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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Nancylee's picture
Replies 9
Last reply 1/3/2013 - 8:45pm
Replies by: Nancylee, KyCyn, BillMFl, Anonymous

A long time ago, possibly in 2005, i wrote kind of my story with my DX from a local lab and mayo clinic. It was always on site, so if i wanted to search information i could read their story. I am actually looking for information from mine. Does anyone know where it is or how i can find it.

Nancy YOUSSEF

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I had surgery on my outer quad/thigh to remove a melanoma in situ about 6 months ago. I'm finally starting to regain feeling on the surface of my skin surrounding the incision site, but now I have a new problem: more widespread numbness.

Whenever I have something (like a laptop) resting on my lap, it's painful all down my leg. Also if I sleep on my side, either one oddly enough, the same pain occurs. I'd call it numbness because that's what I'd assume the pressure would be creating... but I guess it's more of a pain. It is almost like the feeling that happens right before a pins and needles sensation.

The real question here is this: Will this go away? Is it cause for concern? I know it's not uncommon for nerves to be cut in this type of surgery, but I don't know much about nerve regeneration symptoms. Really any info will be a help! Thanks!

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POW's picture
Replies 2
Last reply 12/19/2012 - 11:05am
Replies by: POW, buffcody

My brother is being treated for Stage IV melanoma at the Tampa VA Medical Center. In addition to his Veteran's health benefits, he is also covered by Medicare and by Medicaid. In June, when he was first diagnosed at the VA, the oncologist there suggested that my brother look into clinical trials at Moffitt. He did that, but he was not elegible for any trials because of brain mets. So he started Zelboraf at the VA.

The Zelboraf plus some SRS surgery to the brain worked great. All of his mets were shrinking, dead, or gone. But then one met in his lung started growing. Darn! The VA oncologist said that we could check into clinical trials at Moffitt again (now that the brain mets are gone) or my brother could get ipi at the VA. My brother decided to check into clinical trials again. The appointment is next week.

Meanwhile, my brother got a letter from Medicaid saying that they would not pay for the June Moffitt consultation because it had not been arranged through the proper referral process. We didn't even know that Medicaid was involved in this. I assume that Moffitt does not take Medicare (?) so they billed Medicaid(?). My brother discussed this with his VA oncologist who said that he can not officially refer my brother to Moffitt if any type of appropriate treatment is available at the VA, which it is (ipi). 

So now we have a Catch-22 situation. The VA won't pay for these consultations at Moffitt (the clinical trials may be free, but the consultations are not). Apparently, Moffitt doesn't accept Medicare. Since an "acceptable" (perhaps not the best) treatment is available at the VA, the VA oncologist can't refer my brother to Moffitt. But without an official referral, Medicaid won't pay, either. And my brother lives on his Social Security and has no assets. 

Does anyone have any suggestions? Is there any way to get the VA to either pay for or refer my brother to Moffitt? I suspect we will have to talk to someone at Moffitt about this. But who should we talk to? The Moffitt business office? The Moffitt social worker? Someone else? My brother has enough on his plate right now without worrying about how to pay for a consult, so I'm trying to do as much of this as I can without involving him. I would appreciate  any help I can get.

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gaby's picture
Replies 3
Last reply 6/13/2013 - 3:01pm
Replies by: gaby, wpneuma, POW

Hi! My husband (38 years) was diagnosed with melanoma (ankle) in june 2012(Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so he hada surgery on groin node dissection and lymph node biopsy in the stomach, all clean.

Doctor offered interferon pegylado (new treatment) or wait and watch, my husband started on 29 October with pegylated interferon treatment as adyudante.Treatmentis difficult,has many side effects. Bothafraidthat melanomareturnsand not realize

Please let mehaveyourexperiencewith stageIIIaandpegylatedinterferon.

Iam verysad and depressed. Also wantedto knowif themelanomabringssterility, because we weretrying to haveour first childandwe could notbecausethe doctor dida semen test andreturn resultswerebad.

Thanks.

gaby

 

 

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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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