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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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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bjorne's picture
Replies 2
Last reply 8/20/2015 - 12:37pm
Replies by: Anonymous
Dear all, 
 
Wife 38 years old had melanoma mole 5 years ago in her left breast, no mitosis rate, 0,62 mm, 2cm borders in the resection. No treatments after that, just 6 months and now one year checks 
and strong dermatologist revision of her moles.  During this time we had two kids.
 
 
On July she found a lymph node swollen in her right breast, she has had several ultrasound of breast, axila. 
 
Even we said she had a melanoma:
 
- First only did the ultrasound in the left breast.  The ultrasound doctor said no doubt it is benign. 
- Second was just this week, more serious, another doctor took a look to everything.   He said it is very small, and you have an smaller one in the right axila also.  
  She noticed also the pubis lymp node swollen, also very small. 
 
Doctors said to take a look in six months. I feel very anxious, sad, and trying to get information without scare my wife. 
 
Please, could you give me your opinions, next steps, thoughts, 
 
Thank you all, 
 
love
Bjorne
 

Bjorne - Husband

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jvictoria's picture
Replies 3
Last reply 8/21/2015 - 10:17am

Hi All,

Thinking of getting on this Trial... anyone one it? Thoughts / Words of Wisdom?

Stage IIIb Melanoma

Recent Axila Disection

Thanks!!!

Juan

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/27/2015 - 3:28am

I'm a 17 year old female. Blonde hair, blue eyes, and fair skin. About a year ago, this mark showed up on my wrist. It was extremely itchy. After a lot of research, I realized it looked like a melanoma. It was asymmetrical, multicolored (brown, black, and a dark red color), had a ragged border, and was slightly raised. The skin around it was really red. I had multiple people tell me to get it checked out because it looked like a melanoma. But after a few weeks, I scratched it off, so I kind of just forgot about it. I've read that it is possible to scratch them off, but Ive also read that it isn't. There is now a light tan scar on my wrist where it was. 

 

Now, a year later, I haven't been feeling well. I noticed a painful lump in my left side, right below my ribs. I went to urgent care and the doctor said it's most likely a swollen lymph node. She didn't feel any other swollen lymph nodes. The day after I went to urgent care, I found a swollen lymph node in my neck. I also have a sore on my on my scalp that has been there for about 6 months and won't heal. It bleeds a lot and is sort of crusty. I didn't think it could be related, but after doing more research the past few days, I found out that many people who have melanoma have sores that don't heal. This is every symptom I've had in the past month or so: Headaches, dizziness, nausea and vomiting, severe fatigue, swollen lymph nodes, pain between shoulder blades, pain in lower back, and sore legs when walking, even short distances. I've had a low-grade fever for a week. I've also been coughing occasionally and experiencing shortness of breath. My symptoms have gotten much worse over the past week. I've been staying up all night, vomiting. I also had a nosebleed that started out of nowhere, though I don't know how that could be related. The doctor didn't do anything about this, except tell me to keep an eye on the lump in my side.

This was taken when I first noticed it.

https://photos.google.com/photo/AF1QipPBZ0SaBxINzI-g_fp-DKf6I7aDxquPiEgt...

This was taken a few days before a scratched it off. 

https://photos.google.com/photo/AF1QipOpewPRlmgkNoTCXe3Zkg0g2WvFPdaNAPON...

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/30/2015 - 7:49pm

Looking for Dr. Sara E Russell.  Was my phenominal surgical onc many years ago.  Don't see her listed on either the DFCI or Brigham & Women's registry.  Any help/info appreciated. 

Luke 1:37

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DianaD's picture
Replies 9
Last reply 8/20/2015 - 4:54pm

I've just returned from the University of Chicago--the liver doctor I saw today was able to obtain my biopsy results for me, for the mole that was removed from my back last week, and I do not have melanoma!

Thank you for the encouragement and support that I recieved on this forum--I truly appreciate it, and you will all be in my thoughts and prayers. 

DianaD

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Dugandoog1234's picture
Replies 12
Last reply 8/24/2015 - 11:02am

29 year old healthy fit male. From Alberta Canada. Diagnosed with stage 3 melanoma on May 15th/2015 location started on an existing mole located bottom middle of back, which then spread to left groin lymph nodes.Surgery was done June 30th/2015 removed cancer from back and all lymph nodes from left groin. PET scan and follow ups showed cancer has all been removed but radiation sessions are being booked to be on the safe side. Recovery had gone well and the full leg compression stocking is a must to limit swelling. My question to all is the cancer centre is offering me the 1 year interferon drug. I have read many posts and web pages and am leaning towards not doing the drug but would love to hear success and positive feed back. I'm very interested in natural paths as well. 

Thanks everyone

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