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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AshleyS's picture
Replies 12
Last reply 1/24/2015 - 5:31am

Since being upped to Stage IV nearly 5 weeks ago, I've done a lot of research concerning alternative medicine and diet. I've also had a lot of people reach out to me who are melanoma survivors and other cancer survivors. It seems like all of them made drastic changes to their diet. Many were also treated holistically. What have some of you done concerning alternative medicine and diet? One problem I am having is contradictory opinions and research. It makes it difficult to know what to do.

once again, I'd appreciate anyone's advice! Thanks!

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MindyD's picture
Replies 10
Last reply 1/25/2015 - 7:17pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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Lauri England's picture
Replies 3
Last reply 1/23/2015 - 2:58pm
Replies by: MattF, Mat, _Paul_

I had a Dr appt last Thursday and found that the mass in my lung had increased in size by 30%.  I also learned I 5th rib on my left side is fractured due to Melanoma.  My doctor put me on Tafinlar + Mekinist.  I started this immediatly that day.  Now today it has been 5 days since I have been on the medication and the lump in my neck had decreased in size at least half and I can breath.  I go for my first blood work tomorrow.  I am feeling so much better.  I do have a nausea problem but I was having that before meds and I control with Zofran.  I am feeling very hopeful and actually see the doctor again next month unless I have any problems.  Thumbs up so far.  I would love to hear from anyone else that has tried this medication combination...

Don't sweat the small stuff. There are bigger fish to fry!

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AshleyS's picture
Replies 5
Last reply 1/21/2015 - 2:44pm
Replies by: Bubbles, kylez

Hey folks,

My doc recently received the results from my 50 gene panel. I already knew I was BRAF wild, but the panel showed I do have a NRAS mutation. what questions should I ask about this? Any other advice? Thanks!

Ashley

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Maureen038's picture
Replies 16
Last reply 1/21/2015 - 6:40pm
Replies by: Maureen038, Bubbles, Brendan, Mat, JoshF, Anonymous, BrianP

My husband compled his second VATS surgery this morning. His first VATS surgery was in October 2013. They removed a 4 cm nodule and a very tiny one. The right lung is cancer free for now and hopefully ever. He is at NIH and they are taking the tissue and making TIL cells to freeze in case he needs them.

There are a few very tiny nodules in the left lung and hopefully when he restarts Opdivo they will vanish!! We are feeling cautiously optimistic!! After so many ups and downs, it feels great to be in this place!! Best wishes to everyone!!

Maureen

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Jewel's picture
Replies 5
Last reply 1/21/2015 - 5:55am
Replies by: Mat, _Paul_, rick1981, Gene_S

Ken is going to have his 4th dose of Yervoy tomorrow. How long was it before you had a scan? From my understanding it is really the one taken 3 months after that they determine a responce? True, False, your experiences. Ken went into this with resected disease, but the node was bleeding and the size of a fist. Thanks for any and all help. They are also talking about possible maintanance doses?

Jewel

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Jsneathen21's picture
Replies 9
Last reply 1/21/2015 - 3:58pm

Dr called! No signs of the melanoma metastasizing in the lymph nodes!! All clear!! Should be cancer free now!!!

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JustMeInCA's picture
Replies 2
Last reply 1/21/2015 - 4:35am
Replies by: JustMeInCA, Janner

I have a question that I will ask my father's oncologist when I see him in a few days but that I thought I'd throw out here in case anyone has any thoughts or information.

My dad has now done four infusions of Keytruda, spaced three weeks apart. I've noticed that 3 days or so after each infusion, the fatigue hits him and his pain (both neuropathic and at the site of his leg tumors) goes through the roof. This lasts about 10 days (the Week of Hell for both of us), and then he's back to normal, better than ever. He then has about a week of feeling good before the next infusion comes.

The problem has been that he's so bad during the Week of Hell that he doesn't want to eat and loses weight. His appetite return afterwards, but he's still been dropping a couple pounds with each infusion. After his last infusion, we ended up not being able to get in until four weeks later, so he's actually now having two weeks, rather than one, of feeling good and has put a little weight back on.

What I'm wondering is whether it would be detrimental to space the infusions four weeks apart rather than three. He just turned 83, so it may be that the infusions are harder on him than on younger people; I don't know. But I'd like him to have the chance to have more of a breather between infusions and be able to enjoy life more, especially at his age when, melanoma or not, he can't count on a lot of years to come.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/22/2015 - 10:35pm
Replies by: Anonymous, Maureen038, JustMeInCA
Hello all,
 
 
 
my son - who is on Merck Anti PD-1 for 7 weeks started vomitng in he last few days. Is this a known side effect?
 
The drug exhausting him :-(
 
 
 
Thanks,
 

 

Mom

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Colleen66's picture
Replies 7
Last reply 1/22/2015 - 1:19am

Hi all.

I'll be brief.  I'm 3b after surgeries and Interferon, stable at two years this month.  Last chest x-ray in Nov. clear.  

In the last 3 weeks I have developed issues with my breasts.  Sequence of events are:  Swelliing left breast, at least a cup size, then pain in entire breast.  unusual puckering extending a bit downward from areola.  large masses of tissue formed, it's hard to describe but like a quarter breast would be very thick. the mass is very lumpy and the size of the masses will increase and decrease over a period of time.  I can feel at least 5 nodes in my neck but the area at the outside breast toward armpit is too lumpy and swollen to feel anything accurately.  The right side breast has followed the same evolution but with a two day delay. 

My Onc. scheduled a Diagnostic Mam and US for tomorrow.  I don't know whether to think that this is Mel or Breast Cancer.  Most benign issues of the breast involve breastfeeding etc.  I'll be 49 next month and had a hysterectomy in 1995 but still have ovaries.  No signs of menopause yet so I don't suspect this is Hormonal.  I scanned some breast cancer types and Inflammatory Breast Cancer fits.  I'm not convinced it's melanoma because of area and the pain, swelling and large masses involved.  

I know it's unusual to have biopsies during scan appointments but I feel like I can't leave that appointment without at least some type of biopsy.  Is this something they could possible do?  Should I become Miss Bitch and demand it?  With this evolving so quickly I don't thing a week between scans, biopsies, etc. is appropriate.  

I'm getting the tests done at the Comprehensive Breast Center (Stephanie Speilman Center) part of OSU Cancer Centers.  My Onc is at the James Cancer Center so it's all connected and I'm comfortable with that. 

This has happened so suddenly and quite frankly, I'm beyond concerned and pretty darn scared.

Any thoughts on this at all are welcome.  

Colleen

Live!

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My neck tumors are pressing on my throat now all the time. If feels like they are obstructing my throat. Last Saturday I made the mistake of eating solid food and I literally almost choked to death. Now I can't eat much. I have to sleep in recliner for my back but can't hardly sleep anymore with this stuff pressing on throat waking me back up all the time.

Any ideas what I can do for relief?

im supposed to start radiation tomorrow Monday but he says it will get worse before it gets better. I never did hear from my med onc surgeon as to why he couldn't surgery it.

my anxiety is through the roof. Even just sitting up and doing nothing I start choking. I think I only have a couple days fight left in me if I can't get relief.

i am so angry at myself for allowing that med onc to delay the biopsy 29 days. Stupid mistake. I didn't have this issue nearly this bad back then.

Artie

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Jsneathen21's picture
Replies 4
Last reply 1/18/2015 - 11:35pm

I had a sentinel node biopsy on January 13th almost 6 days again now also had a skin graft on my lower shin so my calf and foot are wrapped up in a splint.. My question is was anyone achey at all? I'm not really swelling at all but my upper thigh muscle is super achey ... I thought this was weird.. Do you think it is muscle swelling from surgery!? I looked up Lymphadema and I am pretty certain it's not that as I said the swelling really isn't even there.. Just kinda achey.. Thanks in advance hope your responses kill some of my anxiety !

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POW's picture
Replies 5
Last reply 1/20/2015 - 3:05pm

Some of you may remember Don Lee of Worcester, MASS. Don was diagnosed out of the blue with Stage IV including brain mets almost 2 years ago. Don and his wife Janet fought valiently. He tried every available treatment and benefitted from most of them. Surviving 2 years with a widely disseminated melanoma is remarkable and he made the most of his time. He got to dance at one daughter's wedding and to see his first grandchild born and begin to walk. He enjoyed walks on the beach with Janet, downsizing to a gorgeous condo with no upkeep, and celebrating their 40th wedding anniversary and Cecelia's first Christmas. But eventually the cancer won out. He passed last Thursday. Here is a very nice obituary for Don Lee online. 

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Eileensulliv's picture
Replies 10
Last reply 1/20/2015 - 1:30pm

In 2006 I had a rather quick battle with melanoma in my back. I had WLE and SNB done at University of Chicago Hospital and was considered cancer free. In October 2014 the area between my melanoma scar and the scar under my arm from the SNB swelled up, and was red and painful. I have lymphedema in both arms, so reaching the area is difficult. I saw my oncologist who said it could be an abscess, so she prescribed antibiotics. She said to be safe I should have a CT. The CT was done about a week later, after antibiotics already took effect. The technician was commenting on the lump of my melanoma scar, and I told him that is not where the pain was, it was off to the left. When I got home and saw where he put a mark for the scan, I called to see if it was done in the right spot. My onc sent me to see a surgeon, and the surgeon said the CT only showed scar tissue. She felt around my scar and said everything was fine. I told her my scar and my back feel "tight" lately, and that I felt like something was there. She said I was fine. Two weeks later, the area starts to swell again. My onc was out of town, so I saw the nurse practitioner, after they started me on a different antibiotic for two days. I was very firm that I needed some answers, and wanted this thing taken out! The nurse practitioner definitely felt something, and ordered ultrasound. She said it could be a lipoma that is just getting irritated and infected because it is right on my bra line. The ultrasound technician took some pictures of it, and my onc said I should see the surgeon to have it biopsied and removed. I finally got in to see the surgeon after the holidays, and she did a core needle biopsy, which came back as melanoma. They sent me for a PET scan, and the onc gave me the results two days ago... The spot in my back lit up, as well as in my bowel. She said I should see Dr. Sharfman, a melanoma specialist at Hopkins. Yesterday the surgeon called and was discussing the scan results with me when she said the spot in my lung... What spot in my lung!?! Apparently my onc failed to mentioned there is a spot in my lower right lobe that just barely lit up, and could be nothing at all, or it could be something. I know my onc and the surgeon are very well respected doctors here, but I have really lost faith in them... Am I crazy? I feel like this could have been caught two months ago! And has anyone been treated by Dr. Sharfman? I know Hopkins has a strong melanoma program, and everything I have been able to research on him seems very positive.  Sorry for the long post, but I am really having a hard time believing my doctors now, and am wondering if I am justified. 

Eileen Sullivan

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