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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CHD's picture
Replies 2
Last reply 7/8/2016 - 6:57pm
Replies by: CHD, Kim K

So PET CT is clear except it lit up around one ovary and slightly into the vaginal area.  PA says this is "normal," though.  I don't get athe official report of results until my followup visit next week, but I am wondering why it would be normal for an ovary to light up on one side?  This is my third PET CT in 3 years and this did not happen on any of the others, though last year there was some kind of  "soft tissue anomaly" on the left, as well as a benign-looking left ovarian cyst on a regular CT, which did NOT light up on the followup PET. 

As someone with a history of vulvar melanoma, the area just seems a little close for comfort, but I am all for thinking it's normal!!  I am also a little confused.  And of course it is going to bug me until my visit next week!  Any ideas?  Do certain areas normally "light up" more than others?  Are ovaries one of them?  Do we know why? 

Cheri

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Patrisa's picture
Replies 4
Last reply 7/9/2016 - 10:33am

Hey guys,

do you think it is likely that you get an almost complete response on keytruda, just some minor focal activity in sub q met and total disolvment od lung mets and pet/ct that showed no new mets...in just 3 months! And after only a month a potential new met? Can keytruda work so wonderfully on old mets but still a new one can appear in such a short period of time?

i know everything goes with this beast, but can't really understand that you can have a complete response on one hand, and some new stuff on the other...

all in a month?

My fathers next pet/ct is in august, but i can't wait that long to know... What scared me was a marker which in higher than normal (s100)...

it could be nothing, but i'm worried...

another q, if something new poped up, does that mean that keytruda failed? Cause it didn't, it worked wonders since Jan this year...

thank you...

Patrisa

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CharmaineD's picture
Replies 3
Last reply 7/9/2016 - 10:01pm
Replies by: susanspotless, CharmaineD, Anonymous

I know for many people on here they have travelled a long road with Melanoma but I am just sharing this for others like me to whom this is all brand new and who also have a decision to make. Being told you have a suspicious mole is very scary. My dermatologist decided to not excise but to monitor again in three months, I just did not feel comfortable with this and for two months it caused me anxiety. A week ago I decided to take control of things and requested it to be removed. Removal date set for a months time but I got lucky and on Tuesday got the call from the surgeon they had a cancellation and did I want to come in. Of course I did. It was a big mole and with the margins I was set to lose a relative chunk of skin on my back. However it was really painless and was over in half an hour. Small needle pricks and felt a bit of pulling and tugging, but absolutely no pain. Today it is a bit uncomfortable lifting or stretching with my arm because of where the stitches are situated but it is really not a big deal. Just glad it is done. A bit nervous waiting for the results but I feel I have taken control of the situation. I amnot a fan of unnecessary surgery but the watch and wait approach was not working for me. I know everyones experience is not the same but if excision worries you at all, my experience is it was really easy and painless. 

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keepthefaith11's picture
Replies 7
Last reply 7/8/2016 - 1:45pm

I just got off the phone with his doctor in Europe. She said he has 13 brain Mets that they could see on the MRI. They are between 2 millimeters and 13 millimeters. She started talking about whole brain radiation therapy. Apparently they don't do gamma knife at that hospital. There is however a hospital in the country that does it, but usually for no more than three mets.
I kept pushing and she agreed to send his scans down there for a second opinion and see if they could do it for him. Not sure this is going to work out. It is so frustrating when you do not have options.

They are doing a PET CT scan to see if there is any additional spread. His blood work was completely normal. I am assuming they checked the marker for cancer in his blood. Forgot to ask about that.

She wants to start whole brain radiation on Monday, but she said she would call me tomorrow when she finds out about the second opinion on gamma knife.

Does anybody know if whole brain radiation would get rid of tumors this size? And can they then do gamma knife on any remaining tumors?

She said they usually start targeted therapy or systemic therapy 2 weeks after radiation. Would that still give you the abscopal effect?

Thank you for your help everyone!!

Annie

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ashley_k's picture
Replies 7
Last reply 7/17/2016 - 10:00pm
Replies by: ashley_k, Anonymous, stars, MoiraM

So, strange question, does anyone recognize or celebrate the anniversary of a diagnosis or treatment?  a year ago I was diagnosed and this past year have been telling myself that reaching on year of NED is something to celebrate.

My baby is not quite a year old but is healthy.  It is something I am so very thankful for, a true blessing.  I worry since she has fair skin like me (not like the husband).  

This past year I've had 15 biopsies, one melanoma, two benign and the other 12 mildy atypical.  Every three months I go through the phase of taking and comparing photos, searching for the outliers and tracking any odd symptoms I may be experiencing.

I'm still terrifled of being in the sun for long periods, wear sunscreen and hats religously and even spent a ton of money on expensive long sleeve & swim tights with spf protection but I'm stlil afriad of being in the sun.  

Does the fear ever go away?  My mother asked me if I was ever going to have a tan again.  She asked when I would wear shorts and told me that the sun is 'safe' before 10am and after 4pm.   My husband tells me she is from a different 'generation'.

The good news is that insurance covered genetic testing.  Apparently I do not carry any of the common melanoma related gene mutations that the company was able to test for.  I am hoping that means good things for my kids and I do not have to be as concerned, right?  I think it also means melanoma was probably related to UV exposure most likely, right?  I served in the Navy and flew in airplanes and wonder if I may have been exposed to more UV/radiation? 

 

Ash

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Tomorrow is my moms first day of trail for Epacadostat and Opdivo (nivolumab).. We are nervous.. yet can I even use the word.. excited.. It has been 5-6 months since we found out about the stage 4.. and other then Gamma Knife a few weeks ago this will be the first treatment that addresses those invisible but seen on scans mets... Going from the information and diagnosing and planning stage to actual treatment....

Any suggestions for infusions.. what helped deal with nerves or helped with the after affects.. 

Also curious if anyone else on here has experience with epacadostat?

Best to all!! 

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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.  Awaiting immunotherapy. 

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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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