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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n/t

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lhaley's picture
Replies 14
Last reply 10/18/2010 - 3:42pm

Surgery went well yesterday. The Dr. said better than expected. What did he expect????  He was concerned that the tumor on my arm was entangled in nerves - it wasn't!!  He also took three nodes from under the collarbone. We know from a fna that one was melanoma.  More than 5 weeks from first ultra sound to do surgery since a second spot was picked up. During that time there was no growth!!

Back to the tumor board to decide next step.  Since hopefully  will be at NED status once again (yeah!!) there are really no options.  I've already done Leukine and have had 4 recurrances through out the body since then.  It was my choice to operate and not go with a trial or IL2. They are testing me for B-raf and there is discussion about doing interfuron even though I'm stage IV.  My melanoma has presented in a unique way - solitary tumors and this is the first time in a node - over the past 4 years. 

My body has proven by my allergies to be very sensitive to any medications.  I hear the tumor boards recommendations in 2 weeks.  Celebrating the day by feeding the grandbaby this morning and now sitting on the couch watching football. 

Linda

Stage IV hopefully NED once again!!

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Jerry from Cape Cod's picture
Replies 7
Last reply 10/18/2010 - 3:16pm

Just wondering if anyone from the forums will be attending.  I noticed they changed the venue to a conference room.

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Sharyn's picture
Replies 7
Last reply 10/17/2010 - 8:16pm
Hi everyone,
Just back from Montreal and my 2nd round of Ipi is now completed. I had virtually no side effects from Round 1, so I'm hoping for the same this time.  
I also got my Sept 16 CT scan report. It only picked up 2 of the 4 brain tumors that I had treated in May. One is unchanged, the other increased from 6mm to 10mm. I can only assume the other two are either gone, or have shrunk too small to be detected. The lung tumor has increased from 4.4cm x 3cm to 5.5cm x 3.8cm, and the one on my back is now 3cm x 1.5cm. Now remember, this CT scan was done BEFORE I started treatment, so these latest numbers are the baseline for my current treatment. In early December I'll have more scans done, and we'll compare the results to the Sept 16 scan to see if the treatment is working or not. That's about it for now. Thanks so much for your continued prayers and support.
Hugs
Sharyn
Stage IV
Dx Mar 2006, WLE, SNB, ILP, PV-10, Hysterectomy, GM-CSF, WBRT, Temodar, BRAF negative, SRS, Mastectomy, and now Ipilimumab 

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Hi,

 

Little worried Lauren has posted for awhile. Anyone know how Jenna is doing??

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Sherron's picture
Replies 8
Last reply 10/16/2010 - 11:37pm

Hi everyone, Just a note to let those of you who follow our story...Jim has finally accepted to go to the Doctor....We are with the VA and it had been like 15 months since he had been.  It is like starting all over...said they could see him on Dec 23rd....Well, our best advocate that lives close to us (daughter-in-law )got involved...He has an appointment Monday at 10:00am.  He needs to be on some kind of pain management.  I know we have gone to Stage IV, as he lumps and bumps everywhere, bruising like stuff all over, mostly stomach right now....and deep pain in the groin.  He has only worked 5 days in September...and so far 1 day in October.  It hurts, to stand, walk, or sit....so he reclines most of the time.....He had 4 very good years, with nothing being done no, WLE or SNB, just his natural stuff, but it has progressed, and now FINALLY he realizes he needs some pain management.  It was very hard for him to say he will go....and my goodness....Monday, it not here yet.  So hoping he will really go when it gets time on Monday. 

Take Care,

Sherron, wife to Jim

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jag's picture
Replies 2
Last reply 10/15/2010 - 9:50pm
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JerryfromFauq's picture
Replies 2
Last reply 10/15/2010 - 9:48pm

i have  posted an update on the off Topic Bulletion Board in response to the many requests for my status and updates from my great Melanoma Patients Information Page (MPIP) Family.  I love this group of caring, compassionate, and intelligent people that I have met during the last 4 years since finding the fabulous group Founded in 1996 by Jeff Paterson to honor his sister-in-law.

My update is under the JerryFauq post by JackieW.

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Anonymous's picture
Anonymous
Replies 0

Hi Linda,

 

How is John doing.???? Hope he is doing better.

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Hi Lauren,

 

Glad to see you are posting on the Board. How is Jenna?? She is in our prayers.

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Sherron's picture
Replies 6
Last reply 10/14/2010 - 10:01pm

Hi Linda - thinking of you today and wishing you the very best on your surgery tomorrow...Prayer & Hugs.

Take Care,

Sherron

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EricNJill's picture
Replies 11
Last reply 10/14/2010 - 4:45pm

Eric's vacular tumors have been bursting.  We've been bandaging them up and tonight I changed one of the bandages because it was seeping so bad that it saturdated his sock at work today.  When I removed the bandage the odor was so bad I almost got sick.  I cleaned it with alcohol and still the odor was from the tumor awful.  His leg has recently become very swollen and this area as well as an area on his thigh where he has other vascular tumors is red.  I outlined the redness in pen to see if it grows, but I'm beginning to think he may have an infection.  I have never smelled an odor like that from his vascular tumors after they burst.  He is also running a fever of 99.1 right now.

I called earlier to our specialist in another state but they were gone.  What are your thoughts?  Anyone else had this happen?

Thanks, JillNEric in OH

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Hello everyone, this is a good overview of the recent advances in systemic treatment of melanoma from the Annals of Oncology.

For the full text:

http://annonc.oxfordjournals.org/content/21/suppl_7/vii339.full

ABSTRACT

After decades of phase III trials failing to demonstrate an impact on survival of various drugs in metastatic melanoma there are finally significant advances in systemic therapies for melanoma emerging. Novel ways to modulate the immune system by monoclonal antibodies as well as various signalling pathway inhibitors are responsible for creating a whole new therapeutic landscape. For the first time it is likely that a number of new drugs with completely different mechanisms of action will be approved in the near future. The imminent candidates are the anti-CTLA-4 antibody ipilimumab, and the highly selective BRAF inhibitor PLX4032. But in each class other molecules are under development with good perspectives. Various new combinations will have to be explored and it is reasonable to expect synergies between the different classes of drugs as well as between novel molecules within the same class of drugs. Here, an overview of current developments and the most important new drugs under consideration is provided.

 

My best to all of you

Emily - wife of mike, stage 3a - 14 mos NED

www.emandmichael.com

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

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Lori C's picture
Replies 4
Last reply 10/14/2010 - 11:40am
Replies by: Sherron, rj, Fen, Pat from Ohio

I want to thank the remarkable people - patients, caregivers, and everyone else - from this board for their unending support during the time Will was fighting this disease and now, for your overwhelming kindness to me. 

Having lived in Israel & Australia, where melanoma is epidemic, I long had a fear of this disease.  3 years ago, I lost one of my dearest friends to it, after a courageous 9 month battle during which the cancer responded to absolutely nothing.  As she was guardian to her brother's 3 children - he and his wife had been killed in a car accident a year before - this disease seemed to me a vicious, relentless thief.

Will, and his fight, became a part of me in a way that I guess only caregivers can quite understand.  No matter where I was or what I was doing, all of my love and attention really belonged to him.   Will's lifelong fight for autonomy and independence astonished me in it's focus, and he brought the same courage to the fight against this disease.  But he could not do the research, find the resources, and weigh the many variables needed to really battle this monster, and that is where you all provided the most invaluable help.  My only regret is that I didn't find this board far earlier, and that is a profound regret. 

Right now I am feeling, as Jung said, "a fatal resistence to life in this world."  I miss him too desperately to imagine getting through this day, let alone those which may come.  For anyone who didn't know Will, but might like to, here are two - very incomplete - pieces I wrote about him

 
 
I will keep checking this board because I care so about all of you and because I need to stay connected to you.   I owe all of you more than I could ever possibly repay.

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Jen07's picture
Replies 3
Last reply 10/13/2010 - 10:36pm
Replies by: Jaime.30, Anonymous, ChrisB

Hi everyone.  Its been so long since I have been on here.  I had to take a break from this site last year after Andy was done with his interferon.  I love all the support you get from everyone on here but its also sad b/c this disease is just so horrible and is so heart breaking.  Andy has recently had a constant headache that goes from dull to really hurting.  I don't want to say severe b/c it hasn't hurt so bad that he's been layed up in the bed all day from pain.  Anyway, he went to see his PCP for his and they did a CT scan which was negative.  They put him on a 10 day regiment of inflammatory and muscle relaxers which he said eased the pain some but never took it completely away.  He does have some days where the headache goes completely away but not for long.  Anyway, the headache has been going on for 7 weeks now and last week when we went for his 6 month follow up with his oncologist, they suggested he have a MRI done since the ct scan was without contrast and pretty much useless.  His Dr. said she didn't think it was melanoma related since he is showing no other signs such as numbness, slurring speech, visual problems, not being able to focus or keep track of thought.  He's just simply had a constant headache.  She seemed to think a constant migraine.  Either way, i am super worried.  We have been told twice now that he's had cancer and are only 2 1/2 years into remission.  He made it to 3 years last time before we found out it had come back. He's stage 3, btw.  What do you guys think?  Does anyone else suffer from this kind of headache? 

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