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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Ellenb's picture
Replies 16
Last reply 5/11/2019 - 5:02pm

Hello, Everyone,
Thank you all for the support you give on this site. I’m brand new here. I am waiting for the results of the Castle Test-tissue was sent out a week ago. My doctor does not want to discuss pretty much anything until we have the results. I’m the kind of person who likes to prepare ahead of time. Could anyone please share with me what has happened to you once you received your results? Thank you so much.
Ellen

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ed williams's picture
Replies 10
Last reply 5/12/2019 - 1:11am

Love the new lay out, but kind of wondering why patient forum is placed where it is? Would be nice to have top row billing!!!

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201Don's picture
Replies 8
Last reply 5/10/2019 - 9:45pm

I have been lurking a while and it's time for me to post. I was diagnosed in July 2017. Had original site and three nodes removed
and all came back clear (margins and nodes). Original staging was 2b. I started quarterly CT and PET scans and was fine until early
January 2019, when A nodule appeared in my lower left lung (7mm). In February I had a diagonal resection to remove the nodule
and margins. The nodule was Melanoma. So now I am stage 4 and can now be treated with immunotherapy. I just had my second
infusion with Opdivo. Two down 10 to go.. So far the only issues I have had with it have been extreme fatigue and nausea. The nausea
is not that bad, but the fatigue is tough. I have had fatigue non stop, there are times when it is less severe but
it is always there. All in all I am lucky. As far as we know I am cancer free and this treatment will hopefully help me
stay that way. I was told if I did nothing I was looking at 80% likelihood that Mel would be back, but if I did 12 rounds
Of Opdivo that would drop it to 35-40% likelihood. I think that it is worth it. So my question is about the fatigue. Are there
things to do or try that help minimize it?

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chris0815's picture
Replies 2
Last reply 5/6/2019 - 4:33pm

Hi, I was staged as T1a 0.6mm SSM 6 months ago, but because of a higher S100 last month they did a CT scan last week. It turned out that they have found a 7mm blurry lung nodule which could be malignin or benign. They dont know and will repeat CT in 8 weeks. Has somebody experienced something similar and am I now stage 4? I'm scared...

Thanks and cheers, Chris

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Nick C's picture
Replies 23
Last reply 5/10/2019 - 12:33am

Hey gang...

After doing both Yervoy and Keytuda( twice), and three clinical trials,I was told that there are no new tials available. And if there were, my physical state would not be able to withstand any side affects...down to 115 lbs.

Hospice has been called in. I am still mobile to some extent, but have no energy or strength. My mind is clear but my body doesn't want to follow it's demands.

This is not my final post, but I needed to keep you aware of what is going on. I will continue my fight until my last breath. I know you will do the same.

Nick


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msnow's picture
Replies 5
Last reply 5/5/2019 - 9:57pm

Hi all, new to melanoma and so thankful for this message board. 

Do radiology reports usually differ from oncologists interruptions?  Trying to have peace of mind and direction when they differ?  

I am currently healing from a sepsis blood infection which caused many abscesses on my liver and spleen likely a result from a recent melanoma wide excision preformed by a plastic surgeon for stage 1a.   

Decided to consult with a experienced medical/surgical melanoma oncologist who is part of a well known melanoma center to do a follow up contrast CT Scan suggested by ER doctor.  Found it interesting when asked if I had prior cancer and you mention early stage melanoma the ER doctors freak out and automatically think spread.  

Just had the follow scan and the melanoma specialist showed me the scans and his opinion was less concerning than the radiology report.  Just received the radiology report and it states in regard to the liver  “findings are concerning for metastasis”.  Radiologist suggested PET or tissue sample can be considered if clinically warranted.  Thinking liver metastasis would show on a constrast CT Scan.  

My melanoma oncologist feels these two concerning spots are inflammation from the residual liver infection healing.  And wants another follow up CT Scan or if insurance approves a PET Scan in a month to check infection is resolved/liver functions are normal.  I’m sure the oncologist would have told me he was concerned and ordered additional testing sooner rather than later.  Right?  

Hope for some insight.  Thank you 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/4/2019 - 5:30pm
Replies by: Centurion, Julie in SoCal, Anonymous, Bubbles

initial melanoma mole nasty and colorful 2016 removed surgically, then lymph node biopsy postive, then lung nodules pos for melanoma, about to go trial meds then nodules stabilize, then yearly CT until 2018, all is good no treatment. Six months ago increased fatuige, downright dead tired. went to dr, after short process pep and ultrasound show large complex liver lesions and echogenic gallbladder both suspicious for mets.

Anyone here similiar experience? currently waiting on another appt for opinion on ultrasound and what to do next if anything. Any thoughts would be appreciated, never thought I would be posting here. Had it licked.


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KellyH's picture
Replies 2
Last reply 5/12/2019 - 3:01pm
Replies by: Johnjk04, Roberto

It’s been awhile since I have seen a post from Mike??

Has anyone heard from him???

Miss his quick wit and humor!!!

Kelly  

 

A Melanoma mom ❤️

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Hukill's picture
Replies 10
Last reply 5/8/2019 - 8:42pm

Had my first scans at 90 days instead of 8 weeks, NED!!!! That makes 21 months NED, 9 months since last nivo. Side effects are still hanging around but that is ok, fatuige is really bad though. I wish everyone fighting this gets good results from the treatment you are going through. Next scans, 90 days.

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Lucygoose's picture
Replies 8
Last reply 5/5/2019 - 1:29am

My doc said my scans look great! The original lymph node is much smaller and much less reactive with the PET contrast. There is no evidence of spread to other areas.  I’m all set for neck dissection surgery in Melanoma Awareness Monday!!!

i am hoping and praying the clinical trial continues to bring good results for the participants and we get additional treatments in our aresenal to fight this beast! 

Lucy

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regwash's picture
Replies 3
Last reply 5/6/2019 - 8:44pm
Replies by: Brinkley65, regwash, ourvan

So I posted a while ago with my story of being diagnosed stage 1b. Long story short, I went to the dermatologist on March 28, she took off a mole with shave biopsy and diagnosed me stage 1b: 0.92 mm Breslow thickness, mitosis rate less than 1. 

had my WLE and SLNB on Monday and the surgeon just called with the pathology results: WLE produced clear margins and no cancer was found in the lymph node. 

Thank you all SO much for the prayers and positive thoughts and encouragement. It helped me get through the uncertainty. 

Now just to concentrate on healing from the surgery and stay vigilant and pay attention to my body!

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Carlsbad317's picture
Replies 10
Last reply 5/4/2019 - 1:17pm

Made it to Huntsman and met with Dr. Hu.  She is a new addition to the Huntsman team, but specializes in melanoma and immuno therapy and worked at UCLA.

She was excellent with communication and explained diagnosis to treatment in very common language.  Right from the start she had my attention when she said I was stage 3.  Then my fear of the second opinion started to echo in my head as she stated she disagreeed with the treatment paln.  She felt it was too aggressive due to the sever toxicites such as diarreah, rash, fatigue and stomach issues.  Said that having to take immuno suppressents to contol side effects was not good.  Wants to discontinue combo treatment and only do one.  Stated in her experience it will not lessen fighting the cancer.

The Vegas team, incuding a doctor that is a melanoma speciatist that previously worked at Huntsman, disagreed and stated they have to be as aggressive as they can and it is stage 4.

Huntmans - cut treatment - stage three - and prognosis 3 -5 years

Comprehensive Cancer Center - full throttle with combo, stage 4 - and prgnosis 12 to 18 months

 

Both said it is my choice and one dr will support the other - I do not understand how different they options are.  Ifeel like I am back at square one.  I do not know how to make a decision based on the facts Iam presented with.  

Just Venting.

Hanlon

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tedtell1's picture
Replies 3
Last reply 5/3/2019 - 8:08am
Replies by: tedtell1, MarkR, Rocco

Greetings warriors;

I recently had cat scan on my chest/abdomen to figure out some stomach issues I have been having. They did not find any issues but did see a 4MM nodule in my left lung. I have been NED since last Spring and my last PET in January did not show this nodule. I emailed my onco about this as he did not order the test and would not have seen it, but what is normally done in a situation like this?

Thanks,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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ashleynb's picture
Replies 2
Last reply 5/6/2019 - 8:07am
Replies by: Bubbles, regwash

I was first diagnosed last March at age 30 with stabe 1b Melanoma on my upper/mid back. Since then I have had 4 other spots removed. 1 of which was Melanoma stage 1b, the others were just severely dysplastic. I still have my 3 month checks with the dermatologist, but at what point would a SLNB be needed? My dermatologist doesnt feel like its necessary since both spots were only stage 1b. When I asked how do you know that there isnt Melanoma anywhere else the response was "you dont. just keep coming for your skin checks every 3 months." Anyone else had experience with multiple stage 1 spots? While I am SO thankful they were caught early, it still causes a lot of anxiety with the unknown!

Ashley

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