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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Shez's picture
Replies 7
Last reply 8/24/2013 - 10:43pm

Does anybody have any experience with limb perfusion chemo?

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I've told my dad numerous times to cover up if he even travels to the grocery store...he didn't listen and has photosensitivity to his face. Has anyone had this and if so how did you treat it? He will now be wearing a hat I gave him and long sleeves. I don't think he realized how harsh it is.

Thanks!
M

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Richard_K's picture
Replies 5
Last reply 8/24/2013 - 9:33pm

Last week I received good scan news but bad blood news.  My bilirubin was up and I was placed on a “holiday” from Zelboraf.  Yesterday I had blood retested locally and this morning I was told the bilirubin was back to normal, my “holiday” was over.  Whew!  Next week I will have completed 43 months on Zelboraf.

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casagrayson's picture
Replies 5
Last reply 8/24/2013 - 9:27pm

My view of the board is all messed up.   Just text ... no tables or anything.  Anyone else?

Strength and Courage,

Susan

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http://www.drmirkin.com/nutrition/honey.html

High Fructose Corn Syrup

 

When did we start having more and more cancer?

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

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/23/2013 - 3:24pm
Replies by: casagrayson, natasha

Hello,

My OB/Gyn is trying to convince me using Mirena (hormonal IUD that has progesterone) because of very heavy periods. I am not sure about it because of my Stage 1 diagnosis. Have anyone used it with mm diagnosis?

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Roxy1453's picture
Replies 10
Last reply 8/23/2013 - 1:44pm

I haven't posted in quite awhile. I have been on here several times to see how everyone is doing though.
I have been doing so well and have been trying to put it behind me and live my life. I have had 4 months off and have been feeling as close to normal as I can. I had a PET Scan yesterday that shows a spot in my lung. It's in the scar tissue from my surgery to remove Mel in 2011. He says its on the edge of my lung and had probably gone to my pleura also. He's not for sure about any of it yet and has given me two choices. Wait 8 weeks and and have another scan and see if it grows or do a needle biaopsy which could deflate my lung. I don't know if I can wait 8 weeks and sit and worry that long. I also have two children getting married next May and July. If I had to have treatment I would rather get started now rather that 8 weeks from now. What are your thoughts? I'm stage 4 metastatic.

"I can do all things through Christ who strengthens me." Philippians 4:13

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Good ARTICLE about how the portions of our Genomics works - including the genes and protein relationships that many people do not understand.

http://www.ncbi.nlm.nih.gov/About/primer/genetics_genome.html

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

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nnhood's picture
Replies 11
Last reply 8/22/2013 - 2:44pm
Replies by: JerryfromFauq, Anonymous, nnhood, Janner, hbecker, sbrooks90, POW

 

About three months ago I had noticed a small dime-sized red mark on my right side / buttock area.  At first I simply dismissed it as a bug bite but noticed that it wasn't going away. It didn't grow, but didn't shrink either and looked harmless enough, it hadn't scaled over at all.  I scheduled an appointment with a dermatologist and they removed the lesion and did a biopsy. On the breslow scale it was only .48 in depth so they did not do any lymph node biopsies.

They called me back and told me it was a superficial melanoma and that it was very good that I caught it early. A few days later I went back in they surgically removed the recommended area around the original lesion. 

It required 10 stitches, but it was a painless procedure and it's now healing well. I had the top stitches taken out a couple weeks ago.

I will now be going back every three months for the time being to get a physical exam and skin examination.

I guess I'm just paranoid now, I'm not so much worried about every little mark on my skin, but I worry about aches and pains in other areas being cancer now.  Sort of the opposite of worrying about the surface lesion spreading, I'm starting to worry the cancer was somewhere else and showed itself on the surface by way of this melanoma...

Should I have any other tests done like CT or PET scans to be sure or is that just being a hypochondriac.  It doesn't help my mom always worked for doctors her whole life, I'm always trying to be proactive which is good, but not when you obsess over something.

Thanks,

Matt

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mark1101's picture
Replies 2
Last reply 8/22/2013 - 12:42am
Replies by: Tim--MRF, Richard_K

My dermatologist had a little spot (1 cm) on my face biopsied which came back squamous cell carcinoma.  I am scheduled for Moh's surgery in a few weeks to get it cleaned up.

I am starting my Ipi maintenance phase for Stage III melanoma next week.  Has anyone heard of the presence of a different cancer on the skin causing problems with continuing treatment of a melanoma?

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Marker Could Predict Dabrafenib Response in Melanoma

 
By Leah Lawrence | August 18, 2013
 
 

The results of BREAK-2, a phase II clinical trial of dabrafenib, were recently published in the Journal of Clinical Oncology, showing that the BRAF inhibitor dabrafenib was effective in the treatment of patients with advanced melanoma with the BRAF V600E/K mutation, with a manageable toxicity.

Based on the results of this study, and the subsequent BREAK-3 phase III trial, dabrafenib was approved by the FDA in late May for the treatment of patients with unresectable or metastatic melanoma with BRAF V600E mutation.

In addition to the drug’s efficacy, the researchers, led by Paolo A. Ascierto, MD, vice-director of the unit of melanoma, cancer immunotherapy and innovative therapy at the National Tumor Institute Fondazione G. Pascale, Naples, Italy, also found that circulating cell-free DNA could represent a possible predictive marker of response, if results are confirmed in a larger prospective study.

Ascierto and colleagues examined outcomes in 76 patients with stage IV BRAF V600E and 16 patients with stage IV BRAF V600K metastatic melanoma. All patients were assigned to receive 150 mg dabrafenib twice daily until progression, death, or unacceptable adverse events.

At the time of follow-up, 59% of patients in the BRAF V600E–mutated population had a confirmed response, including 7% with complete response. Of the patients with BRAF V600K–mutated melanoma, 13% had a partial response.

The researchers also looked at secondary endpoints of progression-free survival and overall survival. The progression-free survival in the V600E group was 6.3 months, and in the V600K group it was 4.5 months. The overall survival for V600E and V600K was 13.1 months and 12.9 months, respectively.

“The overall survival reached in the study confirmed the important role of the BRAF inhibitor in the treatment of advanced melanoma patients,” Ascierto said.

Overall the treatment was considered to be well tolerated. Twenty-seven percent of the group experienced a serious adverse event and 93% of patients experienced any adverse event. The most commonly occurring adverse events were arthralgia (33%), hyperkeratosis (27%), and pyrexia (24%).

“The evaluation of the circulating cell-free DNA showed a possible correlation between the baseline level of circulating cell-free DNA in the V600E population and progression-free survival and response rate, with higher value of baseline circulating cell-free DNA correlating with a reduced progression-free survival and overall response rate,” Ascierto said. “Of course, this finding should be confirmed in further studies.”

==========================================================

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2154519

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

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Marker Could Predict Dabrafenib Response in Melanoma

 
By Leah Lawrence | August 18, 2013
 
 

The results of BREAK-2, a phase II clinical trial of dabrafenib, were recently published in the Journal of Clinical Oncology, showing that the BRAF inhibitor dabrafenib was effective in the treatment of patients with advanced melanoma with the BRAF V600E/K mutation, with a manageable toxicity.

Based on the results of this study, and the subsequent BREAK-3 phase III trial, dabrafenib was approved by the FDA in late May for the treatment of patients with unresectable or metastatic melanoma with BRAF V600E mutation.

In addition to the drug’s efficacy, the researchers, led by Paolo A. Ascierto, MD, vice-director of the unit of melanoma, cancer immunotherapy and innovative therapy at the National Tumor Institute Fondazione G. Pascale, Naples, Italy, also found that circulating cell-free DNA could represent a possible predictive marker of response, if results are confirmed in a larger prospective study.

Ascierto and colleagues examined outcomes in 76 patients with stage IV BRAF V600E and 16 patients with stage IV BRAF V600K metastatic melanoma. All patients were assigned to receive 150 mg dabrafenib twice daily until progression, death, or unacceptable adverse events.

At the time of follow-up, 59% of patients in the BRAF V600E–mutated population had a confirmed response, including 7% with complete response. Of the patients with BRAF V600K–mutated melanoma, 13% had a partial response.

The researchers also looked at secondary endpoints of progression-free survival and overall survival. The progression-free survival in the V600E group was 6.3 months, and in the V600K group it was 4.5 months. The overall survival for V600E and V600K was 13.1 months and 12.9 months, respectively.

“The overall survival reached in the study confirmed the important role of the BRAF inhibitor in the treatment of advanced melanoma patients,” Ascierto said.

Overall the treatment was considered to be well tolerated. Twenty-seven percent of the group experienced a serious adverse event and 93% of patients experienced any adverse event. The most commonly occurring adverse events were arthralgia (33%), hyperkeratosis (27%), and pyrexia (24%).

“The evaluation of the circulating cell-free DNA showed a possible correlation between the baseline level of circulating cell-free DNA in the V600E population and progression-free survival and response rate, with higher value of baseline circulating cell-free DNA correlating with a reduced progression-free survival and overall response rate,” Ascierto said. “Of course, this finding should be confirmed in further studies.”

==========================================================

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2154519

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

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mark1101's picture
Replies 6
Last reply 8/21/2013 - 10:06am
Replies by: mark1101, Gene_S, ecc26, DeniseK

I am in the Ipi trial for Stage III.  I completed my infusion treatments on May 14 and am starting maintenance treatments this coming Monday, August 26.  I started experiencing a rash and itching a week after my second infusion.  We managed it with Prednisone.  Other than a few days prior to each infusion I have been taking Prednisone almost continuously since mid-April.  As of today, the itch and rash have cleared up and I am off Prednisone.  Wondering what I might expect after the maintenance treatment on Monday.  I have two questions regarding all of this:

1.  Does the tendency to have the itching and rash reaction abate at all as treatment goes on...ie will I become less sensitive?

2.  What long-term effects of Prednisone should I be aware of, and are there alternatives to Prednisone with less inherent toxicity?

My good news is that my last PET was on August 12 and I have been NED now since my last surgery at the end of January.

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michmart930's picture
Replies 9
Last reply 8/21/2013 - 12:40am

Hi everyone.  Sorry if my post seems juvenile.  I don't really know where else to vent my concerns and fears.  If nothing else, this post will help me get what I am feeling off my chest.  I had a small mole (less than the size of a pencil eraser) removed off my lower stomach last week Tuesday.  I noticed the mole changing color and elevation early in my pregnancy (almost a year ago now) and since losing the baby weight and seeing the mole again, I noticed it was black and some parts were black with a dome shaped appearance.  Although I don't have a lot of the risk factors for melanoma (I am a dark haired Asian with barely any moles), I have experienced several blistering sunburns and spent almost 12 years (off and on) tanning in beds.  Some of the years I was intensely tanning in beds.  I am now 28, married with 2 children under 2 and am scared my past has come to bite me.  

I am a bit confused bc I had seen several doctors during my pregnancy and after for other issues and no one pointed out this mole to me as being suspicious.  Even the dermatologist when removing it wasn't concerned.  Said something about cancerous moles usually being "deeper".  I thought all moles that changed colors, especially with it changing to black and dome like, should be considered suspicious.  Now, it  has been 10 days and apparently the lab says the biopsy is still pending, even with 2 different docs calling the lab for an update.  Does this seem long to anyone if the biposy was normal?  I am getting the feeling someone knows something and just isn't telling me.  Here goes another weekend of waiting.  

Thanks for letting me vent.  So scared.  I think about all those diagnosed and living with this constantly.  My heart goes out to you and your families.  

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