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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joy_'s picture
Replies 8
Last reply 9/27/2013 - 5:44am
Replies by: mdewees, Rocco, kylez, joy_, Gene_S

Hi all.  My husband is starting a trial that will begin with 6 weeks of vem. followed by ipi every 3 weeks.  I noticed that the dosage of the ipi will be 10mg/kg and that the FDA approved dose is 3mg/kg.  I understand what the side effects are at the "standard" dosage but am wondering what we should expect at the 10mg/kg.  Should we expect the same side effect just more intense?  Should he prepare to be out of work during this time?  Is there anyone else here who has been on a trial at this dosage?

Thanks in advance for any advice.

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JoshF's picture
Replies 8
Last reply 9/27/2013 - 12:20am

So had PET scan and Brain MRI yesterday. The brain MRI was clear but PET showed activity in right lung mid lobe. Surgery was scheduled for Monday they now pushed until Tuesday so I can do a CT of chest tomrrow. Surgical oncologist nurse didn't give me a ton of info other than we need to do CT of Chest. From there we'll determine whether or not a biopsy is required, it's nothing and/or we'll watch & wait. I know PET Scans can be sensitive but anyone out there have any experience or information they can share? What is likelihood that is nothing? Why didn't any nodes light up? I'm not saying...really praying it's not Melanoma...but how would it just show up in lung. I know progression of melanoma is tricky....just throws me for a loop. I also wonder why they just don't go in and do a biopsy?I just has scan at end of Feb...beginning of March-all clear. LDH which onc told me would help measure organ metastasis was perfect just weeks ago.  Confused and frustrated again. Guess I better get used to it.

 

Josh

Let's work for better treatments....for a cure!!!!

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JoshF's picture
Replies 19
Last reply 9/26/2013 - 12:29pm

Hello fellow warriors!!! I'm in a really bad place and need to hear positive stories from some of you. If you've read my bio and/or recent posts you know that I just had 2 lesions remvoed from under scar from previous surgery for melanoma. I was told just weeks ago for 6 month check up that all was great and they didn't want to scan anymore and I was single digit chance of recurrence. Now I'm facing more surgery which is fine but I'm consumed with anxiety and fear that it has spread beyond local area (cheek). Since it's on my face/head I keep wondering if it got to brain and I don't know it. Bloodwork for LDH was great 2 weeks ago but I've heard that's useless...and I was seeing melanoma specialists? I'm baffled by the lackadasical approach to my surveillance. I saw Dr Kaufman at Rush until fall of last year when he dropped my insurance. I had scans in June/July 2012 as well as Brain MRI which was good. Then I had scans of neck down to pelvis in Feb of this year...all good! Would've had scans a few weeks ago but as I mentioned previously, onc didn't think they were necessary. WTF!!!!!

Please, some of you tell your stories of good news and hope. I've been on this site for over 2 years and sit in background, follow many of you and pray for all. I typically stay very private but it's harder the 2nd time around for me and I can't understand why. I'm not pessimistic and will fight this beast with all I got but right now I'm broken and not afraid to admit it. I know many of you have been through alot and I appreciate your courage & strength...Charlie S, Jerry from Fauq, Matt F, Gene S, Lauri England, Andrea Heitker and so many more....

I wish you all the best in your battle! For those that are NED....STAY THAT WAY!!!! Don't forget you're the best advocate you have in your fight.

 

Josh

Let's work for better treatments....for a cure!!!!

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john partrick michael murphy's picture
Replies 5
Last reply 9/26/2013 - 12:06pm
Replies by: Anonymous, Harry in Fair Oaks, Brendan, Mat, JerryfromFauq

Still doing well on the GSK BRAF/MEK combo trial at MGH. Year and a half without adverse affects. Tumors are 93% gone. Getting a few wild type melanomas but they get cut out in knife fights. I took my first dose on December 28,2010. I am so grateful.

The history of the world is the battle between superstition and intelligence.

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Richard_K's picture
Replies 2
Last reply 9/26/2013 - 9:16am
Replies by: Tim--MRF, Tina D

There was a very successful 5k at the New Jersey Miles for Melanoma today. After a night of heavy rain, the sun came out and dried the course, helping many to get personal best times. I'm not sure if it was a personal best, but Tim Turnham "Tim--MRF" took first place in his age group. Congratulations Tim!

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Junk1962's picture
Replies 6
Last reply 9/26/2013 - 8:23am

If  you read my past post my husband was diagnosed with Melanoma with an unknown primary Stage IIIc - IV back in June.  Though he is currently NED the size and depth of the tumor was extremely large (15mm?).  We opted to take part in a clinical trial at DFCI for Yervoy.  He got the 10mg dose. He had his first infusion about 2 1./2 weeks ago and had no side effects.  He was scheduled to go in for his second infusion next Tuesday.  Now, guess what - they cancelled his arm of the trial!  They had a few deaths in this arm of the study and decided against continuing this arm of the trial!  There are two other arms - a 3 mg yervoy and inteferon.  They will only allow the 10 mg to be transferred to the inteferon arm!  Doesn't seem fair to us but, that's the only option!  After only one dose of yervoy we are very confused on what to do!  It was such a hard decision to go with the 10mg yervoy and now we are back to square one!  Is it really worth doing the interferon at this point?  Any advise would be appreciated.

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Shelby - MRF's picture
Replies 4
Last reply 9/25/2013 - 7:19pm

Dear MPIP Community,

The reason for this post is two-fold. The first is to tell you about three upcoming educational symposia that the MRF will be co-sponsoring in the next few months. The first will be in Denver on October 26, 2013. The dates for the other locations (Pheonix and Miami) will be announced soon. We are participating in a pilot program where we will combine patient education with physician education. Both sessions will be led by expert medical oncologists. The patient session will highlight melanoma diagnosis, prevention and treatment information. At the same time a different oncologist will provide a presentation to healthcare providers, allowing them to earn continued medical education hours (CME). During the afternoon session, the patients and the healthcare providers will come come together and the content will focus on helping the two groups identify and overcome communication and other barriers to optimal care.

This leads me to the second reason for this post - a request for you to share with me some of the barriers to care that you've experienced. What are some communication barriers have you experienced with your healthcare team? What about other barriers to optimal care that you've experienced? For example, one communication barrier that we've heard a lot is, "My doctor said 'clinical trial' and all I heard was 'guinea pig'." Do you have others? 

This novel approach to combining patient and physician education is very exciting and we'd love to have your input. Thanks in advance for anything you have to offer! 

Sincerely,

Shelby - MRF 

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MattF's picture
Replies 5
Last reply 9/25/2013 - 3:49pm

So i go for surgery tomorrow for the two masses (stage III) in neck. 

Pet / ct was good and surgeon has a 48 hour old MRI to get all the info she can. I will check in after a few days. 

 

Thanks

Matt

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JoshF's picture
Replies 6
Last reply 9/25/2013 - 1:48am
Replies by: MattF, Janner, JoshF

Well I got the results just a bit ago. The two lesions were both melanoma...7mm & 4mm. I asked if they were nodes, he said that path didn't state that. I'm baffled as I just had CT Scan...blood work etc... which was all good. Now I need another PET/CT and surgery....what are chances of spread...I'm devastated.

Let's work for better treatments....for a cure!!!!

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JoshF's picture
Replies 6
Last reply 9/25/2013 - 1:44am
Replies by: MattF, JoshF, POW, doro, DeniseK, SABKLYN

After hearing from many of you, I stopped feeling sorry for myself. Though it consumes much of my thought, I'm trying to keep a positive attitude and push forward. So I just wanted to update everyone as to what I've done in my fight.

 

Opted to have surgery at Northwestern Memorial. All of my files had already bent sent over electroincally except path reports from surgery last week. They also wanted path slides. I went grabbed everything and drove down to Northwestern. Surgical Oncologist came out and met me and said she would schedule me in for Wednesday.

So by time I got home she called and scheduled meetings with surgeons (surgical oncologist & plastics), has PET/CT lined up, Brain MRI...all on Wednesday!!!! Not sure if I'll get results because I see surgeons first...best she could with short notice. I'm not complaining. Now just need to deal with scanxiety!!!! I just had them at end of Feb...all clear!!! Guess some things never change...only difference is that I have melanoma again so more worried about spread!! Keep saying...please be local!!!!!! Also, pathology report was not good...in terms of how it was written. No miotic rate, surgery report said thinks it's a lymph node but path says nothing, nothing about margins though surgeon assured me he got everything  and now we look for metastatic disease (i.e. scans) and do another surgery for microscopic cells. This sound normal?

Anyway, I received call from medical oncologist who wanted to bring me up to speed on pathology, next steps etc... I informed her what I did and where I'm going for surgery and she applauded me for moving fast and said I picked great place to have surgery. I asked about pathology and how written...she said probably not lymph node. Of course I asked about distant metastasis given scans 6 months ago...of course she didn't say oh everything will be great...only that given the history and recent tests she wouldn't be suprosed if they were clear but docotors/oncologists don't go on speculative...need definitive.

So that's it....pray for clear scans.....and to get on with it!! Thanks everyone for being supportive. I've heard many of you say....you're your own best advocate!!!!

Wishing you all the best!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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MaryD's picture
Replies 11
Last reply 9/25/2013 - 12:39am

This coming January, 2014, it will be 13 years since I was first diagnosed with melanoma on my upper left arms.  Five recurrrences, including progression to stage IV in 2007 via a solitary lung nodule, and five treatments later including interferon, radiation, peptide vaccines, Ipilumimab, and pulsed IL2, I am happy to say that today, I reached the milestone of being free of disease for 5 years.

There was a time I could have never imagined reaching this point but with the help of some wonderful health care professionals that have supported me along this journey including Drs Jai Balkissoon, Jeffrey Weber, and David Minor,  I am here to validate that there is hope!

But without a doubt, this MPIP family was the greatest source of support throughout the years providing invaluable information, education, and friendships that will last a lifetime.

Please know there is hope - we have more ammunition to fight melanoma than ever before and there are more and more long term survivors out there.

Mary

 

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I'm me, not a statistic. Praying to not be one for years yet.

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Private  messaging between POW and I via the profile contact route worked today.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 7
Last reply 9/24/2013 - 5:44pm
Replies by: JerryfromFauq, POW, Momrn5

Good Morning,

Yesterday, I tried the the "private message" function on the new website. I sent ouy a few "private" messages and have received NO responsed back.

Yes, maybe the MPIP members did not want to repy to my message.

HOWEVER< can anyone VERIFY the private message function is working with the new website.

Thanks for your help.

Josie

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