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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shopgirl's picture
Replies 7
Last reply 7/14/2012 - 9:53am
Replies by: Linny, audgator, shopgirl, lunchlady, Anonymous

Hi!

My mom was told yesterday she had Metastatic Melanoma after have a tumor in her lymph node removed.  The did a head to toe exam and found absolutely NO sign of the primary melanoma.

Can someone tell me what this means?

Also, on the site I read the "stages" of melanoma.  Since this is NOT the primary and was found in her lymph node does this automatically mean it's Stage 4 and does that change her prognosis?

She's going in today for the PET and CT scans, but won't get her MRI until next week after the staples from the tumor surgery are out.

Thank you ahead of time for your answers and support!

-Shopgirl

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chalknpens's picture
Replies 16
Last reply 7/14/2012 - 10:46am
Replies by: chalknpens, Minnesota, Anonymous, Janner, AngelaM

I wrote here earlier this month about a large melanoma site on my back. It is healing now, and I've returned to the dermatologist. He looked me over, found several suspicious sites, used cryosurgery on six of them and biopsied two. One came back as melanoma and one as squamous. Both were sites I'd asked him about during that first visit, and for both he said they looked like skin irritations.

I'll be back to the surgeon for slow Moh's on the squamous, and excision on the melanoma. Is it common to find melanoma in two separate sites?

I am not perfect, but I am enough.

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Snickers60's picture
Replies 13
Last reply 7/13/2012 - 2:44pm

I've read some sad post here about how quickly things can change and turn.   My beloved Warrior Wayne has done so

well on Zel that he was NED in 7 weeks.    Now to my question:   HOW do you live with the OTHER SHOE possibly

dropping all the time ?    Even with this GREAT REPORT on Wayne, I find myself in a HOLDING PATTERN of sorts.   

Wayne has had colon cancer at age 40 and the melanoma on his ear lobe at age 50 and then the mets at age 62, but this

time is so different for some reason.  I cannot seem to get hold of it.  I feel as if I'm unconsciously trying to PREPARE my self

all the time for life without Wayne which seems to be a worst fate than any I can think of, we are so very close and have such

an awesome and very happy and loving marriage of almost 27 years.

 I 

know that GOD has been more than a LITTLE GOOD to us.   Keeping him through so much, but we BOTH seems to have

this "SHOE DROPPING" thing hanging over our head, knowing how quickly things can turn.    I know that being so ill myself

and having struggled with DEPRESSION for decades in this abhorable pain I live in has a lot to do with it, but what do you 

do to make LIFE NORMAL ???     As NORMAL as can be ?    I'd love to hear how you stay above the curve with your

emotions and FEARS !    We are normally very positive people - have great faith, but this time.....this time, something is

just bad wrong......we try to live a happy life, keep the joy, keep up the spirits, be POSITIVE, and we are very light hearted

people laughing at things most people would weep over, but still we have this HANGING OF THE OTHER SHOE over us that 

seems to dampen us in small ways all the time.   Please share how you handle this EMOTIONAL SIDE OF IT if you would.

Thank you for your time and GOD'S BEST BLESSINGS AND HEALING TO ALL OF YOU !

Nancy (devoted wife of 3 X 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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Sherron's picture
Replies 7
Last reply 7/17/2012 - 8:55am

Anyone hear from him?  So many people I dont know anymore.

 

Take Care,

 

Sherron, wife to Jim FOREVER (19 MONTHS OUT NOW)  Still miss him so much.  Each day is a struggle.  Wishing you all well.

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Mymlan's picture
Replies 4
Last reply 7/19/2012 - 9:31am
Replies by: Snickers60, Mymlan, lhaley

So I started off with a Diagnosis of Melanoma Stage II, left ear, sent to M.D. Anderson who gave me a preliminary diagnosis of Atpyical Melanocytic Proliferation on my original slides... They then sent for the remainder of my mole and performed their own biopsies, final diagnosis: a cluster of shallow melanomas without clear margins, most towards the edges of the mole. Surgery is scheduled for Monday and Wednesday. They'll do the excision on Monday and the plastic surgery on Wednesday. 

I am very new at this...what should I make of all this...? Unclear margins? Any input is greatly appreciated! :)

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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Wally's picture
Replies 10
Last reply 7/24/2012 - 10:31am
Replies by: Wally, Lilbrat, Minnesota

I had an in-situ malignant mole removed from my ear in 1006 and this progressed to my RML resulting in a Lobectomy in 4/11. Following this op I experienced continious pain in my chest - rib area. This was ascribed to nerve regeneration so no further action taken. My 4 monthly check-ups were of little consequence with only a Mel blood count taken, which showed low count and an NED dianosis. Of late I have had severe body aches starting at my hips to my legs and also my shoulders and hands. Felt much like arthritis or gout, I suppose. Walking became difficult. My GP brushed this off as old age. My Oncologist was a little more supportive and suggested some X-rays. These have indicate a possible Pleural Effusion.

My question is - are these the typical symptoms of a pleural effusion and what are the chances of this being a malignant effusion?

if the result is possitive (I go for a pet scan on 18/7 to determine the extent of this finding) what is the process. The Oncologist did not discuss any of this with me, sauying lets wait and see what ther outcome is first. I find this difficult as I need to prepare myself for variable possbilities.

Can anyone out there please  help me with answers as it is a long wait to 18/7. Best regards to all and may you all experience speedy recoveries. Wally from RSA.

The sun shines at the dawn of each new day even though it may not always be visible.

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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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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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aldakota22's picture
Replies 9
Last reply 7/13/2012 - 12:21pm
Replies by: H555, Snickers60, Anonymous, Richard_K, awillett1991, gabsound

Today opened up new bottle of Zelboraf.Starting month #10.Drug is working so good that after the June 26 visit with my melanoma specialist dr. at NYU Cancer Center I am able to skip a July visit and actually see D. Pavalik at the end of August.Will have Cat scans done at that time.Pray that the "Z" keeps working.Keep all the warriors and their loved ones in my daily prayers.Still to many sad posts that I just wanted to post a positive post .There is hope and I beleive that the medical researches are closing in on a chronic treatment for this horrible disease.All the best to everyone out there in our fight.  Al

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MeNDave's picture
Replies 23
Last reply 8/5/2012 - 2:08am

I know I haven't been on in awhile, but Dave is not doing well.  The chemo combo has stopped working, and although we got him to his first IPI infusion on Thursday, by Saturday it was apparent that it has spread to his brain.  I called the rescue squad, and he was admiited on Saturday.  The good thing is, he is not in any pain and the tumor is affecting his short term memory, but not his long term... so he knows we are all there with him.  We want to bring him home, but our local hospice does not support IV pain management, and his doctors have said they will keep him as long as they can so they can coordinate the pain control.  Our family is surrounded by a wonderful medical team that sat and cried with us, and so many friends that have helped in so many ways.  Dave has touched so many lives, that I know no matter what, me and the kids will be ok.

I am so thankful for everybody on this board,  Dave is such a fighter, and I ask for prayers for peace for him.  He is a wonderful person... I wish you all had a chance to meet him.

Much love to all of you, and please remember, don't ever give up -

Maria

Don't ever, EVER, give up!

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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 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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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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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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