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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I was watching the news yesterday evening and was shocked to hear that part of this budget hold up is due to certain riders the House of Representatives is attaching to the budget.  One of the riders is to abolish Medicare.  The House is also asking for trillon dollar cuts to medicaid.

Medicare is paid by everyone through a separate tax, its our Social Security /Medicare tax.  So each one of us pays into this system which is suppose to be a very well run system.  However there is a movement to privatize Social Security or to get rid of it.  Its our money and our entitlement and the House or Representatives shouldn't be messing around with it.  I don't know how many of you are receiving treatment through medicare or medicaid, but these two sources of health care for folks who do not have regular insurance is in jeopardy. 

If you are a person receiving health care through one of these programs, please email your congressman and senator urging them to stop the gutting of these programs.

We have two wars, and another possible one in Libya where we are spending billions monthly and they want to gut medicare and medicaid.  I know many people who are on Medicare and I don't think its right.  Its our money and its our entitlement.  Let them find another area in which to cut. 

C

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/6/2011 - 4:07pm
Replies by: premedy, MichaelFL

Questions....How hard is it to get into MD Anderson? Any doctor recommendations?  We are being told that we are out of options where we are and want to get the best chance of survival, so are seriously considering a move to a great melanoma center (according to a lot of you, MD is one of the best).  Any advice, comments would be appreciated.  My husband is stage 4 with mets throughout his body and brain, and has not responded to interferon, braf,  ipi, etc.  We need to make a decision asap.  As a lot of you know, waiting is killer!!!

Thanks

laughter is the best medicine

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heg50heg's picture
Replies 7
Last reply 4/30/2011 - 10:31am
Replies by: Lauri England, Vermont_Donna, MichaelFL, ockelly, King, Anonymous

Hello , I have just finished my 1st month of high dose interferon treatments. I will see my Dr.on Monday of next week and start the shots foe 11 months. It went well except for the 3rd week when I got really dehydrated and had to spend 3 days at the hospital getting fluids. The Dr. tells me the shots will be easier as there only half as strong but I am skeptical on that as the side effects from the treatments were about all I could handle. The headaches were just about unbearable and I was sent for 2 more brain skans during the last month, and they were both negative. I just feel like one of these times I wont get so lucky. Has anyone had their cancer spread while on Interferon.

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archer's picture
Replies 21
Last reply 4/7/2011 - 10:39am

Ok, I was asked to report back on my wife's first visit with an oncologist.  It was full of downs and one up.

First she was seen by his PA.  Nice female, caring, asking a lot of questions and full body exam of her.  Found nothing.  Yeah!

Then the oncologist comes in and does basically the same thing.  Asked her to dress and both came back in.  Here is what he said.

Please keep in mind this was a first time for both of us... we went in scared, confused and sick (I had these symptoms not my wife)

He said that it could be a stage 3 or possibly a stage 4.  He said if it was a stage 3, it was curable and would be treated with  that in mind. (wow, I never

expected to hear that) but if it was a stage 4 it was not curable and she would have to make some decisions if treatment was worth the side effects or

would it be better to do nothing.  After that conversation, my bubbly, smiling, always positive wife was floored.  No smile, the life went out of her 

immediately, zest was gone etc.  I could immediately tell and I told her to ask him and tell him what she was thinking.  I asked her if he had scared the hell

out of her and she told him "yes".  He apologized and told her that wasn't her intention.

After they left, a nurse came in to draw blood and for whatever reason, he started talking about her father, 65 yo who had a lump in his neck.  Not really 

big she said but he came into this same oncologist and had it biopsied and the results were melanoma.  Well, after a PET scan, it has metastasized to his 

lung.  Small tumors she said.  The doc along with the father and family decided to wait since he had a strong immune system etc etc.  It has been 7 

and the last scan or xray showed the lung tumors grew but barely.  They are going to keep with the watching.  So, as she was sharing that story, I thought

to myself that if the doc knew she was telling that, maybe she'd be in trouble but we were glad she shared that because it became the positive point of

out time at this place.  So, we don't know what to think of this oncologist.  We are going to see another one Tuesday that says he specializes in 

melanoma.  At least it will give us something to compare to.

My thoughts...

1. Please share your thoughts with us on how this first encounter strikes you

2. How do I get this sick feeling in my stomach to go away.

3. How do I get my mind to quit racing and always imagining the worst

Thank you all for your replies.  I look forward to reading them.

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cheryl brodersen's picture
Replies 9
Last reply 4/7/2011 - 1:31am

How do you know when to stop chemo? My husband is Stage IV, has been for 2.5 years and last year underwent 19 treatments of DTIC. Now has just wrapped up 6 treatments (2 rounds) of abraxane/avastin (the breast cancer drug) and gets scanned tomorrow to see what effect if any the A/A chemo has had. This is 25 rounds of chemo. He is pretty sick most of the time. Quality of life sucks.

So tomorrow, if the tumors are 'stable' or shrinking just a little, they are going to want to keep going with the chemo. When do you call it off and switch to another drug? He is BRAF positive and has never tried ipi or any of the MEK or GSK or that other new one...Evesia? Whatever, I just read about it on here! When do you make that call? What is the criteria that you use? It's so scary to take matters into your own hands. We love our oncologist--his oncologist, I should say--but I know he is going to want to keep going with the chemo. I'm afraid that it's going to make him too sick to ever bounce back. Does that make any sense?

Also, where do I find the BRAF drug trial info? Sorry, I tried to google it, but didn't have much luck. I appreciate any help anyone can give me. I want us to make the right decision, to be proactive, but I would love to hear some other people's thoughts on this.

Thanks to all of you!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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Replies by: premedy

Help to prevent the risk of melanoma. Please sign my petition to the RI Legislature to support House Bill 5627 to prohibit minors under the age of eighteen from going to an indoor tanning facility without a Doctor's prescription. This bill failed last year due to lobbying from suntan parlor owners and the Indoor Tanning Association. Research shows that there is a 75% increase in the risk of melanoma from exposure to UV radiation from indoor tanning. In 2010, it was estimated that the indoor tanning industry generated 2.6 billion dollars.
My petition to stop skin cancer in ri is on the change.org website. You can access the link with http://www.change.org/petitions/stop-skin-cancer-in-ri. My husband was diagnosed with Stage III melanoma in 2006 and lost his courageous battle twenty months later. My thoughts and prayers reach out to each one of you touched by melanoma. Never give up and never give in.

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EricNJill's picture
Replies 13
Last reply 4/7/2011 - 12:48pm

When Eric began the BRAF/MEK combo we knew there was a chance that the Melanoma would find a different pathway and come back, unfortunately that seems to be what is happening. We just didn't expect it to happen so soon... When Eric started the treatment his LDH level was very high and throughout the treatment is was dropping until 2 weeks ago...it's began to climb again and the level in his blood today was as high as it was when he first started the treatment.  Because of this and the changes in his leg, the Oncologist believe that the treatment is no longer working. Eric was pretty upset and asked to be left on for another week to give it a chance and the doctor agreed to do so. He had a clinical trial consultant come in and talk to us about starting another treatment. I will be spending a lot of time this week researching that as well as other options.

The new trial they are offering him is the Eisai E-7080 that I saw someone else post about on the forum. 

JillNEric in OH

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KellieSue's picture
Replies 3
Last reply 4/6/2011 - 9:44pm
Replies by: jag, King, Fen

6 weeks on B-RAF and first scans today!

Slight shrinkage.! Whoop! Of course I would have loved to hear, "We can't find anything on the scans. "  Ha! Since I know that
won't happen I'll take some shrinkage.

My neutrophil count was kind of low at 1100 and it has to be at 1500 per clinical trial rules so I have to stop taking it for a few days. I'll have another blood draw on Friday, not likely that it will go back up there in just 3 days, but here's hoping. (Guess I'll make some liver for dinner. ;)

My dr. tried to convince them to let me keep taking it since I'm asystematic but it was a No-Go. My lymphocytes are still pretty high, likely the IL-2 still floating around in there maybe?
So.. just waiting around now. Dr. wasn't worried about being kicked off the trial, this is just a hiatus.

I feel pretty good. Side effects include some intermittent diarrhea, some acne that just started the last fews days and dry skin.

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Yesterday my husband had his first two week doctor's appointment after beginning the GSK BRAF/MEK trial at UCSF.  We thought that some of his skin lesions looked smaller, but were afraid it was just wishful thinking.  The doctor confirmed that our observations were not merely wishful thinking. He looked at one lesion and said "You call yourself a tumor?"  Apparently, our doctor believes in trash-talking tumors.  We both left feeling more hopeful than we have in a long time.

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Anonymous's picture
Anonymous
Replies 27
Last reply 4/18/2011 - 12:53pm

On Friday I joined your ranks. Last summer, I noticed a mole that had grown up, like a skin tag. I didn't like it but waited until my annual physical to ask my family doctor who thought it was nothing. I was seeing a dermatologist for other skin issues so I asked my dermatologist. She didn't think it was anything. When I was back for another treatment of the other skin issue I asked to have it removed for cosmetic reasons which happened on March 25th. Mar 31 I get called backed. The pathologist grapped my dermatologist in the hall to say that the benign lesion was melanoma. I met with my dermatologist on Apr 1. She didn't have the pathology report yet but told me that it was 1.45 mm and level iv. She had already requested blood work (for LDH), CT-scan and SNIB. Meeting with surgeon is tomorrow and CT is Thursday evening.

Like many who are newly diagnosed, I'm scared but I'm trying to manage my emotions until the facts are in. Anyone in Ottawa with melanoma treatment experience?

Be Not Afraid-God is with you always Stage IIIa

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Just ran across this and thought it may be of interest.

http://therapy.collabrx.com/

 

From the Cancer.net website:

Targeted Therapies

This section is the result of a collaboration between ASCO and Cancer Commons – Melanoma and is updated dynamically.

As mentioned in the Treatment section, a patient’s treatment plan can be tailored or personalized based upon known subtypes of melanoma. This approach, known as targeted therapy, is designed to target or inhibit specific genes or pathways that contribute to melanoma cell growth. This is a major focus of research for melanoma.

Patients can learn more about these genes and pathways by using the Targeted Therapy Finder, a search tool that provides information on possible therapies and diagnostic tests based upon a patient’s melanoma diagnosis. Patients are encouraged to use this tool and share the results with their doctor when making treatment decisions.

The information provided through this resource is maintained by the Cancer Commons – Melanoma editorial board.

http://www.MelanomaResources.info

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sharmon's picture
Replies 1
Last reply 4/6/2011 - 7:54pm
Replies by: King

Hi everyone,

We just got the news that after 14 months his tumors are growing again,  He is Braf negative,  has tried luekine,  ipi  with chemo, and bio chemo,  the gsk mek trial is opening combo trials using chemo and MEk together and they want to move him into one of those right away at MD anderson. 

Does  anyone have any ideas.

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Manubuzzi's picture
Replies 19
Last reply 4/11/2011 - 6:29pm

 

Greetings to all,
 
I wanted to know the general and overall opinion on the steps that my family is taking to fight against my mother's illness.  Her first symptom appeared en January of this year, it was limited mobility and paralysis of her arm and leg.  After some tests, she had an operation (2/24) and a tumor was extracted from her brain. Biopsy Diagnosis: Melanoma.  PET Scan results (3/29):  2 brain tumors, 1 tumor in the liver, and 1 adrenal gland.  Since the operation, my mother has been very weak and unable to walk.  She had lost her ability to speak, but recuperated it quickly.  Now, for the last few days, she is starting to again have difficulties with her speech and it's getting worse.  We aren't sure of the real cause of this new symptom, given that it has been 40 days since the operation and we hadn't seen any type of relapse or problems until recently.  Now, the doctor has tripled the Corticoid dosage to see if it helps improve her speech.  
 
My mother is afraid, and her five children, myself included, are terrified.  Dr. Silva, the best specialist in Argentina, with whom we had a consultation yesterday (4/4) said that our first step is Temodar and radiation.  Then, depending on the results, we could choose between 2 treatments for the immune system (the names of which I do not yet have.)  I am writing today to hear some feedback of personal experiences with Temodar and radiation, the side-effects, the effectiveness, the dosages, etc.  
 
I can't seem to find the words to gove her strength or comfort.  She had been a completely healthy person until 3 months ago.  We were not prepared in the slightest for a situation like this.  We are devastated and desperate.  Any comment, word of wisdom, advice, or help, would be much appreciated.
 
Thank you,
 
Manuel
Son of patient 

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emilypen's picture
Replies 1
Last reply 4/5/2011 - 8:17pm
Replies by: Terra

Hi All,

What a journey the last few months have been. My husband has been Stage IV since June 2010 and after being randomized to chemo on the Roche PLX 4032 trial he started on the MEk & PI3K trial in Sept. 10.

Six months later and 15% reduction of the tumours he had a bad reaction to the drug ( a all over body rash) and was taken off the study for 3 weeks. Unfortunately during that 3 weeks one of the tumours in his back decided to start growing again and this time grew right towards his spinal cord. We found out it had only grown 14% which meant he could have gone back on the study but because it got so close to his spine, he needed emergency surgery. The study does not allow you back on if you have an "event". Talk about frustrating!

Now 3 weeks after surgery he is almost finished with 4 treatments of stereotactic radiation ( to take care of any remaining tumour near his spine) and he has been allowed to crossover to the PLX 4032 side of the study through the expanded access program. Our Oncologist is hoping it will work, there are some concerns because he was on the Mek drug that it might not.

His plan is keep my hubby on PLX until it fails and then start Ipi (Yervoy) if there is not anything else better at that time. In Canada Ipi is still on trials as our FDA has not approved it yet.

Anyone else go from a Mek to a Braf inhibitor?

I'm also wondering how long those of you on PLX have been taking the drug with success? And has anyone gone from Braf inhibitor to Ipi? Outcomes?

Thanks so much,

Emily

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TracyLee's picture
Replies 7
Last reply 4/21/2011 - 3:37am
Replies by: nicoli, Anonymous, Carol Taylor, TracyLee, Carmon in NM, Sharyn, Terra

Hello,

I have a scalp graft that was successful last May. Since then I've had 2 recurrences and 2 pinch graft surgeries. I'm now having a scalp resection to cover the bald spot, as I need radiation. I've also got nodes back in my neck, despite a neck dissection last June.

I'm so discouraged! For whatever reason, this surgery next Monday is bothering me more than any of the others, including the original graft which was no fun whatsoever. I'll have 2 surgeons on Monday: plastic surgeon working on my scalp, and my regular oncologist doing bumps under my scalp and the neck nodes.

Everything has spiraled down so quickly that I can barely breathe. I'm going today for an ultrasound guided fine needle biopsy of my neck (to confirm what they all suspect). I can't find much info about what to expect on the ultrasound, other than it will take 2 hours.

Has anyone done radiation after head grafts? What do I need to do to prepare myself? I work full time, and shudder at the time I'm going to miss from work once I start radiation.

I'm still Stage III, so I guess that is a ray of sunshine in a gloomy outlook.

Thanks,

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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