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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Debbiemartis's picture
Replies 2
Last reply 11/12/2018 - 11:03pm
Replies by: Debbiemartis, mandyjill

I have over 10amelanotic melanomas. I had invasive melanomamelanomas, stage 1 in 2005.  In July 2018 found 6 amelanotic melanomas and the number has been increasing since then as I am learning what to look for. With surgery margins are not clear on most of them. 

Has anyone had a similar situation?

Are there other treatments options?

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Rosiepup's picture
Replies 1
Last reply 11/12/2018 - 4:55pm
Replies by: jbronicki

Sorry, I didn’t mention in my last post that I also have Young Onset Parkinson’s Disease, which was diagnosed 10 years ago, aged 45.

 My oncologist has not had anyone else with Parkinson’s.  No issues with my Parkinsons meds and debraf/meck but I wonder how immunotherapy will be?  Is there anyone else with both conditions? 

Thanks Fi 

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Rosiepup's picture
Replies 15
Last reply 11/12/2018 - 1:36pm

Hi, I am new to the MRF site but on looking at it, I’m very impressed and everyone seems so friendly and helpful!

I was diagnosed stage iv in 2015 and started on debraf/meck at that time. My melanoma has  been stable with no real evidence of any disease for about three years, until now! I had a CT scan, including my head, which picked up a 5mm lesion in the left frontal lobe, devastated! This was just recently so still in shock. I naively thought I had it licked! I’m about to get targeted radiotherapy for this.

I’m on Debraf/meck and have been throughout, with the occasional short break due to side effects, but on the whole tolerated it fine.I’ve also got a couple of slightly enlarged lymph nodes in my chest area.

I was at the oncologist yesterday to discuss treatment options for after the radiotherapy and it’s not great.

Apparently they believe that the lymph nodes that have increased very slightly  in size, added to the brain lesion, indicates that the current treatment isn’t working as well. 3 options offered-

1. Stick with what I’m on just in case
2. One single type of immunotherapy treatment-Nivolumab
3. Two immunotherapy drugs Nivo/Ipi, administered together-which they tell me has better results but high chance of nasty side effects!
I’ve opted for the desert island, which they obviously forgot to mention!

any advice/experiences would be greatly appreciated?

Fi

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MelanomaMike's picture
Replies 13
Last reply 11/12/2018 - 5:00pm

Hi guys, sorry iv been outta the loop for a bit lately, feeling woozy and blah due to more Thyroid issues, my Endocrinologist up'd my dose (Livo)to 175mcg, its went up twice now in like 6 months, T4 seems to stay at o.8 to 1.0 and TSH is 14.59 a bit high (im Hypo)but no where near what it was when my Thyroid first took a crap after i started Keytruda last year in (Nov2017) wich was 45.9! I really felt that one, i was layed out..
Anyways guys, thank you all for my well wishes & speedy recoverys for Mondays Surgery, someone asked "where" it will be at Kaiser in Panorama City, by a great Doc name Dr.Wael Yacoub, hes very cool & believes this is a good move for my treatment otherwise the 5.4cm Mel Monster is just gunna get bigger since its defying all immunal drugs, its Not a cure we both know, but it will only get bigger & grow outside the lung & even BIGGER problem can occure..I tell ya, im NERVOUS as hell but im going, i wanna get this bitch out of me..thanks for having my back and i plan to write you all once i wake up, im sure I'll be in there for a few days..love ya guys.

Im Melanoma and my host is Mike..

www.covvha.net

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/12/2018 - 9:15am
Replies by: cancersnewnormal

Hi all,

I used to post here back in 2001 when I was first diagnosed. Years have gone by, and I no longer have that login, but I was in my early 20s and living in Oregon at the time. I now live in Arizona and need to find a good derm but don't know where to start. I have a few new suspicious moles and it's hard to narrow down recommendations from review sites when they are often written about cosmetic dermatology. I am willing to go wherever in the Phoenix metro area, although I live in the east valley.

Thanks so much

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seeyouall's picture
Replies 9
Last reply 11/10/2018 - 9:29pm

Hello

I live in S. Korea and early this month my mother was diagnosed mucosal melanoma in the nose.

She had a nosebleed about 2 months ago and found a small lump on the neck a month ago. We did not think they were related, but they were. 

Mucosal melanoma started in the nose and metastasized to the neck. No further metastasis has not been found yet.

Our doctor advised surgery and futher treatments. 

We our family are afraid if she can overcome surgery. She is 82 years old and weak.

Is surgery indispensable for my mother? Or skip sugery and receive chemo / immunotherapy? 

I could not find any cyber community for melanoma in S. Korea. So this site would be very helpful to me.

Thank you.  

 

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SABKLYN's picture
Replies 10
Last reply 11/12/2018 - 5:47pm

Just wanted to wish you good luck and a successful procedure on Monday!   I’m sure you’ll have the full weight of prayer and good wishes from all of the crew of the MRF Pirate Ship!!!

speedy recovery, my friend.

Best,

Stan

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RichInLife2's picture
Replies 5
Last reply 11/10/2018 - 8:49pm
Replies by: RichInLife2, lkb, Linny

I had my scan yesterday and finally met with my oncologist today. The report from the scan was very good news. There was nothing new in the scans and all existing tumors have shrunk or remained the same size, and the ones that haven’t shrunk may not be tumors. After discussing with my oncologist we decided to continue with Opdivo. The thinking is that the damage to the beta cells in my pancreas is already complete, and that any future damage to my endocrine system is treatable with hormones. Besides, the Opdivo train will probably continue rolling anyway even if we do stop treatment now. Basically, I’m trading a disease that is probably fatal for one that is treatable. 

I’m still in hospital trying to get my new friend diabetes under control, but I’m feeling better and hope to go home later today. A very stressful and tiring week, but overall things are looking very, very up. 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/10/2018 - 7:53pm
Replies by: lkb, guynamedbilly, Anonymous

I am really scared.

I had a melanoma removed in february this year and i have a movable eubbery lump in my groin. Its smooth and doesnt feel fixed or hard and its right on my hip bone where my leg joins my body. So my question is what are peoples experiences of cancerous lymph nodes?

How do they typically present and feel? Do they appear to grow slowly/quickly etc?

Im ringing the nurse tomorrow but a bit freaked out =/

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mortalMike's picture
Replies 4
Last reply 11/12/2018 - 10:03pm
Replies by: mortalMike, lkb, casagrayson

Thank you Lord. Just got off phone with my doctor and he said the nodes came back negative and that he got all of it when he carved me up.

You guys have been soooo much help and comfort. Thank you all very much. I will point people to this site that have problems with this stuff. Question: I have been officially labled as someone who had a cancer growth. They say it has been cut out. Where did it come from and is it really gone or is it just that patch of skin thats clean for now?

I hope you dont mind if I stick around for awhile. 

Respectfully,

Mike

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mortalMike's picture
Replies 2
Last reply 11/8/2018 - 5:09pm
Replies by: mortalMike, ed williams

Hello folks,

I had the SLN test and the surgery Monday. The test itself was ok. (by that I mean as far as pain) Minor stinging. The guy (kid) doing the mapping said the closest nodes to the hole my dermatologist left in my chest and where the (draining) was going was on my left side neck/collar bone. The surgeon took 2 nodes out there for pathology. He then made that hole even bigger, pulled it together and stiched it. I've got about 3" stich job. Gotta say the end of the world could of happened and I would not have known. Woke an hour and fifteen mins. later.The first night not bad at all except the bandage is so tight it keeps me looking down. Next day my neck where he took the nodes was hurting and making my neck sore. 

Its been 3 full days since surgery now and am going to change bandages tonight. Node place is still hurting. For such a little cut it sure is uncomfortable. Surgeon said everything went fine and said " the nodes looked fine and normal". I guess thats doctor pep talk until the pathology results come in, right? Still havent heard anything about that yet. As you can tell I'm talking alot, nervous. Will let you all know as soon as I hear something.

Once you get the melanoma diagnoses and they cut it out and the pathology comes back negative are you done with it or are you just waiting for it to hit again? Ok, I'll shut up for now.

Mike

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Anonymous's picture
Replies 4
Last reply 11/15/2018 - 9:49am
Replies by: Anonymous, Janner

I need some clarification. I had a mole shave (not punched) biopsy from my back by a dermatologist in September 2018 and her pathologist diagnosed it as a "Severe abnormal mole." I decided to go to a second dermatologist where I had it completely excised and received clear margins. Nothing alarming came back on the pathology report after the second dermatologist excised it, they just told me it was gone. The second dermatologist then had their pathologist (who only looks at skin apparently) review the initial slides of the shave biopsy and he diagnosed it as "Melanoma in situ." I'm not sure who/what to believe. It sounds like a difference of opinions with the pathologists. It doesn't change the outcome...it was completely excised, regardless, and I need to watch myself closely and do 6 month follow ups. Right? I’m just confused as to why one pathologist would call it severe abnormal mole and one would call it melanoma in situ. Is there a difference?

Danielle Wilcox

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Scooby123's picture
Replies 22
Last reply 11/10/2018 - 5:45pm

Hi all been today for my results no evidence of disease. So can breath a while . Thanks for support. Xxx

SCOOBY x

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gregor913's picture
Replies 3
Last reply 11/8/2018 - 3:28pm
Replies by: lkb, jbronicki, Newmanbell

Hello all my melanoma warriars just wanted to bring a positive story to this forum. When I was newly diagnosed I would like to read these stories and also the information I learned from reading this site about this disease was immense. Thank you for this site.

I was diagnosed at 34 with stage 3b ulcerated melanoma in Oct 2015 on back. Did 4 rounds of Yervoy 10mg after having it resected with a clnd. Got really sick during treatment and was in hospital for over a week.

3 years N.E.D.

Trust in God and stay positive!

Gregory

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RichInLife2's picture
Replies 7
Last reply 11/10/2018 - 8:54pm

Well, it happened. Just when I was getting all cocky about having no side effects after three Opdivo treatments, I go and get a side effect. Up until last Thursday, I was feeling great, although I was losing weight, which I attributed to switching to a mostly plant-based diet. Then Thursday and Friday, I start feeling tired, I’m thirsty and I’m urinating frequently. I thought the frequent urinating was due to my BPH, but I wasn’t sure about the fatigue and weakness. Saturday and Sunday were each progressively worse and by Monday I contact my care team at DFCI. They have me come in, test my blood and tell me my glucose is 672. Good news, they know what caused my symptoms; bad news, I now have type I diabetes. 

I’m currently in hospital (just transferred from ICU to gen-pop) while they try to stabilize my glucose levels. I now have a new member of to add to my care team. I met with an endocrinologist here (I hope to find one more local to me, if that’s possible) who tells me I’ll need to control my glucose with insulin shots for the rest of my life. I’ve met a lot of nice nurses and doctors here, but I’ve yet to receive a visit from my primary oncologist (yes, I’m pissed). 

So now, I’m facing the probable prospect of being taken off Opdivo. I’m not sure what comes next, but I’ve read many trials exclude diabetics. 

So, while I wait and wonder, has anyone else developed diabetes while on anti-PD1 therapy? Where did you go from there?

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