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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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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Hi everyone,

  The leg infection continues, got on augmentin twice a day for 14 days, then once a day for "months". I asked my surgeon yesterday about doing a wound vac and he said YES!! So it was ordered, I'll have it Tuesdy and will go down to DHMC for the nurses to put it on and for the doc to decide to what level he wants the wound brought to (I dont know the terminology here but the acti vac people said he will decide how long it is to stay on and check me weekly or so). I am so happy as 6 months with open wounds feels like enough!!

 And regarding leg amputation....NOT going to do that....I just feel that 1. my melanoma will return elsewhere, the last new spot is pretty high up on my thigh, and 2, the wound from the amputation isnt going to heal and THAT will kill me. heck, I cant get two small spots on my lower leg to heal. A stump wound to heal? Not going to happen in my estimation. So thats where I stand.

Thank you everone who responded and who may still respond. it definitely helps to read all of this!

Vermont_Donna

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/14/2010 - 1:15pm
Replies by: NancyD, Tim--MRF, jag, King, Nancy, Amy Busby, Anonymous

n/t

Insert Generic Inspirational Motto Here

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Jan in OC's picture
Replies 2
Last reply 12/4/2010 - 11:22pm
Replies by: LynnLuc, Anonymous

Well, We just got back from seeing my husband's dermatologist at UCLA (Dr Roger Lo).  We have noticed in the last month that the spots on the chest have become blacker and the Dr confirmed that they have "become more pronounced".  Could just be that the spots are making more pigment...or...the BRAF has met with resistance.  We have a CT scheduled for 12/17 and visit with Onc on 12/20.  Trying not to worry, but we would like to start researching other options.  Dr said we could maybe do trial with MEK/BRAF combo????  Just looking for input.  Other then IPI, what other options should we consider?

Jan (wife to Dirk, stage IV,  liver/lung mets, on BRAF since Feb)

laughter is the best medicine

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Mfarkas's picture
Replies 3
Last reply 12/4/2010 - 8:43pm
Replies by: nicoli, MichaelFL, Lori C

Hi!  I was diagnosed stage 2c in June 2008, since then have completed one year interferon and had my second baby.  I really have no complaints.  Just went to the oncologist for my 2.5 year check up, had a clean chest x-ray and he told me my labs were great and that I would see him in April or May, "When the snow melts"  I live in Wisconsin!!

So - my question is my LDH levels have been changing.  They were in the 150's all through out treatment, then this past June it was 379 and this past week it was 514.  The normal range goes to 618, somewhere around there.  Do I need to be worried?  Do I trust that he is not concerned and would like to wait until spring to do a scan due to my age - 31.  I would like to continue to move on with my life and watch my two little girls grow and have a happy life along with them - but this has caused me some concern.

Any ideas?  Is there a way I can lower the lab value?  Is it really indicitive of anything other than a "non-specific tumor marker"??

Thanks!

Michele

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Rocklove's picture
Replies 8
Last reply 12/5/2010 - 2:28pm

Wishing I had some good news to post. But thought I was walking into Moffit Wednesday to start the PD-1 trial. Got there... Oh no.. you need to see the doctor before we can start.

Doctor walks in, bad news.........we can't put you on the PD-1 with Vaccine trial because your HLA is A*03. I took it in stride after picking my feelings off the floor. OK Doc what do we do. He said compassionate IPI is our choice. He would rather do the Adoptive Cell Therapy but it takes at least 6 weeks and the way the tumors were growing (they have tripled in numbers in the liver) he did not want to waste the time and he would rather get me started on the IPI. The IPI should start within 2 weeks.

I went along with his recommendation .... (please keep in mind I was in shock and not responsible for my actions after news like that.)

(For those that don't know my history with Stage IV diagnosed last Dec is Docetaxol-YM-155 for 2 rounds (6 weeks) then failed, 6 rounds of Bio Chemo and 2 months of maintenance (IL2) then failed. No need to go into the stage 3 surgeries and limb infusions procedures in the groin and leg and radiation for the 2 years prior starting Dec 2007 @ Moffit in Tampa).

After a day of being kicked to the curb an MPIP friend said "we have a lot of work to do. We need to find out why... they told you 1 month ago you were HLA 2a positive........why now A*03 what happened?"

She said "Call the PD-1 Trial administrator and find out if you have to be HLA 2a positive to be in the trial and if it yes, ask for an exception."

She said

"Email the doctor and ask why I would only get 3mg of IPI on the compassionate basis and most of the trials that went on were 10mg?"

" Ask him what is plan b? We need to have that plan in place no time to waste if IPI does not work."

"Ask him since IPI takes 3 months before you scan... can there something to find out the progress in the middle of the 3 month time slot?"

I did email him, not all questions answered but she got me to get him thinking harder I hope.

If any of you have any suggestions or questions to help out in my quest for the silver bullet, I would appreciate it.

I have personally met several people from the MPIP board and most have been extremely supportive. They will at least help extend my life.. and hopefully they help save it.

By the way, I'm back in the game in fighting mode again.

Rocky (Stage IV Liver Mets)

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djpayn's picture
Replies 4
Last reply 12/5/2010 - 9:07pm

Hi all.

For about 4 weeks now, i have been plagued by severe nausea and an upset stomach. i saw my onc who ordered a abdomen scan, that came back with negative results for any tumors, cysts, ulcers, etc...

during the past 2 weeks, i have lost over 15lbs.... i have no appetite and just the smell of food makes me nauseas. i am managing a pb&j or grilled cheese every couple of days, but not much else.

my doc wants to send me to a GI doc for a scope....

i will probably have this done soon, but wanted to see if anyone has had any similar experiences -

im not currently on any meds that would alter my eating habits and the progression on the stomach problems is increasing. i have considered this could be a stomach bug, but OTC medicines like pepto do not help either.

thanks for any input....

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/4/2010 - 2:14pm
Replies by: Charlie S, Jamietk

Hello.

I have recently been approved for MediCare but I do not understand what MediCare is.

I was told that I am now recieving MediCare benefits as well as the MediCaid benefts I was previously on.

What is the difference in the two?

Any help or personal experinces will help.

Thank You.

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