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
Anonymous
Replies 3
Last reply 9/18/2014 - 5:34pm

I'm very confused as I've been diagnosed stage 4 with lung metastasis. I have low tumor burden and my oncologist feels that if ipi or if needed PD1 works, that can be "cured". I thought it was incurable. I know these are new treatments but what is reality?

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

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EricNJill's picture
Replies 4
Last reply 9/16/2014 - 10:22pm
Replies by: Bubbles, EricNJill, Fen

I'm sure most of you here don't remember me.  It's been a long time since I've been on this forum.  My husband, Eric, passed from Melanoma in August, 2011.  I've still been active in the community and I wanted to share with you an opportunity to earn $225 for a one hour survey.  When Eric was alive he did a survey with this company so I know that it is completely legitament.  So that you know I'm legit I'm sending you a link to a story that was done on my late husband and I with The Skin Cancer Foundation.  http://skincancer.epubxp.com/t/17089/53

RC Horowitz & Company Inc., Marketing Research is trying to spread the word: They are looking for patients that have been diagnosed with Metastatic Melanoma to participate in a confidential market research interview. You must be currently taking Zelboraf in order to qualify. Those that qualify and participate will be paid $225 for a 1 hour telephone. Please contact this number if you are interested in participating.  Be sure to tell them that Jill Judd referred you.  Contact Jane Walker or Raina Abramson at 888-392-5000

Hurry, I think they will only have this opportunity open a couple of days. 

Good Luck!

 

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eturner's picture
Replies 2
Last reply 9/17/2014 - 9:58am
Replies by: eturner, arthurjedi007

Hey guys my question for today is.... What is the best treatment for numerous bones mets? My husband has tried IL-2 and Braf combo, now he has had first dose of IPI (have to IPI in order to get PD-1 ). How does PD-1 seem to be working on bone mets. Does anything else out there look promicing?  Also since my husband has failed the braf combo drug, which just stopped bone mets growth for about five months does that mean those bone mets will start growing again??

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Teri in Dayton's picture
Replies 6
Last reply 9/20/2014 - 3:15am
Replies by: MissyT, Squash, Melissag0624, Anonymous, gaby

I was diagnoised  stage IIIa/b in August 2014.  I'm looking for any information or advice from anyone using pegylated interferon, Sylatron. It has been recommended by my Oncologist. Thanks for your time.

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Cat's picture
Replies 3
Last reply 9/17/2014 - 10:53am
Replies by: Cat, Marianne quinn, Anonymous

Hi All,

For those who are not familiar with MRF nurse support, if you have a specific, more medically based question, you can submit your question to the MRF nurse by emailing askanurse@melanoma.org. You can expect to receive a personalized answer from MRF experienced nurse within 72 hours.

I recently emailed Nurse Katherine,a question about a side effect that I was having on Merck anit -pd1. She answered my question in a timely manner and her answer was very thoughtful. She even took the time to see if there was any new research regarding my side effect.

I was very impressed with Nurse Katherine's answer to my question so I just wanted to make sure others know about this  "ASK A Nurse" Support.

Tim and Shelly, thank you for this opportunity you have given us to talk to a nurse.  I think that Nurse Katherine is very professional,knowledgeable and caring. Nurse Katherine is truly an asset to the MRF Team.

Thanks,

Cat

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magnus31's picture
Replies 3
Last reply 9/16/2014 - 9:06pm
Replies by: Mat, Ed Williams, JoshF

Dear all,

We all probably once believed that cancer would not hit ourselves but instead unfortunate others. Yet here you are, reading this post. And yet here I am, after having browsed through hundreds of messages posted in this forum over the course of the years, posting my very first message on this melanoma forum.

I was diagnosed with IIIA melanoma on my upper right arm in late 2012 at the age of 29. Luckily, only my sentinel node showed signs of disease after a lymph node dissection in my right armpit. Twelve months of Interferon treatment and close monitoring followed with no signs of recurrence.

But that was until April 2014 when a regular CT scan identified a few millimetric nodules in both lungs. A follow-up scan in July 2014 revealed little change in these. My oncologists still recommended a lung biopsy to identify the nature of these nodules. This biopsy was carried out last week for which I shall expect results in three days.

So, here I am. Still young. So much I want to do in life. Feeling fit. But nervous. And tense. Trying to balance fear with rationality. Keeping my family and friends unaware for fear of over-reactions. Trying to understand what a potential transition to Stage IV really means.

How did you guys deal with taking the step from stage III to stage IV? How should I go about understanding which are my possible treatment options? How do you handle living with a stage IV diagnosis? 

Thanks all,

Magnus

 

 

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odonoghue80's picture
Replies 5
Last reply 10/21/2014 - 10:39pm

Hi there,

i have a tumor in my groin that has been growing out of control, and is extremely painful. It is the size larger than a softball and is so painful I can't walk. Last week, my doctors postponed getting the TIL therapy at the NIH, and my local oncologist agreed.

So this week I am starting on chemo and radiation the following week. I'm not sure what to expect from the chemo (carbo/taxol). It will be an infusion for 4.5 hours, every 3 weeks. Has anybody had experience with this chemo. We are hopeful this can shrink the tumor and give me some relief. 

As for the radiation, I have no idea what to expect of it, or how it is administered? I have experience with SRS radiation to the brain, but has anybody have experience with a targeted radiation therapy to the body? If anybody can share some thoughts please let me know. 

Thanks,

Shane

 

 

 

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arthurjedi007's picture
Replies 9
Last reply 9/15/2014 - 11:35am

MC1371 Targeted Complex Therapy for Advanced Melanoma: Nab-paclitaxel (Abraxane)/Bevacizumab Complex (AB-Complex).

Basically my Mayo doc wants to try to get me into this if the pd1 does not stop the rest of my tumors from growing. Although pd1 via the first scan either stopped or shrank everything except for 5 tumors which 3 I'm having radiation done on. In a few weeks we will rescan.

So far what I've read about this stuff does not look like it is very affective on other cancers let alone melanoma. So I'm thinking my plan B should still be TIL but I thought I would ask. Maybe I'm missing something.

Thanks.

Artie

 

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Laura123's picture
Replies 5
Last reply 9/15/2014 - 3:53am

Hi there, 

 

firstly, thank you to anyone reading this..

For the past 5 months I have had a continuously growing mole on my arm. It has forever been a pin prick of a flat mole but in April it raised and grew very quickly, it then went pitch black and after two weeks returned to normal colour and has got higher and wider. It is only 5m wide and 2m high but I have never had a mole change like this and I have a lot of moles. 

i got referred to the hospital over three months ago, although they firstly lost the referral, then after sending a second one they put me under a non-urgent as it doesn't have an irregular border. 

in the period of the three month wait the mole has changed a lot. It's tiny (less than 1cm) which is why they are not taking it seriously, but I know myself, and I really don't think it's good. 

I'm going to another doctor tomorrow morning and all I want is for them to just cut it out. 

my question to you is, if it is nodular melanoma and had been growing for six months, could it be life threatening? I also have a lump on my head and two rIsed solid lymph nodes which I've been told via a ultrasound scan is nothing. 

I would be greatful for any advice as you certainly seem to know more than any GP I've seen. 

sorry for the post being so long. And thank you very much for any answers received. 

 

Laura

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MissyT's picture
Replies 2
Last reply 9/14/2014 - 1:17pm
Replies by: Anonymous, Squash

Lately, I've been hearing about essential oils and the amazing health benefits of them, for nearly any ailment, sickness or disease.  And for treating melanoma, Frankincense is repeatedly mentioned.  Various sources tout the benefits of this oil in killing the cancerous cells at the molecular level when applied topically to the affected area.  Has anyone ever heard of this?  Or tried it?  The case studies I've researched & the testimonies I've found sound too good to be true.

Here are a few of the articles I found.

http://heritageessentialoils.com/cancer-of-skin.php

http://www.everythingessential.me/HealthConcerns/SkinCancer.html#page=pa...

Regardless, I ordered a bottle of Sacred Frankincense from Native American Nutritionals and plan to test it on the effectiveness of making moles, skin tags, etc go away.  

I'd love to hear any info or advice anyone else has on essential oils, their best uses for treating melanoma, and otherwise. 

My Hubby decided to forgoe immunotheraphy, after consulting with Dr. Amin in Clt.  We feel great about that decision.

 

My husband Ben, 34, was diagnosed as Stage 3A in May 2014.

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I've noticed lots of mentions and dermatology/pathology referrals to Dr. Boris Bastian at UCSF. (I notice them because I'm seen there.) Saw this short writeup on him today (about 3/4 of the way down).  

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/13/2014 - 8:08am
Replies by: Anonymous

Hello,

My dad has just been diagnosed stage 5 we are stil waiting to hear what we do next. Whatever happens I always think you need a second opinion. We live in the UK - can anyone recommend any specialists?

 

thank you

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Anonymous's picture
Anonymous
Replies 14
Last reply 9/15/2014 - 10:34am

I am a stage 4 patient and diagnosed in Jan 2014
2014. I have mets in my brain, liver and spleen

I have already failed vem and wbtand new treatment has a10 percentage of working
Apparently immunotherapy will take too long to work.therefore just feel lost and lost all hope

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fucancer44's picture
Replies 2
Last reply 9/12/2014 - 5:12pm
Replies by: arthurjedi007, RJoeyB

We are looking for clinical trials to get my brother-in-law into for his Stage 4 Melanoma treatment. All of the trials we are finding say he has to have a "measurable lesion." He hs 3 lesions: one on his femur, one on his L2 vertebrae, and one on his 5th rib. They are all approximately 3/4 of an inch in size. So the main question here is: can bone mets actually be considered "measureable?" I have heard both yes and no. 

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Julie in SoCal's picture
Replies 9
Last reply 9/12/2014 - 4:57pm

Hi Friends!

Do the happy dance with me!  I had scans this week and just wanted to post and say that I am still NED (or NERD- no evidence of recurring disease)!

Late last year had 5 rice grain to marble sized in transit mets pop up on my upper arm after 5 years of being NED. I had all 4 doses of Ipi with a predictable combination of side effects (headache, pituitary problems, flu like symptoms and arthritis like symptoms), but I watched each met melt away.  Ipi has been a homerun for me!

I know this isn't true for everyone here, but I wanted to post this as encouragement to others.  

Gratefully,

Julie

Stage 3c, WLE, SNB, LND, HD-INF, GM-CSF, IPI.

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