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
Replies 7
Last reply 6/6/2017 - 1:44pm

SITUATION:
- 43 year old male
- Diagnosed with Stage IIIC Melanoma 2-weeks ago
- Had SNB surgery 3-weeks ago to remove 3 primary lymph nodes
- 2 out of the 3 lymph nodes came back positive for micrometastases (just over 1mm each)

I'm currently scheduled to have a CLND surgery on Wednesday at UCLA w/ Dr Economou.  He seems highly reputable but I found some of his explanations to be a bit confusing.  I understand the difficulties giving clear recommendations for Stage III patients, so I don't fault him but I did seek out a second opinion.  I didn't question the need for surgery, it was really about getting more information.

I went to Angeles Clinic and met with Dr. Faries who was excellent. He was able to answer most of my questions without me having to ask, he just anticipated where I was going and provided full details in a clear, concise manner.

I'm considering switching to Dr Faries, but I have a tendancy to over-think things (analysis-paralysis).  Both Doctors have been performing the surgery for more than 20 years, 30+ years in Dr Economous' case.  

I'm sure they're both talented, although I have my suspicions that each doctors may have a Resident or Fellow actually conduct the surgery under their observation.

Further complicating things, my wife and I have already rearaged our work schedules to have the surgery this week.  Waiting another week is going to cause some complications, but nothing impossible to overcome.

QUESTION:
- Am I over thinking this decision?  
- Should I just have the surgery on Wednesday as planned?
- Is there a significant varaition in outcomes / methodology for surgeon to surgeon?

 

 

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Hukill's picture
Replies 13
Last reply 6/6/2017 - 12:47pm

I feel bad posting this as some of the people I have followed for the last year are not doing so well. In May of 2015 I had a stage 2B on the crown of my head, june of 2016 it became stage 4 with 1 tumor in my neck removed by surgury and 7 in my lungs that were non-surgical. I started the ipi/nivo combo in July 2016. After 5 combos and 13 nivo doses all 7 nodules in my lungs are gone!!!!!!!! I did have a 3 cm cyst on a kidney that was not there on my last scan but the radiologist and onocologist don't beleive it is melanoma and we will will look at it in 8 weeks and continue on the nivo every 2 weeks for now. So with the new spot on my kidney I am not as happy as could be but I will take it. For those who are not sure to go the combo treatment due to side effects for me it was worth all of them, even the 5 I am still dealing with everyday. I will always stay on this website as there are so many wonderful and very knowledgable people here. In 2015 I knew melanoma would show back up and it did, I expect it will again. Thank everyone for your support as it really means so much.

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Bubbles's picture
Replies 9
Last reply 6/7/2017 - 10:54am

Two abstracts addressing ipi 3mg/kg and 10 mg/kg in both Stage IV melanoma and Stage III now up on the blog.  Spoiler alert:  No difference in response....big difference in side effects at 10!!  Cool link to Dr. Weber addressing the same (as well as 4 other reports) in a video discussion from the Edster on the post and also on the "ASCO brain met" link below.  Are you listening FDA?????  Have a great Monday, everybody.  C

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-ipi-3-mg-vs-10-mg-in-advanced.html

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AliCat61's picture
Replies 5
Last reply 6/6/2017 - 4:02pm
Replies by: smiller, AliCat61, Bubbles

Roy was unable to get the 4th and last  infusion of the Opdivo/Yervoy combo last Wednesday.  After reviewing the results of all of the recent tests, there is some concern that the drug combo may be causing damage to his heart and lungs. He is scheduled for a PET scan early next week. The pet scan will more provide more information. If the PET scan indicates that he is responding to the Opdivo/Yervoy,  he may be able to skip the fourth treatment and proceed to the next phase, where he will receive just one of the immunotherapy drugs rather than the combination.  A single drug infusion should have far fewer side effects. 

Have any of you experienced any heart/lung damage and or extreme shortness of breath, etc.? The NP (doc was at a conference) said that if they gave him the 4th treatment it could potentially cause irreversible damage to heart and lungs. I must have been in shock because I should have asked so many questions...yet I didn't. I should have asked, is the damage caused thus far reversible? What are the long-term implications of skipping the last treatment? What's next if PETSCAN doesn't show response to combo? And what I really should have asked is  WHY DIDN"T YOU LISTEN TO ME WHEN I TOLD YOU 2 MONTHS AGO THAT HE WAS HAVING EXTREME SHORTNESS OF BREATH?

He's 70, and sometimes I really think they blow me off when I express these kinds of concerns, thinking to themselves, well he's 70, what do you expect?. But I know what's normal for him and what is not. I'm considerably younger (55) and I have plenty of energy to question. I'm pretty sure that most of his doctors consider me to be a giant pain in the rear, but I don't care! He needs an advocate, and I'm it.. The petscan is scheduled for Thursday the 8th and we see his doctor on the 9th. I'll be asking all of those questions and more then. As always I highly value input from any of you who have experience with these kinds of symptoms while on Ipi/Nivo.

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Replies by: AliCat61, Patrisa, Shannon B

Disrupting Cancer. This article is interesting reading and I found it to be very hopeful. It touches on the advances in cancer treatment, including targeted drugs, and briefly mentions some that are not yet available. Those of us in the trenches are probably familiar with most of the information in the article, but it might be very enlightening to those unfortunate souls who are new to our ranks, and might prove educational for friends and family. Just thought I'd share...

Note: If you are a reader and have a library card, please ask your library if they subscribe to Zinio for libraries, You may find that you can read the article (actually the entire magazine and other magazines too), on your computer, iPad, tablet, or e-reader without even having to leave the house, just by using your library card, 

Another side note: My husband, who has stage IV melanoma, and who is not very active these days due to feeling generally icky from the treatments, has discovered a love of reading. At the age of 70, his cataracts make it difficult, and of course, no one wants to treat his cataracts while his melanoma is being treated. So...I bought him a Kindle Paperwhite, which has a glare free screen. He can enlarge the font as much as he wants to make it easy for him to read the screen. This has brought him much pleasure and has helped him pass the time while waiting in doctors office and hospitals, and even helps get his mind off things at home when he is anxious. We got him a library card and he checks out books online o his heart's content, at his convenience, even when it's 2 in the morning and he can't sleep. 

Seeing what a comfort this has been to him, and being a bit if a techie ( a semi-retired IT person), I have been considering starting a charity project, and asking companies and individuals to donate their unused or possible non-functional Kindles so I can refurbish them and offer them free of charge to cancer patients and their caregivers to help with the waiting. I would of course also provide free tech support to help them learn to use it and to check out books with a library card, etc. I know it probably sounds a bit frivolous in light of all their(our) more serious needs, but I find reading to be a comfort to both me and my husband as we wait...wait...and then wait some more. I'd be interested in hearing what you all think about this. 

 

 

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Anonymous's picture
Anonymous
Replies 17
Last reply 6/6/2017 - 7:34am
Replies by: Anonymous, Rocco, Mat, marta010, raun cesar, Newmanbell, MovingOn

Hi - has anyone experienced recurrent acute anterior uvieitis bilaterally and headaches while being treated with ipilimumab? If so, was discontinuation of ipi reecommended? Thank you 

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Replies by: Anonymous, jennunicorn, AliCat61, Newmanbell, HopefulOne

Hi all,

First I want to thank you for all that you do to answer questions (especially Celeste!) from us terrified patients with this terrible cancer.  I am addicted to this site and read everything I can daily.

My husband is State IIIb, had a primary removed in 2012, a tumor off his chest earlier this year and 22 lymph nodes removed under his right arm with one just having melanoma.  They have him on 10 mg of Ipi as an adjuvant treatment.  He has done 3 treatments so far.  He is having awful headaches and his eyes really are very red.  I noticed fatigue is playing a roll here too.  We expected some type of reaction.

I realize some of the combos out there are for Stage IV, but everything I am hearing about Keytruda, has anyone had ths for adjuvant treatment or is it only for Stage IV treatment?  I had asked our doctor about the combos but he stated that was more for treating multiple tumors.  I hear so many good things about Keytruda and overall surval, wondered if this was possible for adjuvant.

Please pipe in the treatment everyone has endured for Stage III (he is Stage IIIb).  Thank ou.

 

Donna

 

 

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AVeryHopelessPerson's picture
Replies 8
Last reply 6/9/2017 - 5:26am

my boyfriend has been in the hospital for four-ish months for his stage III C melanoma. He has been recieving immunotherapy, and the melanoma did not spread. Nor it is in his blood. Today he has asked me if he should seek out another treatment (trials) in order to try to get rid of the Melanoma, but I am not sure what to say. It hasn't got worse, nor has it gone better. Is it a good idea to have him try drug trials? What if the melanoma gets worse or spreads throughout his body? I really need advice on this. Please note that at the moment, we are long distance. He is located in Sweden and I am in the United States. So I am not sure what type if Immunotherapy he is recieving. 

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Nick C's picture
Replies 13
Last reply 6/7/2017 - 12:56am

Just wanted to update where I am in my treatment. After being upgraded ( or is it down graded) to Stage IV in August 2015, I elected to continue observation. At the end of October, I had a node removed (golf ball size) that came back cancerous. A follow-up scan showed progression. After going thru all my options, I started on pembro the first of the year. I had a scan last week.The scan showed that all except one spot had been "resolved" or not found. The one that is still there has gotten smaller. There was signs of one new spot of uncertain significance (which we look at in three months). And today is my birthday.

Although I wanted to share some good news, I feel a little guilty in doing so. I know that there those on here that are much worse shape than me...some fighting for their lives and some that didn't make it.

I think about what my surgeon said...If you are going get melanoma, this is a good time to get it. Five to six years ago there was very liitle they could do. Hopefully,  the reserchers will be able to glean info from our individual treatments to be able to put togehter the pieces to find key in destroying mel.

You all are in my thoughts and prayers. Stay strong!


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MLDBlondie's picture
Replies 3
Last reply 6/3/2017 - 4:51pm

I was diagnosed in April of this year with stage 1A on my inner thigh. I've since had the WLE at the site and am recovering well. Also a squamous cell carcinoma on my chin. Both surgeries were done within 3 days of diagnosis.

I am meeting with an oncologist this week. My question is, what should I expect test wise? Since the surgery was considered "curative" should I expect any invasive tests?

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Bubbles's picture
Replies 10
Last reply 6/6/2017 - 1:35pm

Ok...so my brain is tired.  This is probably the longest and most complicated report I'll be putting up.  I combined what I thought were the most salient of the brain met abstracts here:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-melanoma-brain-mets.html  

Wishing peace and joy for each of you.  celeste

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judyk's picture
Replies 2
Last reply 6/4/2017 - 7:49am
Replies by: KG, foodie22

i was dx with naso/sinus mucosal melanoma 5 years ago i opted for surgery and radiation and more surgery to keep it at bay in my nose. now the PET shows 2 spots in my liver. i feel well but need to have a biopsy and then decide from there. i have been putting off immunotherapy since i dont have any of the markers and it is for skin melanoma. they dont have any specific treatment for mucosal other than use the immunotherpy for skin. recently, i am hearing that there is a 5 year survival rate for 20% of patients. hope that is true.  please let me know if you have mucosal and how you are doing. and what the treatment has been.

thanks   jk

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Shaneswife's picture
Replies 13
Last reply 6/5/2017 - 2:58am

It's with a heavy and broken heart, that after a lot of talking, Shane has decided to cease life sustaining therapies. He wants to spend what time he has left enjoying family. We have in home hospice supports being put into place. My heart is shattered but I understand that this has weighed heavily on his heart but this is the right decision for Shane. 

 

Janis

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waltonyoung's picture
Replies 3
Last reply 6/3/2017 - 12:00am
Replies by: Anonymous, SABKLYN, Shannon B

Hi everyone!

My name is Patrick and I recently got diagnosed with melanoma, stage 2. I am 20 years old and kinda nervous about all of this. I cannot seem to wrap my head around what is happening. One day I was with my friends and the next day I am on crutches with a huge scar. I hardly get sun being in college, and always wear suncreen. My surgery went fine, and 12 staples later they safetly removed all of it on my shin. Its very painful and not something I ever want again. However, this does not seem to end. I had 2 more moles removed and they were atypical so they have to go in and punch them out. One of them is not even a high sun exposure spot, its in between my 3rd and 4th toe. I need advise on what to expect. Is there any technology or methods out there to keep track of my moles, because I am extremely freckely? Will my future just be painful surgery like the last? How should I best avoid repeating getting melanoma? How often does melanoma repeat in a patient that already has it? I am nervous because I am the first person in my family to get this. The scariest part to me is not the melanoma or anything its more so my age. I do not want my future to be surguries, shavings, and doctors. Any and all advise is welcome. 

Thank you,

Patrick

Patrick Monroe

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Bubbles's picture
Replies 9
Last reply 6/5/2017 - 7:40am

Though it is with a heavy heart....I have begun plowing through what I think are the most pertinent ASCO abstracts for folks here.  There are many sites through which you can read the abstracts and reports as well as see videos of presentations and discussions for yourself and I encourage you to do so!  However, I will be putting abstracts grouped as they seem to read best, with pertinent background data if I have it, and my interpretation of the expert's jargon in red up on my blog.  The rough topics I have made are:  brain mets, ipi 3mg vs 10mg, outcomes after stopping immunotherapy, new combo's and meds (ipi with CD47, pembro with entinostat, nivo and anti-LAG-3), intralesionals, news for NRAS folks, and a few others.  

Here is the first installment - posted today:   ASCO 2017: Nivo or Ipi/Nivo combo in melanoma after progression on ipi or anti-PD-1

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-nivo-or-ipinivo-combo-in.html  

In honor of Jamie and Joshie....

I wish each of you well.  Celeste

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