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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SaveMySister's picture
Replies 8
Last reply 8/20/2013 - 4:18pm

My sister's battle barely got off the ground She was diagnosed July 22nd.  She was admitted to Moffit, where she stayed less than a week. They sent her home after 3 days of brain radiation. She received 2 more rounds as an outpatient.  But being that her spleen was so swollen and she could barely get any food or drink down her, she was rushed by paramedics to the ER 4 days later due to fever, nausea/vomiting and extreme pain. They admitted her to Tampa General where she stayed 5 days, missing the 5 supposedly critical brain radiation treatments on the agenda that week, because Moffitt didn't have a bed for her.  They moved her back there just before the weekend, gave her 1 brain radiation treatment on Monday, and then Tuesday she was told they were not going to give her the Zelboraf or the chemo, that they were discontinuing treatment and moving her to hospice that very day.  I spoke to her Tuesday for over an hour on the phone. By the time I got back down to see her Thursday morning, she was so much more incoherent.  She lost her last ability to interact with anyone by 2 AM Friday morning.  Friday evening she died at 9PM.  No one could save my sister.

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/19/2013 - 5:08pm
Replies by: melissa ann

How Brett is doing?  she went by Sharmon

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vrswesley's picture
Replies 6
Last reply 8/19/2013 - 8:24pm

Im at the veru begining, I found a "something" that I susspect is a mole..I say susspect..because I cant really see it..its on my back. i can sorta see it in the mirror.. most of the info i have is what i can get from other people looking at it..driving me crazy.. I have a doc appt is in 3 weeks.

mine Ive been told, looks anything like a bad scratch that has bled and then scabbed over to a mole with a rough tecture and a thin red line srounding it. int about a short centimeter in lengther and roughly oval in shape.

my friend paul wants the doc to look at it RIGHT now-he had something simular once that was cancer.. others say its nothing.. others say 3 weeks is soon enough.. its driving me crazy that I cant see it.

 

I have alot of health problems, am on social seciurity disabilty, my husband JUST died.. Im depressed and...now SCARED.

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kwb's picture
Replies 4
Last reply 8/19/2013 - 2:02pm
Replies by: kwb, JerryfromFauq, Becky

Greetings....Diagnosed in late July with a recurrence of melanoma in my right lung (two small tumors).  I have c-Kit gene mutation and doctor wants to start me with Gleevec.  I've been doing a bit of research on my own, but I want to know if anyone in this "community" has any insights or experience with this drug.

Thanks.

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Replies by: Delores T., POW

This trial has been recommended for my niece.  Just wondering if anyone has any experience with this trial?  For background - my niece is stage IIC - diagnosed with a pink melanoma - 4.24mm deep, ulcerated with a mitotic rate of 9.  It seems like interferon is not a great choice.  I know it is controversial but wondering what the pros and cons might be of each treatment.  Thanks so much!

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audgator's picture
Replies 10
Last reply 8/30/2013 - 7:43am

I'm not sure if this is the appropriate BB in which to post some sad news. I think my father was active on this website, especially while he was going through his treatments for melanoma. (This is his son, posting via his account.)

My father passed away last weekend from a heart issue unrelated to his melanoma or its treatment. Our family history is one of poor heart health, and my father had a longer life than both his dad & his older brother who died in their 50s. At my father's memorial service on Thursday, his oncologist spoke with my mother about my dad. My mom thanked her effusively for the treatment and making him 90% cancer free. The doctor corrected her, & said my dad beat cancer. His legacy will live on too. She told my mother that the clinical trial in which he was a participant was so successful that it will be submitted for FDA approval next year. His results will be included. Hopefully his legacy can live on in future patients beating melanoma with the drugs developed by Moffitt's researchers!

I want to thank all of you who supported my father through this forum over the last four years. Family support is wonderful in times of need, but sometimes the support of those who've walked in your shoes is even better. Going through his recent posts, I see that he gave as much as he received. I wish you all well in your continued recovery & an NED diagnosis in your future!

Sincerely,

Ben James, son of Daniel H. James

http://www.legacy.com/obituaries/sunsentinel/obituary.aspx?n=Daniel-James&pid=166425070

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melmar's picture
Replies 36
Last reply 8/25/2013 - 1:07pm

Thanks to all for responses to my early post, I really appreciate the help. I am wondering if any of you have done TIL and what success or side effects you have had. Thanks in advance for taking the time to respond.

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Research August 14, 2013
 

Phase II Trial (BREAK-2) of the BRAF Inhibitor Dabrafenib (GSK2118436) in Patients With Metastatic Melanoma

 

J. Clin. Oncol. 2013 Aug 05;[EPub Ahead of Print], PA Ascierto, D Minor, A Ribas, C Lebbe, A O'Hagan, N Arya, M Guckert, D Schadendorf, RF Kefford, JJ Grob, O Hamid, R Amaravadi, E Simeone, T Wilhelm, KB Kim, GV Long, AM Martin, J Mazumdar, VL Goodman, U Trefzer

 

 
TAKE-HOME MESSAGE

Dabrafenib, a novel BRAF inhibitor analogous to vemurafenib, is shown to have clinical activity in this phase II single-arm trial of metastatic melanoma, with a response rate of 59% and progression-free survival of 6.3 months in patients with V600E mutations.

 

ABSTRACT

Purpose: Dabrafenib (GSK2118436) is a potent inhibitor of mutated BRAF kinase. Our multicenter, single-arm, phase II study assessed the safety and clinical activity of dabrafenib in BRAFV600E/K mutation–positive metastatic melanoma (mut+ MM).

Patients and Methods: Histologically confirmed patients with stage IV BRAFV600E/K mut+ MM received oral dabrafenib 150 mg twice daily until disease progression, death, or unacceptable adverse events (AEs). The primary end point was investigator-assessed overall response rate in BRAFV600E mut+ MM patients. Secondary end points included progression-free survival (PFS) and overall survival (OS). Exploratory objectives included the comparison of BRAF mutation status between tumor-specific circulating cell-free DNA (cfDNA) and tumor tissue, and the evaluation of cfDNA as a predictor of clinical outcome.

Results: Seventy-six patients with BRAFV600E and 16 patients with BRAFV600K mut+ MM were enrolled onto the study. In the BRAFV600E group, 45 patients (59%) had a confirmed response (95% CI, 48.2 to 70.3), including five patients (7%) with complete responses. Two patients (13%) with BRAFV600K mut+ MM had a confirmed partial response (95% CI, 0 to 28.7). In the BRAFV600E and BRAFV600K groups, median PFS was 6.3 months and 4.5 months, and median OS was 13.1 months and 12.9 months, respectively. The most common AEs were arthralgia (33%), hyperkeratosis (27%), and pyrexia (24%). Overall, 25 patients (27%) experienced a serious AE and nine patients (10%) had squamous cell carcinoma. Baseline cfDNA levels predicted response rate and PFS in BRAFV600E mut+ MM patients.

Conclusion: Dabrafenib was well tolerated and clinically active in patients with BRAFV600E/K mut+ MM. cfDNA may be a useful prognostic and response marker in future studies.

Journal of Clinical Oncology
Phase II Trial (BREAK-2) of the BRAF Inhibitor Dabrafenib (GSK2118436) in Patients With Metastatic Melanoma
J. Clin. Oncol. 2013 Aug 05;[EPub Ahead of Print], PA Ascierto, D Minor, A Ribas, C Lebbe, A O'Hagan, N Arya, M Guckert, D Schadendorf, RF Kefford, JJ Grob, O Hamid, R Amaravadi, E Simeone, T Wilhelm, KB Kim, GV Long, AM Martin, J Mazumdar, VL Goodman, U Trefzer

This abstract is available on the publisher's site.

Access this abstract now

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Replies by: Tina D, BrianP, tico1, JerryfromFauq, Anonymous

I'm Stage 4 w/unknown primary. I've been NED for 5 years now and after latest scan, blood work and oncology appointment, my oncologist is releasing me from oncology and turning me over to my primary care physician for montoring. Only caveat is that he will be reviewing all my scans over the last 5 years and provided no abnormalities, I'm released. He did assure me that if my PC or myself had any reason to be concerned about any abnormalities, that I would be able to come back in for evaluation. I am still considered NED, and not cured, so it is still scary to know that it can return at any time. The biggest thing that weighs on my mind about this is that I had NO symptoms before my mets were discovered while checking for other issues.

This blog has been a tremendous help to keep me going this far and I thank everyone who is fighting the battle here and helped myself and others. Especially those here who have been fighting and surviving longer than myself. I will still be around on this blog to help others and share my experiences.

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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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SteveH230's picture
Replies 12
Last reply 8/28/2013 - 1:03pm

I just thought I would offer some good news and encouragement to those who are currently dealing with brain mets, seeking access to PD-1 trials, and/or considering WBR.  You can read my profile for a more in-depth history of my wife Heather, but the quick summary is that she did IL-2 last fall and then Ipi which ended in March.  Everything was stable after Ipi except for 2 tiny brain mets of her meninges (2mm and 1mm).  SRS stabilized them in May, but a new one popped up (4mm) on the June scans.  The doctors were worried about it being leptomeningeal disease, but more MRIs ruled this out.  

Rather than risk this happening again with more SRS, her doctors at Emory (and 2nd opinion at MD Anderson) recommended Whole Brain Radiation plus Temodar.  The idea being that it would stabilize everything (at worst) and prevent new things from popping up.  July was no fun going through the treatment (fatigure, nausea, vomiting, daily trips to radiation), but it was all worth it!  

She got a "stable" MRI completed on Tuesday this week and we went straight to Vanderbilt yesterday to do the screening for the MK-3475 vs Chemo trial (for patients progressing on Ipi).  Things are moving very fast and we will found out later today or tomorrow if she has been officially accepted and whether she will start on PD-1 or chemo.  There is crossover available if you get chemo, so we are comforted by that.  The trial nurse said that so far every single patient of theirs on the chemo arm has crossed over at the 12-week mark.  Makes you wonder why it's necessary to keep that part going, but rules are rules.  

Vanderbilt has an outstanding melanoma team and a TON of trials available, including at least 4 anti-PD1 trials (BMS & Merck vs chemo, Ipi-PD1 'concurrent' combo, and Ipi-PD1 'sequential').  Though we are fairly new there and drive up from Atlanta, we are very happy with everything.  Yesterday we had to do labs, consent forms, doctor visit, EKG, and a CT scan.  Never had to wait more than 10 minutes for anything except the CT.  Dr. Puzanov is quite a character and very upbeat/encouraging.  Appreciate any thoughts and prayers you can send us as we await the news from randomization.  We want the good stuff right out of the gate!  

Thank you,

Steve

Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

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Hello everyone,

 

I would really appreciate some help.My husband is in a very difficult situation because the illness is advancing too fast.

We have apply for the compassionate use of dabrafenib but is not coming until the end of the month.

At the moment we have only chemo.We are in Spain and my oncologist tells me this Braf inhibitors are still not commercialize in Europe.We would like at least to buy one month supply to give my husband the best fighting chance .Could anybody tell me where could i buy this pills urgently.I can fly anywhere.

tHANK YOU very much for your help!!

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Hello everyone,

 

I would really appreciate some help.My husband is in a very difficult situation because the illness is advancing too fast.

We have apply for the compassionate use of dabrafenib but is not coming until the end of the month.

At the moment we have only chemo.We are in Spain and my oncologist tells me this Braf inhibitors are still not commercialize in Europe.We would like at least to buy one month supply to give my husband the best fighting chance .Could anybody tell me where could i buy this pills urgently.I can fly anywhere.

tHANK YOU very much for your help!!

 

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Hello everyone,

 

I would really appreciate some help.My husband is in a very difficult situation because the illness is advancing too fast.

We have apply for the compassionate use of dabrafenib but is not coming until the end of the month.

At the moment we have only chemo.We are in Spain and my oncologist tells me this Braf inhibitors are still not commercialize in Europe.We would like at least to buy one month supply to give my husband the best fighting chance .Could anybody tell me where could i buy this pills urgently.I can fly anywhere.

tHANK YOU very much for your help!!

 

 

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Hello everyone,

 

I would really appreciate some help.My husband is in a very difficult situation because the illness is advancing too fast.

We have apply for the compassionate use of dabrafenib but is not coming until the end of the month.

At the moment we have only chemo.We are in Spain and my oncologist tells me this Braf inhibitors are still not commercialize in Europe.We would like at least to buy one month supply to give my husband the best fighting chance .Could anybody tell me where could i buy this pills urgently.I can fly anywhere.

tHANK YOU very much for your help!!

 

 

 

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