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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Kim K's picture
Replies 5
Last reply 3/25/2014 - 9:45pm

When I come to the BB, on the right hand column I don't see Who's in Chat right off the bat.  I do see it on occasion but am not sure if I have to log in first to see it.  (I will see what happens when I finish typing). If that's the case, few people will go into chat because it looks vacant.

IMHO - Please make the Who's in chat show up along the right hand side column from the get go without having to log in.  More peple will visit and it will be more active.  Same for when typing a response, all I see is the melanoma quick facts and a profile of some of the members.  The quick facts can be elsewhere instead of in the find support section, perhaps in education and home page, and the who's in chat can replace it.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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laru's picture
Replies 3
Last reply 4/6/2014 - 1:19pm
Replies by: meg, laru, sweetaugust

Thank you to everyone providing their experiences on this site, it's been amazingly comforting and informative as I help my father combat this disease.

Has anyone had an experience with PD1 drugs where they has not been any progress during the first course of treatment (3 months) but then experienced later tumor reduction?

Thanks for any information you can provide.

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mwcollins's picture
Replies 1
Last reply 3/25/2014 - 9:41pm
Replies by: Carole K

Hi all, first I want to thank you all for all the incredible support and knowledge you have provided for both Kevin and myself. I was wondering if I could pick your brains some more. I would like to find a local support group for my whole family. I know being a caregiver lends itself to stressors different than those Kevin is going through and I would like to be able to meet others in person once in a while. I'd also like to find something for my boys as well if possible. I know they have concerns that most kids their ages don't have to deal with and their friends can't really relate. If anyone knows of any, please let me know. I have asked the case nurse assigned to Kevin's case, but she has yet to get back to me. Thank you all again for everything!!

Megan

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mwcollins's picture
Replies 3
Last reply 3/26/2014 - 4:48pm
Replies by: mwcollins, Carole K, Anonymous

I saw this on Facebook and wanted to share here as well.  Lets spread the word for this little girl.  We all know the battle, and I can't even imagine being that young with this!

Megan

 

http://www.foxcarolina.com/story/25065275/nc-girl-battling-cancers-dying...

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lanasri's picture
Replies 7
Last reply 3/27/2014 - 6:47pm
Replies by: Mat, Bubbles, POW, lanasri

Wondering if anyone here is enrolled in this trial for Medimmune PDL1 + MEK for BRAF negative folks (NCT02027961).
My son has been offered this trial while waiting to get the MK-3475, which his oncologist said would take 6-8 weeks to get.
Any information on results, side effects, etc is most welcome!

Thanks!
Lana
 

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Tina D's picture
Replies 19
Last reply 4/6/2014 - 12:24pm
Replies by: meg, Anonymous, dellriol, Tina D, katie1, BrianP, casagrayson, jogo

Anyone have adrenal insufficiency due to treatments and if so, does your Doc give you a "stress dose" option for your prednisone? In times of added demands either physical or emotional . I am having extra fatigue, and am in the midst of some demanding stressors at the moment. Thyroid was also low again, so the dosage adjustment may take care of it, but if not, they told me we can discuss the prednisone next visit. Just wondering what others are doing. Thanks! I have been on 5 mg pred for long time, after pituitary inflammation brought on by ipi last year ( started on 60 and tapered to 5 eventually) I also have a history even prior to the ipi of likely being adrenal insufficient, always requiring Cortisol to keep any BP during and after surgeries.

Thanks!

Tina

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jyoakum's picture
Replies 4
Last reply 3/27/2014 - 8:46am

I have had two melanoma moles removed and lymph node axilliary dissection on the same side with one positive melanoma lymph node out of the 14 removed. I was satisfied with the "catch 'em and cut 'em" method but my oncologist wants me to look at clinical trials. Can anyone tell me of specific clinical trials they know of that have worked, what to avoid and any other specific advice? One of my big questions is: If my PET scan and brain MRI was clear, then the melanoma is microscopic at this point. How can we find something that can't be detected and when would we know when it was eradicated? I have no symptoms, just lots of scars and more to come (two more dysplastic coming off next week). Will the cure be worse than the disease? Is it worth it?

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Hcates's picture
Replies 2
Last reply 3/28/2014 - 12:02am
Replies by: jahendry12, vivian

Hi, 

I'm new here.  I just found out on Tuesday that a mole I had biopsied is melanoma.  It's .3mm deep so caught very early.  I attribute this to my great dermatologist and my annual mole scans.  I am a 11 year lymphoma survivor and am wondering, do I have a greater risk of melanoma infiltrating my lymph system than someone who has never had lymphoma?  I'm thinking more of in the future, if another spot turns up and is deeper.  I'm sorry if my terminology or understanding of this cancer is incorrect, I'm still reading up on it.

Thanks for any advice,

Heather

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/28/2014 - 6:19am
Replies by: tschmith, BrianP

My turn has finally arrived.  I'm participating in the "Phase I/II Study of the Treatment of Metastatic cancer that Expresses MAGE-A3 Using Lymphodepleting Conditioning Followed by Infusion of HLA-DP0401/0402 Restricted Anti-Mage-A3 TCR-gene Engineered Lymphocytes and Aldesleukin".  

I'll let you know how it goes!  Chemo begins tomorrow. Cells introduced on April 4th with IL2.

Terrie

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evleye's picture
Replies 7
Last reply 3/29/2014 - 5:20pm
Replies by: Anonymous, evleye, dellriol, Patina, hbecker

I am stage IV melanoma and papillary thyroid cancer.  I have mets to ovary and breast.  I am having total thyroidectomy on Tuesday and follow with yet to be determined clinical trial.  I have two children aged 16 and 10 and they know what is going on but in a super upbeat no big deal kind of way (I was stage I 8 years ago so they know I've had this before).  I am struggling with telling people.  I am torn between wanting people to know and not burdening them with knowing.  I fear that people will treat me differently.  On the other hand, do other people have the "right" to know?  I have informed my younger child's school and my husband's job but I haven't told my siblings.  In the world of social media, I have no idea how to break the news.

 

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Anonymous's picture
Anonymous
Replies 0

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/27/2014 - 8:57pm
Replies by: JoshF

I have been hearing about about a complete response and partial response to ipi. Does complete response mean remission and is it forever?

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HelenQLD's picture
Replies 6
Last reply 3/29/2014 - 8:44pm

Mum lost her battle at 7.20pm on 27/3/2014 at home after fighting the black beast for six months after finding out her stage iv diagnosis. 

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out4air's picture
Replies 2
Last reply 3/28/2014 - 10:14am
Replies by: Anonymous

Many, many people need this drug that cannot get into a clinical trial including my husband.

 

 
 
We are in it to win it!

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Leslie'sHusband's picture
Replies 5
Last reply 3/30/2014 - 5:36pm

Les and I are heading to Duke on Monday morning for a consult with Dr. Tyler.  I know that we are going to discuss the clinical trial "Feasibility and Safety of Minimally Invasive Inguinal Lymph Node Dissection in Patients with Melanoma".  Based on conversations with our local surgical oncologist, the "normal" surgery sounds pretty involved for an outpatient surgery.  Moving a muscle, or at least part of a muscle, to cover exposed major blood vessels sounds a little bit on the "involved" side to us.  Les wants to do whatever it takes to make sure that this cancer is out of her body, though. 

We are also going to ask about the E1609 trial as well, though I will admit that I don't like the statistics I'm seeing on the Interferon success rates.  Interferon was the only treatment offered locally.

Any advice on what questions to ask would be greatly appreciated.

 

David

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