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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boot2aboot's picture
Replies 0

More mel was found under my armpit...seems to remain local...found out this new info while in hospital for port placement ...new consences urges more surgry with radiation and biochemo after....or something stronger if it has spread....won,t rescan until surgery and rad is done....last pet was may 17...
Boots

don't back up, don't back down

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carol b's picture
Replies 16
Last reply 6/3/2011 - 10:26am

First Thank all of you for you words of encouragement and all your prayers. Im going back in the morning to see how many bags of IL2 i can take.. Please say a prayer for me as i know you all will.As My friends and melanoma family i

will take you with me to the hospital in my heart. I will talk to you in a week or so..Prayers for all of you. Patients and caregivers.

Carol Bellinger

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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EmilyandMike's picture
Replies 3
Last reply 6/2/2011 - 11:11pm

A few years ago, I never thought I would follow an oncology conference with excitement. But here I am and I am sure you have seen a lot of news on melanoma due to the upcoming ASCO conference this weekend since melanoma drugs are a top focus at the conference. The results of the Ipi trials are what I am waiting to hear about, but here is a good overview of the "Drugs to Watch at ASCO".    The last paragraph seems interesting - regarding the drug P28 for solid tumors:   http://seekingalpha.com/article/272953-drugs-to-watch-at-asco-2011

AND 

This press release came out today announcing a Roche/BMS combo trial for the BRAF inhibitor and Ipi.  Good news!

http://www.fiercebiotech.com/press-releases/roche-enters-collaboration-b...

Our experience with melanoma: http://emandmichael.wordpress.com/

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Rocco's picture
Replies 16
Last reply 6/2/2011 - 3:52pm

You'd think I wouldn't, but I still do - get nervous that is prior to scans.  This Saturday bright and early I'll be warming up the CT and MRI scanners at DFCI.  Would welcome any and all good vibes, prayers and kind thoughts you'd care to send my way!  My husband who is a kidney cancer survivor just received an 'all clear' from his scans 2 weeks ago...so I  hope to follow suit.

-Rocco, Stage IV sinc 2005

Luke 1:37

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Carol Taylor's picture
Replies 1
Last reply 6/2/2011 - 3:01pm
Replies by: EmilyandMike

Yesterday I found a site that updates medical news from around the world at least daily. Though they cover lots & lots of diseases, conditions, palliative care, insurance, trials, etc... this is the link to their melanoma news, which includes new trials & meds.

http://www.medicalnewstoday.com/sections/melanoma/

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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Shelby - MRF's picture
Replies 2
Last reply 6/2/2011 - 2:23pm
Replies by: Shelby - MRF, nicoli

On Monday, June 13, 2011 from 2-3pm EDT, Dr. Lynn Schuchter will provide callers with an update from the American Society of Clinical Oncologists (ASCO) Annual Meeting in Chicago.  The meeting will take place from June 3-7, 2011 and will include presentations on the latest information regarding research, treatment, diagnosis and prevention of melanoma.  Please join us for this free teleconference aimed at providing patients and their loved ones with the most up-to-date news in melanoma.  Registration is required.  

Register Here! 

Dial-In Information:

Toll-Free Dial-in #: (877) 395-3025

Please dial in approximately 3-5 minutes early.  You will be asked to record your first and last name, as well as your email address.  You will then be placed in the call.  Please make sure you record this information so we can track the number of participants we have on the line.  A survey will be emailed to you after the call so we can gather your feedback. 

Additional Information:

  • Date of Call: 06/13/2011
  • Time of Call: 14:00 Eastern Time
  • Expected Duration: 60 minutes
  • Topic: June 2011 ASCO Update

About the Speaker:

Dr. Lynn Schuchter is the University of Pennsylvania's C. Willard Robinson Professor of Hematology/Oncology, Chief of the Hematology/Oncology Division and Program Leader for Penn's Abramson Cancer Center's national Cancer Institute approved and funded Melanoma Research Program.  She is a member of the board and the Scientific Advisory Committee for the Melanoma Research Foundation.  

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nicoli's picture
Replies 3
Last reply 6/2/2011 - 2:08pm
Replies by: gabsound, KellieSue, Jamietk

I just saw a trailer for a new movie coming out called 50/50. It's a comedy about cancer.

How does anybody feel about this? I must admit, the trailer made me laugh. And laughter is good.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Hi, the hits just keep coming. Had 2 recent biopsies. One was just fibrosis. The second was melanoma in situ. Waiting for a wider excision. My sister called yesterday to say her breast bx was positive for cancer. Praying it's early, but already not thrilled w what she read me from path report. Now today found lump at bottom of LND scar. This seems near to area where PET scan had concerns, but was only 3 weeks post op (now 3 months out). Have to wait until next tues to see oncological surgeon. Phoned oncologist they are moving up my pet scan. Hoping it's not mel again so soon. More worried about sister than me. This sucks!

Just venting,
Julie in Las Vegas

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Lauri England's picture
Replies 10
Last reply 6/2/2011 - 9:28am

I had my appointment with the surgeon today and the lymph node that was removed last Friday was benign.  What a releif that was.  Still on Interferon. In my 8th month and NED so far.

Don't sweat the small stuff. There are bigger fish to fry!

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/2/2011 - 8:09am
Replies by: Doug-Pepper, Gene_S, Anonymous, MichaelFL

Hi,

Many people have posted that they take Coenzyme Q10 .

Based on the articles below there is a difference in CoQ10 products. The best one should have "Ubiquinol" on the label not "Ubiquinone".

I have not been able to find Coenzyme Q10 "Ubiquinol"on the label. Common popular brands (Nature Made, CVS, Finest Natural, nature Bounty) just identify Coenzyme Q10 as the active ingredient.

This supplement is expensive so I want to purchase the  Coenzyme Q10 with "Ubiquinol". I would appreciate any recommendations for a brand/manufacturer of Coenzyme Q10 that you are taking.

Thanks,

Jamie

http://naturalstandard.com/news/news200602007.asp

"In 2006, the ubiquinol form of CoQ10 was first introduced as a dietary supplement. Ubiquinol is an electron donor that is able to neutralize dangerous free radicals as soon as it is ingested—unlike ubiquinone (the only type of CoQ10 available before 2006), it requires no biochemical activation after it is consumed.

Evidence suggests that the body absorbs ubiquinol up to eight times more effectively than ubiquinone.38-40 These findings suggest that ubiquinol may offer the most bioavailable CoQ10 formulation available today."

 

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Hereiam's picture
Replies 1
Last reply 6/2/2011 - 4:59am
Replies by: James from Sydney

Virotherapy seems to be developing in melanoma treatment. Somewhere it' s already used officially. Do you know something more?

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lhaley's picture
Replies 13
Last reply 6/1/2011 - 10:31pm

Since my PET that showed a spot on my arm and then follow up, it has been detected that I have another spot on my arm. Specifically by the ulnar nerve - the funny bone, just not so funny. Surgery will be Friday, we go to Charlotte Thursday for Pre-op tests and will be home Friday night.  There is not concensus if it is a node or a soft tissue tumor. It depends on the final pathology if they will follow up with radiation or not and if  able to be isolated from the nerve. 

Remaining positive. Keep reminding myself that the lungs remain stable and the report even thought that the nodules had shrunk. I'll belive it's lung junk if the next scan or so remains the same.  I've always believed in surgery, at least in my case so I'm glad that once more they are cherry picking. 

I might look like swiss cheese but looking forward to be able to post NED!

Linda

Stage IV since 06  -breast, bladder (twice), node behind clavicle, node in arm, and now by the ulnar nerve

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Hi - sorry this question is so silly.

My history- mm in-situ, family history, over 100 moles, 50+ removed (some mild, some moderate, some severe and some benign)

Had a bunch off recently and one was benign w/ a peripheral margin involved.

Derm underlined that part and wrote "observe"... I'm not one for observing, but I assume in this case, re-excising a benign mole would be extreme overkill?

I'm annoyed because it was totally excised (or so I thought) by a derm who specializes in surgery....

Wasn't sure if I should call dr to just check.

Thanks- best wishes to you all!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/1/2011 - 9:04pm
Replies by: Vermont_Donna

Hello everyone!  I am stage 4, began IPI on May 2nd and had my 2nd on May 24th.  I have been finding bruises with lumps under them, first started showing up after my first infusion and then found more after my 2nd infusion, my doctor told me it is too early to start seeing reactions to the IPI, but I believe that is what I am seeing....I find it hard to believe that just out of the blue these start pooping up....I have read other topics etc.  What have the rest of you experienced, have you experienced this also and how soon did you find these appearing if so.....

When I called at first the PA told me this is common and they will go away...so is this the melanoma being found by my immune system and surrounding it, preparing to destroy?  I would sure like to hear from the rest of you on IPI.  I'm not freaking out, but would be more reassured if others have had this happen also. 

Thanks for you time.........go IPI go!!

Get a skin check at least once a year by a dermatologist and stay out of the sun.

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I've created a community facebook page called "Melanoma Warriors-University of Colorado Cancer Center", in hopes of creating a support network among UCCC patients.  And maybe we could also collaborate on a fundraising project for "our" cancer center or a larger cause like MRF?  http://www.facebook.com/#!/pages/Melanoma-Warriors-University-of-Colorado-Cancer-Center/215693965130780

Rich

www.hotelmelanoma.blogspot.com

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