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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Carmon in NM's picture
Replies 1
Last reply 2/15/2011 - 9:51am
Replies by: Suzan AB

A friend is driving me to Albuquerque in the wee hours tomorrow for a full body CT and brain MRI to be followed by my 5th chemo infusion. It's going to be a VERY long day with nearly three hours driving each way and five hours for the infusion. We're hoping so much that the good news will continue with no new mets and the one on my adrenal gland continuing to shrink. Fortunately I'll get the scan results tomorrow too so no long wait and wonder.

I hate that I'm heading into this one really tired this time but the winter storms and deep snow just really took a lot out of me this last month so what can you do? At least I know I've only got one more infusion after this one, then surgery to remove the adrenal gland and whatever is left of that pesky tumor! So about a week of feeling really awful to get through and then I'll wake up craving a cheeseburger and fries and know I'm starting the bounce back!

Carmon in NM - stage 4 since 6/10 with brain mets and an adrenal met

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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NicOz's picture
Replies 5
Last reply 2/15/2011 - 9:10am

Now I know it's the wee small hours over there (and you'd better be getting some sleep!), but wanted to post quickly to say I'm thinking of you, and hoping with all I'm worth that your first WBR is as stress free and runs as smoothly as is possible for you... and the entire treatment runs along the same vein :) Take it easy, rest up when you can 'cos you're going to need it, and take some good music in case you get stuck 'just hanging aound' (bloody hospitals :P) Thanks for the lotto numbers (kinda...) and may those little b@stards be zapped into an alternate universe.

Take care,

Nic xxx

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

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LHogg's picture
Replies 12
Last reply 2/14/2011 - 7:41pm
Replies by: paul, dawn dion, Anonymous, jag, glewis923, NicOz, Bonnie Lea, Kim K

Adelphi is an independent market research company specialising in the pharmaceutical industry. We are conducting international research to gain insight into the impact of living with stage 3/4 melanoma, on patient quality of life around the world

 
The research aims to provide patients with the opportunity to discuss your melanoma experiences to date and your perceptions of the melanoma treatments you have undergone, identifying key unmet needs
 
Findings from this research can then be used for the further development of future melanoma therapies
 
Patients are needed for a 90 minute discussion by telephone or in person and you will be reimbursed for your time. You will also be required to complete a small amount of ‘homework’ prior to the discussion, to take place between 17th Feb – 11th March
 
If you have been diagnosed with stage 3/4 melanoma and are interested in participating please see country specific contact details below:
 
 
Germany
Karin Chwallek
+49 (0)69 254262512   
 
 
France
Ref: ZR11022
+33 (0)3 20 93 31 47 
 
 
Sydney, Australia
0414884924
 
 

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Ali's picture
Replies 9
Last reply 2/14/2011 - 6:47pm
Replies by: Vermont_Donna, Ali, TAC, molly, lhaley

I spent a lot of time on this website almost 4 years ago, and appreciated everything I learned.  I thought I knew a lot, but right now I don't even know what stage I am concidered, and what my treatment options will be now.

I was a IIIb, 2.5, ulcerated, three positive lymph nodes.  Interferon tolerated for 9 months.  No problems until this week I had them take off a weird wart looking nodule that came from no where and they called back friday saying it was a metastasis from my origanal melanoma.  It was on the opposite side of my knee, maybe 6 inces away.  I only talked to the dermatologist, and not for long, so I have been going crazy all weekend.  I'm sure I will talk to my oncologist this week, but what am I looking at here?

Is this concidered a satellite lesion?  Would they bump my stage up to IIIc because I had positive lymph nodes (although it was micrometastisis there) and a satellite?  What treatments are appropriate, or could they say it won't be treated?  They wouldn't do interferon again would they?  The derm. mentioned radiation, thoughts?

I just had my last scans in September and because it was my 3 year mark they said I didn't need anymore and they did not expect it come back if it hadn't already.  Wow, I just wasn't prepared for this.  Any insight much appreciated. 

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PeterO's picture
Replies 1
Last reply 2/14/2011 - 3:46pm
Replies by: Tim--MRF

It appears ipi may be at the same crossroads as Avastin vis-a-vis the FDA. What's the latest from MRF on where things may end up with ipi?

http://www.cancernetwork.com/multiple-myeloma/content/article/10165/1703375 

www.theogler.blogspot.com

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/14/2011 - 12:09pm

 LOCATION:               BachmanLake Park                                    Pavilion Area                                    3500 Northwest Highway                                    Dallas, TX FORMAT:                  3.3 Mile Leisurely Walk or Run TIME:                          8:00am – Sign-In                                    9:00am – Opening Ceremony                                    9:20am – Warm-Up                                    9:30am – Walk Begins 

FEE:                            No fee to participate.

                                    Each Walker encouraged to raise at least $50.

 

REGISTRATION:                              Registrations received by April 30th will ensure a free t-shirt.

 

COMPLETED PLEDGE SHEET, WAIVER, & DONATIONS:  Due the Day of the Event

 

 

TO REGISTER

 

         Visit:            www.AIMatMelanoma.org

         Click-on:    Participate in a Fundraiser

         Click-on:    AIM for a CURE Melanoma Walk LOGO

         Click-on:    Dallas, TX

 

 

 

 

For additional information, please contact

Jean Schlipmann – Jean@AIMatMelanoma.org 

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EddieM's picture
Replies 3
Last reply 2/14/2011 - 9:45am
Replies by: Carmon in NM, TAC, Anonymous

I have a friend with stage 4 melanoma. Her disease isnt my story to tell, so I wont go into detail about that. But apart from just being here for her when she needs to talk what practical things could I be doing? What have you found helpful? She doesn't like to ask for anything. I know she gets tired and at times has some mobility problems. Maybe there are some things I havent thought of which is why Im asking for people with experience.

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2011 - 7:22am
Replies by: jim Breitfeller, moi

http://www.peerview-institute.org/news/content.nsf/PaperFrameSet?OpenFor...

C-kit and Melanoma articles:

Many interesting articles here.   I started the Imatinib in March 2008 and have been essentially stable for almost three years now.  I have a friend whose tumors went away on the Dasatinib.  In:   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831053/?tool=pubmed
A very detailed article.  One interesting item stated is: "While other KIT inhibitors such as dasatinib appear to have better penetration of the blood-brain barrier (Porkka et al., 2008), their efficacy of treating manifest disease in the brain needs to be demonstrated."

 

I'm me, not a statistic. Praying to not be one for years yet.

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beatricefromPARIS's picture
Replies 3
Last reply 2/14/2011 - 4:21am
Replies by: Anonymous, y'all Come In, JerryfromFauq

Hi everyone

Recent scans show peritoneal mets (among other) are progressing. Brain still clear.

So Interferon (which kept me stable for a while) has been stopped.

If all goes well, I should start IPI in 2 weeks. I will let you know how it feels!

In 2 years at stage IV, I have had 3 chemos, one bio therapy and interferon.

Options are narrowing down! This one has to work. Touch on wood.

 

 

 

 

 

 

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KatyWI's picture
Replies 22
Last reply 2/14/2011 - 3:54am

We can never get enough good news around here, so I am doing my part and sharing...I got my pathology back from my craniotomy today.  This was a site that had been treated with cyberknife, but it had grown substantially and had to be removed.  The pathologist looked at two different slices of tissue and concluded that this was necrotic tissue and radiation-induced change.  The words "no evidence of melanoma cells" are actually on the path report in black and white.  DING DONG, THE WITCH IS DEAD!  Between the cyberknife and the ipilimumab, treatment appears to be working for me.  On top of it, the other lesions treated with cyberknife in November aren't even showing up on my post-surgery MRI.  I'm so grateful, humbled, and overjoyed!

I have my 12-week ipi scans on Thursday.  I am hoping for good news in the body to go with the good news in the brain!

KatyWI

Just keep going!

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carol b's picture
Replies 8
Last reply 2/13/2011 - 10:08pm

i was wandering if anyone has any good anti depression drug. something that makes you happy...im on clanasapam 1 mg and it aint working and all it does it make me sleepy. i want to know are there any happy pills out there??

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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mimi0201's picture
Replies 2
Last reply 2/13/2011 - 9:51pm
Replies by: Anonymous, Jerry from Cape Cod

     Could someone help clarify the process of obtaining IPI?  What does "compassionate use" mean to us?  FDA approval is going to be prolonged once again according to our oncologist, another 3-4 months, he believes.  I've found a compasionate use trial, but one of it's criteria is that you must not be eligilbe for any other IPI trial.  Can any oncologist get it for compassionate use? I'm confused, the clock is ticking and meanwhile we have disease progression.

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Hi all,

Just wondering if anyone has experienced pain in/around tumour sites as th tumours are shrinking?

My husband is on Mek/PI3k trial that we know has worked ( over 15% shrinkage so far). He recently had to stop taking the drugs so a side effect could clear up and when he started back on the drugs about a week into treatment he started to get aches and pain in the areas the cancer has invaded.

This happened when he first started the drugs months ago and then gradually tapered off as everything shrunk or stopped growing.

Part of us thinks it's all good, the part of us is of course scared.... but i thought i'd reach out and see if anyone else had similar experiences?

 

thanks,

Em

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elefk's picture
Replies 14
Last reply 2/13/2011 - 8:40pm

I spoke to someone tonight who is NED after taking a concentrated regimen of Xango mangosteen juice, one bottle a day for 21 days along with one gallon of distilled water, after all other treaments had failed for stage four melanoma. Any thoughts?

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Rick from NC's picture
Replies 9
Last reply 2/13/2011 - 8:03pm
Replies by: ellen - dads daughter, JoanR, Anonymous, michelleg

Is anyone attending the UNC Melanoma Day program in Chapel Hill on Feb 23?

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