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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Ajwells's picture
Replies 8
Last reply 7/9/2016 - 3:04am

I know everyone reacts differently, and different therapies act differently. I am just afraid the environment of my job will be extremely difficult if I'm not well.  I am a beauty advisor for a cosmetics company in a retail department store. I know it sounds easy. But I'm on my feet for 8 hours, and I have to sell. On my toes, fast talker, happy and excited. I'm already nervous about going back to work next week until I start therapy. I still have facial paralysis in my left bottom lip and of course the gigantic scar going down my neck from my neck dissection two weeks ago.  My job is about beauty and smiles and it's also cutthroat because we work around our competitors and we work on commission. I'm used to being so good at my job. One of the best in my region. 

Im afraid of being under par.  Or even par for that matter.  These scars and side effects are really bugging my self confidence. 

Sorry I guess this ended up being more about feelings and fear than cancer. 

But realisticslly. Most people are able to live their lives and do their jobs while doing immunotherapy, right? 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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cavsnut's picture
Replies 6
Last reply 7/7/2016 - 1:25pm

2 years ago I go the call from my oncologist office...still vividly remember as I sat at rhe kitchen table for hours, at least it seemed like hours, after she said "positive". I had a positive lymph node... albeit microscopic, it was still positive....well...life goes on I thought, and fortunately for me it has....today I had my 2 year CT scan, blood work and lymph node ultrasound, and remain NED from my stage 3a diagnosis... It was a very arduous decision to watch and wait , but fortunately the right one for me so far...God bless us all...

 

Craig

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Replies by: Anonymous, Bradley75, Janner, desertsun, Fen, Andrew1725, Prd10, mjanssentx

First off please don't question why my husband and I have chosen interferon, we believe that this is the best choice for us as this time, he is stage 3b, and in the off chance that this beast comes back we want another option of treatment such as yervoy of opdivo.  

I lost my 1st husband to this ugly disease after a long 14 yr battle so I know how this disease rears it's ugly head over and over and yes I know how advanced the treatments have come in the 7 years since he has been gone.

Now on to my question...as my 1st husband wasn't able to tolerate interferon.....so this is all new to me.  These treatments are taking a horrible toll on his memory, he already had problems with his short term memory to begin with as he is diabetic, but now it is horrible.  I swear sometimes in the evening he will check our back door 15 times because he doesn't remember locking it.  Just yesterday he tried making himself breakfast and left the gas stove burner on for like 3 hours because he forgot to turn it off and went and laid down.  I could go on and on for days.  I have set timers up to remind him of his med schedule because I have had to find work, and he can't work even if he had a job to return to.

Can anyone tell me how much memory returns HONESTLY, I've already been to hell and back once, I'm prepared to do it again, but I just want the truth this time, so I can be prepared.  

I completely understand if nobody here has any answers as you have all been able to move on to bigger and better treatments, I'm just sort of grasping at straws, most of the Dr want to sort of treat me a bit on the gentler side due to my past, and I understand that, we have one that is a real straight shooter but is out of the office for a few more weeks.  I'm just desperately looking for some answers.  My husband is only 50 years old, and I'm 44, not quite what I had planned for my 2nd marriage, but it is what it is I suppose.

Jen Spitz

Care giver 1st time around 15 yrs

2nd time around 6mths and chugging along

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Dear MPIP Community:

We still have 10 spots open for the Immunotherapy in Melanoma: A Celebration of Advances event coming up on August 12-13 in NYC. This event is for patients (their caregivers) who are taking or have taken any form of melanoma immunotherapy. Registration is requred by Monday, July 11th. The MRF will reimburse you and one guest up to $300 per person for travel expenses. Travel arrangements must be made by July 20th. Your one night stay in Times Square is also covered, as are all meals associated with the event. An agenda and the registration form can be found at the link above.  All questions can be directed to me at education@melanoma.org or feel free to give me a call at (202) 742-5945.. 

I hope you can join us!

Sincerely,

Shelby - MRF

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sister of patient's picture
Replies 6
Last reply 7/7/2016 - 8:48pm

Hi guys,

Just  a quick question on behalf of my sister Leisa - we found out in May that the ipi had gone after her retinas - so, she was put on two kinds of eye drops - prednisone and voltarin. The voltarin will be for life now but she's been tapering from the prednisone.  Last week her sight got really blurry again and yesterday's opthamology check revealed the prednisone has caused cataracts - only 6 weeks of these drops and cataracts - we could hardly believe it.

Anyone else experienced this? And, if so, how long did eye docs wait before treating? Usually, from what I understand, they make you go years sometimes before removing them ... doesn't seem fair with everything else she's having to endure!! I've already done a search on Celeste's blog too but no results returned there.

Thanks for any responses.

Best,

Barb

 

 

 

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Lee Parlier's picture
Replies 3
Last reply 7/8/2016 - 9:24am
Replies by: Lee Parlier, Linny

I am a first time poster but have read a lot of experiences with people fighting melanoma. Here is a little information about my melanoma journey.

SEPT. 2015: Diagnosed after melanoma 2B was removed from my left hip.

FEBRUARY 2016: Pet scan showed melanoma in the left groin area. Near the tumor site.

March 2016: Lymph node removal in groin which showed melanoma in 5 of the 8 nodes removed. Stage 3b

May 2016: Began yervoy (10 mg) every 3 weeks. I have had minor side effects but mainly fatigue and a little nausea. 3RD dose is due tomorrow with a pet scan next week.

Question:

After the second dose of yervoy I had around 20 subcutaneous spots pop up on my trunk mainly. They have a bluish look and about the size of a pencil eraser.They all popped up within a 24 hour period after my second dose. I have had opinions mostly that this is ipi doing its thing. I have also heard that it could be in transit melanoma. I am waiting on a biopsy result but was wondering, has anyone experienced this and what are they?

 

 

 

Lee Parlier

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Bubbles's picture
Replies 4
Last reply 7/6/2016 - 11:38pm

....I just wanted you to know that Miss Pissivity thinks of you often.

Cheers, my friend. Celeste

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Chance16's picture
Replies 17
Last reply 7/15/2016 - 12:29pm
Good morning everyone - Hope everyone is doing well and had a nice July 4th
 
Well, I had my visit to Moffitt and met with Dr. Khushalani and I feel it was for nothing and left me confused.  He said the mel had a 40% chance of reoccurring (standard) and he restaged me to 3B from 3C... big whoop.  He said I had four options (actually 5).
 
Option #1 - High dose Interferon for 1 year; which he highly recommends. He says it would reduce the 40% by 12% (big deal) and I would feel crappy the whole time from side effects. He also said that 50% of the country doctors are for Interferon and 50% for Ipi.
 
Option #2 - Low dose Interferon for five years....no way
 
Option #3 - Ipi; which he doesn't recommend for me for two reasons. One is that I have IBS and the concern for the colitis. The other is the study was done in the UK but the EU has not approved the drug or dosing where the US did and there is no long term data for survival until 2017.
 
Option #4 - His trial with high dose Interferon or Ipi to Pembrolizumab but I would have to get a CLND; which I don't want to do
 
Option #5 - Do nothing.  He didn't bring it up but I did.
 
So, I'm back to square one.  Right now I feel like screw it and not do anything...wait, watch and see.  The choices suck and for what real benefit????  Maybe I will one of the 60% and not the 40%.
Thank you again for listening to my rambling but I would appreciate any thoughts and suggestions.
Best to everyone
Patti

 

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Scooby123's picture
Replies 3
Last reply 7/7/2016 - 12:02pm
Replies by: jennunicorn, Maria C, JoshF

Hi Guys,

Sorry been away a while had a lot on and recovering from Gamma Knife. I went yesterday for my  3 month scans, results next Thursday so a week of worry. So me and my daughter of to majorca for long week end.

Hope you all having a nice day best as you can and i will let you know next week results.

Praying

Scooby123

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gigembritt's picture
Replies 2
Last reply 7/5/2016 - 9:35pm
Replies by: gigembritt, Janner

My recent path report says that my nodular melanoma is :

Clark level at least IV

Breslow Thickness at least .44mm

 

No what I am confused about it that it doesnt seem to match up.  The Clark level would put it past a depth .44mm right?

And why do they use "at least" ?

 

 

 

 

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Patrisa's picture
Replies 3
Last reply 7/6/2016 - 2:21pm
Replies by: Polymath, Patrisa

Hey dear friends, 

can someone please explain the importance of the mentioned marker?

my fathers last report states that his s-100 is  bordeline elevated, his ldh is normal and all other clinical signs are normal... Is this something we should be worried about or it maybe isn't related to mel? It is higher than his levels from the last check up 3 week earlier...

he is otherwise on keytruda and his first pet scan (in may) showed total regression of his mets in the lungs and almost completely gone soft tissue met which was really large...

any input will be greatly appreciated...

love,

Patrisa

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gigembritt's picture
Replies 11
Last reply 7/7/2016 - 12:34am

I have an apt at MD Anderson next week. But I was wondering if anyone could give me any feedback on my path report.  Most of these terms are way over my head.

Sections reveal a compound proliferation of melanocytes composed of atypical epitheloid cells arranged redominantly in nests along the dermo-epidermal junction and superficial reticular dermis, in association with host respons including lymphohistiocytic infiltrate and mild dermal fibrosis.  In addition, there are smaller melanocytees located adjacent to the larger atypical cells.  A HMB$% immunohistochemical study performed at the referring institution hightlights both the larger melanocytes in a patchy weak fashion, while the smaller melanocytes are essentially negative.  An immunohistochemical study performed on unstained slidescut from a paraffin block recieved using MART1/Ki67 highlights both the melanocyte populations and rare positivity for Ki67 is noted. Thought the atypical melanocytes have come nevoid features, due to the presecense of cytogic atypica and host respone, this lesion is interpreted to represent a melanoma arising in assocation with a nevus.  Therefore, the following parameters will apply:

Melanoma, invasive, nodular type

clark level atleast IV

Breslow thickness at least .44mm

Mitotic figures <1

TIL, Present, non-brisk

Associated melanocytic nevus present predominantly intradermal nevus

predominant cytology, epitheloid and nevoid

Surgical margins: invasive melanoma and nevus present at deep tissue edge. 

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Chance16's picture
Replies 35
Last reply 8/3/2016 - 4:53pm

Good morning - Recently diagnosed and I am stage 3c WLE and sentinel node biopsy done (node positive) PET/CT scans negative. They are talking about doing a CLND; which I don't want to do. Reasons: #1 complications (if the nodes come back negative I would have to live with the side effects of the surgery) #2 there are probably cells already circulating in my body #3 some literature say it doesn't improve outcomes.  I'm going to Moffitt Cancer Center in Tampa for second opinion. Has anyone else decided not to do it? Any feelings, ideas, suggestions?? I would appreciate any and all feedback. Thank you

Patti

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beneficii's picture
Replies 1
Last reply 7/6/2016 - 8:20pm
Replies by: MoiraM

It's hard to get a good look, but I was able to pinpoint the spot in question by recording a video with my back to the computer and putting my hand on. When I feel the spot in green, I notice that it feels kinda rough, crusty, different from the other moles on my back which I either can't feel at all or which have a smooth, flabby bump. In multiple pictures, not just this one, it looks like a mole but it's looks different from the others. Here is the image:

http://imgur.com/Y7NqVRX

I'm going to try to move up my appointment on 7/21; also, I want to get an earlier-in-the-day appointment.

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/5/2016 - 6:59pm

Doctor decided i should get scans every 6 months after yervoy. Do people usually get ct scans or pet scans. Thanks

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