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
Melissa1987's picture
Replies 4
Last reply 10/18/2018 - 10:24pm

I have an ugly mole that is growing and I’m having issues finding a dermatologist who isn’t scheduling way far out in advance. One isn’t taking people until March the other isn’t taking anyone until January. I did find one for December 6 which isn’t too far out but I don’t feel like I should wait that long. I’ve called every one near me and they are absolutely no help and don’t seem to care. I am not sure it’s melanoma but it’s a good chance from the research I’ve done

Login or register to post replies.

VinceMart's picture
Replies 4
Last reply 10/18/2018 - 4:46pm

Hi Melanoma Fighters,

Update on Braftovi/Mektovi-had my 8 week scan after being on Braftovi/Mektovi and not the results I was hoping for.  My 2 liver mets increased slightly, 1 decreased slightly, I know have a new met in my upper arm and possible metastis in my L3 in my spine.  So, Dr is reviewing my case at a meeting tomorrow and I will have to make a decision to do Ippi/Nivo, TIL or clinical trial.  

I know I am in good hands but this was still a disappointment.

Vince

Login or register to post replies.

Bubbles's picture
Replies 27
Last reply 10/18/2018 - 1:28pm

For those of you who expressed an interest, here's the plan:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/10/from-melanoma-darling-to-step-child-of.html  

Getting stronger each day.  We'll see what Monday brings!!!  Thanks for the love and support you have all shared with me for so many years.  Wishing you all my best.  Love, c

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 10/18/2018 - 7:16am
Replies by: Edwin, Anonymous

Hi all,

I am new to post here and have found a lot of great information. I had a mole removed in April 2018 and found out that it was melanoma. The depth was only .6 but I still opted to do the SNB. Despite a 5% chance of spread, one node was positive microscopically. I am currently doing one year of opdivo. On my most recent pet scan, a lymph node on the left side of my neck lit up. My original lymph nodes were removed under my arms. My oncologist does not seem worried and said opdivo can cause inflammation of lymph nodes. I was also just diagnosed with hypothyroidism as a result of the drug. The endocrinologist does not think the lymph node lighting up is related to the thyroid issues which worries me more. Has anyone has a similar issue with nodes lighting up while receiving immunotherapy? Thank you!

Login or register to post replies.

smiller's picture
Replies 6
Last reply 10/17/2018 - 3:12pm

Can someone tell me the early symptoms if stage 4 melanoma has spread to the brain?

Thank you,

Jim's wife

Login or register to post replies.

Bethharte's picture
Replies 8
Last reply 10/17/2018 - 11:35am

 

I orginally had stage IIIA SS Melanoma with 1 micromatasteses in SN and RLND  in 2010. I followed with the full course of Interferon A and been NED since then. Three weeks ago I found a lump in the goid where I had the RLND and saw my oncologist last week. I was told, from just pyhsical examination so far at this point it is recurrence. My family doctor helped me out a little and had me in for an unltrasound on the area. The results show a probable 2cm soft tissue tumor. I have gotten my CT scans moved up from December to Oct 22nd, working on getting the MRI moved up. Talked to peer support via the Cancer Society but they were unable to "reach" me. They are long term disease free but they were stage IV when they started in 1993 and 2002 and hvae never been recurrent after this long. I am trying to reach out to someone whose story might be similar, I am trying to find my fight.  

I have attempted to do some resarch, I am in health care, know what to stay away from and that statistics now are lagging in accuracy because of the newer protocals . I am having trouble finding any information on recurrence in the basin where the RLND was done and if that constitues local or locoregional recurrence. I know a lot of you are thinking, well at least you got the past almost 9 years, but now it feels like I have had a time bomb ticking away and didn't even know someone had started the clock. 

Please help talk me down and find my fight. The waiting to do something is destroying my mental health.

 

Login or register to post replies.

JessS's picture
Replies 9
Last reply 10/17/2018 - 11:26am
Replies by: MelanomaMike, mbrrna, smiller, Anonymous, bjeans, Janner, JessS

Hi everyone, 

 

First, I would like to say that I have an appointment set with my GP this week. However, the more I read, the more I eat (aka anxiety).

Like two months ago a dark, relatively large, mark appeared on my elbow. It was inflamed and I wonder how and why would I get it. I quickly googled it and thought about Diabetes II but it doesnt look like any other patches on the internet. Plus my blood sugar (I've been doing Keto) seem stable two hours after a meal.

Recently, I started to look for answers again and stumble into Melanoma. It is a new word for me and honestly, I didn't even understand the severity of it. Here is when I enter panic mode. Why? Well, the mark has been there for two months, although, it doesn't hurt anymore, it has blended as part of me. It is not dry skin. It is just a big birthmark that just appeared out of nowhere. However, I also have a toenail with a black line that never goes away. It has been there for three years now and I have never thought anything of it until now. I have a new mole between my nose and eye, and a little-bruised dot under my arm that doesnt go away. To make matters worse for my paranoia, I have been coughing for the past month and lost my voice last week and I am now barely recovering it. 

<iframe src="https://drive.google.com/file/d/1YXIbOs6daXDVzS3DH_YXA7WQmziqww8p/preview" width="640" height="480"></iframe>

Any thoughts or ideas? Should I be alarmed? I hope you can see the picture. I am not sure if I did it correctly. 

 

 

Login or register to post replies.

AMcReader's picture
Replies 8
Last reply 10/17/2018 - 9:40am

I’m had my second dose of Opdivo  a few weeks ago and am wondering if anyone else has experienced hair loss from Opdivo. If so, can you tell me when it started and how long it went on.

I also had SRS to an area in my brain, however, that was 7 weeks ago and most of the hair in that area has already fallen out. It seems like I’m losing hair from other areas on my head but between the Opdivo, SRS and the fact that I just had a baby in February (meaning I’m at the post-pregnancy hair loss time)...it’s hard to figure out the cause.

Thanks in advance for any insight!

Amanda

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

Login or register to post replies.

sharonlynn210's picture
Replies 14
Last reply 10/16/2018 - 1:56pm

My son was 18 when he was diagnosed with Stage 3.He started Keytruda 5/3/2018.He will be getting his 11th infusion on Oct.22.They did see a few lung nodules on his 3 month scans that were 2mm and 4mm.They did not show up on his orginal Pet scan so they do not know if it was there or new.His six month no change in nodules.Im really worried for him.A lot of people told me lung nodules are common and may not mean anything.But how would a 18 have lung nodules.Has anyone else experienced this and do you think the Keytruda stopped them and will kill it?

Sharon

Login or register to post replies.

rlevi's picture
Replies 2
Last reply 10/16/2018 - 10:55am
Replies by: Anonymous, Janner

Hi,

I am looking for information about such cases when an Oncular Melanoma spreads ot the liver. Currently we are teating with immunotherapy, I am looking to hear about other treatment, maybe experimental treatments if there are any.

Also if anyone knows of relevant studies of such cases and treatment methodoligy.  

Thanks!

Login or register to post replies.

MelanomaMike's picture
Replies 2
Last reply 10/15/2018 - 9:42pm

Hi ya'll, just a quick note/update to let you all know our MRF sister Gin Young is doing ok, "Stable" but still very much in the fight! She & i stay in contact & shes having problems (like i did) with logging-In to MRF, the reCAPTCHA thing is weird...
She sends her Love, Hope & Prayers to ALL of you & to Bubbles (Celeste) whom she adores & respects!! Ill most likely be her "channel" of sorts to update her progress as she (WE) fight this nasty monster! Take ya'll & Happy Sunday Funday!..Mike, on behalf of Gin!

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 10/15/2018 - 12:03pm
Replies by: Raco, kandx, Toby0987

Can you still get a PET Scan with you have a head cold?

Someone told me that with a cold, your lymph nodes in your neck can get inlarged whitch will  show

activity in the Scan. 

TRUE or FALSE

Thanks All for your help

Login or register to post replies.

MelanomaMike's picture
Replies 5
Last reply 10/14/2018 - 4:07pm

Hello Family! Hope all is well with you's, im a bit "congested" in the nose (slash) sinus area, now that i know "kinda" what it is from my CT Scan (Moderate Paranasal sinus mucosal desease) as it was written in the report, i will bring it up with Onco..
Its raining here in SoCal! Cant believe it! Started last night, its always nice to have some rain, especially for our plants, trees, to many fires out here..
You all take care ok? Have a good weekend!...

Login or register to post replies.

MelanomaMike's picture
Replies 8
Last reply 10/14/2018 - 12:12am

Hi family, quick update, and dont yell at me, i didnt go to Riverside for that 3rd opinion onco eyes, i already have a plan in place, surgery then back on Opdivo. Its the ONLY treatment i feel comfortable doing not to mention the QUICKIST way to shoot down the 5.4cm bastard out of my lung! Hes gotta go! Iv actually seen that Onco before & all he talked about was IL-2 stuff and im not ready for that yet...
So anyways ya, i didnt go, i hate that i promised my onco but, when i see her next i will have a flower/rose in hand & puppy dog eyes...love ya guys

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

Elizabeth123's picture
Replies 6
Last reply 10/13/2018 - 9:09pm

Hello All

 

Ezio has been in the hospital for a week now.  And he’s still not improving,  he is awake but can’t really speak,  he just started eating this weekend. The oncologist came by and thinks there’s still some pressure or something pressing in the brain.  There doing more blood work tomorrow to see if he can go back on targeted  therapy to see if it will shrink some of the tumours.   Problem was when we were on targeted therapy  we kept getting progression in the brain.  He is not a candidate for surgery,  there is just to many. 

Running out of options, holding out for a miracle 

elizabeth

Login or register to post replies.

Pages