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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webpatient's picture
Replies 6
Last reply 5/12/2012 - 10:03pm

Had melanoma surgery on my right shoulder in january 2012; level one; fully wide excised; negative lymph node biopsy; awaiting first observational meeting with dermatology/surgery team after operation; now scheduled for mid june

Yesterday felt a 'bump' above my left ear, that felt / looked (from best look i could get in mirror) like a pimple infected with hair follicle and irritated by cpap mask strap.

A scab formed over it, which I accidentally broke while touching it, and it is oozing a bit right now (no blood). It just seems like an inflamed pimple; cant see it well in mirror partially covered by hair.

Am i overreacting in asking to see dermatologist before mid june scheduled appt -- can another melanoma develop so quickly as it starts oozing?

It wasnt oozing yesterday, just felt like a 'bump'

Currently thinking of putting some antibiotic cream on it to see it heals. But, given the melanoma

Appreciate any thoughts

 

 

 

 

 

 

 

 

 

 

 

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renakimu's picture
Replies 2
Last reply 5/12/2012 - 8:05am
Replies by: triciad, aldakota22

mother had her appointment with onc this week!NED, 1 year and 3mnths after we found out about melanoma!

thank you all and i wish everyone NED 

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Replies by: Jeff's Mom, jmmm

Wayne just got out of the hospital yestesday after 3 days  - after developing fever that got to almost 102 over last weekend.  It always started out ok in the morning and by night time it was getting higher....causing difficulty sleeping.

So we call MDA and they said it if gets over 100.4 and definitely over 100.8 to head to the ER again.   WHAT............what does this mean ?   We can't live at ER.    Every time it seemed that he had been outside, whether to just get in his HOT car at work to drive home or walk into the grocery, his fever would shoot up and keep getting higher at night.

Are any of you experiencing these problems with fever.    Said his liver enzyme was like 1 pt above what it should be and too much magnesium.

Lord, how are we going to do this.  I have pulled my back out that I worked YEARS TO GET HELP FOR AND FINALLY did......and now it's gone again from dragging luggage to the hospital.   I'm very debilitated with lupus and fibro and spent the day in bed.   We both need taking care of and I don't know how this is going to work.   How depressing.   

Any input would be appreciated if you understood anything I said.   I'm so tired after hospital I want to hang me, dang me.

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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Eileen L's picture
Replies 5
Last reply 5/11/2012 - 7:08pm

I am so ecstatic! Just got off the phone with the trial coordinator. I will be starting the Genentech Braf/MEK trial on Thursday of next week. It has been a crazy three months for me but I feel I am finally on the right path. Thx to everyone on this board for your encouragement and suggestions. I am looking forward to getting started and shrinking that pesky adrenal gland tumor!

Eileen L

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Anonymous's picture
Replies 5
Last reply 5/11/2012 - 4:44pm
Replies by: Janner, green8300, natasha, Anonymous

I have been reading about so many cases of misdiagnosis.  Are second opinions required for atypical too? 

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Hi everyone,

As I posted the other day, I had another massive diarrhea attack, this time w/fever, but as it was brought down w/Tylenol and Immodium (in addition to steroids), Dr. W. allowed me to wait to go the ER till after the graduation.

Long & short of it, they saw no perforation, and my bloods were good (not happy that I've lost 15 lbs...who the heck loses weight on Prednisone?  They definitely think that it's related to my previous gastric by-pass.  Yep, get a guinea pig again!  I'm now having diarrhea once/twice a day, and I take Immodium after.  They think that since immodium doesn't usually work w/Ipi induced colitis, that it's because of the by-pass. 

My daughter graduated w/an Associates in Dental Hygiene, a very rigorous program.  The young women (and a few men) usually go on to pursue their Bachelors while working as a hygienist.  One of the first speaker the top of the graduating BA's.  Her words were "Six years ago, I was getting ready for this ceremony and I thought it was the most important thing in my life.  Then I had a head and neck exam by my fellow student (they all work on each other) and was then diagnosed with Non-Hodgkins Lymphoma.  That early exam could have very well saved my life, and it certainly lead to a much earlier diagnosis, and treatment, as I was feeling fine."  Now this beautiful young woman is going into the public health field so she can help others.

Needless to say, as soon as she opened her mouth, I was sobbing in my seat, and my daughter was sobbing in hers.  Thankfully, I brought enough tissues.  This was a big lesson to me...I've been so consumed with Melanoma for the past 1.5 years, I've neglected going to the Gyn.  I will make that appointment.

Have a great weekend,

karen

Don't Stop Believing

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jim Breitfeller's picture
Replies 2
Last reply 5/11/2012 - 11:18am

This is a great summary of immunotherapy as we know it today. It is somewhat technical but should be in the patient's, caregiver's and Oncologist's library. Knowledge is power. Power to heal ones disease.

Immunotherapy of cancer in 2012 

 

Best regards,

Jimmy B

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Anonymous's picture
Replies 1
Last reply 5/11/2012 - 9:57am
Replies by: NYKaren
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

MICROSCOPIC DESCRIPTION

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

DIAGNOSIS

skin and subcutaneous tissue with scar and persistance of melanoma

NOTE

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

 

"Boots"
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 melanoma.org friend passed away.  You all became important loving friends to my sister, Boots.  

Best wishes to you for a successful & complete recovery!

Amy Buckley

 

file://localhost/Users/amybuckley/Pictures/iPhoto%20Library/Originals/2012/Apr%203,%202012/558320.jpg
 
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 www.melanoma.org.

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. 

 

thanks!!

 

dj

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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!
 

Cheryl
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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