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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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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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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Steve in Detroit's picture
Replies 3
Last reply 6/7/2011 - 9:01pm

My ex wife has stage IV mel and was recently put on PLX 4032. The joint pain associated with taking the drug after a few days was difficult to tolerate even with lower doses. Has anyone else experienced this side effect?  If so, how did you manage the pain and was it long lasting? Any feedback would be much appreciated. Thank you! 

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Manubuzzi's picture
Replies 17
Last reply 6/7/2011 - 3:26pm

 

Greetings Everyone,
 
I hope that this message finds everyone well, or at least, on an upswing.  I am sincerely wishing you all well.  With respect to my mother, things haven't been going well.  Last week was great.  Before last week, we had had a difficult time, because she couldn't speak very well, she was confused, she couldn't remember much, and worst of all, she was aware of it.  Then, from one day to the next, she was great, and you could see it in her face that she felt so much better, and she just cried because it was a miracle.  
She remembered everything, she spoke perfectly, she had good mobility, etc.  Sadly, it didn't last long.  Saturday 4/30, we had to admit her into the hospital because she began seizing.  She was stabilized pretty quickly, but she regressed back to her "pre-miracle" state.  Due to the anti-convulsion medicine, she is extremely tired these days.  The doctors performed the necessary tests.  There was no bleeding detected in the Tomography,  and the 3 cerebral tumors are still active.  The blood test showed a low count of red and white blood cells and platelets.  She is really really weak.  Starting the day after the seizures, she was really tired and fatigued with trouble speaking and a bit confused.  We thought that it was all because of the new medication she was taking and that she would get better.  But today, it has been exactly a week that she has been taking the new meds, and each day she's more tired than the day before, she doesn't get out of bed, she sleeps practically all day.  We are completely at a loss.  We don't know if this new symptom is a consequence of the brain tumors advancing, the seizures she had, the anti-seizure medicine, or the other tumor in her liver.  Please, I'd like to know if one of you have had similar situations or if you have any help or advice about her new state.  We are so worried and desperate.
 
Thank you,
 
Manu
Son of patient

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Jamietk's picture
Replies 9
Last reply 6/7/2011 - 11:29am
Replies by: Anonymous, bcl, nicoli, marster37, KatyWI

My friend and coworker was diagnosed with breast cancer last year. She also has a history of basal cell carcinoma and is fair skinned, has light hair, and lots of freckles. On Monday (Melanoma Monday). She got an email from Celsius Tannery explaining the benefits of vitamin D in regards to preventing or preventing a recurrence of breast cancer. They were recommending tanning to help prevent breast cancer recurrence. And, get this, during the month of May, any donations made to them are going straight to their breast cancer research to learn more about the correlation with vitamind D. Of course you have to go in person to make a donation. I agree vitamin D is important. My Surgical Onc at MDA has me on it. But I get it from a pill, not a tanning booth. I am disgusted that they are promoting the use of tanning beds to prevent breast cancer. And get this, her dermatologist is doing the same thing. Her derm told her because she has had breast cancer, it would be in her best interest to tan for 10 minutes, 3 times a week, to help prevent recurrence. So let's trade one cancer for another, right? That's the answer isn't it? And although I disagree with the tanning company, why are they promoting this during Melanoma month. Wouldn't it make more sense to do it during October? Sounds to me like they're also trying to down play melanoma month since all donations in May go towards breast cancer/vitamin D research. How sad to prey on someone with one cancer to sell their business and increase their risk of another cancer.

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Hi everyone. Last week I posted that I had been for my routine checkup at a Skin clinic that has been monitoring me for some 6 years.  The GP found two suspicious moles but he said that he would wait and monitor them and see me again in 3 months and if there had been any changes.

I have been Stage IIIB/C? since 2001 wherein I had a superficial spreading melanoma in situ on my right leg.  There was no regression and the tests were done twice.  Nine months later they found melanoma with a moderate mitotic rate in one of my lymph nodes in my right groin with extracapsulary spread.  They say that a thin melanoma shouldn't spread but it is a bit too coincidental given the area.   I  had radiation treatment for four weeks.  5 years later, this skin clinic GP found a Level 4 Desmoplastic melanoma on my left arm which is a rare type and low mitotic rate and tends to recur in the same spot and not often in the lymph nodes.  He referred me onto the PA Hospital in Brisbane which surgically removed a large chunk out of my arm followed by radiation treament.    At a routine visit to the Princess Alexandra Hospital in Brisbane last week I mentioned the two moles that the GP had found.  Anyway the Registrar called in the top boss and he suggested that my GP remove it at the clinic immediately.  My test results came back today and the mole that was removed on my upper back turned out to be a Level 1 superficial spreading melanoma.   I am so grateful that I told the hospital doctors about these moles.

I have a routine appointment with the hospital at the end of the week and the GP is wanting to do further surgery himself to get better margins on the same day.  I know that it is a very thin melanoma but after my experience 11 years ago with a similar melanoma I am extremely anxious and would prefer to have the hospital take over my care and have at least some chest xrays and also  I wish I could have a sentinal node biopsy to check my lymph nodes.  I don't want to have again the wait and see attitude and lose another lymph node basin after suffering lymphoedema in my right leg with the removal of the nodes in my groin and many infections.

I would appreciate any thoughts that anyone may have.  I know this is a thin melanoma but given my history, I am feeling a little concerned about my care.

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Gene_S's picture
Replies 16
Last reply 6/7/2011 - 2:34am

Most melanoma information sources cite sun exposure as “the cause” of melanoma. In fact, the American Cancer Society states: “We do not yet know exactly what causes melanoma skin cancer.” The ACS notes that prolonged excessive sun exposure is just one of the potential risk factors for the disease.

Other risk factors:

  • Having many large or irregularly shaped moles
  • A family history of melanoma
  • Fair skin
  • Weakened immune system
  • Over the age of 50
  • Smoking

Is there something else you want to add to the possible causes of melanoma?

Best wishes,

Gene

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

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kim2712's picture
Replies 20
Last reply 6/7/2011 - 2:17am

I am very sad to say that my son Erik laid aside his battle with this insideous disease on May 22nd. There are no words to express the pain we are all feeling right now. He was truly an amazing young man right up until his last breath. Never had even a slight moment of self pity, anger or complaints. He spoke with each of his brothers, myself and his dad and said some beautiful things to us. He had his uncle organize a meal for all of the family from Outback, a tradition we have for birthdays, graduations, etc..and we all ate together in his hospital room.

He will be missed. I love you Erik..

Kim

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jblue's picture
Replies 6
Last reply 6/7/2011 - 1:44am

www.wemkea.com

Janaury 28th 1980 - June 3rd 2007

 

Our little girl  Josslyn

4 Years old

/http://postimage.org/image/1xgttm4ec/

 

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Replies by: Anonymous

First-Line Market for Melanoma Not a Lock for Bristol or RocheThe Pink Sheet Daily. 2011 Jun 6, MJ Laffler

CHICAGO Both Roche's vemurafenib and Bristol-Myers Squibb's Yervoy (ipilimumab) could have a role in front-line treatment of metastatic melanoma, following the release of two much-anticipated studies at the American Society of Clinical Oncology annual meeting June 5.

The BRIM3 study of Roche's BRAF inhibitor and the Study 024 of Bristol's CTLA-4 inhibitor were the breakthrough highlights of the showcase for oncology research- and were each warmly welcomed as breakthroughs in the treatment of metastatic melanoma.

BRIM3 showed that in patients with the BRAF V600E mutation, which occurs in roughly half of melanomas, vemurafenib produced a 63% reduction in the risk of death and a 74% reduction in the risk of progression or death compared to dacarbazine at three months, the first interim analysis of the trial. The trial was halted after that analysis, when the data safety monitoring board recommended dacarbazine patients be switched to vemurafenib. Roche recently submitted for FDA approval, based on BRIM3 and the Phase II BRIM2 trial in previously treated patients, and could see approval by year-end.

Yervoy cleared FDA in March, based on a trial (020) in the second-line setting that showed an overall survival advantage - the first time that has been shown in melanoma. Ipilimumab also has the second trial showing a survival benefit with the 024 trial when added to dacarbazine in the first-line setting. An immunotherapy that activates T cell response against the tumor by blocking CTLA-4, ipilimumab showed median overall survival of 11.2 months compared to 9.1 months for dacarbazine alone. The ipilimumab studies included patients with BRAF mutations.

After the two trials were presented at the plenary session, Kim Margolin, University of Washington, put up a slide overlaying the curves of both trials - which showed both had notable effects, but at very different times.

The selection of which agent to use "is undoubtedly going to be an increasingly complex question," Margolin said in discussing the trials' presentations. "Acquired and intrinsic resistance need to be studied over the years so we can design better combinations and sequences."

There has been great excitement about the potential to combine the two drugs; the mechanisms can work in concert and there is potential to make up for the resistance that plagues BRAF inhibition. Roche and Bristol announced the start of a combination trial on the eve of ASCO.

Which To Choose?

While vemurafenib has excellent performance in the mutation-selected population in first-line treatment, as shown by BRIM3, ipilimumab has also produced solid results that show it also has value as initial treatment, including in patients with BRAF mutations.

Margolin sees it as a "decision between starting with a drug with very rapid onset and very early evidence of anti-tumor activity but potentially limited duration of control versus starting with an agent that has a slower, mechanism-dependent onset - but may provide a plateau of long-term disease control in a substantial number of patients."

"Vemurafenib is appropriate for patients who have symptoms and need to respond fast," she concluded. "It remains to be tested whether the smaller disease burden at the time of relapse from an excellent response to vemurafenib will have an advantage for the next therapy, which could well be ipilimumab."

But, "for those patients whose tumor burden is relatively low, minimally symptomatic and whose long term goal is durable benefit and who are not in urgent need of the physical and emotional relief associated with a quick tumor regression, ipilimumab may well be the preferred choice."

Neither drug is a simple option, she noted. Both will require monitoring and management of toxicities, and compliance will be essential. And, "the definition of regression has also gotten a lot trickier with the advent of ipilimumab, and the decisions about when to offer a different therapy to patients who have regressed on ipilimumab may differ as well as [for] those with a BRAF mutant melanoma who may have the opportunity to go on vemurafenib after ipilimumab."

One thing Margolin does see as clear: there no longer is a role for dacarbazine as background therapy for ipilimumab. "In view of the increased hepatotoxicity of ipilimumab plus DTIC in combination and the strong sense that there was no therapeutic advantage to the addition of the cytotoxic agent, it would not be advisable to include this agent in the standard clinical use of ipilimumab at any dose or schedule."

Beyond the combination therapy trial, additional research is needed to guide clinical practice. The most pressing question for ipilimumab is the appropriate dose and duration, which differed between the trials, Margolin said. For vemurafenib, she sees the major need as better understanding of the resistance and escape mechanism that affects BRAF, as well as research on the role of different sequences of therapies and combinations with other drugs.

There is also strong biologic rationale for other combinations to attack melanoma; various options are already being considered within and between pharmaceutical companies. And that research has implications beyond the field of melanoma, as it becomes clear that there is real potential for synergistic effects in the treatment of cancer.

 

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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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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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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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