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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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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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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First, Darcy is doing fine.  Hopefully she won't mind be posting a status update.  She speaks often to school children on Sun Safety.  She's actually speaking today - hence me thinking about MPIP.

She was originally dx with stage IIIc in 2004, did a year of INF, and 7 years later - is happily NED.

My thoughts and prayers never are far from those struggling and those who got their wings. 

 

All my best,

Duke (West Hartford CT)

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Replies by: DukefromMA, jag, Charlie S

First, Darcy is doing fine.  Hopefully she won't mind be posting a status update.  She speaks often to school children on Sun Safety.  She's actually speaking today - hence me thinking about MPIP.

She was originally dx with stage IIIc in 2004, did a year of INF, and 7 years later - is happily NED.

My thoughts and prayers never are far from those struggling and those who got their wings. 

 

All my best,

Duke (West Hartford CT)

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kim2712's picture
Replies 20
Last reply 6/7/2011 - 2:17am

I am very sad to say that my son Erik laid aside his battle with this insideous disease on May 22nd. There are no words to express the pain we are all feeling right now. He was truly an amazing young man right up until his last breath. Never had even a slight moment of self pity, anger or complaints. He spoke with each of his brothers, myself and his dad and said some beautiful things to us. He had his uncle organize a meal for all of the family from Outback, a tradition we have for birthdays, graduations, etc..and we all ate together in his hospital room.

He will be missed. I love you Erik..

Kim

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Gene_S's picture
Replies 16
Last reply 6/7/2011 - 2:34am

Most melanoma information sources cite sun exposure as “the cause” of melanoma. In fact, the American Cancer Society states: “We do not yet know exactly what causes melanoma skin cancer.” The ACS notes that prolonged excessive sun exposure is just one of the potential risk factors for the disease.

Other risk factors:

  • Having many large or irregularly shaped moles
  • A family history of melanoma
  • Fair skin
  • Weakened immune system
  • Over the age of 50
  • Smoking

Is there something else you want to add to the possible causes of melanoma?

Best wishes,

Gene

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

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Charlie S's picture
Replies 21
Last reply 6/3/2011 - 11:03pm

Over the past few months, several marketing companies have recruited people via the bulletin board to participate in paid marketing research.

Three questions.

Did you respond to the post, did you participate and did you get paid?

I am somewhat concerned about patient exploitation occuring here that benefits commercial enterprise.

No, I do not work for the MRF, but I do suspect pharma creeping in here and I do not like it, and it needs to be rooted out on any  patient forum before it takes seed.

Charlie S

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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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nicoli's picture
Replies 1
Last reply 5/31/2011 - 9:11pm
Replies by: nicoli

Could this be as great as it seems? Dated June, 2011, but it's not even June yet, so I don't understand. (Not an advertisement.) Sorry bout the font, can't seem to fix it.Complete regression of subcutaneous and cutaneous metastatic melanoma with high-dose intralesional interleukin 2 in combination with topical imiquimod and retinoid cream.

Source

aDepartments of Dermatology bSurgery, Division of Surgical Oncology, University of California Davis, School of Medicine cDepartment of Veteran Affairs Northern California Health Care System, Sacramento, California, USA.

Abstract

There are limited treatment options for metastatic melanoma, which is almost universally fatal. We report the successful treatment of 64 of 64 cutaneous and subcutaneous melanoma metastases in three patients using high-dose (22 million units per 1.2 ml) intralesional interleukin 2 (IL-2) in combination with topical imiquimod and a retinoid cream. Before intralesional therapy, all patients had been treated surgically and were no longer considered surgical candidates. Rebiopsy of 15 of the treatment sites and long-term follow-up (10, 12, and 27 months) showed regression of all treated tumors. Six months after discontinuation of therapy, one patient developed multiple new cutaneous metastases, but these were also responsive to treatment with intralesional therapy. The other two patients did not experience recurrence of their cutaneous melanoma. However, one of the two patients developed lymph node and brain metastases 18 months after initiation of intralesional therapy, but is still alive, now at 27 months. The concentration of IL-2 used for the intralesional therapy was much higher than in previously reported cases, which may explain the excellent responses that were observed. These results support intralesional high-dose IL-2 as a very effective therapy for controlling cutaneous metastatic melanoma. Additional studies are needed to determine whether this therapy is associated with a survival benefit. 

 

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

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sheri47's picture
Replies 7
Last reply 6/1/2011 - 2:45am
Replies by: JerryfromFauq, lhaley, nicoli, Anonymous, sheri47, ValinMtl, washoegal

ok my mom  a stage 4 since 2001, first was in 1982 left heel. with recurrances 2005 2009 and now 2011.

 2001 was in her belly encased in a lympnode, well now 3 soft tuessue mass same foot but up near ankle more now,

 seen orto, onco dr today and he said he could amputate but no  guranty that it will not come back, she is 75 and not in the greatest of health, so she was happy with the decision not to amputate but  they r just going to let it go and when they get bigger and causing pain try rads for pain relief,  but she has said she want quality of life at this point,

 i hate this cancer crap

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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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Bill G's picture
Replies 3
Last reply 5/31/2011 - 9:25pm

Durable Complete Responses in Heavily Pretreated Patients with Metastatic Melanoma Using T Cell Transfer ImmunotherapyClin Cancer Res. 2011 Apr 15;[Epub Ahead of Print], SA Rosenberg, JC Yang, RM Sherry, US Kammula, MS Hughes, GQ Phan, DE Citrin, NP Restifo, PF Robbins, JR Wunderlich, KE Morton, CM Laurencot, SM Steinberg, DE White, ME Dudley 

Currently available and experimental therapies for metastatic melanoma produce very few durable complete responses and, thus, a low chance of cure. Rosenberg et al from the National Cancer Institute report results of a new approach for these patients: the adoptive transfer of autologous tumor-infiltrating lymphocytes (TILs) selected for antitumor activity and expanded in vitro. The study involved 93 patients with metastatic melanoma who were heavily pretreated with standard and experimental regimens.... 

http://www.oncologystat.com/journals/journal_scans/Durable_Complete_Responses_in_Heavily_Pretreated_Patients_with_Metastatic_Melanoma_Using_T_Cell_Transfer_Immunotherapy.html 

 

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Durable Complete Responses in Heavily Pretreated Patients with Metastatic Melanoma Using T Cell Transfer ImmunotherapyClin Cancer Res. 2011 Apr 15;[Epub Ahead of Print], SA Rosenberg, JC Yang, RM Sherry, US Kammula, MS Hughes, GQ Phan, DE Citrin, NP Restifo, PF Robbins, JR Wunderlich, KE Morton, CM Laurencot, SM Steinberg, DE White, ME Dudley 

Currently available and experimental therapies for metastatic melanoma produce very few durable complete responses and, thus, a low chance of cure. Rosenberg et al from the National Cancer Institute report results of a new approach for these patients: the adoptive transfer of autologous tumor-infiltrating lymphocytes (TILs) selected for antitumor activity and expanded in vitro. The study involved 93 patients with metastatic melanoma who were heavily pretreated with standard and experimental regimens.... 

http://www.oncologystat.com/journals/journal_scans/Durable_Complete_Responses_in_Heavily_Pretreated_Patients_with_Metastatic_Melanoma_Using_T_Cell_Transfer_Immunotherapy.html 

 

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washoegal's picture
Replies 8
Last reply 5/31/2011 - 9:19pm

I am one of the "lucky" ones  with the BRAF mutation or so says my ONC.  Anyway my question for some of the more well studied in this group, if you have a gene mutation does that mean it effects you no matter you status (ie NED).  Specifically, is that Gene mutated within your body not just a Melanoma  Tumor?  What got me wondering was when my Onc suggested I have my regular cancer screenings Breast, Colon, etc more frequently.  Then I started reading the BRAF shows in Colon, non small lung, etc.  What I know about genes I can fill on about two lines.

Thanks,

Mary

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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ShariC's picture
Replies 16
Last reply 6/5/2011 - 4:34pm

Hi All - I'm afraid I have a type of post that is fairly common and I'm just needing to sound off and express my anxiety to a group of people that can understand and empathize.  I'm Stage IIIc.  Finished biochem last February.  Over the past 10 days my stomach has become increasingly bloated and uncomfortable.  I changed the way I ate, rested differently, exercised, rested, etc...  Anything to alleviate the issue.  Its getting worse.  I would now characterize my abdomen as distended and its increasingly uncomfortable.  I called my oncologist and his nurse recommended I expedite my PET scan.  It is tomorrow AM.  I hope to have results by tomorrow afternoon.

I'm a wreck.  I KNOW many, many of you have been through this...and it doesn't matter how much you prepare ... its NEVER a good day to find out your cancer is back. 

MM is so random and variable.  Some people get years ... some months.  At any given time I try to tell myself to be happy with whatever time I do get. 

Maybe its not back, maybe this is an over-reaction? 

Thanks for listening.  - Shari

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