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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TexMelanomex's picture
Replies 23
Last reply 3/21/2017 - 4:29pm

Hey Everyone, I've been reading in here for weeks and finally decided to stop lurking and participate. I was diagnosed in late January with melanoma on my scalp. I'm 43 and have been healthy (military) my whole life so when the dermatology office called with the news I was floored. Thus far I have not had any treatment because I spent some time researching and decided to go to MD Anderson rather than have a local oncologist tackle this. I have been to MD Anderson once to meet with my oncologist and have had CTs of the chest, abdomen, and pelvis (all clear) and will have the wide exicision and SNB next week. While it was a temporary relief to get the CT results, waiting on procedures and answers is rough. I get the impression through these message boards that I better get used to waiting and watching and waiting some more.

My initial biopsy indicated that the tumor was 2.2mm deep, Clarks level 4, has a mitotic rate of 12, no satellitosis, no perineural invasion, and "non-brisk" tumor invading lymphoocytes. I have read what all of that means statistically and I have decided I don't care about the statistics. I feel like this is my fight and while numbers are important, my approach to this is more important.

I really appreciate all of the stories and insights I have read on here. I feel very confident in my treatment team at MD Anderson and I feel I am ready for whatever fight I have ahead of me (but this might be easier to say up front). This diagnosis, in its short time, has already taught me a lot, but most improtantly: Nothing is certain. Be nicer. Love your family and friends like there will be no tomorrow. Slow down. Breathe. My faith matters more than I realized. People can and will inspire you if you let them. Breathe some more. Being concerned is normal, feeling sorry for myself is a waste of my time. Sunrises have a new flavor and serve as a reminder that sunscreen is my new best friend.

Tex

 

Tex

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Dina108's picture
Replies 18
Last reply 3/20/2017 - 5:35am
Replies by: Sailor, Becky, CindyCo, Dina108, Bubbles, Anonymous, coltbnme, jyc

hi All: 

Just yesterday the doctor informed me that I have mucosal melanoma in my sinus (ethnoid). I had no symptoms, except for what I thought were sinusities--stuffy nose,slight nosebleed. now waiting for PET scan. Im in Richmond VA. Does anyone have any suggestions for support groups here. 

Please let me know what I should research -- everything is so overwhelming and in reading the posts, there are so many acronyms that pretty soon I am sure I will master. 

What should I expect in terms of testing -- they have the PET after which the treatment protocal will be set. 

What are some cutting edge treatments out there? What should I ask the doctor? No idea what questions I should even be asking. It's been a roller coaster ride. 

Any help and suggestions would greatly appreciated. 

Dina

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kim1224's picture
Replies 9
Last reply 3/17/2017 - 10:59am

Hi Everyone,

I am wondering if anyone could offer any help/advice about my dad.  It has been a crazy rollercoaster but I will try to keep it as brief as possible.

September - woke up with a bad headache, went to ER. Two days later diagnosed with brain and lung mets.  No primary was ever found.

October - had surgery to remove two larger brain tumors - all went well with the surgery. A few days later he suffered a partial seizure in left arm - Keppra increased.  Few days after that finger twitching - also put on Vimpat as precaution. Neuro never determined if that was a seizure or not.  Received 10 wbrt treatments (I have been very upset about this since day one due to everything I have heard/read about it on here and other places) I believe we were told because of the size of the larger tumors/tumor bed targeted wouldn't be an option?  Never made sense to me - especially coming from a reputable hospital but my parents accepted that and that's what was done...

November - During wbrt he started combo infusion.  Immediately after the second one he started having trouble walking and had lower back pain.  Admitted to hospital.  Liver elevated to dangerously high levels.  Put on high dose steroids and Cellcept.  Numbers came back down. Confusion set in, right arm limp, left arm stiffening.  EEGs showed no seizure activity.  Drs said it could be meningitis or encephalitis from immuno or lmd.

December - two spinal taps negative for lmd, sent to rehab to strengthen up to resume treatment, went back to hospital after almost two weeks because liver was elevated again, steroids increased

He has remained in the hospital since then and hasn't gotten worse but hasn't improved much either.  The most recent ct scan of the brain shows progression compared with scan in December of approx 5 mm in some lesions and one that has decreased.  No new ones were noted.  

On top of this, he has been on high doses of two anti seizure meds with no seizure activity except for the one October.  He has also been on a number of antipsychotics that have not seemed to help, but maybe even made his mental confusion worse at time or have their own whole set of possible side effects.  We have asked for him to be tapered off anti seizures or only have just one but that has not happened.  For us, it only adds to the confusion of what is causing what. 

We have never been given any definite answers just that they have not seen a case like this before and are not really sure what the cause is.  They are guessing it is either from autoimmune encephalitis and/or brain damage from doing radiation and immuno at the same time.  There was talk of rehab because they say they want him to strengthen before resuming treatment, but now we are hearing there is nothing else they can do.

We find this hard to believe because although he has not improved with his symptoms, the cancer itself has remined pretty stable up until this most recent scan.  We are beyond frustrated with the lack of answers at this point and the feeling that the doctors are just giving up instead of exploring other options.  Any advice or insight would be greatly appreciated.

Kim

 

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raeds's picture
Replies 2
Last reply 3/20/2017 - 9:33pm
Replies by: raeds, Anonymous

Hello  - 

I have  history of dysplastic nevi. 3 AMH were removed 9.5 and 5 years ago. Margins taken were 3,4, and 5 mm. No pigment regrowth in 3 & 4 mm margn nevi, so I may finally stop freaking out about these and my concern that doctor should have takn 5 mm.

Moving forward, I have had 2 or 3 severely atypical nevi. I just had one biopsied. My derm was certain via dermoscopy that it would come back mildly atypcial at worst. She was wrong - it is severe. My concern is 3% of severely atypical nevi that actually turn out to be melanoma on reexcision. My hope is that if dermascopically it only looked atypical, that it is truly a nevus and not a melanoma. 

I am spinning because I am concerned about the nevi removed with 3 and 4 mm margins 9+ years ago. If these were going to recur, would they have already done so? 

I really had myself convinced that my days of big excisions were behind me. I have so few moles left at this point, and get a full body check every 4 months, and go in if anything else concerns me. I did, in fact, have another derm look at this mole a few week ago.

i have  a 3 year old that has had a congenital nevus on his scalp biopsied. It came back "congenital nevus with random cytologic atypia mostl likely due to anatomical site". Path recommended removal if clinical atypical. 3 derms say it is fine, and to leave it. I have an appointment tomorrow with his pediatric derm to discuss reomoval now.

Any advise out there regarding my concerns for my 9 year old smaller than desired excisions, my current severely atypical nevus, or my son's nevus?

Finally, i have read frequently that a pathologist will call something severe or AMH rather than melanoma to support a patient in terms of insurance. This doesn't make sense to me as I would think it would open a doctor up to a future law suit if it turns out to be worse. Any thoughts? My OCD can use any help or guidance today.  Thank you.

Rae

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BrianP's picture
Replies 3
Last reply 3/14/2017 - 9:53pm
Replies by: Bubbles, BrianP

Stumbled across this trial tonight.  Seems like a pretty good option for those patients made NED through surgery and are weary of trying Ipi or interferon.

 

https://clinicaltrials.gov/ct2/show/NCT02301611?term=%22melanoma%22+and+...

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aziza's picture
Replies 2
Last reply 3/15/2017 - 12:48pm
Replies by: CindyCo, Anonymous

I am still new to melanoma, as it is a rare case in Thailand.

My mom, aged 77, has mucosal melanoma at her upper vagina, which could not be removed by a surgery. Now she is having a radiotherapy, external beam .

- Any ideas on how we monitor whether it is not spreading?

- How often do we need a PET-CT?

It is hard to make her not to worry about a radiation. 

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MichelleRHG's picture
Replies 6
Last reply 3/14/2017 - 10:18pm

My hubby may lose his job. We have had excellent insurance that allowed me to go to MD Anderson as "in network", covers my ipi and testing here at home,etc. HAS ANYONE HERE RECEIEVED TX FROM ACA? HOW HAS IT BEEN?

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/16/2017 - 7:28am
Replies by: Anonymous

I had two initial biopsies that were in situ last month, they were punch biopsies and followed by WLE.

Now they want to biopsy 3 additioanl sites, but they won't be punch biopsies, they will go straigh to WLE. I was surprised to learn of this from my doctor today, I can see doing additional biopies but to go straight to WLE was surprising to me.

Has anyone else been given treatment like that for suspicious sites? I haven't heard that this is typcial.   Do you just continue to have only WLE for every suspected site once you have an insitu?  

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newmanmark's picture
Replies 4
Last reply 3/15/2017 - 9:11pm
Replies by: Kim K, jennunicorn, Nemesis

Hello.  Has anyone had the conversation with their Oncogist about the risks of getting pregnant after immunotherapy?  I think the literature says to wait 6 months but I'm wondering if there is any research or opinions from Immunotherapy thought leaders on this?

My wife and I are praying that I get a NED status in the next 6 months and if so we were hoping to try for another child.

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Carybaum's picture
Replies 15
Last reply 3/17/2017 - 3:24am

Hi, all. 

i was diagnosed Stage IV Metastatic Melanoma with several mets in both lungs and liver in June, 2016. I am BRAF negative. Primary was on my right upper arm. The primary was fully excised in Aug, 2014. Started Opdivo in July, 2016. After 18 infusions, my latest PET/CT scan on March 10'th shows that I am NED. Our oncologist has, frankly, no idea on where to go from here. Has anybody out there become NED and continued the immunotherapy? If so, how long were you receiving infusions post-NED? Thank you and all the best in the fight. 

 

Regards,

 

Carybaum


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RitysMom's picture
Replies 1
Last reply 3/16/2017 - 7:11pm
Replies by: MaPerny

My sweet Kristine called me today and said she can now feel two of the tumors. So it's looking like she has stopped responding to Taf/Mek. She has an appt to see a melanoma specialist at MD Anderson on 3/27, but plans to call her local oncologist tomorrow and try to be seen this week. I'm assuming he will start her on immunotherapy...would her starting a new treatment affect her consultation at MDA? Or should she wait two weeks til she's seen by the specialist? Obviously I want her to do whatever it takes to destroy the cancer...I would be thrilled if they surgically removed the remaining tumors tomorrow!

Cindy 

Mom of the beautiful Kristine

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nicolepfeil's picture
Replies 7
Last reply 3/14/2017 - 8:49am

My husband was diagnosed with Stage 3 Melanoma that was located on his arm and in Lympnodes under his arm pit, His option at this point was to start Interferon 5 days a week for 4 weeks, then radiation, then an additional 11 months of Interferon 3 days a week.

We were told how horrible this treatment would be but decided to try.  

After one week he was pulled off of the treatment because it was affecting his liver,  He will be starting again in 2 days and at this point we are wondering if it is worth it.  He is so sick, he cannot leave bed  and is wondering if the 5% chance is worth losing a year lying in bed,

I am wondering if there is anyone on here that has completed the year long treatment, or any opinions on this treatment in general?

I realize everyone is different but as newbies to this diagnosis I am hoping to get any advice that is out there, 

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CindyCo's picture
Replies 4
Last reply 3/16/2017 - 3:26pm
Replies by: Anonymous, snow white, Bubbles, MaPerny

We got a second opinion with Dr. Hamid on Friday and he encouraged us to also get the Abraxane as planned because of the aggressive lung nodules.  He said that he couldn’t offer us any trials right now because of her liver issues, but that there is a trial being amended at UCLA in the future that will allow for Grade 3-4 toxicities (not sure which trial this is yet).  He is planning to contact Dr. Ribas and we will go from there. Dr. Hamid also hasn’t ruled out immunotherapy in the future.  He is taking another look at my mom’s liver numbers and wants to figure out what caused it—if he can figure that out, then the immunotherapy doors will open again.  So things are in the works, but we are more scared than hopeful right now.

So my mom started Abraxane today.  We pray that she will tolerate it well and that we will have a good response.

In the meantime, we are getting her tumor tested and are praying that there is an actionable mutation.  It looks like she is BRAF and KIT negative, so hoping for an NRAS mutation or a mutation that shows up and can be treated by other cancers.  We also have an appointment scheduled with UCSD which has both the I-Predict program and NCI-MATCH.  According to UCSD, I-Predict has more flexible criteria, but they offer both.

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keepthefaith11's picture
Replies 18
Last reply 3/28/2017 - 7:52pm

Hi everyone,

My dad passed away peacefully this morning. My mom was right there with him. Even though his brain tumors had gotten better from treatment his brain was clearly damaged.

Yesterday morning he ended up with pneumonia and sepsis. His oxygen level was only at 65% even with oxygen support.

The doctors are saying that the damage done to the brain was a combination between treatments and the numerous seizures he suffered. They had never seen a case like his and can't really understand what exactly happened.

At the end he was barely responsive and was getting gradually worse with each passing day.

I want to thank you for all your support in the past nine months. Much love to everyone and I will keep you all in my thoughts and prayers.

Annie

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Momofjake's picture
Replies 16
Last reply 3/16/2017 - 4:45pm

Hi friends,

I have been trying to post. It keeps saying error. 

Jakes body is nearly clean, but now he has brain Mets. He is doing SRS next week. He is alive, gaining weight, looks so good and happy. He says he is going to live. He just finished ipi. You gotta love this stubborn, no drama kid. 

Rita's loss broke my heart. And Paul. It's just so hard. I hope our good days shared are okay. 

Love to you my friends,

Kerri--momofjake

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