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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Brendan's picture
Replies 10
Last reply 6/30/2014 - 6:20am

Hi Everyone,

I have now been stage IV for almost three years (Sep. 2011).  I have read many posts here that have helped  me through some tough times, hopefully my news will help some of you.

I started PD-1 (nivo) in December.  I just had my final scans and, thankfully, I responded.  The target met (right lung) shrunk from 4.6 sq. cm to 0.42 sq. cm (90%) and the smaller met (left lung) is gone.  

Furthermore, today I had my brain MRI and my brain is clear. I had craniotomy #2 one year ago today (June 25) and my brain has been clear since.  

Good luck to you.

Brendan

I also posted this on MIF.

 

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5dives's picture
Replies 3
Last reply 6/27/2014 - 6:23am
Replies by: Bubbles, 5dives

Hello all,

I met my surgeon yesterday and am waiting for surgery for my .96 Breslow, Clark IV WLE / SLNB.  I really liked the surgeon (Godellas at Loyola Medical Center) and felt very comfortable with the entire process. 

The problem: They can't schedule me until August 11th (original biopsy completed on June 3rd) which happens to be my first day of the new school year.  I'm a high school French teacher. 

I am struggling with the scheduling....too far away, would probably have to miss the first two weeks of school (lesion on my leg, probably skin graft) stress, etc.  Friends and family are advising me to try to find another surgeon, maybe at Northwestern Memorial or University of Chicago (which also have more comprehensive cancer centers).  

I am also struggling with the idea of making the change of surgeon, because I did feel so comfortable at Loyola.  My surgeon's exact words were (more or less): 

"Listen, doctors get sued. They really do.  If I felt that this kind of wait would negatively impact your health, I would refer you to another hospital to avoid being sued.  Enjoy your summer. Take a family vacation. Enjoy your family. We'll take care of this in August." 

ACK.  I don't know how I can wait until August, and I don't want to change surgeons, missing the first two weeks of school will be a nightmare. 

I would accept ANY advice or thoughts this group may have.  Would you wait? Or change surgeons?

Best to all of you,

Elaine

 

http://melanomadame.blogspot.com/

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Last time I saw his post, he was having issues with brain mets. Hope and pray everything is ok with him.

All things are possible through God!

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NYKaren's picture
Replies 20
Last reply 7/4/2014 - 2:14pm

Howdy all 

well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

Please wish me luck. 

FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 

Karen

Don't Stop Believing

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FYI, I posted this over at MIF, too, figured it was worth cross-posting here.
 
This is good to see, BMS is seeing such superior results for nivo vs. dacarbazine (no kidding, right?) in the Phase III trial that they are closing the trial and allowing the dacarbazine patients to cross-over to the nivo arm.
 
 
Joe
 
 

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I haven't had time to thoroughly study this report yet but it appears to be a very comprehensive review of the molecular pathways. Some of you more technically inclined will proably find it very interesting.

http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=1892&path%5B%5D=2533

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braunerk's picture
Replies 0

Does having Acral version of melanoma mean that you can't be in a PD- 1 trial since acral is different from other forms or does it mean it doesn't work? My melanoma is Acral and I want to try PD-1 as soon as I can but if it is not available I guess I need to rethink my plan.

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/25/2014 - 4:12am
Replies by: Anonymous, BrianP

I just received a phone call from one of my drs.  He just received back information on my tumor and said it had some genetic make up that puts me at a higher risk for recurrance. I don't know what that is yet- I meet with him next week- but now I  am terrified and broken -hearted and afraid this definitely means my 1b will progress.  Thanks for listening.  I just don't know what to do and feel overwhelmed.

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/4/2014 - 10:03pm
Replies by: BrianP, Anonymous, Gene_S, shanemcdonald99

Just came back from an appointment with the local oncologist who administered my chemo (I am a patient at Sloan). He told me that melanoma can possibly be cured at stage 3 by chemo but if it hits stage 4 it is not considered curable. Since the recurrence rate is so high does that just mean that dying is the only option when the scans come back positive?

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dodo's picture
Replies 3
Last reply 6/25/2014 - 5:45pm
Replies by: dodo, joelcairo, tcell

Dear friends, I've just joined the forum. I'm not citizen of USA. I am prescribed to have ipilimubab + pd-1, but unfortunately it is not available in my country. Could anyone advice if I may be aligible in any clinical trials in USA?

Thanks

Dodo

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/24/2014 - 11:50am
Replies by: Janner

moderately atypical nevus with halo immune infiltrate.  eurgh?  I have dealt with atypical nevi before but what is halo immune infiltrate?

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Anonymous's picture
Anonymous
Replies 8
Last reply 6/25/2014 - 1:36pm
Replies by: Anonymous, Scuba Doc, rosa1

Rumor from a reliable source says MK-3475 (pembrolizumab) could be approved as early as mid summer. 

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melfighter's picture
Replies 8
Last reply 6/24/2014 - 3:44am

Hi all,

My husband has been on the combo for 4 months now. Since Feb, he has had 3 rounds of radiation (WBR, spine & now his hip). Recent scan showed improvement in all soft tissues tumors but increased activities in the bone. We are waiting for the approval for Xvega to strengthen the bones.  We were told that he is considered very advanced in stage 4, since he has "innumerable" tumors throughout his body. My question is, has anyone had success with treatments being so far advanced in stage 4?  

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pigs_sty's picture
Replies 4
Last reply 6/23/2014 - 12:30pm
Replies by: pigs_sty, ecc26, Patina

My wife possibly has do undergo wbrt shorlty due to new Mets appearing on latest mri. We are both very concerned and was hoping some of you might be able to share your experiences of treatment both during and in the following months. Thanks

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degood's picture
Replies 4
Last reply 6/25/2014 - 4:45pm

Just got home from eye specialist. His opinion is totally diffrerent from the melanoma specialist!! We had finally got some answers and ready to start a clinical trial with ipi and a vaccine. Thought things were finally starting to move. We go to the eye specialist and he checks my husbands eye and now decides it is melanoma after a 3 month wait. We tell him the situfation with the melanoma spreading and that he is to start treatment shortly and his answser is he is abouth to throw a wrench in all of that! Really no further explanation other than info on the placque treatment or removal of the eye.  the eye doc says it has spread from the eye and not from the original melanoma from his back. The melanoma specialist told us that she feels the eye should wait and we need to start treatment for the rest asap. At this point we don't know what to do who to believe and are totally at a loss.  I guess we have to let the doctors fight it out and go from there. All I know is they are wasting time and my husband is getting worse!! Any ideas? Thanks!!

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