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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mel123's picture
Replies 34
Last reply 12/26/2012 - 11:08am

I'm curious about how many of us have a family history of melanoma; I personally feel like any cancer is part genetics, part environment, but I thought an informal poll of the melanoma community might be telling. I have a family history, but also have gotten sunburned several times and used tanning beds,  and I'm sure that there are people who only had one of those factors, or maybe neither. 

"For God has not given us a spirit of fear, but of power and of love and of a sound mind" 2 Timothy 1:7 melwithmelanoma.blogspot.com

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dleonard's picture
Replies 7
Last reply 12/19/2013 - 12:55am

Has anyone discussed Sylatron with their doctor?  Is anyone taking it, now?

I would very much like to chat with people about this med. 

I can be reached on my personal email, at davidleonard2@Verizon.net, or on my cell phone, at 212.289.0087.

Thanks!

david

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_Paul_'s picture
Replies 12
Last reply 12/18/2012 - 7:28pm

I just found out this morning that I have been accepted into the GVAX trial at Johns Hopkins!

I originally tried in Sept. but the MRI found a tiny enhancement on my skull under where the primary was. I don't have the results of the second MRI that was taken just a few days ago, but apparently they are confident enough that it isn't a skull met that I can be in the trial.

Who knows if the trial will help me. What I do know is that it feels damn good to be doing something about it, plus regardless of the outcome these trials help expand our knowledge and get us closer to a cure. Even if something doesn't work its helpful since we know not to pursue that avanue further.

My heart goes out to all the people on this site and you are all in my prayers.

- Paul.

To exist is beyond fantastic.

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JakeinNY's picture
Replies 16
Last reply 4/8/2016 - 1:52pm

Do yourself a favor and look into the ketogenic diet. This is not some crazy thing that has no history. It has been studied and undergone some small trials and is currently going thru many more trials. Check out the following links:

 

http://www.nutritionjrnl.com/article/S0899-9007%2812%2900186-4/fulltext

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

http://www.nutritionandmetabolism.com/content/4/1/5

http://www.ncbi.nlm.nih.gov/pubmed/7790697?dopt=Abstract&holding=f1000,f...

http://melanomamaverick.com/finally-able-to-cry-emotional-from-ketogenic...

 

The first four links come from reputable sources.

The last link is related to melanoma and you can see my post in it but of course I don't know if it's legit, as it is just someone's blog.

You can talk to your oncologist about all of this.

Best  wishes for a long life.

Jake

Do the best you can.

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susanr's picture
Replies 13
Last reply 12/22/2012 - 7:21am

You all may not know me.  I was not one of the "regular " posts.  I was not one of the "known patients or caregivers" on this forum.  I lost my brother Peter on 12/6/2012 to this horrible beast Melanoma.  I did not think I could re-visit this forum but needed to say good bye formally and wish you all well and hope to beat this very aggressive cancer melanoma.  He was only 45.  He had a wife, 4 small children, parents, and siblings.  He fought 3 hard years.  Nothing seemed to work.  We hit one brick wall after another. My brother never once said " why me", he never cried or complained.  Its sad to say that I am in the medical field and still could not save him.  I was a new mom at the time this beast was brewing in him.  He thought he had a splinter on his foot that was not healing.  I did not pursue anything for him thinking its just a splinter.  By the time it clicked in me...it was to late now that I look back.  I feel that I did not fight hard enough for him and hope he forgives me.  I was involved by being a new mom.  Normally I would be the biggest  "Pain" to my family for going to the doctor.  You all probably agree with me that nobody never expects this to happen.  I still feel like this is a nightmare but when I wake up...its not. I can say that my career in the medical field is over... I am tired of non-sense that the medical field brings and watching people suffer and you can't control it.

I feel so bad for any parent that has to bury a child.  It destroys me that my parents had to go through this.  I also feel for the poor parents of those children in Conn. that have to endure this nightmare.  My brother loved children so I know he is teaching them to fish right now....hoping he ain't smoking a cigar in front of them.....LOL !!!

During the last week of my fight for my brother one person on this forum was such a great help....and that was Mr. Charlie himself.  Charlie, I hope you read this and understand how much I appreciate your help.  I have this feeling that you know when somebody on this forum really needs an extra shoulder to lean on.  I kind of knew what the outcome was going to be but did not give for him.  The night before he passed, he told us that he was finished with doctors and hospitals.  I can at least move on knowing that we did all that we could under his wishes.  Charlie.....Thank you.  You are great!!!!!

To all the rest on this forum, Please be there for everyone.  I read some of the posts and there are some of us that really need that support form all of you on this forum battling this cruel, nasty, cancer.  Someone can post a topic and have over a hundred views but not one comment......even if you don't know the topic....just write that you are sending a thought or a prayer and that can help.  There are many of you that I have been following and have cried over some that have passed on.....My brother was not a member on this forum but I was and please support all who have died from this disease and who are still battling this beast.  He is now with all the angels.

Best wishes and keep fighting !!!!!!!!!!!  Lets find a cure !!!!!!!!! 

Susan

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ksg1111@sbcglobal.net's picture
Replies 5
Last reply 12/18/2012 - 9:25am
Replies by: POW, buffcody, Gene_S, Anonymous, Josh

I'm scheduled for my first Yervoy treatment, and I'm nervous. What should i expect form the oncologist? Advance prescriptions for possible side effects? Or?

I think my oncologist knows his field, but isn't communicating the patient side of things. How do I know when another doctor would be better, and how important is having someone in the area I live in versus a hundred miles away  for that process?

Thank you very much.

 

 

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Sherron's picture
Replies 5
Last reply 12/19/2012 - 11:34am

I have heard nothing from her and getting concerned.

Take Care,

Sherron, wife to Jim FOREVER

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Ali's picture
Replies 17
Last reply 12/19/2012 - 9:07pm

Just wanted to let you know how things are going for me.  I am happy to read some good reports from a lot of you.

A brief history:

3b 2007, 9 months of interferon

Feb 3c 2011, surgical excision (there weren't as many clinical trials out there for in transit lesions at this time, dang it!) watch and wait

Jan 2012, routine scans show multiple subqs, liver lesions, bones lesions

Jan 2012, radiation to femur and ichium

Feb 2012, high dose IL-2.  All 6 weeks.  Mixed response.  Many tumors gone by the end, many new tumors found in...

June 2012, 100ish subq tumors, 25 brain mets

June 2012, IPI and Temodar.  Within days tumors obviously shrinking.  Diarrhea also within days.

Sept 2012 scans show no brain tumors, only 4 tumors left in the body.  I only had one dose of IPI because of diarrhea, continuing on Temodar

Nov 2012 scans show resolution of one tumor, growth in the other three

My first option was an Anti-pd1 trial.  Just got back from Oregon trying to get into the BMS phase 1 comparing those who have had IPI and those who haven't.  i was rejected!  Because I couldn't finish all my doses of IPI (diarrhea).

This is lose-lose.  I would have responded, and they could have marked that response on their charts.  So I think we will radiate a couple of these and see if my immune system can pick up on the remaining tumors.  If that doesn't work we will try something else.  I am also BRAF positive (luckily), but I am trying to get as much immune response as I can before I go that route. 

Has anyone gotten into a pd1 trial after taking IPI (other than this one of BMS that I know they won't let me in)?  Any guesses on when this drug will be approved, are we talking years and years?  If we ever see it as compasionate use, will those who have a braf mutation be able to use it as compassionate use, even though there is that other (zelboraf) option out there?

This is a crazy journey.  So grateful to spend another holiday season with family.  Hope there are lots more to come for all of us.

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sharmon's picture
Replies 15
Last reply 12/18/2012 - 10:02am

The Merck Anti pd 1 trial is allowing the tumor in his lung and side to enlarge, the pain to increase, and the anxiety to rise. This is less than half way through the trial and no one seems concerned. They are staying the course of the the third infusion on the 26th . They are saying it is too soon toknow for sure if it is growth or inflamation. Please pray this works like it is designed .

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nsabel's picture
Replies 6
Last reply 12/23/2012 - 12:51pm
Replies by: nsabel, POW, Janner, Josh

My father had an initial consultation with his medical onoclogist who recommended that he start Temodar  immediately and discontinue it in 2 months if there is not a positive response. If Temodar is unsuccessful  he would then start Abraxane which the Dr liked better than Taxol for him because of the lack of steroids ( he has type 2 diabetes).  If that doesnt work he would go on Zelboraf. The Dr indicated that we should try everything else first because Zelboraf is most effective if combined with MEK inhibitors but this combo has not been approved yet so we need to hope that it gets approved by the time my dad needs it. Dr. said that Zelboraf is less effective when its used on its own or when the MEK inhibitors are added later.

Does this sound right? Has anyone had any success with Temodar or Abraxane? 

Dr was skeptical that he could take part in clinical trial due to previous kidney transplant and current immune suppression to prevent kidney rejection. 

Also can someone walk me through difference between protocol and off-protocal treatement? when are decision made to try one or the other?

thanks,

Naomi

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Josh's picture
Replies 26
Last reply 7/21/2013 - 3:50pm

Hello All,

 

I'm considering one the Dr. Rosenberg adoptive cell therapies offered at the NIH that probably many of us have heard about. Both my current oncologist at Sloan Kettering and my previous one at SDSU say that Rosenberg's adoptive cell therapy trials are the best clinical trials out there right now, however, I've noticed on this forum that other than Warren, nobody has good things to say about the longer-term benefits of these trials. To be clear, I haven't yet had the blood test to see if I qualify for one of these trials and I know that they offer many different trials, but Merk's anti pd-1 drug isn't working for me, so I need to decide on a next step. Considering that Dr. Rosenberg has been doing these trials for a very long time, I'm asking to hear from some long-term survivors or friends/families of long-term survivors. There are lots of anti pd-1 NED folks on this forum, but any Dr. Rosenberg NED's out there? If not, does anybody have opinions why my two great oncologists like these trials so much?  Thanks a lot, everyone!  

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Anonymous's picture
Replies 1
Last reply 12/16/2012 - 3:54pm
Replies by: Josh

Do any of you know if being on antibiotics for an infected surgical incision will disqualify you from Merk's Anti-pd1 trial?   My boyfriend is about 5 days through the 10 day cycle of antibiotics, But the incision site is still draining and has pus, although it's not red or inflamed.    He is due to meet with Dr. to assess him for a trial of anti-pd1 for people who progressed after yervoy, and im worried having an active healing infection, and being on antibiotics will disqualify him...even though he only has another 5 days or so of the antibiotic.  I'm also worried that having a prior bowel obstruction surgery will disqualify him.  Any opinions would be greatly appreciated. Thanks in advance

"Give thanks in all circumstances"

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NYKaren's picture
Replies 6
Last reply 12/20/2012 - 11:15am

Does everyone on Z use sunscreen of SPF 30 ( or higher) on all exposed areas even in the winter? What about on rainy days?
THanks,
Karen

Don't Stop Believing

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kellygrl's picture
Replies 5
Last reply 12/16/2012 - 2:25pm

Just a quick story from a friend  who works on a cardiac floor, she was with a patient yesterday who is on Zelboraf, had 4 brain tumors, Gamma Knife & now brain mets are gone! She continues on Zelboraf for lung and liver mets, but she is doing great and was diagnosed 7 yrs ago (primary was melanoma on leg) and is 79 yrs old!! Can you believe it!?

My husband is going on 7 mos of Zelboraf and 13 brain tumors still shrinking as of Nov! :) 

Wishing you all a holiday miracle!

Kelly

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Vermont_Donna's picture
Replies 14
Last reply 4/20/2013 - 10:23am

Hi everyone,

I havent checked in here in a long while...I am 22 months NED after 4 doses of 3mg/kg Yervoy in a clinical trial. I feel so blessed after many treatments and many side effects endured over the last six years. I am however dealing with some cardiac issues (unrelated to melanoma) after having an acute stress (takot subo cardiomyopathy) heart attack in April of this year. i am no longer working and cardiologist's orders are to take better care of me!

 I hope to have time now to check in here on a more regular basis!

Happy Holidays!

Vermont_Donna, stage sa

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