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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Lori C's picture
Replies 1
Last reply 12/9/2010 - 9:51pm
Replies by: washoegal

I am continuing to read this board and praying for all of you fighting this disease.  I am having a rough time since losing Will, as I had no idea what it was like to lose someone as a caregiver.

Before Will got so ill last April, we had just begun  working on a film project about his life - we'd hoped melanoma would be a bump in the road.  It turned out to be a wall that we could never quite get past.   Will quickly became too sick to continue with the project.  I had already written a number of articles about him and his remarkable spirit and courage and life, and am trying to continue work, this time on a book. 

I am trying to capture and describe the emotional pain of this illness and finding myself at a loss.  If anyone on this board would be able and willing  to contribute their thoughts on this subject, I am asking you to please email  me at Brennan07 at aol.com 

No one's name or identifying information will be used unless you specifically ask that I do so, in which case I'd be happy to oblige.  This board was my support during Will's fight.  Will, though, was quite isolated except for me, until someone from this board read about him and offered to talk to him.   As I've mentioned, he was a person with a disability (labeled mildly cognitively impaired, a label I thought was very inaccurate - he'd had what was likely a prenatal stroke and suffered a series of misdiagnoses and educational malpractice experiences).  For months, I tried to find him support through various organizations - all the likely suspects, and then some.  I could not.  I could not find support groups or a therapist who would take him on.  The person from this board (and if you are reading this, I can never, ever thank you enough)  was the only other person with melanoma he'd ever met, and was an immense blessing.  But the emotional toll of this disease was devasting on both Will and me.  I want to make sure I write about it with the respect and accuracy it deserves.

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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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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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Jaime.30's picture
Replies 15
Last reply 12/8/2010 - 5:33am

I am newer to the board but have shared our story with a few of you so I thought I would post a little update. I am the caregiver to my husband  and in September he had a Craniotomy to remove 3 small clustered lesions which turned out NOT to be Melanoma but inflammation and he recently had MRi's done of his brain and spine again and still nothing there so they have determined that it was more than likely caused by the radiation that he had after the primary was first excised.  It was on his ear and the inflammation was on the same side just above the ear in the brain.  So he was declared NED and still at stage III and not stage IV yet.  At his next appointment his doctor felt something in his neck dissection scar that he feels is suspicious so off for a CT scan....still waiting on those results but  he has had needle biopsies done in this area before and all has come out just fine.  We decided when the doctor was concerned that after so many false alarms and so many late nights talking about the what ifs of it all that this time would be different..we were not going to worry or discuss what could happen if it turns out to be melanoma this time around.  I always worry...my nature is a nurturer and a worrier but my husband is a very calm and one day at a time kind of guy and last night he says to me..." So what are we going to do if this is a tumor?"  In all honesty I wanted to scream and throw a fit...and say I can not handle going there right  now...that I have a horrible feeling that this stupid cancer is going to take you away from me and away from our dreams that we are still planning ...but I didn't I was a good wife and I told him we will handle it together and we would find the best damn plan we could find to get rid of it.  It is so hard to not know.  He is finally feeling better and getting ready to go back to work.  He was very weak on the left after the surgery but is doing much better and the lingering Interferon side effects have finally made their exit for the most part...If Melanoma does come back...ok...off to battle we will go...but I just want him to have some time to feel good...to be able to do the things he wants without being sick from treatments.  I wish so badly I could just take this from him...I feel so totally helpless a lot of the time.  I guess I ended up venting a little more than updating....sorry. :o)  I guess the only question is does it ever get better...does the thought of a reccurrance ever stop sending families into complete and utter melt down emotionally??  I have met several women who have lost their husbands to this beast and they have done so with Grace and strength and I just hope and pray I can keep being strong for my husband the way they have.  I do really well on the outside but inside sometimes...not so much!

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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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Melanoma Mom's picture
Replies 37
Last reply 12/7/2010 - 2:45pm

We had another visit to Dana-Farber on Tuesday. It was supposed to be an easy follow-up on our 14 year old son's two SNB surgical sites ..... never assume anything will be easy!  Josiah's body is trying to reject the dissolvable stitches and he had signs of a slight infection in both spots. So the surgeon cleaned, poked, prodded and packed the wounds with gauze - no pain meds or anything. Josiah was stoic as the blood ran, literally. What we had hoped might be a nice family day in Boston afterwards was not to be (we had brought his two younger sisters (ages 8 and 12) with us this time - a first to the hospital). Josiah was SO upset/mad/devastated after the appt. and he cried and raged inside the car. SO hard to witness and the girls were upset too. We finally got everyone calmed down enough to go out to dinner. Soon the kids were all laughing, but my husband and I felt like we had been run over by a mac truck - once again. I felt such pain in my heart for my son, as well as my daughters, who now have a very different life too.

The Oncologists and surgeons are strongly suggesting that we have Josiah try Interferon. I have been the hesitant one ... knowing the limited success and the possible side effects. But Josiah is adamant about trying it. I am fearful that if I put my foot down and tell him "no", he would blame me subconsciously if the cancer comes back. My husband also thinks he should do it. So that is the plan ....

We are able to do the treatments in Maine where we live and I have set up the start date of December 13th so that 2.5 weeks of the first treatment month will fall during his school break. I am looking forward to some time off from driving to our stressful visits in Boston .... 7 trips in 7 weeks, two surgeries, one devastating diagnosis, hours of scans - enough! Hopefully we can take December off from going there and can enjoy some of the holiday season here in Maine, especially the few weeks before he starts treatment. 

Please hold Josiah in your prayers .... children shouldn't have to fight cancer, but no one said life was fair.

stage IIc

NED - 8 days and counting .....

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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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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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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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nicoli's picture
Replies 5
Last reply 12/7/2010 - 12:18am

I'm stage 3 and the onc is thinking of using radiation to kill mel cells that are left after  wide excision surgery of several months ago. We know there are remaining cells because 2 mets have recently been found in that same area, one rising up right under the graft skin! I have read that radiation isn't very effective against melanoma but can't seem to find facts or figures. Anyone here able to provide accurate information?

Nicki, stage 3b, dx 12/29/2009

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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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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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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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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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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