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.

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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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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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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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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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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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yoop's picture
Replies 1
Last reply 9/14/2012 - 12:19pm
Replies by: BonnieLea

That's the lonesome sound of the wind.... kinda like our board here or bored here..ha 

Can't point fingers since I am one and the same... 

Bonnie Lea???  where are thou???? bears eatcha?  sure hope not.. How are you doing? 

Jag?  Et Tu?  Summer wizzed by and I spent a lot of time with my chitlins, boy do they grow up fast.  Is child rearing going well for you? 

Me? you might ponder?  well, I started getting some of my stories published in a U.P. magazine and now I have a newspaper that is going to run one every other week.  Also did a pitch to some of the larger papers in the area...  Hopefully people are finding the graphic, downtrodden and misery in this world mundane and lighten up some.  Ie. election year.... Nasty stuff all around right there...

Started a web page also and it is in its infancy, stop by and be the first to leave a comment.  Well, unless it's nasty, then don't bother.  its www.sirwilho.com

Here's a story I wrote last week.  It's kinda long but there is nothing else to read on this bored anyway so read away. 

Even has a Vet cameo in it for you Jag.

yoop

 

GOING, GOing, gone....

 

by Sirwilho

 

            "See you guys on the other side," "Tell Ma I loved her," "I tried to be good.. really.. I did,"  "Elizabeth, Elizabeth... I'm coming to join ya!,"  all these messages and more escaped me as darkness moved quickly through my consciousness until a dim ray of light was left, only to be quickly snuffed out.  Dramatic?  Yes, sure was.

            "Get yer arse off the ground and quick screwing around," Pappy hollered. 

            "I thought he was dead for sure," my Mom responded. 

            Slowly, darkness was pushed aside by these agitated sounds.  "Whew, I am alive," my brain screamed out. 

            "Ha, Ha, Ha, Ha, you passed out," loving brothers squealed. 

            "Dang, sure wish I was dead again," brain sniveled.

            What made me relive these dark days?   Well, it came from a little event involving my son.  He was on a tour the other day while attending a camp that explored the wonders of animals.  One stop was to a surgical room where the Vet described different sizes of needles used during his surgical procedures.

            "Well Dad, it was like this," my son starts, "The room was small and there were about 25 of us in it.  They were all breathing heavy, thus hogging all the oxygen in the surgery area.  When the oxygen was nearly depleted, there was not enough for me and my brain decided to pass out." 

            "Hmmm," I pondered.  "Jeez, the poor kid has something wrong with him," the boys mom and I agreed.  Then it hit me, "Son, when did you pass out?"  I asked,.  "Right after the Vet talked about the needles," he said.

            "Ah ha!! Yes, of course.  The poor boys head went into overdrive after he thought of needles pushing through flesh and he dropped like a hot rock," I concluded.  Genetics... yep, the poor boy has my pass-out gene.

            The dramatic story today begins with my first pass-out experience and happened when our family joined up with many relatives for a camping adventure.  During our family bonding week it seemed that there was an abundance of time to play by yourself.  Innocently enough, it was during one of these alone times when I started using a pocket knife to carve my name into a very tough Oak tree.  The bark and fibers were like steel and required me to grip the handle firmly and push the tip into the trees layers.  I ended up pushing too hard and the knife closed scissor-like on my knuckles.  The right index finger took the brunt of the slashing and carved a nice slice to the bone.  This event happened in a split second so it took a moment for my mind to register everything.              First....pain; second...bone viewing; third.... blood; fourth....My first journey to the unknown where the lights went out, knees gave way, and I hovered angel like over my crumpled body strewn haphazardly on the forest floor.

            "Look at him!!!!, Now he's crying too," brothers Gump and Bishop sympathetically added. 

            Evidently, passing out makes you a wuss and a perfect target for ridicule.  Ghaaa, the shame of it all...  Days, weeks, and years afterward I heard it over and over... "Remember that time Billy passed out?"  "Dropped like a sack of potatoes he did," "Heh, heh, heh."

            Women have it great in this aspect.  They don't 'pass out', they 'faint'. 

            Terrible, surprising news hits the home front?  Down they go, and it's acceptable.  "Poor thing, give her some air and bring some water," the witnesses soothingly quip. 

            Not fair, not right, and sexist is my assessment on this.  Jeez, my brothers were ready to throw dirt on me then started arguing over who was going to get my bike.

            That wasn't my only time passing out, I have had plenty of episodes since then.  Once, at the age of 10 or so, I had to go to the dentist.  He was a big man with cucumber size fingers and cigarette breath.  The man was also a retired Army dentist who didn't believe in anesthetics.  No Lie.  

            This guy sucked the dentistry insurance allotment up very quickly from our family.  Luckily for him, my brothers and I drank Kool Aid with reckless abandon and the pure sugar loved chewing on our teeth to give us cavities.

            Gallon of water, cup of sugar, simple, yet tasty concoction.  Especially Green.  I'm pretty sure it was called Lemon Lime or something but was referred simply as 'Green,'  in our household.  "Red blows, make Green, dumb arse" my brothers would yell at me. 

            Sorry, back to the dentist.  He was kinda smart in some ways because a treat came after our treatment.  Hmmm... 'Treat-- Treatment'... might be something to that.  Anyway, a long, rubber alligator or spider was promised if we were 'good' while he was drilling for silver.  Not quite sure what his definition of 'good' was, so I would try to lay there without squirming, crying, biting, spitting, etc.  Passing out was categorized as 'bad' in my brain so when the darkness swept over the landscape of consciousness when he drilled into a nerve, I tried to suppress it for fear of not getting my alligator.  Too late.... I was gone hovering again. 

            The dentist seemed to like me this way, I surmised while floating above him and the lifeless me. 

            Tooth smoke from the grinding and drilling finally cleared, so he poked, (revived) me and gave up one of his gators for being 'good'. 

            Sidenote.... this rubber alligator was later used by a still non-confessing brother who put it in with my goldfish and subsequently killed them. 

            Gotta give a blood draw out of my right arm?  Hover Hover...  Needle from new dentist jabbing into my jaw bone?  Darkness, then Hover....  Flu shot?  Quick darkness but no Hover..

            The most recent attack on my conscious came several years ago while I was a supervisor working the night shift at Steelcase. 

            Our workload required us to endure a lot of overtime and I would often help out the crew in the making of desktops used in office furniture.  One of the last steps in this process was to trim off the excess edgebanding by using a custom made, really sharp knife. 

            My head wasn't entirely in the game as I trimmed off the edgebanding, and as a result, the knife slipped, then sliced a nice cut deep into my right thumb. 

            "Ok, that hurt and will bleed, but no biggie," was my thought as I quickly wrapped it with a clean towel and finished trimming the top. 

            It was the end of our shift and almost the whole crew was cleaning while I completed the schedule.  About ten minutes after cutting my thumb, a young lady from our team came over to say good night and quickly saw blood on the floor and the towel wrapping my thumb. 

            "Whadja do?,  Yer bleeding...let me look at how bad it is," she says.  "I'm fine, just a little cut is all," says me.  "Lemme see, just to make sure," she asks again.

            This is the moment where my credibility as a Supervisor and a Man quickly takes its turn Southbound. 

            "OK....See?  Not so bad," I say while slowly unwrapping the towel.  I spoke too soon since when the towel opened, it revealed the now clotting blood bloop over to one side of my digit. 

            I felt IT coming on fast when the wound was exposed.  "Easy Billie, it's just blood, it doesn't hurt," my conscious screams. 

            The pass out Gene was exercising its dominance and started to suck the whole building down into the great abyss.  "Bill!!!  ARE YOU ALL RIGHT?!!" screams the 105 lb. woman. 

            ITS taking me fast and there's no stopping IT while I try to steady myself.  The mouth is now paralyzed and I can't talk, knees then become wiggly. 

            "Just go to sleep," dominant pass-out gene murmurs, "don't try to fight IT, you can't."  The concrete floor is approaching and I am rendered paralyzed-like again. 

            "HELP, HELP!!!!"...the worker screams as she barely cushions my descent to the floor.  "He would have smashed his flippin' head open if I hadn't been here," is what I heard as consciousness comes back. 

            "Just relax Bill, we called the paramedics," the lead man says as I look up to see a circle of heads, like a halo, all straining to get a good look at my passed-outedness.   The concerned look from the crew is quickly replaced by the 'holding back a good laugh look'  as two crew members put my arms around their shoulders and carry/drag me to the break room.

            "I'm fine, really."  was my proclamation to the newly arriving paramedic.  "Nope...Ya gotta go downtown to the hospital and get some stitches and we called a cab to bring you,"  the EMT says.  "What?? A cab?, I can drive," says me. "Nope...Company policy, now get going."

            It's a Saturday night and almost 2:00 A.M. as I sit in the packed E.R. waiting room with quite a cast of characters.  Finally, an hour later, a smiling nurse comes to get me and continues smiling as I sum the nights events leading up to my mishap.  She is still smiling while explaining that she needs to 'numb up the area' with her syringe of numb potion.  "It's gonna hurt too, since its basically skin on bone where I have to inject you," 

            "Go ahead, how much worse can it get?" I say.  The smiling nurse is evidently governed by the Devil as she starts the needle injections into my tender thumb.  "How ya holding up?"

            Hover, Hover, Hover, as I look down on my lifeless body and the smiling nurse. 

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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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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!

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Yours,

Dan 

dan@themastercleanse.com

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Mesothelioma information and hope is an informational resource that offers hope, ways to cope and success stories about mesothelioma and other cancer survivors.For more detail visit: http://mesothelioma-information-and-hope.yolasite.com 

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