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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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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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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DZnDef's picture
Replies 9
Last reply 9/18/2016 - 5:46pm

I've been mostly offline since my broth4er's death and am not caught up with everyone.  I hope you are all proficient beast-takers now.  I had a setback.  After 4 years of confining the beast to my lungs it finally spread.  I noticed a lump in my right hand one month after my brother's death.  Followed  by more lumps just under the skin in August.  Before I could make it to a scheduled CT I woke with double vision and signs of stroke.  A CT at the ER showed 7 brain mets.  Started Taf/ MEK today.  Liver is clear so that's good.  Hope these drugs do gthe trick and go easy on me.  Hard to type.  Lack of control of left hand.  I had a good 4 years so no regrets.  Grief and stress will do a number on you though.  Don't worry, be happy.  That's the secret to good health!

 

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

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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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stevecathy's picture
Replies 6
Last reply 9/19/2016 - 5:42pm

Thinking of a second opinion. My husband is currently seen at ctca in zion. He has been on mek/taf combo for about 8 months . We have had ups and downs with side effects. Now he is having double vision. He has had 4 infusions of yerovoy, but then had Mets in transit so they immediately started combo. Just looking for possible 2nd opinion. We are in central Illinois so st. Louis or Chicago??? Any thoughts would be appreciated. Thank you

Cathy Jewell

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Travis G.'s picture
Replies 5
Last reply 9/20/2016 - 12:19am
Replies by: Anonymous, Aida Ballesteros, debwray, youngann, Gene_S

How can they tell you what Stage you are without the pet/ct scan results? I'm told I'm stage 3 after the SNB. Just wondering. Thanks.

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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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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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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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JoshF's picture
Replies 19
Last reply 9/21/2016 - 9:57pm

At airport waiting for flight to Houston, which of course is delayed. The blood test showed liver enzymes dropped significantly. That was great news...thank God. Bad news is I went in patient portal and read radiologist report from scan last week. Overall impression with out getting into details was "worsening metastatic disease". That hurt because with the 3rd and last ipi dose being 8/8, I have to assume I didn't respond 2nd time around after having great response in 2013/2014. I feel like though we tried hard in past couple months...nothing has stopped this dreaded crap and therefore nothing got done.

So I do Ct scan tonight at MDA, see Doc Friday, Brain MRI Sunday and then get moving into treatment phase next week.

Not that anyone has crystal ball but what are chances something shows up in brain a month after gamma knife? I've bothered Kyle with private messages for the past week with this stuff...symptoms to look for etc...Either way they will need to ask for PI override. I need the cells and see if I can start beating this back. I know others have been in far worse places but it feels like I'm trending there. Believe me I want to fight but I need the treatment to fight with me. Yes I'm starting to feel desperate. Anxious to get to Houston and get show on road. Not sure if I'll be posting, I'm tired of all the sadness and suffering I read here but know that I think of and pray daily for all of you. Much love, support and healing to my MPIP Family!

Be well!!

Josh

Let's work for better treatments....for a cure!!!!

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stotes's picture
Replies 4
Last reply 9/21/2016 - 3:34pm

I have Stage lV metastatic melanoma with latest scan showing one subcutaneous nodule and another tumor on my right glut max muscle.  Is it a bad idea to wait seven weeks to get into a trial for Opdivo plus epacadostat (IDO inhibitor)?  Or should I just start Opdivo alone?  I progressed from stage lll to lV while on Ipi and have to wait seven more weeks for it to be out of my system.  The trial is not randomized so I know that I will get the drugs.  I didn't choose watch and wait after surgery and radiation for stage lllC and now I regret it.  I feel like no matter what I do it ends up being the "wrong" choice and now I'm running out of choices.....  Christal 

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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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Marilynliz's picture
Replies 1
Last reply 9/13/2016 - 8:32pm
Replies by: jennunicorn

I am just starting my journey. I am looking at either Wake Forest of UNC. I would also appreciate any oncologist recommendations. I actually live closer to the Hickory/ Mooresville/Statesville area but would be willing to drive the distance for comprehensive care. Any recommendations would be appreciated. Thanks.

 

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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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