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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Pass this onto anyone who is interested: http://www.safefromthesun.org/about/innovative_research.html 

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Jamietk's picture
Replies 1
Last reply 6/10/2011 - 1:30am
Replies by: FormerCaregiver

Anyone have experience with abdominal fluid, both in regards to melanoma and not in regards to melanoma? Yesterday I had a fever of 102.4. I ached all day, but mostly abdominal pain. By the time I went to bed, I was in more pain than I had ever been in my life. I went to the ER and morphine didn't help much. They did a CT and it revealed pelvic fluid but no masses. They checked for pelvic infection and bladder infection, both were normal. All other standard bloodwork they did was normal. So they sent me home with some pain meds and said to follow-up with my Dr. I know it all sounds gynecological in nature, and I did have a fever with it. But knowing my bloodwork was fine and the infections they tested for were negative, my mind starts to wander. I have a call into my Gyn and I have an email into my PA at MDA. I guess I'm wondering if anyone's melanoma first progressed in the form of having fluid on the pelvis?

Thanks

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Please go back 3 pages and read the lovely words from Sharyn's son Ricky...she would be so proud of him taking the time to thank mpip.   Val xx

Live Laugh Love Nothing is worth more than this day!

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KatyWI's picture
Replies 1
Last reply 6/9/2011 - 9:29pm
Replies by: bcl

There is an excellent article on indoor tanning on msnbc.com today.  I think it is sourced from Self magazine.  It addresses a scary issue - some doctors are recommending patients tan for various health benefits, which the article explains are unfounded.  It is definitely an "unbalanced" article - delightfully so - becuase it breaks down the arguments of the tanning industry and lays out the fallacies.  A few choice quotes:

"Indoor tanning doesn't have health benefits. It causes skin cancer!"

"Sending a patient to a tanning salon for vitamin D is the definition of insanity," Dr. Brod says.

Check it out:  http://www.msnbc.msn.com/id/43302984/ns/health-skin_and_beauty/

 

KatyWI

Just keep going!

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dian in spokane's picture
Replies 26
Last reply 6/11/2011 - 6:41am

Nothing makes me angrier than when I hear someone say that their doctors told them they have just a few months to live. Even if things are grim, there's no predicting death! Over the years here, I've seen so many miracles happen that it almost makes me believe in God.

But when asked for advice from the newly diagnosed....it's the same advice I want to give. Get your shit together.

Sometimes, I scare people off, saying things so bluntly. We all only have ONE day to live. today. this one, all of us, not just cancer patients, and all of us should be ready for death...as ready as we can be.

It's a hard place to find oneself, because as patients, and as caregivers, we want to have the MOST positive attitude ever. And it's hard to keep that great attitude while actively planning for your death. People think that they need to banish any thought of death in order to ...I don't know...send ONLY the positive into the universe. Like if they even THINK that death might be imminent, that will influence the cosmos and send death streaking toward them. But.. it's not magic. A positive attitude will help you, in all regards, but if you take an hour off to see a lawyer and write your will, it's not going to break the magic-positive-web you have built. And..if you do it, then you can stop thinking about it! And no matter how positive you are..you ARE thinking about it sometimes. Maybe it's even keeping you awake at night. 

Realistically, we all should have done this way before we got this crappy diagnosis. Hardly anyone thinks of writing a will when they are 25 and can't imagine death. BUT..we should. it's just a damn legal thing, and we should have it done.

So..if you are a patient, do your spouse a favor, and just bite the damn bullet and plan your death! No matter how it might seem like it, it is NOT like you are accepting that death is around the corner, it's just doing what's right. Because guess what, every time you go under general anesthetic you could die. any of us. Not to mention the more serious risks involved in almost every treatment out there.So..even if you are 19 yrs old, if you are a patient, put your affairs in order. Let people know what you want to have happen after you die. Or at the very least....make a will. Don't let superstition stop you. And don't make your spouse have to bring it up. And for God's sake, don't leave them fumbling, after your death, soaked in grief, trying to figure you out how to get into your bank account.

And..while you are at it, make sure that spouse of yours makes a will too. Because here's something else you might not think of. YOU might not be the one to die first! Remember that 'we only have one day' that goes for your healthy spouse too. And the last thing you need as a patient is to be in the middle of some ghastly months long treatment and suddenly need to plan the funeral of your wife.

Making these plans is not an admission of defeat. Making these plans will NOT hurry death along. Making these plans will just make things easier for you in the long run, and give you the chance to face all of the challenges you have without having this worry in the back of your mind about what will happen if the worst does come true.

Sometimes I also talk to caregivers, instead of patients. Sometimes that's a wife, who's spent most of her adult life raising toddlers and who suddenly finds herself with a critically ill husband, an uncertain future, and a world of fear.

Slap me, but here's what I want to tell them: Get a job.

True, it's hard to hold down a job when you already have 3 kids to raise and now a sick husband that needs your help. But if things go bad, that husband is going to be in recovery from some treatment and/or surgery. Even if he's lucky enough to pull through and recover and do GREAT and you have a long and happy life, there's going to be a time when he's not able to earn money.So on top of all the fear, pain and horror of melanoma, you are going to have short income. Worst case, you'll lose your insurance and things will go from bad to wretched.

So if it's possible, get a job. or go back to school. Find a way to think, in your mind, what you will do if you are suddenly a single parent. plan for your future. take charge.

I also talk to a lot of caregivers who are the primary earner....so I'm not suggesting that getting a job will solve everything, or even anything. You caregivers with full time jobs know how hard it is. You still have to find time to be with your spouse, organize care, deal with doctors...hell..sometimes QUITTING your job is what you want to do.

I'm in that camp that feels like it is harder to be a caregiver than a patient, so you all have my deepest empathy. Some of you are out there spending ALL of your time thinking of your spouse. But you have to think of yourself too, and what the future holds for you. So spend a little time doing that.

Visualize growing old and happy together. But spend a little time planning out the alternatives too.

dian in spokane

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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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