who got the placebo and chemo. Wolchok, also an oncologist from the Memorial Sloan-Kettering Cancer Center, said patients taking Yervoy saw the drug work for them for 19 months, compared to only eight months in patients in the chemo group.

Schuchter says melanoma patients are celebrating this moment because there are now two good treatment options for patients, when there really were none before.

"I've been doing this for 25 years, and we've not had drugs that extended survival. That is what is so remarkable here," Schuchter said.

While patients taking vemurafenib do very well, Schuchter said the drug stops working after about nine or 10 months. But in many cases that are nine or 10 months they otherwise would not have had.

Yervoy takes a while to work, and some patients may not have that time, study author Chapman said. He also points out that both drugs do have side effects so patients have to be monitored.

Doctors and researchers will now explore how to best use these drugs -- give one before the other, or simultaneously.

Wolchok says manufacturers of both drugs (Genentech's vemurafenib and Bristol-Myers Squibb's Yervoy), which also funded these studies, have agreed to work with researchers to study how these drugs are tolerated by patients when taken together, giving doctors even more possible treatment options. This is very unusual in the world of drug development, he said.

According to the American Cancer Society, melanoma is one of the most common cancers in young adults today. More than 68,000 people were diagnosed with melanoma last year and about 8,700 died.

Not all melanomas can be prevented, but limiting exposure to strong sunlight and other sources of UV light like tanning beds can significantly reduce the risk of getting this very deadly cancer.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

NYKaren's picture
Replies 12
Last reply 6/5/2011 - 10:33pm

Hi everyone.  I'm Karen, and I'm new here.  I've been reading some posts, and while I hate the reason I'm here, I'm so glad I found this site.

I posted my profile, but I did want to let you all know that Ipi is approved for Stage III melanoma if it has metastasized and not responded to earlier treatment.  Maybe not all hospitals/docs are using it for stage III, but luckily mine, Dr. Jedd Wolchuk (whom I love) at Sloan Kettering, is.

I has my first infusion 10 days ago.  They stressed not to expect side-effects till after 2nd infusion.  My melanoma is on my temple and it seems to have been arrested w/radiation, but seems to be somewhat worse now.  I called Dr. W's office and they said that with Ipi it often gets worse before it gets better. 

In my limited experience, i have learned one VERY important lession.  We are our own advocates.  When I had my recurrence, my first doc was much too laid-back  about it for my tastes.  He said "I cant find your path report, you'll have to come back in a few days."  I said no way, and I had my derm's office fax it again right then.  He still wasn't so reactive, even though it was spreading so fast on my face that I was in a state of panic.   The next morning I called his sec'y and requested all my records.  Let me tell you, the old me would have been too scared for that, but those days are long over!   It was not easy to get into Sloan, but others have not had that problem, and once I found the right doc, I've been so much happier. 

I'm very anxious to hear the reports from the conference that's going on now...I'm gonna quiz Dr. W. when i see him for my next infusion on the 16.  Oh yeah, I saw that the bill for $45,000 has been submitted to BC/BS, can't wait to see what they pay!

Thanks for reading.

Don't Stop Believing

Login or register to post replies.

Hi Y'all,

I had my first Ipi a week ago. Tonight I found a new node, on the opposite side of my neck.  My "bad" side has the string of nodes, which seem to be swelling slightly but are not painful.

I've not had any swollen nodes or issues on this side, and just had an MRI of my neck 2 weeks ago. It came back "ok" for this side.

Has anyone else done Ipi, then had swelling in nodes that were previously clear? I'm trying hard not to panic and am praying that it means the Ipi is working on a potential future problem area.

Thanks,

TracyLee

Stage IV 5/16/11 - scalp/neck/lungs

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

Login or register to post replies.

Lisa13's picture
Replies 5
Last reply 6/5/2011 - 8:53pm

Monday is my follow-up scan to see if any of those tiny nodules on my lungs have changed. I'm hoping they havn't since no change can be a good thing, especially when they're too small to tell what they are. That being said, 2 weeks ago I completed my blood work which was normal - my LDH was 181 and on April 28th it was 166.  Is this still normal?  Can having a normal LDH mean that melanoma isn't spreading or present in large amounts?  Obviously I'm thinking a million different things right now due to scanxiety, so any explanation would be helpful.

I really hope like alot of you that these nodules won't be there, won't have grown and if still there, will continue to not change for years.  If the plan changes, then I deal with it.

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 6/5/2011 - 6:26pm
Replies by: Vermont_Donna, ValinMtl, King, Terra, Anonymous

Anyone heard how both these 2 wonderful ladies are doing.

Iam a little concerned because they have not posted  for a long time.

Jamie

Login or register to post replies.

ShariC's picture
Replies 16
Last reply 6/5/2011 - 4:34pm

Hi All - I'm afraid I have a type of post that is fairly common and I'm just needing to sound off and express my anxiety to a group of people that can understand and empathize.  I'm Stage IIIc.  Finished biochem last February.  Over the past 10 days my stomach has become increasingly bloated and uncomfortable.  I changed the way I ate, rested differently, exercised, rested, etc...  Anything to alleviate the issue.  Its getting worse.  I would now characterize my abdomen as distended and its increasingly uncomfortable.  I called my oncologist and his nurse recommended I expedite my PET scan.  It is tomorrow AM.  I hope to have results by tomorrow afternoon.

I'm a wreck.  I KNOW many, many of you have been through this...and it doesn't matter how much you prepare ... its NEVER a good day to find out your cancer is back. 

MM is so random and variable.  Some people get years ... some months.  At any given time I try to tell myself to be happy with whatever time I do get. 

Maybe its not back, maybe this is an over-reaction? 

Thanks for listening.  - Shari

Login or register to post replies.

Gene_S's picture
Replies 9
Last reply 6/5/2011 - 4:12pm
Replies by: Jim M., Melanoma Mom, Lisa13, Anonymous

Just wondering what your thoughts are about taking "Selenium" to help boost your immune system?

It seems that since this "beast" called melanoma came into my life, my full time job is now to find a cure for it!  :-(

My research shows that melanoma patients need to take Selenium, if so how much a day?

What are your thoughts?

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

stanscott's picture
Replies 1
Last reply 6/5/2011 - 2:02pm
Replies by: Carol Taylor

I did see the Derm on Thur. Found a Basal cell on shoulder and possible mm on leg will know more in a week or so. Thank you for encouraging me to go. Now seeing the group at Wake Forest Baptist.

Stan

Music is the river that navigates history.

Login or register to post replies.

chenrydh's picture
Replies 6
Last reply 6/5/2011 - 9:56am
Replies by: chenrydh, Gene_S, Vermont_Donna, nickmac56, Anonymous

HI there - I will be finishing up my 4th infusion of IPI on the 8th of June, then will be following up with the scans over the next several weeks.  If the IPI has worked does anyone have any idea how long it would be inbetween time in order for me to do it again?  I've been told my other patients, as well as my drs. that the IPI has shown to have worked far after the last infusion so wasn't sure if it would be given again or I'd go into a wait and see pattern.  With melanoma and how fast it spreads I just am concerned about the length of time especially since I have mets in my brain and lung.  Thanks and to all who are dealing with this terrible disease stay strong and know that so many people are praying for you.  <3  

With God all things are possible. Never, never, never give up.

Login or register to post replies.

Becky's picture
Replies 8
Last reply 6/5/2011 - 8:42am

Ben had a Pet scan yesterday and my mom scanxiety was in full force. He got the news today, all clear :)

Kepp fighting, everybody

 

Becky

Mom to Ben, age 22. Oral melanoma (tongue) stage 3, one year of interferon. 23 months NED

Login or register to post replies.

Pages