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.

Expand/ Collapse Topic
 
Replies By
View Topic
maryb-z's picture
Replies 11
Last reply 5/30/2017 - 1:25pm

Hi Everyone,
Jamie's wife contacted me and said ever since the melanoma went to his spinal fluid it's been hard for him to post here.I'm heart broken to inform you all that hospice has been called in to assist Jamie. Please keep him, his 3 adorable young kids, and his wife Shawn in your thoughts and prayers. It was his birthday yesterday.

No One Fights Alone

Login or register to post replies.

Jeff_in_FL's picture
Replies 5
Last reply 5/27/2017 - 1:40pm

Hi all,

Here's a question that I'm curious about:

When someone mentions "tumors" in their postings, are they usually out likely referring to moles, or would it be more likely lumps? I constantly see posts where people mention something like "...I found two more tumors ...". Just trying to correctly understand the terminology.

Thanks,

Jeff

Login or register to post replies.

Bobman's picture
Replies 2
Last reply 6/9/2017 - 5:30am
Replies by: tanusharma, AliCat61

Greetings  warriors . ...Had a pet scan last  Thursday , and here is how it reads:

"There is a mildly  hypermetabolic complex nodule  in the superior  right  upper  lobe that has SUV max of 1.2 new since the previous  study of 4/28/16. This lesion  may have an underestimated  SUV-max due to its  small  size. This could  be either inflammatory  /infectious  or metastatic . Previously  in the same region  there  was  a  cavitary lesion  that was not metabolic . "

There is persistence  of the anorectal activity  with SUV max of 6.2, previously  8.1 that requires  endoscopic  evaluation , if not already  done.

So , as many of you know I'm  in a holding pattern  trying  to get to the specialists  at UCSF. Been denied  twice by insurance , and currently  in appeal ,which the folks  at the University  helped to organize . They want to see me ,but we're  just waiting  the decision  on the appeal  before  moving  forward . Should  know within  a couple  weeks  on that. In the meantime , I'm  going  to rest up another  week , then start the cutting  again . I have about 20 more lesions  that need to come off pretty  quick . It's  just me and my surgeon  until  I   get to California . 

As a side note about my oncologist  and the current  results , at first he was all gung-ho  about my heading  to the university , but when  I  pushed  him hard to put it in writing  to help me, as my surgeon  did...he back pedaled and said  he didn't  think  they  could offer anything  more than I get here.

I know better  after all my experience  now,that's  it's true  what you all have stated so many times......get to a melanoma  specialist ! !

I'm trying like hell, and it's  going  to  happen . Eleven  primaries , and holding.

Bob

We are one.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 5/29/2017 - 5:02pm
Replies by: AshleyS, Anonymous, Ridingaroundwith27Jennifers

My step-daughter, who is eight months pregnant, has just had a preliminary diagnosis of Stage 1B melanoma on the sole of her foot. Apparently she will have a wide excision and a sentinal lymph node biopsy within the next couple of weeks. She meets with specialists next week to make a plan, but meanwhile, we are all very worried for her and the baby. It would be great if someone who's been in a similar situation could share their experience.

Login or register to post replies.

Maureen038's picture
Replies 11
Last reply 5/27/2017 - 11:58am
Replies by: Maureen038, Ed Williams, UBContributor, Bubbles, Anonymous

Hi all,

    I visited this site a lot but don't write on it a lot. I care so much for everyone here and truly hate this disease!!! My husband had scans on Thursday and has a new 1.5 cm nodule in his liver. Everything else is stable but having a different organ involved is terrifying. He had a MRI this morning so we're in the awful state of waiting and wondering what's the best option. Please give me advice on what's best for Bill.

love to all,

maureen

Login or register to post replies.

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

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 5/26/2017 - 2:48pm
Replies by: jennunicorn

A 25 year old mother to a two year old, I never questioned my skin care when it came to the sun. 

I grew up in a remote town (an island) in Maryland and spent my summers on workboats with my father and had my share of sunburn and tanned skin. As I grew older, my skin tone continued to tan easily with minor sunburn here and there. I use sunscreen on my daughter religiously, but I opted for tanning oils for myself mostly. I also was an avid tanning bed user (3-4 days a week) for about 5 years. My mother is italian, so my complexion is on the medium side, but there are periods of time when I don't tan (indoor or out) that I am borderline pale. 

I have freckles here and there on my shoulders and chest, and I have two raised cherry freckles that have never been concerning to doctors. 

About 6 weeks ago, a new mole on the outside of my armpit close to my shoulder appeared. Small, and very black. I ignored it until about two weeks later. I noticed it was a tad bit bigger. I again let it go. 

Two weeks ago I found myself itching it, not often but when I did, it made a tingle sensation. The same week, I started having pain in my underarm like swollen, tender lymph nodes. I asked my husband, and he said I should get it looked at. I called the dermatologist, and they stated they had openings about 3 weeks later. When they asked what I wanted to be seen for and I explained, I was put on hold and was informed to come in first thing the next day. That scared me. I just went, and the dermatologist asked no questions about my history, just said new moles should be checked. He said he wasnt concerned, but wanted to shave it and send it to the pathology lab. He said most people with olive skin tones/dark hair and eyes do not get skin cancer, and since it was a new mole entirely, it was nothing to worry about.

Is this right? Everything seems to read new moles over 25 years old should be checked out. Does my complexion make me less of a target? Should there have been more conversation about my history with sun exposure? 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 5/26/2017 - 12:56pm
Replies by: Anonymous

Hello everyone.

I have a question see if anyone has come across this. I was diagnosed in 2015 with 3 primary melenoma. Melenoma in situ and also stage 1a and 1b. I only had surgery as they said mine were under 1cm. Since then I have several basal cell removed but no melenoma. I went to the Er last week and had a high d dimer test so they had to give me a c.t scan of the chest everything came back fine, but now I am wondering if the d dimera has anything to do with all the skin cancer I have had. My doctor,said anything can raise it level. Any suggestion would be great. Should I get it retested? The reason i had the ct scan was right arm pain and chest discomfort which they didn't know why but because of elevated d dimera they had to do d dimer. Thanks everyone

LAURA CHARTIER

Login or register to post replies.

Shannon B's picture
Replies 6
Last reply 5/29/2017 - 12:23pm
Replies by: Shannon B, Franny, messedmelanocytes, Anonymous, Toby0987

Has anyone else experienced flu like symptoms prior to being diagnosed? My husband has been NED 10 1/2 years, MUP, 1 positive node, lymph node dissection only. Had a lump come up on the back of head that we were watching. Started running a fever 3 weeks ago and thought he had a bug. Noticed 2 more lumps pop up and made an appointment with family doc and melanoma doc. Tested for Lymes and Mono but negative. Treated with doxycycline just in case. Another lump popped up before we made it to oncologist. Biopsied 1 lump, lymph node positive for Mel. Still having awful flu like symptoms, fever, severe fatigue. Scans coming up on Wednesday and meet with docs again Thursday. Anyone else experienced this? I'm assuming it's caused by tumor formation? Thanks for any help!

Shannon B

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Question for those folks that have been on or are currently on Targeted Therapies. Have any of you developed AFib while on these drugs?  

Login or register to post replies.

D1983j's picture
Replies 6
Last reply 5/27/2017 - 5:29pm
Replies by: D1983j, raun cesar, Anonymous

I have had stage 1 a Mel a year ago. I worry a lot about bumps and moles but the anxiety gets a little better. I have a bump very small on my scalp and it's not red or growing. My husband checks my scalp often and says he doesn't even see it unless I make it red. I have been able to sort of scratch it off but I have really dry scalp anyways. It will bleed if I really scratch hard. I know I shouldn't but I thought it was a pimple or ingrown hair type thing. Now in saying all this my husband has told me that I was worried about it before my last apt in Feburary and my derm who checks me well didn't notice anything. Apparently I wasn't worried enough to ask at the time. My main worry is nodular melenoma and I'm pretty sure that wouldnt scratch off easy and it would be growing bigger fast which this hasn't. I've really had bumps or pimples on my scalp before and didn't think about it because I knew she was checking me and they didn't have characteristics but now I'm going into worry mode. Any help would be appreciated. I've read about sebacious cysts as well which I lean towards considering the time it's been there and how oily my scalp is there. Thanks for listening! This site has helped me a lot over this journey and I pray for anyone affected.

Login or register to post replies.

Shannon B's picture
Replies 6
Last reply 5/27/2017 - 3:51pm

Hello all,

I haven't been here in years. My hubby was NED stage III November 2006 after a lymph node dissection. I stayed around here for a few years but found that I was staying worried all the time. We found out today that Willie's cancer has returned. We go next week for scans. He has an unknown primary. What's new as far as treatment these days.

Thanks for reading!

Shannon B

Login or register to post replies.

Christine.P's picture
Replies 7
Last reply 5/25/2017 - 8:37pm

I realized after I posted my last message that I should have used a more specific subject line so that those with Taf/Mek knowledge and experience would see it better. Here is my original post. I am wondering about the timing of the targeted therapy - is it better now when I have a low tumor burden or is it OK to wait until there is more progression? Thank you for your feedback.

Original post:

I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year.

At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is
"slow" and Tak/Mek only stops progression for 10-11 months (in most people).

I have 2 pressing questions/thoughts.

1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow?

2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part.

I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)

So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better.

It's so hard to know what to do. I hate this disease. 

Christine P. 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 6/3/2017 - 11:11am
Replies by: judyk, jyc, mary1233, Anonymous

I have nasosinus mucosal melanoma.  I had surgery and radiation and have continued to have endoscopic surgery each time the pet and MRI show some growth so far it has stayed in my sinus area.  I am reluctant to have immunotherapy since it is in such a small spot. I may be running out of option. Immunotherapy seems to be for patients with advanced in other areas. It seems to help then but the research doesn't show anyone with 5 year survival with no evidence of disease. Has anyone have a good result with ipi or yervoy.  I don't have any of the genome no kit or for skin the braf that makes immunotherapy work better. Anyone even have muscosal melanoma. I am so discouraged

Login or register to post replies.

Pages