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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Snickers60's picture
Replies 2
Last reply 5/11/2012 - 6:16am
Replies by: aldakota22, BrianP

As some of you know Wayne has had a terrible trial on ZELBORAF.    HIGH FEVERS, SHIVERS, BLOOD RED FACE, NO SUN AT ALL, couldn't sleep for fever and chills.   Well, we call MDA on Monday and they told us if it hit 101 degrees again to head to ER, and so we did.   They did a lot of test, and everything came out clean.   They took him off it for the 2 days and he started it again this morning as we were leaving the hospital.   Fever seems to be good at this writing tonight.    Cultures came back good etc.

BUT THE REALLY BIG NEWS IS:    they did a CAT of his chest and lungs.    We were told he had METS to both lungs.   Right and left.  GUESS WHAT....there was NO MET IN THE RIGHT LUNG evident on that CAT SCAN in the right lung.    AMEN !!!!!!!!!!!   We are praying this was just a FALSE POSITIVE from the PET !   Oh what wonderful news that is and would be if it holds true.

Even on x-ray - one on the left lung, but NONE on the right !     I'm taking that in BLIND FAITH.   Doc said even the right lung tumor was very small...early on on the game.

The Doc here wanted to cut his meds in half and the big guy at MDA (D'BOSS) said NO !   Full steam ahead with a full dose.   On the scan you could see where the tumor in the left lung had already shrunk in the CAT BEFORE AND AFTER PICS in only 2 short weeks.  

We're encouraged though it's been a very, very hard week.   Remember I am disabled with Lupus and Fibro and a hundred other things and Wayne is my caretaker.   Don't know exactly how this is going to work, but I know the one who does.   MY LORD JESUS and we TRUST HIM !

Hope you guys have had GOOD DAYS and BETTER HEALTH !

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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green8300's picture
Replies 35
Last reply 5/11/2012 - 3:28am


i was on the beach in australia half the year for 14 years,,,,i never put sun screen on,,,,,,,,,i have olive skin or so my mom told me,,,,,,,had a little thing on my back,,,,finally my dad payed for me to go to dermo,,,,turned out to be a .65 mm melanoma,,,,,i was freaked out and still am,,,,,,,,,,had a shave biopsy,,,,7mm submitted for processing,,,,,they say its a

 diagnosis   ,,,, malignant melanoma with extension to pap dermis clarks level 2,,,,,,,,

,microscopic description         there are atypical malancytes present both singly and in nests along the dermoepidermal junction, the melanocytes have large nuclei with prominent nucieoli and abundant cytoplasn with brown granular pigment occasional mitotic figures are present the lesions is broad and poorly circumscribed laterally the nests do not maintain discretion and merge with both adjacent nests and single cells, the cells with in the nests have lost cohesion , atypical spindled melanocytes are present in the nests with in the papilary dermis aswell, these nests are irregular in size and shape and the melanocytes within them are atypical, a patchy lymphocythic infiltrate is present beneath the lesion

note the neoplasm measure .65mm at its greatest thickness in these sections, the lesion is not ulcerated , a pathcy lymphocytic infiltrate is present beneath the lesion, one mitosis per square mm is identified


then i got it cut out and this is what came back from pathologist

excisional biopsy measurein 30mm was submitted for processing


there are sections of epidermis, dermis, and subcutaneous tisses present on these slides, there are atypical melancytes presentsingly and in nests in the epidermis adjacent to the prior surgical site which contains granulation tissue fibrosis and chronic inflamation and is covered with scale crust


skin and subcutaneous tissue with scar and persistance of melanoma


residual intraepidermal melanoma is present in these sections however the surgical margins are clear and the neoplasm appears to be completely excised and incidental excised intradermal melanocytic nevus is also present in these sections

any input would be greatly appreciated,,,,,,,,,ive been reading everything i can find,,,,i went to two top oncologists one guy said to do it the other kind of said i didnt need to,,,,and my dermo kind of thinks i dont need to,,,,,but she also did the wide excision,,,,,,and ur kind of not suppose to do that if u wanna get a good read off the drainage points so im confused and not relaxed about the whole thing,,,any input once again appreciated ,,,,,,thanks

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Columbus's picture
Replies 25
Last reply 5/10/2012 - 11:27pm


March 18, 1957 - March 30, 2012    "Boot2aboot"

Many patients on this site knew our sister, Choel Evans, affectionately as "Boots."  I'm sad to say that Choel passed away only days past her 55th birthday.   She became such an advocate for melanoma research this past year and she did all that she could to live despite the pain and suffering she endured every day.   She was diagnosed a year ago in March.  It was a very rough year.

To those of you sharing your experience here on this site, helping others to  navigate the clinical trials, or providing the valuable understanding, kindness and love...thank you.  Choel found a family of friends here.  She was so grateful to folks like Jimmy B and others.  She would call me in tears whenever a friend passed away.  You all became important loving friends to my sister, Boots.  

Best wishes to you for a successful & complete recovery!

Amy Buckley


Choel P. Evans, 55, of Galion, passed away on Mar.30, 2012 at Hospice House of North Central Ohio in Ashland, after a yearlong battle with cancer.  

Born Mar. 18, 1957 in Galion, she was the daughter of Anne J. Evans and the late Charles O. Evans. Choel graduated in 1975 from Galion High School where she enjoyed Miriam Sayre's Thespian class, playing the flute in concert band and showing her horse, Dusty, at the county fair. Many of Choel's activities in high school became lifelong passions for her especially acting, art, music and filmmaking. 

Choel earned her Bachelor of Fine Arts degree from the Columbus College of Art & Design and was one of the local Galion artists chosen to depict the venerable manors & churches of Galion for the 1976 Bicentennial. Several gift shops in town sold greeting cards with her pencil sketches of such classics like Brownella Cottage, Howard House and the Hosford-Kelly House. Her creative instincts and artistic talent carried through in her professional career as well. Choel was a filmmaker, location scout, set decorator and props master in Feature Film, Commercials and Theater. 

She was a member of the International Alliance of Theatrical Stage Employees (IATSE), local 209, and is credited with such films as "Traffic," and stage productions at the Ohio and Palace Theaters in Columbus. Many have seen Choel's work on commercials for Wendy's, Saks Fifth Avenue and The Limited. 

Choel's passion for the environment, wildlife, gardening, yoga and all things outdoors continued until her death. She was a regular hiker at Mohican, Lowe-Volk Park and enjoyed nurturing injured wildlife back to good health. She also volunteered time with the wildlife sanctuary in Crawford County. 

She is survived by her mother, Anne J. Evans of Galion; her brother, John O. (Karen) Evans of Farmington Hills, Mich. and her sister, Amy (Robert) Buckley of Los Gatos, Calif.; five nieces, Alissa, Lindsey, Kirsten and Teagan Evans and McKenna Buckley and her aunt, Mary Judkins of Peoria, Ill. Choel is also survived by several cousins that helped her during this difficult year.

Choel's family will receive friends from 3 to 4 p.m. Sunday, Apr. 22, 2012 at the home of Anne Evans where a memorial service will be held for friends and family at 4 p.m. Sunday, Apr. 22 officiated by Dr. Dan Turner. A memorial in Choel's honor will be placed at the Evans' family plot in Fairmont Cemetery, Jackson, Ohio. 

Memorial tributes in Choel's memory may be made to the Melanoma Research Foundation, P.O. Box 759329, Baltimore, MD 21275-9329 or on

Choel and her family were most appreciative for all the prayers and cheerful cards sent by neighbors, family, friends and members of the Community Christian Church of Galion.  


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H555's picture
Replies 2
Last reply 5/10/2012 - 9:39pm
Replies by: washoegal, Jeff's Mom

today was my first oncology consultation after starting Zelboraf on April 9th. it was very good, the doc described me as a strong responder, my lungs are markedly improved and no reason to postpone a trip in July to visit our son in the Peace Corps in Kenya. I feel so lucky that this drug is available to us, that I have access to it, that there's this board where others share experience, strength and hope. I'm a grandpa of 2 little ones and my greatest hope is to go long enough to see my 28 daughter as a mom. that's a year or two away.When I started Zelboraf I couldn't walk the dogs a mile, take in enough breath to blow my nose nor talk for very long. hard to believe that was only a month ago. So far Z is a miracle drug for me. Plan B if needed is Yervoy.


My profile info is updated. this cancer was a secondary from 1995 that came out of the blue in May/June 2011.

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Replies by: washoegal, Janner

I was scheduled for a ultrasound guided fine needle aspiration (biopsy) today and was told that i couldnt take any asprin, aleve, advil, excedrin, etc... as these are all blood thinners. My first question is why does this matter? and second is what do i do for my headaches? i didnt realize when i was at the doctors that all of these things were considered blood thinners and didnt get to ask what i could take for a headache. since i have a splitting one now, im hoping someone will know the answer to this. 





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CherylL's picture
Replies 4
Last reply 5/10/2012 - 7:06pm
Replies by: Phil S, CherylL, susanr

Hey Friends---

Have been very derelict in visiting the board, but just wanted to jump and and share that my husband Scott, now freshly Stage IV, has just had bag #5 of high-dose IL-2 administered here at UVA under the amazing guidance of Dr. Grosh. 

While his side effects are palpable (intense flu-like malaise, violent rigors/shivers, blood pressure drops, bloating, etc.) at this point, the timings are predictable, and the incredible crew here (amazing nurses, think EVERY week should be Nurse Appreciation Week!) are making this as pleasant an experience as possible. :)

We are highly optimistic my man will be one of the "total, durable, life-long responders!" 

Along with my husband's unflagging sense of humor, we are finding a valuable supplement to the traditional medical intervention is the shared success stories of others.

If you are---or know of--- a long-term Stage IV survivor following IL-2 treatment, would you take a moment and share your good news so I can relay to my husband (and our now 10-year-old twins---they were 4 at Daddy's original diagnosis)?

We do know stats and don't for a single minute live our lives or predict our family's outcome based upon them, so if you don't mind, please keep things positive!  :)

Many thanks, and KEEP FIGHTING, Friends!

Wife of Melanoma Masher, Scott, now Stage IV, with small "incompetent" mets in lungs

*Diagnosed Stage IIa in October 2005 (WLE/SNB - no nodes), Stage IIIc in October 2009 (radical neck dissection, multiple affected nodes), January 2010, supraclavical recurrence and resection, still Stage IIIc. June 2010, targeted radiation. August 2010, Clinical trial at NCI/NIH under Steven Rosenberg. March 2012, surgical biopsy at NIH reveals long-observed and stable nodes in lungs "changing" and verified melanoma. Stage IV, and ready to pull out the big guns! 







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LindyVA's picture
Replies 1
Last reply 5/10/2012 - 3:19pm
Replies by: Gene_S

My husband had four infusions of 5mg of Yervoy Dec 2011 and Jan 2012. His scans in March showed tumors in brain, lungs, pancreas were either gone or inactive. His also has had gamma knife twice in past 8 months which may have contributed to shrinking of bain nets. His doctor was very excited and said he believed my husband was a very positive responder.

He has developed a large tumor on one lower leg in an area where he had wounds in the past. His onc.  is concidering re-introduction. My husband  is the only patient on yervoy and has relied on me to keep him updated him and current on yervoy from my research. When I asked why not maintenance rather than a full introduction which might be less destructive on a 72 year old man which heart problems, the doctor stated he was not familiar with maintenance. I have seen several posts about this and wondered how others have done on maintenance vs a complete re-introduction.

It is less than six months from starting the yervoy and considering the onc said he was a good responder I wonder if the yervoy may still be working and maintenance would be less aggressive.

Any thoughts......

Thanking you in advance for your input....




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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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Richard_K's picture
Replies 6
Last reply 5/10/2012 - 1:44pm

Got results from Monday's scans.  Everything is stable with no change in what is probably dead or scar tissue.  Another set of scans in six weeks.


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Sharon's picture
Replies 3
Last reply 5/10/2012 - 12:36pm

My Husbands scans show that the turmor is GONE! We thank the Lord for answered prayers.  What he is dealing with now is not being able to make his own steriod after being on steriods on and off during treatment.  He is taking 15MG Hydrocortisone hoping his own steriods will kick in.  He is getting along ok just not the strength and energy he would like to have. We now see an Endocrinologist who is helping him deal with not making steroid. 

We are so thankful to many of you who post to this sight it has helped us along the way to understand Melanoma and the many treatments. We pray you too will have complete healing!  Sharon

God, Family, Friends and Dogs ~ it's all that really matters!

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My husband went to the dermatologist yesterday, he had 3 more spots she sent to be checked out. Praying they all come back negative!

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Replies by: natasha

Vitamin D Levels May Be Vital For Patients Who Suffer From Some Forms Of Leukemia

Easy Health Options Staff | Nov 05, 2010 | Comments 173

There are more than 259,000 people living in the U.S. who have leukemia or are in remission, according to the Centers for Disease Control and Prevention. Now, researchers have discovered a link between chronic lymphocytic leukemia and vitamin D.

The most recent study adds to previous evidence that vitamin D deficiency is a risk factor for the progression of several cancers, including colorectal, melanoma, lung and breast cancer. Low levels of this vitamin may lead to poorer outcomes.

For the new research, scientists from the Mayo Clinic discovered that cancer also progressed much faster in chronic lymphocytic leukemia patients who had insufficient vitamin D levels. These individuals were nearly twice as likely to die compared to patients who had adequate amounts of the nutrient.

The investigators also found that when vitamin D levels were increased, it led patients to a longer survival time.

Lead researcher Tait Shanafelt said that "between one-fourth and one-half of patients seen in routine clinical practice have vitamin D levels below the optimal range." He added that that there may be up to 1 billion people worldwide who have insufficient amounts of vitamin D.

Individuals with leukemia increase their vitamin D levels by consuming more tuna, salmon, eggs or mushrooms.



The best way to increase your vitamin D-3 is to spend 15 minutes a day in the sun between 10am and 2pm.

Everyone reading this posting should get their vitamin D-3 levels checked.

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

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Lauri England's picture
Replies 5
Last reply 5/10/2012 - 2:38am
Replies by: deardad, aldakota22, natasha

I was scheduled for scans last Friday, but I ended up having it done on Thursday at the ER.  I had a headache that started the Sunday before and had it all week.  Not a normal headache, but like a migrain.  I went to my family DR Wednedsay and she put me on Predisone and said it should help within 24 hours and if not go to the ER.  Well it didn't help so Thursday I went in.  They did an emergency CT scan of my brain and then the rest of my body.   They told me there was nothing that showed up on the scan at all anywhere.  What a relief.  Still not sure why the headachs.  They gave me vicodin for the pain and motrin.  These have been helping of course.  I have not had a headache since last Saturday.  I have an appt with Onc this Friday.  Even though I got the results of the CT already I still wanted to keep the appointment because this is the doctor that will be scheduling my furture scans.  If all stays good I want to go back to work in the next couple months and maybe try to live a normal life once again if possible. 

Don't sweat the small stuff. There are bigger fish to fry!

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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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Anonymous's picture
Replies 4
Last reply 5/9/2012 - 9:39pm
Replies by: Bubbles, Anonymous, rbruce

Anyone on anti-pd1 trial have a problem with their thyroid, high liver panel numbers, eyes or other organs??? Any side effects such a rash, joint pain, etc? Thanks for your comments

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