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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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

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/16/2018 - 8:01pm
Replies by: Janner

Hello, hope for some insight for a superficial spreading melanoma.  Two weeks ago had this suspicious mole removed by plastic surgeon by excision.  Trying to gather as much info to ask my surgeon at follow up appointment.                                                                Lab results:                                                               Clark’s level III with Breslow thickness of 0.7mm.  Epidermal ulceration not identified.                           Mitotic rate 1/mm.                                                                                                                                                  Margins clear.                                                               Lab staging is pT1a pnx.  

Surgeon wants to do another excision to get 10mm margins.  She wrote on report staging melanoma instu and did not mention SLN Biopsy.  Upon initial research my lab results suggest stage 1a.  Should I push for SNL Biopsy and what is significance of non brisk results? Thank you very much for any help and information!  

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Bethharte's picture
Replies 7
Last reply 10/16/2018 - 5:36pm

 

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.

 

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JessS's picture
Replies 8
Last reply 10/16/2018 - 5:23pm
Replies by: mbrrna, smiller, Anonymous, bjeans, Janner, JessS, MelanomaMike

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. 

 

 

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smiller's picture
Replies 5
Last reply 10/16/2018 - 11:32am

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

Thank you,

Jim's wife

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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!

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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

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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!...

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Bubbles's picture
Replies 24
Last reply 10/16/2018 - 7:28pm

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

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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

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/12/2018 - 1:29pm
Replies by: JennH, MMH

Hello,

     I want to see if anyone might have any advice for me.  I am a 33 yr old fair skinned female, who visited a dermotologist (for the first time) last month after noticing a weird mole like thing on my calf. The derm did not know what it was, and did a shave biopsy.

   They called last week and said it was a "junctional spitz nevus with moderate to severe atypica, close to the peripheral shave border" and recommended I see a plastic surgeon for removal.  I had a second opinion today (just from reading pathology report) and he said we could wait and see on it, or he could remove it in office. 

    I am planned to have it all removed by this dermotologist in 2 weeks, since I don't care about scarring, but I am concerned reading about Spitz Nevus and that they are often misdiagnosed melanoma.  Does anyone else have experience or advice regarding treatment?  Does this need closer monitoring than a different type of atypical mole?  Are they likely to call me back after this second removal and tell me they need to continue testing?  I am panicking and I don't know if it's truly warranted.

 

Thanks for any help or advice you can offer.

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Bethharte's picture
Replies 3
Last reply 10/12/2018 - 8:25pm

Hello All, 

  I originally was diagnosed with IIIA SS Melanoma of the left leg with 3 microscopic cell ins in SN, completed the full 52 weeks of InterferonA and have been NED since 2010, unitl now. I found a 2cm lump where I had a RLND and my Oncologist is sure this is recurrent Melanoma. Ultrasound of the mass shows it to be 2cm. I have not had any other testing as of yet or scans for the last 3 years. 

I have searched for information regarding prognosis, current therapies ( my Oncolgist) is testing my original tumor for BRAF as is was not available when I was first diagnosed and the need had not arisen until now. 

Does anyone have any wisdon they can offer who have gone through a similar or like experience. 

 

Beth

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/12/2018 - 10:24am
Replies by: Anonymous, KellyH, caman, Bradley75, WithinMySkin

Hi everyone, what does nodular appearing mean?...Isnt a nodular a nodular?..are their things that look like a mass or nodular but its just something else?  Has anyone come across this before?..Thank you!!

1.  No definitive evidence of metastatic melanoma within the abdomen or pelvis.
2.  Nodular appearing left adrenal gland and nonenlarged but prominent mesenteric lymph nodes are seen, these findings are nonspecific. Attention on future follow-up imaging is advised.


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STL Mike's picture
Replies 6
Last reply 10/12/2018 - 4:01pm

I've been lurking w/o registering for about a year now so decided to finally "show my face".

They recently changed the way they do patient info on my centers website so I'm still figuring out how to access it all.

My first run in with melanoma was in the mid to late 80s when I had an area excised over my left shoulder blade. I was never staged as far as I know and I remember they injected me with a dye that was the made from the shell fish flamingos ate that made them pink.  I was told no problems and life went on.

In June of 2015 I was seeing my primary and he was concerned about a rather substantial weight loss over last six months.  Went and had one of those swallow this nasty stuff so we can look at your insides exams.

Well my digestive tract was normal but they saw a shadow where my liver was.  So back for another test. CT scan this time.  And yep something fishy with liver. Next step biopsy.  And now staged as IV metastasized to lungs, couple bone areas, adrenals, and lymph glands as well as the liver. BRAF - 2.  Brain MRI negative. They just found a sign saying "This Space for Rent".

I got in to a stage 3 trial for Yervoy/Opdivo combo. Started in Oct 2015.  Did the every 3 weeks with the combo then every 2 weeks with just the Opdivo.  Aside from being tired all the time was going pretty smoothly.  Was able to arrange treatments/labs for late in afternoon so minimal time off at work. 

Jan 2017 was NED for the 2nd time so treatment was stopped.  May 2017 scan showed spot on lung. Another biopsy which was positive and back to treatment.

Dec 2017 had been NED again for 2 scans and was developing side effects from treatment.  Losing toenails, skin lesions.  Saw dermatologist  and consensus was it was related to the Opdivio.  Treatment stopped. Been on Prednisone varying dosage since then fight the lesions. Looks like I'm winning that. Down to 5mg a day and see Doc Mon and hopefully will get off this stuff which has it's own Wheel-O-Side effects. In the interim in Jul 2018 had core punch biopsy for spot on my neck.  Aug 2018 had an excision on neck with clear margins which was in situ.

Next scan is 24 Oct. Really keeping fingers, toes, and eyes crossed hoping still NED.

I have followed everything on this forum and I have found hope that although there is no "cure" we can keep melanoma at bay. I am grateful for all the links to info that everyone has posted. Wealth of info in each of them.

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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

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