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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Happy_girl's picture
Replies 4
Last reply 3/17/2016 - 4:37pm
Replies by: Happy_girl, Janner, pookerpb

Hey! I have a random question. If melanoma was found in one lymph node under my left armpit- could it get to my right side in my neck.  I was feeling my neck the other day and felt a small bump.  I know neck nodes swell easily- but I was just curious if this was probable.  I have my 2 year check up on Monday- which I'm so thankful for!!! 

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JoanieM's picture
Replies 2
Last reply 3/17/2016 - 10:19am
Replies by: jenny22, jennunicorn

Okay so very random question for you ladies out there -when I get my nails done should I be concerned about putting my fingers under the UV light to dry my nails… aka a no chip mani- I have not done it since getting my diagnoses because I am scared! 

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Renate's picture
Replies 4
Last reply 3/18/2016 - 10:51am

Hello!  Irecently had 2 lymph nodes removed for SNL in mid January on my right groin.  I was putting scar cream on the incision sites and felt a hard lump between the inscision sites.  Its deep down and seemsto move around a little if I push on it. Microscopic cells were found in one node.  I had 2 opinoins - one saying melanoma and the other atypical spitz tumor.  I am not do for an ultrasound until June on the groin area to see if there are any changes in the lymph nodes. Could this be a seroma or scar tissue?  Could it be an enlarged lymph node so soon?  Should I callthe surgeon and ask to be seen sooner than June?  This has been such a roller coaster.

Thank you for any guidance.  Praying for you all - keep fighting the fight.

XOXO

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/17/2016 - 6:33am

I am 29 and was diagnosed with melanoma in my right arm in July 2015. I believe it was .07mm and the doctor was able to successfully remove everything. He had to cut down to the muscle in order to do so. What are my chances of getting melanoma again? Has anyone on here had melanoma removed and been clear up until now? Thank you in advance. 

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Suzi's picture
Replies 3
Last reply 3/19/2016 - 4:43pm
Replies by: DZnDef, Suzi, jennunicorn

Results are negative!
Ultrasounds and cat scans every 3 months, I can handle that :) YaY!

Suzi

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keepthefaith11's picture
Replies 5
Last reply 3/20/2016 - 1:34pm

Found out today my dad has to stop Yervoy treatment due to high liver bloodwork. It was either Alt or Ast that was over 400. Doctor says guidelines from drug company states to permanently discontinue at this point. He has been on Predisone for almost a week now. Any thoughts?

Thanks, Annie

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FriendofMari's picture
Replies 3
Last reply 3/18/2016 - 6:16am
Replies by: FriendofMari, Bubbles

Hello everyone, Mari is the closest friend of mine, she was diagnosed choroidal malignang Melanoma in 2014 and had a surgery of enucleation in May 2014, since that everything seemed to be ok, buT unfortunately, in Januari 2016, were found 6 mets in liver, the biggest one is 1.5 sm. she is taking her treatment in Turkey, achebadim Clinic with Keytruda, she had injected the second one this week. She feels ok, but we have a very huge problem about money, Unfortunately our insurance does not cover fees, so we have to gather money every 3 weeks, for 7500 euro per injection. please help us about this problem, every $ matters.
Here is a link of fundrising. please share among your friends.
https://www.gofundme.com/allofusformari

Also, we have a question, is here anyone who is NED after keytruda treatment? and how long is it lasting? thank you for your respond, sincerely, Maris friend Nino :)

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Mforest's picture
Replies 3
Last reply 3/15/2016 - 6:18pm
Replies by: Janner, Mforest

My ten year old daughter had this mole on her upper back since she was very young but over the past couple of years it had been scraped by her brushing her hair and she also picked at it when she was younger so it changed shape a bit.  Had it checked by one dermatologist years ago who said its nothing... Recently had another dermatologist check the mole and we decided to go ahead with a shave biopsy.  The pathology results: compound nevus with minimally to focally moderate atypica. Complete excision recommended.  

Our dermatologist basically said no big deal lets just make sure we get all clear margins with minimal scaring and since she doesn't do stitches referred us out to a plastic surgeon.  So we waited 2 months for an available appointment.  We went to the plastic surgeon yesterday who excised the mole and stated the mole was deep and he was making sure to get enough in case melanoma was present.  I was a bit taken back and respectfully questioned why he thought  melanoma was present when the biopsy pathology never mentioned it.  He said it can happen especially when the pathologist gets the larger sample rather than the shave.  Ok... now I'm nervous!!!!

Should I expect such a drastic change in pathology results from the excision to upstage from mild to moderate atypical to melanoma?  I am assuming the pathologist who read the shave biopsy would have mentioned melanoma concerns or maybe the shave biopsy didn't give him enough to make a concrete finding of melanoma?  i was told the same dermatopathologist who read the shave biopsy will also read the excision.  Plus in the shave biopsy pathology report there is a mention of a stromal inflammation response...not quite sure what that means.  Thanks 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/17/2016 - 12:04pm
Replies by: Adam-MRF

We are getting all sorts of spam on this board, which I'm sure has been reported to you. It would be helpful if you could please check in at least once a day to remove any spam. If that's not possible, then maybe you can consider making a member who visits this board freqently an admin.

Thank you.

Stage III, Unknown Primary; 1 positive node in left axilla

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Bubbles's picture
Replies 4
Last reply 3/19/2016 - 5:43pm

Any chance we could use the words 'drivers license', 'pass ports' or 'hemp oil' as triggers to the spam blocker instead of D!@k K....the name of an amazing gentleman and cancer survivor??  Just wondering?? Who knows? Might be a good idea. Not to mention the rick simpson web address? C

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Suzi's picture
Replies 8
Last reply 3/27/2016 - 10:20am

Hi all
I'm trying to educate myself and I get a lille confused with some of the abbreviations, is there a list around here anywhere?
Suzi

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jennunicorn's picture
Replies 10
Last reply 3/17/2016 - 11:59am

I found a recommendation for this book on a blog of a young woman going through cancer. I am almost done reading it and I am so glad I found it!

"Everything Changes: Insider's Guide to Cancer in Your 20's and 30's" by Kairol Rosenthal

It's not a guide really, but it's written by a woman who found out she had thyroid cancer at age 27 and decided to write a book made of many different young cancer patient's stories. 

This is the description from Amazon:

On a shoestring budget and with tape recorder in hand, Kairol Rosenthal emerged from treatment and hit the road in search of other twenty- and thirtysomething cancer survivors. From the Big Apple to the Bible Belt, she dusted the sugarcoating off of the young adult cancer experience, exposing the gritty and compelling stories of twenty-five complete strangers. The men and women in Everything Changes confess their most vulnerable moments, revealing cancer experiences they never told anyone else—everything from what they thought about at night before going to bed to what they wish they could tell their lovers but were too afraid to.

Being 29 myself, it definitely feels lonely sometimes... all of my friends are getting married, having kids, getting engaged and have never had cancer of any kind. Every day it seems like a new fun life event is happening to someone I know on Facebook... and I'm over here like, yeah I just got my first ultrasound and it wasn't for pregnancy! 

Anyway, for anyone else that is young and wants a good book to read to not feel so alone in this cancer world, this is a great one. It's good for all ages, really.

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Hikeratheart's picture
Replies 7
Last reply 3/16/2016 - 8:53pm
Replies by: Anonymous, Hikeratheart, Janner

Hi All,

I want you to know how important this forum is to me since I was diagnosed July 1, 2015, stage 2b. I did the happy dance when after a SNB they found no lymph involvement. My left arm had a breslows 4.5 tumor which was surgically removed. I know this is concerning. I have had numerous excisions(benign) on my legs, and moes surgery on my face in about 4 spots. 

My derma is diligent, and I am also continually self checking.

About 5 weeks ago, I noticed a thick "blister" on my left foot, top of my second to the last toe. It presented like a wart, and so thats how I treated it.  Soaking it and applying compound W.    No amount of compound W, and those wart band aids effected it. It is hard, and pink to clear color, about the size of a dime.  I also have one my right foot, between my toes, a small clear bubble with a dark irregular dark spot next to it.  This to me is worrisome. Neither spot bleeds nor itches.

I see my derma about the following on  Monday, 3/28. 

Please share any thoughts as I move forward, thank you so much!

And a special thank you to all the care, knowledge, information and hope that you all give through this board.

 

Kathy McC

hikeratheart

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jodaro's picture
Replies 2
Last reply 3/14/2016 - 9:09pm
Replies by: Anonymous, Bubbles

Read this yesterday and thought it might be interesting to this forum.

http://www.nytimes.com/2016/03/13/opinion/sunday/the-neuroscientist-who-...

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Yikes! We drove back home, 4 hours from Tampa on March 5. On March 6 new symptoms began, which turned out to be the "other" brain tumor in the frontal lobe. This frontal lobe tumor was scheduled to be radiated the week of March 21 along with the tumor bed of the parietal tumor. However it would not cooperate and generated enough vasogenic edema to impair speech, swallowing, facial muscles and typing. Mac had a second craniotomy 7 days after the first, but this time in our hometown as we had no time to get to Tampa. He is stil recovering in the hospital and will get a feeding tube tomorrow. He hasn't eaten since last Wednesday. We are waiting to hear from Moffitt officially about the dabrafenib and mekinist and whether they can be crushed and administered through a g tube. The research I have done so far indicates that will not be a possibility. 

Mac's oncologist has mentioned Keytruda in the past and it may become the next option. My question is:are there any of you who are managed by a cancer center that is not close to home, but have been able to get the Keytruda infusions in your hometown?

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