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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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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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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RitysMom's picture
Replies 5
Last reply 6/8/2017 - 9:15pm

I am overwhelmed right now...Kristine had an MRI on her spine on Tue, just saw the radiation oncologist. Four tumors on the spine in the thoracic region. She's deteriorating quickly from numbness on Monday to now experiencing a lot of pain and unable to walk without help. The radiation onc is going to do one high dose of radiation tomorrow on the one tumor he believes is causing the most issues. But...he said he spoke to her local onc (not a mel specialist) and they both feel that immunotherapy will not help her (why?) and that she needs to start making end of life decisions. He actually said she is unable to be cured. She is scheduled to begin immunotherapy on 6/28 at MD Anderson. My son-in-law has left a msg for her dr there, but he's out til Monday. I don't know what to do! Kristine is in Foley, Alabama. I'm in Southern California. She's flying out here on Tuesday to spend a week with us before our whole family goes to Hawaii for a week. The dr said she should continue with her travel plans to make the most of her time left.

Can she do taf/mek again?

Any help would be appreciated!

Cindy 

Mom of the beautiful Kristine

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jennis3b's picture
Replies 5
Last reply 6/8/2017 - 8:01pm
Replies by: MaPerny, jennis3b, Anonymous

I had my 6 month scans Monday after coming off of treatment. They found a few new things since the scans 3 months ago. They found a small lesion on my liver as well as small nodules in my left breast and right shoulder. They're being watched for my next scans. Doc says they're too small to do anything about now. Any advice?

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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Shaneswife's picture
Replies 12
Last reply 6/8/2017 - 3:46pm

I'm so devastated. Shane had a DNR put in place. I understand why but it's so very painful to live through this. Knowing I can't call 911 for him if he stops breathing during a seizure breaks me inside. We now have a hospice doctor coming to the house to treat Shane and nurses daily providing care along with myself and family. Shane kicked the psw's out of his treatment plan as he was too uncomfortable with them. 

I lay awake at night and just wonder if we'll get through another day together. His PPS is 50% so I doubt there is much time left. 

 

Janis

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adriana cooper's picture
Replies 5
Last reply 6/8/2017 - 3:16pm

First our thoughts and prayers are with all of you during these difficult times for many on here. It has been challenging emotionally for me with all that has been going that I have not posted much recently. Although we have been extremely fortunate to be able take a few steps back from that horrible edge that we were very near, my inner voice (as much as I try to ignore it and push it down) asks daily, is today the day that the other shoe is going to drop and we return to that cliff edge? We do still have ongoing issues but are coping. I remind myself one day at a time. Live life. Make fond memories. 

We will again be attending the symposium in Seattle on Saturday, although only in the AM as Adriana crosses more bucket list items off (and creating others,) getting to see her son graduate from HS in the afternoon. BTW she has just past 5yrs since first diagnosis, 3 years stage IV. Please introduce yourselves to us if you are there. We look kind of like this although Adriana has no hair now.

 https://drive.google.com/file/d/0B3UCziLUFYcHUFRxMzE2eHNuX00/view?usp=sh...

Also we will be in Los Angeles June 13-20 for a vacation/grad present/honeymoon get away, staying near Disney but traveling all about seeing the sights (any suggestions). Coffee anyone maybe? Jen-Snow White? Send a email harborhits@gmail.com.

Best wishes strength and peace to all on here. 

Adriana

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In the coming days I will attempt to post abstracts that relate to "novel therapies" and new combo's in melanoma treatment.  This first one has a bit of a retrospective in melanoma treatments as an intro.  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-pembro-plus-entinostat.html  

As I conclude in the post:  "....as much as I push for those in need of care....I will forever push in honor of those who fought even harder than the rest of us.  This one's for Joshie."

celeste

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zfishberg's picture
Replies 8
Last reply 6/8/2017 - 5:48am

It's sadly that I have to post another sad note after Shane's wife one.

After the second ipi/ nivo infusion Greg started experiencing problems with walking, fatigue, falls.

we went to ER on Friday and after the MRI was performed , the doctors concluded that they can't help him in any way.

He is on home Hospice now with additional help from the Home Care agency staff.

It's very painful to observe the rapid deterioration in his mental and physical abilities.

 

 

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RitysMom's picture
Replies 7
Last reply 6/7/2017 - 5:03pm

I thought I had read somewhere that you could start immunotherapy when on steroids in some situations. Is this true? Can anyone point me in the direction of articles, studies, etc.? My daughter just finished two weeks of WBRT on Wednesday. They tried tapering her quickly off the steroids so she could begin immunotherapy by 5/31. She ended up having a seizure and falling, so they went back to original dose. Now, they're tapering slowly over a month and she won't be able to start immunotherapy until June 28th! I'm so afraid that the tumors in her body can come back/grow during that time. Am I being unreasonable to think they could taper her a little more quickly, so she could begin treatment earlier?

Cindy 

Mom of the beautiful Kristine

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MikeW's picture
Replies 10
Last reply 6/7/2017 - 4:57pm

My first scan since starting therapy 4 short months ago was clear of tumors. I'm beyond thankful.

Since January, I've reached out with newbie questions and fears to get quick, informed and empathetic advice. I'm humbled by the melanoma experts and veterans here and I don't feel like I have too much to offer back as I'm still learning about how immunotherapy works and the disease itself. I know I'll continue to read this forum every day to get educated on what I now know will be a lifelong battle. 

Amidst the combination of those that have recently been diagnosed and, sadly, those that have succumb to this disease, I wanted to share my journey.

I hope this news provides more validation that the science is evolving and based on what I read here, on OncLive, Nature, etc. there is a lot of passionate research focused on melanoma.  

I was diagnosed in Jan '17 with small-ish mets to the right lung. I am being treated at The University of Chicago by Dr. Luke.  

My wife and I went to 4 different docs to understand the treatment options. 3 out of 4 recommended the combination therapy (Ipi/Nivo) as I was in good condition to deal with toxicity combined with the response rate vs the next best option.

Dr. Luke provided an alternative choice of Keytruda based on the lower tumor burden, lower LDH counts and good health. I was nearly in the epacadastat trial (combined with Keytruda) but had difficulty getting a relavant sample to ID the tumor variant. So, in lieu of another lung biospy, we forged ahead with the Keytruda.

My journey consisted of 3 treatments ande was paused due to auto-immune side effects of joint inflammation and elevated liver enzymes.

I have been assigned to a rheumatologist and we are continuing to monitor the liver and inflammation which is being treated with steroids.  I'm now able to walk more comfortably but still have stiffness from neck to big toes across all joints. The treatment is still paused and we'll reassess after the next scan in August. 

A huge thanks to those active on this forum, those that have responded to my questions and those that have answered them before I've even thought to ask. 

On of the best things I've read on here is "while I may have melanoma, it doesn't have me."  

Love and fight on...Mike

Mike

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Michellebelle's picture
Replies 1
Last reply 6/7/2017 - 3:43pm
Replies by: FaithRun

Hello everyone, 

 

I recently went to the doctor for a suspicious mole. Unfortunately, it's on my face. It was very tiny, black, and almost looked like a white head (but was black). It was new, had just showed up sometime within the last year on my cheek. I went in as a precaution since skin cancer runs in my family (but not melanoma). The doctor said it was black and blue with an outline of brown. It was a normal circle shape, popped up like a pimple. I think it was 2mm. 

She told me it's a 50/50 chance for melanoma or just a blue navius. I had a melt down at the doctor. I'm 29, about to be 30 next week, and I can't believe it.

Right now I'm playing the waiting game, which I'm not doing very well. I keep thinking about how I had swollen glands in my neck a few weeks ago, and really scaring myself. 

I'm just curious if any one out there has had a similar mole. Mine doesn't look like a clean cut case of melanoma. It could be a blue navius. I'm praying it is. 

But in the meantime, I'll be praying for all of you. When something like this happens, you don't realize how lucky you have it. I've never realized how much I loved my face until they wanted to start possibly cutting it all up. I hope my results come back ok, and I won't ever return to this forum again, but in the meantime, I'm thinking of you all, and wishing you all strength. Just the possibility is devastating for me. 

 

Thinking of you guys

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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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gowlandang's picture
Replies 3
Last reply 6/7/2017 - 1:25am

Hi, I am new to the board and this is my first time posting.

My husband was diagnosed with mucosal melanoma on his vocal cords in February this year. Originally the oncologist thought it was a wrong pathology report as they had never seen it before, but after retesting it came back with the same result. They suggested surgery due to concerns of restrictions to his airway, we opted to wait and have tests to find if it was anywhere else in his body, all came back negative.

When we went to see the radiation oncologist he told us that the surgeon suggested not to go with surgery but recommended radiation. After 20 sessions of radiation it is no longer bleeding and there are no breathing issues, his voice is horse all the time and the radiation has made him very fatigued. We now have to wait for a scan date and the next appointment is not scheduled until August.

Anybody out there in a similar situation? Any suggestions what other treatments maybe available ?

We live in Canada by the way.

 

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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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