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 11
Last reply 1/31/2013 - 12:12pm
Replies by: POW, Colleen66, sjl, jcmp, BillMFl, Phil S

 

Last week my brother was taken to the ER with severe speech aphasia, mental confusion, and an inability to walk. His brain tumors were back big time and there was nothing more the doctors could do. So they put him on dexamethazone to relieve the brain swelling and sent him to hospice. We were told to expect 1-2 weeks. However.... the dex has relieved his symptoms considerably. He is awake and alert and keeps wanting to get out of bed alone (his walking is still very unstable so that is a fall hazard). He can talk again and walk (with assistance). He is eating well, and is happy to receive visitors in his hospice room. Amazing!! He is an incredible fighter!!

He is now considered too healthy for hospice and they want to move him out, which puts the family in a bind. He wants to go home, of course, but he still needs continuous nursing care and our family can't afford a 24/7 private duty nurse. We are now trying to find a local nursing home, but so far there are no open beds. And while the dex has relieved his symptoms, he is not getting any cancer treatments so this reprieve is temporary. How long will it be before he has to go back to hospice? A few weeks? A few months? Nobody knows.

Two weeks ago my brother and our whole family were excited and optimistic because he finally started ipi treatments. Maybe--just maybe-- ipi would work for him. Last week we were in despair because he collapsed and his prognosis was dire. Now we're happy that he is so  much better, but also feeling guilty because he badly wants to go home but we can't afford the skilled nursing care he needs. On the other hand, hospice is not a good place for him medically because the complexity of his case is outside of their experience. They specialize in pain management and emotional support; they are not used to handling patients as active as my brother and don't know how to titrate his dexamethazone, for example. So this causes the family concern, too. 

When all this started 6 months ago, I expected a long, slow decline that would eventually end in a quiet and hopefully peaceful passing. I never expected all of these physical and emotional ups and downs. I never anticipated that my brother would not ask anyone for help (like asking his friends for a ride when he couldn't drive) or that he would refuse any outside help that was offered (like at-home hospice offering him a home health aide). That left the ball squarely in my court, which I didn't expect. I didn't appreciate the constant emotional tightrope we have to walk between maintaining a positive mental attitude to encourage his recovery while simultaneously being realistic about his prognosis.  Every time he suffers another medical crisis, I have to ask myself, "Do I take another medical leave from work so I can be there "at the end", or do I hang tough and see if he bounces back once again?" That is an awful dilemma to have to face time and again. 

I suspect that everybody who is dealing with any type of terminal cancer, especially melanoma, goes through these same things. I just wish I had been better prepared for the mental, emotional, and financial upheavals we're going through. Unfortunately, most of the people on the MPIP forum don't want to hear any bad news. They want upbeat, optimistic reports, for which I don't blame them. They also are not all that interested in the caregivers' perspective-- if you aren't walking the walk don't talk the talk. And I understand that, too. And I know that no matter how confused and exhausted I feel, my brother has it much worse. But, oh, what a difficult road this is to travel for those of us who love and care for the patients!!

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BillMFl's picture
Replies 3
Last reply 1/30/2013 - 6:33pm
Replies by: BillMFl, Swanee, jag

This Off Topic BB used to be very very active. It was a combination of patients, caregivers and family members. And it was an anything goes outlet for all of us. We fought, we laughed and often became very close.  It linked people from all over the US and other countries as well.  It became a great place to blow off steam, laugh, curse or cry.  It also got abused by some and that eventually drove away a lot of people.  Perhaps some of you should grasp the opportunity and use this almost empty board to vent and share about things you don't feel comfortable talking about on the main board.  Its here for the taking. Make it yours!

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I had Melanoma Stage 0 in 2012 so am now at higher risk for melanoma I am told. I also have very, very fair skin, blue eyes, etc... My father had all types of skin cancers and was treated and cured. I also have breast cancer stage 1 and there is a strong link between the two so i want to be monitored by a good doctor in the NYC area so i can hopefully catch any other melanomas at stage 0.

I am not sure which hospitals are best at monitoring for melanoma high risk patients in the NYC area. I tried getting in to sloan to see a top doc there for monitoring but apparently i do not qualify becuase i only have stage 0. i don't quite understand this because i would think it is important to catch it early, but i don't seem to be able to find doctors who specialize in melanoma who are willing to monitor stage 0 patients. The dermatologist i am seeing does not seem to be the best and does not really specialize in melanoma. In fact, he indicated that the melanoma stage 0 was nothing on several exams until i requested that it be removed and tested.

So far, i have an appointment at molesafe at NYU which i heard is the only one in the nation, but i was wondering if anyone can recommend a doctor/hospital that is considered good for melanoma monitoring high risk patients in the ny area. Thank you. 

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Muru's picture
Replies 1
Last reply 1/26/2013 - 2:18am
Replies by: Janner

Hi All,

I had melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed. I was under constant observation. Now this has recurred again in my larynx area.

Again doctors are advising the major surgery for this recurrence. They are suggesting that my entire voice box has to be removed. I may undergo a surgery in  a week.

Whether anybody has faced similar Cancer recurrence in this area? If So, what

1. What will be the impact of the surgery in this area.
2. Will I get  my voice .
3. Do we have any other better treatment to make sure that this will never recur again
4. Which is the best hospital in the world to treat Melanoma
5. How can we ensure that this will will never recur again.

I am waiting for the guidanace from you friends.

 

Thanks,

Muru

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KyCyn's picture
Replies 12
Last reply 1/23/2013 - 8:30pm

I haven't visited for a while, but I was so glad to see so many names!  Glad to know all y'all are still kicking :)

 

Happy New Year!  

 

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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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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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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 am getting close to my 2 yr NED mark, I am also helping my 15 year old daughter who has cystic fibrosis put together a dinner/ live auction for the CFF . This is our 12th year and it continues to grow each year. However, we are a small community and many have not only helped my daughter thru her battles, but also helped so much in my melanoma battle and year of interferon.
What we decided was to try to get several items related to melanoma together so that we could make a melanoma basket or have several melanoma items that we could auction of as well, I know it would help raise money while putting that awareness out there as well. We need tshirts, craft items, books, jewelry, stuffed animals or anything that raise money in a live auction! The event us called Megan's wish , in honor of her wish to live long enough for her daddy to walk her down the aisle one day, ( and darn u melanoma, I want to be here to see it too!) the event has a Facebook page or I can answer questions. Please send any items to : Megan's wish, 5989 N County Road 1075 east, Seymour, Indiana 47274.
Thanks for listening, please help spread the word!!!!

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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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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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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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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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