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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Kelly---11's picture
Replies 8
Last reply 7/5/2015 - 12:34pm
Replies by: Anonymous, las630, paz58, Bubbles, kpcollins31, Kelly---11, mary1233, Nicky

Hi guys 

hope every one is well! Iv been really struggling the last few days I watched one of my best friends get married at the weekend and was an amazing day, I now have got down as I can't even imagine getting married or having kids it's making me really sad. When does this get easier? I'm still so New to this and with new subq still popping up I am loosing faith and I don't want to be like this. What helps you guys? Xx

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I am wondering if anyone else had spindle cell melanoma?? It is hard to find any information on it. The mole Igad removed looked like any normal mole and i had had it for years. I was pregnant when I became concerned about it but noone else was. Once my son was 2 months old i made them take it and we dont have any accurate information. This was in Nov 2014. I am currently waiting for my 2nd opinion on my SLNB. First one was negative but I am worried because my original mole went from no mitosis to a mitotic rate of 3 (making me 1B)  with different opinions.so now i am worried something was missed :( any information on spindle cell melanoma would be greatly appreciated!!

Jenn

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Rita and Charles's picture
Replies 6
Last reply 7/1/2015 - 11:38pm
Replies by: Rita and Charles, Anonymous, Patina, Thandster, Ed Williams

Is this better than nivo or ipi ?

Rita

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Thumosity's picture
Replies 7
Last reply 7/1/2015 - 9:35pm
Replies by: Thumosity, Colleen66, Squash, Anonymous, Jubes

I was diagnosed(6/17/15) with Amelanotic melanoma on my left forearm.I have a Breslow thickness of at least 1.1 and at least a Clark's Level III.I will have a wide excision surgery on 7/13/15 with Sentinel node biopsy.Also I have Hemophilia Factor VIII so I'm a little more concerned about the surgery(I am definitely having the surgery!)and the potential wound issues.

My dermatologist said that she didn't have any major concerns when she biopsied the round eraser shaped/eraser colored growth on my arm(more of a cosmetic thing I guess)so it came as a pretty strong shock that it was melanoma!Thank God she did the biopsy.I guess until I know what stage I am I need to just chill...it's a little hard to relax right now.

 

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Rcmcd09's picture
Replies 2
Last reply 6/29/2015 - 5:31pm
Replies by: Janner, Rcmcd09

Hi there! I'm sad to say that in my college years I used tanning beds off and on for 3 years. I never tanned before, nor have I since then as I'm too busy. A few years ago I noticed a mole on the side of my foot. Because it's on rough skin it was hard to see the shape, but it looked symmetrical, wasn't changing and was one color. The size was within reason as well. I noticed a few days ago that one small dot of the mole has become darker brown - - change! I know that MANY moles on feet are dangerous as they're many times malignant melanoma. I'm catching the change pretty early, but can't get into my dermatologist for 1 month. I'm so nervous... Could it spread that fast before I can have it biopsied? My Grandpa grew up when sunscreen wasn't a big thing and he struggled with skin cancer for a long time. Thanks!

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Bubbles's picture
Replies 18
Last reply 7/4/2015 - 7:01pm

Hope all goes well with your treatments and treatment options this week!!!  You are such a gift to all of us.  Hang in there! Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/29/2015 - 9:43pm
Replies by: Bubbles, Anonymous, Ed Williams

Here is a link  about how cannabinoids could inhibits the growth of melanoma.

 

http://thejointblog.com/study-thc-inhibits-the-growth-of-melanoma/#more-...

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Hello all, we meet with our oncologist tomorrow to learn what route Charles will take, he is Stage 4, lung tumor and subcarinal lymph nodes. Also, they need to check activity on his right leg, perineum.  His brain MRI is scheduled next week.........

We have tried to hurry up the learning curve, met with differing doctors.  We have become familiar with Ipi and Nivo, Keytrudo.......but know nothing about the Tafinlar/ Mekinist combo..

Does anyone have insight about this combo? Is it an effective "combo alternative" since Ipi + Nivo is not approved yet?

Thanks Rita

Rita

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Jubes's picture
Replies 6
Last reply 6/30/2015 - 5:13pm
Replies by: Jubes, kylez, Kim K, LaurenE

Hi all

i am doing really well. All tumours have disappeared on keytruda except the main one in my lung which has shrunk from 7.9cm at its biggest to 3cm x 1cm now. Just had my pet and it is 4.2 SUV but was 10.2 SUV this time last year. I am on steroids for the side effects from the keytruda. I have really bad arthritis type pain through my body. Much worse in the night and morning. Drs are thinking stay on keytruda and steroids as long as side effects are manageable. But some time in the future resect the lung tumour which is in the right lower lobe. Has anyone had this operation who could give me some advice? ( Drs say that in 50% of cases like this when they resect there is actually no tumour left and the brightness on the pet is the immune system working)

thanks

anne-Louise 

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Rita and Charles's picture
Replies 7
Last reply 6/30/2015 - 8:59pm

So how we eat to improve health............just laying it out there that I am a past pastry chef and there typically is ice cream in the fridge!  A friend who is a nutritionist has shared with us some big NO NOs on how we should be eating.  We eat well now, but indulgences exist......

How has everyone changed their diet in this new "cancer enviornment"?

Rita

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sunshinecoll's picture
Replies 1
Last reply 6/27/2015 - 9:30pm
Replies by: 273c

Had stage 3b. did tumor removal off my leg. Removed all lymph nodes on my right groin. A month after I have developed Vitiglio. I have not had the treatment yet and got the Vitiglio. Has this happened to anybody. I have read people get it after the Novo treatment but I dont start that until next week.

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las630's picture
Replies 2
Last reply 6/28/2015 - 7:36am
Replies by: las630, BrianP

Hey there!  Just wanted to post my great results so that people who are newly diagnosed can know that they too can have some great news to look forward to!  :)

I had a suspicious mole removed from my left inner knee back on May 13th.  My dermatologist called me on May 19th and said I had malignant melanoma and had to see a surgical oncologist due to the path report.

I had my appt with the surgical oncologist on May 21st and was scheduled for a Wide Local Exicision with Sentinel Lymph Node Biopsy for June 19th. 

I had my surgery on June 19th and had a fairly large chunk taken out of my left inner leg by my knee, and had 1 lymph node removed during surgery from my left groin. I have about a 3 1/2 inch incision on my leg and a 2 inch incision on my groin.

I was very anxious for the test results because I had a 1.2 Breslow, ulcerated, high mitotic activility path report from the originial biopsy that was taken on May 13th.

I had my post-op appt with my surgical oncologist on June 25th and was very very very pleased to hear that there was NO lymph node involvement!!!  wahoooo  praise the Lord!!  The surgical oncologist did say that there was some residual tumor left over from my original biopsy which is why they had to take so much tissue out, and that I was upgraded to a Stage T2b, but most importantly, I am an N0!!  :)

I do need to do physical therapy due to loss of strength and sensation in my left leg, but none of that matters when you hear you are now NED (no evidence of disease)!!!  :)

So prayers work my friends, and I will be more than happy to pray for all of you!

Lots of love and hope to yinz all!!

xoxo- Lisa

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Anonymous's picture
Replies 2
Last reply 6/29/2015 - 11:05am
Replies by: Jenncat0402, Happy_girl

My dermatologist sent my tissue biopsy to Castle Bioscience for them to run the Decision DX-Melanoma test.  It came back as a class 1.  Haven't had my SLNB yet.  Anyone have experience with this gene expression profile test?  Is it reliable?

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