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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 0

i've had this mole for a long time. It is smaller than 6mm in diameter and the only thing "off" about it is the variation in color. It is not raised what so ever. Should i be concerned and consult a derm?

Login or register to post replies.

TexMelanomex's picture
Replies 7
Last reply 10/19/2017 - 1:34am

Hey Warriors, I hope you are all enjoying your weekend and relaxing! I wanted to post a few very minor SEs I've noticed since my first infusion of Keytruda on Tuesday (for informational purposes only, not griping :)

1) Minor flu-like symptoms and fatigue (not enough to keep me home from work or being able to do all my normal things), this lasted only 48 hours and resolved by Thursday night.

2) Sunlight sensitivity. This could be from the PV-10 so I can't blame the Keytruda but this has consisted of my exposed skin turning light red and itching like crazy even after brief exposure to sunlight (i.e., the side of my face after driving for 10 minutes). I don't know if this has improved since I have made sure to cover up even more since this started happening. I can say there have been no rashes or itching since the first 48 hours and benadryl topical cream was very effective.

3) Night sweats and getting up to pee at night. These are new developments but tolerable...I suppose its better to wake up to pee a few times vs not waking up and peeing the bed! The night sweats don't wake me up, but when I do wake up in the morning, the pillow and sheets are soaked.

Overall, I consider these things pretty minor and they are pretty easy to adjust to.

Rock on Warriors!

Tex

 

Tex

Login or register to post replies.

Julie in SoCal's picture
Replies 18
Last reply 10/19/2017 - 12:09am

Good Afternoon, Friends!

I have good news to share!  I am officially a NERD again!  That is I had scans last week and I have No Evidence of Recurring Disease!  How about them apples!?! 

So do the happy dance with me!

I am now 2/3rds of the way through the Lung Cancer Triathlon.  Surgery- check, Chemo- check!  The radiation phase is next and I think I start up this coming Friday.  I've never done radiation, so this will be a new experience for me.  I think I'm going to tell myself it's just like going on a ride at Disneyland!!

Mel seems to be in check, or at least I haven't found any new intransits.  So it's all good!

So looking forward to being done!  But, I'll stop complaining. it is working and for that I'm grateful!

Thank you friends!

Shalom!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

Login or register to post replies.

Found this new video posted just a few days ago.

https://www.youtube.com/watch?v=CdnkSf_3CUI&feature=em-subs_digest

Good stuff.

Login or register to post replies.

Found this new video posted just a few days ago.

https://www.youtube.com/watch?v=CdnkSf_3CUI&feature=em-subs_digest

Good stuff.

Login or register to post replies.

Dreaf01's picture
Replies 6
Last reply 10/18/2017 - 4:02pm

I just wanted to seek some advice from warriors on this board because I am kind of stuck and feel like I have no where to get advice from. Back in Dec. of 2016 I had a WLE and groin SLNB for Melanoma stage 1b 1.5mm not ulcerated, 4 mitosis, clark level IV. The margins came back clear and the SLNB was negative. Since the surgery I have had a small lump right near the SLNB scar. I have had 2 ultrasounds on the lump and both came back stating the lump is a normal appearing lymph node. How accurate is ultrasound? My surgeon stopped seeing me since I moved out of the area and I am now following up solely with the Dermatologist. I do have "pulled muscle" type pain in my groin area since this surgery, is this normal? I have to admit being a single mom to a 1 year old during this has caused me a lot of anxiety, but I feel like I cannot get anyone to take my concerns seriously. I have headaches and backaches and I feel like my concerns do not seem to be concerns of the PCP. I know with my stage I would not usually be referred to an Oncologist so I am wondering who I should discuss my concerns with. Thank you for any advise you can give !

Login or register to post replies.

Jeff_in_FL's picture
Replies 4
Last reply 10/18/2017 - 11:03am

Hi all,

Thought I would run this past you ...

May 8, 2017 I had an excision on my right calf ...Nodular variety. The VA surgeon did a pretty good job (flap method). Up until recently, I haven’t had any issues with it, but now there is a small pea size bump under the skin. Probably nothing at all, but I thought I would get some opinions while waiting for my VA appointment in early December. Wondering if this is a real common thing.

Thanks :)

Jeff

Login or register to post replies.

SDFun's picture
Replies 7
Last reply 10/18/2017 - 10:35am

Hi

 

I just got a voice my from teh billign depatment at the hospital my onoclogist is at that implies that insucne will not cover this testing and it may be $5000. I was wonderign what other people have learned? Did you have the testing and if so did your insuance cover all or a portion of it

 

Thank you

 

Nancy

Login or register to post replies.

Bekah274's picture
Replies 4
Last reply 10/18/2017 - 9:19am
Replies by: Anonymous, Bekah274, MelanomaMike, brendon

Hello, 

sorry to be a bother, may be a case of google has freaked me out. I have a mole on my chest, I’m a 27 year old female.  I’ve had it for as long as I can remember, in the past 2 years it’s started to develop black spots. I went to my doctor who looked at it and said the black spots were due to fake tan.  

However, I hardly put it on and it scrubs off... recently more black spots have appeared, it’s raised and not symmetrical, although it wans’t Symetrical 2 years ago and was only slightly raised.

is this something anyone has heard about before, I’m worried I go back and seem as though I’m panicking... sorry for the trouble.

Login or register to post replies.

zont's picture
Replies 6
Last reply 10/17/2017 - 11:12am

Hi All,
I am little confused and I need any ideas from you:
Since 2016 Nov I have gotten treatment with Opdivo (before I took mekinist + tafinlar 2014 - 2016)
But in 2017 Sept PET CT showed new MTS in liver and pleura.
My doctor advices me to add Yervoy (3mg per 1 kg) and decrease Opdivo from 3mg/1 kg to 1mg/1 kg

Did anybody the same therapy, I mean adding Yervoy after regression on Opdivo, or probably another options?
Thanks in advance! 

Login or register to post replies.

Happygal's picture
Replies 26
Last reply 10/17/2017 - 9:10am

I am to decide to start Yervioy within the week.  I am scared if the side effects outweigh the benefits.  I live a crazy full life and am so very afraid of this treatment.  Have you done it?  Did it affect your daily life?

Tyais

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 10/17/2017 - 8:42am

Just a question.  I was diagonosed with melanoma in situ in August and had surgery in september.  The initial bioposy had removed all melanoma.  I am switching health insurance companies.  On questionare it asks if you have cancer and treatment.  Do I mark yes or no?  I see a lot of different opinions regarding melanoma  in situ being cancer or not.  thanks.

Login or register to post replies.

skylark's picture
Replies 9
Last reply 10/17/2017 - 6:23am

Getting the melanoma diagnosis last month was surreal -- and really frightening.  Now I'm recovering from a Wide Excision (about 6 inches long) on my upper thigh and SLNB in the groin.  At three days out, the incision from the SLNB isn't bothering me too much, but the WLE incision is really swollen, especially at each end of the incision. It looks like two volcanoes!  Still uncomfortable to stand for even a short time.  Is this normal and if so, how long does it take for the swelling to go down?  I'm trying to stay off my feet as much as possible, but that's not helping with the worrying about what's next.  Any words of wisdom greatly appreciated.

Login or register to post replies.

GrossieGal313's picture
Replies 8
Last reply 10/17/2017 - 3:29am

Hello - My post is fairly premature. I don't have a lot of information yet.  I go in for a consultation with my surgeon on Thursday and am scheduled for surgery and sentinal lympnode biopsy on the 11th.

I'll start with what I do know....I received a call from the dermatologist that removed what I called a mole last Wednesday.  It's been there a very long time (8-10 years) it really hasn't changed (it's always been raised) and I've had it looked at twice in the past with a family practice physician beliving it to be a cyst.  Infact, the dermatologist that removed the top thought it was a scar.

Because of size and the and immediate plan for surgery with lymphnode biopsy that has been put into place I've gathered I'm at least a stage 2.

From what I understand the surgeon will go over the pathology report and after the sugery results I will go through staging and go from there?

Any advice as to what to expect over the next couple weeks and how to deal with the anxiety and stress until then?  Where do I go from staging?  If further treatment is needed I'm assuming I will be referred to an oncologist & at that point I find a specialty center?

The waiting is horrible, I think starting a conversation on this forum will help me deal until I get some answers.  

Donita 

 

Donita

Login or register to post replies.

MelanomaMike's picture
Replies 20
Last reply 10/16/2017 - 11:09pm

Hi guys, been awhile since iv been on, hope everyone is well. My Thoractic surgeon just called me, we had a surgery date of the 23rd {10/23/17} and he just called to say my CT scan i just had revealed my original tumor on my right lung {lower lobe} has grown to 2.5cm and a few more has sprouted up {smaller ones} so, he feels surgery isnt a good approach right now. Hes ordering a biopsy into my "left" lung where there is an easy access much smaller tumor {which was also there originally}. After my surgery in my left shin {june 29th 2017} those scan's  that where performed revealled my lungs activity one tumor on the right {larger of the two} and one little one on letft lung. It took me some time to get my head around either Chemo/Imm therapy or surgery, and after a month i decided to do the surgery & now its cancelled due to its "multification" of more tumors {another words its aggressive}. i mean wow! just in 2 months or less  its spreading fast? goes to show its urgency. My surgeon assured me if i had agreed to do the surgey a month ago, it would have been a waste of time accept a true diagnosis wich he already knows its melanoma by its looks {plus ive had 6 prior surgeries for Mel tumor removal.So, now chemo or Immunal  therapies are my only option, i hear Yervoy is good? and its not harsh on the body?and can it be done as an "outpatient" setting? any info or questions please write me, it just got even more serious for me today with his phone call, or, i may have been in denial thus far...im scared now, im not gunna lie...Take care brothers & sisters, Mike Pruitt

Login or register to post replies.

Pages