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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AlanM's picture
Replies 3
Last reply 5/8/2012 - 5:38pm
Replies by: triciad, aldakota22, Karin L

I was diagnosed Stage 4 (brain met)  in  April 2011. Just had my 1 year scan and it was all clear! I treated the brain met with the gamma knife in May, 2011. And then ipi in the fall. So far the brain met has not disappeared, but has shrunk and swelling has subsided. Anybody have experience with how long it can take for the met to disappear completely? Anyway, just thankful to hear the good news today. And thank you to all those that post and respond on this site. The information I have gathered here has been very helpful.  Regards, Alan

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worriedwife's picture
Replies 1
Last reply 5/7/2012 - 2:34pm
Replies by: Janner

My husband was dx with mm in 2000. i really dont remember the specifics of his classification, except that it was serious. sentinal node mapping showed micro mets to level 1 lymphnodes in left arm. He was only given a small chance of survival at the time. WLE and a year of interferon took its toll on his body, but 11 years later he is still here. 

He was recently hospitalized for diverticulitis. They did not do surgery at the time, because it responded well to antibiotics. CT enterogrphy results show a possible fistla. (he gave me this info over the phone so i done know where in hus intestines.) He is scheduled for a colonoscopy, but not until early june. I read that recurrence frequently happens in the intestines. Should this make me push to have them move his colonoscpy sooner? Could there be any relation to the fact that his primary lesion was on his lower back, just about even with his liver?

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yoopergirl's picture
Replies 4
Last reply 5/8/2012 - 5:35pm

My tumor on my arm is just getting bigger and I have to wait until June 3rd for my cscan, just had 3 treatments of yervoy and then the side effects were too bad to have the last one and that is a big concern of mine that only 3 does would not shrink these tumors. So has anyone had a response without the full course of treatment?  Thanks in advance, I know so little about my cancer and everyone here seems to know so much I do know that I am stage 4 with mets in my lungs, arm, lymph node and possib le stomach.

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My husband has been on Zelboraf for almost 3 months when his oncologist told him to take a break from Zelboraf because his blood work results are showing his liver is being compromised (bilirubine, alkaline numbers, etc. are high).  We don't know at this point if this is due to the chemo or cancer.  Since being off Zelboraf, about  7 days now there has been some improvement in liver #'s, but they haven't lowered enough to go back on to Zelboraf according to oncologist.  My husband has a ct scan this Wednesday to see what is going on.  His original cancer pain since starting Zelboraf has gone away so we're hopeful it is working.  If there is liver damage I wonder if he'll be able to go back on the treatment or pursue another treatment (we've been looking into Yervoy and clinical trials).

Has anyone out there had a similar path? 

Thanks for any helpful responses.

Remaining hopeful. 

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deardad's picture
Replies 1
Last reply 5/7/2012 - 11:51pm
Replies by: Phil S

Hi there just wanting to know if anyone has done well on Temodar with brain mets? Any survivors who combined Temodar with WBR?

I'm loosing hope.

Nahmi

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AnnaBanana30's picture
Replies 9
Last reply 10/13/2012 - 8:17pm

To say I'm devastated would be an understatment. My dad first found out he had melanoma in late 2008 when my mom discovered a large mole on his back that was half red and half black. He immediately went to the doctor and they removed it...it was stage 2 I believe at that point. By March 2011 he was stage 3 and by early fall 2011 he was stage 4. He did several rounds of Temodar, Yervoy and radiation and nothing would slow this beast down.

 

Watching him go through all of this pain and suffering has been excrutiating to say the least. I hate this disease and what it did to him. The only comfort I've been able to find is that he is out of pain and is in paradise...pain free, next to God. I will see him again. He'll be up there waiting on me. It is my life mission to spread the word about this terrible cancer. There needs to be more public knowlege on how serious and deadly melanoma.

 

I hate this.

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bruski1959's picture
Replies 6
Last reply 6/1/2012 - 3:33pm

Jackie had her 4th Yervoy infusion 84 days or 12 weeks to the day from her first Yervoy infusion. Had to delay the 4th treatment while Jackie completed a round of antibiotics for pneumonia. As usual, Jackie has had a lot of fatigue. Had nausea too that was treatable with anti-nausea meds. Next oncology appointment is in 10 days. Expect to get the next PET/CT scan scheduled soon to compare with the last scan done in January prior to the first Yervoy infusion. Hoping and praying that the melanoma tumors in Jackie's left axial lymph nodes, lungs, and liver have responded well to the Yervoy treatment. We're coming up on six months since Jackie's stage 4 diagnosis. We're counting down the days to our 20th wedding anniversary. We will be renewing our wedding vows with friends and family on June 9th at our home church.

Thanks,

Bruce and Jackie

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My partner has just finished 10 sessions of whole brain radiation. This had the expected side effects - fatigue, nausea etc. Some interesting facts: the nausea hit at the same time each day (3am) and was unlike the usual "throw up" ie no discernible smell. Anti nausea meds were prescribed only after we reported the side effects and these were wonderful! We'll request them straight up next time! The worst symptoms were during the last 2 sessions and our biggest fear was the accumulative effects of radiation and not knowing where the peak would be. 2 weeks after his last session he still has some slight nausea but is otherwise good and living well. Next step is more scans to see if there are any more brain mets. Then the possibility of 2 sessions of targeted radiation. This seems to be standard treatment in Australia. Hope this info helps!

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Snickers60's picture
Replies 6
Last reply 5/9/2012 - 8:15am

Anyone have this side effect ?    Poor thing is burning me up here in the deep south.   Wears winter warm ups - robe - blanket over head.

Is his blood thin you think ?    Sorry to be such a pest but we are so new at ZEL !

Thanks for your help.

Nancy  (wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Webbie73's picture
Replies 5
Last reply 5/7/2012 - 6:36pm

I need some help with sunscreen. I am allergic to chemical sunscreen but they did work. Now I am using physical sunscreens and I don't think they are working. Just running errands in and out of stores and the car results in a pink chest. I was using SPF 30. Any suggestions? And yes I was wearing a hat but my upper chest still gets exposed...not interested in wearing a turtle neck in warm weather. ;-)

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green8300's picture
Replies 2
Last reply 5/6/2012 - 2:12pm
Replies by: Bob B., Minnesota

is a mitotic rate of 2 considered high? with no ulceration and a .75 thickness?

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Thank you to all those who have signed up to support the Outrun the Sun Race in May.  We have seen some great support and lots of interest so far for both the Race in May as well as our annual race in Indianapolis.

There is still time to participate in the Race in May and you can participate wherever you are located. 

 

The Race in May is a "virtual, yet real" run/walk that will occur throughout May (National Melanoma and Skin Cancer Awareness month) and anyone can participate no matter where you live.  You can make this event whatever you want it to be by creating a team or by participating on your own. Here's a link to the registration web site.www.raceinmay.kintera.org.  

Outrun the Sun, Inc. is dedicated to building national awareness of melanoma and other skin cancers, educating communities about preventive measures that reduce melanoma’s incidence rate, and to raising funds for melanoma research, leading to effective treatments and a potential cure.  For more information on Outrun the Sun please visit the website www.outrunthesun.org

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Snickers60's picture
Replies 1
Last reply 5/6/2012 - 11:41am
Replies by: Minnesota

Wayne loves his new clothes from COOLIBAR !   They are not inexpensive, but well worth it if they keep him Safe !   They have really great colors

and styles too.    He loves his new Crocodile Dundee Hat ! 

Thought someone else might be interested.

Blessings and Health to all,

 

Nancy (Devoted wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Low Oxygen Levels Could Drive Cancer Growth, Research Suggests

ScienceDaily (May 3, 2012) — Low oxygen levels in cells may be a primary cause of uncontrollable tumor growth in some cancers, according to a new University of Georgia study. The authors' findings run counter to widely accepted beliefs that genetic mutations are responsible for cancer growth.

 

If hypoxia, or low oxygen levels in cells, is proven to be a key driver of certain types of cancer, treatment plans for curing the malignant growth could change in significant ways, said Ying Xu, Regents-Georgia Research Alliance Eminent Scholar and professor of bioinformatics and computational biology in the Franklin College of Arts and Sciences.

The research team analyzed samples of messenger RNA data-also called transcriptomic data-from seven different cancer types in a publicly available database. They found that long-term lack of oxygen in cells may be a key driver of cancer growth. The study was published in the early online edition of the Journal of Molecular Cell Biology.

Previous studies have linked low oxygen levels in cells as a contributing factor in cancer development, but not as the driving force for cancer growth. High incidence rates of cancer around the world cannot be explained by chance genetic mutations alone, Xu said. He added that bioinformatics, which melds biology and computational science, has allowed researchers to see cancer in a new light. Gene-level mutations may give cancer cells a competitive edge over healthy cells, but the proposed new cancer growth model does not require the presence of common malfunctions such as a sudden proliferation of oncogenes, precursors to cancer cells.

"Cancer drugs try to get to the root -- at the molecular level -- of a particular mutation, but the cancer often bypasses it," Xu said. "So we think that possibly genetic mutations may not be the main driver of cancer."

Much of cancer research so far has focused on designing drug treatments that counteract genetic mutations associated with a particular type of cancer. In their study, the researchers analyzed data downloaded from the Stanford Microarray Database via a software program to detect abnormal gene expression patterns in seven cancers: breast, kidney, liver, lung, ovary, pancreatic and stomach. The online database allows scientists to examine information from microarray chips, which are small glass slides containing large amounts of gene material.

Xu relied on the gene HIF1A as a biomarker of the amount of molecular oxygen in a cell. All seven cancers showed increasing amounts of HIF1A, indicating decreasing oxygen levels in the cancer cells.

Low oxygen levels in a cell interrupt the activity of oxidative phosphorylation, a term for the highly efficient way that cells normally use to convert food to energy. As oxygen decreases, the cells switch to glycolysis to produce their energy units, called ATP. Glycolysis is a drastically less efficient way to obtain energy, and so the cancer cells must work even harder to obtain even more food, specifically glucose, to survive. When oxygen levels dip dangerously low, angiogenesis, or the process of creating new blood vessels, begins. The new blood vessels provide fresh oxygen, thus improving oxygen levels in the cell and tumor and slowing the cancer growth-but only temporarily.

"When a cancer cell gets more food, it grows; this makes the tumor biomass bigger and even more hypoxic. In turn, the energy-conversion efficiency goes further down, making the cells even more hungry and triggering the cells to get more food from blood circulation, creating a vicious cycle. This could be a key driver of cancer," Xu said.

Xu explained that this new cancer-growth model could help explain why many cancers become drug resistant so quickly-often within three to six months. He stressed the importance of testing the new model through future experimental cancer research. If the model holds, researchers will need to search for methods to prevent hypoxia in cells in the first place, which could result in a sea change in cancer treatment.

Additional authors of this study include Juan Cui, Xizeng Mao and Victor Olman, all of UGA, and Phil Hastings of Baylor College of Medicine. Xu also has a joint appointment with Jilin University in China.

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

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Anonymous's picture
Anonymous
Replies 0

RESEARCH SEMINAR: Thursday, May 10th • 5:30 p.m. to 7:00 p.m.

“Melanoma 2012: Transforming Cancer
Treatment Paradigms”
Steven J. O’Day, M.D.

Beverly Hills Cancer Center

8150 Beverly Boulevard
Los Angeles, CA 90048

CONTACT : Heather Grant  (323) 307-6921      HGrant@BHCancerCenter.com (323) 307-6921

Hors d'oeuvre and beverages provided • Free parking in the rear of the building

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