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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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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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2012 - 8:47pm
Replies by: Anonymous, LynnLuc, Charlie S

Will there ever be an alternative to Interferon? Are we even close?

This wait and watch is killing me, but Interferon does not have the best outcome.

I am not up to date on the recent advances. Are there any?

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sjl's picture
Replies 6
Last reply 9/26/2012 - 3:45pm
Replies by: MeNDave, sjl, shellebrownies

My husband was diagnosed with mucosal melanoma in the nasal cavity in April.  He had two surgeries on the nose (clear margins the second time around)  and lymph nodes,, one of which tested postive, removed.  Because of another developement with a primary lung cancer that they wanted to address first, treatment was delayed.  While waiting for treatment for the lung cancer, his melanoma marched on.  He woke up one morning and, literally, overnight, a large tumor and several pea sized tumors had popped up along the neck near the incision for the lymph node removal.  A biopsy was done and confirmed to be melanoma as suspected.  Meanwhile, everything kept growing every single day while we waited for a phone call telling us when to go back for another scan before they decided what to do.  I won't get in to all the communication problems between the doctors involved but in a matter of days the things were huge and pain developed.  It took some doing on my part but they finally told me to take him to the ER two hours away, and yes, he is being treated by a melanoma specialist at a major cancer center.  The largest tumor was pressing on a nerve, causing pain, pressing on an artery, causing high blood pressure, and close to affecting his breathing and swollowing.  They were going to discharge him after a couple of days and schedule an appointment with the melanoma guy again.  This, after all they had seen!  I got wind that the doctor was leaving the country for a few weeks and insisted that we be seen that day.  He was, and things got started.  My husband is BRAF and CKit negative, not able to tolerate IL2 (at least for now) and because things were moving so fast they decided against Yervoy and went with Carbo/Taxol.  It's working!!  I watched the tumors shrink as fast as they grew!  After one treatment, the main tumor was pretty much gone and they said they don't usually see any kind of response like that.  Has anyone else here seen that kind of a response and if so, how long did it last?  They told us that there was no durable response with the chemo and that they would use it until they could get to something else.  Last week at round 2 of treatment, they said it might just work in him and that they may not do anymore after he's finished the chemo - just keep scanning and watch.  He goes for another treatment next week and will be restaged at that time.  As you can imagine, we are pretty happy right now but I know how fast things can change.  He's not elligible for a clinical trial because of the lung cancer.  I know the options are slim, but what should I be asking the doctors and what should I be looking for?  I've learned a lot from skimming this board.  The PA told me I ask a lot of questions and that most people don't do that.  Really????  With something like this????  I like to be informed - the good, the bad, the ugly.  "I don't know" is an acceptable answer too, but I want to know as much as I can about this, realizing that there are no guarantees, everyone is different, and so on.  I'd love to hear from others who have tried carbo/taxol.

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PeterO's picture
Replies 4
Last reply 9/20/2012 - 6:11am
Replies by: Amanda, POW, PeterO, lhaley

It took time, prayer, research, and conversation with my medical team, but I've now settled on a plan for how to treat my stage IV disease. Here are my blog posts on how I arrived at my decision: www.theogler.blogpost.com.

www.theogler.blogspot.com

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Anonymous's picture
Replies 9
Last reply 8/7/2014 - 6:58am
Replies by: Anonymous, Crystal0702, Charlie S, LynnLuc, Janner

I was recently diagnosed with melanoma in situ.  I want to ask the MD the right questions.  What things should I be asking?

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Mandi0280's picture
Replies 6
Last reply 9/19/2012 - 1:49pm

Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything. 3 months ago we go in to get routine CAT scan results from dr and he says everythig looks good & that there are 2 lymph nodes in the neck showing up as "larger than normal" but they have been there ever since the very first PET scan that my husband had but do not "light up" on the scan as being cancer.  (we were never told until this last visit that those lymph nodes were "larger than normal") So he says that any person can have "larger than normal" lymph nodes that mean nothing ...referring to anyone that has never even been diagnosed with melanoma. So he says that we will just keep a check on them to make sure they do not grow. I looked at the report and the nodes show "stable" .Has anyone ever herd of this before? Should I be asking for something more than just keeping a check on them? I like to think they are nothing since they don't light up on a PET but it makes me nervous. We go back for 3 months scans this Friday.

Thanks,

Mandi

Mandi

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