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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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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Anonymous's picture
Replies 1
Last reply 9/15/2016 - 9:58pm
Replies by: Anonymous

Hi everybody:

I was wondering whether you know of any good mole mapping or fotofinder services in Los Angeles or Southern California?  Also, I was wondering if these places take patients that are not high risk?

Thank you!

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Hukill's picture
Replies 6
Last reply 9/15/2016 - 7:12pm

My first 44 months(was supposed to be only 6 months) in the Army my face was exposed to radiation almost on a daily basis with plastice safety glasses as my only protection. Ten years later I had my first basel cell while still on active duty. That was in 2002 and until June of 2015 I had 15 basel and squamos cancers removed from my face area. In June of 2015 I had 2 melanomas, one on my forehead and a stage 2B to the lower left of my crown. The stage 2B took 3 surguries and I was left with a huge hole in the back of my head. The PET Scan was negative. On June 8th this year while drying off after a shower I felt a knot in my lower left neck and immediately I knew what it was. That was on Friday. Monday morning I called my onocology surgeon and he asked If I could come see him then. I live 3 hours away from Audie Murphy VA Hospital so I left to go see him. He scheduled me for surgury the next Monday and a PET scan that Wednesday. The Pet scan results came back before my surgury. The results were not positive on the knot in my neck but had multiple tumors in both lungs consistant with melanoma that were not there in my last PET scan a year earlier. The knot in my neck was matatisized melanoma. The diagnosis was stage 4 non-surgical mataisized melanoma in both lungs. I have had more than my share of horror storys dealing with the VA over the years but with my cancer they have been excellent. I am the first veteran at Audie Murphy hospital to receive the yervoy/opdivo combo mainly because I am the first veteran whose overall health was good enough to risk the side effects. The cost of these drugs for my treatment is $800,000 and had to be signed off by a finace board which only took 2 days. Within  a month of my diagnosis I received my first dose of drugs. I had my 4th and last combo on 9/9/2016. I now have 4 doses of opdivo then back to the combo. The VA has really came through on my treatment. Before my first treatment they gave me presciptions for steriod cream for the rash and steriod pills  that I could take if serious side effects developed but could only take I they told me to. I have been very lucky on side effects. After the first I did get a rash on my arms, chest and shoulders but only 3 or 4 spots itched and no burning. The steriod cream took care of the itch. I had a lot of fatigue the firat 4 to 5 weeks and ran fever for 6 weeks which is just now going away as it comes and goes. I took motrin every 4 hours to keep it under control. I did not have an appetite the first 4 or 5 weeks and lost 27 pounds. I tell people nothing beats the melanoma diet, all you have to do is wake up to lose weight. I have continued to work with usually working 3 to 4 days a week. I spent 3 days in the hospital running test for infection due to the fever but it was determined the fever was just a side effect and no infection. My dr did a CT scan at 8 weeks due to several chest xrays looking good. The scan had several tumors so small they could not determine if they were gone or not, 3 tumors were smaller and 2 were slightly larger. My guess is that 27 days passed between my PET scan and my first dose of drugs so I assume the tumors had continued to grow and have probably skrunk. I think I have been luckier than most on the side effects as I have been mowing the yard, and still doing all the things I did before my diagnosis. I am looking forward to my scan at 14 weeks.

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TeachinKansas's picture
Replies 4
Last reply 9/15/2016 - 1:32pm
Replies by: jbronicki, Joycem, debwray, Anonymous

I am having a wide local incision and a sentinal node biobsy done next Friday.  I REALLY want to go see my son compete on Saturday.  What are the chances I will feel up to it?

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rabbits68's picture
Replies 14
Last reply 9/15/2016 - 12:22pm

After 17 months on Mek combo, it has outsmarted the melanoma. Scans showed progression back into the bones. So I am being put on the Ipi/Nivo combo. Anyone care to share experiences with those drugs?
I know God's got this and I keep thinking about a song that says Learning to Lean on Jesus. That is the only true source of strength.
Lisa

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/14/2016 - 10:15am
Replies by: Hukill, Treadlightly

i recently had surgery to have a clarks level IV removed and just got the path back have not been to doctor yet since surgery but in my path report it says reperative changes consistant with previous operative site,lentigious,incidental findings, margin free . thats all it says what does this mean??? whats incidental findings

bandit1000

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/14/2016 - 8:45am

Has anyone here ever had a baby after being diagnosed with melanoma? Any reoccurrence? One dr told me no more babies and the dermatologist said she had never heard of that and she didn't see a problem with it. My husband and I want a big family and it is breaking my heart thinking of not having more kids. Please any advice or links would be helpful! I've been researching so much but can't find much information!

thanks everyone in advance! 

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Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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Aida Ballesteros's picture
Replies 8
Last reply 9/13/2016 - 11:17pm

My dad had just being diagnosed with in situ melanoma on august, he got the mole and some good skin removed, but i am worried sick of the chances of the cáncer coming back as in a mole or something else, do you think we should make an appointment with a melanoma specialist for some extra tests? What are your experiences with in situ melanoma?

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