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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H555's picture
Replies 6
Last reply 5/15/2012 - 7:25am
Replies by: Richard_K, Fen, lhaley, Donna M.

I'm a little embarassed posting this when so many of us are dealing with incredible challenges. I'm stage IV, on Zelboraf for about 5 weeks now. just beginning to move back toward full doses after cutting back to half dose about 3 weeks ago due to a massive skin rash and bumps. My mel is in my lungs and since I've begun Zel I can tell the "masses and nodules" are significantly smaller. scans schedule for 2 weeks from now.


I have a full size truck and we travel to and from Seattle about once a month. it's generally a 4 hour drive. last time i got a mild sunburn on my neck from sun coming thru the drivers window even with SPF 50 sunscreeen. Has anyone gone to a tinted drivers window and how dark does the tinting have to be? Oregon has a law that requires that the window be no darker than 65% of total light transfer. thank you

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benp's picture
Replies 8
Last reply 5/14/2012 - 7:23pm

Does anyone know if there is an optiomal ordering of these two therapies?

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joanic's picture
Replies 3
Last reply 5/14/2012 - 7:50am
Replies by: joanic, triciad, scots

I am currently 6-1/2 months into the Interferon injections (3 times a week) for Melanoma Stage 3b.     One of the many side effects which is driving me absolutely insane is the constant "belching".  Occurs at least 4-6 times per minute.  Feels much more like belching than acid reflux.    Have not found anything that relieves symptoms.   Either it doesn't help at all, or it's too strong and makes me nauseous.    Since I work, I try to "internalize" the belching while at work.   Driving my husband crazy because it's non-stop.   All in all - it's exhausting!   The only time I'm not belching is when I am sleeping!!   Wish I could sleep for the next 4-1/2 months!! :)

Very open to any suggestions from anyone else who has experienced this as well.   Most of the other side effects I am able to handle, but this one is wearing me down quickly!!   Thank you!!   

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AnnaBanana30's picture
Replies 10
Last reply 5/13/2012 - 9:03pm

The title says it all. I am having such a hard time lately with all of this.

My dad is stage IV and is not doing well at all. He did three rounds of Temodar in the fall and it was working pretty well and shrinking his tumors and then all of the sudden it stopped working. His doctor moved him onto Yervoy or IPI...I can't remember how to spell it but I think it's ipilimumab? He's done two rounds and is moving onto his third next week. He gets a scan tomorrow to see if it's working at all but with the way he's been feeling and acting I'm having a hard time hoping that it's working at all! He's in so much pain and can't hold anything down. He has a large tumor under his left arm and it's getting bigger every day. This all just breaks my heart.

I on the other hand had a mole removed in December that came back as melanoma in situ. Had another removed off my back in February that also came back as melanom in situ. Needless to say I am terrified. Has anyone had melanoma in situ? I just had a little boy this past August and I desperately want to be here to watch him grow up. I am so scared that what is happening to my dad will be me in a few years. I'm going to the dermatologist constantly and trying to stay on top of this as much as I can! My husband checks me over a couple of times a week and we are starting to take pictures. I just am so paranoid now about everything. I swear I feel like under my left arm (where my dad's big tumor is) is swollen and I freak out all the time and convince myself that I have a huge tumor just like my dad. Although I'm pretty sure this can't be the case as I only had stage 0.

Does anyone have any advice or any words of wisdom for me? I am so scared. I hate melanoma. I intend to spend the rest of my life spreading the word about this devestating disease.

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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,


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


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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