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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Group,

I just found this and had to share. "Survivors" by Matthew West. Share and be blessed. But be sure to sit and watch. With a hanky nearby would be advisable.

http://www.youtube.com/watch?v=iQiip2j2ZT0&feature=related

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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Rocco's picture
Replies 11
Last reply 6/10/2011 - 1:55pm

Scan results yesterday.  CT of chest/adb/pelvis and brain MRI both clean!  Scanxiety was pretty bad this time around, so greatly appreciated everyone's kind thoughts, good vibes and prayers.   Will be scanned again late August. 

Was told in order to stay on the Compassionate Use Trial protocol (10MG/KG) that I would need to stay on the 3 month scan schedule.  So in case I had reoccurance I would get the10MG instead of the 3MG dose.  Need to confirm with my Onc on this, as I saw a newbie (to me) Dr. yesterday.... need to weigh pros and cons of this approach.

Also asked to resign my trial paperwork as they added 2 more "rare" potential side effects for ipi/Yervoy - since I last resigned in March!   Reviewing now and will post what those new side effects are under separate posting in case folks are interested. 

Rocco - IV since  2005, THX2MDX / Ipi

Luke 1:37

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boot2aboot's picture
Replies 1
Last reply 6/9/2011 - 6:29am
Replies by: shellebrownies

since i had a reoccurance in the same spot 5 weeks out...i asked that the tumor be genetically tested so more effective treatment could be given...understanding what they test for and matching targeted therapy options were confusing to me...i stumbled upon this paper and, of course it's written by a drug rep, but still informative...

http://www.asco.org/ascov2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2011/zds00111000367.PDF

don't back up, don't back down

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KellieSue's picture
Replies 10
Last reply 6/11/2011 - 9:53am

Hi all!

Doing good on B-raf. Latest scans show stable disease. I'll take it! Feeling good with minimal side effects! Have been busy lately. Gone to NYC to visit my sisters, went to Vegas earlier in the year with friends. Now getting ready to enjoy the summer with the kiddo's.

Today was my 3 year anniversary of  progressing to Stage IV! It's been a busy 3 years of surgeries and reoccurances and just some shitty times but I feel very grateful to be doing so well now! I can't thank everyone enough on here! You've all really saved me from going crazy many times!

Kellie(from Iowa) Stage IV on B-raf

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Gene_S's picture
Replies 2
Last reply 6/9/2011 - 2:48pm
Replies by: EmilyandMike, KellieSue

Dominating the 2011 ASCO meeting were the plenary reports on trials with two novel therapies for metastatic malignant melanoma.

see:  http://www.oncologystat.com/news/First_Line_Market_for_Melanoma_Not_a_Lock_for_Bristol_or_Roche.html

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Terra's picture
Replies 9
Last reply 6/10/2011 - 11:22am

Hi, Derek and I are at the hospital getting his blood, ECG, etc completed for the extended use ipi trial in Toronto at PMH.  He has his first injection on Friday. 

We talked with the nurse today and she confirmed that once he starts ipi he will NOT be rescanned until he is competely finished with the 4 treatments. 

That is 3 months away, I am really concerned about this - it seems to me many of you have had scans before the trt is finished and some people have even been taken off the trial because of new mets developing during treatment.  Any comments.

 

Thank-you 

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MichaelFL's picture
Replies 5
Last reply 6/11/2011 - 7:04am

Good afternoon everyone.

I would like to point out that IL-2 and IL-21 are not the same. Interleukin-21 is a protein that in humans is encoded by the IL21 gene and is a experimental drug which is currently in clinical trials.

IL-21 was approved for clinical trials in metastatic melanoma and renal cell carcinoma patients. It was shown to be safe for administration with flu-like symptoms as side effects. Dose-limiting toxicities included low lymphocyte, neutrophil, and thrombocyte count as well as hepatotoxicity. According to the Response Evaluation Criteria in Solid Tumors (RECIST) response scale, 2 out of 47 MM patients and 4 out of 19 RCC patients showed complete and partial responses, respectively. In addition, there was an increase of peforin, granzyme B, IFN-Y, and CXCR3 mRNA in peripheral NK cells and CD8+ T-cells. This suggested that IL-21 enhances the CD8+ effector functions thus leading to anti-tumor response. IL-21 proceeded to Phase 2 clinical trials where it was administered alone or coupled with drugs as sorafinib and rituximab.

Here is the trial:

http://clinicaltrials.gov/ct2/show/NCT01152788?term=il-21+melanoma&recr=Open&rank=1

There is also a phase II trial, but it is not recruiting patients at this time.

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Joan C's picture
Replies 18
Last reply 6/10/2011 - 10:13pm

This has probably been posted before, but I just saw it.  A very very good video warning teens of melanoma, check it out:

 

http://www.thatvideosite.com/video/dear_16yearold_me

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Lisa13's picture
Replies 18
Last reply 6/9/2011 - 1:10pm

Well, the results today wern't good news - the nodules in my lungs are melanoma. That being said, my onc. was very optimistic and never for a moment made me feel like I was doomed. I have low bulk disease in my lungs which is growing slowly. I'm going to go into the IL-21 trial versus decarbazine as this is my first line of treatment. Of course if this doesn't work, we are going straight into ipi.  I was so happy he didn't make me feel like I had months to live as he said that stats were old and that there were so many new drugs for melanoma that were prolonging people's lives.  I have no choice other to be positive and focused and pray that one of these treatments will get rid of these nodules.

I would love to hear of other people's stories who've had numerous lung nodules. I must believe that these can shrink and disappear and I know it's been possible for many people.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Sherron's picture
Replies 12
Last reply 6/10/2011 - 1:26pm

My computer is down at home, so cannot get into facebook....Just worrying about Eric & Jill.

Take Care,

Sherron, wife to Jim FOREVER

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Hi All,

Interesting reading in TIME magazine.  Dr Oz on cover talking about his scare with colon cancer and how he was a "lousy patient" - not following instructions pre-test, cancel/resched follow up tests, anxiety over results, telling family and friends...Although it was not mel, still touched on what we go through and put a sense of "normalcy" to us as patients with our fears.

Also in this issue was a brief commentary on one man's journey through "Scanxiety".  Pretty cool how he describes his experience.

 It is available online.  www.time.com

Have a great day!

Laurie

Do not fear tomorrow, God is already there.

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Rendergirl's picture
Replies 17
Last reply 6/12/2011 - 9:31am

When I was first diagnosed a few months ago, my mom and sister didn't want me coming onto this site because they thought I was just scaring myself with other people's horror stories. I fought them on it and continued coming because I can't fight unless I have info, and I got info and more from all of you. I wouldn't have gotten through my past three surgeries withoutt the people here. BUT.... a little part of what they were afraid of was true. Most days are good since I am NED now after my 3rd surgery, but I do have a tumor behind my knee and I have my 4th surgery on that in a few weeks and the chance it might be cancer is scaring me. But like I said, most days are fine. Then there are those days that I read about person after person who's journals I follow are in ICU or in the hospital and not doing good. And someone else posts a tribute video on YouTube... it just hits me like a hammber blow.

How do you keep from freaking out when it seems all the fighting and the tears and the pain is for nothing? When you feel like no matter what happens, this might really kill you? How do you stop from scaring yourself? How do you stop your heart from breaking over everyone else's battles?

Just having a bad day I guess. Honestly, I know I should be so happy, I'm NED. There are so many that are SO worse off. Maybe I'm just too empathic... It just doesn't seem fair. I hate melanoma. No one deserves this.

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ShariC's picture
Replies 17
Last reply 6/8/2011 - 6:06pm

Sorry I've been out.  Remember I had the distended stomach....its Mel.  All over.  "too numerous to count".  Doctor Gonzoles at UCCC said he needed to get the tumor growth under control before Yervoy so he had me do a round of DTIC and Vinplastine and Cistabline.  Did that over the weekend.  Its been a real strange trip.  Honestly at more peace than I thought I would be.  I'm preparing for the worse, my doc is trying everything he can to extend.  He said he's seen worse?!  I don't see how. 

Sorry for such a post...but, I wanted to let you know.  I'll try to update occassionally...hopefully the chemo beats it back a bit and I can get some comfort.  But, it manifested quickly...very quickly...my body just couldn't handle the tumor load its probably had for months..and it just reached a threshold.  Strange.  Strange indeed.  - Love you all - Shari

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/8/2011 - 11:53am
Replies by: Anonymous, Carol Taylor

Hi Carol,

 

I visit MPIP daily and read your posts. I so appreciate your prayers. You give everyone comfort.  I rarely post but I feel compelled to ask for your prayers.

I am having surgery on Thursday & very scared. This is my 3rd surgery in 3 years. I pray that God will guide my surgeons hand & there will be no complications, as well as, obtaining clear margins.

Carol, any prayer you can say for me will be sincerely appreciated.

Thank you for praying for all of us.

Tiffany

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