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.

Expand/ Collapse Topic
 
Replies By
View Topic

Ken Burns has a documentary film based on the book “Cancer, The Emperor of All Maladies”

http://cancerfilms.org/

It will be on PBS March 30, 31 and April 1 at 8:00 pm (CT).

Login or register to post replies.

dmk252003's picture
Replies 5
Last reply 3/26/2015 - 6:06am

Sadly my mom past away on the 16th.

We are not sure if she passed away from misuse of Fentanyl patch or heart problems. We chose not to do an autopsy.

Please, if anyone here is using Fentanyl patch for pain, use with care.

May God be with all of you

Donna

Login or register to post replies.

Aundrea's picture
Replies 11
Last reply 3/27/2015 - 4:18pm

For those of you who are NED survivors, I would just like to see some statistics.  Make it short and sweet.  My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks.  We know he will get one or the other.  So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum! 

List: 

Diagnoses date 

Stage 

How long NED 

What treatment used 

Login or register to post replies.

MariaBailey's picture
Replies 6
Last reply 3/25/2015 - 1:14pm
Replies by: arthurjedi007, MariaBailey, mary1233, Anonymous

My Mom was diagnosed in October 2014 with Mucosal Melanoma of the Nasal Cavity. She had surgery to remove the small tumor, half her pallate, part of her cheek bone, half her jaw and her lymph nodes from her neck. Then had radiation 35 treatments. The doctor told her that he believes he got all of it but this is a very sneaky cancer. Well in December her side hurt and she had a x-ray. They found a mass on her bone. With a byopsy they found the mucosal melanoma spread. She does not have any of the protein variations so they have her on Yervoy. Has anyone had this and if so what other treatments are there? I have been doing research but it seems all the treatments that are working very well deal with the variation of the proteins (BRAF, NRAS, and Kit). This is making me nervous and I am trying to find out other treatments to help my mom live a long full life. Thank you

Login or register to post replies.

cheryl913's picture
Replies 9
Last reply 3/26/2015 - 2:10pm
Replies by: Anonymous, cheryl913, Linny, SABKLYN

I had a radical axillay lymph node dissection done after my wide incision that disfigured a tattooed portrait I have of my daughter on my right arm. I have been NED for over a year and no lymphedema. Now I'm wanting to have the tattoo fixed, but I am very nervous that it will cause lymphedema. At the same time I don't want to stay disfigured. Can anyone offer real life experience with this other than" it's not a good idea".

Login or register to post replies.

Cathy.Welch46's picture
Replies 5
Last reply 3/27/2015 - 4:58am

has anyone else had to experience this and what treatments have you tried.  Do you know someone who had and did not  make it? 

Stage IV for five years now.  Enjoying life to the fullest

Cathy

Login or register to post replies.

AZ_Gal's picture
Replies 2
Last reply 3/24/2015 - 1:55pm
Replies by: Anonymous, ldub

I had my first primary removed august 5th 2013, and have been cancer free ever since. Supposed to have skin checks every 6 months, but I slack on them terribly. They kinda suck and are embarrasing, for me anyway...maybe it was just my dr.
Anyway, even though I slack on seeing the derm, my hubby checks my body for moles regularly.
Two nights ago he said the words I never wanted to hear...you have two new moles (near my original primary less than 6in away) and one looks asymmetrical and is two different colors. My kids are home on spring break for another week, but I'm going to try and get into the dr when they go back to school, but please tell me I'm panicking for no reason and that everything is fine. i know it may not be but I need reassuring words...this time is really bothering me, and has my stomach in knots.

Thanks guys.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 3/24/2015 - 1:15pm
Replies by: Kathy himes, dvd

Hi. My wife has started treatment and after one cycle her liver enzymes have shot up. Has anyone gone through this?. Thanks, Doug

Login or register to post replies.

BrianP's picture
Replies 1
Last reply 3/26/2015 - 9:19pm
Replies by: jahendry12

Thought this was kinda interesting and gives some more thoughts on why combo therapies will probably be the future for treatments.

 

http://www.npr.org/blogs/health/2015/03/23/394132747/why-the-war-on-canc...

Login or register to post replies.

ashlee12's picture
Replies 1
Last reply 3/24/2015 - 1:45am
Replies by: Janner

So I have this mole o have been watching since about December... It is small but kinda a weird shape... Well I have started taking pictures of it back in January so I have about three pictures of it ... Tonight I showed my friend who is going to be a nurse and I also showed her the pictures ....she told me that it is weird and I should have it looked at because it has changed slightly .... Well now I'm kinda freaked out I mean I am gonna call tomorrow but like now I'm having racing thoughts about cancer again and like even tho it's small what if it is a staged cancer this timw like a stage 2 or something idk I'm just scared 

Login or register to post replies.

mizmena's picture
Replies 7
Last reply 3/25/2015 - 9:38am

I am newly diagnosed and all this terminology is another language for me...please can anyone help me understand. I had a shave biopsy done of a growing mole on my chest thats what this path report is. Today i did another biopsy of my lymph node under my arm waiting on those results. My lymph node is indeed abnormal via ultrasound w/ a 5.8 cm mass.

 

 

Login or register to post replies.

Leslie'sHusband's picture
Replies 3
Last reply 3/23/2015 - 9:28pm
Replies by: JoshF, Jubes, yazziemac

It's been a while since I've even been on this forum, let alone post, so I thought I'd post an update.  For those who may not remember, my wife Leslie was diagnosed with melanoma (ended up being 3b) on her left thigh, with the sentinal lymph node testing positive in Feb of '14.  After three surgeries, the last being a complete lymph node dissection of the left groin area done at Duke Cancer Center in April '14, she's doing well.  None of the additional nodes removed tested positive.  She had CT scans done in September '14, and last week, at Duke.  Both were clear, with no evidence of melanoma.  There is a lesion on her liver that caused a little concern back in September, but it was determined to be benign after a closer MRI of the area.  The docs said it is likely caused by hormones in birth control pills and is very common, nothing to be concerned about.  That lesion was unchanged in last weeks scan.  We will be heading to Duke every 6 months for further scans for at least the next four years.  I'm guessing that this means 1 year NED.

Dave

Login or register to post replies.

barbudo2005's picture
Replies 11
Last reply 3/26/2015 - 9:13pm
Replies by: Squash, barbudo2005, arthurjedi007, Anonymous

Is there a healthy way I can gain weight?

Squash - (2/28/2015 - 7:08pm)

You can eat all the food you like but if you have faulty protein metabolism which is common in cancer patients then you wont put on weight.

You need to start taking digestive enzymes e.g. porcine pancreatic enzymes and you need to take high doses of them.

I couldnt put on any weight after losing 10kgs and going from 84kgs to 73kgs. In the last three months without changing diet i have put back on 6kgs taking high doses of pancreatic enzymes. I take 60 a day. 10 caps 1 hour before meals and 10 caps in between meals.

 

Hi, Squash

I am on zelboraf for 12 months and I've lost 12 kilos. I went from 73 to 61, thats 1 kilo for month!!!!

I read your post and it make a lot of sense. If you read what is Zelboraf is B-Raf enzyme inhibitor  so I think it may inhibits all kinds of enzymes.

You say you take 10 caps. What does that mean in terms of units of lipase? For example, Creon 10000 has 10000 units of lipase.

Thank you!

Login or register to post replies.

yazziemac's picture
Replies 7
Last reply 3/23/2015 - 10:48am

Hi all

I've posted several times previously--my husband is Stage 4, multiple mets, currently on Yervoy.  I am struggling severely with not knowing the future.  I don't expect anyone here to tell me what the future holds, because no one knows!  But, if I could have any help in how to  manage this "land of limbo", I would really appreciate it.  I try to live one day at a time, but I'm finding it very hard.  Does Pete (my husband) have only months to live? 2 years?  5 years?  No one knows...But I have to make decisions about my career (I recently decided to take a leave from my job), and I feel the need to wrap my head around what my life is going to be like going forward.  But, it seems that I can't do that because it's a big grey area (that's how Canadians spell grey, haha).  Are these treatments "buying time" and that's the best we can hope for?  Is there a chance this cancer could be cured?  What are we really and honestly dealing with??  These are the questions that I go to sleep with and wake up with--no answers to be found.  Thanks for any insight on this!

Yasmin

Login or register to post replies.

Andiuta's picture
Replies 4
Last reply 3/23/2015 - 7:43am
Replies by: Andiuta, ldub, _Paul_, SABKLYN

Hello! I have a mole that has become raised (it was flat before) and has two shades of brown and also 2 black spots. I noticed these changes one year ago but I didn't get to go to a doctor. I am really worried but at the same time I am afraid to go and get diagnosed. Is there anyone here that had the same symptoms and was diagnosed with melanoma?

Andiuta

Login or register to post replies.

Pages