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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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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Anonymous's picture
Anonymous
Replies 8
Last reply 9/14/2014 - 5:15pm
Replies by: Ginger8888, Anonymous, grandtulba, fortiz, arthurjedi007

Hi All, 

Ipi price is very high for me, is there any way can i  get it  cheaper ? im from Cairo - Egypt 

Please Advice 

Thanks  Again 

Ahmed Mukhtar

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scragfinch's picture
Replies 20
Last reply 9/28/2014 - 1:23pm

Hello everyone. I'm new and would like some advice. I live in the uk. I was diagnosed with melanoma on my knee at the beginning of September. When I received the diagnosis from my dermatologist I was in shock. He said he would do a wle. I didn't know what to ask and just wanted to get out of there. The dermatologist said it was thin and that 95 percent of people he sees are ok. I went home and did some research.

When I went back for the wle I found out breslow depth was 1.38 with mitotic rate 1. I asked about sentinel node biopsy and he said it would give no advantage and he felt nothing in my lymph nodes. I get the results of the wle in 3 weeks. Both my parents had cancer. My dad died of lung cancer which spread to his brain in 2012 so I have seen what a terrible disease it is. Back then I had to fight for his diagnosis (they wouldn't do a scan) and aggressive treatment. Do you think I should get a second opinion now and push for scans and blood tests? I want to do everything I can. I'm 34.

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DZnDef's picture
Replies 9
Last reply 9/20/2014 - 12:42am
I had a fresh set of CT scans done yesterday and reviewed them with the oncologist in the afternoon.
 
Dr. O'Day walks in and says "Good news.  You've had barely measurable growth on two nodes no growth on the others and no new metastases".  He then turned to his colleague and said "her immune system is keeping her cancer in check".   He doesn't want to see me for another 4 months.
 
I see my Naturopath next week.  We'll see what tweaks she suggests to my approach.  My next review, I want Dr. O'Day to say none of them grew (dare I hope for shrinkage?)
 
I'm very happy with these results.  As far as I'm concerned, the existing cancer is welcome to stay right where it is and serve as a physical reminder for me to keep my new healthy habits.  As long as it stays put.
 
If it does continue to grow (he said it could easily double in size before it would cause me any problems) I will at that time begin whatever is the best available medical treatment (Ipi, Anti-PD1, Anti-PD1L, BRAF combo, etc).
 
I would like to point out that I discovered my disease accidentally via chest x-ray, not because I was having symptoms.  And although it is Stage IV unknown primary (it is in my lungs) it is an "early" stage IV.  Which begs the question:  Is the slow rate of growth due to the lifestyle changes I have made or is it merely the normal rate of the disease when it is this early?  There is no way to know for certain.  I choose to believe my lifestyle changes are playing an important role but even if I am wrong, it has allowed me to enjoy a quality of life far superior to what I was living before and the drugs will still be there for me should I need them.
 
I am counting my blessings.  I hope this post finds you all feeling well.
Maggie

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Debra Cannon's picture
Replies 2
Last reply 9/10/2014 - 10:09pm
Replies by: BrianP, Bubbles

Anyone with Stage II b getting immunotherapies or other types of adjuvant therapeis after tumor removal and sentinel lymph node biopsy?

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Bristol-Myers Sues Merck of Patent Infringement on Keytruda
Zacks.com - 1 day ago Merck said the lawsuit was without merit and that the company was confident it wouldn't be prevented from marketing pembrolizumab. Similar patent litigation among the companies is under way in Europe.

Merck said in an August filing to the U.S. Securities and Exchange Commission that the Ono patent was invalid.

http://online.wsj.com/articles/bristol-myers-ono-suing-merck-over-cancer-drug-patent-1410101449

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/11/2014 - 12:39am
Replies by: kylez, Anonymous

Hi can anyone tell me what treatment they Are on for their brain mets? Already been told that vem and wbr have failed. Also srs wont work cos location of mets. Therefore do I have any other options to use? Heard it will take to Long for ipi to work

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newmanmark's picture
Replies 6
Last reply 9/14/2014 - 9:20pm
Replies by: Squash, newmanmark, DZnDef, kylez

Hello All,

I was diagnosed with stage 3C melanoma in Octoboer 2009.  I did all of the conventional treatment at that time.  In October of 2012 it returned to my pancreas.  It started at 2cm in size and is now 6cm.  It is at the head of the pancreas which makes surgery difficult.  They would have to do a whipple procedure.  I'm not sure that's where I want to go.

Since the original treatment I chose to go the alternative path and have done many therapies.  The melanoma hasn't spread any further but the tumour on the pancreas continues to grow.

I now have to make some decisions on how I will proceed.  I will likely have to try a BRAF inhibitor (I am BRAF positive) or do a clinical trial that involves a combination of BRAF inhibitors.  Anti-PD1 is only offered on compassionate use in Canada and I have to fail a BRAF inhibitor before they would give it to me.

I feel completely lost and am not sure what to do.  I'm looking for a little guidance.  I am 35 years old with 2 young daughters.  I have to continue fighting.

Cheers

Mark

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