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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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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catleya's picture
Replies 6
Last reply 8/19/2013 - 5:21am

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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sbrooks90's picture
Replies 8
Last reply 8/20/2013 - 3:34pm

Hello Everyone,

I am a 23 year old from Canada who has been dealing melanoma for 3 months now. I stumbled upon the board in the first few days following my initial diagnosis and will admit, I was scared to death to start reading these posts. You can see by looking at my profile all of the details but currently I am at Stage IIIa. There is so much information out there on the internet that tends to be misleading and this is honestly one of the best forms/support groups that I have stumbled upon. There are many people on here who are knowledgeable in this disease and willing to give great advice. So thank you to everyone in this group :) Although this is my first time posting... I have been following this group for a few months now.

Anyway just thought id share my thoughts.

Samuel

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sbrooks90's picture
Replies 1
Last reply 8/16/2013 - 9:12am
Replies by: hbecker

Hello Everyone,

I am a 23 year old from Canada who has been dealing melanoma for 3 months now. I stumbled upon the board in the first few days following my initial diagnosis and will admit, I was scared to death to start reading these posts. You can see by looking at my profile all of the details but currently I am at Stage IIIa. There is so much information out there on the internet that tends to be misleading and this is honestly one of the best forms/support groups that I have stumbled upon. There are many people on here who are knowledgeable in this disease and willing to give great advice. So thank you to everyone in this group :) Although this is my first time posting... I have been following this group for a few months now.

Anyway just thought id share my thoughts.

Samuel

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I have recently been questioned as to why I often say Oncoproteins and oncogenes. Genes and proteins are good and necessary. BRAF is a good and necessary part of our body makeup. We don't want to stop/remove the BRAF proteins and Genes from our bodies. We want to remove/block the Oncoproteins and oncogenes from their derogatory effects on our bodies.

What is BRAF?

BRAF, a member of the RAF family, is a protein kinase that is encoded by the BRAF gene. The RAF family of proteins includes 3 misinforms: ARAF, BRAF, and CRAF. While each isoform plays a role in the RAS-RAF pathway, BRAF is the main activator of MEK. BRAF plays an important role as an intermediary in the RAS-RAF signaling cascade, a pathway responsible for normal cell growth, differentiation, and survival.2

What is oncogenic BRAF?

Oncogenic BRAF can result from mutations in the BRAF gene. Various activating mutations (ie, somatic point mutations) in BRAF cause the protein to become overactive. This triggers a signaling cascade that can play a role in specific malignancies. Approximately 90% of known BRAF mutations are V600E mutations. These involve the substitution of glutamic acid (E) for valine (V) at position V600 of the protein chain, resulting in constitutively active BRAF. Other variants of this point mutation include lysine (K), aspartic acid (http://www.melanoma.org/node/add/forum/10D), and arginine (R). The V600 point mutation allows BRAF to signal independently of upstream cues.3,4,6,7 As a result of constitutively active BRAF, overactive downstream signaling via MEK and ERK leads to excessive cell proliferation and survival, independent of growth facors. Oncogenic BRAF signaling may lead to increased and uncontrolled cell proliferation and resistance to apoptosis (programmed cell death).

*********************************************
All these terms we tend to use and think of as bad, are bad when the go ONCO (I.E. mutate). we could not live witnhojut the good side of them.
I'm me, not a statistic. Praying to not be one for years yet.

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Here is the home page that all should go to and go through the listings on the left and view the many write-ups and Videos contained in the articles. You will be amazed at what you will learn.

: http://www.biooncology.com/molecular-causes-

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

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wpneuma's picture
Replies 1
Last reply 12/19/2013 - 1:00am
Replies by: JustOnceCubbies

I was diagnosed with a stage 3A tumor on my left thigh. Had tumor excision and then a few lymph nodes removed and they were all clear. I started on sylatron at a fairly high dose for the first 1 1/2 Years . Now I am headed into year three at a maintenance dosage until 5 years is up. I am fortunate to be NSD three years later but I am getting dog tired of then appetite, fatigue, type 2 diabetes and thin hair. The fatigue and depression are the worst of these effects.

Anyone complete 5 years on weekly shots? Any thoughts or advice as I try to convince my self to "keep calm and carry on"

Thanks. Wayne

"Hope is the only antidote for fear" Lance Armstrong

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