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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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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adriana cooper's picture
Replies 2
Last reply 9/18/2016 - 2:41pm

and don't keep them waiting on their results (lab, scans, ect.)

 

Adriana has been having various issues for several weeks with pain and numbness in her shoulder, hips and legs but all pelvis, abdomen, chest, brain ct and mri's came back clean, so she was referred to physical therapy for possible pinched nerves?? A couple weeks in, she developed numbness and pain in face and slurred speech. Called in to oncologists office whom ruled out stroke/bells palsy as she still had control of muscles ect. Was referred to neurology, waited 2 weeks with no call back. She called oncologists office again. Neurology was called again, finally she was offered a last minute opening for this last Thursday. Unfortunately I had to miss a portion of the appointment (the part with the Dr.) Adriana's impression was that he was on the more than 50% side that it was cancer cells in her CSF sitting on some of her cranial nerves causing the problems. He ordered a lumbar puncture for Friday which was to be followed by a second if negative results for improved accuracy then followed by MRI of the brain and spine with double contrast. He said he was determined to get to the bottom of her issues as she had similar issues a year and half ago that different neurologist explained as side effects of Ipi (only one (negative) lumbar puncture was done at the time.) Friday's procedure was done by a LPN? As the Dr. was away at a conference for a week+. The procedure went fine although he said there may have been a drop of blood. I commented the fluid was pink or peach colored and it seemed I remembered it was clear the last time. I assumed that was due to blood??He told us as it was Friday no results probably until Tuesday and to call on Wed. if no call. If negative results then second lumbar puncture likely on Thursday or Friday. So after the usual waiting stress over the weekend and beginning of the week, no call on Tuesday.

Now to the meat of things. Wednesday at noon Adriana calls the office and is told the Dr. will have to call her back with the results. No call back by Thursday morning. She calls again and is told results would have to come from Dr. (as if we didn't already know what they were by now) and that Dr. was away at conference and that they had made an appointment for her to see him next Wednesday. She hung up and told me (not in a happy tone I might add) we were going down to get the results from the records department. I suggested I keep control of the cane she now is using lest someone get hurt. On the way down, the office calls to tell her of the future appointment and she tells them that we are on the way down there now to get the lab report. They said they would have it at the desk for her but no one was available to go over it with us. No problem on our part. On our arrival a nurse practitioner (that we worked with on her brain tumor) was made available to see us.

My main point of this post is DOCTORS—We absolutely understand that we are not your only patient and you are very busy and want you to go to conferences to be as knowledgeable as you can be. We also understand that people react differently to news and the preferred method to give and hear it is in person. BUT--- PLEASE DON'T MAKE US WAIT FOR RESULTS. We are not naive to our situation and most people with advanced disease have some education on the subject and that you have likely educated us as to the likely scenarios before the testing was ordered. Most of us know that many radiology reports and lab results (even if preliminary) are available in short order, often within an hour. Leaving us to speculate or worry any longer than necessary as to the results does more harm than good to our well being. A short phone call followed up by an appointment can do wonders for us.

That aside, We were told that firstly one good aspect is that Adriana's MRI's have been clear and any treatments would have a better chance of working. Her CSF was discolored (as I suspected) and did have cancer cells in it. Leptomeningeal Carcinomatosis. In addition to her appointment with the Dr. on Wednesday to discuss treatment options she is scheduled to consult with neurosurgery about possible ommaya implantation. One potential treatment may be intrathecal Depocyt. (haven't found anything about this drug here on MRF (aka Cytarabine) any help. Only chemotherapy was mentioned, no mention of any immunotherapies. I asked if administration of the drug was similar to the treatment offered at MDA in Texas or if treatment similar to their offering was available here it seems as if the nurse practitioner was put off by my question and it seemed that she said we were welcome to investigate what they had there. I took that with a grain of salt at that point as we are now trying to gather as much info as possible.

As you imagine this past week I have been combing through posts on this site, and others as well as the general internet trying to gain information. Although difficult I have tried to have a measured reaction to prognosis and survival information ranging from 4-6 weeks with no treatment to 6-8 months with treatment as well as the the optimistic reports of persons treated at MDA surviving 20 and 10 years to date.

Adriana is on Social Security Disability supplemented by Medicaid here in Washington state and we have very limited income. Please be aware that we are forever grateful for the assistance she is getting and we do not believe she would be alive today with out it. I am unsure if going some where out of the area is feasible financially or even desirable at this time due to her son's schooling.

I have to say that although somewhat prepared for this latest development it does have me quite shaken. Any help, advice, or direction is greatly appreciated. Any advice for additional questions to ask the Dr. are also appreciated.

 

Rob and Adriana

Adriana

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/18/2016 - 2:31am
Replies by: Anonymous, Patrisa, MoiraM

Let me preface this conversation with the acknowledgement that I am likely letting the melanoma anxiety beast get the best of me. But I am worried and if you honestly think I'm being a nut ball please, PLEASE tell me.

I was diagnosed with SMM in july- stage 1a. Shortly after my WLE I started feeling a crackling in my chest and mild cough but assumed it was just me being anxious. It continued but very mild and seemed to be getting better- so I ignored it.

This week I developed pain with swallowing- sharp, sub sternal and the feeling in my chest is coming back intermittently. I know the most likely explanation is gerd/heartburn but it really is mostly when I'm swallowing. I made an appointment to see my pcp next week if it's not improving on prilosec.

The issue is that I really don't want a pet scan, endoscopy, biopsy etc. From what I've read my symptoms are close to those of esophageal cancer but melanoma, let alone early stage melanoma, rarely metastasizes to the esophagus.

Since you all have been around this site a lot longer than I have I was wondering if anyone on hear has heard of mets to the esophagus? I know primary esophageal melanoma happens but a met seems super unlikely, right?.... right?

Thank you!

Alc

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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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