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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Aloha14's picture
Replies 6
Last reply 1/18/2017 - 5:27pm

It was my first one and I was prepared with my portable CD player and a book. However, the technicians wouldn't even let me listen to music during the resting time before the scan, or read a book. I was told that either one of these would make my brain work too hard.

I figurred I couldn't listen while in the machine. Someone here mentioned they could listen to music. I guess there's variations about instructions or maybe it has to do with the type of PET machine?

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/22/2017 - 2:06pm
Replies by: Anonymous

Has anyone tried this recently and seen success?  I saw a clinical trial recruiting from Seattle but no results?  A presentation at at ASCO by RAbio buying can't access the poster session.  Any help or direction for information would be very much appreciated.  Thank you.

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jenny22's picture
Replies 5
Last reply 1/20/2017 - 10:04pm

Hi Jamie-

I was just looking at your last post, from XMAS day.....(I didnt know prior to that LMD had been confirmed)

Wondering how you are....have you been back to MDA?

As always, thinking about you and hoping you are  ok. 

Let us know how you are.....

xxoo

jenny

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iskitwo's picture
Replies 15
Last reply 1/23/2017 - 12:07am

This will be my first 3 month follow up scans and my first time to do scans at MD Anderson. It would be an understatement to say that I am nervous. Praying I made the right choice with wait and watch and the scans are clear. Does this scan process ever get any easier???

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SOLE's picture
Replies 3
Last reply 1/18/2017 - 5:27pm
Replies by: debwray, SOLE

I'm curious to have your impressions on this endeavor and on the current and available test called gps cancer.

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NancyGM's picture
Replies 14
Last reply 1/18/2017 - 11:46pm

In a couple of a days, I will be at nine years, stage IV NED. It's wierd, but I feel a bit guilty, ( I have lost 5 dear people to cancer in the last few years). I feel like I am bragging when so many here are in the midst of struggling with the mental and physical effects of the disease.....However, I want to offer HOPE. There are long term NED survivors and long term stable disease status survivors of melanoma. Most of us just rarely check in here anymore. 

My daughters grew up, I went back to work as a preschool teacher and am working at my dream school- best job I have ever had. I met a wonderful person who accepts my uncertain health and is a suportive partner. I have SO much to be grateful for, but, I struggle with exhastion, worry over possible symptoms of reccurrence, and the fact that others see me as "cured" when I know I can't ever really use that term.

My history: I had a met to my mediastinum, biopsied in an open thoracotamy, that could not be removed because it accluded my pulmonary artery, so I did 11 rounds, over a year, of Temodar ( temozolamide) and have not done any preventative treatment. The only major change has been following a strict vegan diet. I try to deal with stress well, but, stress is always there in one form or another!

So, I wish ALL of you the very best of luck and health and peace of mind. Every one of you are BRAVE and are my HEROES. Much love, fellow warriors. 

NancyGM

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JoshF's picture
Replies 23
Last reply 1/19/2017 - 12:15pm

So I ended up with full scan on Thursday. Obviously our biggest concern was liver. Unfortunately we never received disk from MDA for comparison. Bottom line from oncologist looking at scan, there's about 50% healthy tissue remaining throughout liver. I saw images and it was disheartening. Just nodules spread throughout liver. On the other hand, some things got a bit smaller and some things bigger based on written report from 12/15 scan. LDH shot up to 2700 and 2 of the 3 LFT's were a bit higher. Not sure what to expect after 1 treatment. Anyway, she decided to move forward with 2nd treatment of Abraxene & Keytruda. I've been with my oncologist for close to 6 years, I know she's concerned. We decided to schedule a brain MRI for Monday. I'm scheduled to begin TIL Jan 31 and supposed to go MDA for screening next week. Now I'm a month out from gamma knife, I need stable brain MRI otherwise a PI override. I'm not wasting more money to travel if MDA won't do that. So I reached out to them to let them know that. The clinical trial "system" is crap. I feel like when I was healthy cancer patient then I'm a hot commodity but get sick and lose that "Olympic patient" status then forget it...not to mention all exclusions for pretreated patients. No wonder only about 5% of patients are selected for trials. Yeah I'm frustrated by all this BS. I feel decent the last couple of days but who knows how I will feel on Jan 31 when TIL would start IF I get in. Need this Abraxene and/or Keytruda to stop progression. Quite honestly, I'm sick of all of this. It's wearing hard on me and my family.

Josh

Let's work for better treatments....for a cure!!!!

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_Paul_'s picture
Replies 18
Last reply 1/16/2017 - 1:43pm

Hey everybody,

Just checking in. My daughter and I and are en-route to LA and should be there tomorrow.  My appointment is for Monday at noon. My daughter is happy about driving the Tesla.

I finaĺy got the relief bracelet that Linny suggested and while it is not 100%, I can feel it working when I use it. I am nauseous every day and the amount of spewing has been greatly reduced by the bracelet. Thanks for the great tip Linny.

I am just making it by with 37.5mcg of fentanyl and 12mg of dilaudid every 4 hours. There is a hard limit at 72mg/day of dilaudid but it's OK if I bank it when I am able to go longer than 4 hours. Right now I have 40 minutes banked which means if I wake up in pain I can take a dose up to 40 minutes early. 

There was no time to obtain all my medical records in advance and in electronic format, so I am showing up with a big Tupper ware tub with all my records for the last 4 years,  discs and all.

Hopefully we will run into Jen and her dad there on Monday.

So far it's been a pretty good road trip.

- Paul

To exist is beyond fantastic.

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mimisadie's picture
Replies 8
Last reply 1/17/2017 - 6:52pm

I just celebrated my 2 year remission from melanoma in October. I noticed a mole on my leg last month that I knew in my heart was melanoma and I was right. My doctor just called me today on a Saturday to tell me Stage 1 Level 3. Will be having surgery within 2 weeks. 

Getting my thoughts together and going to relax and do all I need to do but I am not going to play the victim. I will overcome.

Wasn't in a suport group before but felt I wanted to start doing this now. 

I am going to think of "living fully with cancer"......just wanted to post for the first time. 

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keepthefaith11's picture
Replies 12
Last reply 1/16/2017 - 4:47pm

I am extremely frustrated with my dad's condition. The status of the brain Mets are pretty much stable, a couple of them a bit bigger and some smaller. So there is not much going on as far as disease progression. No additional disease anywhere else in the body.

He had his third seizure in the beginning of November and has never really recovered. Before this last seizure he was doing pretty well. Able to walk around fairly normally. Going to the mall etc. He had his fifth immunotherapy infusion about three weeks after the last seizure. He developed some diarrhea and then was hit with the flu. He was in the hospital for almost 3 weeks primarily laying in bed. He has never recovered from that whole ordeal. He is now at a rehab center.

The fatigue is Extreme and he sleeps off and on all through the day laying in bed. They have to use a lift to put him in the wheelchair to get him out to eat his meals. But even then he is only alert for maybe an hour and then ready to go to sleep again. He is experiencing some pretty severe swelling in both legs as well as his right arm. His speech has not been great since the last seizure either.

I just got back from a two week visit with him and I am so frustrated and confused. Does someone have any ideas or what is going on here? The doctors don't seem to know why he is so tired. They tend to think it's because of the last seizure and don't think it has anything to do with a brain tumors since they are still very small. He is on braf/mek combo since a couple of weeks back and also to different anti-seizure medications and one heart medication. I just don't think that the medications would make him this out of it. This is absolutely horrible. He has no quality of life whatsoever.

I also think there are some brain damage there. Either from the seizures or possibly the tumors affecting things. He definitely understands when you talk to him but seems to have a problem with short term memory. Can anybody please throw out some ideas of what you think might be happening?

Thank you,

Annie

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Anonymous's picture
Replies 2
Last reply 1/14/2017 - 2:21pm
Replies by: Anonymous, debwray

Hello - I have read that targeted therapies can cause more tumors to appear ina short period of time. Does anyone have any personal experience with this?

thank you in advance.

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Michelle820's picture
Replies 3
Last reply 1/13/2017 - 8:29pm

Hello, I was wondering if anyone has any info on acral melanoma. I have had these medium brown colored bands/streaks on both of my thumbs from for a least a few years if not more. I had googled them in the past and it's extremely difficult to find info on possible benign nail conditions that could mimic acral melanoma. Of course since I had my recent WLE (which was an insitu thankfully) I am scared at every little "suspicious" mole etc.  I was always scared or forgot to show the Derm my nails-and I have had this prior to my recent excision. I do have a check up next Tuesday.  

Im just curious if these streaks are "common". I am light skinned with brown hair and have tons of freckles and moles. Wish I could post a picture! Any info would be greatly appreciated. Thank you :)

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CindyCo's picture
Replies 8
Last reply 1/16/2017 - 1:00am

Hi Everyone,

Has anyone participated in or have any thoughts on the tumor testing trials for targeted therapy? There are a couple that I was looking into for my mom, but I haven't heard of many patients on the board going this route.  Would love to learn more about it so that I can schedule a consultation for one or the other.

NCI-MATCH:

https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1

I-PREDICT:

https://clinicaltrials.gov/ct2/show/NCT02534675

 

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fortiz's picture
Replies 5
Last reply 1/14/2017 - 6:57pm

Yesterday my wife received the results from the last TAC. Good news. She's been NED for 3 years and a half on BRAF+MEK clinical trial. She continues full dosage and doing well.

Thank God.

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