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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Happygal's picture
Replies 1
Last reply 5/22/2019 - 3:58pm
Replies by: 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!

Tyais
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

Tyais

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Helo15169's picture
Replies 6
Last reply 5/22/2019 - 7:36pm

. 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 2
Last reply 5/22/2019 - 5:15pm
Replies by: dbJoe, Lucygoose

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..

www.covvha.net

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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.

Impressions:
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!

Hanlon

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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 5
Last reply 5/21/2019 - 10:34pm

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!
Julie

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 6
Last reply 5/21/2019 - 9:57pm

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.

Lucy

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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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Broersma's picture
Replies 3
Last reply 5/21/2019 - 1:55pm

I was diagnosed wtih Stage IV Melanoma (metastases to multiple lymph nodes in my neck, chest and axilla) in late 2017. My original malignant melanoma was discovered in approximately 2001 through a suspicious mole on the forearm. The mole and surrounding tissue was removed. No further treatment was needed at that time. I was examined regularly by my dermatologist since that time.

I have been on the Mekinist/Tafinlar combo with late 2017 and have done very well. The tumors shrunk very quickly and have remained as such. I have experienced many of the common side effects such has diarrhea, vomiting, chills, fever, very swollen feet and ankles. I have also experienced occasional skin rash type problems. I have not seen much information on skin problems listed, so I'm reaching out to the community here to see if anyone is experiencing similar side effects. Every few months I break out with raised red welts/blotches on my arms and legs. There is no significant itching or pain. I am, as we speak, covered with blotches that have spread from my arms and legs and now cover my arms, legs, chest stomach and face. Anyone have a similar experience?

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JS41989's picture
Replies 1
Last reply 5/20/2019 - 9:34pm
Replies by: Lucygoose

I checked in about 10 days ago about having 5 moles removed for biopsy. I received a call from the doctor today that 4 of them came back clear/negative. However, the largest mole came back "moderately abnormal" and I needed to come in to make sure it was completely removed. He seemed encouraged that I had nothing to worry about, however he now wants to take off 3 or 4 more moles on my back to make sure we error on the side of caution. Was hoping for 5 "all clear" but I guess I should be thankful with a moderately abnormal and not melanoma. Now to wait 2 more weeks for the rest of it.

JS

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caman's picture
Replies 3
Last reply 5/21/2019 - 1:17am
Replies by: caman, Lucygoose

My primary size was a 4, had it removed, with a unknown SNLB due to failure of the procedure, that was in 5/2018. I followed up with 3 month scans and amazingly enough, this last scan in MAY, I am still negative and no signs of MEL anywhere.

Two Questions:

My Dr. said if my SNLB had been successful, the result would of very likely been negative. He said if it was positive, my lymph node would of inflamed by now. Does anyone here agree with that logic?.. How significant is a Negative SNLB? Do statistic turn into my favor?

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EricaInMS's picture
Replies 5
Last reply 5/21/2019 - 10:11pm

Has anyone gone to a reduced dose/longer time between infusions of Nivo due to side effects? We’ve already dropped the Ipi after 2 infusions due to liver damage, and it’s looking like the David’s liver numbers are creeping up on just the Nivo. So far his response rate has been excellent, with one tumor gone and the other down to half the diameter.

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Meka.tx24's picture
Replies 3
Last reply 5/21/2019 - 2:32pm

Hi! I will do my best to keep this relatively short. I’m a big talker. I requested to see a dermatologist to look over my plethora of moles and earlier this month I was seen. I’ve had this done by other dermatologists and they’ve always had me undress and check one body section at a time. This doctor had me stay dressed and just lifted me shirt to look at my back. The majority of my moles are there but I have them all over here and there. I had to personally show him this pinkish colored spot under my baby toe. After the brief check he said he was suspicious of two on my back, one of which I was concerned with. He cut them out that same appointment. He cut pretty deep and cut a few millimeters away from the moles. They were sent away to be tested. The two weeks I had to wait were a pain in the butt. The large one was right on my spine and got really red so I was prescribed an antibiotic which I had to use the whole two weeks so they needed to be bandaged the whole time. Ugh. So now I’m back to have the stitches removed. He almost walked out without even telling me what the outcome was. I asked and he said they came back abnormal and were dysplastic nevus with moderate atypia.

Now I know they are benign but I like to learn all I can when I get a new diagnosis as I’ve had a few. After giving me the name he said it is not melanoma but melanoma can be really quick and being that I have so many moles, he wants me to come back in three months. Sure thing! I will definitely be looked at again in 3 months but should it be by him? I don’t feel like prior to removing the two that he was very thorough or that he cared much. Like the one on the bottom of my toe I’ve had for years but I never thought it was a mole. I’ve always been curious to what it was and have googled a lot and learned moles on the bottoms of feet are not a good thing to have. So what do y’all think? Should I stick with him or find someone else?

Lastly, and I’m so sorry I lied this isn’t very short....that’s typical of me. So having dysplastic nevus atypia nevus, being fair skinned light hair and eyes etc...My risk goes up. Ok. What I don’t get is I read melanoma can grow in a totally new spot, it doesn’t have to be in a mole you already have. So why remove them at all unless they will turn into melanoma. Is that why they removed mine? Cause if I left them they would have or could have? Wouldn’t they be called precancerous then? Sorry if that’s a silly question. I apologize for my novel. I don’t have anyone to really talk to about this. Have a good day! And thank you!

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/21/2019 - 2:25pm

I've recently been diagnosed with stage 0 melanoma on my chest. With great respect to those fighting for their lives with this condition, I'm wondering if anyone would know the prognosis and life expectancy for someone like myself who might prefer to let things take their natural course. I'm scheduled for surgery on June 11 th, but I am not sure I want to do that.
Robert

B

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Hi everyone, I decided to make a post on here because I’ve recently been concerned with something.

I am a 19 year old female. I am south Asian, with tan skin so I’ve never used tanning beds or went out for prolonged periods of time without sunscreen. Recently when I was on my spring break back around the end of March I noticed a spot on the back of my right ankle. It doesn’t look like a mole but rather a tanned dry spot that looks lighter when I shine a light on it. Here is a photo for reference
http://tinypic.com/m/kboped/1

I wouldn’t have been too concerned however it has been over a month and this spot hasn’t gone away or gotten smaller. I know this isn’t a place for diagnosing and I understand that no one here can say for sure what it is. However, as a broke college student who already has a lot of things to worry about at the moment, I just want to know if this is something I should get checked out. I have no family history of melanoma but I know it is becoming increasingly common within young adults.

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