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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delora's picture
Replies 2
Last reply 12/6/2013 - 3:53pm

I had the scans today, PET and Brain MRI.  Originally, I was going to find out the results and talk about a plan on Tuesday, but the Doctor is now going to call me at home tomorrow with the results.  I'm glad to know what I am dealing with it, but hearing those results and waiting on those results......Well, you guys are the only one who understand what that means and feels like.

I appreciate the advice on doctors.  I have an appoint with Dr. Richard White it Charlotte, NC coming up.  I was wondering if anyone would be willing to talk about where they were when they got those results.  Is there anything that could make the situation easier?  I am planning on being alone for the call.  That's my choice.  I have only told one other person that it is happening tomorrow because up until yesterday, we all thought it was going to be Tuesday.

Thanks to all the people in this forum.  Its been a Godsend being able to come to this site.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/7/2013 - 9:31am
Replies by: Anonymous

 

MPIP recently added an anti-spam math question to the longin page. Anybody else notice that the questions seem to get more difficult each time you sign in? smiley

(Oh! Look! They put the emoticon icon back, too!)

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out4air's picture
Replies 1
Last reply 12/16/2013 - 8:38am
Replies by: Gene_S

My husband had been on Z from May through November when it stopped working.  We could tell because we started seeing growth on his scalp and new melanoma spots appearing.  Back to Moffitt/Tampa we went and the recommendation is to go off Z for two weeks to get it out of system before starting Yervoy (ipi).  His first Yervoy transfusion was 12/3 and so far he is doing very well.  Our oncologist said that if he experiences any side effects most likely they won't appear until about 2-4 weeks and we probably won't see any changes for a few weeks either.  She said that in fact sometimes it gets worse before it gets better.  All CT scans, PET scans and MRI's done indicate no internal cancer.  He is diagnosed with Stage III Metatastic Unresectable Scalp Melanoma.

Over the two weeks he was off Z the melanoma grew at a rapid rate on his scalp with many new spots appearing and ones that were already there growing.  My question is if and when the Yervoy begins working and the melanoma growth stops on his head what happens about the current spots that are there now?  Is it safe that they remain there as long as no new growth appears?

Our Oncologist did not indicate to us that we would see the spots compeltely disappear but is that possible?

Has anyone ever had similar experiences?  I would appreciate any information or advice thanks!

We are in it to win it!

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/5/2013 - 9:53pm
Replies by: POW, Anonymous

Hello, I haven't been here in a while and when I tried to search for these people, I realized that searching under peoples previoius posts is no longer possible.  I hope I am not tearing open old wounds by asking if these guys are ok.

Any information would be greatly appreciated.

Thank you.

Insert Generic Inspirational Motto Here

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Richard_K's picture
Replies 5
Last reply 12/7/2013 - 9:31pm

I continue to be on a bit of a rollercoaster with my liver: bilirubin – sometimes high, sometimes normal but today I start my 46th month on Zelboraf.

And a week ago today, I celebrated my birthday so in order to celebrate these two events, I decided to have a colonoscopy.  Results were two small polyps and diverticulitus.  I’ll need to wait two weeks for biopsy results.  (Ha, I’ll even give myself another present in a few weeks with another prostate biopsy to see what that cancer is up to.)

When I first met with the gastroenterologist, he was concerned about my melanoma, Zelboraf, and going ahead with a colonoscopy.  He went ahead and called Dr. Pavlick and her response was something like, “go for it, I expect him [me] to be at my [Dr. Pavlick’s] retirement”. 

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bradcope1's picture
Replies 26
Last reply 12/11/2013 - 3:31am
Replies by: Kim K, Draino, bradcope1, awillett1991, POW, JoshF, Anonymous, Mat, Richard_K

My daughter is stage 4 and currently is enrolled in the phase 4 Zelboraf / IL-2 trial. Last week we were excited to receive confirmation that the single tumor in her lung is shrinking on the Zelboraf arm. After six months of coughing, Z stopped it in 2-3 weeks. We need the collective wisdom of this community now as we are getting cold feet about the IL-2 arm which is scheduled for the week before and the week after Christmas. On this site, I have heard IL-2 referred to as a last resort. I have also seen the 6% of full responders believing in it and the 94% that didn't respond calling the experience a nightmare. Her oncologist says it is the first resort, because of your age and good health. On paper the trial makes sense, as we know that the Zelboraf response is not durable and a combo approach is needed to keep it down. It is our understanding that surgery is an option for her, but her Oncs sold us on going the systemic route from the beginning. Not sure if another reputable melanoma clinic would necessarily agree. Any thoughts on this trial, or other directions with the newer drugs we should consider for the combo treatment? 

Thanks in advance. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/9/2013 - 12:13am
Replies by: hdelancey23, Janet Lee, POW

I have been away from MRF Board. I have been praying for Denise & her family. Anyone know how Denise is doing?

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Anonymous's picture
Anonymous
Replies 9
Last reply 12/4/2013 - 4:19pm
Replies by: Anonymous, Janner, jloz, POW, sbrooks90

I am ok with my diagnosis, its pretty good. I am at a .80mm depth, 2 mitotic rate, and no ulcerations, so I was listed as Stage 1b. I am to have the margins removed later this month (hello paying deductible and copay the last month of a year! haha) BUT, what I dont understand is why my Dr gave me the choice of having a SLN biopsy done, or not....
 

I guess I am thankful for the choice, but what kind of choice is this? Do you do it and know for sure you are clear (told its an 8% or less chance its spread to the lymph nodes) or not do it because its a longer and more expensive procedure with more recovery?  (are they both outpatient - with and without the SLN ? I know without is...)

Then, what if I didnt do it and should have?

Am I even making any sense with this???? I think I am leaning towards having it done just to be safe, but..... UGH

 

Thoughts?

 

ps- I know there are people on here with way worse cases, but I just needed a place to vent where people understood what I am thinking. thanks

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eric w's picture
Replies 15
Last reply 12/5/2013 - 11:28pm

Hi it has been a while since i posted. My wife is 6 months out from completing ipi at UCLA. She just got her scans done and her multiple subcentimeter lung nodules are still stable with one of the nodules showing a 50% decrease. However one brain met was found. They will be doing SRS on it in the next week of two just trying to get thing scheduled. After it is zapped we will reintroduce ipi as she cant do any trials since she does not have measurable disease. My question which i have asked on a few other sites/forums is are there folks out there who have had brain mets that are still here 2, 3, 5 years out. Just looking for something to hang onto here. Thanks

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Replies by: BrianP

Hi Everyone,

I need help with couple of symptoms my husband is experiencing while taking MK3475. First, he does continue to respond to anti PD1, tumors in the lung are almost all gone, the liver has only a few way smaller than when he started, lymph nodes are clear :)

But suddenly he has develop severe gastritis (Docs don't know the reason for it). He has been suffering now for over a month eventhough he has a load of medications to help ease the pain/acidity/nausea/vomitting. At least, now, nausea and vomitting are gone...but the pain when he eats still there. His diet is all home made pure soups which he is tolerating now and liquids. Don't know what else to do to help him, any suggestions?

Second problem - he is experiencing low blood pressure (80/58, 78/48) but no dizziness, ligthheadness, etc. He does sleep a lot, he is constantly fatigued! He has gone couple of times for fluids. Tomorrow morning if his pressure continues low, I will take him again for more fluids to see if that helps. No other reason for the low BP!

Suggestions? Anyone on anti PD1 trial experiencing similar symptoms? 

Thank you so much for all your help and support. 

Elenise

 

 

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Jasper's picture
Replies 5
Last reply 12/4/2013 - 5:52am

I'm having the worst anxiety I have ever experienced in my life! I had a "suspicious mole" removed week before last, turned out positive melanoma 1mm (that's all I know for pathology). The mole developed inside a birthmark was there over a year before I started noticing. Now the surgeon can't get me in for a consuot untill nexy Monday the 9th! I mean this thing is still there reproducing and possibly spreading shouldnt I be in surgery STAT? I am a nursing student, it's finals, I'm at my wits end, I'm convinced it's spread, I'm convinced I'll be dead soon and I can't get any answers :(
The doctor who removed the mole went on vacation for a month, just leaving me with this mess. I swear the biopsy site won't heal, it still hurts and is red and has been a week and a half! And It looks like the remaining birthmark is getting darker...and here I sit, hands tied.

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/5/2013 - 7:55pm
Replies by: tgow, FrankG
CasieLV's picture
Replies 2
Last reply 12/14/2013 - 2:27pm
Replies by: arthurjedi007, Janner

What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

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