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
MovingOn's picture
Replies 1
Last reply 10/24/2017 - 1:38am
Replies by: Anonymous

Hi everyone, On Wednesday I see my melanoma specialist/Oncologist so I’m definitely going to ask her about this. On my neck dissection scar (healed back in Feb-March) I now have a red bump which is very superficial (seems like it is in the skin rather than under it). My wife and I think it is just a mosquito bite. The main thing which disturbs me is that it is exactly on the surgical scar (not off to the left or right by even a millimeter). So the mosquito must have found that center point of the scar to be the best place to bite me (I don’t have feeling in the scar so I wouldn’t have felt a mosquito Land or bite).

My question is: Do in-transit Mets resemble mosquito bites (red, raised)?

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (nodes in back of ear and parotid)

Login or register to post replies.

jagstter's picture
Replies 1
Last reply 10/23/2017 - 9:24pm
Replies by: TexMelanomex

I took the advice of my GP & decided to get a 2nd opinion from a local oncologist re: the numerous bilateral pulmonary nodules that showed up on my most recent CT scans @ MDA in July. I met w/ him last Friday & he was wonderful! Though not a melanoma oncologist (hematology) he completely agreed a 12 week interval scan was absolutely warranted. MDA has me scheduled for mid-December & it just seemed too long, especially since I've been feeling poorly now for a few months.

So as a result, I'll have a PET/CT, tomorrow. Yes, I am a little anxious, especially since all my pre-July lung scans had been clear ... but being proactive definitely helps me feel like I'm not just a number in the system, waiting for the wheel to turn. Also, I know the resolution won't be quite as good as Full Body CT w/ Contrast but if there are metastases, hopefully we'll see metabolic uptake & I'll be in a better position to insist upon treatment @ MDA, asap!

Separately, I do have a 4 centimeter tumor in my kidney, which has been growing intervallically since the spring. Urologist was supposed to assess for biopsy / surgery, next month. If my lungs are clear, I'll have to set sights on the next target. If not, maybe immunotherapy, for both? Fun, fun, fun!

Login or register to post replies.

Clee's picture
Replies 2
Last reply 10/23/2017 - 6:46pm
Replies by: Clee, Jamie1960

Hello,

 

i just received my diagnosis/pathology report on Friday. Of course I am anxious and trying not to stress too much, but knowledge is power. Waiting on the call from Dermatology for next step. My report states malignant melanoma Clark’s 2 Breslow’s thickness 0.56 mm with focal regression non ulcerated involving a side margin, deep margin is free of involvement.  It also says mitotic index 1-2/mm2 and regression,focal,less than 75% of lesion. Any input would be greatly appreciated that will help me understand what mitotic index and regression means in terms of my diagnosis and if it could affect treatment......

Login or register to post replies.

JeffinSeattle's picture
Replies 1
Last reply 10/23/2017 - 2:45pm
Replies by: guynamedbilly

Here we go! My wife is having her first brain scan and chest MRI tomorrow since her CLND in May. Actually, she had a lung MRI in July before starting treatment and nothing showed up. We're hoping the headaches that come and go are from side effects from pembro and stress.This Wednesday will be her 5th infusion of Pembro. We're fortunate to have a great Oncology Team (SCCA here in Seattle). Her doctor was able to get pembro covered as an adjuvant therapy for what as far as we know now is stage 3. She had I think 18 lymph nodes taken out from her left groin area on May 4th. One we knew had melanoma in it and one other node had a few melanoma cells, everything else was clear.

I guess it's time to see if Pembro is working and keeping any cancer cells from making an appearance!

 

Jeff

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 10/23/2017 - 11:28am
Replies by: Anonymous

Do all melanomas change over time or can they just appear and then not change for many months or years meaning you could not detect any visual change or change in feel? If a mole is suspicious but remains the same can it still be melanoma.

Thank you for your answers.

Login or register to post replies.

Harmony's picture
Replies 1
Last reply 10/24/2017 - 12:04am
Replies by: MovingOn

Hi all

Thanks for letting me join

Have just been told i have a
Severely atypical dysplastic nauevus
Mole on my back
They are going to remove in 2 weeks as highly likely its melonoma

Its not that big and i just after advise _ should i be overly worried at this point
It was picked up on check up
I have lots of other serious illnesses and would rather know what to expect

Clinic just say dont get overly worried at this point as will remove and do biopsy but easier said than done

Thanks

Login or register to post replies.

GrossieGal313's picture
Replies 2
Last reply 10/23/2017 - 12:05am
Replies by: Bubbles

I met with my oncologist for the first time.

We will be persuing Immunotherapy as the course of treatment.

Most likely Nivo but we talked about BRAF as an option as well.  Will I go this route only if the mutation is present?  Nivo if not?

I'll obviously revisit my questions with oncologist just wondering if anyone has any inut or can recommend a good resource to understand more about Immunothereapy and BRAF.

Donita 

Donita

Login or register to post replies.

Whitey's picture
Replies 3
Last reply 10/23/2017 - 9:42am
Replies by: kst, Bubbles, Whitey

My husbands lung cancer was first diagnosed in Feb. 2017.  After many tests, dr's ect. the lower part of my left lung was removed.  Diagnosis was Metastic Melanoma Unknown Primary.  Onc. was going to treat with Immunotherapy but then called to say Medicare would not pay for the treatments because since they can't find the primary source and they removed the melanoma part of the lung my husband was considered "cancer free".

It would seem to me that if there had to be a primary then it is there somewhere hiding and treatment would possibly get rid of it.

I don't like the idea of wait and see if it comes back somewhere else.  It didn't go anywhere, just the metastisized melanoma was removed.

I am so worried for him.

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 10/23/2017 - 9:35pm
Replies by: TexMelanomex, MovingOn

I have read that stage iv patients with evated LDH levels have the worst prognosis. My husbands LDH level has been normal for the first 5 years at stage iv. His level has recently shot up due to disease progression. Do high levels for any length of time still indicate poor prognosis?

Thank you. 

Login or register to post replies.

Bubbles's picture
Replies 1
Last reply 10/23/2017 - 9:14am
Replies by: guynamedbilly

There's a "new" article addressing the possible connection between cancer and sugar out in Nature Communications.  So, I thought I'd get a jump on it if any of you are interested.  I've created a post (with some significant help!!!!) that includes information, opinion, a link to the article itself and links to two other articles discussing same!!! 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/cancer-and-sugar-oh-lordy-lordy-here-we.html

Hope it helps and I hope all of you are having a lovely weekend!!  love, c

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 10/22/2017 - 2:34pm
Replies by: Anonymous

I've had a mole for atleast 2 years and i noticed 2 weeks back it has a eccentric darkbrown dot on one edge about 2mm in size. The darker color is nothing new but according to several studies peripheral eccentric hyperpigmentatiin is a significant predictor of melanoma. The mole itself is lightbrown 5mm in diameter, round with regular edges and it has probably not changed much from what it looked like 2 years ago since the darker spot was darkbrown back then and it isn't gone black or anything. It is smooth on the surface and the darkbrown spot is not elevated. Many other nevi that i have are also two colored. It hasn't changed since i noticed it. If it has changed since i've last seen it it has probably gotten bigger but not lost any previous symmetry in this process. In short: A lightbrown flat nevus with no other clinicaly atypical features than a brown dot 2 mm in size located on my right upper arm wich has done little or no changing in 2 years on a 17 year old male.Also do melanoma eventualy stop evolving and hiw does it look like when it has finnished evolving clinicaly? Ihave a derm appointment in 3 weeks and im super anxious has anyone experienced anything simuilar or can anyone tell me if this is serious and if i should indeed be concerned?

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 10/23/2017 - 4:14pm
Replies by: Jamie1960

Hi. I had a lentigo maligna( melanoma in Situ) removed by a WLE 3 years ago on the center of my chest, I was 34 years old. I have had freckles on my chest most of my life. After the WLE 3 years ago I still had a few freckles close to the scar an one on the scar where the skin was pulled together. I have now noticed a few tiny black dots in the freckle that has been on the scar. The black dots weren’t there 6 months ago nor a month ago as I always look. My question is since these small freckles( light brown in color have been there since the excision and one is now turning into a melanoma I feel certain ( go to derm tomorrow for my 6 month check) would this be a local recurrence or a primary that just happens to be on the scar. It is a pretty small freckle. Thanks,Tset

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 10/22/2017 - 10:02pm
Replies by: GrossieGal313, Anonymous, jennunicorn

Hello,

I'm scheduled to get an WLE and SLNB on Wed October 25th and I am a little nervous (my first surgery using general anesthesia). Any questions I should ask the Doctor and/or anesthesiologist prior to surgery?  Also how long does this type of surgery take?

Thanks for any comments.

Login or register to post replies.

AliCat61's picture
Replies 3
Last reply 10/22/2017 - 4:25pm

Hi all :). I apologize for having gone radio silent these last few months. I have been busy just celebrating having my husband back. After discontinuing the Yervoy and Opdivo combo and being treated with prednisone and lasix for a month, he was feeling fantastic! Even after we started the Opdivo again, he continued to do well. He was swimming with me and walking with me, and exercising. One of the most important things I've learned since his diagnosis in 2015 is that it's important to enjoy every single moment of every good day that we are blessed with, so we did just that. 

He's still doing well. His most recent pet scan in September indicated no new mets and no active tumors., so he's having an excellent response to the Opdivo. Unfortunately, I am noticing a change in his breathing that I will have to report to the doctor when we see him on Monday. Previously he had a very bad reaction to the Yervoy and had an enlarged heart and fluid on both lungs. I am afraid it may be happening again. I'll keep you all posted. 

Thanks, as always, just for being here and listening. 

Alison

 

Alison - wife of Roy, Stage IV Metastatic Melanoma

Login or register to post replies.

seathingchild's picture
Replies 2
Last reply 10/21/2017 - 9:46pm
Replies by: seathingchild, Janner

I have had a recurrence of melanoma on the back of my leg just above the heel. Its insitu, which is good, but will need to be excised, which sucks. Because my surgeon will be taking a wider margin i will have to have a skin graft. He said I'll be off work for a month and not allowed out of bed except for the bathroom two weeks. Silly question, but how do you keep your leg elevated but not put pressure on the skin graft when your skin graft is just above your heel? Having trouble picturing it.

Login or register to post replies.

Pages