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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Karin L's picture
Replies 8
Last reply 7/13/2012 - 12:12pm

Hey everyone.  I try to stop in as much as I can but have been dealing with my own battle.  Last I posted I had a great post 1yr IL2 PetCT showing all tumor activity in the liver and lymph nodes gone....amazing.  Only one small area in the L5 S1 spine was lighting up and we took the watch and wait approach for 8wk scans to see if the immune system would continue to kick in.  HUGE MISTAKE.  Didn't make it but to 6wk scans which showed growth.  With 5 days I saw my Onc., Neurosurgeon, and 2 different Radiantion Onc.'s.  My spine is close to collapsing.  The pain became so extremely severe no amount of meds could touch it.  Surgery too risky at the time as well as Cyperknife too risky for fear of permanent paralysis.  All that was left was regular radiation to help with the pain which I completed my 10th treatment today.  The pain levels are FAR tolerable now.  I am scared.  I do not know what is next.  I have an appt. Monday.  We need to scan to see if the disease has indeed gone crazy elsewhere.  It appears there is a small pea size sub q on my arm  hanging out the last month(only outward sign I can find) but it hasn't been tested or anything yet.  Maybe IPI?  Probably not ANTI PD since you can't get in anywhere....I just don' know.  Possibly/probably surgery?  I dunno.  I feel defeated.  Beat to crap.  I stay strong I stay positive but this sucker  punch is getting the best of me today anyway.  Would love to do the Cabozantinib trial....all closed no chance. 

Jimmy B....I listen to every word/advice you give out.  Any ideas this time?  I really only see IPI as a choice and it makes me uber nervous since I had quite a few auto immune problems post IL2. 

We haven't even check the brain so who knows what might be going on there.  We really only get a day at a time with this disease.

Anything you want to give me feedback, good bad or ugly, I will take it. 

Karin

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justlittleoleme's picture
Replies 5
Last reply 7/13/2012 - 12:04pm

Well, because of the high steroids due to reaction to ipi, he is now dealing with aspergillious. He has fungal balls in the upper lobes of his lungs. He had a heimlich tube put in after the lung collapsed after his bronchoscopy. Week later, two chest tubes after a failed vats procedure. He currently still has two chest tubes. He is on IV anti fungal medicine voriconazole. I administer it at home. Oh yeah, forgot that at Tuesdays doctor appointment, picc line was put in.
Infectious disease doctor said this treatment takes a year. I would love to be dealing with this in a year, not reality for us. I believe we are rounding third base heading for home.
All in all, liver seems to have recovered from the ipi and we are still lowering the steroids. We started at 360mg of methylprednisolone. Now we are at 112mg!
His pain is being managed by mscontin and dilaudid. He sleeps a lot during the day, not so much at night. Pain management doctor is adding a stimulant during the day to try and keep him up during the day so he sleeps at night.
I am no longer working. He can't really be alone. Medications have him pretty woozy.
We seem to have moved from living to waiting to die. Not a good place to be.

We don't know how strong we are until being strong is the only choice we have.

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Nicky's picture
Replies 6
Last reply 7/13/2012 - 12:00pm

Hi everyone, I thought I would check in and let you all know that I'm still alive and kicking melanoma.

I had an annual checkup at the melanoma outpatients here in Brisbane at the Princess Alexandra Hospital this week and I'm pleased to say I am still NED.  The hospital doctor who I haven't seen before was having a hard time reading my history because I've had so many bouts of melanoma and yet here I am nearly my 13th year Stage III and still beating it.

I have updated my patnet under " Nicky" to help anyone struggling with this disease.  I remain positive and even though I am getting on with life, I always remain vigilant.

If anyone is new to this disease, it is not necessarily a death sentence, everyone is different.  There are still people surviving melanoma, they are just getting on with their lives and may not necessarily post.

This board has always been there for me along this journey and I just want to wish you all the best and thank you.

 

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olivermb's picture
Replies 5
Last reply 7/12/2012 - 8:21pm
Replies by: Sia, alicia, AngelaM, olivermb, Janner

Hi Everyone,

I was recently diagnosed with my second in situ (my first was two years ago). Both were caught early. I've had a number of dysplastic nevi removed, and I have many moles (though the biggest ones are probably about 5mm, but those aren't too many).

I'm just kind of flipping out over the diagnosis of a second one. Thankfully, both were caught very early -- characterized as early or evolving. But now, with my moles and atypical ones, I'm feeling like a walking time bomb.

I've read the stats that about 8-12% develop second primaries, but does anyone know the likelihood of developing 3 or more if you've already developed 2?

I'm trying to come to grips by recognizing that I have a full-body photo done, that I'll be seeing my derm even more regularly now (3 months), and that I do monthly self checks. But somehow, this isn't reassuring enough for me right now. Scared, scared, scared.

I feel bad about even expressing these fears given the things people on here have gone and are going through. You have my greatest admiration.

Any thoughts are welcome.

My best,

Mary

age 47

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Anonymous's picture
Replies 3
Last reply 7/12/2012 - 8:00pm
Replies by: Sia, imissmommy2003, Janner

Say you have been messing with it for months, then you finally get it removed, could it look worse under microscope because of that picking? 

I would also like to ask, can I reverse my sun damage?  I have read that smokers if they stop smoking their lungs can heal.  Can your skin heal?  If I don't get any more sunburns does that mean my risk of another melanoma is low again?  Or does it take a while for past behavior to catch up?  I had multiple, blistering burns as a child. 

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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

Hello,

 

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?

 

Thanks,

Allen

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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!

http://journalstar.upickem.net/engine/Details.aspx?p=V&c=58823&s=2119511...

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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.

http://www.anzmtg.org/content.aspx?page=currtrials

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

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