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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Anonymous's picture
Replies 1
Last reply 12/12/2010 - 11:34am

http://www.clinicaltrials.gov/ct2/show/NCT01248936?term=ml25597&rank=1

 

Patients must have the BRAF V600E mutation, failed prior systemic treatment and no symptomatic brain mets.

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EmilyandMike's picture
Replies 1
Last reply 12/11/2010 - 7:46pm
Replies by: Lori C

Hello everyone:

I recently found a fundraising link for Tom McLaughlin who was featured in the NY Times article on melanoma clinical trials back in September. The story of Tom and his cousin was so sad.  I wanted to thank him for doing the interview and exposing the treatment of melanoma patients in these trials.  His mother sent me a link to the video below and it it a good one to share. Perhaps MRF has some suggestions on what we can do as individuals to make sure clinical trial rules are clearer and more fair.  These trials are the only real option for most people with advanced melanoma and because melanoma isnt like most cancers the clinical trials should reflect this!  And it really pisses me off that there arent more trial options for stage 2/3 which would logically seem to be the best time to do treatment - BEFORE it spreads.  Melanoma is so unfair but these clinical trials should not be.

Video from Nov

http://www.bakersfieldnow.com/news/investigations/106491678.html?tab=video

NY Times article from Sept

http://www.nytimes.com/2010/09/19/health/research/19trial.html

Fundraiser for Tom

http://www.raiseitnow.com/4254/thomas-struggle-with-melanoma/

 

Thanks for listening - felt like venting

Emily

wife of Mike, stage 3a

www.emandmichael.com

Our experience with melanoma: http://emandmichael.wordpress.com/

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Anonymous's picture
Anonymous
Replies 0

 

Hi Linda,

Happy to see you post. I have been wondering how Cass is doing. She is in my prayers and I always think about her.

Any update on Cass would be great, we all care about her.

Tell Cass Jan sends her love & hugs.

 

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scots's picture
Replies 7
Last reply 12/10/2010 - 11:54pm

I finshed the HD interferon on Monday.   That was a tough 4 weeks.   I still feel almost as bad as I did while takeing the HD.    I'm getting ready to start the 11 month low dose regiment which I'm not looking forward too.  Hopefully the LD will not be as bad as the HD.

 

Scot

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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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Vermont_Donna's picture
Replies 3
Last reply 12/10/2010 - 5:27pm
Replies by: Fen, ValinMtl, lhaley

Hi,

Got the wound vac yesterday....need to have the dressings changed M-W-F.My leg already feels better with this "negative suction". I also was seen bythe hyperbaric oxygen chamber treatment doctor...I am a good candidate for this too...can do both. The new chamber has a clear top so you can see out and you can watch a movie. The old one has a solid top and you can only listen to a book on tape...that would be ok with me too, but being able to see out for me would be good. Plus I would need some ativan!

I am going to see another oncology surgeon at DHMC who is from MD Anderson...see what he might think about my course of treatment, what other suggestions since, amputation seems to be so popular among my docs. (Not me).

I have found three new melanoma spots on my leg, so am feeling discouraged. Thank God I am doing Ipi! I am going to see a naturopath for some different ideas and see what I can blend in to what I am doing.

Thanks for listening everyone!

Vermont_Donna

stage 3a

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Everymoment's picture
Replies 9
Last reply 12/9/2010 - 10:35pm

Hi guys,
So I have had four primaries and I feel like I am just waiting for something to go wrong. One cell had to have gone through. Why is it that a 9 year old has to have melanoma in her brain and I am still here? I wait each and every day to feel a swollen lymph node......it should be happening to me...I had vulvar melanoma .... I just don't get this disease.....will it wait until I'm happy and I have my first kid to strike !!!!! When!!!! I'm ANGRY that this has taken over my life....I actually think about whether I will make it through a Phd program if I start...Errrr.
Everymoment

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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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