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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Pretty interesting article on some neat things going on in cancer research.  There's a lot of press on immunotherapy treatments but there's some other novel treatments such as anti-drug conjugate (ADC) and anti-cancer stem therapeutics (CSC) treatments that are starting to show promise as well.  Encouraging to see that there may be even more options in the future. 

http://www.fool.com/investing/general/2014/01/11/how-researchers-are-waging-war-on-the-most-lethal.aspx

Brian

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JerryfromFauq's picture
Replies 1
Last reply 1/13/2014 - 1:12am
Replies by: JerryfromFauq

Why can I not paste in tshe body what I pasted in the Subject?????

 

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

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http://www.integrativeoncology-essentials.com/2013/03/is-there-any-other-anti-cancer-botanical-compound-as-exciting-as-curcumin/#sthash.Ab5ttvQf.dpuf

One might want to read the whole article.  MD Andeeron has written on the benefits of Curcumin.

 

One of the interesting findings:  
Curcumin Acts Synergistically With Chemotherapy and Radiation Therapy:

    Increases tumor cell sensitivity to chemotherapy and radiation therapy
    Protects normal tissues (liver, kidney, mucous membranes, heart, etc.) from radiation and chemotherapy injury
        One recent study demonstrated a significant reduction in radiation dermatitis (skin inflammation) in patients who received curcumin during their radiation therapy for breast cancer. Patients received either oral curcumin (2 gram tablets, taken 3 times per day) or a placebo. The authors reported that the patients taking the curcumin had dermatitis reactions that were on average 31% less than those taking placebo. One of the most impressive findings in this study was that the women taking curcumin had a marked reduction in their risk of developing severe skin reactions (called “moist desquamation”) compared with those taking the placebo; 28.6% (curcumin) versus 87.5% (placebo).

- See more at: http://www.integrativeoncology-essentials.com/2013/03/is-there-any-other...
http://www.integrativeoncology-essentials.com/2013/03/is-there-any-other...
 

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

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Good morning,

The FDA just approved the first-ever combination therapy for advanced melanoma! The combination involves a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib. Both drugs (developed by GSK) were approved by the FDA in May 2013 for use as single therapies. The MRF issued a statement on the approval, which you can read here.

Lauren - MRF

 

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hannahcopeland1's picture
Replies 15
Last reply 1/13/2014 - 11:00am

Hello guys, 

From what I've read so far, the switch from Zelboraf to the new BRAF/MEK combo is a big improvement for people. It makes me really happy to see that and I'm hoping it will be a good thing for me.

I still want to know more though!

I started taking Zelboraf as part of a trial to combine it with IL-2 treatment. I since have opted out of the IL-2 for now and am investigating other options. Im still on Zelboraf and have been since November 4th, 2013. 

So far the Zelboraf has worked really well. We have seen a significant decrease in the size of my large lung tumor, which at the moment is the only location of melanoma that can be seen. Ideally it would keep shrinking until it was a size appropriate for a safe surgical removal, but we dont know if thats possible yet. 

Anyways, I have experienced a lot of the unpleasant side effects that come along with Zelboraf. I wasnt handling the full dose well, so my doctors reduced it to 6 pills/day which did help. I'm still dealing with sporadic and sometimes extreme joint pain, lumps under my skin, fatigue, now hair loss and the everlasting sun sensitivity. 

What I'd like to know a little more about are the side effects involving hair loss and sun sensitivity in the new combination.

I've heard it helps with alopecia and this excites me. I have a thick head of hair, but its thinning more and more each day. My eyebrows and eyelashes are very thin. I would love to save my hair if at all possible! Has anyone had success with this or had hair gain after switching?

The worst side effect for me is the sun sensitivity. Ive been this way about 3 months now and with the winter months it has been a little easier, but it wont be winter forever, and i love being outside. I have even been burned while being inside my house. Can anyone tell me if and how this improves with the combo? Does it completely get rid of it? Or just make is less? Or not at all? 

Thanks in advance for any and all responses!

Im hoping to do the switch within the next few weeks.

Best, 

H

Hannah Copeland

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Anonymous's picture
Replies 4
Last reply 1/13/2014 - 11:15am
Replies by: Golda_, JerryfromFauq, Swanee, Anonymous

I have one box vemurafenib , my father is dead , pls contact me if you have a patient who needs it .

email : abdullah_jarbouh@hotmail.com

00201095301696

you will pay for the shipping cost only .

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Janet Lee's picture
Replies 5
Last reply 1/13/2014 - 11:19am

I've seen a couple of posts recently about left-over melanoma drugs, as well as cautionary replies about scams, confidentiality, etc. I think this is a very valid topic, and would like to know if there are any "legitimate" ways to donate any of these expensive drugs to the melanoma patients who may be without insurance or are being denied the medicine for whatever reason.

Seems to me there should or could be some sort of clearing house to help others?

Janet Lee

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Swanee's picture
Replies 32
Last reply 1/13/2014 - 11:28am

Please join me in an old fashion bell ringing for our friend Denise, who lost her battle with melanoma cancer on January 6th.  

I joined this site 4 years ago and experienced this bell ringing whenever a member whom everyone knew, lost their battle with melanoma.  I don't know where, when or who started it, and I would love to know.  For all who regularly read and post, I think it's a nice way to honor our Friend and send her to the heavens with our bells of solidarity and our quest to keep fighting and find a cure to melanoma cancer..

So in honor of our Friend, Denise Kirley, please ring your bell in honor of her memory.

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hdelancey23's picture
Replies 23
Last reply 1/13/2014 - 2:44pm

January 6 2014 at 5:22 am my mom was called home to be an angel. She fought long and hard even in her last days. And now she is finally at peace. I am mad at her doctor because he went to the hospital two weeks earlier because she had a lot of pain in her back. She knew something was wrong and the doctor only did an x ray and said there was nothing there. It was probably just a pulled muscle. Well when she was admitted to the hospital for the last time they did a more invasive ct scan which hey should have done in the first place and found there was a tumor growing into her spine and bone. Thats what was causing so much pain. Would it have made a difference to do radiation on that tumor? I don't know the cancer was taking over by that point. It was in all of her organs and everywhere. In her last days she still wanted to know; what's next? What do we do now. At that point there really was no more options. She decided she wanted to donate her boy to science so even after her death she is wanting to fight this horrible stupid cancer. I pray that they can find out as much as possible from her body and maybe find a cure from her.

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Anonymous's picture
Replies 3
Last reply 1/13/2014 - 2:51pm
Replies by: POW, Anonymous

This is only available for two days, free full text.  I tried to save in pdf, won't work.  Saved to text file messes up the chart.  So, after two days, I can provide the text if the spam filter does not block it again.  Sorry, very frustrating.

It looks like it is very good info.

http://www.croh-online.com/article/S1040-8428%2813%2900263-1/fulltext

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/13/2014 - 7:24pm
Replies by: Richard_K, POW, Anonymous

Again getting the spam filter blocker message, like last week.  Have a full text article only available today and tomorrow on braf inhibitors.  Looks to be very important.  So, please fix that spam blocker.

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Golda_'s picture
Replies 2
Last reply 1/14/2014 - 2:43am
Replies by: Golda_, GAngel
Hello all!
Friends , we need your advice.
As I said , we are self-treatment my Mom. In our city treated melanoma still with chemotherapy.
Mom started taking Zelboraf with November 2013 . Had a lot of side effects. After 5 weeks of treatment ( 8 tablets , then 6 , then 4 ) mom took a break of 12 days. It seemed to her that the tumor began to grow. Then again began to accept : a few days 8 tablets , 6 ... 4 ... After 18 days of receiving again took a break ...
Swollen hands . Under the skin on the palms have air bubbles as the after burn . Mom does not go out into the street. Fell eyebrows and hair began to fall .
I read a lot about taking Zelborafa with pauses . 4 weeks + 2 week break . 4 weeks &4 weeks .
Does anyone have experience of receiving it Zelborafa with pauses ? Share your story !
Can 8 tablets is too much weight to 62 kg = 137 lbs?
Reading the forum , there was one more question: When you receive combo drugs are taken without pause?
Who first took Zelboraf and then Combo - why you switched to a combo ?
 
Thank you!

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Julie in SoCal's picture
Replies 5
Last reply 1/14/2014 - 7:24am

Hi there Friends!

I'll be starting ippi this coming Wed (15 Jan).  I will be listening to my Dr and communicating well with them, have you all learned any tips or tricks for getting through this?  What is the general knowledge?  Advice? 

Thanks!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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Michelem's picture
Replies 14
Last reply 1/14/2014 - 10:40pm
Replies by: POW, Lil0909, Michelem, kylez, Anonymous, BrianP, JerryfromFauq

My husband has just had his second surgery to remove more lymph nodes from the groin area. He had surgery on a melanoma of his foot and cancerous lymph glands removed in October. He was being screened for a randomized interferon/ipi clinical trial, but the PET scan lit up, leading to this new surgery. Surgeon found that the cancer was more extensive in additional nodes and groin area than anticipated.

At this point, I am uncertain if we are still Stage III, or if this is now considered Stage IV.

We are in Sacramento. Our surgical ocologist has now said it's time for us to see a doc in San Francisco. I see that there are several "melanoma clinics" in SF, but are these considered to be "centers of excellence" for melanoma?  We are likely to be referred to a melanoma specialist at California Pacific Medical Center. It is hard for me to tell if this is truly considered a "center of excellence" for melanoma - can anyone please advise?

A complication for us is that these operations have left my husband with severe lymphedema of the leg, so getting on an airplane to get to a more distant clinic would be problematic.

Thanks for your thoughts! 

MicheleM

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jmccay's picture
Replies 4
Last reply 1/15/2014 - 7:36am
Replies by: POW, jmccay, Janner

Hi Team,

My mother is meeting with Docs next week (Jan 17) with the option to start ipi / Yervoy.

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  She is 73 so this treatment is the only option.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!
James

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