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

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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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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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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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Replies by: Bob B., green8300, Anonymous, Janner, LynnLuc

ive been told by some to have it and by some not to, as its rare but im dealing with somthing perhaps serious, ive all ready had the wle with clear margins, but i had a mitotic rate of 1, i was wondering if anyone had a story about someone with a .65 mm and had a slb or was told not to> thanks

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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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alicia's picture
Replies 5
Last reply 5/6/2012 - 12:20am

Hello Friends, Just wanted to thank you for your prayers and support.  I was very anxious about this  PET scan I had last friday, especially after watching my best friend pass away from melanoma just two months ago.  we started out at the same stage so it was very hard and I was nervous that it could be spreading inside of me.  Anyways thankfully my PET scan showed" no hypermetabolic uptake in the lung nodule or hilar lymph node at this time."  I'm so super excited about this news and just wanted to share it with the rest of you:-)  I go today for surgery to do a 5mm wide excision of a severly atypical mole (this is my 5th I think atypical area having excised) that wasn't fully excised during biopsy and i'm a little nervous about that but very thankful after today I don't go back to the dr until June:-)  Much love to you all,


Alicia B. stage III(+SNB) interferon, 3 primary melanomas (stage 1, stage 2, and stage 3) and 5 atypical lesions.......but who's counting;-)

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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  

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

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Snickers60's picture
Replies 6
Last reply 5/5/2012 - 8:31pm

Someone/anyone tell me about your joint pain with ZEL ?    Wayne got up this morning (day 8 on Zelboraf) and could barely move.   The pain has gotten quite intense as the day has gone on.


What do you do for it ?     Pain patches, pain meds, etc ?    Any secrets or alternative meds that helps ?



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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Anonymous's picture
Replies 9
Last reply 5/5/2012 - 4:50pm
Replies by: Joan C, Anonymous, Linny, SoCalDave, natasha, gabsound

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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
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 (323) 307-6921

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

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deardad's picture
Replies 6
Last reply 5/4/2012 - 7:17pm

Such bad news today and I'm devasted. My dad has 6 new brain mets and progression through the body.

They are starting WBR next week and he is starting Temolozide tomorrow. So sad...what can I expect can someone please advise me.

Thank you in advance.


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Gene_S's picture
Replies 22
Last reply 5/4/2012 - 12:23pm

Before reading the link posted below, I am fully aware that there will always be some readers of this forum group that still believe that the SUN causes melanoma...

It's time to get them educated and move forward...

As we learn more about the causes of melanoma , it is becoming a fact that the LACK of sunlight is the biggest cause of melanoma.

Sure tanning beds are to blame and rightly so because they are providing the wrong type of  UV's.  What needed to be addressed here is the fact that almost all melanoma's occur on parts of the body that never receive any sun light!  Also that the increase in melanoma is due to the fact that more people never get the benefits of the sun as they are working indoors for their day job and so in my case are working night turn and sleeping during the day!

Below is a link with more up to date info, see:

PS. In my opinion every person reading this thread should be tested for the 25-hydroxy vitamin D-3 test.

However, don't wait until it is to late thinking that your oncologist will recommend this test for you.

Best wishes,


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

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