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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Scooby123's picture
Replies 10
Last reply 1/21/2017 - 4:01pm

Hi all after having my scans in December I have just had a call from my consultant. Brain tumour no intake on scan so clear brain again.

liver, lungs still stable so scans in 4 months. He said if I get good scans in May then could be scanned in 6 months , but am not at all happy with it feels too long apart at my stage. I know I have been stable a while on lungs, liver but you never know what's round the corner. I see people doing well but then all changers. 

I can breath now and hope and pray ippi still keeps me stable. Prayers to all of us dealing with this disease and caregivers for all the support they give and do for us.

we got a cockapoo dog he will be 3 in April and I can honestly say he has been a god Sence to me when on treatment and all the cuddles he has given me he never leaves my sight when home. Do feel he has help me through the bad times.

Thank you for all your support guys.

Scooby

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Coneflowers's picture
Replies 5
Last reply 1/21/2017 - 3:41am
Replies by: Coneflowers, Mat, debwray, Anonymous

Hello,

I have not posted here for awhile, or really to much. I am wondering if anyone has moved on to Ippy/Opdivo combo, after being on just Opdivo with or without stable results? My daughter has been stable with just the Opdivo. She has been on it for over a year now. She has scans soon, so we will know if this has changed.

It seems after talking with 3 other well know hospital's...that they all have a different opinion. Which does not make already difficult decisions any easier.

Thank you

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/21/2017 - 12:17am

Hello,

The last time I am reading a lot about melanoma, because my boyfriend has a family history of melanoma and he and I want to stay on top of things.

So I understand 50% of all melanoma's develop from pre-excisting moles, and the other 50% out of new moles. So are this new moles immediately melanoma or is it always first a atypical mole to some degree what will eventually develop in melanoma?

I saw that there are a lot of people on this forum who are having a lot of knowledge about melanoma, so I hope I can get some answers.

All my prayers to you who are battling this disease, I wish you al the best!

 

 

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jenny22's picture
Replies 5
Last reply 1/20/2017 - 10:04pm

Hi Jamie-

I was just looking at your last post, from XMAS day.....(I didnt know prior to that LMD had been confirmed)

Wondering how you are....have you been back to MDA?

As always, thinking about you and hoping you are  ok. 

Let us know how you are.....

xxoo

jenny

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Scooby xx

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JoshF's picture
Replies 23
Last reply 1/20/2017 - 2:44pm

So brain MRI was stable. That means TIL would be a go. I'm having 2nd thoughts. Is TIL my best option at beating this or getting into trial like Paul is looking at. I guess I'd like to ask Paul if he'd do TIL again. How tough was it? It's tough decision because it's a long time away from my kids.... What are response rates...is the juice worth the squeeze? I'm really torn...somebody give me some guidance.

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 4
Last reply 1/20/2017 - 11:15am
Replies by: Anonymous, Michelle820

This is all new to me so any advice would be great! Today i had a melanoma in situ removed from my left ear with 5mm margins taken. The doctor is sending this to pathology and assures me if the pathology is good, that is the end of the issue. This is great news! However, the doctor who performed the removal was a second opinion i had sought after the first doctor ummed and ahhhed over that mole and told me to leave it and come back in six months. I am terrified that he has missed other possible melanomas because there were atleast two other moles he spent some time looking at, as well as the one just cut out. One is on my lip and an itchy mole on my back. Should i insist the others are biopsied as well? I feel a little wigged out today, i didnt even go in for the initial check up because of my ear but because of a mark on my lip! I dont want the doctor to think i'm nuts but i really want anything even remotely suspicious gone- cost and scarring are not an issue, is this a fair request my doctor is likely to go through with or am i just responding from fear and shock at having found a melanoma insitu unexpectedly on my ear??

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Selle7's picture
Replies 7
Last reply 1/20/2017 - 6:29am
Replies by: stars, Selle7, Anonymous, Mark_DC

Hi everybody,

My Mom was diagnosed 3b in November 2015. Primary was 1.8, ulcerated, SSM on her right shoulder/chest. After one sentinel node came back positive for a 1mm micromet, she elected to have a lymph node dissection. No more cancer was found. 

Two weeks ago a small black lesion appeared about 1cm away from the lower part of her wide excision scar. The lesion was about 2-3mm. We received biopsy results today that it is melanoma. Her dermatologist explained that it had likely travelled through the skin and that she would be referred to cancer clinic for next steps. 

I know there are many knowledgable people on this board, probably more so than my mom's Derm. Could anybody offer any insight into what we are looking at next? The waiting game kills me. 

Thank you in advance. 

 

 

 

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CindyCo's picture
Replies 6
Last reply 1/19/2017 - 10:23pm
Replies by: Anonymous, Polymath, CindyCo, Casitas1

Mom started radiation on Tuesday (5 sessions total, every other day).  So far, she has been mostly nauseous and tired.  They said that she would get some pain relief, but she hasn't felt it yet. Tomorrow is the second session, so hopefully it will come soon. 

We also found out today that they are planning to put her on Keytruda/Pembrolizumab.  She previously did one dose of ipi/nivo before stopping due to high liver numbers, so we hope that the pembro will be easier on her.  Originally there had been talk of putting her on nivolumab monotherapy, so we're not sure why the change.  I vaguely remember them saying that only Stage IV could have Keytruda back when we were first given the ipi/nivo combo treatment, so I'm worried that they consider her Stage IV now (the newest scan showed the same anorectal mass and regional lymph node spread, but also a few tiny lung nodules that can't be biopsied yet).  Maybe they are counting the lung nodules as mets already? 

At any rate, we are anxious to move forward and start infusions.

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Hi all

I realise it wasnt a cancer diagnosis but I am all of a sudden nervous about another pregnancy after discovering my a dysplastic nevus. I am sure it developed during my pregnancy. The literature on melanoma and pregnancy is scary so just wondering if anyone has any thoughts re dysplastic mole.

Ive had a few years of fertility treatment so lots of hormones pumped into me!

Thanks all

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/19/2017 - 5:52pm
Replies by: Anonymous, _Paul_

So short story, hubby stage IV, did 12 opdivo treatments that ended april last year.  Scans have been clear. Today, results of scan show "Activity", the doctor calls in it, in the nodes by the pancreas and activity in the intestines.  So need tests for those.  The doctor who is usually lighthearted was very serious in her speach and body language. 

Thoughts?  I dont know how to feel...

R

Bin

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JoshF's picture
Replies 23
Last reply 1/19/2017 - 12:15pm

So I ended up with full scan on Thursday. Obviously our biggest concern was liver. Unfortunately we never received disk from MDA for comparison. Bottom line from oncologist looking at scan, there's about 50% healthy tissue remaining throughout liver. I saw images and it was disheartening. Just nodules spread throughout liver. On the other hand, some things got a bit smaller and some things bigger based on written report from 12/15 scan. LDH shot up to 2700 and 2 of the 3 LFT's were a bit higher. Not sure what to expect after 1 treatment. Anyway, she decided to move forward with 2nd treatment of Abraxene & Keytruda. I've been with my oncologist for close to 6 years, I know she's concerned. We decided to schedule a brain MRI for Monday. I'm scheduled to begin TIL Jan 31 and supposed to go MDA for screening next week. Now I'm a month out from gamma knife, I need stable brain MRI otherwise a PI override. I'm not wasting more money to travel if MDA won't do that. So I reached out to them to let them know that. The clinical trial "system" is crap. I feel like when I was healthy cancer patient then I'm a hot commodity but get sick and lose that "Olympic patient" status then forget it...not to mention all exclusions for pretreated patients. No wonder only about 5% of patients are selected for trials. Yeah I'm frustrated by all this BS. I feel decent the last couple of days but who knows how I will feel on Jan 31 when TIL would start IF I get in. Need this Abraxene and/or Keytruda to stop progression. Quite honestly, I'm sick of all of this. It's wearing hard on me and my family.

Josh

Let's work for better treatments....for a cure!!!!

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sarah.brannon's picture
Replies 8
Last reply 1/19/2017 - 12:10pm

I'm going to see my oncologist on Monday day, but I just thought I'd throw this out there to see if anyone could answer.

I finished a year of interferon the end of September. Since it's supposed to wipe out your immune system, does this mean I'll need new immunizations, for like smallpox and measles and stuff?

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Pennie Jo's picture
Replies 10
Last reply 1/19/2017 - 11:41am

Anyone experienced fever while taking Mekinist/Tafinlar? My sisters fever spiked to 102.6 and wouldn't come down - called doc said it is a side effect of the chemo and a possible sign she won't be able to tolerate this chemo. Had me give her decadron (steroid) for the fever. So far it is bringing her temp down. Doc told us to not give the evening chemo dose - we see her oncologist on Friday. Just wondered if anyone else has experienced this - just so afraid the fever is from something more!!?? 

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