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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Snickers60's picture
Replies 11
Last reply 6/29/2012 - 8:55pm

Are you guys taking it and HOW MUCH ?

 

Thanks

Nancy (devoted wife of 3X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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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 6
Last reply 6/29/2012 - 6:03am
Replies by: JerryfromFauq, LynnLuc, Anonymous

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

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/29/2012 - 1:22am
Replies by: FormerCaregiver

Hi Everyone:

My dad starting taking Zelboraf at the standard dose on March 19, 2012, his Melanoma was quite advanced..  He was a responder to the treatment with tumour reduction in lungs, spleen, spine.  In May he started to get external regrowth on his neck.  Will get the neck growth radiated. Waiting to get his CT scan results back this week.  Speculating that it will likely show tumour growth and regression.

I know lots of people are in the same boat in terms of running into the resistance issue.  Just hoping to hear some ideas in terms of a Plan B of attack.

MRF is the place I keep coming back to for snippets of hope.

Thanks,

Adrian

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Mrsgkr's picture
Replies 1
Last reply 6/28/2012 - 8:59pm
Replies by: AllyNTAus

For those that are taking Zelboraf and have skin mets, have you noticed a difference in them? If so, how long did it take before you noticed anything different?

My husband has been on Zelboraf since May 6. He was originally on the full dose of 960 mg twice a day, but due to the severity of the side effects the dosage was reduced to 720 mg twice a day.

So far there hasn't been any change in his skin mets and he hasn't had his first ct scan since starting the Zelboraf. We spoke to his oncologist about it, but all he said is that the mets are the last thing to change.

Thanks,
Valerie

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Iowa98's picture
Replies 3
Last reply 6/28/2012 - 8:21pm
Replies by: NYKaren, LynnLuc

Hello,

With my father coming off of some chemo treatments, he has been using steriods to bolster his energy level.  While not the prescribed usage, it has helped with his energy and overall emotional state.  However, he is now starting IPI / Yervoy and I've read that the use of steriods may impact the effectiveness of the treatment.  Has anyone heard or experienced this?

Thanks, what a journey......

Jessica

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awillett1991's picture
Replies 5
Last reply 6/28/2012 - 6:43am

I feel like the last unicorn being a BRAF V600D but I'm posting this in the hopes it can help someone else. I can't be the only one. Despite there being no data available on its efficacy, Dr Sosman believed that Zelboraf would work on my tumor. I started 4-17 and was on and off for the horrid rash, then joint pain. I also suffer through the other many nasty side effects like so many people. I have been steady on 3 pills 2 times a day for 9 weeks or so. In April I had a cardiac met measuring 24x25mm and yesterday It measured 18x16mm. It's working and we are rejoicing for however long it lasts.

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Sharona19's picture
Replies 4
Last reply 6/28/2012 - 12:42am

I will see the Oncologist for the first time since diagnosis, WLE with full thinkness skin graft and SLNB of invasive nodular melanoma of the left foot. So far, margins are clear as are the nodes and I want to as aggressive as possible in keeping any recurrence at bay. Can anyone offer suggestions on questions I should ask about a treatment plan? Are there any Stage II folks receiving treatment? I would appreciate any advice or stories from anyone so I can make the best, most informed decision for my treatment.

Thank you in advance for any help.

Sharon

Everything works out in the end, so if it isn't worked out then it's not the end.

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Angelica Camargo's picture
Replies 8
Last reply 6/27/2012 - 11:15pm

Hello, 

 

My mom was diagnosed with Mucosal Melanoma March 2012. She already had surgery to remove the tumor (stage IV) and completed her Radiation treatment. She never felt sick and has had an amazing energy throughout all the past months. It is sacry to know that cancer can be so silent. To be honest, only reason we know she "had" (hopefully) cancer is because of the biopsy. Her scans came clean and we are so greatful and hopeful that she is truly clean. But of course we know that this melanoma cells are very sneaky and they can be small and hiding around the body. Our oncologyst 100% suggested "INTERFERON". We are not scare of the side effects but I would love to hear from people that has had or have this same type of cancer. It is so rare that it is so frustrating to hear from the Doctors "We just don't know"

 

Greatfully, 

 

Angelica (Gely's daughter)

BTW: Bastyr Clinc (Naturopathic University) has helped us so much make my mom's body so strong and healthy. I 100% recomment to complement any treatments with Viatmins, supplements and an extremly healthy food routine. 

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Tim--MRF's picture
Replies 3
Last reply 6/27/2012 - 10:11pm

The news reported a few days ago that the the review panel for Britain's National Health Service have said that Zelboraf is too expensive and the long-term benefits are unclear, so they recommend the NHS not cover the drug.  This is devastating news for melanoma patients in Britain, and I believe we need to help reverse this recommendation.  My colleagues in the UK and Europe have asked for our help, and here is what they recommend:

If you are a melanoma patient or the family/friend of a patient in the UK, please submit a comment on this issue.

If you have taken Zelboraf--particularly if you are a long-term responder--please submit a comment even if you don't live in the UK.  Your story can have an impact.  

You can submit comments here:  http://guidance.nice.org.uk/TA/Wave27/5/Consultation/DraftGuidance

My personal feeling on this is driven by a few widely-reported facts:

--clinicians have a biomarker that predicts response

--response rates are high among those patients receiving the drug

--while the median duration of response is 6 to 7 months, those months tend to be characterized by high quality of life

--some patients have much longer responses

This seems like a strong case for approving the drug in the NHS.  

Tim--MRF

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bikerwife's picture
Replies 6
Last reply 6/27/2012 - 8:46pm

Lynn started taking his pills Monday not sure what to expect hoping for the best. I do know thems some big pills. Lynn is trying to stay out of the sun and I did go buy him a uv shirt to ride in not that we get to ride a lot but hoping he gets to feeling better soon.

He's lost so much weight really hoping he can gain some of it back.

Lynn has a lot of little tumors on his body a lot of them disappeared after ippi. Will zelobraf make them disappear.

Anyone that can give me some ideas of what to expect or things I can do to help him. It would be greatly appreciated. As allways love and pray s for you and your families.

Thanks Belva

What God leads u to he will. Lead you through

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Fighting Mama's picture
Replies 11
Last reply 6/27/2012 - 6:34pm

The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently...I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn. 

What has worked or helped for other folks on Zel? My hubby had a special UV protective tint applied to our vehicle windows, I have purchased some UVP clothing...but I refuse to stay inside and not enjoy summer time with my family!

I would love to hear from others going through this.

Best,

Amy

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http://news.vanderbilt.edu/2012/03/melanoma-drugsecondary-tumors/

In 2011, the FDA approved the drug vemurafenib for the treatment of metastatic melanoma in patients whose tumors harbor the BRAF 600E mutation. While the drug, known commercially as Zelboraf, has nearly doubled survival among patients who respond to treatment, a significant number of those patients develop secondary skin cancers – most commonly squamous-cell carcinomas and keratoacanthomas.

To determine the cause of these secondary cancers, the investigators performed a molecular analysis of patient lesions.

Most of the patients (78 percent) had clinical signs of chronically sun-damaged skin and 17 percent had a history of squamous-cell carcinomas or keratoacanthomas.

Researchers obtained 21 samples of cutaneous squamous-cell carcinoma or keratoacanthoma from 11 patients with metastatic melanoma, and a validation set of 14 samples from 12 patients who had been treated with vemurafenib.

The investigators found that about 60 percent of the tumor specimens harbored mutations in the RAS gene, the most prevalent being HRAS Q61L.

The researchers then used a mouse model to induce HRAS Q61L-mediated skin cancers and found that while vemurafenib did not initiate or promote cancer development, it accelerated growth of existing lesions that harbored HRAS mutations.

Growth of these tumors was blocked when a drug that inhibits the MEK molecular pathway was used.

“This is a prime example of bedside-to-bench research where observations by oncologists can be rapidly studied and elucidated by close collaboration with dermatologists and basic scientists,” said Puzanov.

“This will inform further clinical development of next-in-line BRAF inhibitors, as well as BRAF-targeted drug combinations.”

The authors note that studies in mice suggest these secondary tumors develop from a multi-step process driven by exposure to a chemical carcinogen or ultraviolet light, followed by a tumor-promoting event. This event is an oncogenic driver mutation in RAS, preferentially in HRAS.

“Our study suggests that combining the BRAF inhibitor vemurafenib with a MEK inhibitor drug may be useful in patients who harbor the RAS mutation,” said Puzanov.

Melanoma patients who are being treated with vemurafenib are now monitored closely for the potential development of these secondary skin cancers, which tend to appear soon after treatment begins.

The secondary cancers can be safely removed surgically and patients do not have to stop vemurafenib therapy for their metastatic melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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Ali's picture
Replies 15
Last reply 6/27/2012 - 3:43pm

Just wanted to update everyone.  I am waiting to be discharged after my 6th and final week of IL-2.  My fist scans looked really good, shrinkage and stable disease.  The second scans showed new subcutaneous mets (I already knew that because I could feel them) but the tumor in the liver and bones looked stable still.  So we went ahead with the last cycle.  I got 9 bags in the fist week and 8 for the second.  I can still feel 2 subqs which have shrunk this week.  The Dr. guesses will have to go with a plan b, that I most likely will not be a complete responder (next scans in July).  But today I am grateful that the IL-2 has helped (I have felt 6 tumors disappear over the last 4 month), and I hope it will keep helping, and maybe enhance the effects of a next treatment.

This week we have found what may be vitiligo on my belly, and the Dr. said some moles on my back look like they have a halo of white around them.  Those are good signs that my body is specifically attacking my melanocytes. 

I feel so blessed, we were so well taken care of in and out of the hospital. 

If anyone has questions about the IL2 experience you can message me and I will be happy to answer any questions. 

I pray for all fellow warriors that we can beat this thing!!!!  God bless.

Ali

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Anonymous's picture
Replies 24
Last reply 6/26/2012 - 10:56pm
Replies by: Cindy33, PlantLady, natasha, Anonymous, Harry in Fair Oaks

I am beside myself.  My second opinion on slides has resulted in a worse diagnosis of malignant melenoma.  This was an old mole that was biospied and atypcal but only a little and grew back.  What does this mean?  Does this mean I have to change the way I live my life?  Does everyone have at least one melenoma but not know it? How common is this?  It was a noninvasive melanoma confined to my first layer of skin.  I am leaving on holiday for the beach next week.  Was dreaming of sun and sand.  I am now noticing odd pains in my head and joints and scared it has spread.

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