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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hopeagain's picture
Replies 3
Last reply 11/12/2013 - 11:34am

Was stage IV with many mets everyone. Ipilimumab extrememly successful taken initially 6 years ago, and received boosts twice along the way but cannot receive again due to a side effect from the IPI. Now mets to liver and need some update on new treatments (not biochemo/IL-2/interferon) [such as anti-PD1, etc...] and if you had any experience with them.

THank you very much,

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Hi,

I had this question a while back: where can I find more about the cost of medical procedures across US and finally I found a website that provides the means to access it.

http://www.pontushealth.com

The site allows sharing of previous experiences about medical procedures, doctors, etc. and get free access to similar information when it is launched early next year. All I needed to do was to fill in a 10 minute survey and provided them with an email address where I'll receive my account and password.

I thought this might interest some of you.

Cheers,

a patient like many others

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MattF's picture
Replies 2
Last reply 10/31/2013 - 12:49pm
Replies by: Michelem, BrianP

I signed into the Ipi vs Interferon Trial at UCLA.

It is random trial of either Interferon High Dose or Yervoy (Ipi) Low Dose.

Just doing admin stuff and tetsts soon....told i will be randomized and start within 3 weeks.

I will keep everyone updated.

Matt

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shonnat's picture
Replies 6
Last reply 10/28/2013 - 5:03pm
Replies by: shonnat, Anonymous, Janner, POW, Mat
My husband was diagnosed in June with stage 1V mel. 3 tumors in the brain and one lymph node in armpit and one in abdomen. 1 brain tumor was 2.5cm and symptomatic and become 3cm within 2 months. The other 2 smaller and stable and have not changed since diagnosis. Was given wbr immediately and then a decision to have gamma knife surgery about 6 weeks later on the large tumor. Once that was done he started on Zelboraf. He has been on Zel for 2 months with no response in the body or brain. Few side effects from taking it though.
About a month after gamma knife his scan showed slight shrinkage but his presenting neurological symptoms are worse than before surgery. He has lost the use of hand and leg on one side of his body They say its the brain swelling and he is on high dose steroids.
They are not helping either. We will wait and see if it can get better. It takes 3 months they say for radiation to fully work.
We are being treated at the BC cancer agency which I believe is very good.

His medical oncologist is surprised that Zel is not showing results. It usually acts fast. Does anyone have experience of it kicking in later. She is waiting another month to see if there are changes then she is thinking of trying Temador as it crosses the BB and he has hardly any issues with mel anywhere else. Has anyone had any success with it for the brain? We could try IPI but maybe later as it doesn't seem to have a high % of success with brain mets, or am I misinformed.

Its very tough as we have had not much success in any area. 

Any suggestions or positive experiences could really help at this point. :idea: 

Thanks
Anna

 

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Replies by: LuckyMan51, awillett1991, Anonymous

So yesterday I received bad news from my oncologist.  I was first diagnosed with a melanoma on my leg in June of 2011.  It was removed with no lymphnode removal and I was great for 2 years.  In June of this year - the melanoma returned in the same spot - this time at a stage IV. I have a tumor on my leg and tiny tumors in my lungs and abdomen.  I was placed on a clinical trial that uses Ipi - Yervoy and Novumulab? PD1.  I just finished the Yervoy and went for scans and there is now a spot on my brain.  The CT scans showed shrinkage in the other tumors - but the spot on the brain could disqualify me from the trial.  If the Neurosurgeon thinks it will help - they are planning some type of radiology to target the spot on my brain.  Has anyone else gone through this?  I need some support.  I felt like I was doing everything right - and now this.  Thanks.

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We are in the process of organizing a market research study amongst Melanoma Stage III and IV patients who are currently taking medication for their melanoma. We are seeking patients and their caregivers/family members.  
 
Time: Open 
 
Location: From home - writing answers to the same 6-7 questions for 30 - 45 minutes a day for 1 week
 
Compensation:  You and your family member/friend/spouse will receive $325 in total for your participation, which can be donated if you so wish. 
 
All responses will be confidential and aggregated and/or without identifying information.
 
Please contact Shanon Sitkin at shanon@clinicalrss.com should you be interested.
 
Thank you,
 
Jan Mallery-Groom
Clinical Research Support Services
+415.896.4645

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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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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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