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
Anonymous
Replies 2
Last reply 12/6/2018 - 9:42pm
Replies by: lkb, sing123

Thank you all so much for your responses to my query on radiation for head and neck. My local radiation guy wanted to do both, but when I went to Mayo in Jax, Dr. Richard Joseph (who sits on the national board and participates in establishing protocol for melanoma treatment) advised against radiation to the neck, saying that it would be too aggressive at this time, especially as my last PET scan did not show cancer. So, I am going forward with the radiation to my head. The tech described it to me as the electron type, which is neither photon nor proton. 

I am reasonably literate, but there is so much to learn and research in navigating one’s care as a patient! 

I really appreciate the feedback from you all. And am very happy that I got a second opinion. Now I feel like I can embrace the treatment. 

 

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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I had my appointment today and the derm just looked at the mole and then looked at it with those glasses things on she diagnosed it as an atypical Nevus. Is it possible she’s wrong or am I just still freaking out for no reason

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Amanda's Mom's picture
Replies 3
Last reply 12/14/2018 - 6:19am

Amanda has been on all of the "protocol" treatments.  She has done really well on the Cotellic and Zelboraf combo, until now.  Multiple tumors in the lungs and almost double in size since September.  We see the Dr Monday for the "plan".  Possible trial..    I am trying to stay positive, while my daughter feels that she is starting these next months as the end.  She also has a new pleural thickening. I can't make sense of that.

Thank you

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lindy303's picture
Replies 6
Last reply 12/8/2018 - 1:14pm
Replies by: lindy303, MMH, AN8, Janner

Hi,

Recently diagnosed with invasive superficial spreading melanoma. The Breslow depth is <0.8, but MR is 1.  Has anyone on here had a sentinel node biopsy with a thin melanoma?  I realize it's not normally indicated, as the risk of a positive SN is about 5%.  But still, that 5% makes me worry! 

 

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VinceMart's picture
Replies 4
Last reply 12/14/2018 - 1:17pm

Well, I started ipi/nivo on Monday after having SRS Friday before.  So far, I have had back pain to where i could not sit, stand or lay down, which moves around and as of yesterday sharp groin pain on my left side.  My visible tumors continue to grow.  Unfortunately, I had to start a streroid due to the pain almost bringing me to my knees even on pain meds.  I am hoping this is just the storm before things start to calm down a bit.  I definitely progressed fast on my wash out period coming off the Braftovi/ Mektovi.  They told me things could get alot worse but wow, I am a little surprised at how weird things are with pain moving around and all.  I can't drive, can't work, trying to be positive and upbeat.  Thanks for listening.

Vince

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Replies by: ed williams, AMcReader

Check out the story of this little fellow and his family - dealing with a slow-growing ganglioglioma to the brain - respond to BRAF/MEK targeted therapy:

https://www.compuserve.com/news/story/0002/20181206/KBN1O51JX_1  

Ratties will save the world!  Thanks.  celeste

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amberowe's picture
Replies 1
Last reply 12/6/2018 - 8:19am
Replies by: SABKLYN

Hello, 

 

i have had this growing under my nail for 3 months.  It has not moved and has grown larger.  Some have said it’s melan and some have said its bacterial or trauma and to watch it.  I’ve been watching and it’s still there not moving.  I do not have insurance so I’m trying to be logical with the financial side and not freak out but I need advice.  Can someone please tell me if this looks as though it is melanoma to them? 

 

 

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Melissa1987's picture
Replies 2
Last reply 12/6/2018 - 10:54am

Tomorrow will be my first. I called them about a suspicious mole on my neck. That’s really all I want looked at because I don’t have a lot of cash. Will they still do a full body skin check or will they just look at the mole in question? 

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Mareglia's picture
Replies 3
Last reply 12/8/2018 - 8:56pm
Replies by: Mareglia, AN8, WithinMySkin

My daughter’s biopsy came back today as a Spitz Nevus with mild atypia (apparently because it was slightly assymetrical). Pathologist is confident it is not a melanoma, but is on the fence about a WLE. Derm suggests getting it done at Boston Children’s with a pediatric plastic surgeon. Both the pathologist and derm do not think there would be any benefit to an SLNB. 

What would you do if it was your kid? I’m TERRIFIED of having this show up in her lymph nodes someday. I’ve read about a couple cases where a child died after having the Spitz removed and melanoma showed up in the lymph nodes years later. Derm says those cases must have been misdiagnosed from the start... 

Just don’t know how to get my head around this. 

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Julie in SoCal's picture
Replies 9
Last reply 12/10/2018 - 1:57pm

Ok mel kicking friends, It's not official yet, (only the Rock Star can officially pronounce funk and barnacles melanoma, and I haven't seen him yet), but I'm 100% positive Mel's back in the form of two smallish bb sized blobs by my elbow. 

It's been just 6 months since the last recurrence (same place). so my questions is do I keep playing whack a mole and go with surgery again? Surgery was a good answer when I needed to focus on knees.  But then did I just punt the problem down the road and so now I'm dealing with the inevitable? Knees are good though...

So far all of these critters have been in fairly accessible places (under left elbow and arm). So surgery is fairly easy and straight forward (essentially 2 WLE!s) but surgery doesn't do anything to stop the critters the cells that are already there (presuming there are still some mel cells running around) from traveling out of my arm and growing into something more nefarious. Again this is assuming that there are more mel cells running around but this seems like a reasonable assumption.Playing whack a mole with this doesn't feel like a good option.  But maybe it's the best not good option?

I've been looking at clinical trials but most of them have Ipi or pembro, and the RS Doc and I want to avoid these due to the toll they take on my joints.  Has anyone tried ILP? It doesn't sound fun, but then what is? 

Just talking out loud there friends.  Open to all options!

Thank you and peace to you in this wonderful holiday season!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Ronnieandbeth2018's picture
Replies 10
Last reply 12/7/2018 - 4:01pm

My husband was diagnosis in October of this year with desmoplastic spindle cell melanoma of the face. It was 4 mm deep. waiting for results of MRI of the head and a full body pet scan to come back. lymph node biopsy of the face was inconclusive. we live on the east coast has anyone had this type of melanoma and can you tell me something about it. Our oncologist has not treated it and wants to send us to Duke University for treatment. Thank you for any info

Beth Borum Ketchum

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MarkR's picture
Replies 1
Last reply 12/7/2018 - 8:42pm
Replies by: lkb

After a few rounds of Ipi / Nivo I was taken off treatment due to adverse side effects and moved to watch and wait as I had a partial response on the first follow up scans. And the docs think this is likely to continue.

About a year ago during a neck ultrasound for an enlarged lymph node that turned out OK, they found a thyroid nodule that was suspicious for thyroid cancer.  I had FNA’s and a Thallium test that suggested it was benign but then it gre a bit so the plan was to remove.  Due to the melanoma this was delayed until a few weeks ago when I had half my thyroid removed.  Results today showed a benign nodule but containing both a 3mm and 1mm spit of melanoma.  This was totally unexpected and I now have to wait til the 18th to see the oncology team after my next set of scans next week.

I was pretty confident about these scans before as the mass in my arm feels either stable or a little smaller, but not quite so sure now!!

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Bradley75's picture
Replies 10
Last reply 12/5/2018 - 10:27pm

Good Morning Melanoma Family,

I have my first TVEC injection on December 20th.  Been through consultation, ultrasound, examination, and everything else under the sun.  They are waiting on insurance approval and plan on injecting me when I get my next Pembro dose.  They have answered all my questions about this and that, but they lack something this board does not.  There are people on here that have been through it already and I have learned the information of those on the front lines matters a whole lot.

Anyone out there have real experience with this?  I am also wondering about the possibility of infecting my wife, kids or other family members with the Herpes they inject.  My onc has addressed this stuff, but the more info I can gather the better.

Thank you all for all the help you have given me and everyone else that comes here confused, scared or anxious. 

Brad

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kannevans's picture
Replies 3
Last reply 12/4/2018 - 10:54pm
Replies by: lkb, kannevans, doragsda

Hello everyone! 

I am usually a pretty positive person but yesterday this stupid situation had me at a low point. I was so excited to start treatment with no tumors/mass that can be seen on a pet scan. (first treatment nov 12) I thought I would be on a smooth road from here on out. Silly me I should have known better...so I got in a car accident Sunday night and when I left the hospital to go to walgreens to get my muscle relaxers I decided to read over all the paperwork and there I see it...2.3x1.6 cm low density right lobe liver mass. The doctors at the hospital said nothing about it. So I wanted to know if anyone has experienced this while on treatment and what the next step is going to be...I am worried...

Kris

Kris

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kortneypatricia's picture
Replies 9
Last reply 12/5/2018 - 7:30pm

Hello all,

I feel ridiculous typing this post, but I feel it might help me cope. Back story: I’m 26 years old, a wife and mother of 2 beautiful kiddos (5 & 3). In July of 2017 I found a strange spot on my labia minora. Looked like a small black freckle. After a few weeks of it not going away, I decided to have my GYN take a look. Initially they were going to leave it, but something about it didn’t sit right with me so I requested to have to removed. About a week later the results came back as melanoma in situ. The next day I went in for a WLE, and thankfully the results came back completely clear. I healed up fine and that was it; just follow up with dermatologist. I’ve followed up alternating between my derm and gyn every 6 months. So far everything still looks good. My derm has seen no other suspicious spots and neither has my gyn. I also check myself regularly to make sure there are no new spots, especially in that area. However, recently, especially in the last few weeks, my anxiety and fear have gone through the roof. I’ve had such a fear of recurrence that it’s hard for me to function. All I can think about is “what if it comes back” and my children grow up without a mom. I even went to the dermatologist a couple weeks ago to look at some moles on my back (that I’ve had forever), and she removed them just to give me peace of mind. Everything came back normal and that helped for a few days, but once that wore off then I just worried about other spots that I’ve had forever. I constantly worry that they’ve missed something or that something horrible is going to happen. I find it hard to concentrate and focus. I’m also about to graduate nursing school, so the stress of that doesn’t help. I’m just wondering how you all focus on the good and not the fear? I know that I am so blessed to have caught this early, but all I read online is how often it recurs, and that the stats for young people surviving melanoma are so grim!  Sorry for the long post, and thank you! 

Kortney Fish

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