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
tedtell1's picture
Replies 2
Last reply 7/20/2018 - 5:40pm
Replies by: tedtell1, marta010

I could use some help, if anyone has had experience with significant throat/voice issues from NIVO/OPdivo,

My onco is pretty much stumped, I have been having minor issues (sore throat, spots, hoarse) Then over the last month it has gotten worse, and since I have been on Prednisone for a while (a whole nother issue that I wont go into right now), they expected the steroid to calm it down. The throat/voice issue has actually progressed further in the last couple of weeks to the point that my throat is constantly sore, and my voice is quite weak and comes and goes frequently. They did a C-scan on my throat and everything looks okay, but ENT peeps are going to look at my vocal chords on Friday. 

I am a special education teacher of students who have substantial impairment, some cannot read thus I really need my voice when I go back to school the end of August. My present condition would not work. My voice quickly departs after a short conversation, never mind speaking at any decent volume for sustained time.

Any experiences/potential treatments would be appreciated. 

Blessings to all you warriors, I have to keep reminding myself I am still NED!

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

Login or register to post replies.

Replies by: ed williams, mrsaxde

I concluded three days of driving the 2.5 hours or so each way to Bethesda today with a meeting with my doctors at NIH. Mixed news again.

At first they were nervous about my post-radiation brain scan. My local radiation oncologist let me get that done at NIH because I had this follow up coming up. Dr. Goff was a little concerned about a couple of things, but a call and quick conversation with the radiation oncologist put those concerns to rest. A good thing.

I had been on pins and needles for several weeks because within a week or so of my last scans in May I felt what I believed to be another cancerous lymph node below and to the right of my navel. Although that was noted by the radiologist as a soft tissue lesion and potential metastasis, Dr. Goff and her team compared this scan to my previous scans and she said it had been there for a while and really hadn't increased in size. (On the radiology report it said it was slightly larger. A difference in measuring techinque, maybe?) Dr. Goff explained that I would have lost some muscle during and after the treatment, and that now I could notice this lump whereas before it may have been buried in the muscle and fat. It was a big relief to hear all that.

The main lesions in my chest have increased in size slightly overall. One is unchanged to slightly smaller, the other slightly larger. Not what any of us wanted to see, but it means it's not time to push the panic button yet. So I'm still classified as "stable disease." There is a very slight possibility she said that the tumors could begin to shrink between now and my next follow up, but that I shouldn't expect or count on that, as it is very unlikely.

The spot that has been showing up on the head of my right femur is unchanged, although still considered suspicious for metastasis. And for the second scan in a row there was no mention of a similar spot that had been seen earlier on the left Iliac crest of my pelvis. Last time I was told that it may not have been visible due to the "cut" of the MRI, but as a layman it seems unlikely to me that it wouldn't show up on two scans in a row if it was still there. But again, I'm not the expert.

Dr. Goff said she plans to visit the lab and ask if they are doing anything new and exciting with my cells that could potentially work better for me. I assume that would mean going through this process again. That may be a tough call on my part. I handled it once but now I know how it makes you feel I don't know if I would have it in me to do again.

So that's what's up with me. I hope everyone is getting a chance to enjoy this beautiful summer!

-Bill

Login or register to post replies.

casagrayson's picture
Replies 4
Last reply 7/20/2018 - 2:14pm

I'm at a loss here on what to do.  My husband has had two primaries -- one along the mandible that was classified as T1b, and another in situ on the scalp.  He has gone for full skin checks every six months or more frequently ever since.

He has been having some issues with his eye, which he thought was just a drooping eyelid that could be fixed with minor cosmetic surgery.  Long story short, a visit to the cosmetic dermatologist morphed into an ophthalmologist visit, where it was determined he has optic disc swelling, motility issues, and nerve issues causing the drooping eyelid.  The ophthalmologist ordered an MRI of the eye orbits and the brain.  The radiololgist was informed of the previous melanoma, of course, as well as other medical issues (headaches, major fatigue, dizziness).

Here was the finding by the radiologist:

1. Multifocal FLAIR hyperintensity involving the left parietal lobe, left occipital lobe, and posterolateral right frontal lobe, as well as the right temporal lobe. Much of the signal abnormality appears related to small cortical venous structures. There is an additional focus of FLAIR hyperintensity involving the right temporal lobe cortex or overlying leptomeninges with slightly more nodular associated enhancement, less convincingly contiguous with an adjacent cortical venous structure. This could represent vasculitis, particularly if the patient is receiving immunotherapy therapy for the given history of melanoma. Areas of subacute infarct are thought to be less likely, given the apparent vascular nature. Perineural metastatic disease cannot be excluded, but is less likely.

I reviewed the MRI myself (I have quite a bit of experience having had my own pituitary tumor, and I run a pituitary disease medical support group) and I definitely see the "nodules" that the radiologist references.  There are at least 8 tiny spots that light up.  Here's my dilemma.  The radiologist suggests another scan in 3 months.  The ophthalmologist wants a neuro consult (which is not available until Aug 29).  I'm wondering if we should find a melanoma specialist to read the MRI/report just to rule out possible micro metastases.

Am I overreacting?  Should we just go with the flow and wait until the end of August, and see a neuro who does not specialize in melanoma?

Strength and Courage,

Susan

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 7/20/2018 - 10:05am
Replies by: Anonymous, laurakoco, Skelly, QuietPoet, Coragirl, Susanlee528

I'm 25 and I had a Stage 1 melanoma excised about a month ago. It was barely anything... my doctor called it "more of an inconvenience than a crisis". And yet... I can't stop obsessing over every other mole on my body. I think that issue is that my Dermatologist was completely shocked that it came back as melanoma. It was the tiniest little black dot - it didn't fulfill any of the ABCDE criteria. He says he only biopsied it because it popped up recently. I had another one biopsied at my next visit - and again he said, "I really don't think this is anything, this is just to make you feel okay about it" - and it came back as a dysplastic nevus. So I'm left feeling like there's no way to really know if something is up. 

My dermatologist has said that I should trust my gut and if I want him to biopsy something, he will. But I'm nervous that, given free reign, I'll honestly want to biopsy every mole on my body... and as a red-head, freckle-covered person, that's going to be a lot of little holes. I know the whole, "look for anything new or anything that changes", but when you have inumerable freckles and dozens of moles, it's really, really hard to know what's new. I'm driving myself crazy every week trying to remember if some mole I just noticed is new or not. 

So I guess my questions are... a.) How do you not want to cut every mole off? b.) How many biopsies did you ask for in the first few years after your diagnosis?

Login or register to post replies.

Suebette4467's picture
Replies 11
Last reply 7/20/2018 - 6:18am

My doctor has suggested getting a port in my arm for my treatment. I was wondering anyone's thoughts of experience with or without port?? Thanks

Susan Bette Hall

Login or register to post replies.

GeoTony's picture
Replies 4
Last reply 7/19/2018 - 8:58pm

Hi all, just sharing some good news, my latest scan shows an overall reduction in tumour burden and more significantly a 1" lung tumour has "melted away", just had to share, keep up the fight, it's been 18 months of treatment, lots happened initially, then appeared to plateau, previous scan showed some unusual lung activity, "coalescing mass"and I've been short of breath when exercising for over 3 months, so this is superb news.

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

Login or register to post replies.

VinceMart's picture
Replies 2
Last reply 7/19/2018 - 2:06pm

Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

Login or register to post replies.

Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

Login or register to post replies.

Replies by: SOLE, Bubbles

Sorry if this has been posted previously but if not thought everyone would find this interesting.

https://www.bbc.co.uk/news/world-australia-44868333

Login or register to post replies.

ETF111's picture
Replies 47
Last reply 7/19/2018 - 9:08am

 

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

Login or register to post replies.

TexMelanomex's picture
Replies 11
Last reply 7/19/2018 - 12:24am

Hey Warriors!

Today I completed round 14 of Pembro and got results back on CT and MRI from yesterday. First, all scans were clear so I remain NED! (YES!!!). I'm still tolerating the Pembro well but my thyroid (TSH) has started to climb and fluctutate so I'm starting Synthroid tomorrow. I have noticed more fatigue and I'm hoping it helps get me back to full throttle. Anyone have any experience with this? TSH wasn't crazy high (and T3 and T4 were still in normal range) but I definitely felt more fatigue following these last few treatments.

I hope you are all kicking some melanoma ass and staying well engaged in the fight. 

Shout out to MelanomaMike who completed his third round of Ippy/Nivo today, NED or bust!

Warrior On!!

Tex

Login or register to post replies.

wildpoppy's picture
Replies 4
Last reply 7/18/2018 - 11:05pm
Replies by: Treadlightly, wildpoppy

Anyone have a tiny black dot NOT be melanoma?

I have found a a black mole near my knee... Started 3-4 months ago as tiny weeny fleck, just about able to see, which I ignored. Yesterday I realised it had grown and is very dark. It is just under 1mm diameter now.

(I have had a lot of skin changes in last 2 years, 2 biopsies  done by dermatologist that thankfully came back ok). 

It seems that what I have read on a couple of forums, that many melanomas start like this, some even being diagnosed at stage 2 this small :-( 

Obviously I am booking up to see dermatologist, but I am UK, so there is often a week or two's wait, which worries me, incase this is something nasty...

 

Any help SINCERELY appreciated

Login or register to post replies.

peterjohnk's picture
Replies 6
Last reply 7/18/2018 - 8:44pm
Replies by: peterjohnk, JuTMSY4, brianm

Brand new to the forum.  I have minor chest pain thats months old also with cold-like symtoms.  Does anybody have experience with this before they were diagnosed w/ stage 4?

Login or register to post replies.

Redo.. forst got posted as Annonymous by mistake...

Hello... I posted about gamma knife the other day.. but realized I am not really sure how concerned we should be rearding a brain met appearing.. 2 years post gamma knife and 2 years into Immunotherapy? My mom is not BRAF positive. Her initial brain mets were 3 and small. Now 2 years later as far as we know there is 1. Per my last post going to talk to Dr about not coming off immunotherapy as planned. But I am not sure at this stage of the game what  it means when Brain Met comes back.. what the overall trend is. is it possible they will come back more and the immunotherapy has lost its umph so to speak...?

To be honest the immunotherapy has become such a routine and Mom has been doing great overall with everything else calmed down. so its all felt pretty low key compared to others tough roads...I dont want to be naive though...she started at stage 1 and became stage 4 and we were not expecting that. I also understand that for other types of brain cancers this would be a very not good scenario.. but melaoma seems to be a little different..

Any input on mets recurrence while on immunotherapy or couple of years out appreciated.

Thanks so much!

Login or register to post replies.

Hello... I posted about gamma knife the other day.. but realized I am not really sure how concerned we should be rearding a brain met appearing.. 2 years post gamma knife and 2 years into Immunotherapy? My mom is not BRAF positive. Her initial brain mets were 3 and small. Now 2 years later as far as we know there is 1. Per my last post going to talk to Dr about not coming off immunotherapy as planned. But I am not sure at this stage of the game what  it means when Brain Met comes back.. what the overall trend is. is it possible they will come back more and the immunotherapy has lost its umph so to speak...?

To be honest the immunotherapy has become such a routine and Mom has been doing great overall with everything else calmed down. so its all felt pretty low key compared to others tough roads...I dont want to be naive though...she started at stage 1 and became stage 4 and we were not expecting that. I also understand that for other types of brain cancers this would be a very not good scenario.. but melaoma seems to be a little different..

Any input on mets recurrence while on immunotherapy or couple of years out appreciated. 

Thanks so much!

Login or register to post replies.

Pages