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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Replies by: EricNJill, Anonymous, premedy

This weekend Eric had a new tumor pop up in his groin.  The other tumors that were in/on his leg are nearly gone so I am very confused by this.  He also had increased tumors in and around the heart in his scan on 03/18/11.  We weren't worrying too much about them because of the progress in his leg but now with this new tumor that is almost the size of a lemon I am shocked.  Has anyone hear of this on BRAF/MEK?

[URL=http://www.mediafire.com/imageview.php?quickkey=r1f2584j0td1d0b&thumb=5][IMG]http://www.mediafire.com/imgbnc.php/b6d73b5f3bf97007c89ad36df88bee797c5715aaede9a84a6866f02e2b7076592g.jpg[/IMG][/URL]

Picture of the new growth.

JillNEric in OH

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Well its been over a year since I last posted on here, so I wanted to touch base and meet the new folks and look for my old survivor friends and caretakers that I grew to love and hug :)

Update on myself, June will be my 5 years NED/Cancer free milestone from a stage IV diagnosis.

For those of you that dont know me yet, my melanoma was in both lungs, my liver, a tumor wrapped around my espohogus, all the lymph nodes in my chest were filled with melanoma and I had 2 hot spots on 2 bones that had exterior beginnings of melanoma penetration.....

I was given 6-9 months to live................ underwent High Dose IL-2 (interleukin-2) managed to get 56 bags in....and I was as blessed as can be, a complete responder after 9 months of in and out of ICU doing the IL-2.

I hope my story will offer those of you newly diagnosed the wonderful word HOPE.... and to all my survivor friends and caretakers a huge hug and hello and hoping as always life is holding all the good days one can muster after being dealt this life altering disease and experience.

I plan to try and sign on from time to time, to keep some spirits high and to offer a shoulder or high five when the celebrations come along!

Hugs to you all~

JanefromMaine.

(used to be) JanefromMaineinNC ;)

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love4life's picture
Replies 12
Last reply 4/10/2011 - 10:28pm

Hello All,

I've been browsing the message boards here for around a year and have finally gotten up the courage to say hi.  I have been diagnosed with Stage IV MM with metastasis to the brain and lung.  I am currently NED and am finishing up my year of Interferon in the next 6 weeks.  I am curious if anyone out there has had brain mets and what type of treatment you were offered?  I am very hopeful that the Interferon works and that I will remain NED for many years to come but am wondering what other treatments are available for someone like me.  I am a young mom and am willing to try anything to keep this monster from popping up again. 

 

Thanks!

Natalie

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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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KevinM's picture
Replies 14
Last reply 4/5/2011 - 11:23am

I can't believe that it has been 5 years since the surgery to remove the axillary lymph node that turned out to be melanoma. I have an unknown primary and after a full lymph node dissection, the one lymph node (2/3rds of a golf ball size) was the only one found positive for melanoma. I did 3 rounds of bio-chem in a clinical trial which was very challenging.......but I am still glad I chose this route.

To help celebrate my 5th anniversary, I am running The Boston Marathon for the 11th time and second with the "Running for Cover" Melanoma Foundation of NE marathon team. This will be my 19th marathon and 7th since my diagnosis. Running has certainly helped me get through the past 5 years and it has also provided an avenue to promote melanoma prevention and early detection. I feel great that my message has changed the mindset of many friends, family and colleagues.

This  year I am running in honor of my healthcare team at Beth Israel...but please know I always run with those of you engaged in the battle with melanoma in my heart.

My best to you all!!

Kevin

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Leigh's picture
Replies 43
Last reply 4/19/2011 - 9:28am

Hi all,

I would really appreciate any help/experience as I am in a complete panic.  I have been sent CT results to my home address without my surgeon being notified and he does not want to discuss them with me over the phone over the weekend without seeing them himself.  I can see his point but I feel sick to my stomach and need to find information quickly.

My background is that I was diagnosed early December with a 0.83mm, non ulcerated, no mitoses, Clarkes IV melanoma, no lymphvasc invasion, on my foot, WLE performed and SLNB was negative.  About 2 weeks after the operation I started feeling discomfort in my leg which seemed consistent with lymphatic obstruction, achy feeling with upper groin discomfort.  My leg was 3cm larger than the other and I did have an infection in the wound site so that was that.

The upper groin ache has continued though with no enlargement on measurements and ache went to deeper in my pelvis on that side (not terrible just obvious discomfort).  The surgeon felt this was related to surgery and didn't advise tests.

I sought a second opinion about the tests and we went ahead with a CT on Friday.  I have just got the results in the mail today (Sunday) as hadn't checked the letter box.  I am in a panic about what these mean - my GP says it could just be a red herring but I am not sure as it is the lymph nodes that are changed.

Please if anybody has had this happen to them and it has all turned out fine write back!  The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"  The nodes are 11m, 10mm and otherwise less than 10mm.  (Incidentally they found "most likely a haemangioma" in my liver).   Could this be a red herring, could it be nothing.  It seems unbelievable as the sentinel lymph node was negative and the surgeon was very confident that he got the correct one.

I have an almost 3 year old and 6 month old baby and I cant bear to think about what this might mean for our family.

 

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Hello, If you are wondering why there seems to be so little money spent on melanoma research see the article "Hitting Hard to Treat Cancers" at 
 
The article starts on page 20. Possibly the best answer why melanoma research money is so low can be found in the last paragraph on page 21. Also in this article is about targeting cancer cells for melanoma, very interesting.
 
Best wishes,
Gene 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I am a melanoma survivor.  Yesterday I met with the folks at MRF and they encouraged me to share a resource I created with all of you!  I hope it brings you all as much support and inspiration as it has to me and many others! www.treatmentdiaries.com

 

TreatmentDiaries.com is a unique online resource, providing REAL information exchange between people coping with or caring for anyone with a chronic illness or rare disease. This virtual support group is free and always available; offering a safe place to anonymously keep multiple diaries of your daily journey, across more than one condition - either privately or shared out with others, allowing for shared coping strategies, support for others and the exchange of information.

TreatmentDiaries.com is dedicated to the needs of ALL types of users including; individual patients, caregivers, family members and advocates. We promote the importance of keeping a diary of life changing experiences and the significance of engaging in behaviors and activities which promote health, mental wellness and the self-management of chronic conditions.

TreatmentDiaries.com was inspired by REAL stories of people struggling with chronic conditions and in desperate need of support. Our goal is to connect those facing similar circumstances and facilitate the sharing of valuable information and support at every stage of an illness through wellness! Finding and sharing genuine information and experiences is a powerful thing. Our goal is to give you the tool to do just that.  

Connect...Share and Inspire!

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Tim--MRF's picture
Replies 15
Last reply 4/11/2011 - 9:23pm

I will be seeing some of the people from BMS (makers of Yervoy/ipi) next week and wonder if you have any questions you would like me to address to them.  If so, just post a reply and I will collate them and see what I can find out.  I can then post all the answers here when I get back.

I have already talked to people who have questions about price, questions about dose levels, and questions about availability, etc.  I can't promise to get every possible answer but should be able to get some key clarifications.  I would need these posted by mid-afternoon Monday.

We are working on organizing a webinar on ipi and other developing drugs, hopefully for sometime in May.  We will probably co-host it with the Melanoma International Foundation--Catherine and I are in agreement about what we have in mind and we will likely work out the details in the next few days.

Tim--MRF

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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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Thank you all for your kind words of wisdom and responses to my previous post about Interferon.  It is comforting the hear that many of you struggled with this same tough decision and were able to come to peace with your treatment choice.  I will pray that Jeffrey is able to do the same.  Thank you, Carol, for the link to your blog.  Your message was so beautiful -  we are determined too.

Thanks,

Jeff's MOM

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Hi Jim,

Jonathan from MIF recommended that I get your opinion regarding a Phase 1 MDX1105 (anti-pdl1) trial. He told me that you wanted to get into a trial of anti-PDL that your doctor at MDAnderson, a Dr. Hwu, is extremely enthusiastic about.

http://clinicaltrials.gov/ct2/show/NCT00729664
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2008-0756

Would appreciate any input you can share with me, particularly, Dr.Hwu's opinion regarding this trial & MDX1105

Is anti-PDL1 as effective as PD1. Has any results been published on effectiveness of this drug?

Thanks so much for your help.

Douglas

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/5/2011 - 8:21am
Replies by: Terra, Anonymous, jim Breitfeller, killmel

Hi Everyone,

Would appreciate your help. I live on the west coast and all the pd-1 trials are on the east coast so I am considering this trial- Unfortunately not able to travel to east coast.

So we are considering this is an open label, multicenter, dose escalation and multidose study of MDX-11-5, a fully human monoclonal IgG4 antibody targeting the Programed Death-Ligand 1 (PD-L1).

http://clinicaltrials.gov/ct2/show/NCT00729664

I know that there has been  success with MDX 1106 PD-1.Wondering if this drug is similiar?? Anyone have any feedback on drug MDX1105-01=Anti-PDL1 or this trial.

Thanks so much.

Douglas

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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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