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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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2018 - 6:43pm
Replies by: tedtell1
MelanomaMike's picture
Replies 2
Last reply 5/5/2018 - 2:57pm
Replies by: obtu.bt, ed williams

Is it me or does "Anonymous"  here at MRF have "multiple personalities?"

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MelanomaMike's picture
Replies 14
Last reply 5/6/2018 - 7:59pm

Hi MRF Family, im finally here, sorry i was MIA "again" and i know i said i would write more but, im just not having a good time like someone said i wouldangry....Current Status Report: started Pembrolizumab Nov 2017, had 7 infusions of it with 2 scans  showing desease progression, 1st scan was a bit better as i wrote about back when it happened but, last weeks CT w/contrast showed absolutley nothing to hip hip huray about, all tumors did get larger, no new ones, none shrunk, zilch, just got bigger, i didnt even ask the sizes, BIGGER is freakin still BIG in my book, all tumors are to big...

 Plan B is {what my Oncologist & i have called it} is,  the ol' Opdivo/Yervoy combo. This will began next week May 11th {Friday thank God} so, i know it comes with more side effects then Pembro {wich I had very little of except a 45.3  TSH Thyroid level {i know right?}...Screw it, bring it! Plan B has got to work cuz Plan C SUCKS! A week stay "In-House" treatment of IL-2  or whatever else they would plan on givin me...no no no...Ipi & Dipi  is Gunna Work!...theres my latest, now its time to browse and reach out to some new folks here since ive been on last...Take care ya'all, ill keep you posted...Warrior On Bro's & Sisters, Mike..

 PS: Anyone who has or is currently taking the Opdivo/Yervoy combo please reply, id like to get a heads up on effects...Thanx..

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My mole is located in my upper right buttock. Had it checked by a dermatologist and she said it was nothing. Im not sure what the dark pigment around my mole is.

There is no pain in the mole or the area around it but sometimes it itches around that area although im not sure if its because of my sciatica (nerve pain in my lower right buttock and leg that can also cause itching) or just me being paranoid.

I also have some stretchmarks from losing weight, also is it ok to have a dry mole that has some cracks?

 

http://i761.photobucket.com/albums/xx255/robrt_54/IMG_1260.jpg

http://i761.photobucket.com/albums/xx255/robrt_54/IMG_1241.jpg

 

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Preludejo's picture
Replies 3
Last reply 5/8/2018 - 1:37pm

Hello, so Im in a bit of a panic. Yesterday while just random feeling the back of my Knee I felt a little bump and at first thought it was a Blood Blister. Wife said def looks like some kind of mole. I have never noticed this before so quickly made an appointment with Dermatologist.

 

she did a scrape Biopsy but didnt say it looked good/bad etc so Ive been kind of worried. Im 37, no history of skin cancer in family.  The size was about 1/2 the size of Pencil eraser and seemed more raised yesterday than it did this morning. Anyway. Its off me now but here is a pic I took this morning before it was scraped off.

 

 

 

 

 

 

 

 

 

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Preludejo's picture
Replies 3
Last reply 5/8/2018 - 1:42pm
Replies by: almostalice, Preludejo

Hello, so Im in a bit of a panic. Yesterday while just random feeling the back of my Knee I felt a little bump and at first thought it was a Blood Blister. Wife said def looks like some kind of mole. I have never noticed this before so quickly made an appointment with Dermatologist.

 

she did a scrape Biopsy but didnt say it looked good/bad etc so Ive been kind of worried. Im 37, no history of skin cancer in family.  The size was about 1/2 the size of Pencil eraser and seemed more raised yesterday than it did this morning. Anyway. Its off me now but here is a pic I took this morning before it was scraped off.

[img]https://flic.kr/p/H9qw5T[/img]

 

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Coragirl's picture
Replies 8
Last reply 5/4/2018 - 11:56am

My husband is going to start treatment next week and his doctor is going to use opdivo.is there a difference between Opdivo and Keytruda? He is stage 4 with a small lung lesion. Any information on the drugs or side effects would be so helpful. Thank you

Amie Taylor

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/13/2018 - 5:56pm
Replies by: bjeans, Sharon93065, kst, mary1233, Anonymous

  I would like to know if medicare pays for any type of immunotherapy drugs (opdivo/yervoy).  My  husband has plans to retire later this year but he will be without his health insurance. Now he is thinking this plan may not work.  He has to pay  $1,000.00  as a co-pay even with his insurance so I cannot imagine how much he would need to pay if he had no coverage. 

Thanks for any advice!

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Replies by: Anonymous

Despite starting my melanoma journey in 2003 as a Stage III melanoma peep, previously, I didn't post too much here or on my blog about Stage III melanoma.  Sadly, until recently, there wasn't much to say!!  Thank goodness, times have changed!  So in that spirit, though the information in these articles is not really "news", they may interest some of you.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/05/stage-iii-melanoma-3-interesting-reports.html

Wishing a lovely Melanoma Awareness May to you all! - celeste

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Nick C's picture
Replies 2
Last reply 5/4/2018 - 1:42pm
Replies by: Nick C, Threefitty

Since my last clinical trial didn't work, its time to look at my options:

Ipilimumab + EZH2 Inhibitor on a clinical trial

Ipilimumab alone (standard care)

Single Agent ERK Inhibitor on clinical trial

I have avoided Ipi since it was first offered to me three years ago. Went on Keytruda as a standard treatment January 2017. Had early success, but then new areas showed up. Went on a Keytruda + trial drug in December, but still showed progression after four months.

That brings me back to Ipi. In consultation with my Onc, he felt the if I'm going to be on Ipi why not add a little something. The trial is four Ipi treatments every three weeks and taking three trial pills daily. My hesitation for Ipi are side effects. I have had no side effects with Keytruda.  There won't be an opening in the trial until later this month and I have to wait 28 days before starting a new trial. So last Saturday I retired. That also gives me time to go on vacation (Is it still a vacation when you are retired?) To bad I can't wait until January...if I'm going to feel crappy, might as well be during the winter.

In the meantime, I can go back on my supplements and keep my immune system at full strength. I think there is also a "Honey Do" list wating for me.

Nick

 


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Anonymous's picture
Replies 5
Last reply 5/3/2018 - 4:09pm

Quick recap...

I was diagnosed with Stage IIIC melanoma almost a year ago to the day and just before my 41st birthday.

After the surgeries, I started a IPI/Nivo combo trial but only made it through 4-infusions (1 combo + 3 nivo only) before being removed from the trail due to cardiac inflammation.

The cardiac inflammation subsided after a few weeks of steroids, but the doctors decided to let me recover a few more months before restarting treatments. I was off the immunotherapy entirely from early Oct 2017 to late Feb 2018.

My blood tests showed no other negative symptoms the month after stopping treatments. However, at some point during this down period, my TSH levels spiked to just over 44 uIU/mL (about 10x normal). This wasn't discovered until right after I restarted treatments (with Keytruda only this time every 3-weeks).

I was placed on 50mcg of levothyroxine for a month, which has since increased to 75mcg for just over a month. My levels are dropping but still above the target range (currently about ~7 uIU/mL).

The medicine is fine and the other side effects are minimal this time around, but I've had a terrible time concentrating lately and my short-term memory is equally poor.

I should mention that I've been on Keytruda now for about 12-weeks (4-total infusions). 

Questions...

- Are the memory loss and concentration issues likely caused by the hypothyroidism? Keytruda? Or both?
- Has anyone else experienced these symptoms and found a method to counteract the symptoms?
- Are these known side effects of Keytruda?

Thanks all,
Aaron

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Replies by: MikeG, Bradley75

October 2016 I was diagnosed with Stage 1A .68mm superficial spreading melanoma. Did not have a lymph node biopsied at the time as my derm said wasn't needed with the depth and 0 mitosis and no lympatic invasion present and no ulceration. It was removed near my belt line on my left side near where the groin and torso meet. A month later I still had some pain after the WLE and decided to go have an ultrasound. It came back with a 1.8cm lymph node showing up and that scared me so I went to see Dr Luke. He gave me a pet scan and ct scan and the lymph node didn't show up on the scan and nothing else was seen of any concern. He said it was most likely due to the wle and thats why it puffed up and went away. I also did the decision dx test and it came back that I was in the top half of the best category of it not returning. 

After about a year I went back and did a lung xray and another ultrasound. The 1.8cm node went down to 1.5 and the xray came back clear. Last night I felt a small pea like bump under the skin but it is on the opposite side where the leg meets my torso. I remember Dr Luke telling me to check the side that had the melanoma because thats where it would drain to not the opposite side. I did have a bad ingrown hair last week that got infected and puffed up but that was also on the same side as my melanoma. Going in to have it checked out. Would it likely be melanoma or possibly something else? Really scary that its down by my groin area but hopeful since its on the other side.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/3/2018 - 9:44am
Replies by: SABKLYN

Hey everyone,

I'm sorry to bother you all with my hopefully baseless concerns, but it's been a bit of a stressful few months and this has only added onto the pile. A few months ago, a strange discoloration appeared on my chest in an area that is rarely ever exposed to sunlight. It was red, possibly a little dry, and about 1.5cm in diameter. In all of this time, it hasn't really changed in size, though the center does appear to have gotten darker, and the very center looks almost like a light scar.

Of course, I resorted to Google, and found just about nothing that looks like what I've got. The closest I found was radial melanoma, and that, of course, freaked me out. I've scheduled an appointment to get a referral for a dermatologist, but that's a few months away, and I was hoping for some opinions in the meantime. I've linked to the image below.

https://i.imgur.com/vGFffFT.jpg

Honestly, there are times when I think it's nothing to worry about and times when it freaks me out. Sometimes I'm convinced it looks too light to be worrisome. Other times, it looks too dark. I know you all can't give me a diagnosis, but your opinions are very welcome.

Thanks!

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Replies by: jennunicorn, Bubbles

Hi, newbie here.  Fiancee diagnosed initially as Stage IIB.  Primary tumor 4cm + upper left arm.  3 surgeries in since initial diagnosis in February.  2cm margins taken at primary and axillary nodes (17) removed on  3/9.  Node 2 lit with “cluster” per Oncologist.  Restaged to IIIC!   Referred for Opdivo treatment and initially scheduled to begin 4/30.  Drain removed, healing well.  Seeing a lymphedema PT twice weekly. Found out last week that treatment oncologist does not take Medi-Cal so meeting with new oncologist 5/8.  Awaiting B-RAF results as well.  This waiting is definitely the hardest part!  Also concerned about insurance issues.  We are in the No. California foothills.  Any recommendations on oncologists near Sacramento, CA? 

VicnRan

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Coragirl's picture
Replies 3
Last reply 5/1/2018 - 9:02pm
Replies by: Coragirl, Bubbles, Johnjk04

My husband told me today that they found a small tumour in his lung on his last scan. He kept this from me for a month. I have a pretty bad anxiety disorder and i know he was trying to help me but oh my gosh! I need advice on how to not fall apart. How to go forward. What treatment should be do? Is this the beginning of the end? 

Amie Taylor

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