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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Sharon93065's picture
Replies 3
Last reply 5/26/2019 - 5:24pm

Hello Melanoma Family!!!
I will scroll down reading posts from "Forum Friends' who have helped me these last 2 years!
I am happy to see Bubbles and Melanoma Mike still posting and will read about others.
Diagnosed Stage 4 May'17. 3 of 4 combo cocktail Opdivo/Yervoy liver enzymes: hepatitis
d, 4 months of Prednisone. Started Opdivo maintenance Jan '18. I still get 1 mg (90) infusions
every 2 weeks at Kaiser Woodland Hills. with bloodwork several days before. Pet Scans every 3 months, haven't had brain MRI in a year, I had 5
within a year tho. After 2 years of the same oncology nurses they are amazed that I am the lowest dose
of Opdivo they have administered to any patient. Dr. Wang said I was his first patient to get such a low dose.
Worried me initially. \
Just had latest Pet scan report: still NED!
Had lung mass, lymph node in armpit, groin, mass in chest, by pancreas-7 total that could be seen.
Dr. said still Stage 4. But tested positive for the what I call mutant gene ha! and can get targeted therapy and radiation etc if necessary going forward.
72 year old grandma of 6. I take Sadie my daughters labradoodle to Dog Park. Have been on 3 cruises in last year. I have a lot of arthritis and use a cane now.
Short term memory is bad. Was referred to Palative Care. Trying Retalin to see if it will help with fatigue. Osteoarthritis, takin glucosamine for it.

Sat by a patient on my last treatment, over 80 years old, his bladder and kidney cancer gone.
His wife hospitalized but ok with intestinal problems just finished all 4 combo treatments. Melanoma tumor on leg shrank,.
Seems like those that are fortunate to have all 4 combo treatments do suffer some stronger side effects.
My worst ones was the brain fog and rashes.
Again thanks to all that have helped me with well wishes, advice etc these last 2 years. You gave me hope! (now I will scroll to see how my (forum friends are doing)
Blessings, Sharon

Sharon, Simi Valley

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Happygal's picture
Replies 14
Last reply 5/26/2019 - 3:00pm

This was not what I was expecting... I had an MRI in January and it was all clear. I had one yesterday as i have been a little disoriented. They found over 20, some inflamed and all throughout.
They want me to start full brain radiation next week.
I am so .....
Don't even know the words, scared, mad, at a loss right now


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MarkR's picture
Replies 11
Last reply 5/26/2019 - 1:26pm

There have been a lot of tough posts on here recently with a lot of people going through difficult times. With my next scans only 3 weeks away, which I don’t have much hope for, I thought I would offer up some things I have doing to make myself feel better. I have been Stage IV for 18 months with deep mets in my arm and multiple lung nodules, have previously been on Ipi/Nivo with pretty bad side effects and started Nivo mono after 2 surgeries and progression 3 months ago

I have been really trying to increase my exercise levels by cycling or running 3 times a week and completing a number of charity bike rides for a local hospice (seemed like a good investment!!) and the charity that supports my hospital. This makes me feel like I’m having an impact with my life and doing something of use.

I also started to think about legacy some time ago in case treatment doesn’t work out, that went beyond my children. I was fortunate to be asked to get involved in a project at work to reduce drownings in the Thames (the river that runs through London that I am responsible for) many of which are as a result of suicide. I decided to throw myself into this as I saw it as an opportunity to make a difference and took on the role of leading the project. Earlier this week, after a year of really hard work, Prince William launched the strategy on our behalf.. My yearning to achieve some sort of legacy, should the worst happen, has been completed and I get a lot of comfort from it.

We all have our ways of coping but I thought I would share mine in case it helped others to cope or find a way forward. If you are interested, the news article is linked below. I am the guy in the white shirt on the boat.

Best wishes

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KellyH's picture
Replies 7
Last reply 5/26/2019 - 12:49pm

Today was my son’s last Opdivo treatment!!!! One year of treatment done with minimal side effects, mainly just fatigue but he made it!!!! He had a brain MRI and CT scans of his neck and chest last week, all clean, so he is officially one year NED!!!!! All great news I know, but today I find myself so excited that we are at this point but yet so afraid of the just wait and watch now. After his treatment was done today, and they removed his IV, I could not help it, I started to cry. Ridiculous I know.....but this year has been such a roller coaster of emotions and I know it is far from over.....this road is long.
My son turned 18 during this last year and started college. It’s been a little rough on him but he did it., and just short time ago this diagnosis would have never allowed that. We are extremely blessed and I am forever grateful.
So now I am going to try to enjoy the summer as worry free as possible and savor this moment. After all this is a big victory!!!!!

Prayers and love to all!!!!

Kelly :)

A Melanoma mom ❤️

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Anonymous's picture
Replies 1
Last reply 5/23/2019 - 2:21pm
Replies by: KAP715

Hi, if a mole shave biopsy pathology results are mildly atypical with involved margins and residual pigment is left should the mole be re-excised for clean margins or can a wait and watch approach be used? Thanks for any insight.

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anniemac's picture
Replies 2
Last reply 5/26/2019 - 10:43am
Replies by: lkb, KAP715

I had a wide excision done on my calf about 5 weeks ago. Most of the wound has healed very well.
The top half and the concave part is almost together and seems to be healing. I have had some swelling in my leg so it seems that the scar healing is coming a little apart.
I am using Vaseline and keeping it covered.
Any advise. would be appreciated.

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KAP715's picture
Replies 9
Last reply 5/24/2019 - 12:47pm

Originally diagnosed stage 1 in 2014. Recently found a lump in my neck and the biopsy came back positive for melanoma. So now I'm stage 3b. Signed up for a clinical trial for neoadjuvant pembro. I'll find out Friday if I'll get 3 doses of pembro before radical neck dissection or surgery first followed by pembro. I work as an electrician, any advice on how surgery and pembro will affect my being able to work or life with young kids in general? Here's a link to the trial if anyone is interested.

Diagnosed stage 2 Oct 2014. Stage 3b May 2019.

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Happygal's picture
Replies 2
Last reply 5/22/2019 - 9:46pm
Replies by: guynamedbilly, Happygal

So ... my last IPI/NIVO infusion sent my liver enzymes flying, (kind of figured that was going to happen.) I am supposed to start my Nivo maintenance infusions again tomorrow. I speak to the Dr today to find out what he wants me to do.
One of the things I am noticing is my mind is having a few issues. I didn't know where I was for a while, very confused and disoriented. Luckily this happened at home, as I work at a prison, (not a good place for this to happen)
It has happened a few times now, so the Dr is having me do a brain MRI tomorrow to make sure nothing has changed... hopefully it is just the liver acting up.
I am staying positive, really want to keep working.
Here we go, another hill to climb!!

Thank you for your support as always!

diagnosed April 2017 stage 3c, NIVO 11 months, NED until Dec 2018, Stage 4 metastasized to liver and lungs, Jan 2019 started IPI/NIVO combo


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Helo15169's picture
Replies 7
Last reply 5/22/2019 - 7:49pm

. In early March 2016 I developed an open sore on left upper arm and didn’t think anything of it as I always use so much sunscreen as I am bald. I went to my primary in May and June of 2016 and many other visits but he never mentioned skin in the physicals. I was in for other things and never mentioned skin over past 3 years. I first visited a derm at age 40 in February and they biopsies 2 moles is all. They didn’t even biopsy the mole asnit was red. I I have had some autonomic nervous system issues and then neuropathy pain in late February like something was spreading. The initial shave biopsy of the lesion was benign and had congenital features. I wasn’t satisfied wirh my melanoma knowledge now. I got it excised by a very reputable derm in Chicago and the path was looked at by a dermopathologist. It was benign and the surgeon said you are good and your symptoms aren’t being caused by Melanoma from the arm. My question is could it have been missed because it has already spread to my body as I haven’t felt right since Jan 1 with the autonomic nervous system issues and getting sick a lot as welll as lump in throat and Bone pain. Could this be a rare melanoma as it came on as open sore, hurt and changed colors and elevated but the path is normal 3 years later. Thoughts? Thanks!

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MelanomaMike's picture
Replies 8
Last reply 5/25/2019 - 4:39pm

Hi ya'all, hope you all are well and in somewhat decent sprits, im good except i bailed out on my PET scan, like i just told sister Julie in SoCal im claustrophobic and got freaked out, hate to say it, havnt had a PET or MRI in a few years, CT scans i can do no problem, 5 minutes and BOOM! Done!.. i have to do it i know, my Surgeon Dr. Rupp wont do the surgery on my stomache till its done, shes avoiding a biopsy because of where its located and a possibility of it breaking up and traveling through my system to set up in another location, plus its a mobile type, it moves very easy...but anyways, just checking in with ya, good 2 be back! Hope you all are well...

Im Melanoma and my host is Mike..

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New scan was done yesterday - appoint with onco on Friday. Third treatment of ipi/nivo with chaser of inflixmaub scheduled on June 3rd.

Increased uptake and sizeof dominant FDG avid aright axillary nodal metastasis. Slightly increased size of additional sub-centimeter right axillary metastases.

Increased diffuse splenic uptake compared to liver background activity, consistent with reactive hyperplasia.

Size of Mass then and now-
3/12: 4 x 5 x 6.5 cm isolated hyper metabolic right axillary mass with SUV 13.5
5/19: 5.9 x 8.3 cm with SUV 24

Slightly increased size of right axillary node, .7 cm previously .5 cm

Will update later this week if the plan stays on course! Crazy part of all found out the appendix is within the right inguinal hernia - new finding.....

Prayers to all!


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liana's picture
Replies 3
Last reply 5/22/2019 - 5:49am
Replies by: Lucygoose, JS41989, Anonymous

I have my first dermatology appointment on June 15 to get some moles checked out. They are both on my bottom of my left foot, on the sole, and one of them has started changing shape, so I would really like to get them removed asap. Do derms remove moles on the first visit? Or is it something that they look at and schedule a removal for later on? I'm asking because I have been waiting for this appointment for a long time and I do not want to do any more waiting as these moles have me concerned.

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Julie in SoCal's picture
Replies 7
Last reply 5/23/2019 - 9:27am

Dear Friends,

Yesterday I had a PET scan, today I got the results (Yes, I know that's amazingly fast; I'm a spoiled cancer princess) . The Rock Star Doc said that I have uptake suspicious of a met in my 2nd left rib, upper left lung wall and right shoulder muscle. In many ways this isn't completely surprising. I've been coughing up a lung for months and yes, my ribs hurt. Rock Star says that all of these are probably Mel, but because I also have non-small cell lung cancer (left side, too) we'll get a biopsy and just be sure..

Bone biopsies hurt, yes? Bronchoscopy? I already know I don't like MRIs :-(

Ok friends, I know I'm getting ahead of myself and borrowing trouble, but my crazy worry is that Mel and Larry have joined forces and come back at the same time. But when I come back from my trip to crazytown, I'm wondering if any of you have had mets in muscles. If so what is your experience.

Thanks again, Friends..

Wishing you peace!

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Lucygoose's picture
Replies 10
Last reply 5/24/2019 - 9:36pm

Well it seems neoadjuvant therapy worked very well for me. All 34 lymph nodes, including the original positive one, came back negative for melanoma!!!!!!!

I’ll start Opdivo after a few more weeks of healing from the neck dissection surgery.

Fingers crossed this type of result persists in the clinical trial and the community will have a new option.


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l_lewis's picture
Replies 1
Last reply 5/20/2019 - 9:37pm
Replies by: Lucygoose

Hi all,

I’m posting to see if anyone has similar experiences with pregnancy and atypical moles and to make sure I’m doing everything I can now to manage it. I was diagnosed with my first severely atypical while 9 months pregnant. I went back to clear the margins 2 weeks after my daughter was born. I know go back for full skin checks where some moles have been photographed every 3 months for at least 2 years since the latest atypical mole identified. In my next visit two more atypical moles were found and biopsied. One was classified as moderate atypia with concern for the margins. My dermatologist gave me the option to have it further removed or simply monitor it for regrowth until my next appointment in 3 months.

I’ve read the article someone here shared about the increased likelihood of melanoma with pregnancy and am thinking being overly cautious is favorable. Both my parents have had multiple melanomas removed as well. This is my second pregnancy and I might want another but am concerned I’m potentially putting my own health at more risk? I am definitely a bit nervous about all of this and would be so appreciative of any information folks are willing to share.

Thank you!!

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