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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stillhopeful's picture
Replies 5
Last reply 10/21/2010 - 3:38pm
Replies by: LynnLuc, stillhopeful

As a next step, I am considering adoptive cell transfer therapy.  I'm interested in connecting with people who have gone through this procedure (successfully or unsuccessfully), or might also be considering it.

As I understand it, this procedure has been done over several years at the National Cancer Institute.  A similar procedure is also available at a cancer hospital in Seattle.  Recently, it became available at MD Anderson and Moffet (sp?).  Because of my HLAA typing and the fact that I have mucosal melanoma, I can go to MD Anderson or Moffet.  I think I will go to MD Anderson.  Nothing against Moffet; it's just that I already contacted MD Anderson before I learned that Moffet just started offering it as well.

I hope to hear from you!

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sharmon's picture
Replies 5
Last reply 10/20/2010 - 1:09am

Hello, Since February and again  last week Brent had his scans and continues to be stable and they think one of his tumors in his lungs is completely gone.  He is now on his 9th month and the rash is managable.  He has some fatique but able to do most anything he wants to.  As part of the treatment they wanted to test the tissue again for mutation changes and decided to go into the groin this time as they thought that the lymph nodes that had shown up in the scans would be easier to reach than the lungs.  Well the proceedure never got and melanoma out of those spots.... only lymph fluid and they tried two different spots that showed up on the scans!!!!.   So we have to try to biopsy the lung tumors in December.  Interesting... his doctor was out of the country last week and we are going to talk to him to go over the scans and results this week.  Good luck to all of you and thanks for being there.  We read every post.

 

Sharon and Brent ( stage 4)

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Eileen L's picture
Replies 11
Last reply 10/18/2010 - 6:25pm

Hi to everyone. I haven't been on the board much since the new format was instituted, but think of this wonderful community often. I am a stage IV survivor, diagnosed stage IV over three years ago.

Wanted to share my good news with you all. I had my four month scans this week and everything remains stable, no new growths. Just a few relatively small tumors hanging out in my lung and right adrenal gland, not growing and not causing any problems. I feel so blessed! For those of you who don't know or remember me, I am one of the very few people who responded to soreafinib/Nexavar. I have been on a full dose of the medication for over three years now.

Thanks to all on this board who continue to share their experiences and hope with our community!

Eileen L

Stage IV

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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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ErikaHouston2's picture
Replies 3
Last reply 3/5/2012 - 1:46pm
Replies by: Lori1976, LynnLuc, ValinMtl

I was just recently diagnosed with Crohn's disease. Curious if anyone else here has experience with both melanoma and crohn's or IBD? My melanoma was early (Stage I, .65MM), but the treatments for the Crohn's disease do concern me since they are all immune system suppressing (steroids, Humira, Remicade, etc). 

Some of you may recall MD Anderson running a bunch of tests as they were concerned that my two severe GI bleeds (hospitalized/transfused) were somehow melanoma related. While Crohn's is not a peach, I'll take this diagnosis over melanoma metastisis any day.  It was very nice to have MD Anderson tell me they wouldn't treat me for this :-).

My Crohn's GI specialist is aware of my melanoma history and the complications for treatment of the Crohn's. She has started me on a mild steroid - Entocort.

 

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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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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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Hi Lauren,

 

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

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jag's picture
Replies 2
Last reply 10/15/2010 - 9:50pm
Insert Generic Inspirational Motto Here

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Jill and Eric in Fl's picture
Replies 40
Last reply 10/29/2010 - 11:32pm

I wanted to post an update to let you know that Eric has been moved to hospice. He was having a lot of pain and the meds we had at home just weren't controlling it anymore, it got so bad Sun night I had to call an ambulance. On the way to the hospital his heart rate was 240, the doctors all came in and gave us our options and he decided no more treatments. He was moved to the hospice house on Tues and they finally have his pain under control and he is very lucid sometimes and very out of it talking nonsense other times. Nights seem to be the hardest he get out of bed and try to go home, last night he told me I was scaring him and that he didn't trust me anymore, I know it's the disease and he medications talking but it broke my heart. He hadn't eaten in 3 days but since the pain is under control he has started to eat  little. We have no way of knowing how long we have left but we know it's between him and God now. We are prying for a peaceful passing or a wonderful miracle. It is very hard because he gets very anxious when I am not here so I try to stay with him but I also need to go and comfort and console my children. My 13 year old daughter, who because of this disease is wise beyond her years, said "Mom, Dad doesn't have much time left, go take care of him, help him with this final journey, you can take care of us later"  They have been wonderful, taking care of things at home and putting on such brave faces. My 10 year old son said it best, "Mom, melanoma is mean"  I couldn't agree more. Praying for peace and comfort for Eric and praying for all the warriors out there battling this awful mean disease

Jill and Eric in Fl

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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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himynameiskevin's picture
Replies 18
Last reply 10/19/2010 - 8:27pm

So I'm 3 weeks and 7 days out of the hospital and IL-2 treatment. All side effects have passed except for a lingering itchy-throat cough that is going away very slowly. I had an MRI done last Monday and thanks to the stereotactic radiation I had done, the tumor in my brain has "essentially vanished" and the rest of my brain appears to me clear of any new lesions. Good news. As for the visible ones on my chest and my back.. the little nodule on my chest definitely seems to be smaller than it was at one time. Good news? After about two weeks after the treatment, the large mass on my back definitely seemed smaller, softer, and any pain accompanied with the pressure of it's size had pretty much disappeared. My wife and good friend confirmed this. Unfortunately a day or two after my MRI, it started to come back to it's normal shape and size and the slight annoying pain is back. I have heard that it is possible for tumors to swell up or grow in ways before shrinking. Has anyone ever heard of this happening? Or experienced something similar? And as for the ones on the inside (liver, lungs, lymphs) I hope they're following the one on my chest and getting smaller. That would be nice. I get my CT scan on the 25th and talk to my doctor about the results on the 27th. Hoping for the best. If I have any positive response to the IL-2 it looks like I'd be doing another round of the IL-2. Which I'd be glad to do.. if that's the case. Lastly, I just found out that my tumors have the BRAF mutation, so the the PLX drug or Ipilimumab seems to be the next step if the IL-2 isn't effective. My doctor mentioned some clinical trials aren't available to people who've had a brain tumor, unfortunate. Not sure if that applies to these options, guess I'll see when I gotten there. Hope all is well with everyone here. It's nice to part of this community. A constant reminder that we're not alone, and there is always hope. Enjoy your day.  -Kevin

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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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donswife's picture
Replies 6
Last reply 10/19/2010 - 5:28pm
Replies by: emilypen, donswife, Anonymous, Sherron

Hi.  I am a new user who has a friend who found this site extremely helpful and informative.  It has been recommended to my husband that he participate in a clinical trial with the drug mek kinase.  Does anyone have any experience with this?  We are in Canada.  

Thank you so much!

Never Give Up, Never Surrender

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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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