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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BarbieGirl's picture
Replies 29
Last reply 5/17/2014 - 11:38pm

Diagnosed on my 39th birthday (in October), and had the wide-excision on Dec. 8, 2000.  There was melanoma in-situ found, but the doc got the margins.  (I would have preferred NOT to have had any mel show up in the WLE, but that's the purpose of it!) 

Never, ever, ever did I believe I'd still be alive and kicking today.  I didn't change a thing, other than appreciating life better and not taking things for granted.  I eat what I want, I like a little coffee with my sugar and cream, I'm a coke-a-holic (the kind you drink, not snort!),  I smoke, take lots of meds, get very little exercise----you know, all the BAD things.  Figured if I was gonna die, I was at least gonna enjoy my time left.

The only thing I asked God for.... was to let me live long enough that my grandkids would remember me.  They're now 4-3/4, 5-1/2, 9-1/2 and 11-1/2. (You know how important those halves and quarters are with kids ages!! haha!)  Thank you, God, for allowing me to still be around!

Guess I'll be around to annoy ya'll a bit longer!! =)

*hugz* and love to all who have followed my decade-long journey!!

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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My oncologist is sending me to  Lee Moffitt Cancer Center in Tampa FL, was wondering if anyone has been a patient there, any good Dr. referrals?

Thanks for any info :)

Pennie Mills

embrace the positive

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Rocco's picture
Replies 10
Last reply 12/9/2010 - 2:19pm

Time again for my 3 month CT and MRI this Saturday. I have more than the usual amount of anxiety this go round given the stories in the news and a close friend of ours loosing her battle.   We were blessed last month that my husband's scans (kidney cancer) came back clean.  We're hoping to make it 2 for 2 with mine.  That would be the best Christmas gift of all.   Any of your good vibes or prayers would be welcomed at this time.

-Rocco, Stage IV since Aug 2005

Luke 1:37

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lhaley's picture
Replies 15
Last reply 12/10/2010 - 10:35pm

2 months ago I had surgery for 2 different sites.  Today I had PET/CT scan.  This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm.   Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions. 

We looked back at previous scans and in retrospect it could be seen as a spec in Sept. of 09. I guess the good news is that it's slow growing.  Meanwhile I got back the testing on the tumor that was removed and I am B-raf positive.

My history is a bit unique. For those of you who don't know I was originally diagonsed in 79' with my first recurrance in 06. Since then I've had 1 recurrance in breast, 2 in bladder, 1 in lymph node under clavicle, 1 in lymph node in arm and now this. Because my immune system has slowed everything down, my mel specialist is leaning towards immunitherapy at this point to give my system a boost.  I guess dicisions are being made in 3 months.

Sure wish I could have been happy dancing tonight.

Linda

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/12/2011 - 12:54am

Hi All

I am interested in any feedback regarding the GSK BRAF/MEK combo trial. Anyone in this trial??? What are the side effects & how are you managing them?? Thanks so much for your feedback.

http://clinicaltrials.gov/ct2/show/NCT01072175

 

Wishing everyone a lifetime of NED

Jan

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Replies by: Anonymous, molly

I had the CLND from under my left armpit and am recovering well. I HATE the drain tube but getting used to it I guess.  I go back on Dec 13 to get stiches out of WLE and tube out.  The Dr. called yesterday and said no Mel showing up on PET scans and blood work good. One thing he said that there was some scarring on my lungs that could be from pneumonia or other infection. I have never had pneumonia that I know of so that was curious. I have a call to talk with them again to see what could be causing the scarring.  We meet with oncologist next Monday as well to discuss further treatment.

Live life to the fullest and enjoy each day!

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Simmy from Oz -Melbourne's picture
Replies 5
Last reply 12/8/2010 - 4:26am

What side effects have patients been suffering while on Ipi?  I am getting severe stomach (lower stomach) cramps and pains and bloating.  I look like Im pregnant, and can barely stand up straight from the pain.  I was constipated, but have taken plenty of meds for this and am going to the toilet now, but the cramps and bloating isnt easing..  it is sooo painful, dont think ive ever experienced such agony :-(   Has anyone else had this problem?  Thanks guys x

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jolainajo's picture
Replies 2
Last reply 12/6/2010 - 9:32pm
Replies by: glewis923, MaryMary73

Hi Everyone,,,, I need some posativitiy in my life... Well, to tell you a little about myself, I am Stage IV diagnosed 1 yr ago. I have been through IL-2, didnt work, went to Maryland at NIH in June, went through everything that Kevin has described, and it spread to my brain. In Sept I had stereotactic done and now I see things, and I feel when its coming,, When I say see things, I see this round circle that beats with my heartbeat and is a rainbow. I have talked to my oncologist and they say its from the radiation I had gotten so I try to let it go. Now Im on Ipi and I go for my third infusion on Friday. I just found out on last Thursday that My Medicaid is now being closed and I will have no health insurance, well... they gave me a 500 a month spend down which means that I have to pay for the first 500 and then medicaid will pay, but this is all because I got disablility, at 1000 a month. Im frustrated. I was a Dental Hygenist making good money 2 yrs ago, now Im not working, and have all this stuff going on, and now... Christmas is here. Dont get me wrong... Im glad just to be here, but, Im depressed, Im sad, and I have these stupid tumors that are a constant realization that I have melanoma. Its getting hard to even sit because I have this one tumor on my leg that is HUGE>>>>  it hurts and I have to pretty much live on ibuprofin. I guess I come on this website to see that Im not alone, even though I feel like it, I know that you all are living with this monster too, and Im not going to give up so easily, I guess I need some support,  Im scared, and I think about how I dont want to go, and I think about my kids who are 15 and 11, and my husband, and it all makes me cry, and somedays I do cry, alot. But, I try to not think. I guess this is what it is... right.... well, if you have any words of encouragement I need it, or ways to help that you have done to get through this whole financial crap with insurance, or just to let me know you know. how it is... Please... well.. thank you.. Jolaina

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I have been in touch with a reporter who has written extensively about the Plexxikon/Roche BRAF inhibitor.  The next and final article will focus on people who have taken this drug and had an initial response, but now have developed resistance.

If you fit this criteria and are interested in speaking with a reporter please drop me a note and I will pass your contact information along.

Thanks

 

Tim--MRF

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Doug-Pepper's picture
Replies 26
Last reply 1/22/2011 - 1:40am

Hello! Doug had wle & snb in Nov. I lymph node contained a microscopic amount of melanoma. His scans & mri came back clear. The drs. have suggested interferon or clinical trial of ipilimumab. Doug feels great & is reluctant to go on these drugs that have the potential to make you feel horrible.We have almost decided to go about this in a more natural way.  We are trying to cut out processed foods & sugar. We are eating lots more fruits & veggies & less meat. He is taking a whole foods multi-V, juice festiv, garlic, CO-Q10, tumeric,& omega 3 fish oil. Anyone else out there fighting this awful disease this way with promising results? I had read several books 2 years ago about fighting cancer with nutrition & was very interested. Now I am praying that this is the answer for us. Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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himynameiskevin's picture
Replies 24
Last reply 12/9/2010 - 2:22pm

Well I'm a week into the treatment. It's been a rough week.. bittersweet I guess. Peaks and valleys. But it feels great have just finished my last bag of chemo. So to update those interested...

I got here last monday morning at about 2am and was taken for my money by the taxi driver for 100 dollars for a ride I was told normally cost around 45. (this is from the DC airport to the NIH). He claimed it's his minimum for the Buick he was driving, We disputed and I knew he was taking advantage of me but at 2am after 14 hours of travel and standing in 30 degree weather, I just gave him the cash and headed inside. Disappointing. But I learned a lesson. Yellow cabs with meters from here on out.

After checking in and sleeping few hours, I had a procedure done where they put an IV in my chest. There's two ports that go under my skin, to a tube that runs under my skin up to my collar bone where it goes over and down into my vena cava from what I understand. It'll stay the for almost two months. It's uncomfortable and I don't like it but it's necessary and means no shots for two months. :)

On Tuesday I unfortunately ate something my stomach didn't agree with and started throwing up with a fever before I ever started my first bag of chemo. This wasn't any fun because the main side effects of this chemo are nausea and vomiting so that just added to it. I did that chemo for two days, continuously hooked up to my IV with other fluids to help protect me from it's effects. Then on Thursday I started the other chemo which I had to do once a day for 30 minutes a day for five days. The rest of the day I was unhooked from everything, able to go out on pass and would've felt fantastic if I wasn't dealing with getting over that stomach bug. But it hasn't been to bad, only complaint is a homesickness and the loss of appetite which is coming back to me, slowly but surely.

And here I am now, sitting on my bed, anticipating getting my cells back tomorrow. I should be neutropenic soon I think, Then on Wednesday I start the IL-2 for as long as I can tolerate. We'll see how that goes. And then... and then... on the 15th Brenda (wife of 3 months) will be here to help me recover. :) :) And my parents are going to try and make it up here for a day as well, which will be really good for me but even better for them. I'm their only child and boy are they worried, which is understandable but I know once they see me and the care I'm under, they'll definitely be little more at ease.

Lastly, about an hour a go, the big team of researchers (Drs, fellows, surgeons, lab techs...) doing the protocol made there weekly round here and came to my room for a minute. And Dr Steven Rosenberg was among the group. I didn't know much about the guy other than he's running the show here and has been for quite some time so I looked up a bio of him last night and was extremely impressed to say the least, speechless, I had no idea. (http://ccr.nci.nih.gov/staff/staff.asp?profileid=5757) So I just met him briefly for the first time and shook his hand, I feel I just shook the hand of Gandhi or John Lennon or something. :) Anyway, he appears to know his stuff and a bit of weight has been lifted off my shoulders being under his and all of his teams care.

Well that's all for now. I'm off to chew on ice and saltines. And try to manifest that these cells will know what to do once inside me. ;) I hope all is well with everyone. If the IL-2 doesn't have me too down and out, I'll check in later this week.

Best wishes to everyone. -Kevin

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mzeigler's picture
Replies 8
Last reply 12/7/2010 - 9:10am

Hi,  I am a caregiver to my wife who started with acral melanoma in her right thumb in 2003.  She had the top of her thumb removed

and was fine until 2007.  Then there was a reoccurance happened on the thumb and the whole thumb was removed.  All scans were

negative until 2009 when she showed a small lesion on her lung.  It was removed surgically and melanoma was confirmed.  Next

scans were clean until Aug of 2010.  She had 2 hot spots on her liver and one on the bone of her left arm.  After 2 rounds of il-2 and

no positive results, we got into an ipi trial in Bethleham, Pa.  It's been a week since her first infusion,  with some fatigue.  My

question is during the past week,  she has noticed some aching in her upper right arm which wasn't happening before the ipi started.

Is this related to the ipi drug?  It seems to have happened very suddenly with the starting of the treatments. 

She is 53 years old, an elementary principal.  We have been married 31 years and have 2 sons.  This is my first post.

Mike

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vivian's picture
Replies 8
Last reply 12/7/2010 - 1:53pm
Replies by: vivian, ChristineL, washoegal, Janner, lhaley, Anonymous

Hello All,

I was recently diagnosed with nodular melanoma, currently staged 3a after PET/CT and SNB.  I am awaiting the CLND.  On Thursday I saw my dermatologist for the first time post diagnosis.  He did a simple full body check, without any special scopes, just his eyes.  At no point did he touch my skin (I would really rather he not touch me, but...).  Since my primary melanoma was atypical in that it was not differently colored or asymmetrical, shouldn't he have been more hands on, so to speak?  I am not feeling really confident in him since he did a shaved biopsy twice on this lesion, neither of which came back as melanoma, and by the time the excision was biopsied,  it was deep.  The SNB  was positive for one of two nodes.  The reading I have done on dermatology sites say that a shave biopsy should not be done on a suspected melanoma, so perhaps he wasn't wrong.  However, I am wondering what happens to all of you when you see your derms?  Do they just "look" ?  Since at this point I will be "watching and waiting", I want the watching to be really good.  I would love to hear what happens when you, my colleagues in this fight, visit the dermatologist. 

Thank you and here's hoping everyone is having a wonderful Sunday,                                                                                                                                              Vivivan

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melanomafighter's picture
Replies 16
Last reply 12/14/2010 - 12:15am

I just wanted to let you know those of you who doubt Interferron there is hope.  I had my first scan since my LND and interferron injections and it was negative.  I was told I took well to the interferron and my bloodwork and weight was back to normal...keep in mind I did not complete the year program I only did the high dose and three weeks of the low self injections  Thought I would share the good news with you all  .Good luck to each of you  NED for the first time since diagnosis.

Remember what's important and make everyday count

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Anonymous's picture
Replies 3
Last reply 12/4/2010 - 10:14pm
Replies by: LynnLuc, JohnHen

Looking to see if anyone would know?

If there are trials available how do you find out?

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