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.

Expand/ Collapse Topic
 
Replies By
View Topic
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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 5/9/2013 - 5:45am
Replies by: Anonymous
http://www.MelanomaResources.info

Login or register to post replies.

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"

Login or register to post replies.

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"

Login or register to post replies.

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!

Login or register to post replies.

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!

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

DeniseK's picture
Replies 8
Last reply 5/11/2013 - 1:34am

Hello my fellow Warriors!  Long time huh?  Yes I'm still alive and kicking, kicking pretty good actually.  It's been a rough couple of months but I'm making it through.  Last I posted I was suffering horribly from nausea.  I lost 30 lbs in a month and was super weak.  My Z dosage was 3 x 2, I dropped it myself to 2 x 2 just to feel better, my doctor was a bit upset with me but it's still working and I"m definately feeling better.  Sometimes I will stop taking it for a few days if I"m feeling bad but go right back on it, so far so good nothing is growing and my tumors have significantly decreased or disappeared.  I"m not NED as of yet but hoping to get there.

My WBR didn't kill the brain lesion but either the WBR or the Z reduced the size from 12mm to 8mm.  I"m going in for SRS starting June 10th.  I had to delay things because I"m going on a cruise this next Monday-Friday.  I'm going to Mexico so I have plenty of sunscreen.

I just wanted to drop in and let everyone know how I"m doing.  I"ve been cruising around the site seeing how people are.  May marks the 5th month that I've been on Z and I'm getting a little anxious hoping it'll keep doing it's thing, but the good news is my brain is officially stable for 12 weeks and I'm looking into trials.  I hope there's something out there that will cure us all!!

Lots of Love,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Login or register to post replies.

mishcakes's picture
Replies 19
Last reply 5/11/2013 - 11:59pm
Replies by: mishcakes, washoegal, michelleaudie, Janner, Anonymous

My sister made me an appointment to see a dermatologist as she was concerned about my acne. The doctor had a brief look at my face, and as he was leaving the room he asked off-hand if I had anything else I wanted him to look at, suspicious moles, yadda yadda. I said actually, yes - one mole that I kind of had my eye on for the last year or so, on my upper right thigh, that was small but two colors, black and tan. He took a look and said, yep, let's remove this, and before I knew it the nurse was back to prep me for a biopsy. Funnily enough I ended up fainting for the first time ever as he was cutting it off, falling into the doctor and spilling my glass of water all over the floor. I woke up still in my underwear after what felt like a nice nap, and quickly realized "oh wow, I'm still at the doctor's office" - weirdest feeling ever! As I left the office I hoped that that would be the end of it, not wanting to have to face the staff again as "that girl who passed out".

 

Unfortunately, as would be evidenced by my joining this forum, that wasn't the end of it. I got that horrible call that we've all had last Friday. "Beginning stages of melanoma, we're scheduling you for a wide local excision, asap. Can you come Monday?" I took notes, said thanks, and called my husband. Then began the internet research. Oooooh boy. Having had no family history of melanoma and not really knowing much about it, all of a sudden the true nature of my diagnosis hit me like a sack of bricks. Since the nurse hadn't sent along the pathology report and the office had since closed for the weekend, all I had to go on was that I was in the "beginning stages" - did that mean stage I? II? How deep was it? I quickly became versed in Breslow's depth, Clarke level, 5-year survival rates, recurrence, metastasis, and the melanoma's favorite spots in the lungs, liver and brain.

 

Despite my best efforts to remain sane and rational, everything I felt or saw became a death sentence. I'd been feeling light-headed and had more headaches since the fainting - it's spread to my brain. I felt a small bit of pain around my left armpit - spread to the lymph nodes. Pain in my chest - it's spread to my lungs. I had a mild sunburn earlier in the spring - oh god, I am such an idiot. I sobbed into my husbands shoulder, "all I want is to grow old with you". Suddenly our happily-planned life of remodeling our home, traveling, enjoying nature, being together, starting a family - began to unravel. "I am 31 years old, why me, why now?"

 

On Monday I received the report. I will paste it below - and would appreciate any feedback from those more familiar with some of the terms. The doctor cut out a chunk of my leg and sewed me back up, and thus begins the waiting game for the next pathology report. I live in Mammoth Lakes, CA - aka, high-altitude (oops) middle-of-nowhere mountains, so will have to find an oncologist nearby, likely in the Carson City/Reno area. If anyone has an recommendations for doctors in this area please let me know.

 

So, here I am. I'm 31 years old, fair-skinned (Scandinavian ancestry), dark blonde hair and brown eyes, no family history of melanoma, or cancer for that matter, save my paternal grandmother who died of ovarian cancer. I grew up in northern Illinois, and spent summers swimming and playing soccer, but always with sunscreen. I did use tanning beds occasionally in my late teens and early 20s - a few times to prepare for a vacation to Mexico, a few times as it helped clear the acne on my face. Holy hell, if I'd only known...

 

I moved to Mammoth Lakes in 2009, elevation 8,000', and when going on hikes or planning on being outside for any period of time would always wear sunscreen - but if walking to the grocery store or poking around in my garden for awhile, would not. Of course I wish I could kick myself now, but I didn't burn and wasn't out for "long", so thought it was okay. I had a friend randomly stop over early spring, and as it was one of the first nice days of the season, we sat outside to chat. As it happens, we chatted for longer than expected, and I burned mildly on my right shin. Idiot, idiot, idiot...!

 

Here are some of the questions that I still have:

- Should we consider moving to a lower elevation? We love living here, but it's not worth my life.

- Does anyone have a recommended oncologist/hospital in the Carson City or Reno area?

- Besides staying inside or in the shade between 10-4, covering up, wearing sunscreen, exercising and eating healthily, does anyone have any further recommendations for lifestyle changes?

- My husband and I are going to create a full body map of my moles and spots, complete with pictures and measurements, to augment checkups to the derm/oncologiest. Is there anything else we should be doing?

- Should I find a counselor/therapist? I am still terrified, and don't want to lean on my husband too much.

- Will I be able to become pregnant if I have to go through any further treatment? Does pregnancy increase the likelihood of the cancer recurring?

- Will I ever feel normal again?

 

Thanks and much love to you all.

 

Pathology report (original biopsy):

Microscopic diagnosis: Melanoma

Microscopic description: The biopsy shows an asymmetric and irregular proliferation of single and nested atypical melanocytes at the dermal-epidermal junction. The single and occasional nested atypical melanocytes are present above the basal layer of the epidermis. The underlying papillary dermis shows mild dermal fibrosis and chronic inflammation.

Gross description: Received in formalin is a fragment of tan tissue measuring 1cm. Entirely submitted.

Comment: The melanoma is mostly in-situ with occasional atypical nests are noted in the papillary dermis with an approximate depth of 0.12-mm. These atypical nests appear connected to the overlaying epidermis in some sections. The neoplasm extends to the margins. A definitive re-excision is recommended.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Login or register to post replies.

Pages