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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Hello to all of you. I felt funny posting while waiting for biopsy results...like why go there when I don’t know, right?
On 6/10, I went to the derm for a rash on my arm (turns out it was because of my watch). While I was there, he talked me into an all-over body check because I’m 47 with fair skin, green eyes, some moles he could see... I clearly spend time in the sun from going to my daughter’s lacrosse games although I’m good with sunblock.
On my back, underneath where my bra straps or bathing suit straps would cover it up, he said “oh, I don’t like the looks of that.” He whispered to his assistant that we needed to rule out melanoma.
Because it was a shave biopsy and I didn’t see it, I convinced myself “hey, it’s probably not it. If it is, it’s early.”
I share custody of my daughter with her father so I didn’t have anyone around to clean the site last week. I did it awkwardly, the best I could. But I still had no visual. I couldn’t really get one in the mirror.
Last night my daughter did it for me and took a picture.
Now I’m scared.
It was the size of at least 4 pencil erasers. And there is still mole there. Multicolored.. I can see myself that the edges were wild. And if I’m honest, my back has been itchy for months, maybe longer. I wrote that off to dry skin caused by the heat in the winter.
And there is still mole there. The doctor told me that I should have results by 6/24.
He also said, “you seem like a very nice woman.”
I thought that was an odd thing for a doctor to say. He was a nice man. But now looking back I’m wondering if he knew - this was after he took the biopsy. I felt like he was feeling bad for what he knew he was going to have to tell me.
He also took a spot from behind my ear.
Is this normal to have something remaining post-biopsy? Am I freaking for no reason?

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Newmanbell's picture
Replies 1
Last reply 6/18/2019 - 10:59pm
Replies by: QuietPoet

I was just diagnosed with melanoma in situ and it comes out next week. My question is how many of you had a recurrence? My husband is also Stage 3b melanoma and just finished 18 months of Opdivo. Can't believe I have it now too. The melanoma is 1.1x1.1x0.6 cm is that large?

Thank you for listening. Donna

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Carlsbad317's picture
Replies 3
Last reply 6/18/2019 - 10:22am
Replies by: jbronicki, marta010, MelMel

As the side effects separate one from being able to “live”- and the question of quality vs quality echo- what words can a caregiver/family give to the one wanting to give up?
From 100% active and full of life to basically lifeless due to the fatigue, dehydration, thrush, perceived inability to swallow due to radiation near throat... in a nutshell “severe toxicity.” Again....
The feeling that the tumor is bigger and physically you are getting smaller. The lack of wanting to understand immunotherapy takes time. And three treatments - now the hopeful benefits will start showing.
My dad can barely move from one room to another- four hours a day at the clinic for IVs of saline, potassium, nausea and the last one escapes me. He is done emotionally-
Sympathy -Empathy -Support -Holding his hand -Positive Reinforcement- Reminders he is all most done....
Are all words and actions that almost make it worse for him.
Are there words? We have told him it’s a process, we have encouraged him to not make decisions such as stopping treatment on a bad day- wait for a day that you feel OK- then tell us you want to stop.
For everyone on the forum and all that consistently share their wisdom and experiences I am very grateful- this page is amazing.

Hanlon

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JustJaren's picture
Replies 2
Last reply 6/18/2019 - 11:15pm
Replies by: Baby_Girl, QuietPoet

Hello All!

I know that this can be a place of warranted fear, worry, etc. but what you do not see often is the GOOD news.
Generally once people have recovered from their initial surgery/diagnosis/treatment, if they are lucky enough to not see the beast again, they just go on living and do not come back to post.

Well, even though it has only been 29 months, I wanted to update for those newbies just getting here, afraid and bewildered.

I have not posted in more than 2 years because I have been lucky enough to stave off the beast.

For the purpose of this post:

I was diagnosed with a .86 melanoma on my thigh in January 2017. After a wide excision and a sentinel lymph node removal, I was bumped up to a stage 3C, as they found a few cancer cells in the sentinel node. After much research, consult with a melanoma specialist and some deep thought, I chose NOT to have the full dissection. I continued to have the scans every 3 months, where my thyroid kept lighting up. Previous to the mel diagnosis I had discovered nodules on my thyroid and a biopsy came back benign, so the first time my thyroid lit up no one thought much about it. 12 months later it kept increasing in uptake so we went 0n for another biopsy. This one came back inconclusive. After 3 inconclusive biopsies I decided to have my thyroid removed. That was August of 2018. Turns out it was very early stage thyroid cancer. We removed half my thyroid and I will be on meds for the rest of my life.

Thankfully all other scans have come back clean. I "graduated" to scans every 6 months in January. I will get my next follow-up scan the first week of July.

Anyway, I wanted there to be a post, for that newbie like I once was, to see that not all stories end up with medicines, continued surgeries, lymphedema, etc.. Sometimes things go as well as can be expected and we just go back to living. :)

Does that mean I am out of the woods? Of course not, but I have made it this long recurrence free and am so very happy that I have. I wanted someone else to read this and have the hope that they too, will be giving an update in 2 years that life continues to go on, happy, fulfilled and as normal as possible. Just know that right now you are devastated, but once I recovered from my initial surgery and the debacle with my wound popping open, my life slowly got back to normal and yours will too. My husband and I will be taking our first vacation since the diagnosis this August and have a trip to Jamaica planned later this year for my 50th birthday.

I hope I am not back seeking support, but instead, continuing to return to offer my support.

Carry on warriors! KEEP HOPE ALIVE!

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MelanomaMike's picture
Replies 2
Last reply 6/18/2019 - 11:19pm
Replies by: BrianP, Bubbles

Hi guys, i imagine some of you may know and have experience in this, does either a Colonscopy or a Endoscopy reach the Jejunum area of the small intestine? Apparently thats where the "light up" occured in my CT & PET scans...any word on this would be appreciated, i couldnt find any answer on the web, Mayo, Amercan Cancer etc...thanx

Im Melanoma and my host is Mike..

www.covvha.net

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Gene_S's picture
Replies 6
Last reply 6/18/2019 - 8:24am
Replies by: mary1233, Bubbles, Gene_S, Edwin

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 8
Last reply 6/17/2019 - 6:39pm

I am starting Opdivo tomorrow and wanted to see if you have advice for me. Is there anything I should do to prepare?

I have been researching and it looks like it’s hard to know how each person responds. I would love to hear your thoughts.

Thank you!

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Melody55's picture
Replies 6
Last reply 6/18/2019 - 5:24pm

I’m new to the forum. Diagnosed in Dec 2018. Had surgery in Jan 2019. Started Opdivo in March. My melanoma was at the base of my fourth toe. My surgery resulted in the amputation if 3 toes. Currently my scans are good. I’m scheduled for -2 treatments -1 every 4 weeks. I’ve had some side effects but have managed. I’m just so glad to find this forum. It’s hard to find someone to talk to

Melody 

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MelMel's picture
Replies 1
Last reply 6/17/2019 - 11:56am
Replies by: melanomamafia

Danish study links hydrochlorothiazide, a diuretic to increased risk for lentigo and nodular melanoma.

https://www.medpagetoday.com/hematologyoncology/skincancer/73157

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Maureen038's picture
Replies 7
Last reply 6/18/2019 - 11:29pm

My husband, Bill had scans yesterday and they were excellent!! It’s been such a long journey with 3 clinical trials, 3 VATS surgeries, 1 liver surgery, DTIC and now being on the second Her2 drug regimen after he had lung nodules on the first drug. Thanks so much to Sloan-Kettering for finding out he has an over expression of the Her2 mutation. He has some neuropathy in his fingers and feet and he has restless leg syndrome, but he is doing so well!!
Thanks to the many wonderful people on this board for helping me with awesome advice and support especially Celeste, Brian P and Ed!! I hope you are feeling better Celeste!
Love to all!
Maureen

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RichInLife2's picture
Replies 2
Last reply 6/14/2019 - 1:55pm
Replies by: Bubbles, RichInLife2

Turns out that fecal transplants to improve gut biome by transferring beneficial gut flora can also transfer harmful bugs too. Researchers will have to move more cautiously in the future, screen donors and their samples. I think that this also means that any hope of fast-track trials in the near future are probably dashed.

https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-pote...

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guynamedbilly's picture
Replies 5
Last reply 6/17/2019 - 12:06pm

I've reached the first fork in the road that I am having trouble deciding on. I have possibly six lesions in my lungs and possibly two in my liver, along with others that have recurred in my skin.

My primary Oncologist has recommended stopping immunotherapy currently and not undergoing radiation for tumors in my lungs and instead signing up for a trial for MGD009. I think one of the reasons they recommend this route is because it's an easier treatment path than radiation and all, and it's a promising drug also. There's only a possibility that I could get on this trial anytime soon. I don't know the odds, but it's not guaranteed.

The 2nd opinion is to continue immunotherapy and add radiation to the two largest, riskiest lesions in my lungs. Also, start another round of IPI/Nivo. IPI/Nivo did cause the lesions in my liver and one that was near my kidney (that we are unsure of atm) to shrink, but the ones in my lungs still grew. I have not had radiation treatment internally yet. Best hope is an abscopal effect response will trigger an immune response in the other lesions. This is all while waiting on my TIL therapy cells to hopefully mature properly. The big wrinkle to me is I showed three potential trials from my primary Onc to the 2nd opinion and the one they picked out and liked best was the MGD009 trial.

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Kelley888's picture
Replies 6
Last reply 6/17/2019 - 1:12pm
Replies by: Kelley888, Melody55, MelMel

Hi. I have consulted this forum often in the last three months, but this is my first time posting. I was misdiagnosed in Dec. 2018 with an ovarian adnexal mass (grapefruit) that turned out to be recurrent melanoma (15 years after a 1a tumour was removed with negative SNB). A small met had also developed under my breast that three doctors had dismissed as nothing. On the day of the surgery by a Gyno-oncologist, I pointed out the breast lesion, which had grown considerably. I think he may have realized at that point that he was not dealing with a gynaecological issue, but he operated anyway. The preliminary pathology for both the mass and the lesion was positive for melanoma.
It was a nasty recovery and, between the surgery and the first dose of Keytruda, the blobs spread like wildfire. About 30 subcutaneous lesions developed in the week before and after my first treatment as well as lung/adrenal/liver/pancreas mets.
I had hyperthyroid issues, now finally under control, as well as insane fatigue and pain in my lesions and everywhere else. Lots of bizarre side effects that came and went. Most of the visible lesions have disappeared. Not sure about visceral mets, the CT will be done down the road. I just did my 4th dose three days ago. I had been feeling almost normal. By yesterday, I had abdominal pain and nausea that was absolutely insane. Today the nausea is gone but my gut still hurts a lot. Not as much as yesterday, but I have trouble walking. Have any of you experienced anything like this?

Kelley

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MarkR's picture
Replies 6
Last reply 6/18/2019 - 9:39pm

Went to see the Dr today to get the MRI & CT results from earlier this week after 3 months on Nivo Mono following progression earlier this year. Some good, but not great results, in that the Lung nodules are ‘stable’.

He did say there was a very small amount of growth in some but believes that may be some enlargement due to treatment. When I was on Ipi / Nivo my 3 months scans actually showed progression to my lungs (although it wasn’t identified as that at the time) and then I had a partial response at the next 3 month scan. I’m hoping the pattern repeats itself this time.

As I haven’t had any side effects as yet - its on with another 3 months of Nivo mono and see what happens in 6 months

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