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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Replies by: Bubbles, JoshF, MoiraM

I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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Bradley75's picture
Replies 2
Last reply 6/30/2016 - 8:31pm
Replies by: jennunicorn, Janner

I had my every three month PET/CT this week and the came up with something that I am not sure about.  It reads as: new 5x10 mm FDG avid nodule or lymph node in the perirenal fat inferior to the right kidney.  They go on to say SUV max 3.2.  This is concerning for possible metastasis. 

Their recommendation was to come back and have another scan in 6 to 8 weeks.  They want to see what changes happen and either remove it or call it reactive.  I have had lymph nodes light up the scan in the past year that have been determined to be reactive lymph nodes, so that would be nothing new for me.  There was one under my right arm that had a fine needle, ultrasound biopsy performed on it and it came back benign.  There has never been one near an organ, if that makes a difference  The kidney one can't be handled that way so the only way to know what's going on is to have it surgically removed.

The issue I am having is the waiting 6 to 8 weeks.  My onc gave reasons why we should wait, but it is hard to be at ease about waiting.  The thought of it getting worse while we sit and wait is not good for the soul.  My care team is Mayo in Rochester so I think trusting their opinion is a decent option, but I hate waiting.  Anyone have any input?

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Ablessedfamily6's picture
Replies 2
Last reply 6/30/2016 - 7:21pm

Hello everyone and thank you in advance for any insight you can provide! I was diagnosed with stage 3b melanoma in 2007: 2.9mm ulcerated primary with micro mets in one lymph node. I was blessed with an aggressive surgeon and declared NED two months after diagnosis. I went on to participate in a gp100 trial at NCI NIH. After five years of clean scans, I was released from NIH and began follow up at UVA. I've had many, many biopsies over the years and everything has been caught at "mildly atypical". For some reason this year, I've had two spots make it to "moderate/severe" and also had two Basal Cells pop up. :-/

First question, is there anything else I could be doing besides the biopsies and waiting? The recent issues have me nervous. Currently, I have 3-5 biopsies every 3 months, blood work every 6 months and CT every year.  

Next question, any one know of any long term side effects from gp100? I'd never thought to consider the clinical trial as the cause of other health problems, but my general physician suggested it and now I need more info, but there isn't any. :-/ Since 2007, I have been diagnosed with Chronic Fatigue, Narcolepsy, Glaucoma, hypoesthia (sp?), peripheral neuropathy, migraines, inflammatory disorder of the skin, tinnititus, abnormal heart rhythms, tachycardia, hypoglycemia, dis autonomic and sluggish digestive disorder. The whole time we have been looking at MS as the possible cause, but frequent scans show no lesions. My dr said that the more research coming out on immunotherapy makes her believe that the trial could be the cause of my health problems. FWIW, before 2007 and between flare ups I am a very fit and active person. I bike and hike regularly and run whenever my muscles will allow it. Many of my specialists have billed me as the healthiest sick person they treat. I do respond well to prednisone, but only at 60mg+ per day and I hate to think the effect that is having on my body long term. 

 

Anyways. I would appreciate any opinions or insights. I feel like I'm losing perspective of the situation. I'm trying to stay grateful for the time I've been blessed to have, but starting to feel like a sitting duck that isn't doing anything to protect itself. :-/ Thank you again!

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Landlover's picture
Replies 16
Last reply 6/30/2016 - 12:31pm

Hi-  I am currently weighing my options for my stage 3C melanoma which I recently posted about.  One thing that surprised me was my Onc (Dr. Lao U of Michigan) said that he would get scans "every so often" vaguely and stated he'd do a brain MRI about once a year.  That seems too long to go to me.  What are other people experiencing as the standard for stage 3?

I am getting a little overwhlemed by all of the unknows, guessing, worrying, and not great options.  I want to have faith in my doctors and care, but I am worried.

Thanks

Peggy 

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DutchCasey's picture
Replies 10
Last reply 6/30/2016 - 6:23am

Concerned might be too light a term.
A little about me, I'm 47 years old, male, with very pale skin, blue eyes, and blonde hair.
When i was a child my hair was so light it almost looked white.
Needless to say I had several very severe sunburns by the time I hit my teens. At that time I became aware of the risks of sunburns and have never been outside without a shirt since.

Fast forward to my thirties and I find a lump under the skin of my right thigh. Doctor says it a fatty deposit and leaves it at that.
Keeping in mind that I was raised to not complain about health issues and not be a hypochondriac, I felt a change in a mole on my upper back but thought nothing of.
Ten years later I find a scab a little lower than the first mole. Again impossible to see the area properly I peal the scab off. Guess what? The scab keeps reforming.
That area is now a jagged irregular mole that looks the same as the first one.
Last year I noticed a lump on my side under the skin over my lower ribs. Again thought nothing of it. Just another fatty lump. I did notice that I had pain under that area when I bent over, like a bruised rib. Again thought nothing of it. I had three shoulder surgeries over the last couple of years and had gained quite a bit of weight from being sedentary and just thought it was caused be that weight gain.
Couple of years ago my wife noticed that the original mole on my upper back was flaking. Middle of winter and I had some dry skin so again thought nothing of it.
Since the first lump by my ribs I have since developed three more on my torso and one in the thigh on my left leg.
Last week I was with my GP checking out the scars from the shoulder surgeries as they are developing keloid scars which is odd as all previous scars have always healed perfectly.
I decide, more like remember, to ask about the moles on my back. He takes one look and all he says is "oh my".
He immediately sends a referral to a dermatologist. This being Canada there is a wait involved. Can't see the dermatologist till july 19th.
Strange thing is that the dermatologists office called that day and said I am on top of the waiting list for any spots that open up due to cancellations.

Sorry for being so long winded.
Just how concerned should I be? Normally I don't worry too much about health issues as the odds are always in my favour but as I've been reading many pieces are starting to come together.
I'd be lying if I said I wasn't freaking out.

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Kimba67's picture
Replies 6
Last reply 6/30/2016 - 5:53am

I had my surgery Wed, My BF, Sister, and both sets of parents came to support me.  I didn't know if they would operate becasue I was having hypertension issues that could have stopped the process.  I waited one month to have the proceedure and now I have a 7inch scar, 3 inch scar below that and a very sore arm pit. 

 

I went in for the mapping and boy does that radiation medicine burn..lol  All I could say was "Dayum"...4 injections and the tech thought the needle was the worse part...HA

I woke up and was ready to go home.  The next couple of days were a little fuzzy, but I was verticle and moving as well as could be expected.  I was standing in line at the store Saturday and this man behind me asked me what happened.  I smiled and told him I was sky didving when I was clipped by a glider.  My mom giggled and he looked at me so strange.  They he said "noooo", I smiled and said "no"...I had cancer removed. 

 

It's funny how making someone else smile, made three other people smile.  My amazing physician and his team did a great job, He feels he got it all, but now I am waiting on the pathology report from my lymph.  No matter what we go through, we are never alone.  God is good.

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arborbnb's picture
Replies 6
Last reply 6/30/2016 - 3:36am

Not sure if anyone remembers us .  I just wanted to pass along some good news and hope to those fighting the fight.  Peter was dx Stage 3 in 2001 and had 3 surgeries, a year of Interferon and radiation.  He has been NED since December 2001.  The radiation has left him with muscle contracture/ scarring etc in his upper back and he still takes gaba for neuropathy BUT he has beaten all the odds.  Don't give up!

 

Julie

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Kim K's picture
Replies 6
Last reply 6/30/2016 - 3:13am

Just made 6 years this week.....  Was going to chime in with the other long term NED'ers.  Great article in cure about immunotherapy & targeted therapy, timing etc.  See post below.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Charlie S's picture
Replies 12
Last reply 6/30/2016 - 3:10am

I am done and no more.

No Cheers

Charlie S

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Janner's picture
Replies 7
Last reply 6/30/2016 - 12:23am

I have ignored my melanomaresources.info website for a long time,  I'm attempting a revamp of the website - moving the domain to melanomaresources.com in the next month or two.  I'm sure I have many broken links and lots of links need to be updated reflecting more current info.

I am looking for links that have been particularly helpful to you - that may be helpful to others.  My website currently has the categories listed below.  I am willing to add/delete based on input.  And if anyone wants to spend a little time helping me check links and decide which are out to date, I'd appreciate any input!  smiley  I either need to update the site or trash it, and I've decided to give it one more attempt to bring it up to date.  This is only a sideline for me nowadays (and I still have a real job) so INPUT IS WELCOME.

Categories I'm currently using:

Organizations
Newly Diagnosed
Staging
Guidelines
Educational Material
Photos
Treatment Options by stage
Articles
Patient Perspectives
Lymphatic System
Pathology
Anatomy
Medical Terminology
Wound Care
Cancer Care
Survivorship
Psychology of Cancer
Cancer Myths
Recurrent Melanoma
Multiple Primaries
Unknown Primaries
Atypical Nevi
Mole Mapping
Radiology
Suncreen
Clothing
Melanoma Items
Pregnancy
Insurance
SSDI
SSI
Sideline Issues

 

http://www.MelanomaResources.info

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Happy_girl's picture
Replies 7
Last reply 6/29/2016 - 11:12pm
Replies by: Prd10, Happy_girl, Anonymous, Polymath

I just got my scan report from my ct scan. It states... Liver is normal in size and ct density. There is a sub cm hypoattenuating lesion in segment 6 , not definitively seen on prior outside hospital pet/ct scan. My question is... Could it have been on the other scan and missed? What is all of this really saying? I'm really praying it is a cyst or maybe a false positive. Thanks for all your help.

is this pretty much just saying the same thing that my last post- spot on liver- is saying? Sorry to keep asking questions- I'm just trying to understand!

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Ajwells's picture
Replies 5
Last reply 6/29/2016 - 9:54pm
Replies by: Landlover, kathycmc, Gene_S, desertsun, Anonymous

I know that some temporary nerve damage was going to happen, and the risk for permanent was there. I'm just a little surprised about some of the things that were affected. 

My neck dissection was Monday.  Boy was that a lot worse than I had originally expected. Large incision down my neck, about 10 inches from my ear to my collar bone.  

They took out 27 lymph nodes. And I should probably note that my labs came back CLEAR!!  Not a single little node had any cancer in them!  So no more surgery and I'll be ready for immunotherapy once I'm all healed up!  

But back to the point.  I woke up from the surgery with very little control over the left side of my face. Doctors weren't worried about the facial paralysis being permanent. Every time they came in they made me make a kissy face and every time they did they were happy with whatever happened. My smile looks like popeye right now. Just the left half of my bottom lip won't move at all. It's really strange.  They did note that the numbness in my left ear is very possibly permanent. They had to peel s lymph node off of that nerve. Of course my neck is stiff. I can't really move it side to side and I can't turn my head to the left at all. It isn't particularly painful, my neck just won't let me turn it.

and now for the weird part.  The range of motion in my left shoulder is terrible. I can't lift it past like 80 degrees up. I can't reach for things. I can't lift it to tie my hair up. I try and stretch and loosen it up, which helps out some, especially right away in the morning.  

My doctor never mentioned the possibility of having to do physical therapy for anything like this, but this seems like the type of thing that would require some. My mom just went through some shoulder surgery and she was having the same range of motion issues I'm having now and she goes twice a week for PT.  

has anyone else dealt with weird spread out nerve damage from surgery? especially in the neck.  

Also one more time: MY LABS WERE CLEAR!!!!!!!  

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Rita and Charles's picture
Replies 7
Last reply 6/29/2016 - 9:38pm

Has anyone experienced patches of their skin turning into white blotches??  Charles' arms and part of chest have now gotton white splotches instead of his normal skin tone.  I assume it is lack of melanon??  Any feedback or experience shared is great, thank you.

Rita

Rita

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MelissaCK's picture
Replies 5
Last reply 6/29/2016 - 8:19pm

Hi everyone,

A couple weeks ago I went to the dermatologist for a routine body scan, simply because I hadn't been in awhile. She removed two moles from my back and a few days later called and said they were atypical, and one was pre-melanoma (I think those were her words, my head was sort of spinning at that point). She had me come back in for a larger excision so today I went in and she removed the area of skin surrounding the mole. I wish I could recall the size of both the mole and the incision but at this time I can not (I am planning on requesting the pathology report tomorrow).

I asked if this made it more likely that I would get melanoma and she said that No, it's all gone--that it was just in the mole and surrounding tissue and since it's removed, there is no longer a problem. Is this true, that I am good to go now? Are there instances where they run a report on the surrounding skin and find that there is more cancer and that it's spread? What's been your experience?

I go back in two weeks to get the stitches removed so I am hoping to have more answers then. I was feeling okay about this but the more I read the more I realize this could be bigger than I thought. The doctor was really encouraging and didn't seemed worried about anything, but I'm still worried about potential outcomes. My husband is deployed and closest family is about 4 hours away, so I'm just looking for support from people who have been there before.

Thanks to everyone.

Melissa

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