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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Replies by: POW, Germer, Kim K

Interesting!

 

http://www.dddmag.com/news/2014/03/new-cancer-drug-manipulates-signaling...
 

New Cancer Drug Manipulates Signaling, Energy Systems

Tue, 03/25/2014 - 1:59pm

A revolution in cancer treatment could soon be underway following a breakthrough that may lead to a dramatic improvement in cancer survival rates.

 
A new study at the University of Warwick, published in the journal Angewandte Chemie International Edition, has developed a new drug that can manipulate the body’s natural signaling and energy systems, allowing the body to attack and shut down cancerous cells.
 
Called ZL105, the drug is a compound based on the precious metal iridium. The study has found ZL105 could potentially replace currently used anticancer drugs, which become less effective over time, cause a wide-range of side-effects and damage healthy cells as well as cancerous.
 
Commenting on the breakthrough, University of Warwick researcher and study co-author Dr. Isolda Romero-Canelon, said: “The energy-producing machinery in cancer cells works to the limit as it attempts to keep up with quick proliferation and invasion. This makes cancer cells susceptible to minor changes in the cell ‘power-house’. Our drug pushes cancer cells over the limit causing them to slow and shut down, whilst normal cells can cope with its effects.”
 
Preliminary data indicate that the novel drug may be ten times more effective in treating ovarian, colon, melanoma, renal, and some breast cancers, according to data obtained by the U.S. National Cancer Institute. The researchers now aim to expand the study to cancers that are inherently resistant to existing drugs and to those which have developed resistance after a first round of chemotherapy treatments.
 
"Existing cancer treatments often become less effective after the first course, as cancer cells learn how they are being attacked. The drug we have developed is a catalyst and is active at low doses. It can attack cancer cells in multiple ways at the same time, so the cancer is less able to adapt to the treatment. This means the new drugs could be much more effective than existing treatments,” said study co-author, Professor Peter Sadler.  “Platinum-based drugs are used in nearly 50% of all chemotherapeutic regimens, exert their activity by damaging DNA and cannot select between cancerous and non-cancerous cells, leading to a wide-range of side-effects from renal failure to neurotoxicity, ototoxicity, nausea and vomiting."
 
He added: “In contrast, the new iridium-based drug is specifically designed not to attack DNA, but to have a novel mechanism of action, meaning that it could not only dramatically slow down and halt cancer growth, but also significantly reduce the side effects suffered by patients."
 
This research could also lead to substantial improvements in cancer survival rates. “Current statistics indicate that one in every three people will develop some kind of cancer during their life time, moreover approximately one woman dies of ovarian cancer every two hours in the UK, according to Cancer Research UK. It is clear that a new generation of drugs is necessary to save more lives and our research points to a highly effective way of defeating cancerous cells,” Romero-Canelon said.
 
Date: March 25, 2014

************************************************

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

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2014 - 9:48pm
Replies by: Socks, Maureen038, tschmith, Anonymous

3years ned after 2a just found liver met 2.5 cm on right lobe ,where is the best plave to be treated . can go anywhere in the world

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Kim K's picture
Replies 5
Last reply 3/25/2014 - 9:45pm

When I come to the BB, on the right hand column I don't see Who's in Chat right off the bat.  I do see it on occasion but am not sure if I have to log in first to see it.  (I will see what happens when I finish typing). If that's the case, few people will go into chat because it looks vacant.

IMHO - Please make the Who's in chat show up along the right hand side column from the get go without having to log in.  More peple will visit and it will be more active.  Same for when typing a response, all I see is the melanoma quick facts and a profile of some of the members.  The quick facts can be elsewhere instead of in the find support section, perhaps in education and home page, and the who's in chat can replace it.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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mwcollins's picture
Replies 1
Last reply 3/25/2014 - 9:41pm
Replies by: Carole K

Hi all, first I want to thank you all for all the incredible support and knowledge you have provided for both Kevin and myself. I was wondering if I could pick your brains some more. I would like to find a local support group for my whole family. I know being a caregiver lends itself to stressors different than those Kevin is going through and I would like to be able to meet others in person once in a while. I'd also like to find something for my boys as well if possible. I know they have concerns that most kids their ages don't have to deal with and their friends can't really relate. If anyone knows of any, please let me know. I have asked the case nurse assigned to Kevin's case, but she has yet to get back to me. Thank you all again for everything!!

Megan

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Replies by: Anonymous, sweetaugust, Lisa - Aust

Hi there,

My primary melanoma was in 2000, 2.0mm deep, upper right arm.  My melanoma metastesized to Stage IV to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

I was able to get into the clinical trial for the anti pd1, MK-3475. It has been working great for me.  I started MK-3475 (highest dose - every 3 weeks) Oct 31, 2012...and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was a couple days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder, but that subsided in a day or so. 

Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars for me, because I have read some stuff that made me think twice about that.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

Laurie

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dani_elle's picture
Replies 14
Last reply 3/25/2014 - 2:34pm

Hello everyone
Just thought i would share my husbands story with you all. We really dont know what to except, this is all still so new tu us.
Let me begin by saying.. My husband has always been pretty healthy. I can honestly say i have only seen him come down with any kind of illness about 3 or 4 times in 7 years! Well it all started about 6 years ago he developed a colorless callus on his left inner heel. He noticed it growing and did get it checked out 2 different times. Drs just ordered x-rays and said it was a callus that could be caused by his work boots ( Hes a cement worker.)
so years past by and the "callus" kept growing and started to bleed and have a smelly discharge. This is when i started to get worried. My husband was always self conscious about this "callus" and would NEVER let me see it!!! it was always covered with neosporin and a bandaid.

So fast foward to march 2011. A dermotologist did a biopsy and on april 18 he was diagnosed with melanoma. We were told that amputation was most likely going to be the plan of care. Later that day i recieved a call from another dermatologist who explained the disease to me & advised me to begin making funeral arrangements and prepare his will !!!!! ofcourse i broke down, i was still in shock... But i managed to put on a straight face.. I had to! We have a 4 year old daughter who i refuse to raise on my own!!!! shes daddys little girl & hes my other half. I wasnt about to start planning a funeral for my 26 year old husband!!!!!

So then next step we talked to an oncologist who answered some of our questions, referred us to a surgeon, & Ordered a CT scan. The ct scan came back normal, But it wasnt until later when i requested records
where i read about an abnormal ct scan "lung nodule" I dont think theres anything normal about that! I asked the Dr to explain the ct scan and she said sometimes these nodules arent cancerous. Is this trueeee?!?!? well she wants to repeat the ct scan in november.

On May 24th my husband Miguel had a wide local excision and a sentinal lymph node biopsy. His wound was left opened and hes got a wound vac over it. A nurse comes out 3 times a week for dressing changes. He didnt tolerate the negative pressure vac very well, the dressing changes were especially painful. Ive never in my life seen a man in so much pain before!!!

We went back to the surgeons for his weekly checkup where the pathology report was given to us. It came back he had a breslow thickness of 19mm & clark level V. The margins were free of cancer so that was a relief.. Atleast his foot can b saved!! Although Melanoma cells were found in 2 of 3 lymph nodes. From what ive read this is not good at all, but i believe in GOD and nothing is impossible for him. The next step is his lymph node dissection which is scheduled for the 21st or the 1st, whichever date is available. Hes also going to have reconstruction surgery on his heel the same day. Im hoping for the best!
I was also wondering what your opinions were on aloe vera. Alot of people reccomend it, so my husband had been drinking aloe vera gel along with supplements from Forever Living Products.

Thanks for reading!
Danielle <3

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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page85's picture
Replies 1
Last reply 3/25/2014 - 12:03pm
Replies by: hbecker

Wondering how rare it is for melanoma tumors like mine to happen--I saw mine when it was removed, and it looked like my little pinkie in shape, and was 6.5mm in depth and about 2-1/2 inches sideways in width located on my back--it had grown underneath the skin with nothing on top showing.  It had already metastasized to one underarm lymph node and was diagnosed as Stage 3B.  All of the photos of melanoma I see on the internet have a colored spot on top of the skin and under the skin looks like tree trunk with roots.  PLEASE let me hear from you if you had a sideways (horizontal) growing melanoma tumor.  THANKS!!!!

page85

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Juanita's picture
Replies 4
Last reply 3/25/2014 - 10:44am

Hello Everyone. My husband Jay was diagnosed with melanomia last May 28 2013. We will always remember the date it was our 19 wedding anniversary . The surge said he got all the cancer so we didn't see an oncologist . In July  he had to have his aortic valve replaced.  Afterwards the shortness of breath didn't get better. Long story short, he has stage 4 melanomia. It's in his lungs and liver. He's had a round of chemo . They are now going to try to get him on the Tafinlar drug. We're going to the doctor tomorrow to see if he can take it.

 That's how I found this group, researching the drug. He is 54 will be 55 next month and this has been a nightmare year for us. He's on his disability and that's a blessing. He's never been sick he's one of those folks that is never ever sick. This cancer has forever changed how we look at life. I'm so very glad I found all of you . I found a post of a lady who husband had stage 4 and she was talking about this drug. I can't recall her name but she's the reason I'm on here. It was something wife of . I hope she's still on here. Her post was last year and she talked about the things I'm worried about also. 

I'm sorry for being so long winded . Thank God for this group. Thank you one and all .Juanita , wife of Jay .

Now faith is the substance of things hoped for, evidence of things not seen.

Hebrews 11:1 

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bigb0624's picture
Replies 2
Last reply 3/24/2014 - 8:03pm
Replies by: bigb0624, pigs_sty

I recently read that blocking autophagy with malaria drug may help overcome resistance to BRAF drugs.  The drug is hydroxycholoroquine (HCQ). 

Does anyone have experience with this treatment, and if so, what have been the results?

Barry

 

 

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Hope to See you in Chat tonight!...

Love and Light

Carole

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Scuba Doc's picture
Replies 8
Last reply 3/24/2014 - 4:20pm
Replies by: POW, Scuba Doc, BrianP

Anyone have any experience with the Novartis drug --LEE011 for CDK4/6 and any severe side effects.I am possibly starting a clinical trial next week----thanks in advance ----LindaG

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Brendan's picture
Replies 8
Last reply 3/24/2014 - 8:19am

Hi Everyone,

 

I started a BMS PD-1 trial in December and I just had my 12 week scans.  My target met (right lung) shrunk by 78%.  It is now 1.0 cm x 1.0 cm (originally 2.3 x 2.0).  My smaller met (left lung) has resolved!

 

Thanks for your support!  

 

Brendan

 

(I also posted this on MIF)

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casagrayson's picture
Replies 4
Last reply 3/23/2014 - 8:20pm
Replies by: Anonymous, JoshF, casagrayson

http://trove.com/me/content/9pPaB?chid=78095&utm_content=tedigclnx201403...

 

UPDATED, SUNDAY 12:35 PM: James Rebhorn died Friday afternoon from melanoma. The actor was diagnosed with melanoma in 1992 and died at home in South Orange, N.J. peacefully around his family. He had been receiving hospice care after being released from NYU Hospital. “He was a wonderful, wonderful man. I represented him since 1990, and I represented him for my entire career,” said his Leading Artist rep Dianne Busch. “He was an absolute joy to work with. He was very funny and was warm. He was drawn to projects with a social conscience. One of his favorite movies that he did was Lorenzo’s Oil because it made a difference. He had a very strong faith and loved his family. His family was extremely important to him and I saw him make career sacrifices for them.” His is survived by wife Becky, and two daughters Hannah and Emma. His family is planning a religious service arrangement to take place in New Jersey.

PREVIOUSLY: The longtime character actor, whose recent recurring credits include playing as Carrie Mathison’s father Showtime’s Homeland and Special Agent Reese Hughes on USA’s White Collar, died Friday at his home. He was 65. James Rebhorn got his start in theater before moving to television where he starred on soaps Guiding Light and As The World Turns in the 1980s, earning a Soap Opera Digest Award nomination for the latter. As a character actor Rebhorn built a career playing figures of authority in films like Independence Day, Scent of a Woman, Carlito’s Way, The Talented Mr. Ripley, The Game, Regarding Henry, and Meet the Parents. During his prolific TV career he guest-starred as three different characters in on Law & Order, played the D.A. in the two-part series finale of Seinfeld, and appeared on Third Watch, The Book Of Daniel, 30 Rock, Big Lake, 2012′s Coma miniseries, and HBO’s Enlightened. Rebhorn’s recent big screen credits include Real Steel, Baby Mama, The Odd Life Of Timothy Green, and Sleepwalk With Me.

Strength and Courage,

Susan

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lissa_luv's picture
Replies 8
Last reply 3/23/2014 - 8:04pm

Help! I need some advice from someone who has gone thru this. I was recently diagnosed with melanoma in January of this year. I had the wide excision surgery to remove the primary on my right leg. I had the Sentinel Node Dissection. 4 lymph nodes were removed, and 2 were found positive for melanoma. My surgeon suggested a radical surgery to remove all lymph nodes in the area. After speaking with my oncologist today, I was told that this surgery would not be necessary due to the complications that it might cause. I was told that I should start immunotherapy with Interferon. I'm not sure if I should go thru with the surgery or just start treatment. Should I get a second opinion?

 

Thanks!

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