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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Diana C.'s picture
Replies 1
Last reply 4/7/2011 - 9:03pm
Replies by: MichaelFL

Dana Farber News includes a new story on ippi. I hope this link works   .http://www.dana-farber.org/abo/news/press/2011/fda-approves-new-drug-for....

 

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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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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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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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Have been Ned since January 30, 2006 due to isolated limb perfusion and Temodar.  (lymph node dissection and  50 weeks of interferon)

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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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claudia-uk's picture
Replies 7
Last reply 4/6/2011 - 7:08pm

My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

And he does barely eat anything.

Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

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Peter L's picture
Replies 1
Last reply 4/6/2011 - 5:45pm
Replies by: MichaelFL

Howdy Everyone...

If one knew from pathology report that their mitotic rate was 2, would there be any way to then use that number to calculate their own tumor doubling time ?  Maybe it's way way more complicated than this but I thought I'd just ask anyway.

 

Regards, Peter

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Lavge's picture
Replies 0

Does anyone know how quickly a melanoma can evolve after a mole has become itchy and sore?

The reason I'm asking is that about 2 months ago a mole on my back started itching. I saw my doctor about a month ago but still has to wait 3 more weeks before I can see the dermatologist. I've now noticed that it's changing rather quickly. I don't know how long it has been changing for as being on my back I haven't wantched it much before it started itching.

I'm now really worried. I have loads of moles and some clearly growing. i have no family history, but is fair skinned, burns rather than tans and was repeatedly burned as a kid.

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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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I finally made it to MD Anderson this week for consultation with Dr. Falchook. My creatine level was elevated and kept me out of the pi3k trial I wanted. He  told me the next best option was Avastin & Revlimed. It looks like I start on April 14th for first infusion then go back every two weeks alternating with revlimed.

Hopefully someone can help.

Thanks for all your help,

Rocky (Stage IV Liver Mets)

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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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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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jenniperry's picture
Replies 23
Last reply 4/5/2011 - 10:16pm

Miss you baby!  I can't believe what melanoma does to someone.  I was so angry at the cancer in your body when you died.  It's so unreal how bad it can get.  My heart breaks for those who are suffering this disease or are caregivers of those suffering.

Cherish every day you have.

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