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.

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Location is just west of the beltway  a couple of blocks off  Rt 50.

 

From: "Marsha Komandt" <Marsha.Komandt@inova.org>
Sent: Thursday, May 9, 2013 7:35:19 PM
Subject: Upcoming Melanoma session May 30

For this month’s Quaarterly Melanoma Group session INOVA has three returning  guest speakers joining us for Melanoma Awareness Month.

Attached is the flyer for the Thursday, May 30 date from 6:30 – 8:00 pm.  For planning purposes of room assignment and refreshments, please do register on our website by the day before, Wednesday, the 29th.  Many thanks.

 

For those of you that may have a metastatic skin cancer or melanoma, there are two webinars sponsored by CancerCare in NYC, one tomorrow May 10 from 1:30 to 2:30 for metastatic skin cancer; the other Friday, June 14 for metastatic melanoma.  You may register by calling them at 1-800-813-HOPE (4673) or online at www.cancercare.org/connect.

You can also listen to previous workshops on their CancerCare website by logging on to www.cancercare.org/podcasts.  So if you miss one of the above, you can go into it at a later date.

 

Do hope to see many of you the end of this month.

Marsha J Komandt, RN, BSN, OCN

Oncology Education Coordinator

Life with Cancer, IHS

8411 Pennell St.

Fairfax, VA 22031

703-698-2530

703-846-0924 (Fax)

marsha.komandt@inova.org

I'm me, not a statistic. Praying to not be one for years yet.

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Gene_S's picture
Replies 5
Last reply 5/10/2013 - 8:37am
Replies by: Anonymous, Hstevens0072, Gene_S, benp

  On the next NaturalNews Talk Hour show this Sunday, you'll hear

Charlotte Gerson talk about how to eliminate cancer - naturally.
 
At 91 years young, Charlotte is simply amazing!  Show details below:
 
If you can't make the show or miss it - here's a little summary of the Gerson Therapy:
 

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

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mama1960's picture
Replies 2
Last reply 5/10/2013 - 6:10am
Replies by: POW, Harry in Fair Oaks

During CAT scans today to map out radiation the doctor mentioned that a lot of the bone been "eaten away". Will the bone regenerate?

It is what it is.

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aldakota22's picture
Replies 7
Last reply 5/13/2013 - 8:20pm
Replies by: awillett1991, aldakota22, buffcody, Anonymous, kylez, WayneG

Tomorrow marks 20 months I have been on "Z".I am extremely happy with that milestoneThere are still issues I face . Aprils Cat scans showed small  spotsin the brain .With subsuquent  MRI, melanoma is detected.Will have additional scans in late June to monitor  them.Praying that with Gods help and"Z" that all will be good. Keeping my PMA at high level.Like all here striving to change name to NED.All in all feel great and live normal.Just retired in Feb from 2nd career at USPS and I am now collecting  early Socilal Security.Physical side affects on "Z" have been more of a nusance than serious.Never thought at this stage of life that planning for the future would be based on access to major melanoma centers.So be it.Beat the Beast.  Al

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Linny's picture
Replies 1
Last reply 5/15/2013 - 11:43am
Replies by: BrianP

I've been trying to follow news on this vaccine because I'm in the trial for it. It seems like good news for the vaccine may be forthcoming soon. So let's keep our fingers crossed that the Phase III trial data is as pivotal as they hope it will be. If it is, it'll be great for those with Stage III resectable melanoma who are MAGE-A3 positive. If I remember correclty from the literature I got at the beginning of the trial, about 65% of melanomas test positive for MAGE-A3.


http://oncology.healthace.com/011413/oncology_report_011413_s1.pdf

GlaxoSmithKline: MAGE-A3 (Phase III/NSCLC & Melanoma)

Success Could Open Up a New Platform; 40% Probability of Success with Global Sales Estimate of £1.2B in 2018

GlaxoSmithKline (GSK) could be a beneficiary in an emerging area which utilizes the understanding of cancer as an immune disease. GSK’s candidate is MAGE - A3, an antigen-specific cancer immunotherapy (ASCI), which has shown interesting phase II data. Pivotal phase III data in NSCLC and melanoma are expected in 2013. We see 5%-10% GSK NPV upside on positive data, and minimal downside on negative data given consensus expectations.

We expect pivotal phase III data for MAGE-A3 in mid-2013. This applies to MAGRIT (NSCLC) and DERMA (melanoma) studies, which are both event-driven. As the MAGE-A3 antigen is not expressed in normal cells in the body, the MAGE-A3 ASCI only targets cancer cells. The MAGE-A3 ASCI is highly specific for its antigen, and as a result the product has low potential to harm noncancerous tissues that lack the antigen. The minimal side-effects and good tolerability seen in the clinical trial program of MAGE-A3 (and other cancer immunotherapies) are particularly encouraging when compared to chemotherapy which often has toxic, poison-like side-effects (nausea, vomiting, hair loss, bone marrow depletion, etc.). MAGE-A3 therefore has potential not just as a product but also as a platform, as proving utility in adjuvant NSCLC or melanoma might open the road for GSK to treating perhaps dozens of cancer types with vaccines.

While we acknowledge that cancer vaccines are currently a high-risk area of development, reflected in our 40% modeled probability of success and £1.2bn 2018 global sales estimate, we see several reasons for optimism in the product: (1) phase II studies showed strong trends to MAGE-A3 improvements on survival (DFS, OS); (2) all MAGE-A3 trials so far show impressive safety; (3) phase III studies have much more power to show statistical benefits than the phase II studies; (4) GSK has used gene profiling information to potentially identify responders; and (5) GSK has used more powerful adjuvants (immune boosters) which produce higher-quality results in its phase III trials.

For now, the potential and the risks are high for MAGE-A3 (and the business division that could emerge at GSK if the product works). Consensus does not model MAGE-A3 generally, so we see little scope for downside.

Stage III, Unknown Primary; 1 positive node in left axilla

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thrashter's picture
Replies 2
Last reply 5/9/2013 - 8:36pm
Replies by: Tina D, kylez

I received the great news of being N.E.D. after my last scan. This info came to me from my surgeon. I have an appointment with my oncologist on Tuesday to see if further bichemo is going to take place. I'm torn on weather to continue(4th) round or not. If i am currently N.E.D. should i submit my body to further toxicity? Also I thought i would be much happier about hearing those words but it seems maybe not to have sunk in. Any others hearing they are N.E.D. and still feeling like nothing changed?

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Anonymous's picture
Replies 1
Last reply 5/9/2013 - 5:45am
Replies by: Anonymous
lisab60's picture
Replies 28
Last reply 5/13/2013 - 8:28am

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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lisab60's picture
Replies 0

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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It was truly an awesome day......walked 3.3 miles with 9 members of my family, even 2 of little grandkids who were only 4 and 5 when Jim passed.  The day was beautiful with beautiful people.  I had donations of $520.00 .....I was so happy for that....met Barbie Girl, Jackie Doss, Margaret Fowler, Cindy Rutledge.....so many people who have lost loved ones way too early.  I walked for all our Angels and for all warriors still fighting....Hugs to all of you. Thanks to Catherine Murrray and Kyle Clarke......

Take Care,

Sherron, wife to Jim FOREVER!

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Sherron's picture
Replies 4
Last reply 5/11/2013 - 1:47am

It was wonderful....9 members of my family...all walking in Jim memory, even my little grandkids who were only 4 and 5 when Jim passed.  It was Awesomse....I was able to earn $520.00 for the cause.  I am so proud of my friends and 2 people at this site who donated.  It was such a beautiful day...Met Barbie Girl, Donna Regan, Margaret Fowler, Jackie Doss....Just an awesome day, and for such a good cause.  I also walked for all of you here!!

Take Care,

Sherron, wife to Jim FOREVER!

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mama1960's picture
Replies 9
Last reply 5/12/2013 - 12:49am

Ok, I am on Fenogyl patch and hydracodone for pain from bone mets. The problem is, I am having a terrible time with constipation. I am drinking lots of water, eating lots of fruit, taking triple doses of Dulcolax and have even resorted to enemas. no joy. Any ideas?

It is what it is.

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I have been approached by a journalist from Bloomberg who was ts to speak with patients who have been on a trial for a PD1 or PDL1 drug. If you are interested please email me offline at tturnham@melanoma.org

Thanks

Tim--MRF

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François's picture
Replies 4
Last reply 5/9/2013 - 12:46am

Last week I had the results of the CT scan I had few days before, just after four month on Zelboraf. My oncologist said that 2 lungs nodules have disappeared and one has no significant size. In my groin, where I have been 4 times on surgery, I still have "something" that is 19mm. This "thing" has not changed on my last 3 scan and he said it's probably something that has nothing to do with, otherwise it would have reacted as the other nodules. He didn't even mentioned a biopsy. On the other hand I suggested him to stop the treatment and start a period of on and off to avoid resistance, as I could read on few posts but he said this is not yet clinically proved. I had a seboreica in my left arm for years that has disappeared as well, I find this amazing, because I could really watch shrinking day after day. Next scan is programmed for June last week and I hope been Ned for this day. Thank God and praying every day this drug keep on working on me and to all the people who are in the same situation.

François

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