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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Anonymous's picture
Replies 7
Last reply 7/12/2012 - 6:45pm
Replies by: Sia, Cindy33, Anonymous, alicia, KMW1011, AngelaM, Janner

Was it the same type of melanoma (superficial spreading if first was, etc)?  Did it grow and change? Was it deeper or more shallow than your first melanoma?

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awg's picture
Replies 5
Last reply 7/12/2012 - 4:45pm



I completed a year of interferon about 2 weeks ago. I am already feeling much better but find myself very short tempered and impatient. I also have some joint pain that can be painful.

I go to work daily but I now want to sped more time at home and I am just not interested in crowds or gathering with friends or family. I am very thankful for my current NED status and want to move on with a full and normal life.

I have given it some thought and I feel that I went for cancer free to cancer treatment and now I am in a middle ground and may need to figure out how to handle this new area.

Just not 100% normal.

Have other experienced this? Any suggestions?




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awillett1991's picture
Replies 8
Last reply 7/12/2012 - 3:46pm

So after being told the Zel is working and 2 mos on 3 pills twice a day I got hit WHAM a week ago with fever, chills, fatigue, hot flashes, sweating, loads of gas and horrid BMs, all over aches, sorta like the flu. Started in the evenings only then after a few days was all day. Dr couldnt find anything other than my liver levels going up but "not too bad" (his words) and took me off Zel for 3 days. Now going 1 wk on 2 pills twice a day then back up to 3, and we'll see how it goes. He doesn't believe in the half dose, but said he has a patient on a higher dose, 1 wk on, 1 wk off, and she is doing great. Anyone heard of this? I envy those of you who got around the side effects somehow!

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deardad's picture
Replies 9
Last reply 7/12/2012 - 1:58pm

Well I spoke to the onc in Sydney today and looks like we are going to Sydney in two weeks for gamma knife on my father's brain mets.

He has I believe 7 mets in the brain and one in a very crucial area near the spine at the base of the brain which will eventually render him unable to move. That was a stress to hear because my dad is terrified more than anything of ending up in such a state.

Long story short, they have accepted him as a candidate which gives us something at least after being sent home with a call from the palliative care nurse. It takes 2 months to work though, with a 80% success rate I'm told.  I didn't even think we'd make the two months, maybe we still wont, but it has given my parents an element of hope and that is so crucial in this journey with cancer. 

I post this knowing that I am still going to loose my dad, there's not turning back now, this cancer is well too advanced.

Can anyone give me some insight on gamma knife? I know it everywhere in the States but its very new to Australia.

My love to Maria and Dave who up against so much at the moment.

Nahmi from Melbourne

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bikerwife's picture
Replies 5
Last reply 7/12/2012 - 1:37am

Lynn started this medicine 4 pills in morning and 4 pills in the afternoon last Monday so we went for his one week checkup Tuesday. Dr. Shirai was totally overwhelmed he said I told you thuis would happen. The tumors on his body that you can see are visible disappearing. The ones that were the size of marbles are size of peas the one that was golf ball size is now marble size. They all are shrinking.

The blood was at 400 has dropped to 279.

The only side effect so far is a small rash in beard and around nose. Dr gave cream for this. Having bllodwork regular at home go back on 18 for another brain scan. Will have ct. Scan of chest and kidney in five weeks and hopefully that will show shrinkage also.

Our dr was so happy he hugged lynns neck and it made us feel so good. Having a caring dr is one of the main things u need in this fight.

May God bless each of you with strength and courage to continue on each and everyday.

What God leads u to he will. Lead you through

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Anonymous's picture
Replies 1
Last reply 7/12/2012 - 1:33am
Replies by: H555

Hi Everyone:

I was just wondering if anyone had experience with radiation and Zelboraf.  Is it possible to have radiation on an external met when taking Zelboraf or is it common practice to stop Zelboraf until the radiation is complete? If the two are not compatible together, Why is this?


Thank you!


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kness's picture
Replies 2
Last reply 7/11/2012 - 5:35pm
Replies by: o2bcheri, Anonymous

I was diagnoised with melanoma in September, right in the middle of planning my wedding. We had to put my wedding on hold to finance my surgeries and several doctor bills. Could you please follow the attached link, read our story and vote for Ness-Banks! Help give us this amazing oppportunity. The contest ends this Sunday - you are able to vote once per day! A BIG PLEASE AND THANK YOU!

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Hi all,
I'll start by saying I hope this finds you as well and content as you can be.

I am looking to connect with others/hear experiences about individuals who have had multiple primary melanomas and/or atypical mole syndrome; and how things have gone for you/what you have done to cope.

My brief history is that my first diagnosis was in 2009 with a stage 1 (.43 breslow/clark level III) on my back.  WLE came back with clean margins, but due to some discomfort on my part with the first dermatologist I saw who made the original diagnosis, I transferred my care to a nationally known private hospital that had melanoma specialists and cutaneous oncologists. There I underwent about 15 more biopsies since August 2009, that came back with things ranging from moderately atypical nevi to another melanoma (in situ). I've had 6 WLE's to manage the more severe atypical and the second primary melanoma. 

In an effort to do more than just "stay out of the sun" to prevent more melanoma, I sought the integration of a naturopath on my healthcare team. I am all for integrated health care and think there are pros and cons to this just like everything else, so I'm not trying to spur a big debate on that topic! What I will say is the naturpath zealously drew what seemed like gallons of my blood and had all these marker tests done. One, a TA-90 glycoprotein that is associated with immune response to melanoma, came back "abnormal."  I went out of my mind researching the sensitivity and specificity of this test, have read everything on PubMed, - even meeting with an oncologist who was involved in research to develop the test. Basically, no one can tell me why it is abnormal or if it being abnormal means anything because the research lines were pretty much dropped in the mid 2000’s.

I hate ambiguity, but am resolved that I will have to suck it up. It is NOT an FDA approved test and the naturopath probably did not have any business ordering it, but here I am with this stupid result.  It has been more than a year now (I stopped seeing the naturpath!) It makes me crazy because data on survival rates for people with positive TA 90 are not good, and the test was developed to detect “occult metastasis.” Like I need any more motivation to worry that my headache is not just a headache and is actually a tumor after having cancer 2X by age 32!

So now, since I have the genetic stuff that goes along with the atypical mole syndrome, two melanomas, this stupid positive TA 90, and many, many strange looking moles, I spin into this place where I can’t help but feel like this is chronic, and will someday take me out.  I’m not trying to be negative (PLEASE no power of positive thinking comments) – I am just honestly scared and it is starting to get the better of me the longer time wears on and the more things I have to have biopsied and re-excised.  I am surrendering to the fact that this is just how life will be, but I thought reaching out to those who have had to deal with multiple primary melanomas and/or atypical mole syndrome would be helpful to get tips on how y’all are coping with an ongoing issue.  Thoughts?

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jessebug99's picture
Replies 1
Last reply 7/11/2012 - 10:15am
Replies by: awillett1991

Was wondering if anyone else has had "non-specific" findings on Pet/Ct.  I had my first set of scans 7 wks ago after being diagnosed with stage 4 (brain tumor removed in March).  The first set of scans showed "minimal" lymphnode involvement.  Actually two nodes under left arm.  Have had one brain MRI since and it was clear.  Started Zelboraf two months ago and just had repeat scans last week.  Showed considerable shrinkage in nodes under arm, but I had my doc check a lump I recently found in my left breast (very painful).  After scans, he called and said the lump lit up "non-specific" and also a small spot on liver.  Said the spot on liver showed on Pet part but not CT part.  Has scheduled me for a CT with contrast for liver and mammogram for breast.  Just wondering because non of this was there 7 weeks ago and seem to be responding to Zelboraf.  Any advice would be appreciated.

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Linny's picture
Replies 2
Last reply 7/9/2012 - 10:47pm
Replies by: Linny, deardad

Hi Nahmi,

I hope that things are still going well for your dad. I just came across a web page called the Australia / New Zealand Melanoma Trials Group and I thought you might find it useful. If you've already seen it, just ignore it.

Stage III, Unknown Primary; 1 positive node in left axilla

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Iowa98's picture
Replies 9
Last reply 7/9/2012 - 10:14pm


New to the board and looking for some guidance.  My father was diagnosed with Stage IV Melanoma in January of this year.  He has been on 4 treatments of Paxil/Carboplatin, but recently his scans showed that the treatment was no longer working.  We are trying to get him into a PD-1 trial, but live in Iowa so the travel to the coasts to participate is difficult.  If we are unable to get inot a PD-1 Trial, we would like to consider Yervoy, but want to understand the risks.  His doctor also recommended Tamazolide, which I'm not thrilled about as it is not very effective.  Any stories/recommendations?  Wish there was a crystal ball.....



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Hi Everyone:

I was just wondering if anyone has had experience with radiation and Zelboraf.  Is it possible to have radiation on an external met when taking Zelboraf or is it common practice to stop Zelboraf until the radiation is complete? If the two are not compatible together, Why is this?


Thank you!

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mrssam1979's picture
Replies 6
Last reply 7/9/2012 - 5:37pm
Replies by: DeborahG, Anonymous, Janner, mrssam1979

Three years ago I was diagnosed with Stage 2 Malignant Melanoma at 29 years old.  I have a family history, I am fair, and I have had many childhood burns.  


Fortunately, I did not have to have chemo/radiation treatment but I do get skin checks twice a year. My doctor does a chest scan and lab work every year.  Do other patients with the same history as I have also have to get these done anually?  What are they looking for with these tests?  And finally, is it necessary to do it for every year? 

I am having two biospies this Wednesday. This will be my 10th and 11th shave biopsy since my original diagnosis.  All but one have come back significant abnormal but not MM.  One of the moles being removed is right below my nipple--very undesirable place to have a shave biopsy! :(

Sometimes I feel in dark about melanoma because I was an army wife and moved frequently, changing dermatologists often and being told various things.


Any help would be appreciated. Thank you.



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Gene_S's picture
Replies 3
Last reply 7/9/2012 - 2:18pm
Possible resources for my fellow warriors that convention medicine is not helping!

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

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rjcravens's picture
Replies 3
Last reply 7/9/2012 - 1:48pm
Replies by: Linny, Richard_K, washoegal

Question to those taking vitaamins and suppllements. I am stage 2B, this is what i am currrently taking:
fish oil
synthroid...due to interferon damage
tumeric 1000mg
biotin 1000mg....trying to get my hair and nails to grow back
calcium with vitD
vit D3
and a multivitamin.
should i be taking all this at once? Also, for those of you that found mass in lungs, what were your symptoms? I have had this annoying cough every take a deep breath that makess my whole lower lung area hurt, now its spread to back aand hurts really bad alongside my spine. I just had pet scan in first week june was negative. It just has me worried.

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