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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Golda_'s picture
Replies 2
Last reply 1/14/2014 - 2:43am
Replies by: Golda_, GAngel
Hello all!
Friends , we need your advice.
As I said , we are self-treatment my Mom. In our city treated melanoma still with chemotherapy.
Mom started taking Zelboraf with November 2013 . Had a lot of side effects. After 5 weeks of treatment ( 8 tablets , then 6 , then 4 ) mom took a break of 12 days. It seemed to her that the tumor began to grow. Then again began to accept : a few days 8 tablets , 6 ... 4 ... After 18 days of receiving again took a break ...
Swollen hands . Under the skin on the palms have air bubbles as the after burn . Mom does not go out into the street. Fell eyebrows and hair began to fall .
I read a lot about taking Zelborafa with pauses . 4 weeks + 2 week break . 4 weeks &4 weeks .
Does anyone have experience of receiving it Zelborafa with pauses ? Share your story !
Can 8 tablets is too much weight to 62 kg = 137 lbs?
Reading the forum , there was one more question: When you receive combo drugs are taken without pause?
Who first took Zelboraf and then Combo - why you switched to a combo ?
 
Thank you!

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Julie in SoCal's picture
Replies 5
Last reply 1/14/2014 - 7:24am

Hi there Friends!

I'll be starting ippi this coming Wed (15 Jan).  I will be listening to my Dr and communicating well with them, have you all learned any tips or tricks for getting through this?  What is the general knowledge?  Advice? 

Thanks!

Julie

Stage 4  (TXN2cM1a)-- WLE, SNB, LND, HD-INF, GM-CSF, (intransits) IPI, (intransits) PEMBRO. Currently NERD!

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Michelem's picture
Replies 14
Last reply 1/14/2014 - 10:40pm
Replies by: POW, Lil0909, Michelem, kylez, Anonymous, BrianP, JerryfromFauq

My husband has just had his second surgery to remove more lymph nodes from the groin area. He had surgery on a melanoma of his foot and cancerous lymph glands removed in October. He was being screened for a randomized interferon/ipi clinical trial, but the PET scan lit up, leading to this new surgery. Surgeon found that the cancer was more extensive in additional nodes and groin area than anticipated.

At this point, I am uncertain if we are still Stage III, or if this is now considered Stage IV.

We are in Sacramento. Our surgical ocologist has now said it's time for us to see a doc in San Francisco. I see that there are several "melanoma clinics" in SF, but are these considered to be "centers of excellence" for melanoma?  We are likely to be referred to a melanoma specialist at California Pacific Medical Center. It is hard for me to tell if this is truly considered a "center of excellence" for melanoma - can anyone please advise?

A complication for us is that these operations have left my husband with severe lymphedema of the leg, so getting on an airplane to get to a more distant clinic would be problematic.

Thanks for your thoughts! 

MicheleM

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jmccay's picture
Replies 4
Last reply 1/15/2014 - 7:36am
Replies by: POW, jmccay, Janner

Hi Team,

My mother is meeting with Docs next week (Jan 17) with the option to start ipi / Yervoy.

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  She is 73 so this treatment is the only option.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!
James

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LKN Captain's picture
Replies 5
Last reply 1/15/2014 - 2:17pm

Just diagnosed Friday, melanoma in situ in my right shoulder. Shave biopsy.

A little background; I'm 28 years old, sum worshipper all my life. I spend summer on my boat or riding my jet ski. Never was a fan of sunblock despite my wife always nagging at me about it. Last summer she noticed a few spots on my back and one on my shoulder that she didn't like. As a typical walking specimen of testosterone, I declined to see a Dr. I've always put up a huge fight about going because I just don't like to see a doctor and be told what to do. The company I work for demanded that we all get routine physicals if we want them to post for our insurance. My wife finally had the leverage to get me to go and show them the coupe of moles.

The doc examined the moles and said, These over here look completely normal, this one on your shoulder is very small, but I do not like it." It was smaller than a quarter of an inch.

He took a shave biopsy (which I am now reading isn't the greatest) and confirmed it is in fact melanoma. He gave me the results a day and a half after the biopsy on his day off. We really appreciate that. He referred me to someone down the hall that has 23 years experience in working with this and is a dermatologist/dermotopathologist or whatever, whom will be doing a wide local excision in two days from today.

His original diagnosis was in situ stage 0. He added that it was caught early and this will not kill me, just leave a scar and so fourth.

Coming to find out staging is very difficult if a shave biopsy is done and I'm wondering why they would specify if it is unknown.. Probably to keep me sane until the procedure is done? I nearly lost consciousness having the biopsy because I looked at what he was doing. I've never passed out sober before, I just became very confused and couldn't hear him talking to me, then the nurse ran in and the lights went dim.

Any questions I should ask on Wednesday when I get my shoulder whittled on?

Thanks in advance.

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2014 - 2:20pm

I recently had my 2nd melanoma removed.  The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear.  My official diagnosis statis is "Stage 1B (T2a NO MO) 

I wanted to find out what the standard protocol is for both imaging tests (PET, etc.) as well as treatment protocols others are using. 

I fully appreciate that, at this point, I am considered early stage...and I am profoundly thankful for that.  But given that I have now had "2" primaries, I would sleep better if I were given a PET scan or something to put my mind at ease!

Thoughts....experiences???

Tricia Chappell - Chesapeake, VA

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WendyD.'s picture
Replies 0

I am still waiting for the derm to reread my original biopsy for the melanoma. 

In God I Trustsmiley!

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ciphillips's picture
Replies 2
Last reply 1/15/2014 - 3:46pm
Replies by: Phil S, JerryfromFauq

My wife had vaginal mucosal melanoma.  Treated with surgery and 3 rounds of Bio-Chemo at MD Anderson.  It now appears she may have a met to the lung.  Genetically her tumor is NRAS mutation, WT for BRAF.

I am looking for alternatives for treatment under the following circumstances:  the tumor is not surgically recetible or if it is for adjuvant treatment. 

I would also be interested in Clinical Trials.

thank you

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Replies by: Anonymous, Cooper, POW, pd1gal

Hello all,

I represent Cancer Commons, a nonprofit partner of the MRF. We aim to give patients the information they need to make the best possible treatment decisions with their care team. As part of our efforts, we're co-hosting a special program for patients and advocates at the 2014 Personalized Medicine World Conference in Silicon Valley, CA, Jan 27-28.

If you are curious about how things like molecular testing and targeted therapy are changing the treatment option landscape for patients, please join us! You will be able to learn about and discuss these and other personalized medicine topics with other patients, advocates, doctors and researchers.

Registration is available at a generously discounted fee ($100 down from $1500). Learn more about the program, topics and speakers here: http://2014sv.pmwcintl.com/patients1.php

Happy to answer any questions!

Sarah - Associate Editor at Cancer Commons

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BrianP's picture
Replies 3
Last reply 1/15/2014 - 4:46pm
Replies by: Anonymous, JerryfromFauq, arthurjedi007

This is a video from Jun 13 that I stumbled upon tonight.  I hadn't seen it posted on here before and thought it was a pretty good overview of immunotherapy by Dr. Wolchok.

http://www.youtube.com/watch?v=o89zA1TDBJA

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Replies by: Janner

Ok, First I will say that my last two biopsy came back as just moles. Praise The Lord!!!!! :) But my question is concerning my WLE for the melanoma I had. The Derm had said something about the margins may be inadequate and I might have Mohs Surgery. Well Dr. Chung looked at the report for the WLE and didn't see any reason for further surgery. But as I look at my path report it doesn't seem to have been the appropriate margins cut out. I will tell what the report says and my question is should I get a second opinion? I want everything done right, including correct margins.

Diagnosis:

Skin,Chest,Excision

Negative for residual melanocytic lesion

Comments: After discussion with the patient, the site of this biopsy is the previous site where a malignant melanoma lesion was removed. Immunostains S100 and melan A red fail to demonstrate a melanocytic lesion in this case. This case was received and reviewed by dermatopathologists Jaweed Ansari MD.

 

Gross Description:

The specimen is recieved in formalin in a container labeled (my name), chest and consists of an ellipse of skin measuring 1.9 x 0.4cm with 0.4 cm underlying tissue. Prior to sectioning, the margins are inked blue and one tip is additionally inked orange. The specimen is serially sectioned and entirely submitted.

Thanks for the input! :)

In God I Trustsmiley!

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Charlie S's picture
Replies 7
Last reply 1/15/2014 - 6:59pm

Yeah, yeah, I know I am a pain in the butt.......................but; after many years here and with the latest "re-launch" of this website, , it is quite apparent that there are major security flaws, so be carefull.

Today, I received six e-mails,all of which came from "tor" sites via MRF.

For those unfamiliar with  a "tor" browser , the object is to disguise and misdirect.

Given the makeup of the new MRF Board,  it is dissapointing this would happen.

Whats up Tim?

If you like, I have a packet capture of the trail if you like.

Regardless, this site has been compromised and I do not like it.

Charlie S

 

 

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amelanotic eric's picture
Replies 2
Last reply 1/15/2014 - 7:58pm
Replies by: Anonymous, Richard_K

I was diagnosed as Stage 2B nodular melanoma on Halloween (no treats for me - only tricks!) and have completed the whilwind of PET scans, surgery, etc.  I am a 53 year-old male living in northern Connecticut and was hoping to find an in-person support group where I could meet others on this same journey.  I was kinda hoping to find a cancer buddy that I could sit down and have a cup of coffee with.  Do such groups exist?       

Thanks, 

Eric

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/15/2014 - 8:47pm
Replies by: Kimmer

any recommendations for the paleo diet?

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JoshF's picture
Replies 10
Last reply 1/15/2014 - 10:55pm

Finished yervoy Dec 9... Scan on December 20th showed no progression and doc said she wouldn't even be concerned about lung nodule as it was a shadow and the obvious prior knowledge of tumor. Felt it was very encouraging news. So had a nice Christmas break with kids and went into hospital Jan 6 to start HD IL-2. Did 11 bags... Couldn't get last one in Friday...couldn't get urine output. 

Anyway, feeling a bit better but wow feel like I've been run over by train. 27lbs of fluid retention... Scary. My dad took pic on day 1 and last day...wow. Hardest thing is not being able to sleep well. If I could I think I'd feel 1000% better. Cold feet, get chills... General flu like feeling. Not looking forward to next week in terms if dealing with side effects but looking forward to getting on with it. I wish complete response rate was better for patients.... This drug is high price to pay.

 

Josh

Let's work for better treatments....for a cure!!!!

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