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 3
Last reply 11/9/2013 - 11:32am
Replies by: JoshF, Anonymous

All of the presentations were videotaped and can be watched here.  Please feel free to share the link with other patients or caregivers who might be interested.

http://media.surgery.northwestern.edu/Mediasite/Catalog/Full/6521fd9b9b174e1f8c5e567dc178c9a721?mkt_tok=3RkMMJWWfF9wsRonvqXNZKXonjHpfsX74%2BwpXaa3lMI%2F0ER3fOvrPUfGjI4DTstjI%2BSLDwEYGJlv6SgFTrXHMbpv1LgPWhQ%3D

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JerryfromFauq's picture
Replies 1
Last reply 11/9/2013 - 9:13am
Replies by: SABKLYN

The Molecular Targets and Therapeutic Uses of Curcumin in Health and Disease

 edited by Bharat B. Aggarwal, Young-Joon Surh, Shishir Shishodia

 

Would like to borrow  it.

 

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

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ncdaniel's picture
Replies 2
Last reply 11/8/2013 - 10:38pm
Replies by: ncdaniel, Jeff G.

Has anyone had TIL treatment without the IL-2 to follow? Does anyone have a good or bad story to share as my wife considers this treatment option. I know in most cases the TIL is done with Chemo and Radiation plus IL-2  but in this case it would be only chemo and the Til cell transfer. any comments are more than welcomed.

Trust in God - Live one day at a time

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Hello Everyone,

I am on my second day of Temodar and I am in so much pain.  My head back and neck is killing me.  These are all sights of my melanoma.  My throat is closing up again and I can barely talk or swallow again.  I didn't feel like this when I was on the Mek/Tanfinlar, it actually helped my throat and head.  I don't want to quit the temodar if this is normal.  It's like my mets are inflammed and causing me pain.  Has anyone done temodar with similar effects.  I feel like I am dying.  I have a call in to my doctor to see what I should do.

As far as getting gamma knife again, they won't do it because one of my brain mets is too close to my eye.  They will do external radiation if my vision starts to get affected.

Thanks for your help.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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DonnaK's picture
Replies 1
Last reply 11/8/2013 - 2:11pm
Replies by: Janet Lee

Has anyone had radiation to the spine (low dose)?  What about radiation while taking dabrafenib/tremetinib?  John has a 3cm mass in his spinal canal (ID'd by MRI) but the docs believe it is asymptomatic.  We initially declined the radiation as he had a very poor reaction/response to WBRT but as John's pain increases, I am wondering if it is actually neuropathic pain.  Any successes with spinal radiation?  What about treatment with neurontin or other drugs?

Thanks,

Donna

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/8/2013 - 1:50pm
Replies by: Janet Lee, Anonymous, Owl, DeniseK

So I started Temodar this evening.  I got sick almost immediately.  I think I will take it on an empty stomache or right before I go to bed next time.  I have a call into my gamma knife doctor to confirm they won't do gamma knife again so I can shop around for someone who will.  Basically they are saying that if the temodar doesn't work I don't have any options left.  IL-2 is out due to brain mets.  Dr. Minor says he hasn't had success with IL-2 in people with brain mets because it makes the brain swell and it's counter-productive.  I haven't researched this myself but I trust him as a specialist.  

I've been told to ask Merck for compassionate use of their PD-1 drug so I guess I'm going to send them a letter and hope they will help me.  

Has anyone heard of any FDA approvals coming soon?  

I guess I will know within a week if the temodar is working or not so it would be nice to at least have something to continue my fight.  

I have done zelboraf, mekinist/tanfinlar, ipi, WBR, SRS, and gamma knife.  Anybody with any suggestions is welcome.

Thanks so much

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Replies 4
Last reply 11/7/2013 - 9:16pm
Replies by: Anonymous, Tina D, Michelem, Janner

I can't figure out how to do this on the new site

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RAF kinase inhibitors have substantial therapeutic effects in patients with BRAF-mutant melanoma. However, only rarely do tumors regress completely, and the therapeutic effects are often temporary. Several mechanisms of resistance to RAF inhibitors have been proposed.

Continued here:

http://www.nature.com/nm/journal/v19/n11/full/nm.3392.html?WT.ec_id=NM-2...

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rebeccasilberman's picture
Replies 3
Last reply 11/7/2013 - 3:28pm
Replies by: rebeccasilberman, Anonymous, DebbieH

Hi,

My name is Rebecca. I was diagnosed with Melanoma in July. I had surgery to remove the nodule on my right thigh and a sentinal node biopsy. One of the nodes was positive for cancer.

I have been going to doctors and trying to fugure out what to do next. I am very aprehensive to do Interferon because I have a history of depression. I have been told by two doctors that BCG is an option.

Has anyone tried BCG and if so have you found any benefit?

 

Thank you!

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DeniseK's picture
Replies 7
Last reply 11/7/2013 - 3:27pm
Replies by: aldakota22, Anonymous, DeniseK, awillett1991, JerryfromFauq

Didn't mean to post anonymously

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Judy D's picture
Replies 8
Last reply 11/7/2013 - 3:00pm

Anyone not on any treatment plan having been diagnosed stage IV? The reason I'm asking is because I'm stage IV with NED for the last 6 months. I was on Zelboraff but my Dr took me off because of the extreme photosensitive issues I was having. I am going to begin new drug soon but wondering if we will ever be free of treatment
I am so thankful and blessed to be in the situation I'm in now. I just believe we can never give up

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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HopefulOne's picture
Replies 7
Last reply 11/7/2013 - 2:42pm

Hi there ... my husband had his last infusion on September 10 (he's been Stage IV since May). Had his PET scan last Tuesday (7 weeks after that last infusion) and we got the report Saturday (don't see oncologist until tomorrow afternoon). In it ... it shows some lymph node involvement (2 with low SUVs), an area of soft tissue density in his chest and some other new focus with increased activity in his thighs. I know we'll find out our course of action tomorrow - but just wondering if the Yervoy needs more time to work its potential magic. Any thoughts/experiences? Trying to think/hope the doctor would have called us last week if she was overly concerned ... but then again just wondering if she was waiting to have a more indepth conversation with us tomorrow ... Thanks ... 

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POW's picture
Replies 3
Last reply 11/7/2013 - 12:44pm

Shelby Moneer at MRF posted a message today asking us to let him know when we see spam postings. I am moving his message to new thread so it will be easier for everyone to find when needed.

=========== Original Message =====================

 

Hi Linny,

Several MPIPers contact me directly when they notice spam on the bulletin board. I delete these posts immediately, so I'm not sure how or to whom you have reported spam in the past.  Please feel free to let me know if you see something we've missed. You can email me directly at smoneer@melanoma.org. I try my best to look through MPIP posts every day or two for spam but I can't possibly catch all of it. Our new website allows us to delete all of the spam much faster than before and we are continuously working to decrease the amount of spam that gets through. Again, we can't possibly stop all of it, but I assure you, we are trying our best.

Thanks,

Shelby - MRF

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My last MRI show signs of early Leptomeningeal disease (brain tumors) metastatic melanoma. They want to do a biopsy of one of the tumors to make sure is LM disease before trating with standard protocol (radiation plus quimo)

Few questions:

Has anyone had this procedure? I'm a bit scare of it.

Is Zelboraf  or Temodar treatments good for a NON B-raf mutation patient?

Is anything left for me outthere besides radio-quimo?

Thanks

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