Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

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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POW's picture
Replies 2
Last reply 12/14/2012 - 6:38am
Replies by: POW, Janner

My brother was diagnosed with Stage IV melanoma in June 2012. This came out of nowhere and at the time of diagnosis he had mets to the brain, lungs, adrenal gland, intestines, and some lymph nodes. His condition was deteriorating rapidly and several doctors told us that he should get his affairs in order and contact hospice. The prognosis was 6-12 weeks. What a shock!

My brother lives in Tampa and I live in Atlanta. I have a PhD in biochemistry so I'm really good at researching information and talking to medical people. For most of my life I have been our family's resident "medical advisor". When someone in the family has a medical problem, they call me and I find out the facts, the best places for treatment, the important questions to ask and so on and I am comfortable in that role. I am not a physician; I don't try to be a physician. But I do try to separate the wheat from the chaff in terms of treatment options. I'm very good at explaining technical concepts to family members, and I'm good at identifying the pros and the cons associated with each option. My goal is to give my family members the information they need to make the right choices for themselves. 

Whole brain radiation followed by Zelboraf helped my brother a lot. All of his tumors shrank or disappeared. But after 5 months, the tumors are becoming resistant to Zelboraf and are starting to grow again. He asked me to look into possible clinical trials for him. Of course, I am happy to do so. But trying to help my brother find the best clnical trial for him is making me very anxious. I think about it all the time. I lose sleep about it. My anxiety is making me be controlling and demanding and irritable with all the "medical idiots" I have to deal with. And since my brother values peace above all else, my drama is upsetting him. Not good!

Today, I finally figured out why I am getting so upset about this clinical trial business. In the first place, there are no "good" options in clinical trials. The purpose of a Phase I trial is determine the maximum tolerated dose of a drug. In other words, they give the patients higher and higher doses until the patients get so sick they have to stop. Yes, one might be assigned to the lowest dose group, but will the lowest dose kill the cancer? Phase II trials refine the dose tolerability, look more carefully at the side effects, and try to determine if the drug is doing any good at all. Often, they are found to have no significant effect. Not exactly a ringing endorsement for Phase IIs. By the time a drug gets to Phase III trials, they have a pretty good idea about the side effects (in a small group of patients) and some indication that the drug works (in some people). But now you have a control group. The control can be a placebo or the current "standard of care" treatment. However, since there is no decent standard of care treatment for melanoma, if you're assigned to the control group, you're basically screwed. So how do I advise my brother about clinical trials? Should I advise him to take a Phase I or a Phase II because at least he will be getting the drug? Knowing that he's probably going to have some nasty side effects and perhaps no benefit? Or do I advise him to go for a Phase III trial of something that has been shown to be effective, but he might be assigned to the control group, which could be worse than doing nothing? 

And I know my brother. Peaceful, easy, and laid-back is what he wants in life. He hates people fussing over him. He hates slogging back and forth to doctors and hospitals. He would hate to get stuck in a trial where he has to go to the hospital every time he turns around to get infusions, blood draws, scans, etc. Especially when all these trips and all this poking and prodding is NOT necessary for his treatment, but they are necessary to gather data about the drug. And what about cost? Yes, the trials themselves are free. But sometimes you have to get tests to determine if you are elegible for a trial and those are not covered as part of the trial. Am I going to be recommending a clinical trial that ends up costing my brother a lot of money and causing him to stress out about finances during the last months of his life? That's not doing him any favors. 

I know that everyone who thinks about clinical trials wrestles with these issues. And I know that the final decision about which trial to do, if any, is up to my brother. But he trusts me. He values my advice. And he really is very sick and doesn't have much energy to parse all these choices himself. I don't want to make a mistake. I don't want to encourage him in the direction of a trial that is going to make his life worse rather than better. I don't want to feel that I am responsible when he's heaving his guts out as a side effect of the "maximum tolerated dose" of a Phase I drug. I don't want to feel responsible when his condition deteriorates rapidly because he got put in the control arm.

I DON'T LIKE BEING IN THIS POSITION!  But if I want to help my brother in a way that only I can, this is what I must do. And I must try to do it with a smile on my face so he doesn't think that he's causing me upset. UGH! I hate this disease!!

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Replies by: EmmaAustin, skymatt

 

Hello, this is Shallyfree, I have a problem asking the people here, I got a iPhone, and I crash my iPhone 4s a few days ago, some of important message lost, so, I was wondering if I can get back my lost message ? people in the yahoo suggest me trying some paid software:  iPhone sms recovery, it says it can extract iPhone backup and recover deleted iPhone text message. I don’t know it can solve my problem, and it is not free. please make some suggestion and recommend some free app. thanks.

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BillMFl's picture
Replies 3
Last reply 11/20/2012 - 2:16pm

I'm quite sure she did. Not a mean racist bone in her very substantial body.  My guess is my vote and her's helped demolish good old "I can't make up my mind for what I stand for" Romney.  hahaha   Well she probably doesn't come here anymore, but maybe someone can give her the message.

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MeNDave's picture
Replies 7
Last reply 1/11/2013 - 11:57pm

I've never used the off topic forum before - it seems to me looking back that everytime I was on this dang computer I was looking up treatments or clinical trials.  I just wanted to say hello to everybody - I do not recognize many of the people on the BB now, and with losing Dave I am afraid to post.  I mean really, who wants to hear treatment advice from somebody who lost their spouse to the disease?

It's been four months now since he's been gone, and we are picking up the pieces.  The kids and I are adjusting to our new normal and just started  group therapy sponsored by the Gilda's Club (in memory of Gilda Radner).  It seems to help.  Looking back over the last 4 years, it is amazing how much I have changed - and continue to do so.  I am starting school in the spring - something that Dave always told me to do.  Whenever a doc would ask me "do you work in the medical field?" he would answer "no, but she's going back to school!".

This board was such a life line to me during Dave's journey, and I thank God that I found it.  I have found a really good on line young widows group that has helped me tremendously, both with my journey through grief and my kid's.

At any rate, I think of you all often - the people I met through this board will forever hold a place in my heart.

Live, laugh, love - really, it's what life is all about :)

Maria

Don't ever, EVER, give up!

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Shaggy 's picture
Replies 10
Last reply 4/15/2014 - 6:10pm

Its been a while since ive been on here.Times have changed and a lot more people onhere I dont know.ive been on here as a poster and chatter on the odd occasion for the past 10 years or so.Some of my friends are sadly no longer here.I was stage 3 MM back in 1995...here we are in 2012 and im still writing random posts.Coming from England....many of my American friends couldnt understand a word of what i was saying....but it keeps you guessing.If any of my old mates are around....dont be scared of saying hello....any new mates...be very afraid...lol

 

stay lucky people....and let me know if your still alive

 

Shaggy AKA Ian...the mad firefighter from England

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Its been a while since ive been on here.Times have changed and a lot more people onhere I dont know.ive been on here as a poster and chatter on the odd occasion for the past 10 years or so.Some of my friends are sadly no longer here.I was stage 3 MM back in 1995...here we are in 2012 and im still writing random posts.Coming from England....many of my American friends couldnt understand a word of what i was saying....but it keeps you guessing.If any of my old mates are around....dont be scared of saying hello....any new mates...be very afraid...lol

 

stay lucky people....and let me know if your still alive

 

Shaggy AKA Ian...the mad firefighter from England

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Dear All,

My brother is about to get maried. Within two months and by that time he will be having two shots remaining for his recovery course which is (not sure) 48 shots, once weekly. He started his course a year back and now he scheduled his wedding end mid-December, am asking him to postpone as he is negatively effected by all these shots and his health is not good at all suffering from general weakness. Anyways, please help me with the following concerns.

1- Will marieage will effect negatively on his health, I mean will he act as a normal husband?
2- Will this effect on pregnancy chances for his wife as he will take 2 shots in his first two weeks of his honey moon.
3- Will this effect on baby

Another concerns you may advise will be of great help, as I just need to make sure that this will not effect on any one either him or his wife or od willing you're baby.

Thanks a lot for your concern and interest to advise.

Much blesses to all of you.

Karim.

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Nad T's picture
Replies 6
Last reply 10/13/2012 - 5:19pm
Replies by: Nad T, BonnieLea, DonW

DT to Cyn Cyn, come in....*static*

Still at sea?

F1 Austin -- there soon. It's going to be wild on this new beautifully designed track. 6 of us. Jersey June 16, 2013 may be happening.

Sergio Perez in the Sauber Ferrari motored is my driver.

Jackie's 60th I rented a Bell 407 and flew under Golden Gate Bridge. Pilot said are you sure and I said, I can do it... Have pictures.

Thursday is Nate's 10th. We recently added a beautiful bench at South Haven North Beach near pier, and another just went in on a trout stream on Portage Creek.

To my old friends - thank you.

To my old enemies - Peace Pipe.

Uncle Bill, you in a walker yet?

ohhhhhhh...Yawn...

DT

P.s. anyone seen the label maker from Florida? Almost forgot (finding my sign in was a trip). Bored Watcher.

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Liz C's picture
Replies 5
Last reply 1/16/2013 - 12:36am
Replies by: Anonymous, JC, Cooper, Janner

I'm pretty sure there's a Forum for Stage 1 patients, but I don't know where it is. Can someone point me to it?

Thanks,

Liz.

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Liz C's picture
Replies 0

I'm pretty sure there's a Forum for Stage 1 patients, but I don't know where it is. Can someone point me to it?

Thanks,

Liz.

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Billy Mac's picture
Replies 1
Last reply 9/23/2012 - 6:46pm
Replies by: Gale

Hi, I just joined . Check my info. I have stage 3a melanoma, and we are talking about bio chemotherapy. I am complicated, I also have the autoimmune desease Sarcoidosis, this makes interleukin bad if not impossible. Any ideas?
Bill

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I am a preschool teacher and have realized there are not many sun awareness books on the market.  There is a wide variety of everything else (divorce, death, etc.) I have been working on a children's book this year and am to the point of looking for a publisher.  I was hoping to check in and see if anyone has any connection to one.  Definitely not an easy process.

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ETF111's picture
Replies 2
Last reply 9/9/2012 - 4:06am
Replies by: Tina D, Janner

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two places in my lung but only one had uptake). Did an aspiration on my groin node last Thursday and got an oral report that it was melanoma. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of node in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapd weight loss (although, since this news last week, I've lost 5 pounds but probably due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countess sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almsot exactly) with chemo and radition and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

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danmanstercleanse's picture
Replies 1
Last reply 9/6/2012 - 3:49pm
Replies by: ylkay

While looking for affilates for a line of new suppliments we are working with I found this board and I feel it would be irrisponseable to not suggest people look into suppliments and whole foods as a way to deal with their various conditions. you can email me for more information at dan@themastercleanse.com 

 

Otherwise

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What it is:

 

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Red Wine Extract is how the French can eat so many fatty foods, drink wine every day and still stay healthy. The antioxidants present in red wine, proanthocyanidins, provide powerful cellular protection throughout the body. These nutritionally valuable substances are being used more and more to treat deteriorating conditions with great success.

Right now we are offering Younger on our website for  $33.95 Payout is 50% of the retail price (16.95).  For example, sell 24 bottles and receive a payout of $406.80.

 

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Green coffee extract and raspberry ketones have been called miracle fat-burning supplements on the Doctor Oz Show.

Green coffee bean extract has no side effects and a person doesn’t have to change their diet and can still lose weight. Study participants who took the green coffee bean extract consumed 2,400 calories a day, burned 400 calories a day and still lost 10 percent of their total body weight. They lost a total of 16 percent of their body fat and lost about 17 pounds per participant.

We are currently testing a green coffee extract SPRAYwith raspberry ketones! Sprays are nearly 10 times more absorbable than capsules or pills.

It can be taken any time, anywhere--no water needed!

“Green coffee” refers to coffee in its rawest, purest form. The unroasted seeds, or beans, of coffea fruits may slow glucose absorption and stop fat from accumulating all over your body. In a new study, participants who took the supplement did not exercise nor did they change their diet, yet they lost over 10% of their body weight on average.

 

Yours,

Dan 

dan@themastercleanse.com

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/16/2012 - 1:35am
Replies by: lobomerchant, Anonymous

Ive had quite a few moles removed from my body per the doctors request and I'm currently monitoring a few per his request as well. Well one tiny mole that was on my mid back was recently shaved off, grew back, but it grew back in as a cluster of moles. I know it's normal for moles to sometimes grow back when shaved, is this something that I should be concerned about?

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