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.

Expand/ Collapse Topic
 
Replies By
View Topic
KellieSue's picture
Replies 9
Last reply 8/7/2010 - 2:15pm

After finishing the ALT-801 trial on July 2nd I continue to have positive results.

CT scan today showed stable disease! I would have liked to have seen more shrinkage but

the Dr. said I could continue to have an immune response months down the road! I'm hoping for that! :)

Haven't been around in a bit but glad to come back and keep in touch with everyone.

Kellie(from Iowa)

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

Login or register to post replies.

jeanne harvey's picture
Replies 17
Last reply 8/7/2010 - 6:08pm

 

For 7 years, my sis, Jan Brockelman (JanB) fought a very courageous battle with dignity and persistence.  She lost that battle last night. Jan was an amazing wife, mother, sister, daughter and friend with a smile that could light up a room.   Jan wanted me to thank each and every one of you for your support, knowledge and guidance through this process.  This board was very special to her and to me.

 

Keep fighting, learning & laughing. Jan wouldn't want it any other way!

 

JanBsis

 

 

 

 

 

Login or register to post replies.

ocularmonster's picture
Replies 3
Last reply 8/7/2010 - 7:02pm
Replies by: sselig, jim Breitfeller, bcl

anyone out there have ocular melanoma that has metastized to your liver?

feel like a million bucks, look good, thought I was in perfect health until a MRI revealed my liver monster.

Login or register to post replies.

ocularmonster's picture
Replies 4
Last reply 8/7/2010 - 7:08pm
Replies by: sselig, jag, LizzM

we may have a good option for my husband's treament of ocular melanoma that metastized to his liver.  SIRT at Emory in Atlanta.  It is readioembolization. Has anyone experienced this treatment?  Ocular melanoma is resistant to systemic chemo treatment, therefore there have been very few options.  He was not a candidate for liver resection so this blast to his tumors may work.  side effects are minimal and it only targets the liver....

feel like a million bucks, look good, thought I was in perfect health until a MRI revealed my liver monster.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 8/8/2010 - 5:07pm

My wife is getting ready to start WBR and I am curious if anyone on this board has been through this treatment before.   Looking for any positive notes if possible as well as side effects and expectations after treatment both immediate and long term.  Thanks for the help

Login or register to post replies.

Knutes Pam's picture
Replies 10
Last reply 8/9/2010 - 12:25am

Knute had gamma knife last wednesday for the two new brain mets.  We have started the weaning process from the steriods and hope to be able to get in an IPI trial in Sept.  He is doing well and is active on Facebook with the smaller screen provided by his I phone his visual problems are lessened.  A complete computer screen has too much visual information at one time.  It is a crazy side effect of his brain mets and their locations. We hope to get after those new lung mets in the near future.

Pam

Login or register to post replies.

sharmon's picture
Replies 8
Last reply 8/9/2010 - 8:17am

Hi, 

Brent has been on the GSK MEK trial at MD Anderson since Feb 2010.  I keep reading about the B raf trials not being durable.  He will be scanned on the 16th of this month. This is month 7 for him.   He is on the highest dosage for the trial at 2.5 mgs .So far we have overall tumor shrinkage of about 30%.   The side effect of the rash is our worse concern.  He is now taking antibiotics for the sores.   It  seems that there is not a lot of info yet on the MEK  trial results from GSK.   I am trying to closely follow this forum but may have missed the information I am looking for.   I do not want to be scrambling to find a combination trial at the last minute, so any information would be helpful.  We have specifically asked our oncologist about a plan B and  he is dismissive or our question wanting us to wait and cross that bridge if we need to.

Login or register to post replies.

regina Brittingham's picture
Replies 3
Last reply 8/9/2010 - 11:52am

Last week I had treatment at Stanford with CyberKnife for a small tumor in my brain. Things have gone well with some fatigue. Had one 30 min. treatment. Anyone else with experience or treatment?

The Best

Regina

Login or register to post replies.

ipi in DC's picture
Replies 6
Last reply 8/9/2010 - 12:08pm

Hi JIm,

Just checking in on you and how your first days are going, I meet with everybody today and start treatment on the trial tomorrow.

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

Login or register to post replies.

Jim in Denver's picture
Replies 7
Last reply 8/9/2010 - 1:09pm

 I have been meaning to post, but have had a busy July with family.  I have not posted since late May, I think.  I have waited until I have news to report, so here it is!

As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since.  Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days,  My Onc there is Dr. Wen Jen Hwu.  I am extremely impressed with MDA - a large operation, but very personal and caring.  Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm).  Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan.  MRI of brain also negative.  She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted.  She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment.  Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.

So Tuesday I will travel to Houston with my wife for two days to begin treatment.  The Ipi part is "high dose" - 10mg/kg.  The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle.  The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months.  Scans are done at 6 and 12 weeks.  Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule.  Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness.  The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3).  This is the purpose of this study.  High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy.  The side effects to both treatments should be manageable, but the list of possible ones is long.  I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.

My kids are at camp this two weeks, so no family issues with my first treatment.  My wife will be with me for the first treatment, and she has arranged family leave.  Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation.  I emailed them a couple of weeks before that to let them know about my diagnosis.  They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease.  My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.  

So that is my story for the recent past, in a nutshell.  I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March.  Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.

In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board.  You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information.  I will write when I can, but may resort primarily to posting here, depending on my energy level this week.  Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.

 

Many Thanks,

Jim in Denver

 

 

 

 

 

Login or register to post replies.

JenM's picture
Replies 2
Last reply 8/9/2010 - 4:51pm

Hi,

I posted last week and was hoping to get a few more replies.  Posted above and James from Sydney suggested that I post with sorafenib in the subject--that it might attract others who know it by that name to respond.

I started the drug last Friday and wanted to know what side effects people experienced?  What helped?  If you had a positive response, how long did it take to see that response?

Thanks again,

Jen

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/9/2010 - 5:45pm
Replies by: Anonymous

Thank you.

Login or register to post replies.

My dad was diagnosed with melanoma 2 years ago.  He's had surgery to remove the initial tumor in chest, 9 months of Interferon, IL2, Crainiotomy, and is now on Ipi.  (He's 59 with no other health problems)  Despite about 5 brain mets, a lung and liver mets, he'd been feeling great.  (walked my sister down the isle on June 25th).  On July 26th he was rushed to the ER where our Neurosurgeon performed an emergency crainiotomy to remove a bleeding brain met.  This saved his life but left him no feeling on his entire right side and unable to speak.  We've been told that he may not ever get this back, however he's been 1 week at an inpatient rehabiliation hospital working with PT, OT and Speech.  He's making some progress, but minimal so far.

The irony in this is our Oncologist called on Friday telling us every other met in his body is responding to the Ipi treament and is shrinking.....

Does anyone have a similar experience with the effects of a bleeding met?  His inability to speak is by far the most frustrating to him.  Hoping that therapy has been successful for others out there....we know recovery will be slow, but I think we need some encouragment that he can regain some of what he lost....

Thanks for any advice/encouraging stories.  We are trying to take this day by day....

 

Login or register to post replies.

ValinMtl's picture
Replies 6
Last reply 8/10/2010 - 12:49pm

I have been wondering a lot these days...I am stage iv and, if (I wish upon a star NEVER) I become unable to post or suddenly pass away, can I give my password and user name to my close friend and sistah in life to report back to the group or since the new BBoard has started does that person have to establish her own identity due to guidelines...definitely, would not be used unless I am unable.  Val

Live Laugh Love Nothing is worth more than this day!

Login or register to post replies.

MaryBZ's picture
Replies 1
Last reply 8/10/2010 - 12:50pm
Replies by: MaryBZ

I see the $20,000 target was reached and even surpassed!!!yes  To me that is amazing since I think the bracelet campaign began this May  (correct me if I am wrong).  I have passed the link on to family and friends and posted it on my Facebook page as well.  I ask God each day to help me play some part in spreading the word about melanoma.  So even though sending an e-mail and using Facebook are small in the eyes of some, it's what I can do for nowsmiley

MaryBZ

You don't know what your future holds but you know who holds your future!

Login or register to post replies.

Pages