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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JenC's picture
Replies 7
Last reply 9/25/2010 - 12:14am
Replies by: lhaley, JenC, jag, Sherron, Tim--MRF

My husband has been on the control arm of the BRAF trial, and as we expected the DTIC did not work.  We were obviously hopeful that he could have gotten the study drug and were willing to give the DTIC a shot, but I am now hoping that we didn't sacrifice precious time.  He went into the trial with maybe half a dozen subcutaneous tumors and is leaving it with spots in his lung, liver and a golf ball sized tumor in his face and constant pain.  Hopefully his participation helped further the FDA approval of the drug.

The next step is high dose IL2.

JenC

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Hi to All of Jerry's Many Friends from MPIP,

I had the good fortune to spend over two hours today with Jerry in Colorado Springs.  He has been in rehab there for two weeks, after two weeks in Denver receiving emergency and acute care for an accident from horseback riding, when he was thrown, dragged, and kicked by the horse he was riding. I was not able to see him in Denver, and waited until he had recovered enough to have a visitor.  I was supposed to get together with Jerry before all this happened, and I have been following the updates on the OTBB about his progress.  It has been a long 4 weeks, but I have good news to share with you about Jerry.  I asked him if it was ok to post, and he wants to say hello to all of you.

Let me tell you - this guy is absolutely amazing!!!  Hearing more from Jerry and his daughter Tanya about the accident and the aftermath, it is miraculous he is here at all, but the story is even better than that.   His surgeon has done a really good job of putting his face back together but couldn't quite make him resemble Brad Pitt....lol.  Jerry is very lucid, and up and around, and will be discharged tomorrow - I think he is too much for them to handle :)  His vision is off somewhat and a bit blurry, which is understandable when you consider both his eye sockets were crushed, but has improved dramatically.  He thinks that he can get new glasses that will help correct his vision, and one of the nurses there is setting him up with her opthamalogist.  His short term memory is a bit fuzzy, but Tanya says he is improving every day, and she had been an almost constant presence throughout the last month who has made a world of diference in his recovery. 

I told Jerry that he has great support from his many friends here, and that so many of you would like to know how he is doing.  He wants you to know that he is so grateful for your support and good wishes, and that it has made a real difference to him.  Tanya has read him your posts, although he has not been able to get his emails yet due to some computer problems, whihc he hope to fix soon.  Jerrry has an indominable spirit and great sense of humor, which is no surprise to those of us fortunate enough to know him.  Jerry has been a wonderful source of support, information, and wisdom to me from the very beginning of my posting on MPIP six months ago, as he has also been for many of you over a long period of time.  So I wanted him to know, from all of us who know him (and those who have not yet had the pleasure) that we miss him on here and wish for the day to come very soon when he returns.  Jerry will be back for sure, and I want you to know that fact - you cannot keep this man down!  I thanked him for his being there for me, and for all of us, just as we are and will be here for him - and a big hug to go with that thought.

Of course, we covered a lot of subjects over the time we had, most of which does not deserve to be recounted here.  I have always been impressed with is knowledge about our disease, sharp mind, and quick wit, but I also now have experienced his caring, compassionate, and helping attitude towards others.  He really feels that this board has been a community to which he belongs and should contribute - and has.  Jerry told me some of the history of MPIP, as well as a number of stories.  Anyway, I felt that I was lucky to be able to finally meet such a special guy who is a true inspiration and as resiliant as they come - Tanya said there is no such thing as an "ex-Marine", and I think Jerry is living proof of that!

Jerry will move to Tayna's house tomorow and stay in Colorado for a while, perhaps weeks, before deciding what to do next.  Hopefully he will be giving you his own update soon!

Best Wishes,

Jim in Denver

 

 

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Nebr78's picture
Replies 2
Last reply 9/24/2010 - 7:00pm
Replies by: washoegal, jag

If you have Melanoma and want to treat it, you better not have Heart Disease.  Tried  to get into a Clinical Trial, no luck.  Dr. says he can't treat it with anything strong that may stop growth because of the bad heart.  And it is bad so no arguement there.  I will not have any more Dr. appt. or CT Scans so that is that. Maybe I can find some un-orthodox treatment that will help. This will be my last post.

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himynameiskevin's picture
Replies 14
Last reply 9/24/2010 - 4:40pm

Hey everyone, I've been home from the hospital since friday. I tolerated 11 bags of IL-2 the scond round. The side effects were much worse this time as I was told and expected. I've been taking it easy, resting and recovering here at home. Happy to say that today I finally feel like myself again. Got my first good nights sleep in weeks and only lingering effects are dry hands and a little body itching. And all i do now is wait, I get another Mri in a couple weeks and a ct scan in 5 weeks and see if these things are shrinking. It's kind of nice, these 5 weeks of waiting... no appointments, no hospitals, no bad news, almost like 5 a five week vacation. Time to focus on being me again. Going to get back into the mix at work. I plan on spending alot of time outdoors, staying busy and being active as much as I can. Fill my mind with all the thoughts I had before all of this. Make my self mentally and emotionally healthy inhopes the physical will follow. Just going enjoy this time I have here and try to manifest some positve news from the doctor. We'll see. Hoping and praying.

 

 

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jag's picture
Replies 7
Last reply 9/24/2010 - 3:08pm
Replies by: Tim--MRF, jag, Anonymous, Sherron

I have noticed quite a few questions on here lately about navigating the social security/medicare quagmire.  I have luckily never experienced it.

Is there anyway we can get a FAQ area for this topic?  

Insert Generic Inspirational Motto Here

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Sherron's picture
Replies 10
Last reply 9/24/2010 - 1:51pm

Hi...Just started reading about this...as Jim now has 12 enlarged lymph nodes or tumors....some days he feels good....some days bad....and he has had all these stomach issues and bloating....Just trying to figure out if he would qualify...He's 64...I am assuming he is stage IV now...with all this new stuff showing up withing a 4 week span...nothing new this week, so far.

 

Take Care,

Sherron, wife to Jim

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Lori C's picture
Replies 5
Last reply 9/24/2010 - 1:20pm
Replies by: Lori C, jag, Sherron, molly, KellieSue

Will's brain scan was clear, which was awfully welcome news.   He's tolerating the chemo well so far - this is round four.    In two and a half weeks, another CT scan to see how things are going....

Thanks for support and continued good thoughts.

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katd's picture
Replies 14
Last reply 9/24/2010 - 1:18pm

Any one out there using interferon alpha treatment. Dr are telling me I cannot have another Pet/Ct Scan until I have gone thorugh the treatment (which I have 9 1/2 months left) and then wait 1 month.

katd

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Marshipops's picture
Replies 3
Last reply 9/24/2010 - 11:03am

Hi, just thought I'd pop by and say hello!

I'm newly registered to the site, but sadly not to melanoma.  First dx in 1996, 1.2 mm melanoma removed from my lower back.  Naively thought that would be the end of it.  10 years later it returned to bite me on my ar*e once again.  Had large steak sized piece of rump removed but no further treatment.  A year later I discovered a lump in my groin, total groin and pelvis dissection followed.  Still no further treatment!  Currently on the observation arm of the Avastin trial and 2.5 years NED.

I'm loving the new look of the bulletin board, I never could get my head around how the how one worked, which is why I haven't joined up before.

Oh, and if you wondering what 3rd world country I live in not to have received any treatments, it's the UK!  Some of you may know me as Marsha from other sites... and this is the first time I've come across a place where my name was already taken!

Marsha x

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joy_'s picture
Replies 4
Last reply 9/23/2010 - 10:09pm

Hi MRF BB Friends,

My husband Bill will complete his 2nd week of high dose interferon tomorrow.  He's doing great other than the FATIGUE.  Wow... fatigue doesn't even describe it well does it?  Just curious approximately how long before this cr@p gets out of his system and he gets energy back after the last infusion. (He is not doing the 11 month self injections afterward).

Thank in advance for anything you can share.  Wishing you all the best in recovery and healing.

Tracy

wife to Bill, stage IIIc

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jag's picture
Replies 2
Last reply 9/23/2010 - 9:21pm
Replies by: jag, washoegal
Insert Generic Inspirational Motto Here

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The Gambler's picture
Replies 2
Last reply 9/23/2010 - 8:22pm
Replies by: Anonymous

Marsha  Karen  Brandi  Diane  Mary  James  Jim M  Cara  JAG  Al  Linda.....Wow I feel like i have been adopted by a large  family. You all sent me a lot of good ideas and suggestions and most of all your support and I am very thankful. Currently I have a good oncologist and he has me on a routine schedule of exams and scans and next up is a doctor of naturopathic medicine so Deb and I are moving forward with this and I have gotten validation from several on the direction which makes me feel good....... again thank you and Deb and I will stay in touch..   Bob 

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Terra's picture
Replies 1
Last reply 9/23/2010 - 4:13pm
Replies by: W.
Hi, I have a scan to send electronically to a different country for a second opinion - I sent through yousendit.com, but he is unable to open it I am wondering if I sent the wrong file.  These are the files I see on the scan when I open it up - does anyone know which one I should attach to the email to send him. 
 
3942
autorun
dicomdir
395596
command
readme
efilmlite
pacsube
dcvalid
dcsstart
 
Thank-you.

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tsoemd's picture
Replies 1
Last reply 9/23/2010 - 10:58am
Replies by: SusanE

http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&sq=september%2019,%202010%20and%20melanoma&st=cse&adxnnl=1&scp=1&adxnnlx=1285174989-REekyEfISOM1TDxteT1XOQ

Please refer to the above link for the New York Times article that talks about this very promising drug called PLX 4032 - a highly selective V600E BRAF kinase inhibitor that is found to be effective in melanoma.  Unlike the study discussed in the NYT article, the study that we have will not randomize patients to DTIC (old chemotherapy regimen).  As long as the patient's melanoma is BRAF positive, they are given PLX 4032.  For more details, please contact Elisa Bomgaars, MD at 402-354-5860.  We are recruiting patients still but the study will complete accrual soon.

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Sharon in Reno's picture
Replies 75
Last reply 9/23/2010 - 9:57am

Hi Friends

Any stage 1 and 2's might want to run away right now......this is a bitch and the beast from hell has got a hold of me now and is not letting me go.

I'm checking in . I called Hospice last week, my sister came down, it will be 2 wks ago come this Sunday. Had more surgery to  my left arm, yep it was full of melanoma, had more brain mets, had WBR (3) stopped that after 3 times, burning pain on fire all through the night. CT Scans showing lower lunbar spine is full of melanoma, it spreads out like a horese tail and sends shooting pain down my leg, one tumor is on a eye nerve, I am now completely blind in my right eye  and 'em wearing an eye batch to stopped the double vision so I can see, I can't walk., I'm in a wheel chair &  walker, cant bath myself, blah, blah, blah...this is it. Today is my granddaughter 9th b-day so I wanted to live long enough to be here for that.  Hospice dropped the ball today w/pain meds and are getting their asses jammed....give me drugs NOW. I've asked my sister to posted when I'm your Warrior Angel. Ipi and others are a waste of time for me now cuz the beast is everywhere.

 

So I'm saying goodbye to all now, you have been more loving and a soruce of stregth for me more than you will ever know. For those of you who can...FIGHT ON & NEVER GIVE UP....I LOVE YOU...SEE YOU ON THE FLIP SIDE. LOVE, SHARON IN RENO, STAGE IV.....going down kicking and screaming with love and lots of DRUGS.

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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