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.

Expand/ Collapse Topic
 
Replies By
View Topic
Tim--MRF's picture
Replies 12
Last reply 1/24/2011 - 4:16pm

Roche/Genentech/Plexxikon just announced that their BRAF inhibitor that has been so much in the news hit it's primary endpoints in a Phase III study.  They have gathered enough data to show that the drug provides both Progression-Free Survival (PFS) and Overall Survival (OS). 

The best I can tell, here is what we know about this drug:

--it is applicable only to patients who have BRAF V600 mutation, which is about half of all melanoma patients;

--of the patients who have the mutation, about 60% will respond to the drug (vs. 14% who respond to IL-2, for example); and,

--the average duration of response is about 7 months.

This is a major win for patients, but also demonstrates how much more has to be done in this field.  We need to find ways to extend the duration of response (probably through combining this drug with another drug) and also to find more options for patients who do not have the BRAF mutation.  Several early-stage trials are ongoing that address these two needs.

Here is the press release:  http://www.roche.com/media/media_releases/med-cor-2011-01-19.htm

 

Tim--MRF

Login or register to post replies.

ockelly's picture
Replies 2
Last reply 1/20/2011 - 11:17am
Replies by: EmilyandMike, MaryD

A friend just sent me this link.  The article is very interesting... click the link to cancercommons at the end.... then Melanoma Therapy App.
http://wtop.com/?nid=104&sid=2236525

Kelly

Login or register to post replies.

Browneyes's picture
Replies 4
Last reply 1/19/2011 - 8:34am
Replies by: Browneyes, lhaley, Janner

Hi, I'm new to this board. I watched a mole grow for - I don't even know how long- maybe a year. It was kind of cute - a heart shape, oddly over the top my left breast kind of where you think of your heart being. It started to itch last summer. My husband told me to get it checked. This was denial on my part, I put it off. I went in a couple weeks ago to my family doctor and asked him for a full body scan for skin cancer. He looked at the mole and agreed - set me up with a Derm in the same clinic. I got the full body look-over and then asked the Derm if he was taking it off - he said Oh yeah. I asked if he thought it was Melanoma and he looked me in the eye and said yes. He did a excision biopsy and I waited for 5 days to hear about the biopsy and did pretty well waiting. Luckily I had done some reading the night before, so I was prepared for 'Melanoma' and the excision. They called yesterday and said yes, it's Melanoma. I had to ask what stage and the clerk said 0 - In Situ. I asked some other questions and she didn't say much but I will have WLE and she set up a 3 month appointment. She did say there would not be any other tests. 

I've done ok with this considering how much I read over the weekend. I decided not to be upset until I found out the stage at least, but that didn't prevent moments of abject fear. I have read extensively (including some on this board and I'm sorry to everyone who has to go through worse stages of this cancer) and it is scary. I feel very lucky for this diagnosis and VERY nervous about the rest of my skin and future health. I'm just past 50, a smoker so I have plenty of other stuff to worry about. And I'm in the process of quitting that. 

I am composing a list of questions for Friday when I get the stitches out and will be asking for copies of the biopsy report and office visit. So my question to anyone here - is this all standard? They tell you yeah, you have Melanoma, but you're stage 0 so there's nothing to worry about and then turn you loose after a wide excision?    Aside from asking the depth, the stage, the spread and what the WLE entails, what else should I be asking the Dermatologist? Something that really bugs me is... if you get Melanoma once even if it's stage 0, why is it not standard to do extensive testing right off the bat to see if you have it anywhere else? Like why don't they give all new patients a PET scan or something? It seems from some stories here that extra testing early might help catch some tumors in earlier stages. ? I don't get it. 

Thanks for reading this. My hub went away on business for the rest of the week and I'm kinda sitting here worrying about various things like what vitamins you can take that won't make the cancers grow more, are the UV rays coming in thru the skylights in the room where I sit every day, should I have some other moles taken off, should I ask for a chest xray, etc. Thanks for any replies. 

Login or register to post replies.

Linda/Kentucky's picture
Replies 6
Last reply 1/18/2011 - 10:23pm

Although it has been a while since I have been on here due to things taking a bad turn, I just wanted to post one last post in memory of my loving husband John.  John was carried by angels to his home in heaven Tues Jan. 11, 2011 at 11:15 p.m.  He struggled with this ugly disease almost 14 months.  We said in the beginning of treatments that we would pray about what direction to take and never look back and wish we had changed something or done differently because we KNOW  God led us the way He wanted us to go.  Our faith stood strong throughout as John never complained or shifted blame on the Lord as to "why" this was happening to him, his response when diagnosed was "why not me, I'm no different than anyone else"  That was the kind of man he was.  I, however did question from time to time.  He only took two different treatments.  The first was high dose IL-2 which didn't do anything for him and the Ipi compassionate trial which also did not do anything for him.  I hope by him participating in this clinical trial it helped in someway with getting it approved.  I know it can/will be a successful drug for others.  It just was not meant to be for John.  As far as the side effects he felt from ???? cancer/treatment throughout was severe total fatigue/exaustion.  Even though he had the cancer in his lungs, liver, throughout his bones he took ibuprofen up until about 2 months ago.  And uncontrollable pain for 1 day.  We truly feel blessed by this.  I pray daily for all those going through this unfortunate journey and will continue to remember you all.  It's a journey nobody should have to take but if you know the Lord as your personal savior you know you have a home waiting for you in heaven with a glorified body.  The physicians on earth may not have been able to heal John but the Great Physician in heaven has wiped out every cancer cell in his body and restored him to what he was meant to be.  Again my prayers are with you all, good luck with any treatment you take, keep your head up and be encouraged that all things are possible with God~~~ 

Linda/Kentucky

Please know my intent on this post was not to discourage anybody but to encourage them to never give up hope.  I didn't!!!

  

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Login or register to post replies.

djpayn's picture
Replies 2
Last reply 1/22/2011 - 10:18am
Replies by: EricNJill, Amy Busby

im hoping that someone can give me advice about using fentanyl patches. i have been using one (100mcg/h) for about 6 months now. in the past few weeks,  i have begun to notice that by the second day of wearing the patch, my pain becomes stronger and i have wierd sensations in my legs - almost like restless legs but not quite as severe. i start taking my breakthrough meds on the second day which helps with the pain, but also relieves the sensations in my legs. i hafta take the pills the second and third day of the the patch, but once i change the patch on the 3rd day, i feel fine again.... for abt 2 days.

dont know if anyone has experienced this before but im hoping someone has some advice. i have been on a wide assortment of pain meds in the past 2.5yrs, and feel the patch works best, but am wondering if this will get worse over time. im not opposed to talking with my pain specilist about a med change, i just really dont want to. the patch has been instrumental in makin my pain and life manageable and feels like im back to my old self.

thanks for any help.

Login or register to post replies.

paleskinisin's picture
Replies 6
Last reply 1/19/2011 - 9:38pm

A melanoma warrior has moved to NC due to husbands military orders.  She is stage IV and in desperate need of a good doctor.  I was hoping to find some recommendations for her.

Thank you!

Login or register to post replies.

There is a new application created by Marty Tenenbaum, an E-commerce guy who has melanoma. Here is the link to the article as well as the application...looks interesting!

http://www.washingtonpost.com/wp-dyn/content/article/2011/01/16/AR201101...

http://therapy.collabrx.com/

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 1/20/2011 - 11:49pm

I have some new liver mets and was wondering what are the most effective treatments for liver mets.  I do not think they are good candidates for surgical removal, it is more multiple areas of uptake spread throughout the liver.

Any ideas?

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

Login or register to post replies.

Linda J's picture
Replies 2
Last reply 1/18/2011 - 8:59pm
Replies by: Carmon in NM, LynnLuc

I just was about to start th braf/mek combo trial this week when the routine MRI showed 5 small brain mets-the biggest is 1cm (is that still small)? The pet scan also showed activity in my bones, spine and nodes, along with the 20 subqs that i have been getting since mid December. The plan right now is WBR this weekend, then chemo until the braf trial that targets the brain as well opens up in Canada in six weeks.
Is it a good sign that the Mel isn't in any organs other than the brain? Are bone mets bad? I feel like the Mel went totally crazy within the past few months as I had a clear pet scan in august. Am I too far gone? Can I still slow it down and beat it?? I am 31 and have a 2yr old miracle son. I told my doctors that I am going to be one of those miracle patients that they tell their other patients about.
I would really really love to hear some success stories from those of you who have had brain and bone mets. I need some reassurance that I can still beat this despite how aggressive it seems to have become.

Login or register to post replies.

Insert Generic Inspirational Motto Here

Login or register to post replies.

Tracey FL's picture
Replies 2
Last reply 1/18/2011 - 1:04pm
Replies by: Sharyn, KatyWI

Mom is going to MD Anderson on the 27th for a consult on the ipi.  She is stage lV brain, lung and multiple mets in torso.  She has 4 more WBR treatments then off to Md Anderson.  I would like to know how often the treatments are and how are they given?   Is this a trial with different arms that you don't know if you are getting the drug or not?  She seems so week now and is over 70.  She has done two different trials without success, both vaccine types the last one being PD-1 then chemo.   What a strong gal she is but in the last 3 days I have seen such a change in her for the worst.  Could this be from the WBR?  Thank you all for your help with my questions.

Tracey

Login or register to post replies.

KatyWI's picture
Replies 6
Last reply 1/22/2011 - 2:10am
Replies by: kylez, jag, KatyWI, NicOz, MaryBZ, Janner

It looks like the cyberknife I had on my brain in November was successful on 3 spots and not so much on the fourth.  After three doses of Ipi, it's swelled up and "looks" like it's growing (though as we know know with ipi you can't really tell initially!).  The plan is to remove the offending brain met in a week.  I'd really like to hear from some of our craniotomy "experts" (John?  Nic?  How many have you guys had between the two of you - twelve or something!  j/k, but I know it's a lot.)  Can I have some advice?

What should I bring to the hospital for "comfort"?  What should I have prepared at home?  I know the doctors will "tell" me, but how long might I *really* expect to be useless/recovering?  Anything else I should know?

Thanks, I appreciate it.

KatyWI

Just keep going!

Login or register to post replies.

Linda J's picture
Replies 3
Last reply 1/18/2011 - 6:55am
Replies by: Fen, Vermont_Donna, Cate

Well, after routine scans for the combo trial I was supposed to start on Wednesday, it turns out I have 5 small mets in my brain which puts that plan on hold. I have had no symptoms of the brain mets. I also had a clear Brain MRI in august. I am scared at how quick it is moving.
The PET showed spots in my bones (arm, shoulder, leg, spine) as well as nodes and subqs in my hips and legs.
The goal is to do WBR this week, start a chemo to stop the aggressiveness and then get into a braf trial that is opening up in Canada in six weeks that also targets the brain.
I am devastated. But hopeful, but scared
I am 31 and I have a two year old who needs me to be in his life for at least another twenty years.
Have people lived through worse situations?????????????? Can I still live????

If you would like to get hold of me directly, please email at lindajoyt@yahoo.ca

I need some encouragement today :-(

Login or register to post replies.

filmer's picture
Replies 15
Last reply 1/20/2011 - 10:01am
Replies by: filmer, Charlie S, LynnLuc, King, Anonymous, Vermont_Donna, NancyD

I'm a 60 year old in great physical shape...except for the melanoma. I am looking for someone in a similar situation, or someone who can give me advice on my immediate path to prevention of a recurrence.

I was diagnosed with melanoma on my right calf in Oct. 2008. It was removed  by wide excision and my sentinal lymph nodes (right groin)  biopsied. The biopsy results were negative. 

Recently, I noticed swelling in the groin lymph nodes that were biopsied. I had surgery on dec. 8, 2010 to explore, and if necessary remove affected nodes. Melanoma was found in one node and a few others were suspect and were removed. 

Now, my surgeon and a medical oncologist he recommended at Mt. Sinai in Miami Beach have recommended Interferon treatment. Unfortunately, it did not seen a very palatable course of action due to the 3-5% success rate and the debilitating side effects and damage caused by it.

To get a second opinion, I have been to the Moffitt Cancer Center in Tampa, Fl. This is where my confusion starts.

The Dr.'s at Moffitt have a different philosophy: They conferred after reviewing all my records and tests and decided my recent surgery was "incomplete". They want to go back into the same area and "clean out " all the lymph nodes in my groin AND my pelvis on Feb. 10. My problem here is that I do not feel healed from the recent surgery (I still have a drain 6 weeks later) and they tell me there is a 30% or better chance of  serious "wound problems" with this surgery. I need some help with my decision . Has anyone out there been in my shoes?

Many Thanks!

Login or register to post replies.

Pages