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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Mamarose0403's picture
Replies 9
Last reply 8/25/2015 - 12:22pm

I was diagnosed with a-b lentigo v malignant melanomas. Two shave biopsies were performed and pathology showed Breslow depths of .18mm & the other at least .6mm with tumor present in deep margins as well as peripheral. I was referred to an oncology team but after reviewing my labs they referred  me to a general surgeon without seeing me. I have since had the the excision but was told not to test lymph nodes at this time. The surgeon cut between 6-8 centimeters down into my forearm and about 6 inches in length. Recovery is not going as easy as I had hoped. I have quite a bit of nerve pain that the prescribed medication doesn't seem to help with and I am unable to bend my arm due to the incision nor can I straighten it because the skin was stretched so tightly when sutured.  My arm is also very cold in certain spots affected by the surgery. I was only told to be concerned if the surgical site was hot not ice cold. I am still worried about lymph nodes and metastasis but the discomfort it taking a front seat. My follow up isn't until sept 1 even though I have made an effort to make it sooner. I thought I was pretty tough in general but this experience is making me feel like I'm being overly dramatic which is not usually my nature. I have a Jewish mother for that department! Please help.  

Leahheart

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courtney2015's picture
Replies 6
Last reply 8/25/2015 - 11:23am
Replies by: casagrayson, courtney2015, michaelinsocal, Anonymous, 273c

Hi there. I had a Malignant Melanoma removed from below my left ankle almost 6 years ago. I'm down to a yearly full body check with dermatologists, luckily nothing has really popped up. Just wondering if anyone has had anything similar to this. In the last 8 weeks I've had a irregular tiny brown spot grow out of no where. It's on the same foot as my original melanoma along with being on the same side. I showed my GP today and she is concerned. I'm waiting to hear from the dermatologists about whether they want to biopsy it straight away or it can wait till I next see them in 2 weeks.

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Randy437's picture
Replies 7
Last reply 8/26/2015 - 10:59am
Replies by: kpcollins31, pookerpb, CHD, Anonymous, BrianP, Randy437

Are CT scans as effective in finding mets in the small intestine as they are in any other area of the body?

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lmhl's picture
Replies 6
Last reply 8/25/2015 - 10:34am
Replies by: lmhl, Anonymous, Andrew1725, momof4boys

Hello

After hearing President Carter's diagnosis of melanoma and his family history of pancreatic cancer, I have a question.  Has anyone ever read about the relationship between the two cancers.  My husband recently passed away from melanoma and his father passed away from pancreatic cancer.  When my husband was first diagnosed our oncologist spoke about a genetic link between the two.  Has anyone else heard about this?

President Carter's announcement was difficult to hear.  My husband experienced melanoma spreading to his brain as well.  

Thank you.  WIshing you all the best.  

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Anonymous's picture
Anonymous
Replies 0

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momof4boys's picture
Replies 5
Last reply 8/23/2015 - 6:32am
Replies by: Jubes, Bubbles, momof4boys, kylez

So I was diagnosed 3b in June 2013 when it was found on my right calf. Snb tested positive so I had a complete lymphadectomy of right groin. In Oct I started Ipi and was able to complete all doses including maintenance doses. Since Im on a trial I get scanned every 3 months with a ct and every 6 or 12 with a pet. So I had a ct in May, Pet in June and both were fine. I had a ct yesterday that showed a lung mass on each lung plus the lymph nodes are enlarged. One was 1.4 cm and the other was 1cm. They have decided to go down my throat to biopsy the lymph nodes. I just want some input here, seems like pretty rapid growth. I'm wondering about this biopsy and the pain level with that as well as if it does turn out to be melanoma what path do you all think I should take? I'm thinking since these are over 1cm and there is lymph envolvement that it probably is melanoma. Any input here is greatly appreciated. I am a mom to 4 teenage boys and I feel like I need to be on top of my game here.

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I received insurance approval yesterday for the ipi/nivo combo, even though I've had prior ipi.  I really had no side effects with the ipi before, but I know this time things may be different. I wanted to let folks know options are out there.

 

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akamo's picture
Replies 5
Last reply 8/23/2015 - 6:15pm
Replies by: akamo, jaricha4, stars, Anonymous

Hi. Well my husband had the WLE Monday and he goes in on August 25th to get the pathology report. He had the surgery done at the dermatologist office by a plastic surgeon and now we are wondering where he should have his 3 or 6 month follow-up appointments? Dermatologist or melanoma oncologist? Btw, he was a 1A, clarks level II with clear margins after the biopsy. Assuming everything is good because the doctor said he likes to take more than called for in the guidelines. Btw, incision is 11 cm long for a centimeter biopsy. Do you suppose that is good or ridiculously excessive? My husband is a bit mad but I tell him it is over now so hopefully overkill will guarentee no return of the melanoma. Anyway, mainly wanting to know where everyone does their follow up visits. Thanks~Robin

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Jacqueh27's picture
Replies 11
Last reply 8/23/2015 - 9:24am

I have not posted in a while. My daughter is still plugging along after four rounds of Yervoy and now going on 6th round of Keytruda. Her tumor has shrunk from original 14 cm now down to 9 and while we hoped on her first scan after four rounds of Keytruda she would be able to get it removed, she has now been told she needs a year more of treatment. The cancer is still contained to liver - brain still clear and her numbers and LDH are all in normal range and she feels better than ever. They say that the heat activity is no longer considered "hot melanoma" which I'm a little confused about but they say that means activity is much lower. Does Keytruda take this long to fight this? Can anybody shed some light?

 

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emano87's picture
Replies 1
Last reply 8/20/2015 - 8:58pm
Replies by: Bubbles

I feel so selfish writing this on these boards but I have spent majority of the day on google with no luck. I have not been diagnosed with melanoma but have over 100 moles and grandparents that have been. I recently gave birth to a beautiful baby boy and noticed several moles I would like to get checked out. I currently see a derm once a year for a full body scan and had one while pregnant but still do not feel confident in the results. I have several atypicals that I feel need to be removed but the Dr seems to think differently. I am looking for a new derm in possibly the Anniston Gadsden or Birmingham area that is very aggressive. I can not bear to think of missing one of these and missing out on my little boy.

Also, has anyone went to a plant based diet I thought about doing this to be preventitive.

All of your stories are so helpful !!! I know I am freaking out an prob about nothing but I am going to blame it on the hormoes.

 

Thank You,

Emily

 

I hope this is the right forum to post this on if not please forgive me. 

 

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Charlie S's picture
Replies 4
Last reply 8/21/2015 - 7:18am
Replies by: rosa1, Bubbles, Rocco, Charlie S

It totally sucks that Jerry did not make it.  He definitely was one of the good guys.

Here is a link to his obituary from the funeral home.  You can send flowers or sign the guest book.

http://www.danielsfuneralhome.com/home/index.cfm

 

Godspeed, Jerry.

 

Charlie

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mrsaxde's picture
Replies 11
Last reply 8/23/2015 - 11:31pm

I write for the blog Addicting Info. Today I had a chance to educate our readers on melanoma, and that it's not just a minor skin condition, which is how some people seem to regard it.

http://www.addictinginfo.org/2015/08/20/jimmy-carter-has-melanoma-no-its...

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ET-SF's picture
Replies 3
Last reply 8/21/2015 - 12:52am
Replies by: stars, CHD, Fen

Hi everyone!

What a great group of people you are.  Thank you so much for your support, encouragemnt, and advice!  I'm sorry we haven't been more responsive.  We've barely had time to breathe.

I will see ET in about 15 min.  She is out of surgery, and the surgeon is thrilled with the outcome.  I'm pumped!

Based on the path, we were expecting a positive SLN, but it appears to be cancer free.  Confirmation will come maybe Tuesday when the lab comes back.  So I think we're looking at stage II.  Woohoo!

The surgeon will order up genetic tests to determine the mutation(s).  We have plenty of material available from the first excision.

Base on everyone's input here, we're looking probably towards Johns Hopkins, and I think we'll be able to get the local referral.  Lipson sounds like a great guy, but I know there are others too.

Anyway, we've got a lot more positive outlook this afternoon than we had this morning.

THANK YOU ALL!

ET and SF

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Hello everyone,

As many of you may have heard, this morning President Jimmy Carter announced that he has been diagnosed with melanoma and will begin treatment today. More information on his diagnosis and treatment plan can be found in the Washington Post article below. The entire MRF team will keep President Carter and his family in our thoughts.

http://www.washingtonpost.com/news/to-your-health/wp/2015/08/20/jimmy-ca...

Sincerely,

Adam - MRF

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