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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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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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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parkmk80's picture
Replies 9
Last reply 10/26/2013 - 10:09pm
Replies by: Janner, parkmk80, Anonymous, SABKLYN

My hubby was diagnosed with melanoma in situ on his back on Monday, Oct, 21, 2013.  They aren't doing the wle until November 4th!  I am defintely freakiing out for him.  Things can grow so fast and you just never know.  Does this seem normal to anyone?!  I am also pissed because they did a shave thinking it was a bcc or dn.  The path report came back with superficial margins so there is clearly  mel cells left behind.  This is beyond terrifying.  We have 2 little girls and a baby on the way.  :(

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robbier's picture
Replies 2
Last reply 10/31/2013 - 1:39pm
Replies by: Michelem, Tina D

Hi:  I was diagnosed 2 years ago with Melanoma Cancer stage 3 A, one Dr says A, the other says B, anyway, last week on Oct 18th I went for my second pet scan of this year, at the present time I am being followed, still in remission, I was the one that opted to not to do chemo, the Dr said remission, and my thought was, you are saying remission, so I will just be followed.  That is what I am doing, even though I go for my test, and follow-up visits, its been hard.  But my beliefs in God, and good suppot has help me.  Mainly my belief in God, and the strength to walk this out.  I go back in Jan of 2014 for a follow up visit, and don't have to do another PET scan for 6 months.  So ya'll here, keep you chin up.  Be encouraged. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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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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POW's picture
Replies 3
Last reply 11/7/2013 - 12:44pm

Shelby Moneer at MRF posted a message today asking us to let him know when we see spam postings. I am moving his message to new thread so it will be easier for everyone to find when needed.

=========== Original Message =====================

 

Hi Linny,

Several MPIPers contact me directly when they notice spam on the bulletin board. I delete these posts immediately, so I'm not sure how or to whom you have reported spam in the past.  Please feel free to let me know if you see something we've missed. You can email me directly at smoneer@melanoma.org. I try my best to look through MPIP posts every day or two for spam but I can't possibly catch all of it. Our new website allows us to delete all of the spam much faster than before and we are continuously working to decrease the amount of spam that gets through. Again, we can't possibly stop all of it, but I assure you, we are trying our best.

Thanks,

Shelby - MRF

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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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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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arthurjedi007's picture
Replies 2
Last reply 11/6/2013 - 4:38pm
Replies by: arthurjedi007, Mat

I've been on Zelboraf for 8 weeks. The full dose 8 pills a day. I just had my first PET scan since starting it and everything is pretty much the same which is lots of cancer in my bones of either the same or a little worse intensity. Anyone else experience this bad Zelboraf result? My doctor is trying to figure out what to do next. According to the biopsy of my t10 vertebrae I'm BRAF V600E. The first PET scan done shortly after starting radiation showed cancer in several bones but nowhere else. They did pallative radiation of that area which the second PET scan showed a 20% shrinkage but growth in other tumors during those 6 weeks that weren't part of the radiation but still the same bones and nowhere else. Then they put me on zelboraf but this 3rd PET scan has no shrinkage and a little growth plus 2 skin cancer spots. My white blood cells were great everywhere except the one for the bones. Now they are less everywhere. The doctor was quite surprised with the PET results because this only happens like 10% of the time he said. Any advice would be appreciated on how to best beat this cancer. I believe they will probably start me on ipilimumab or maybe the trial that combines that with nivolumab since my doctor is part of that. I'm starting to be concerned if their biopsy was correct. Anyone have a biopsy diagnosed melanoma but it is some other type of cancer? As far as Zelboraf symptoms I've had about a dozen or more. The most noticable is the rash from neck to ankles which is slowly going away. Also a couple cancer spots appeared on my skin and PET scan although I've stayed mostly out of the sun and had the uv clothing and stuff on. Not sure what type they are but one is believe to be the squamish. Also my hemroids have starting bleeding way more than ever and may be more to it so getting a colonoscopy. Also my left side hurts quite a lot but nothing showed on the PET/CT scan. Dunno what else to say. I'm quite at a loss expecting the good results the doctor expected only to have gone through all this with no shrinkage.

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Charlie S's picture
Replies 2
Last reply 10/22/2013 - 11:29pm

Stumbled on this research focus today.  It has to do with biomarkers, signaling pathways and the identification and measurement  of a particular protein that MAY early predict and identify those patients who will or will not respond to current BRAF treatment approaches.

Though not definitive by any means; I sure like the focus of the research.

http://www.foxnews.com/health/2013/10/22/newly-discovered-biomarker-can-...

Cheers,

Charlie S

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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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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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bkinman's picture
Replies 5
Last reply 10/31/2013 - 7:59pm

Had burning with urination this morning and then blood on tissue (some blood on tissue Sat night - thought it was due to relations with my husband), classic signs of UTI. Called oncologist and they sent me to Family Dr. for urine test. Second trip to restroom of the day, before going to Dr., there was blood in toilet after urination. Have had multiple UTI's in my 43 years, but never had blood in toilet. Went to Dr and test did show some infection (said small amount) and lots of blood. Of course I took to google and one of the signs of bladder cancer is gross hematuria (visible blood in urine). Only post I could find on here in reference to bladder cancer and symptoms she had blood in urine.

I called Onc and told him what test results were and he told me to take the 500 mg of Cipro for 2 days only and take dificid - due to 3 occurances of cdiff in last 3 months.

Now I am concerend that the mel could be in my bladder. Last scan was August 8th (or 9th, can't remember). It was clear except for spot on liver that was doing better. Nodule in lungs we are watching - no uptake on PET. Spots on spine are stable. 

Any thoughts. I go to Onc tomorrow, but I think it is just for Xgeva shot.  I will ask nurse if a ultrasound or other scan may be in order.

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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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