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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snoopyinoc's picture
Replies 17
Last reply 9/17/2016 - 11:39pm

My husband has stage IV melanoma.  Petscan showed mets in his liver, lower back, and shoulder. He had 4  combo infusion of nivolumab/ipimumab. His most current petscan showed NED. He now has to go every 2 weeks for infusion of nivolumab only. I'm writing about the side effects he has been experiencing. After the first infusion he had no side effects, after the second infusion he rashes, and after the third infusion he had rashes, severe headaches, lost of appetite, and severe fatigue. He was prescribed oral steriods which has helped with these symptoms. But recently he has noticed blood is his urine and will be seeing a urologist. We've read that long term use of oral steriods is not good for you so he has been trying to get off them. It has been almost 2 weeks since he stop taking the oral steriods. He feels constantly fatigue and does not seem to have an appetite today. Has anyone experience symptoms similiar to my husband?

Emi

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Aaron's picture
Replies 4
Last reply 9/17/2016 - 9:52pm
Replies by: Aaron, KAF

I hope I am not calling you out but was wondering what you found out.  

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Jubes's picture
Replies 3
Last reply 9/17/2016 - 8:10pm
Replies by: Bubbles, Jubes, jamieth29

Just asking for a friend who had a Mel removed a year ago and now has multiple brain and lung mets. He has had radiation and now having laser knife surgery  

he's in Vienna and I'm sure he must be getting the best advice but how long after the brain surgery can you start immunotherapy?

i am anxious that he should start asap

anne-Louise 

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Buddy0513's picture
Replies 5
Last reply 9/17/2016 - 6:51pm

Hello everyone!

I am new to this forum and am posting on behalf of my mom since she isn't a fan of computers!

Anyway, it is a long story so I appreciate anyone who reads this.

 

Back in July of 2015, my mom had a vaginal polyp that was discovered upon post-menopausal bleeding. When it was removed and tested, it was positive for melanoma (no stage was given), which is apparently very rare. She went through surgial procedures to remove this polyp and was OK.

Fast forward to July 2016/beginning of August 2016, she had become very sick with symptoms similar to food poisoning. After going to the hospital, scans etc...they discovered a grapefruit size tumor on her ovary and smaller tumors throughout her abdomen region, nothing on any other organs (which was determined by a PET scan).

We were referred to an oncologist who gave the options of either ovarian cancer or melanoma, depending on the test results and biopsy. He also stated how he didn't see any of this being life-threatening since it has not spread to vital organs regardless of diagnosis. If she was to wait and avoid treatment it would catch up with her, but he tried to assure us it would be ok. At this time also, her CA-125 levels were 10x normal (about 390) and LDH was high as well (I cannot recall this off the top of my head). When the biopsy was completed, the results turned out to be stage IV melanoma and it was BRAF-negative.

When speaking with this same doctor, he did not refer us to a specialist (the hospital we are seeing does not have one apparently), he basically gave us the side effects of Keytruda and how poor it has of a performance (30% compared to 70% for the pill if she was BRAF-positive), and would not even provide a prognosis or even fall back on anything he had said at the previous appointment!  After mentioning Keytruda, he didn't talk about trials either should she not react to the drug. They have not provided any support and have submitted everything for insurance to approve, but we are still waiting to start treatment (this has been going on over a month now). This doctor also failed to write the correct place they took the biopsy due to the reasoning of "handwriting was too hard to read"...We honestly feel they just see $$$ rather than looking at my mom as a patient. 

We have decided to go for a second opinion as I have read here often on the site (with a melanoma specialist!). I guess my main question for you all is, what can I do to bring her spirits up? This has sounded like a death sentence to her and she is very down. I basically took a semester off of school and stopped my entire life to come help her, I told her I am not here to bury here I want to help anyway I can! We have not had any support since she was diagnosed (I have been sharing many stories from people on this website, especially the Charlie Stage IV roll call thread!), which has helped to some extent. Has anyone else here had any experience with melanoma on the ovary either? I haven't been able to find many stories similar to hers, all of the doctors she had seen are baffled which hasn't exactly been a great help either.

Thank you for reading, I appreciate any advice and support during this tough time.

Melissa

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stotes's picture
Replies 18
Last reply 9/17/2016 - 5:51pm

Just wanted to reach out and hope to hear from others dealing with Stage IV as I am devastated and heartbroken.  First diagnosed as Stage 1A on L thigh in Feb 2008 and had wide excision wih no other treatment.  Almost exactly eight years later found a lump in L groin and found to be metastatic melanoma.  Had all superficial inguinal nodes removed and three were positive for melanoma and extranodal extension.  Had radiation to that area and started Yervoy at 3 mg dose in adjuvant setting (Stage lllC).  After first dose of Yervoy found a lump on right upper back but negative for melanoma.  Had two more doses of Yervoy and the lump grew back and is now testing positive for melanoma.  Awaiting PET scan on Monday.  I am BRAF negative.  I am completely devastated by how quickly I progressed from Stage lllC to Stage lV while on Yervoy.  I live in South Dakota and have been fighting insurance to get a second opinion but have been denied.  I don't have access to top melanoma specialists and feel desperate for some advice about what to do next.  I just feel like I have had the worst case scenario at every turn this year and I am terrified to find out what the upcoming PET will show.  Any advise will be appreciated - thank you!

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Jubes's picture
Replies 8
Last reply 9/17/2016 - 5:36pm

Hi guys

i have a friend with glioblastoma who just had the brain tumour removed but has been given two years to live if she does radio and chemo now. Julie's last post got me thinking to look for clinical trials for her on clinical trials.org

just wondering if any of you happen to know where there are any trials or where the best doctors are in the us for brain tumours

thanks

anne-Louise

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Hi all, 

I had a shave biopsy done this done this week at the dermatologist. It was for a mole in the middle of my back that I had honestly never noticed before.  I have never had a biopsy done before and I have been absolutely terrified waiting for the results.  I've had trouble eating and sleeping because I have been so nervous.  Last year, my mom had stage 1 melanoma, and made a complete recovery after surgery.  However, I'm scared that this mole could actually be stage 3 or 4 cancer because I have no idea how long the mole has been there.  I've attached a picture the mole that was taken about 3 weeks before the biopsy.  Ignore the redness on my back, that was from an allergic reaction.  How bad does this mole look?  I am so scared.  From what I've read on the internet, stage 4 has no symptoms, so I'm wondering if I may have had it. Thoughts anyone? Am I crazy?

http://i1146.photobucket.com/albums/o523/melody_mcfarland1/Mobile%20Uplo...

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jennunicorn's picture
Replies 15
Last reply 9/17/2016 - 11:12am

Had another PET/CT scan today. Good news: the lung nodules are shrinking, so no mel there!

But, there is a lymph node in my left armpit that grew 2cm (measures 2.5x1.0cm) and lit up (it never lit up before). SUV uptake is 7.7. Never had uptake that high before. Not even really famliar with what a "high uptake" is. So, question for the veterans that know this stuff... is that high? I'm not too worried about it, maybe I'll need a biopsy, who knows. Tumor board will review next Friday and I'll find out what they suggest. There's also a new left groin lymph node that grew and lit up but that uptake is only 4.2... still more than I've had before, but, compared with 7.7 it doesn't seem as concerning. I know PET scans can have false positives and I also know that Ipi can be creating more reactive lymph nodes, so, that's why I'm not really freaking out over this stuff. Also, when did freaking out ever help me? I'll tell you: never. :)

As always, sending lots of positive vibes to all of you, thinking about everyone going through their own struggles and roller coaster rides with mel.

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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My husband is being treated for Stage 4 Metastatic Melanoma.  Had the initial spot removed from his neck 8 years ago....and this past May (2016) he had some terrible symptoms that led to removal of a lesion on his cerebellum followed by a week of radiation on the mets on his brain (3-4).

He is currently being treated for mets in his chest and abdomen as well using Mekinist and Tafinlar (at Moffitt Cancer Center).

I know there are people out there that are living with this disease long term and some that are long time NED.  It would be terrific to know those people are out there.

 

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Julie in SoCal's picture
Replies 12
Last reply 9/17/2016 - 1:14am

Dear friends,

Yesterday I talked with Rock Star Doc and while I still don't know the pathology of my tumor (path report hadn't come yet,) we have a workable plan.

Plan A is for me to enter the NY-ESO-1 trial (ID-LV305-2013-001) if my tumor expresses the NY-ESO1 protein (only 25% of melanoma patients express this protein). If I do not have the NY-ESO1 protein, then I will enter the JAK-1 trial (INCB 391101-107).  Either way, I'll start one of these trials next Wed.
 
Plan B is to try to enter a TIL / ACT trial and it will only kick in the event that I progress while I am on one of these Plan A trials.  It also assumes that I have enough tumor to qualify for the TIL / ACT trial Right now I have one 16mmx19mm lung tumor. The first evaluation of Plan A will be at 12 weeks after start, so I'm fairly confident that we'll catch any progression earlier, rather than later. 
 
Given all the unknowns, (and there are so many!), and all the limitations, this seems like a good way forward.
 
My process for making the decision was this:
1) freak out, pray, talk with friends and family, calm down, (breath in and out!!).
2) Learn about the science (read, ask questions, watch videos).
3) Research potential clinical trials on clinicaltrials.org, Search by geography, Download trial info and create database of possible trials. Figure out which trials I could possibly qualify for and exclude those that I don't. Having already had Ipi and Pembro automatically disqualified me for some.  Also being allergic to iodine (CT contrast juice) kicks me out of others.  
4) Read the proposals for this "short list" of trials. and keep praying, and talking to my friends and family (with more breathing in and out!!)..
5) write questions for Rock Star Doc based on "short list" search. This includes both general and trial specific questions.  Talk with RS Doc.
6) take leap of faith (God's got me!), choose one trial with a few back up plans and directions based on contingencies, continue to pray and talk with friends and family (continue to breath in and out!!).
 
I'm not sure this is the best way to go about making this decision, but it helped me create a sense of control and agency in the process, and this is critical for me to be able to go forward well.
 
Thanks for your help in this crazy process!
 
Shalom,
Julie
 
 
 
 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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MoiraM's picture
Replies 5
Last reply 9/16/2016 - 4:19pm

I had my scan results a week ago - still NED so I am now one-third of the way to that three year milestone.

I went to see my endcronologist today. (My anterior pituitary gland stopped working on ipi and no one thinks it will recover.)

I have been trying to get my cortisol replacement dose right for a year now. The 'textbook' replacement dose was too low and my requirement each day varies, even though this is not 'meant' to happen.

Great news, my consultant has approved what I have been doing - 8 mg prednisolone a day and a 'quarter-up' (e.g. 10 mg) rather than 8 mg on bad days, when I have headaches, muscle pains and feel 'wobbly'.

Also I have followed up on another clue from someone else and investigated my replacement thyroxine dose. My tests put me in the middle of the acceptable range (my T4 was ~14 pmol/L). He suggested pushing it up to nearer the top of the range. I am now on 75mcg levothyroxine one day and 100 mcg the next, my T4 is ~16 pmol/Land I am less tired. Hopefully the two are connected because I can probably go to 100 mcg everyday, aiming at a T4 of ~18pmol/L, which may mean more staying power.

At this rate I will be able to keep my job!

Thanks to everyone on here who were supported when I posted about struggling with being chronically ill. It helped me get my head in the right place for my consultation.

Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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FishermanCoop's picture
Replies 1
Last reply 9/16/2016 - 3:41pm
Replies by: debwray

Hello I had a spot removed off of my right shoulder. It was non symmetrical and a 2cmx1cm area.

Diagnosis:

ATYPICAL MELANOCYTIC PROLIFERATION, SEE NOTE.

NOTE: This lesion is likely compatible with junctional melanocytic proliferation with severe atypia. While not fully diagnostic, some features of melanoma are present. An early evolving melanoma,therefore, cannot be ruled out.

MICROSCOPIC DESCRIPTION:

A proliferation of severely atypical melanocytes is noted at the dermal-epidermal junction. There are nests of different sizes and shapes and single cells noted. confluence of juctional melanocytes is seen. The lesion lacks overall symmetry. Dermal fibrosis is present. Solar elastosis is marked. Mart 1 stain with adequate controls in highlights the atypical melanocytes.

 I was asked to return to the dermatologist and she did a WLE and removed all tissue down to the muscle and sent that to the pathologist. waiting for the second report now. My dermatologist said "we cant say it isnt melanoma so we are treating it like it is."

I feel like I am a little bit pregnant. Thanks for any help.

Clinton

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Lyric17's picture
Replies 36
Last reply 9/16/2016 - 3:03pm

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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jmatchock's picture
Replies 7
Last reply 9/16/2016 - 1:08pm

My dad is his 3rd week of the high dose interferon.  He doesn't want to continue and quite frankly, either do I.  He is suppose to start the low dose interferon self injections next.  He is in a high state of confusion.  He has not clue what is going on.  He doesn't eat and has a hard time sleeping. 

I know everyone reacts different but does anyone have any advice.  I hate seeing him like that.  He is by himself and I go to his place everyday to help him out.

 

Thanks in advance.

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/15/2016 - 10:23pm
Replies by: Anonymous, miaka618

Hi all-

 

I have a question in regards to PET scan results.  I was diagnosed stage 3B earlier this year.  Post CLND right groin.  Currently in clinical trial and have received 5 doses of Keytruda thus far.  On my recent PET scan it was all clear except for the following note:

FDG uptake in the right adnexa likely 
 

reflects a functional ovarian cyst. This finding is centered on 
 

CT transaxial slice 158 where the SUV maximum is 5.23. This is a 
 

new finding since the prior PET/CT scan. The area of abnormal FDG 
 

uptake measures approximately 11 x 10 mm. There is no new FDG 
 

avid lymphadenopathy in the groins, pelvis, retroperitoneum or 
 

the mesentery there are no FDG lesions in the liver or spleen. 

My oncologist has initially mentioned that I will not need further follow up of this since this can be expected with a premenopausal woman.  I am awaiting follow up as I have emailed for further clarification.  The SUV seemed high to me.  I don't want to jump to conclusions however I do want to be very aggressive in investigating.  Thoughts?  

 

 

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