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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Gene_S's picture
Replies 1
Last reply 6/6/2011 - 10:24pm
Replies by: LynnLuc
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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

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

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

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I found out I was in remission in September 2010.  Yet I am experiencing all the side effects of active disease.

I have been in and out of the hospital more since remission than before.  Could it be the little bugger is in there somewhere wreaking havoc without a scan that has detected it? 

I'm somewhere between bewildered and being afraid and being sure I still have active disease and its just hasn't been found.

Believe me when I say I would like to do a cartwheel but my body seems to continue to go slower and I continue to get sick. 

Does anyone have any words of wisdom.

 

CKasper Stage IIIa , a veteran of 27 years with this disease a 27 year warrior

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/7/2011 - 10:35pm

Hi Val,

I've been thinking about how you are doing. I am so saddened by Sharyn leaving us. It breaks my heart.

How are you doing on IPI?

Hoping you are doing well. Please give us an update we care about you.

Jan

 

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Replies by: CLPrice31

Hi everyone,

I had my first infusion on May 26th.  Since this past Friday, I've had diarrhea, sometimes worse than others, along with cramping and bloating.

(warning, this is descriptive)

At one point on Friday, it was liquid, but that was the only time.  Interestingly, my son said he had it on Friday too.

Over the weekend, it's been about 2 - 4 times a day--after the second time I've been taking two Immodium and that takes care of it for several hours.

today I thought it was gone, but it came back twice so far.

I called Dr. Wolchuk's office, and his nurse called him in Chicago.  She called me back and said to continue w/the Immodium and to call them tomorrow or Wednesday.

Has anyone else had this problem so early on?  I'm still hoping it's a virus being that my son had it too on Friday,

Many thanks,

Karen

Don't Stop Believing

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emilypen's picture
Replies 9
Last reply 6/7/2011 - 10:48pm

Hi all,

So my husband has been on the PLX 4032 (BRAF inhibitor) trial since the end of March and it's already stopped working. We knew there was a good chance of this as he had been on the P13k/MEK trial before this one and the doctors were'nt sure if that would reduce the efficancy of PLX.

So now we're on to next steps..... pretty sure our choices will be Yervoy ( IPI) , IL-2 or Bio chemo. Wondering what you all think and if you had the choice which one would you do?

My husband is Stage IV since May 2010 and has multiple bone mets, 2 or 3 soft tissue tumours and 1 lung nodule ( 7mm). He's also 39 yrs old, and still working part time....

 

Any way , would love to hear your thoughts...

 

thanks,

Emily

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lilred75's picture
Replies 14
Last reply 6/13/2011 - 7:17pm

I have not been on here for a long time, but I still recognize many of the posters, and what a wonderful thing that is! For those who don't know me, I am a stage IV survivor since March 2006. I am now 35, and have been NED since October 2007. Despite all the odds, I recently gave birth to a beautiful baby girl, who will be 6 months on June 15. She is our miracle baby, for so many reasons, and she and my husband are my world.

 

I am so excited to hear about all the latest news regarding new drugs that show great promise in fighting melanoma. I had scans last week, and will find out tomorrow if my NED streak has continued. I am more nervous than usual because my doctor often calls me prior to my appt. to tell me all is good (yes he is awesome!), and I have not heard from him yet. He specifically tells me every time that him not calling does not mean bad news, he just may be out of town or unavailable to get the results. But it's hard not to worry!

So hello to all the 'vets' that may remember me, and to all the 'newbies' that are battling the beast. No matter what results I get tomorrow, I am here to say that miracles do happen, and don't ever give up!

 

Sincerely,

Alison

Miracles can happen to those who believe in them.

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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"

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shellebrownies's picture
Replies 21
Last reply 6/8/2011 - 6:25am

Don came home from Mass. General on Thursday afternoon after 8 days in the hospital. He finally had his pain managed properly, thank goodness, albeit with a slew of meds to take (whatever works...). We were told that we needed to keep a special eye out for fevers in the coming week while Don's white blood cell counts were low from the Chemo. 

When the nurse was taking out his IV line, we noticed the area was pink and swollen. She gave Don a heating pack for the road and said it should be fine after that.

It wasn't.

The next afternoon, Don was sporting a temp between 101.7 and 102.3. He was home a whole 24 hours. I called Ellen, Dr. Lawrence's nurse, who told us to go to our local ER for evaluation (Dr. L. is in Chicago for the conference). They got him on a broad spectrum antibiotic right away and admitted him (Should I tell you guys about the hissy I threw when I discovered they were going to put my immuno-compromised husband in a shared room? Or the fit I had on his nurse about making sure he got his medicines on time? She took a half hour just to find us after we got to his new private room, 20 more minutes to locate a bag of saline to hang, and another 20 minutes to get him 2 Tylenol for his fever...I am NOT exaggerating...).

We heard from the doctor from their Infectious Disease department today that Don has a Staph infection, quite possibly from the IV site. We find out tomorrow whether it's MRSA or not. 

Yes, really. I kid you not.

Now they will keep him for at least a couple more days (several more days if it's MRSA) and he will probably have to have IV antibiotics daily for a couple weeks after that at home. 

Un-frickin-believable.

Honestly, how sad is it when I tell you that I was relieved to hear it was only a Staph infection? I mean, with our luck, I was just waiting to hear it was the plague or smallpox or some such thing that hardly anyone gets anymore...

 

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

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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

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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

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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."
  •  

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