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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arthurjedi007's picture
Replies 10
Last reply 3/31/2014 - 9:15am

Anyone know what dosage the EAP for MK-3475 is? I read as best I could understand the side affects were similar across all dosages so I was wondering if they would do the 10mg/kg or they would drop it to the 5 or 3mg/kg.

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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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Anonymous's picture
Anonymous
Replies 1
Last reply 3/30/2014 - 1:58pm
Replies by: Bubbles

Several months ago I was reading very enthusiastic reports about the Genentech drug attacking PD-L1 expressive tumors which were not rare situations.

I have not heard anything lately, and my oncologist did not even mention that route when discussing possible avenues for my mucosal melanom Braf wild type cancer - I have been in remission for more than a year so it is not a decision that needs to be made now.

Has anyone been following these studies - I have a feeling that the results have not been as encouraging as had been hoped but I can't find anything on the web that confirms this.

Thanks.

Mary

 

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Anonymous's picture
Replies 2
Last reply 3/30/2014 - 12:51pm
Replies by: Anonymous, mejiaufv

Hello everyone.....thsi is my first posting. I'm glad that I found this site. First, thank you and bless you all for being here and for your stories. I was diagnosed about a month ago, am going to have my lymph nodes removed under my arm on 3/23.....I've read all the studies on Chemo, Interferon...etc...What's the point of those treatments?

I'm a little scared and still dismayed with all of this....any advise, thoughts would be welcomed...

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geminilady30's picture
Replies 1
Last reply 3/29/2014 - 10:00pm
Replies by: Jwfd808

This is the first time I have used a forum like this so I hope ive done this right.

Im curious what the statistics are of melanoma recurring in the same spot

Stage 1 melanoma was excised and skin grafted in 2010. I know have a colourless mole the size of the eraser of a pencil on the inside edge of the scar. It itches, its raised, a little darker than the scar it sits on.

Looking for anyone with experience/knowledge with this.

I am booked with my family doc 4 days from now.

Tia

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My sister has Metastatic Melanoma diagnosed in November 2013 ~ she had numerous tumors / nodules all over her torso, spine, pelvic and ribs. She began taking Zelboraf the end of November and had great success for a few months. Four weeks ago she started finding knots re-appearing on her back and sides. Her oncologist did confirm that the Zelboraf has ran its run and is no longer as effective as hoped (5 1/2 months). He has now started her on the new approved combined drugs of Mekinist & Tafinlar (started today!) I was wondering if anyone has been through this process of taking the combined drug after taking Zelboraf and if so what are the thoughts of the success of this combination. I know it is newly approved and neither drug has been out of clinical trials very long ~ but we are just curious as to what we should expect. Her doctor told her at the "worse" prognosis would be weeks to a couple of months - "best" at a couple of years ~ but his thought of an "average" for her prognosis would be 6-9 months. Thank you for anyone that may have thoughts or experiences to share with this new chemotherapy!!!!! God Bless! 

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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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I am now six weeks out and healed from surgery, FEELING FINE! Clear PET/CT and MRI. I agreed to be reviewed for the Ipi vs. Interferon trial and got randomized into the 3 mg Ipi arm. I begin next week.

We are very happy to finally be moving forward with treatment, and relieved that I will be getting Ipi, but not too much ;-)

Of course, cue the worrying about side effects.

I've heard the first infusion generally goes well and that it is infusion #2 that triggers effects, if any. I just want to get started, and get this over with. Again, I shake my head that I FEEL FINE and now have to 'willingly' enter into something that will likely make me feel not fine...so that can hopefully feel fine for a lot longer.

Terra, Stage IIIB

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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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Ashley's picture
Replies 3
Last reply 3/29/2014 - 1:06pm
Replies by: Ashley, Gene_S, dvd

Hi Everyone,

My dad just started yervoy last week and last night had a crazy coughing attack.  He has lung mets but has not had any symptoms from the lungs before now.  Has anyone on Yervoy experienced this?  I'm hoping it's the drug working and causing a reaction and killing the mets!  Any thoughts?  I know probably too soon but I'm hoping!

Ashley

 

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dvd's picture
Replies 9
Last reply 3/29/2014 - 6:34am
Replies by: Anonymous, hbecker, dvd, Ashley, SBeattie

I've been lurking on this Board now and then for the past year, but it's about time I added something to it.

A quick recap of my situation: 66 year old caucasion male with extensive history of sun exposure. Superficial melanoma-in-situ removed from scalp 2006, clean margins, no further workup. Feb 2013 parotid tumor biopsy showed melanoma, otherwise negative PET. March 2013 parotidectomy, neck dissection, 1 of 32 nodes positive. April-May radiation to neck. November - tumor recurrence on neck incision scar, PET shows tumors in neck, leg, lungs, scalp. January 2014 start clinical trial of ipilumimab plus either nivolumab or placebo. Within weeks, all signs and symptoms from tumors resolve. Repeat CT yesterday, results pending.

Late 2013, when things were at their worst, I started writing down some of my thoughts - primarily for my own benefit, to be able to see and re-read what I had been thinking. I shared the blog site with family and a few friends, but don't really have an interest in promoting it. As the site has gained exposure, I have received feedback from some people that the blog helped them in their difficult times with their own challenges (not necessarily melanoma), so I thought I would post the site here, just in case it may be helpful for someone.

                                  daveschronicle.blogspot.com

 

 

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flvermonter's picture
Replies 9
Last reply 3/28/2014 - 6:45pm

I have not been on in awhile and was looking to update my profile.  My husband had stage iiic melanoma with surgeries last April.  He decided not to have chemo as no cancer present after radiation. He had open heart surgery Dec 2013.  A pet/ctscan showed no evidence of disease.  February he started having problems walking.  Blood test showed nothing, went to a neurologist who ordered an MRI of the brain. He called tonight to say there are 3 rumors on the brain.  So scared

We always look for the positive side of things, and know that the sun comes up each day no matter how bad a person may fee.

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Tim C's picture
Replies 3
Last reply 3/28/2014 - 2:43pm
Replies by: Janner, Anonymous

I had a 12mm spot on my back that was discovered during a routine physical exam and had it removed and biopsied by a reputable dermatologist.  The results came back as positive for melanoma.  I was assured it was caught early (it was .3mm deep).  I requested the pathology report but have yet to receive it.  The standard course of action was to excise the surrounding tissue (by a surgeon), which is scheduled for next week.  He would then see me back again in three months.

After perusing this website and others I've read about melanoma specialists, internal melanomas without skin lesions, in situ melanomas that have metasticized to internal organs.  So many questions arise.  The main questions are:  Am I following the correct treatment path?  Not intending to disrespect the dermatology profession, but should I be seeing a cancer specialist?  I'm not the type of person who likes to take a 'wait and see' approach.  Maybe some type of body scan in order just to be sure?  

I understand that my situation is not as dire as others in this forum, but I would appreciate the collective insight of people who have a lot more experience in the subject than I.

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/28/2014 - 2:32pm
Replies by: Janner, Anonymous, dellriol, POW

I am having such a problem with my oncologist at a reputable research facility. All questions are answered with one or two words, or no answer at all. I have tried everything I can to get a conversation going, but have gotten nowhere.

I don't think he realizes it, but the effect on me is cruelty - I have been trying to talk to him for a year and I can't get an answer on how I am doing or what might be ahead for me.

Does anyone have any suggestions.

Mary

ps I have a rare melanoma and it is difficult to find information on the web.

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