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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thrashter's picture
Replies 4
Last reply 9/20/2012 - 10:19am

this is the second positive nodule removed in about 90 days. I did opt for wait and see after visiting my oncologist. PET scan in 2 weeks and i am having second thoughts about Interferon. I am now going from stage 3 a to stage 3 b. I feel like i need to do something vs. wait and see. My oncologist seems to not be a fan of interferon. Those of you who have had interferon at my staging would you do it again? Would you do the wait and see?

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Lisa - Aust's picture
Replies 3
Last reply 9/20/2012 - 8:40pm

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Lisa - Aust's picture
Replies 1
Last reply 9/26/2012 - 8:35pm
Replies by: Tina D

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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AllyNTAus's picture
Replies 5
Last reply 9/20/2012 - 9:31pm

I had scans today, 5 months into Dabrafenib, and was really scared as I had discovered a lump in my left armpit last week. I was shaking as I pulled out the scan report and read it, and it said everything was stable!! "No axillary lymphadenopathy" and all other measured lymph nodes either the same size or slightly smaller, all organs including brain clear. So it is a mystery what this lump in my left axilla is, all I can think of is that I've been doing some gym workouts for the last 4 weeks, and maybe there's been some muscle strain leading to some sort of cyst or knot?

Will be seeing my oncologist tomorrow to go over the scans and get him to feel the lump, but I would have thought the radiologist would have reported on it if it was anything suspicious.

Hoping and praying that Dabrafenib keeps on working a bit longer!

Wishing strength and good health to all you warriors out there,
Ally

A bad day's fishing beats a good day's work everytime

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 They posted on FB

 

I now have two Heavenly Fathers, as my earthly father, Bob Lockey, went to be with Jesus last night after his battle with melanoma for over 2 years after his original melanoma over 20 years ago. He was so peaceful and comfortable, for which we are thankful.
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Replies 4
Last reply 9/19/2012 - 4:03pm
Replies by: Anonymous, POW, sjl

I am trying to understand this article. Does this mean they are figuring out a way to make Chemo more effective against melanoma, or does it mean they know why?

http://www.sciencedaily.com/releases/2012/09/120917132351.htm

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gofamily's picture
Replies 2
Last reply 9/19/2012 - 12:19pm
Replies by: awillett1991, POW

My husband has stage 4 melanoma with metastasis to the liver. He was on Zelboraf which worked well until 1 month ago when a new tumor appeared and his liver tumor became active again on the PET scan. Does anyone know of clinical trials specifically for Zelboraf resistance?!

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My husband has stage 4 melanoma with metastasis to the liver. He was on Zelboraf which worked well until 1 month ago when a new tumor appeared and his liver tumor became active again on the PET scan. Does anyone know of clinical trials specifically for Zelboraf resistance?!

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Doug-Pepper's picture
Replies 3
Last reply 10/1/2012 - 1:40pm
Replies by: Doug-Pepper, Mandi0280

We went for Doug's routine appointment with his oncologist for blood work & chest x-ray last Tuesday. A small spot showed up on his left lung, so he was scheduled for a PET scan on Thursday. We were very anxious as you all know. We were to go in Monday morning for the results. His wonderful Dr. called Friday afternoon with clear scan results. So thankful. Next month will be 2 years Ned. My heart breaks for so many on here. I also know that we have to share any good news to give hope to others. Still juicing in the morning & trying to avoid processed food & taking lots of supplements. Prayers going up for others facing this disease... Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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awillett1991's picture
Replies 2
Last reply 9/18/2012 - 10:03pm
Replies by: AllyNTAus, POW

After some very questionable areas on my PET 2 weeks ago, I had a clear CT report yesterday. So after 5 mos on ( and off) Zel, tiny brain met resolved, and cardiac tumor has shrunk to the point it isn't visible on PET but MRI shows it as 7x11. And NOTHING NEW!!

Due to my low lymphs (thanks biochemo) + cardiac met, I am intelligible for HD IL2 or any trials :(. Before Zel fails we are going to try IPI since I've never been on it. Probably next wk - waiting on insurance and I have to wean off 5mg of Prednisone I've been on since April.

Then going back on the Zel, or hoping the new BRAF and MEK drugs will be approved by then. Some lesser side effects would be great. At 5 mos, the hair on my head JUST stopped falling out, it is so thin now - blech.

Would love to know if anyone has tried this or similar. I don't really have a lot of options, yso this seems reasonable to me while I have very little disease.

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POW's picture
Replies 8
Last reply 9/19/2012 - 10:09pm

When my brother was diagnosed with brain mets, he was told not to drive because he could have a stroke or a seizure at any time. Does this mean that he can never drive again? Do other people with brain mets drive? 

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lrkg1234's picture
Replies 3
Last reply 9/22/2012 - 7:45pm
Replies by: lrkg1234, Beth, Phil S

Hi,

My husband Scott was diagnosed a little over a month ago with stage 4 mucosal.  The cancer has spread to the liver, but not big time.  The source (primary) is the esophagus and it's inoperable.  

We found out that he was C-Kit positive and that there was a Dasatinib trial for C-kit patients going on 2 miles from our house at IU methodist in Indy. 

He started taking his pills Friday.  So far no side effects. Has anyone else tried this and how did it go?  How long do you think it takes to do anything?  They will do blood tests soon and then every 2 weeks. Scans will be every 6 weeks. 

He is so uncomfortable sometimes.  He is still working and carrying on as usual, but I know it's exhausting and painful at times. It's so hard to know this misery is going on and that I can't do anything to help.  He doesn't say anything about it but it's not hard to see.  I hope this stuff works!

For now he's just taking hydrocodone for pain and it works fairly well, but he's already getting used to it in just over a week.  Any suggestions??

Thanks, Lisa

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Erinmay22's picture
Replies 15
Last reply 10/3/2012 - 8:05am

Ok - I know this has been discussed some before.   I am set Oct 4th to have surgery done on my small intestine to remove a section that has been showing up on my scans since May as significantly inflammed bowel.  I tried Zelboraf since May.  July scans showed some shrinkage but Sept scans showed it 's back to the same size as it was in May.  

Was given an option to start Ipi and see what happens (since not having many symptoms) but I prefer to just have it cut out!  Can anyone give some details on what it's like, what to expect, etc? 

Thanks,

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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