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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ET-SF's picture
Replies 18
Last reply 8/23/2015 - 5:45pm

Hi everyone,

 

There are two of us using this profile.  The patient is ET, and I'm her partner SF -- initials used initially for privacy.  I hope this is all OK.  We're in "divide and conquer mode."  ET is in the shower right now, scrubbing with a special antibacterial prep on her first of three days, preparing for her sentinel lymph node biopsy and WAE on Thur, August 20, and I'm getting us tapped in to this info community.  We're both in this together.  Obviously she has more skin in the game, so to speak.

 

ET got poked in the arm with a stick or branch less than a year ago, and the wound didn't quite heal right.  It eventually looked like a big blood blister.  Our primary care physician removed it and sent it off for a path. 
To everyone's astonishment, it came back a malignant melinoma.  It hasn't yet been staged, but based on the path report (included in our profile), it's almost certainly at least a III-something.  Nobody has said what sort of melinoma, but it would appear to me to be an amelanotic nodular melinoma.  The path report is rather ugly.

 

ET has been referred to a general surgeon for the sentinal node biopsy and WAE.  The surgeon is considered very good (I've seen her work -- truly impressive -- trusted by the local dermatologists), but she is not a melanoma specialist.  As we are ready to go, finding another surgeon would mean a delay.  As the initial excision left behind cancerous material that could be sloughing in the wound area, I'm not comfortable with any delays.  Should I be concerned?  Advice???

 

Depending on the findings of the surgeon, radiologist, and path lab, we will be referred to a physician (not yet identified) at Virginia Oncology Associates (virginiacancer.com).  If ET had leukemia, I would feel we were in very good hands.  However, there is not a single mention of the word "melanoma" in any of the physicians' profiles.  I don't think there's even a "skin" specialist.

 

Certain things have possibly been overlooked in these few days since the diagnosis.  First, there was no mention of a sentinel lobe biopsy.  ET's very concerned dermatologist insisted this work should be done BEFORE the WAE.  We talked this through with the surgeon, and that is what will happen.  We are uncertain whether this would have happened this way without the intervention of the dermatologist.

 

Next, the path report does not include any tests for the specific mutation.  This may be important for guiding ET's treatment plan later.  Can they perform this testing on preserved tissues?  Do we need live tissue?  The only remaining live tissue will be coming out of ET's arm on Thursday.  What should we do?  What tests should we have ordered?

 

We have physicals scheduled with the GP tomorrow.  As he is the referring physician, we'd like to have some good questions, requestions, and thoughts for him tomorrow.  We would appreciate any and all advice we can collect here.

 

Meanwhile, it appears that UVA (University of Virginia) is the closest facility with a first-rate melanoma center.  To be treated there, is it necessary to be accepted for a study?  Or is it possibe simply to be a patient on currently approved therapies?

 

Also what sort of imaging do we need done?  Is it standard procedure to do full-body PET and MRI scans, or do we have to scrap for these sorts of things?

 

So many questions, so little time.  Please help!  (Thanks!)

 

SF

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Jacqueh27's picture
Replies 11
Last reply 8/23/2015 - 9:24am

I have not posted in a while. My daughter is still plugging along after four rounds of Yervoy and now going on 6th round of Keytruda. Her tumor has shrunk from original 14 cm now down to 9 and while we hoped on her first scan after four rounds of Keytruda she would be able to get it removed, she has now been told she needs a year more of treatment. The cancer is still contained to liver - brain still clear and her numbers and LDH are all in normal range and she feels better than ever. They say that the heat activity is no longer considered "hot melanoma" which I'm a little confused about but they say that means activity is much lower. Does Keytruda take this long to fight this? Can anybody shed some light?

 

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momof4boys's picture
Replies 5
Last reply 8/23/2015 - 6:32am
Replies by: Jubes, Bubbles, momof4boys, kylez

So I was diagnosed 3b in June 2013 when it was found on my right calf. Snb tested positive so I had a complete lymphadectomy of right groin. In Oct I started Ipi and was able to complete all doses including maintenance doses. Since Im on a trial I get scanned every 3 months with a ct and every 6 or 12 with a pet. So I had a ct in May, Pet in June and both were fine. I had a ct yesterday that showed a lung mass on each lung plus the lymph nodes are enlarged. One was 1.4 cm and the other was 1cm. They have decided to go down my throat to biopsy the lymph nodes. I just want some input here, seems like pretty rapid growth. I'm wondering about this biopsy and the pain level with that as well as if it does turn out to be melanoma what path do you all think I should take? I'm thinking since these are over 1cm and there is lymph envolvement that it probably is melanoma. Any input here is greatly appreciated. I am a mom to 4 teenage boys and I feel like I need to be on top of my game here.

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Anonymous's picture
Anonymous
Replies 0

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jvictoria's picture
Replies 3
Last reply 8/21/2015 - 10:17am

Hi All,

Thinking of getting on this Trial... anyone one it? Thoughts / Words of Wisdom?

Stage IIIb Melanoma

Recent Axila Disection

Thanks!!!

Juan

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Charlie S's picture
Replies 4
Last reply 8/21/2015 - 7:18am
Replies by: rosa1, Bubbles, Rocco, Charlie S

It totally sucks that Jerry did not make it.  He definitely was one of the good guys.

Here is a link to his obituary from the funeral home.  You can send flowers or sign the guest book.

http://www.danielsfuneralhome.com/home/index.cfm

 

Godspeed, Jerry.

 

Charlie

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ET-SF's picture
Replies 3
Last reply 8/21/2015 - 12:52am
Replies by: stars, CHD, Fen

Hi everyone!

What a great group of people you are.  Thank you so much for your support, encouragemnt, and advice!  I'm sorry we haven't been more responsive.  We've barely had time to breathe.

I will see ET in about 15 min.  She is out of surgery, and the surgeon is thrilled with the outcome.  I'm pumped!

Based on the path, we were expecting a positive SLN, but it appears to be cancer free.  Confirmation will come maybe Tuesday when the lab comes back.  So I think we're looking at stage II.  Woohoo!

The surgeon will order up genetic tests to determine the mutation(s).  We have plenty of material available from the first excision.

Base on everyone's input here, we're looking probably towards Johns Hopkins, and I think we'll be able to get the local referral.  Lipson sounds like a great guy, but I know there are others too.

Anyway, we've got a lot more positive outlook this afternoon than we had this morning.

THANK YOU ALL!

ET and SF

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emano87's picture
Replies 1
Last reply 8/20/2015 - 8:58pm
Replies by: Bubbles

I feel so selfish writing this on these boards but I have spent majority of the day on google with no luck. I have not been diagnosed with melanoma but have over 100 moles and grandparents that have been. I recently gave birth to a beautiful baby boy and noticed several moles I would like to get checked out. I currently see a derm once a year for a full body scan and had one while pregnant but still do not feel confident in the results. I have several atypicals that I feel need to be removed but the Dr seems to think differently. I am looking for a new derm in possibly the Anniston Gadsden or Birmingham area that is very aggressive. I can not bear to think of missing one of these and missing out on my little boy.

Also, has anyone went to a plant based diet I thought about doing this to be preventitive.

All of your stories are so helpful !!! I know I am freaking out an prob about nothing but I am going to blame it on the hormoes.

 

Thank You,

Emily

 

I hope this is the right forum to post this on if not please forgive me. 

 

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Christine.P's picture
Replies 3
Last reply 8/20/2015 - 8:11pm
Replies by: Wheels1994, Christine.P, Anonymous

Greetings, everyone - 

I went in for pre-op testing yesterday (EKG, blood work, and chest xray) and will be having wide excision and SNB for 2 primary melanomas on Thursday. This morning, I got a call from my doctor saying they found a spot on my left lung and he wanted me back in today for another xray to make sure it was some kind of shadow or something.

My question is this: is this is a lung met, what are the potential treatment? I am trying to remain hopeful that there was just a problem with the x-ray, but would like to know what I'm up against if this is indeed a lung met.

Any information is appreciated. Thank you. 

Christine P. 

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DianaD's picture
Replies 9
Last reply 8/20/2015 - 4:54pm

I've just returned from the University of Chicago--the liver doctor I saw today was able to obtain my biopsy results for me, for the mole that was removed from my back last week, and I do not have melanoma!

Thank you for the encouragement and support that I recieved on this forum--I truly appreciate it, and you will all be in my thoughts and prayers. 

DianaD

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Hello everyone,

As many of you may have heard, this morning President Jimmy Carter announced that he has been diagnosed with melanoma and will begin treatment today. More information on his diagnosis and treatment plan can be found in the Washington Post article below. The entire MRF team will keep President Carter and his family in our thoughts.

http://www.washingtonpost.com/news/to-your-health/wp/2015/08/20/jimmy-ca...

Sincerely,

Adam - MRF

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bjorne's picture
Replies 2
Last reply 8/20/2015 - 12:37pm
Replies by: Anonymous
Dear all, 
 
Wife 38 years old had melanoma mole 5 years ago in her left breast, no mitosis rate, 0,62 mm, 2cm borders in the resection. No treatments after that, just 6 months and now one year checks 
and strong dermatologist revision of her moles.  During this time we had two kids.
 
 
On July she found a lymph node swollen in her right breast, she has had several ultrasound of breast, axila. 
 
Even we said she had a melanoma:
 
- First only did the ultrasound in the left breast.  The ultrasound doctor said no doubt it is benign. 
- Second was just this week, more serious, another doctor took a look to everything.   He said it is very small, and you have an smaller one in the right axila also.  
  She noticed also the pubis lymp node swollen, also very small. 
 
Doctors said to take a look in six months. I feel very anxious, sad, and trying to get information without scare my wife. 
 
Please, could you give me your opinions, next steps, thoughts, 
 
Thank you all, 
 
love
Bjorne
 

Bjorne - Husband

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stars's picture
Replies 14
Last reply 8/20/2015 - 10:56am
Replies by: Bubbles, Anonymous, Mat, jpg, becky15, stars

Hi

Just a shout out to fellow thin-mellers (well, I'm not thin, but I've had three thin mels).

This is a 2012 study from my home state, Queensland aka skin cancer capital of universe.

http://espace.library.uq.edu.au/view/UQ:275517

It shows 20-year survival for people with thin mels to be 96%.

Three things I like about this study:

- I like survival stat % beginning with '90'

- I like survival span of 20 (vs 5 or 10 years) - for me this translates into seeing my young kids into adulthood, not teenagerhood)

- I like that it's from 2012 and surely, if anything, things have gotten better since then with all the new therapies.

Hope some other MRFers get some solace from this (reasonably) good-news study.

Stars

 

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Patina's picture
Replies 4
Last reply 8/20/2015 - 10:09am

Hi,

My Mom had a followup, after a craniotomy done in late June, last week and was due to start Keytruda tomorrow. Unfortunately the followup with a internal review has determined the "nodule" found last week is a new brain met (1cm).  They want to do SRS as soon as possible.

My question concerns the timing of SRS and Keytruda. Has anyone had SRS just before starting Keytruda and can you tell me how many weeks you waited to start Keytruda?  

My Mom's already gone through Yervoy and SRS before and done really well for sometime, with the exception of a reoccurrence and now this. Keytuda was to be the next step, but there now looks to be two and I'm trying to figure out what the typical time is between treatments.

Thanks!

PS

Stage IV (Nov 2013), 25 brain mets treated to date, 1 more to go now. All else is great.

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