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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DonnaK's picture
Replies 11
Last reply 8/28/2013 - 1:45am

Hey.  After a whirlwind tour of WBR and 1 dose of ipilimumab, my husband is switching to dabrafinib due to his rapidly deterioriating condition. I was surprised to get the bottle today and see the dosage said take two pills (150mg total) once a day, instead of twice a day.  For those of you currently on dabrifinib/taflinar, what dosage are you taking? I put in a call to John's oncologist but wanted to check here as well!

Thanks!

Donna

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joycedixon's picture
Replies 9
Last reply 8/27/2013 - 11:23pm

After 5 months of zelboraf,the lesions on liver and lungs are GONE. Uptakes on lymph glands went from 12 to 2

so  very  happy that I have responded.I am on full dose .Joint pain ,skin problems and lately losing quite a bit of hair--

First couple of months were the worst with the joint pain.I figured out if I did not climb chairs,change babies on floor or twist my knee--I would be okay.

So I am careful how I move --It doesn't have to be strenuous and immune system overreacts.Once my knees get sore--my arms do from extra strength

needed.--

Doctors are not familiar with intermittent dosing.If you have been on zelboraf for many months,Have you had any time off?I am referring to a

week off every once in a while.I know they have not done research on humans but results were good on the mice.

 

 

 

 

 

 

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MattF's picture
Replies 6
Last reply 9/3/2013 - 4:02pm

so the FNA of mass in Salivary gland came back as Metastatic Melanoma

I saw Oncologist yesterday at UCLA

I asked the basic "right" questions...what he would consider this? reoccorence? Sat Met? Node? or just a MET in local region? or MET to distant organ?

He didnt want to answer any of this right now nor did he want to stage it....obviously we are at stage 3 but 

he wants a PET and then surgery to get in there and find out if the entire Parotid Salivary Gland is consumed? Or is it just a piece? or even possibly is it a node or group of nodes in the Salivary Gland itself. He also wants the tissue for Braf testing.

So it will be a Parotidectody (sp) and Lymphdectomy (sp)

He said after the scan and the surgery he will be able to actually use the pathology and surgery info to clearify what we are dealing wih and then move on to treatment.

Does everyone agree with this?

He did say no matter what they find he will recommend I start treatment after the surgey.

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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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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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42-year old male. Stage IIIC, pT4b, pN2b, Mx.

Otherwise healthy and energetic.  No symptons or signs of illness. 

 

Eight weeks ago, I went to the doctor expecting to get a prescription for penicillin for an infection on my right foot and was eventually diagnosed with Stage IIIc melanoma in the bottom of my foot.  After several several MRIs, CAT scans, and a PET scan, it was determined that the melanoma did not spread to my liver, lungs, or other major organs.

11 days ago, I received a Transmetatarsal amputation (TMA) on my right foot.  At the same time, I received a Sentinel Node Biopsy (SNB) on my right groin.  I just learned that 3 of 5 nodes were positive. 

Yesterday, the doctor recommended that I get a groin dissection on my right thigh.  Once this is completed, then he would recommend me for a trial study, probably interferon.  

HERE IS MY QUESTION

I would like to hear from others with melanoma who have had positive SNBs.  Does everyone simply then progress to having the groin dissection?  I am crazy to not get the groin dissection?  I am crazy to not want to move forward with the trial with interferon?  What other options are out there?

It has literally been less than 24 hours for me to process this information so I am still in that manic decision state.  I am scheduled for the groin dissection on Sept 11th but am seriously considering not having this operation.  My foot is still healing from the TMA.  My inner thigh is still healing from the SNB.  Other than these surgeries, I have high energy levels and zero symptons of sickness.  From what I have read and been told, the groin dissection does not necessarily guarantee anything, other than lymphoedema and a longer physical recovery.  And I don't have to explain interferon to this group. 

I would truly appreciate any and all comments about your thoughts on my situation. 

Thank you very much,

Matt

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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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NYKaren's picture
Replies 6
Last reply 8/25/2013 - 12:07pm
Replies by: awillett1991, NYKaren, Mat, POW, Owl, King

Hi everyone,
So I just started my first dose of Tafinlar.
I'm pretty nervous and excited.

I landed in the hospital again 2 weeks ago for 4 days. I'll keep you posted.

Don't Stop Believing

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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 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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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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Lisa - Aust's picture
Replies 12
Last reply 8/31/2013 - 5:03pm

Hi Everyone,
I visit often and luckily haven't had to post much - but unfort I have some questions! My husband Craig has been on Zelboraf for 2.5 years (complete response) - but we found out today that one of the lymph nodes he had at the beginning of the z trial has started growing again. The onc discussed merck anti PD1 as his next option. I am just looking for some info about it - stories, side effects, results etc - would love to hear from anyone experiencing it :)
Thanks so much
Lisa

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Anonymous's picture
Replies 18
Last reply 3/5/2014 - 7:22pm
Replies by: pigs_sty, Anonymous, benp, Peabody_58, POW

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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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