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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mygirlmaddy's picture
Replies 3
Last reply 10/25/2011 - 6:41am
Replies by: Donna M., CLPrice31, MariaH

A friend posted this on her facebook.  I don't know a group that it pertains to more than this one.  I hope it inspires even one of you to go live life while you can, instead of waiting to see what the scan, doctor, bloodtest, etc might say.

 

"We seem to be going through a period of nostalgia, and everyone seems to think yesterday was better than today. I don't think it was, and I would advise you not to wait ten years before admitting today was great. If you're hung up on nostalgia, pretend today is yesterday and just go out and have one hell of a time."~Art Buchwald 

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Lisa13's picture
Replies 3
Last reply 10/24/2011 - 1:29pm
Replies by: j.m.l., Lisa13, Terra

For the past few days, I've had congestion and left ear was a bit congested.  Still have these symptoms, but noticed today my left side of neck muscle and face is a little puffy.  I felt my neck and don't have any lumps or bumps, you can just feel puffiness down the neck and notice the left side seems more swollen then the right.   I have no other symptoms. Do you think this is a gland problem from the yervoy??  I have placed a call to my clinical trial nurse to ask for sure.  I know thyroid swelling can happen in the front, but I've seen pictures of it occuring on the sides of neck as well.

Many impossible things have been accomplished for those who refuse to quit

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jmmm's picture
Replies 18
Last reply 10/26/2011 - 8:04pm

My husband is 38 and stage 4 since Jan. 11.  He had Yervoy--May-July of this year with minimal side effects (rash, stomach rumblings, and lethargy).  It got rid of 2 tumors.  Since then he has 2 more develop--one in his abdomin and 1 in his neck.  The doctor is on a wait an see.  His 8 week follow up from last scans is scheduled for tomorrow. 

A week ago he started noticed weird symptoms--light headedness and clumsiness.  I called the Dr. Mon. and Tues.  to try to get him in before his scheduled scans on the 25th (tomorrow)   Finally heard back on Wed.--they wanted to schedule a brain MRI.  I called Friday--symptoms are getting worse--they told me to come in for the brain MRI (we did it Fri. night and were told if there was something "acute" they would keep him--they sent him on his way), and keep the Tues. appointment.  Now, he has some left sided weakness--he can still walk and do things but has to work a lot harder to use his left side, has slept 20+ hours a day since Friday, feels light headed, some headaches (treated with tylenol/motrin), says he just feels weird (drunk-like was his term).  Obviously we're concerned about brain tumors, but we're wondering if perhaps the tumor on his neck is pressing down on a blood vessel to his brain??  It's growing.  I asked the office, and they seemed totally unconcerned.  We've just switched doctors to a melanoma specialist and are really concerned and not sure why the office doesn't seem more concerned about the symptoms I'm describing to them. 

I know he has an appointment for tomorrow for 2 months scheduled CT scans, blood work, etc.   I'm just scared and confused and not sure what to do.  I don't want to over-react and head to the ER, but....  Any thoughts?

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dearfoam's picture
Replies 15
Last reply 10/27/2011 - 6:37pm

Well, I had a rough week taking care of dad. He is not wanting to cooperate when it comes to doing exercises, drinking fluids, etc, and just gets angry at me when I try to remind him of anything. But he is so forgetful - he has to have someone say it's time for meds or whatever - and I just had to decide to only remind about things ONE time, and if he doesn't want to participate in his care, then there is really no use letting him argue with me about it. He also was really rude to his physical therapist at the second session Friday, to the point where she had to talk with me about it off to the side. We had to go to a funeral earlier in the week for a very elderly relative, too, so I am sure thinking about mortality, losing independence, etc, adds up, but it is really hard to turn the other cheek or pretend it doesn't hurt when it feels intentionally rude.
Then after getting home from the miserable PT appt, I find my cat, who was DX with feline lymphoma cancer about 4 weeks ago, is not breathing right. The vet office is closing, and it sounds like she has forced exhalations, maybe fluid in the lungs from chest tumors, but who knows. Has not eaten well for a few days, but has eaten some. Mostly super pureed baby food meats, but I notice she isn't drinking much water anymore (had been on prednisone in addition to other chemo).
Hubby and I go out for some "us" time that evening, and when we come home the poor cat is even worse. She could walk and sat with us a few minutes on the couch, but fell out of my arms when I took her to her bed - she seemed really tired. I dreamt that night she has died, then woke early to take her to vet on Sat AM. She was laying oddly, with her legs out in every direction. Doesn't fuss to be laid in the carrier.
Once in waiting room, I wrapped her in a towel to keep her warm and try to comfort her, pet her, tell nice stories about her. DR isn't there yet so we are all just waiting. Some other folks talk with me, seeing how pathetic she is. They probably saw what I didn't; she was dying right there. She convulsed three times in a span of about 15 minutes, pawing rapidly and locking her arms straight out, panicked looking, unable to support her head. then breathing gradually stopped and her eyes glazed over, pupils enlarged. I couldn't believe it happened so abruptly. I took her to the exam room with an employee to check her heart, about the time DR came in to confirm.
At the time it happened so quickly, I didn't have time to process it al, but the rest of the day and today have been hard, remembering her throws of death, her sad meow, the lolling head, glazed eyes and even the tongue stuck out, the smell of elimination and death.
I realize this isn't a person, you all have seen worse, but I only hope I learned all this so I will handle the inevitable better down the road. I hope I can forget the bad days with dad, I can just feel compassion and sorrow and not feel like I am a source of resentment or whatever makes him so bitter. I feel like I am the scapegoat for him being mad he has cancer. He doesn't talk about feelings at all, he refuses, he doesn't need to, he just acts ugly to me. I wish so bad that bitterness would go away and we could have some more happy moments in this terrible part of life. It is really hard caring for someone who seems to reject you.

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chet's picture
Replies 12
Last reply 10/25/2011 - 9:29pm

 

Hello everyone! It's been a while since I've last posted. Not too much has been going on in my life, just trying to live and appreciate each day given to me. Okay, so here's my update.

I finished all 4 infusions of Yervoy this summer, my last one being either in late July or early August. My oncologist ordered me a PET Scan and had me tested to see if I was BRAF+ the first week of September because my health insurance was about to end on September 25 and she wanted to get all that work in before it expired. Turns out that I am not B-RAF + (DAMN!). The PET Scan was done way prematurely, only a month after the last infusion, so I'm not too focused on the results I got back from it because I know it can take up to 6 months to get an immune response from Yervoy. I was really confused on how to feel after the 4th infusion because I could feel the tumor above my left clavicle getting bigger and bigger. I kept in mind that a lot of you said the tumors will inflame before it gets better. Well it seems that I'm a late responder, a few weeks ago I started to finally feel the tumor go down drastically and it still seems to be shrinking a lot and getting softer, thank God! I hope it's still continuing to work.

 
Now that I no longer have health insurance since I turned 26 years-old last month, my oncologist gave me a list of 4 different places to enter a clinical trial.  
 
Osman,
Brendan D. Curti, MD -- (his title says GU but he does melanoma too)
Director, Genitourinary Oncology Research and Biotherapy Clinical Program
Portland Providence Medical Center
Portland, OR
 
Dr. Gregory Daniels
Cancer Immune Therapy Working Group
University of California San Diego
Rebecca and John Moores Cancer Center
La Jolla, CA
 
Michael Wong, MD, PH.D
University of Southern California
Health Sciences Campus
Los Angelas, CA
 
Dr. Rene Gonzales
Melanoma Program -- University of Colorado
Aurora, CO
I need help in choosing which one is best for me to go to and ASAP. Supposedly she tells me that they're the best of the best. So far, the only treatmeants I've done are IL-2 at the beginning of this year and the Yervoy(IPI) this summer. I'm kind of freaking out because I just read a post where you guys were saying that they only provide the drug and all other expenses are on your own. I'm just wondering if any of this is even possible because I would have to be flying out from Texas everytime and I'm not even sure how frequent, but I imagine a lot. Yikes. Sometimes I want to be mad at the universe for giving me this horrible disease so young, but I have faith that I'm going to be okay and that things could always be worse. I will find a way. We will find a way. Linda, I'm praying for you to have a speedy recovery! And CarolB, I hope you're doing fine. Anyway, any advice/input is greatly appreciated as always. The strength and warrior attitude you guys have is inspiring and I continue to hold on to the hope that we will find a cure. Always praying for everyone here and those fighting this cancer!

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Bubbles's picture
Replies 11
Last reply 10/26/2011 - 1:58pm

 

From my blog:

Much to the dismay of close friends and Brent...I started following the happenings on the Melanoma Research Foundation board a few months ago. They were dismayed because I would get upset when I read skewed or slightly mis-informed data posted there and because of my tears when reading so many sad stories of families and patients dealing with the ravages of melanoma. Stories that make my small adversities seem like a walk in the park. Brent was rather undone, telling me...."I've followed those boards for years and I was thankful you didn't because I didn't want them to hurt you!" But, I kept reading. People on the boards would argue among themselves over who spoke badly to whom....over who understood this or that better...or become completely unglued if anyone said anything critical of a particular treatment. Part of me understood this. People this close to death and functioning at this level of desperation are very sensitive. On the other hand, part of me wanted to say..."Folks! Really???? This is how you choose to spend your time? Of which we haven't much???? ALL the treatments suck! Seriously?!" Only in Sept did I actually join, so as to answer a couple of questions from folks asking about anti-PD1. As a lab rat in a closed environment, it would have been nice to know a bit more about what I was getting into when I started my trial. But, pharma and hospital regulations and general pussy footing, makes finding out anything about what is really going on in studies very difficult.

(By the way....did you know that there is a site that you can check to see what is happening with the research and the marketing of drugs? It is technically an investment site. BOLT International.com. There you can get a few tidbits of intel for free, but for several thousand dollars you can (supposedly) purchase more details about how the research is going...so you can invest your dollars to their greatest effect. WOW! But...I digress...)

So...I answered a few questions...and maybe I was of some help. I think I made at least one friend. But....sure enough...today....when trying to help answer one person...another slammed me in the most bitter and sarcastic manner..."I...love it when the people who progressed to stage IV come on and tell us why they didn't do interferon..." Nice, huh? People can go on a board like that...while still in stage III and say something like that????? Funny how you never know which statement will cut to the bone. But....I think I'm done. Who needs that?

Shellebrownies, nicmack56, jillneric, NicOz....your stories and your love touched my heart. Jerry from Fauq and Charlie S...you two are characters that made me laugh...and think. Boot2boot...I wish you peace and much luck. Jim Breitfeller...you work very hard. Frank from Australia/formercaregiver....you give calm, competent, accurate advice in a very clear way...most kind of you to keep doing so.

So....WOW...to the good and the bad. The world is filled with some amazing folks. - c 

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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prh126's picture
Replies 17
Last reply 10/26/2011 - 8:44am

I am recently diagnosed with Stage III after completing two surgeries - First: two sentinel nodes were microscopically involved - Second: 13 other nodes, including Cloquet's, were clear  -

CT body scan and MRI brain were clear.

My oncologist at MDA called Friday afternoon - I did not match cell type for his clinical trial - he recommended close observation (every 3 months CT and MRI) with an option to do Interferon immunotherapy.

From what I've read, Interferon is very controversial - limited benefit with potential toxic side effects - does anyone have experience with Interferon?

Thanx and God Bless - 

Paul

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patsy123's picture
Replies 1
Last reply 10/24/2011 - 7:00pm
Replies by: NYKaren

Has anyone been given advice by their doctor on taking vitamin d supplements while on Yervoy? If so, how much to take? I know there are studies on whether vitamin d is helpful in fighting melanoma, but wasn't sure about how much to take, if any, when starting Yervoy.

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patsy123's picture
Replies 10
Last reply 10/26/2011 - 9:58pm

Has anyone been given advice by their doctor on taking vitamin d supplements while on Yervoy? If so, how much to take? I know there are studies on whether vitamin d is helpful in fighting melanoma, but wasn't sure about how much to take, if any, when starting Yervoy.

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kristine's picture
Replies 7
Last reply 10/24/2011 - 10:42pm
Replies by: Gene_S, kristine, Anonymous, Bubbles, nickmac56, NYKaren

My Husband has Stage IV Melanoma.  I was recently contacted by a physician who declares the only way to recover is this "Gerson Therapy".  Does anyone have any advise/knowledge/comments about this?

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heg50heg's picture
Replies 3
Last reply 10/23/2011 - 4:49pm

after being off interferon for 3 months I have found a small lump in my neck just below my chin on the left side. I am currently stage 3 and only took interferon for 3 months as I had to quit the drug because of the side efects. I developed a bad case of pancreatitus and my Dr. decided that interferon would not be a good thing to start back up after I got over that 3 months later. So my question is can melanoma come back that fast and could the lump in my throat be melanoma. It is about the size of my finger that I can feel.

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/23/2011 - 2:38pm
Replies by: Jan in OC, Gene_S, JerryfromFauq, lhaley, Anonymous

Jan,

 

I hope things are going well. I am a little worried that you have not posted for awhile.

 

Anyone heard from Jan?

 

Mary

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Drew N's picture
Replies 7
Last reply 10/26/2011 - 7:52pm

I had my usual checkup with my onco at MDA. He ordered a pelvic/abd CT because he felt like my surgical site... well, let's just say I think he was being overcautious. Even though I really didn't believe anything was wrong, what with good bloodwork and nothing I could feel, I went through the usual gamut of crud. I got my results within 24 hours, though, and everything's fine.

Stage IIIB and almost 3 years out from them pulling a bad node with nothing since. I don't ever feel like I'm 100% safe, but I DO believe that every tomorrow I see gets me closer to the day when a kickass treatment is found. Until then, the curcumin seems to be working.

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Drew N's picture
Replies 0

I had my usual checkup with my onco at MDA. He ordered a pelvic/abd CT because he felt like my surgical site... well, let's just say I think he was being overcautious. Even though I really didn't believe anything was wrong, what with good bloodwork and nothing I could feel, I went through the usual gamut of crud. I got my results within 24 hours, though, and everything's fine.

Stage IIIB and almost 3 years out from them pulling a bad node with nothing since. I don't ever feel like I'm 100% safe, but I DO believe that every tomorrow I see gets me closer to the day when a kickass treatment is found. Until then, the curcumin seems to be working.

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Anonymous's picture
Replies 13
Last reply 7/21/2012 - 1:39pm

My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current  participants:

1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?

2) We have heard so many stories on this site from people who took lnterferon and relapsed during the treatment or shortly after. This is one factor in my daugther choosing not to take it. We haven't come across any similar stories for the ipi trial participants. Since there isn't data available yet on relapse rates, we'd appreciate hearing about relapses during or after ipi treatment, or better yet, hearing about staying NED after treatment.

Thanks for any information you can share with us.

BC

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