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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Joan C's picture
Replies 18
Last reply 6/10/2011 - 10:13pm

This has probably been posted before, but I just saw it.  A very very good video warning teens of melanoma, check it out:

 

http://www.thatvideosite.com/video/dear_16yearold_me

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Lisa13's picture
Replies 18
Last reply 6/9/2011 - 1:10pm

Well, the results today wern't good news - the nodules in my lungs are melanoma. That being said, my onc. was very optimistic and never for a moment made me feel like I was doomed. I have low bulk disease in my lungs which is growing slowly. I'm going to go into the IL-21 trial versus decarbazine as this is my first line of treatment. Of course if this doesn't work, we are going straight into ipi.  I was so happy he didn't make me feel like I had months to live as he said that stats were old and that there were so many new drugs for melanoma that were prolonging people's lives.  I have no choice other to be positive and focused and pray that one of these treatments will get rid of these nodules.

I would love to hear of other people's stories who've had numerous lung nodules. I must believe that these can shrink and disappear and I know it's been possible for many people.

Lisa

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

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Sherron's picture
Replies 12
Last reply 6/10/2011 - 1:26pm

My computer is down at home, so cannot get into facebook....Just worrying about Eric & Jill.

Take Care,

Sherron, wife to Jim FOREVER

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Hi All,

Interesting reading in TIME magazine.  Dr Oz on cover talking about his scare with colon cancer and how he was a "lousy patient" - not following instructions pre-test, cancel/resched follow up tests, anxiety over results, telling family and friends...Although it was not mel, still touched on what we go through and put a sense of "normalcy" to us as patients with our fears.

Also in this issue was a brief commentary on one man's journey through "Scanxiety".  Pretty cool how he describes his experience.

 It is available online.  www.time.com

Have a great day!

Laurie

Do not fear tomorrow, God is already there.

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Rendergirl's picture
Replies 17
Last reply 6/12/2011 - 9:31am

When I was first diagnosed a few months ago, my mom and sister didn't want me coming onto this site because they thought I was just scaring myself with other people's horror stories. I fought them on it and continued coming because I can't fight unless I have info, and I got info and more from all of you. I wouldn't have gotten through my past three surgeries withoutt the people here. BUT.... a little part of what they were afraid of was true. Most days are good since I am NED now after my 3rd surgery, but I do have a tumor behind my knee and I have my 4th surgery on that in a few weeks and the chance it might be cancer is scaring me. But like I said, most days are fine. Then there are those days that I read about person after person who's journals I follow are in ICU or in the hospital and not doing good. And someone else posts a tribute video on YouTube... it just hits me like a hammber blow.

How do you keep from freaking out when it seems all the fighting and the tears and the pain is for nothing? When you feel like no matter what happens, this might really kill you? How do you stop from scaring yourself? How do you stop your heart from breaking over everyone else's battles?

Just having a bad day I guess. Honestly, I know I should be so happy, I'm NED. There are so many that are SO worse off. Maybe I'm just too empathic... It just doesn't seem fair. I hate melanoma. No one deserves this.

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ShariC's picture
Replies 17
Last reply 6/8/2011 - 6:06pm

Sorry I've been out.  Remember I had the distended stomach....its Mel.  All over.  "too numerous to count".  Doctor Gonzoles at UCCC said he needed to get the tumor growth under control before Yervoy so he had me do a round of DTIC and Vinplastine and Cistabline.  Did that over the weekend.  Its been a real strange trip.  Honestly at more peace than I thought I would be.  I'm preparing for the worse, my doc is trying everything he can to extend.  He said he's seen worse?!  I don't see how. 

Sorry for such a post...but, I wanted to let you know.  I'll try to update occassionally...hopefully the chemo beats it back a bit and I can get some comfort.  But, it manifested quickly...very quickly...my body just couldn't handle the tumor load its probably had for months..and it just reached a threshold.  Strange.  Strange indeed.  - Love you all - Shari

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/8/2011 - 11:53am
Replies by: Anonymous, Carol Taylor

Hi Carol,

 

I visit MPIP daily and read your posts. I so appreciate your prayers. You give everyone comfort.  I rarely post but I feel compelled to ask for your prayers.

I am having surgery on Thursday & very scared. This is my 3rd surgery in 3 years. I pray that God will guide my surgeons hand & there will be no complications, as well as, obtaining clear margins.

Carol, any prayer you can say for me will be sincerely appreciated.

Thank you for praying for all of us.

Tiffany

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EmilyandMike's picture
Replies 2
Last reply 6/14/2011 - 12:16pm
Replies by: Lauri England, MariaH

 

We have seen all of the “news” about the "new" melanoma drugs at the ASCO conference (not really new news to most of us).  You can see a full list of the melanoma abstracts here: http://abstract.asco.org/CatAbstView_102_121_AA.html

There were a few abstracts about interferon that covered the debate for Stage 3 patients (1 year vs 1 month, 1 month vs observation, long term PegIFN vs observation) and you might be interested to read them... although I am not sure that it clarifies much:

http://abstract.asco.org/AbstView_102_83141.html

EORTC 18991 phase III trial: Long-term adjuvant pegylated interferon-α2b (PEG-IFN) versus observation in resected stage III melanoma: Long-term results at 7.6-years follow-up.

Conclusions:Long-term PEG-IFN therapy in stage III melanoma had a significant and sustained impact on RFS (recurrence free survival), but not on DMFS (distant met free survival) and OS (overall survival). Patients with only microscopic nodal involvement (sentinel node positive) seemed to have a greater benefit of PEG-IFN in terms of RFS, and marginally regarding DMFS and OS. In the smaller subgroup of pts with sentinel node positive and with ulcerated melanoma, the benefit seemed to be the most striking and consistent regarding all endpoints, and was maintained at long term follow-up. These effects have been observed in 2 consecutive EORTC trials (18952 and 18991) involving 2,644 patients.

http://abstract.asco.org/AbstView_102_77947.html

Randomized phase III trial of high-dose interferon alfa-2b (HDI) for 4 weeks induction only in patients with intermediate- and high-risk melanoma (Intergroup trial E 1697)

Conclusions: Adjuvant HDI induction with only 4 weeks therapy neither improved RFS nor OS over observation for patients with intermediate and high-risk melanoma. This trial supports the importance of HDI treatment duration and argues that the approved 1 year Interferon regimen of induction followed by maintenance remains the standard of care for pts with T4N0 or node positive disease.

http://abstract.asco.org/AbstView_102_79446.html

A randomized phase II trial of 1 month versus 1 year of adjuvant high-dose interferon alfa-2b in high-risk acral melanoma patients.
Conclusions: The preliminary results of this study demonstrated no statistically significance were detected in RFS between the 4 weeks and 1 year regimen for all the high-risk population, while a 1-year regimen showed a significant clinical benefit in patients with stage IIIb-IIIc Acral Melanoma or nodal metastases ≥3. Further survival data are needed for long-term follow-up.

http://abstract.asco.org/AbstView_102_80361.html

Intensified high-dose intravenous interferon alpha 2b (IFNa2b) for adjuvant treatment of stage III melanoma: A randomized phase III Italian Melanoma Intergroup (IMI) trial

Conclusions: Our data show that a shorter but more intensive HDI regimen is more feasible and not more toxic than conventional HDI.

http://abstract.asco.org/AbstView_102_80167.html

Health-related quality of life (HRQOL) in the Nordic randomized trial of adjuvant intermediate-dose interferon alfa-2b in high-risk melanoma.
Conclusions: The results of this study revealed significant effects of IFN alfa-2b treatment on HRQOL. The impact on HRQOL is important to consider as part of the decision process on whether or not to use adjuvant Interferon.

Our experience with melanoma: http://emandmichael.wordpress.com/

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Lisa13's picture
Replies 12
Last reply 6/8/2011 - 7:45am

Yesterday I had the follow-up scan to a previous one I had on April 28th.  I'll be finding out what's going on with the nodules on my lungs as well as any other areas in my body. My CT scan was nervewracking considering just before they pumped me full of iodine, they told me they're taking a good look at my liver!  At that moment, I could feel the anxiety flowing through my veins as quickly as the iodine. Thanks buddy for putting that image in my head!

I've had a really bad stomach these past couple of weeks and my acid reflux and hiatal hernia have kicked in big time. Sometimes my hiatal hernia gives me some breathing problems which of course makes me think of this melanoma growing rapidly in my lungs in the past month. I really hope to God that this is a scare or they tell me there is no change and even better, nothing anywhere else. I don't even know if I'm mentally prepared to hear the words (stage 4) yet and they probably wouldn't either until these nodules got big enough to biopsy. I keep trying to remind myself that my blood work 2 weeks ago was normal, so that has to be a good thing.  I also keep reading peoples stories of their scares and lung nodules being nothing or not growing, etc, etc, but then you come on here and there's terrible news which freaks me out even more.

I've had a few break downs today. I look out the window on this beautiful, sunny, hot day reminded of how much I loved these days. But now, I feel I can't even enjoy the summer with my daughter because I'm petrified of being in the sun because it's the reason I'm here. I hate what is happening and I'm so angry that I'm going through this (even though I'm not alone). I want to know my results so badly, but at the same time, I'm terrified.

I will definately need some wine tonite and probably an ativan before my appointment bright and early.

P.S.  I'm so thankful that all these drugs are becoming available and likely a dozen more to follow. 

Lisa

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

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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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mom3girlsFL's picture
Replies 14
Last reply 12/1/2011 - 8:34pm

Good Morning,

Had 3mth onc appt yesterday.  Expecting to sched PET scan as we discussed doing every 6mths, last PET was Nov 2010 (clear).  Onc says insurance will not pay for PET unless disease evident (?) and had clear CT of chest, abdomen and pelvis in april 2011.  Long story short - positive node removed last year.  PET showed more. More nodes removed, several w/mel.  Went on interferon after additional node removal.  PET after showed new node.  Had "radical" node removal, several nodes again w/mel.  Off interferon, PET in November 2010 clear, CT chest, abdomen, pelvis clear in April 2011.

Come home and discuss w/hubby.  All is well...until this morning.  Hub wakes me up at 6am says he's been up since 11pm thinking about all this. " Is insurance the only reason not doing PET?  Let's see if we can get one ourselves...Don't you understand what the PET does? I know you had CT, but what about your brain?..." and on, and on, and on...

Please, please don't be mad at hubby.  After I settled with his bombardment I truly understand he is coming from a place of love (although he had an odd way of showing it sometimes).  I told him to call the onc.  Don't know what else to say.  We all deal w/our battles each morning when we decide to think about it all day or go on with the beautiful gift of another day we have.

I hope I am not being ignorant and just assuming if the onc is okay, then I am okay.  On a side bar - this is not my original onc it is a 2nd opinion onc after the 1st onc didn't know what to do after my very first node "lit up" on a PET - at the persistence of my hubby we went to the 2nd onc for our treatment plan.  Basically, my hubby "saved my life" so I do value his opinion.

Thanks for your input.  Hope I didn't get too confusing for you.

Laurie

Do not fear tomorrow, God is already there.

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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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nickmac56's picture
Replies 7
Last reply 6/9/2011 - 8:45am

My wife just had two tumors removed today, one on her stomach and one on her back. That's a total of 6 skin tumors removed (plus two brain tumors). She has two more skin tumors they are holding off on removing (or resecting if you want to get all technical) as potential harvest for a clinical trial using adapative cell therapy, if she can make it that long. She still has three lung tumors. She has added two 4 inch scars and they cut out hunks the size of half a deck of cards. She is amazing, stoic and strong. and tonight resting comfortably with ice packs and taking ibuprofen  - while 3 twentysomething young men and one 54 year old man jump and scream at the Stanley Cup playoffs. 

I've been bombarded with emails over the last two days from well meaning friends and aquaintences asking me if I had seen the announcements about the new melanoma drugs. Of course, if they had read my blog they would have known I knew about it and that she had tried and failed one and the other one she doesn't have the positive mutation. So I copy and past my polite reply. 

All that to say, that the front line of the melanoma battle is often surgery, or tumor management as I call it. As many surgeries as one needs to to get to a time and place where a drug can work. So I salute my wife and all the other people out there battling melanoma with this old fashioned, often unappreciated treatment.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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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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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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