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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Amy Busby's picture
Replies 6
Last reply 1/24/2011 - 10:20pm

I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I'm looking at most strongly is the E7080 drug with temador, but there's only one or two spots left.  I have an appt lined up for next week to start all the papers / tests / etc.

Or I could start radiation on the left leg and possibly have hope of walking again like a normal person (wheelchair and walker bound now).

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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Kim K's picture
Replies 13
Last reply 9/24/2011 - 8:20am

I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

I also had to make sure they don't pull the "we can't give you your results over the phone and the Dr. is gone for the day" crap.  My doc was shocked when he heard they wouldn't tell me my results over the phone.  We already had a deal that it is fine to do so.  I mean it's not like because I am in medicine therefore I am being a pain, but rather, if there was something I would want to know everything PRIOR to my appt. so I can spend the time constructively developing a game plan that made sense.  I could spend the time more productively and have my questions lined up and research done PRIOR to my appt.  It didn't help that the receptionist at this particular branch office isn't the brightest crayon in the box.....

I will recheck next week to ensure that it is the first thing that shows up is my Dr.'s consent to read me my results over the phone and or fax them to me as soon as they are reported.  Damn stupid beuracracy.  My doc did get a chuckle out of my Mela-sucka-noma shirt.  (The one that BG has).

I also ran into my lung surgeon who seemed a little suprised I was still doing well.  If only I could be a fly on the wall at the next tumor board meeting.....

I also can't wait for my new Sole 35 eliptical machine.  Now that I will be around for a while more, I guess I need to get my butt back in shape.  Jade my 5 y/o daughter insists Mommy is only fluffy and not fat.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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LynnLuc's picture
Replies 9
Last reply 1/25/2011 - 5:05pm
Replies by: LynnLuc, filbert, MARTERWAG, Rocklove, Tracy Chicago, Anonymous

I am wanting to go back to work...dx with stage 4 melanoma-I have been NED for nearly 9 months . I am still in the trial here at Moffitt.  I will need 2 more days off for treatment for the trial...Am I crazy for wanting to go back to work? I know if I do go back I will lose my state disability ( from state job in North Dakota) as well as my SSDI. If I get reoccurrence I will never get my North Dakota disability back as I am in Florida now...I wonder how hard it will be and how long it would take to get the SSDI started again...anyone know if it would be easier the second time around?

I feel like I can't sit around and do nothing like I am waiting to die. Yes I know I felt that way in the beginning, but now I really want to move forward and hope and pray for the best.

Another question...should I tell them at my interview about my diagnosis? Or wait and tell my direct manager/supervisor. I know the law says they can't discriminate...but in this  area unemployment is 15% and afraid they can pick and choose and trump up a reason not to hire me if they don't like my dx...I do not want to claim disabled ...I want  to be hired because of my skills and experience...not because of my dx...

anybody want to throw some thoughts out there?? Thanks, Lynn ( have interview next Wednesday...)

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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carol b's picture
Replies 7
Last reply 1/23/2011 - 11:33am

my pet scans just showed only the tumors we can see and feel..NO mets anwhere eles in my body. THANK GOD FOR THAT

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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nickmac56's picture
Replies 18
Last reply 9/17/2012 - 11:26pm

My wife is Stage 4 with tumors on lung being monitored as part of her clinical trial on Ipi.  Has had a number of subcutaneous tumors removed.  Is getting her 12 week scan next Tuesday, but we know Ipi hasn't worked, yet, because minimally she has some new ones on her back and stomach.  We suppose it's possible that there may be some effect between week 12 and week 16 scan - anyone else seen reductions during this timeframe?  Our oncologist is terrific and there is great care here in Seattle, but we are running out of options.  One thing we apparently will try next week is a permanent regimen of Tamoxofin  - to shut down her hormone system because in the past there has been some weak linkage to hormones and melanoma - any one else gone this route?  Lastly, assuming Ipi failure, has anyone then gone on to IL-2?  She started off with Leukine which got her onto the clinical trial when she had a reaction to it.

thanks for any help or suggestions,  Nick

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

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Anonymous's picture
Replies 2
Last reply 1/27/2011 - 6:59am

Hi,

 

I am new to the MPIP site & been reading everything. I am stage 3, unrescetable Braf positive. My doctor says I qualify for Braf or Braf/MEK combo trial.

Would like to know for anyone what kind of side effectss and timeframe for a response (tumor shrinkage) have you experienced.

Also, if you get "remission"/no more tumors do you still have to kep taking the drugs forever???

I am scared and hope to learn more from you so that I can go into the trial with realistic expectations.

Any feedback on your experience would be greatly appreciated.

God Bless you all

Lena

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molly's picture
Replies 2
Last reply 1/22/2011 - 10:07am
Replies by: molly, Anonymous

Does anyone know of a board like this for Prostate Cancer?

Thank you so much,

molly

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jlevang's picture
Replies 2
Last reply 1/28/2013 - 10:36pm
Replies by: mkt, Carver

I'm new to this forum, and new to the world of melanoma. I was diagnosed with a stage 2a melanoma on my thigh in Dec. and had the wide excision and sentinel node biopsy done on 12/31. The nodes came back negative, which was a huge relief, and now I'm trying to educate myself on what I should be doing to prevent reoccurences. Recovery is mostly going well, except for a large lump that developed around the incision near the groin where the lymph nodes came out. There is one firm lump at the top of the incision, and then a larger one running most of the length of the 5" incision. The surgeon said it is likely a seroma, and that he could aspirate and drain it, but that they often come back. He recommends letting it go away on its own, which he said can take weeks or months. I'm hoping someone has gone through this, and has advice, or information about how long it takes, what to do, etc.  I'm having a hard time finding much information about seromas, especially in the groin area. Sounds like they are more common in the armpits. It's not really painful just uncomfortable. Thanks.

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Shelby - MRF's picture
Replies 8
Last reply 1/21/2011 - 9:03pm

Can you spare a few minutes to take a survey?

Synovate Healthcare is a medical and healthcare market research firm.  They are conducting a market research project and would like to ask for your assistance.  This is an opportunity to offer your insight and perspective regarding treatment for metastatic melanoma.  To complete the survey, you will first be asked a few qualifying questions.  In return for completing the 25 minute survey, Synovate Healthcare is offering $35 for your time and a donation to the MRF.

Synovate Healthcare will keep all of your answers completely confidential and results will only be reported as a whole – not as individual responses.  Please note that when you click over to the survey, you will be redirected to the Synovate Healthcare site.  The survey is done online.

If you’ve been diagnosed with melanoma and are interested in participating, please use this link:

https://mr01.equesta2.net/mrIWeb/mrIWeb.dll?I.Project=U55J8EMAILADD&i.user2=Advocacy1 

Once you have completed the survey, there will be a page to specify where you would like your honoraria sent. Your participation is enormously helpful! 

Shelby - MRF

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Nebr78's picture
Replies 3
Last reply 1/21/2011 - 11:39pm
Replies by: SusanE, Lori C, sharmon

i am waiting to evaluate 2 golf ball size lumps on my face and chest.  I had 7-8 strong doses of radiation and if they begin to shrink He will give them some more zaps..Strong chemo is out of the question as I have serious heart disease.

What I am having trouble facing is if the lumps don't shrink, there is nothing more that can be done.

How long might it be before the tumors kill me?  And will it be done slow or fast.?

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Nebr78's picture
Replies 1
Last reply 1/20/2011 - 8:40pm
Replies by: W.

Has anyone had any bumps, lumps on their body and had them treated with radiation?   If so, did it work.   I have 2 lumps (tumors), one on side of face and another in front of right arm pit.  They gave me 7-8 strong radiation treatments a few days ago. Nothing is new except the one on the face hurts like the devil unless i take pain pills.   Is Melanoma resistant to Radiation you think.     Retired in Nebraska

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Linda J's picture
Replies 1
Last reply 1/20/2011 - 9:21pm
Replies by: King

So the new plan is to get at the ones in my brain with WBR starting Monday. That will last for 5 days and then I'll be doing carbo and taxol until I can get on braf trial that also targets the brain. That study is coming to Canada in about six weeks.
I'm wondering if other people have had experience with carbo and taxol.
I believe that God has a plan of healing in my life. There is still hope in the midst of what seems to be extreme darkness night now.
Linda J

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Anonymous's picture
Anonymous
Replies 0

Interesting article in the Guardian about what they are finding in the BRAF trials in the UK.

http://www.dailymail.co.uk/health/article-1348793/Skin-cancer-A-pill-fight-disease-year-

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Kim K's picture
Replies 7
Last reply 1/21/2011 - 9:53am

I guess it is about time finally (after prodding my docs).  Brain MRI, PET/CT whole body, CT chest without and with contrast.  For some reason they only wanted to CT the chest, as if mel dosen't like to go to the liver, GI tract or anywhere else in the abdomen/pelvis.  At least I won't have to drink the nasty contrast this time.  I am getting over a stomach bug and don't want to revisit cherry flavored chalk.  I didn't push too hard on the abdo. CT figuring that if anything was there, the PET/CT should pick it up.

My main goal for this visit is to get a scanning schedule down on paper so all my docs are on the same page.

Take care all!

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Hawaii Bob's picture
Replies 1
Last reply 1/20/2011 - 5:57am
Replies by: Kim K

This past summer saw a revolution in melanoma therapy. Patients whose melanoma lesions contain a mutation in the BRAF gene were successfully treated with a BRAF-specific inhibitor, PLX4032. Reports of the drug trial described shrinking tumors and improved health. Yet seven months after therapy began the tumors returned and resumed growing. Now, scientists at The Wistar Institute explain why: the tumor learns to signal around the blocked gene by adjusting its molecular wiring. They also show how to overcome resistance by simultaneously targeting multiple signaling pathways.

The researchers see this as further evidence that some cancers must be treated with multiple targeted drugs at the outset of treatment. Their findings are published in the December 14 issue of the journal Cancer Cell.

"The evidence suggests that targeting mutant BRAF can kill cancer cells, but it is not enough by itself to finish off melanoma," said Meenhard Herlyn, D.V.M., D.Sc., director of The Wistar Institute Melanoma Research Center and leader of Wistar's Molecular and Cellular Oncogenesis program. "The good news is that drugs are being developed to work in combination with BRAF inhibitors, which our data clearly shows is our best option if we intend to beat advanced melanoma."

Melanoma is the deadliest, most aggressive form of skin cancer. While surgical treatment of early melanoma leads to 90 percent cure rates, advanced melanoma is notoriously resistant to chemotherapy and has a tendency to metastasize, or spread, throughout the body. According to the World Health Organization, cases of the disease continue to rise, which has helped spur research into therapies such as BRAF inhibitors.

To study how melanoma responds to BRAF inhibitors, the Herlyn lab took melanoma cells with the BRAF mutation and tested them against a variety of anti-mutant BRAF drugs. When exposed to the drugs, the cells died off dramatically only to grow back again. In fact, cells that became resistant to one type of BRAF drug became resistant to all of them, which suggests that the cells were biochemically "rewired" in such a way that they no longer needed BRAF to form tumors.

"Cells are complex machines that work, essentially, through chains of biochemical reactions that we refer to as signaling pathways," said Jessie Villanueva, Ph.D., senior author on the study and staff scientist in the Herlyn laboratory. "Knocking out mutant BRAF shuts a major pathway down, but if some cells can use an alternate pathway, then they can survive."

To find out which alternate pathways the drug-resistant cells use, Villanueva and her colleagues looked for signs of increased activation among proteins along the pathways BRAF uses, as well as other pathways.

Their hunt turned up two paths that worked together to aid survival. First, they found that resistant cells used a protein similar to BRAF to carry the signal down the chain. Second, they found these cells received an additional boost from the IGF-1 receptor, a protein that sits on the surface of cells and sends signals that prevent cells from being killed. The resistant cells re-route the signal around BRAF by switching to an alternate protein (CRAF or ARAF), which promotes tumor cell growth, while IGF-1R signaling promotes survival of the resistant cells.

Fortunately, there are a number compounds in clinical development that could block signals along both these pathways. So-called MEK inhibitors target a protein along the same pathway as BRAF, and IGF-1 receptor inhibitors (and inhibitors of P13K, a protein that can be activated by the IGF-1 receptor pathway) block the cancer-enabling survival signal. To test these drug combinations in the BRAF-inhibitor resistant cells, the Herlyn laboratory used a tool they developed to simulate the real-world environment of human cells: 3-D melanoma tumor spheroids. Their 3-D tissue cultures allow melanoma cells to grow in all directions, much like a new melanoma tumor would grow after metastasis. As predicted, a combination of these two inhibitors killed BRAF-resistant melanoma cells in the Wistar 3-D model.

Moreover, the Herlyn laboratory confirmed in tissue samples from patients in the PLX4032 trial taken both before treatment and after they developed resistance that an increased expression of the IGF-1 receptor is associated with resistance to BRAF inhibitors. None of the laboratory-generated cell lines or the post-relapse patient's tumor samples analyzed had new mutations in the BRAF, NRAS, or c-Kit genes.

Additionally, the researchers noted an association between the loss of a tumor suppressor called PTEN, and resistance to BRAF inhibitors in melanoma cell lines. The scientists found that the relapsed tumor of one patient included in the study lost the PTEN gene, even though it was present before treatment. These findings suggest that loss of PTEN could be an additional way that melanoma cells gain resistance to BRAF inhibitors. The Wistar group continues to investigate these and other mechanisms of resistance, as they expect that several will likely arise given the heterogeneous nature of melanoma.

"Tumors are efficient engines of evolution they are going to find a way around most treatments, so we want to kill all the malignant cells from the very beginning," said Villanueva. "By targeting both pathways simultaneously you hit these cells with two punches from which they cannot recover."

"If you do this at the outset of treatment, we reason, it will prevent melanoma survival and hopefully improve patient outcomes," Villanueva added.

Support for this study was provided by grants from the National Cancer Institute and the Dr. Miriam and Sheldon G. Adelson Medical Research Foundation.

Wistar co-authors in this study include Adina Vultur, Ph.D.; John T. Lee, Ph.D.; Rajasekharan Somasundaram, Ph.D.; Mizuho Fukunaga-Kalabis, M.D., Ph.D.; Angela K. Cipolla; James E. Hayden; and Ademi E. Santiago-Walker, Ph.D. University of Pennsylvania School of Medicine co-authors include Katherine L. Nathanson, M.D.; Xiaowei Xu, M.D., Ph.D.; Phyllis A. Gimotty, Ph.D.; Bradley Wubbenhorst; Richard Letrero; Kurt D'Andrea; and Anitha Pushparajan. Other authors included Grant A. McArthur, M.B., B.S., Ph.D.; and Damien Kee, MBBS, FRACP, of the Peter MacCallum Cancer Centre in Victoria, Australia; Jeffrey A. Sosman, M.D., and Kimberly Dahlman Brown of the Vanderbilt University Medical Center; and Sylvie Laquerre, Ph.D., of GlaxoSmithKline's division of Oncology Biology in Collegeville, Pa.

Source: Wistar Institute

 

Article URL: http://www.medicalnewstoday.com/articles/211315.php

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