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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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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mom3girlsFL's picture
Replies 2
Last reply 10/27/2011 - 6:27pm
Replies by: JerryfromFauq, lhaley

...was NEGATIVE!!!!!!!  Doing the happy dance!  What a blessing!  Thanks to all the support and well wishers.  I am officially NED from last years disasters!  Amen!

Gonna "take a break" from here for a while but I'm sure I'll be lurking around a bit.  Take care everyone - (((HUGS))) and prayers always,

Laurie

P.S.

Yes, a girl CAN dream! LOL!!

Do not fear tomorrow, God is already there.

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trishahimm's picture
Replies 11
Last reply 10/27/2011 - 2:52pm

Hi all,

I have posted here a couple times about my dad, I never did a profile. He had a melanoma tumor on the bottom of his foot and throughout his groin, removed in May. They had to wait for healing to start radiation on both areas and were supposed to start interferon after. He had long delays with healing and before radiation was done, he had several recurrences on his foot a month ago, further extending radiation and postponing interferon and postpong a scan out past the 5 month mark. Then within the last 10 days, he got 2 more on his foot, one in his other groin area, armpit and on top of his head. The Onc freaked and rushed to finally get him to a PET scan on Monday evening. We found out yesterday that he has almost 40 mets visible on the PET scan on his liver, spleen, bones, and 20 just in his lungs. They are going to do a different brain scan this week to see what is going on in there, not sure why.

The Dr. said he has maybe 2 months to live if he decides to enjoy what he has left, or that maybe he can get him a year with poor quality of life with some kind of liquid treatment. I am assuming this isn't interferon, because that is normally not stage 4 treatment right? My dad couldn't remember what he said. He is supposed to meet with the Dr tomorrow to make a decision about this, and we are not educated well enough, as Stage 4 came so hard and fast. My head is spinning.

My question, what are the treatments out there and the process at this point? My dad never asked for a second opinion from a melanoma specialist. They said they had a "tumor board" working on the case, and he felt that was enough, eventhough I insisted and pressured him to get a specialist. Now I feel like I just want to make sure we ask all the questions and mention treatments and make sure this dr knows the latest melanoma information. I have seen on the board here Yervoy, ipi,  IL-2, Zelboraf, Vemurafenib,Temodar, Ipilimamub. Which are used for Stage 4 and should be mentioned to the Dr. tomorrow? Any knowledge would be helpful, I am armed with nothing.

I feel like these Drs dragged their feet and postponed treatments and shot radiation on his foot for weeks and weeks while the cancer raced through the rest of him and now I don't trust them at all. Maybe I am trying to feel a sense of control of something, since this melanoma experience has made us all so powerless. Whatever the case, I feel like I need to do SOMETHING that might help, or at least know that the Drs are worth trusting with my father's life.

Thanks,

Trisha

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mombase's picture
Replies 6
Last reply 10/27/2011 - 11:29am

I was so excited to see this information and I wanted to post here in case anyone would like to see this interview:

 

The 700 Club will air an interview of Joe and Terri Fornear about Joe's miraculous healing from cancer on Wednesday, October 26. Since times and channels vary, check your local TV listings here:
http://www.cbn.com/700club/ShowInfo/Schedule/schedule.aspx

I just finished his book and his recovery from melanoma is quite miraculous. Can't wait to see it!

Cristy, Stage IV

Getter done!

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FormerCaregiver's picture
Replies 1
Last reply 10/27/2011 - 11:11am
Replies by: NYKaren

Undoubtedly, the process of having regular scans is something that can make one very
anxious. Here is a simple relaxation technique that might make it easier to cope with
scan anxiety (or scanxiety):
http://www.bbc.co.uk/health/emotional_health/mental_health/coping_relaxation.shtml

This basic method of meditation could also be beneficial:
http://www.bbc.co.uk/health/emotional_health/mental_health/mind_meditation.shtml

Hope this helps.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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ShariC's picture
Replies 10
Last reply 10/27/2011 - 8:57am

Hi All - I just wanted to check in with the board and say that I've finished my first round of bio-chem.  Brutal!  In fact, I'm pretty scared to go back.  I'm scheduled for 4 rounds with surgery to remove a small tumor in between rounds 2 and 3.  I so much appreciate reading this board, but it also scares me so much.  Losing people at 20, brain mets, etc...I just can't believe this road ahead.  Thanks for all the support, advice and kindness.  - Shari IIIb/c in Nebraska

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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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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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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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dearfoam's picture
Replies 13
Last reply 10/26/2011 - 7:13pm

Does anyone have experience with medical alert systems? I had one set up for grandmother years ago, but it was through a regular land line. Dad is still a fall risk, and thought he doesn't need constant supervision, I do worry about when I need to run extended errands and no one is available. He isn't able to live on his own, but this would be for back up if he fall sin the night in the bathroom and I don't wake up to hear it, or if I am at the neighbor's house or store, etc.

We use cell phones only, and have wireless internet. I saw one company that has a "no phone line needed" system (it has it's own ATTcelular based service).

http://www.med-alert.org/medical-alert-systems/No-Phone-Line-Med-Alert.html

Any thoughts? We could get a land line if we had to. All the sitters we have used so far always have their own cell phones, and dad has his own, too. I just don't know if he would really push the help button if it were needed. He tends to deny symptoms/ problems, however obvious they may be. I have tried to establish safety rules too, such as only getting a shower or going for walks when someone is awake and present to listen/ look out for him, etc.

He's been more fatigued on this the 6th round of temodar. He had a few near falls a couple weeks ago (preceding the hospital visit), and still has not been as good as he was a month or two ago, even with extra dechadron (2mg) to reduce his brain edema. I took him to a funeral yesterday, and after standing a combined total of 40 minutes, he was walking very poorly when we left, as in leaning back very awkwardly. He refused to sit down to socialize though there were chairs and pews available right were he was talking before and after the short service. At the time denied feeling off. He was exhausted after the trip, but really did almost nothing else the whole day. Says he "overdid it" yesterday and denies feeling weak or off balance. I just worry he can't tell when he needs to take a break and allow himself not to over do it, and will fall in the house trying to do something he should know better not to do.

Thanks,

DF

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MariaH's picture
Replies 8
Last reply 10/26/2011 - 4:04pm

Dave goes in for his first set of scans tomorrow to see if he is a reponder to IL-2.  We are certainly hoping he is, regardless of the steroids he has been on.  Unfortunately, after they started weaning him off the steroids when his vision returned he lost it again.  Since then his vision comes and goes, seemingly corresponding with the steroids and physical activity.  He has only worked one week since September, and it's driving him crazy.  He was hoping to be able to have some normalcy in between treatments, but I guess that may have been asking too much.

So here's to hoping that he's a responder, and maybe he can take a break for a bit.  Another round of IL-2 is out of the question.  He said (and I support him) that he will not risk his eyesight.

Best wishes to all of you,

Maria

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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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nickmac56's picture
Replies 2
Last reply 10/26/2011 - 11:47am
Replies by: Anonymous, sharmon

My wife's arm/shoulder/neck pain is being managed with steroids and gabapentin for now. She had a nerve conduction test with the neurologist on Monday and they didn't identify any tumors outside the spinal column. Now he wants to do a spinal tap to determine presence of cancer cells in the spinal fluid. Apparently cancer cells swimming in the fluid can affect the nerve roots and cause the pain. Given that she has already had brain tumors and cancer of the lower spinal column (epidural) this would not be a surprise. We meet with our doc to discuss next steps tomorrow. Given that she is already on chemo he may say it doesn't make sense to have the spinal tap because that would be the treatment anyway. She also has a brain MRI Friday, so he might want to wait to decide until we get those results (same day). 

Is a spinal tap as painful as legend says? My wife is getting very weary of pain. Anybody else had experience with cancer showing up in the spinal fluid and can tell me what to expect as it progresses?

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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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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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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