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.

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Haven't seen this article posted on here.  Pretty interesting read on the state of melanoma treatment and the cost associated with in.  Thanks to CherylL for forwarding it to me. 

http://www.ajmc.com/publications/evidence-based-oncology/2013/Sep-Oct-20...

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flvermonter's picture
Replies 3
Last reply 10/26/2013 - 9:28am
Replies by: flvermonter, Tina D, Anonymous

Hello,

My husband's PETscan was no metastic melanoma.  However, he had some chest pains and in the hospital he is.  They found he was anemic and did a endoscopy.  They found a couple of veins that were bleeding and took care of those.  HOWEVER, they found a growth on the samll intestine and did a biopsy.  I had forgotten that the PETScan does not show any growth below 4mm, or that not active.  (I think)

I was so looking forward to no melanoma for awhile, but we may have to handle this again.

 

 

Hugs to all, patients and care givers.

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NancyGM's picture
Replies 4
Last reply 10/26/2013 - 9:12am

After 2 years without a scan, I was fortunate enough to have a PET through my local private hospital's financial assistance program...and I am grateful to be able to spread some hope to melanoma patients at any stage. My heart goes out to all patients and caregivers here always.

NancyGM

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HelenQLD's picture
Replies 6
Last reply 10/26/2013 - 2:46am
Replies by: HelenQLD, JerryfromFauq, POW, Anonymous

My mum starts fotemustine chemo on Friday.  Anyone have any experience with this treatment?

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Very interesting.    Now would this make it safer for me to take IPI (Yervoy) if they would let me keep taking my Gleevec?     Also I am very interested  in how much Curcumin cuts down the colitis if taken when also receiving Ipi treatments.    Sounds like this could make it safer for c-kit melanoma people to receive Ipi.

Researchers Discover Potential New Treatment for Colitis     -     Oct. 23, 2013

http://www.sciencedaily.com/releases/2013/10/131023125606.htm?utm_source...

I'm me, not a statistic. Praying to not be one for years yet.

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bethwkiss's picture
Replies 2
Last reply 10/24/2013 - 10:47pm
Replies by: bethwkiss, casagrayson

I have made one post since coming to this site now im freaking out  on october 2 this year I had surgery to remove melanoma from my upper arm and he took nodes 2 of them he said at my follow up he got it all nodes clean well when he was feeling my arm he found 2 bumps under my skin that where not there when we did surgery so he sent me for a ultrasound this was on the same day as follow up october 17th so I come home friday comes nothing monday comes no call sweet all is good well got the call he needs me in his office again this week on the 24th 2 days away now no call good news the call not good I am lost and very new to this cancer heck just found out in august 19th I had it ans just on the 17th found out I was stage 2b I dont want to freak out on him when I go but is this a reacurence just 2 weeks and 1 day after my surgery ?? 

Lisa Newcomb  

Never give up !!!!!!

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Lori Stoen's picture
Replies 7
Last reply 10/24/2013 - 2:48pm

I want to say that I am so glad I found all of you folks on this board....I may not have written alot but I always had references to look at and so very many stories of hope And With knowledge beyond words also . It is with a heavy  heart that I share the news of my dads passing . Last thursday 10/10/13. He was diagnosed 7/6/13 .with no physical symtoms .... he had 2 treatments of the yervoy, but one thing after the other started happening. ., melanoma stole my dads breath and voice... I pray for an end to this relentless disease. .

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Tina D's picture
Replies 11
Last reply 10/24/2013 - 2:35pm

Had my first scans since starting in the PD1 trial. Great report! Lots of shrinking going on in there. I dont know the percentages yet, since the Dr and radiologist reviewed them today just a couple hours after I had them done.

Also, I am having many changes in my pigmentation. I had vitiligo on my face previously ( it started after interferon a few years ago), and it has increased. I now have vitiligo on hands and arms and numerous halos on my back. I also now have some eyelashes that have turned white! My Dr said this all fits with the good response I am having, and shows the positive immune response.

So, it was a long day, but a good one. I am so very thankful.

Tired, but happy,

Tina

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/24/2013 - 5:19am

What happened to the ability to click on someone's profile and see all their past posts?

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flvermonter's picture
Replies 8
Last reply 10/24/2013 - 1:09am

Hello,

I haven't been on in awhile and very nervous today.  My husband had 5 weeks of 2 treatments a day for lung cancer and melanoma.  After which we discovered his bovine aortic valve needs to now be replaced.  This has been an awful year.  We get the readout tomorrow of the PETscan from last week.  God willing there are no hot spots of melanoma or lung cancer. 

I am staying so positive, and the kids will ask how are you. Of course I say fine, but it requires me to continue to not think of "what ifs".  I guess it because tomorrow we will know, all the anxiety is kicking in for me.  So scared that they will find something.  That would compromise the valve in valve replacement trial procedure for him.

I guess my questions are, does radiation impact the calcification on a heart valve, or has anyone heard of that?  I will be asking the Radiation Onc tomorrow as well, but just curious.  Other question is has anyone experience with NOT taking the medical onc treatment after surgery?  My husband decided not to take it until after this PETscan.  Thinking if no spots, he would not take it. If there are spots, now sure how he can handle treatement with his valve.

Thanks, Mary

 

 

Hugs to all, patients and care givers.

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flydiver's picture
Replies 20
Last reply 10/23/2013 - 9:00pm

I was recently diagnosed with stage III after a biopsy of a golfball sized tumor in the lymph node in my left armpit. It took a while to do the biopsy, PET and CT scan and I had a lot of time to research. No primary tumor could be found. I'm still waiting for the brain MRI.

I know this form is all about encouragement and support, and my oncologist seems awfully rosy, suggesting trials and interferon. I'd like some advice from others that may be or have been in my mindset.

I'm 46 and single with no kids. I own a business and have done well for myself. I have no fear of melanoma. But there are two fears that keep me up at night:

1) what if I spend months or years in aggressive treatments, trials and waiting rooms only to die without really living?
and
2) what if I ignore treatments, sell my business, go have a blast and blow all my money, only to live another 20 years?

I watched my dad work two jobs most of his life, save up for retirement, then die at age 53 of esophagus cancer in only 6 months. I'm not about to let that happen to me.

I know there is no clear answer as to my life expectancy. I'm less concerned about having a long life than in knowing how long that might be. In other words, I'd rather know I had 2 years than not know and live for 10. It may seem premature, but my impulse is to cash it all in, skp the treatments, and go have fun. I could have one he'll of a life for 5 years, but if I'm still around after 10, I may want to kill myself.

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DeniseK's picture
Replies 3
Last reply 10/23/2013 - 8:55pm
Replies by: Tina D, DeniseK, Phil S

Hello All,

Just wondering if anyone else is having issues with their ears.  My right ear won't pop and there's like a fuzz.  I have been congested and don't know why.  When I blow my nose there are spots of blood.  Nothing major just a couple of specs.  I have a call in with my doctor but still waiting to hear.  There is no pain, just annoying and some ringing,  It's been almost 2 months since my last brain procedure which was gamma knife on 16 mets.  I'm also taking mek/braf combo and finished Ipi about a month ago.  

Thanks for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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HelenQLD's picture
Replies 14
Last reply 10/23/2013 - 6:05pm

What is everyone's experience with natural therapies.  Mum is taking vitamin d3, turmeric, graviola and now drinking sour sop tea.  Trying to get her into juicing as well.

 

we are trying everything as her only treatment is chemo due to her autoimmune disease.

 

we are in Australia.

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POW's picture
Replies 3
Last reply 10/23/2013 - 2:47pm
Replies by: Anonymous, Phil S, Linny

charlesthomas is not a melanoma patient or caregiver-- he is selling financial services. I hope MRF starts getting rid of these jerks very soon.

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