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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Good Morning!!

Has anyone had elevated kidney levels and not felt good or not themselves?!? I have felt this way now for the past two weeks, going on week three. Withheld Nivo treatment this past Friday due to higher levels. Explains why I have felt the way I have. Contacted Oncologist this morning, waiting to hear back. I don't think I can wait another two weeks before we do more labs ect. Has anyone else experienced this....? When my liver functions were sky high I had no idea, felt normal!!!

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Coragirl's picture
Replies 3
Last reply 10/22/2018 - 2:13pm

Hi all, I have not been reading much lately. I just needed a little break from melanoma. My 11 year old son broke his leg and he has been home for 2 weeks so he has been keeping me very busy. My husband has scans next Tuesday. These will be the first scans since he had the radiation treatment back in August. I am just so anxious about the results. I will not be going to Houston with him because I need to be here for my son. I'm just scared. Hope all of you are well and hopefully keeping melanoma at bay. Thanks for reading.

Amie Taylor

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MelanomaMike's picture
Replies 9
Last reply 10/22/2018 - 12:34pm

Hi ya'all! Hope my folks are all feeling fine as fine can be? Im good, gettin my Backpack loaded with Fight Gear for tommorows #6 Opdivo! Sony MP3, Headphones & snacks/bev's!...
Its been over a month since #5 as you know, it was postponed til we came up with a new Battle Plan and we did which you know, Surgery on the 5.4cm monster, take his sorry ass out & let the Nivo take over the rest of the tumors that seem to be Fearing its deadly, liquidy, chemical compounds! Chemical Warfare!.. Haha..By the way, play the LOTTO!! MEGA MILLIONS!! Its at 1.6 BILLION! I wanna build a Resort ONLY for us Melanoma folks, top notch Med teams, kickass Bungalows, pools & spas you name it!! Animals & pets invited!!.. Love ya guys..

Im Melanoma and my host is Mike..

www.covvha.net

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Hi, been researchIng if pathology 2nd opinion would be beneficial with my low risk legion?  

Appears I do not qualify for SLNB as my lesion is just below the .76 mm cut off and I have no ulceration although a 1mm2 mitotic rate.  My pathology was performed by a dermopatholigst and also reviewed by an additional dermopatholigst in the same lab who agreed with the results.  I am very thankful to be considered low risk but want to be sure I don’t “fall through the cracks” by being so close to the cut off for additional testing.  

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/21/2018 - 5:12pm
Replies by: MelanomaMike, Janner

Hello, hope to get some suggestions...

Currently have a experienced dermatologist, she isn’t a melanoma specialist but she found my stage 1a melanoma and other moderate atypical moles.  I am also very grateful she refused to do a shave on my primary melanoma lesion and sent me directly to the plastic surgeon for excision biopsy.  It came back stage 1a/.07mm/clear margins 4.0 mm.  I have the WLE scheduled with this same plastic surgeon to take 10mm.  Along with skin cancer she also performs breast cancer surgery but she is not a melanoma specialist.  She also said no lymph node biopsy is needed.  

My question is: should I be looking for a dermatologist and surgeon who specializes in melanoma?  Should I have a sugerical oncologist for the WLE?  Thank you 

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Stoofs's picture
Replies 2
Last reply 10/22/2018 - 10:12am
Replies by: Stoofs, MelanomaMike

I just wanted to say thank you all for the peace of mind you've given me this week while waiting for results of my biopsy. I have a mole that turned black and has "spread". My PC says she's concerned, which sent me into a full blown panic attack in her office. Yay, anxiety!
It's been a trying year for my husband and I; it's also our first year of marriage. I won't bore you guys with our other issues but I've had a few health scares, including a growth in the back of my throat, chronic fatigue, and a few blood tests that came back with a very low white blood cell count. I had the throat growth biopsied and removed and it came back benign. After a bone marrow biopsy (a particularly enjoyable experience lol) they were unable to explain my low T cells. Phew. Ok, so no cancer or disease.
My husband noticed this mole months ago and I figured I'd get it checked out when I go in for my next physical. It wasn't a concern because I had no idea how deadly melanoma can be. I've always heard of people getting skin cancer and then simply getting it removed. Compared to everything else going on a mole was the last thing on my mind.
He recently reminded me that I should get it checked out, so I looked up what it could possibly be. HORRIBLE IDEA. I quickly made the appointment and now I wait. The internet has sent me spiraling. I feel ridiculous because I don't even know yet but this whole year I've felt not myself. I just know something is off, so in the back of my mind I'm thinking, "This could explain it." When I found this site I was flooded with relief. You guys are always encouraging, even if it's just someone like me who's unsure and scared out of their minds. Any time I've had the urge to go back online, I just come here. So, thank you.

Stephanie McCann

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Hey all!

33yo woman here with tons of sun damage from a misguided youth without sunscreen. My mom was a tanner and never taught me the dangers of sun damage or bothered with sunscreen, so when I became a lifeguard as a teen, neither did I. Tanning beds, deep suntans in the summer... and I'm a blonde Irish/Norwegian mix with red undertones in my hair, so almost as fair skinned as you can get.

About a year ago I noticed a new bump on my face. It was a little shiny pink raised bump that I thought was a small whitehead or something that just hadn't "ripened" yet. I tried popping it a few times and it just got angry and bled. Fast forward a few months. It had grown more vertically and started turning tan. I took a pic (and made a mental note to get it looked at soon) and then life happened and I put it on the back burner again.

Fast forward to last week and I got a better look at it in the mirror, which I usually avoid due to poor self esteem. It has changed. A LOT. It has gotten thicker and firmer, is very slightly scaling around the outer edge, and is filling in with very uneven, varied-color pigments. This thing is tiny, about 2.5mm, but looks like none of my other moles, freckles, sunspots, or anything. I have read descriptions of NM that pretty closely match how it has behaved and what it looks like, so I'm definitely moving on it in a hurry now.

I'm getting it looked at Monday morning by a derm and I'm definitely nervous, especially as the single mother of a 12 year old, but kind of just trying to brace myself for bad news just in case. It's definitely not "normal," but here's hoping for no malignancy. I especially hope this as I already have a chronic health condition that can be life threatening on its own. Nobody in my family knows about my derm appointment yet. Hopefully they don't need to.

I want to thank this forum for providing so much valuable insight to me over the past few days as I work to find out what it is. I have a list of questions for the derm on Monday morning and it's thanks to this crowd. You are a bunch of beautiful brave warriors and give great advice.

I leave you with pics of my face-mole-bump-spot-thing and ask for well wishes, prayers, crossed fingers, good vibes, fairy dust, or whatever you believe in. Hoping I don't need to join this group for the long haul, but at least if I need to I know I'm in great company. Thank you all for posting such great info for a newbie to all this to pick up and run with! It's much appreciated.

Before and after, Dec '17 - Oct 18: https://i.imgur.com/M6yOfkK_d.jpg

A close up without the glare: https://i.imgur.com/irDSBLF_d.jpg

Of course, if you have any feel good stories about your mom's cousin's barber's girlfriend that had a small firm shiny lesion that changed this significantly over the course of a year or so, I'd be glad to hear them in the meantime!

AB

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Antonio's picture
Replies 9
Last reply 10/22/2018 - 10:44am

Hey guys 

at the beginning of September my father had 6 treatment of radiotherapy in his mediastinum .

He was feeling quite well before it , but the night between the 5th and the 6th treatment started to suffer of severe dyspnea and atrial fibrillation .

All doctors says that is mainly due to his melanoma but before the treatment he was feeling pretty well and having a normal life . Now he is on cortisone and other thousand of medicine and he was forced to stop keytruda  and he feels always very tired with no energy 

I was wondering if there s anybody in the forum who experience such a strong side effects from

radio  and for how long 

cheers 

Antonio

 

 

 

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RichInLife2's picture
Replies 5
Last reply 10/22/2018 - 2:11pm

It's election time here in Connecticut and many voters are showing their preferences with signage on their property. Now, this post in no way represents a politcal endorsement of any kind, but every time I drive by a house with this sign in the front yard, I smile.

https://pbs.twimg.com/media/DkBBIfUUUAA7Mdd.jpg

Have a great weekend everyone!

 

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swalters1038's picture
Replies 2
Last reply 10/20/2018 - 2:46pm
Replies by: GreggL, MarkR

I can't say that its been the easiest year by any means.   We said goodbyes to my dad after a 16 month battle with pancreatic cancer, said good bye to my wife's mom in August after a 12 month battle  with pancreatic as well, and somewhere inbetween I was diagnosed with stage 3c melanoma.  The melanoma was found in an intra glandular lymph node in my left parotid gland.  I could go on in detail, but long story short it was found in another lymph node and the extra nodal extensions had invaded a portion of my neck muscles as well.

My mom said it best when dad passed "You still need your Dad at 35".  I find my biggest struggle with the diagnosis trying to reconcile that with my 4-year old and the one on the way. The surgery, radiation, and chemotherapy (tafinalr mekinist combo) has already stole so much time, and energy (mental and physical). I'm tired of how this diagnosis defines my life, how people look and treat me differently...I'm the same person with the same everything aside from a 12 inch scar and a 40 pound weight loss.

Overall, I think we have taken this in stride, handling it pretty well, and staying pretty positive aside from the momentary drift to all the "what ifs".  

Steven

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