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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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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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.

 

Sarah

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Candi13's picture
Replies 11
Last reply 7/18/2012 - 5:39pm

Hi Everyone,

Here is an update on taking the  Merck Pd1 drug since December 2011.

Starting this trial at Stage 4, with tumors on leg, chest & lungs, my "first" set of scans showed NED. My doctor could not find cancer anywhere in my body. Such a miracle for only taking this drug for 12 weeks.

Just got the results of the "second" set of scans, and I continue to be NED.

As I side note, my side effects are occasional joint pain. Also, my thyroid lost some of its function so I now takes meds to supplement my thyroid. The study nurse told me that 8 other patients are also having thyroid issues. Apparently, my side effects  were also reported as side effects by BMS PD1 drug trial results at ASCO .

The study nurse also told me that many patients are showing a response. She commented that the response rate for thisMerck PD1 drug is very impressive.

I hope that this information on my experience with Merck PD1 gives you hope!

Wishing everyone a NED status.

Candi

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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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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
b50
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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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
b50
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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deesbabygirl's picture
Replies 12
Last reply 7/15/2012 - 9:30am

My daughter is 41 just had bisopy done dr called said stage 3 melanoma waiting to see derm and onocologist as a mother I am lost and heart broken but without much knowledge of Melanoma I don't know what to expect or what to research I need advise form someone as to how to deal with this emotional roller coaster!  at first she did not want to tell me then she did we cried but now a few days later I feel she is shutting me out of her life because she is so independent and dosen't want me to worry is this normal? I have told her I will go to the appointments with her but want to go armed with questions what do I need to ask?  thanks to anyone who can enlighten me on this.

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