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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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 1
Last reply 5/19/2019 - 9:01pm
Replies by: Bubbles

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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Anonymous's picture
Anonymous
Replies 2
Last reply 5/20/2019 - 2:46am
Replies by: obtu.bt

3 rounds of Opdivo/Yervoy treatment and now has severe edema in her legs/feet. Anyone else experience this side effect? It’s been going on for 4-5 months now and last treatment was in December..

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Anonymous's picture
Replies 13
Last reply 5/19/2019 - 8:02pm

My husband was recently diagnosed with stage IV metastatic melanoma after having what was originally thought as a cyst on his abdomen removed. He had a wide excision of a melanoma 3 years ago and we were told that he was ok after that and there no other treatment he needed to do at the time. He is 33 years old and we have an 8 month old daughter. When we got the stage 4 diagnosis, the oncologist hadn’t even seen the PET scan yet and they told us he had a 5% chance of survival. We got a second opinion 2 days later and the PET scan had since come back with no evidence of any other melanomas on it. Then the oncologist recommended he start Keytruda and told us the survival rate was 35%. This is such a scary survival rate if he has no evidence of the disease. I have been physically sick since finding this out, unable to eat or concentrate and constantly cry. My husband is being strong and is determined to beat this for our daughter. Has anyone else been in a similar situation and have an encouraging story?

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Hi folks,
After being 15 months NED my pet results show some high values between 3 to 8 on different zones on my body. Would you please share your experiences?

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Hello there! 28-year-old, less-than-slim (okay, 227 lbs 5'2") male here, if that helps with context.

This might be completely nothing (well, at least not melanoma, and may not even be anything serious), and I might just be wasting anyone's time. Still, I'm kind of worried about these two things on my chest ( https://i.imgur.com/r0jZjmz.jpg ). My "best" personal diagnosis is a Spitz nevus. Big, red, shiny, itchy on and around it, occurred in a cluster (just two), very slow growing (from 2015/16, hasn't changed in maybe a year or two). But it's also pretty tender and painful on and around it. Perhaps even two inches around it. The tenderness comes and goes though. That could just be an extension of the itching. Maybe the constant stretching and squeezing of my chest as I move around the day irritates it. I'll sometimes sleep on my left side and find it shrunken for a few hours, but really, it's just more bunched up from being squeezed.

My worry is that it's a really, really slow-growing nodular melanoma. Still, it's just a worry. My bare chest has not seen sunlight since I was a kid. Had sunburns maybe once a year until I was 16. Pretty moley skin, including on my chest (maybe four or five). No history of skin cancer in the family, but my father, his mother and father all passed of liver, lung and throat cancer respectively (butI never drink or smoke, not even once in a super wolf blood moon).

I'd just get it checked, but I have no income currently and no insurance (live with my mother, not a lot of money and I have some physical and mental issues that make finding work difficult, but I'm now in therapy, so here's hoping it helps!). We're going to try to get me indigent care until I feel comfortable in my won headspace to get a job, but the sudden death of my uncle (which is probably making me more worried than I might need to be. nerves, ya know?) has thrown so many monkey wrenches in so many plans.

I guess I just wanna know if I should just convince my mother to drive me to the emergency room or if I'm likely to be okay for the several month process of getting indigent care. We're scared of a bill half the size of a paycheck if we go to a walk-in clinic. Should we be?

I just figured that maybe y'all would have some advice for me. I've looked around, and it's honestly good for me right now to see people encouraging others to keep going through hardship. The desire to help those we may never meet is, honestly, something that I enjoy seeing in the world. Even if my story ends not being applicable to this site's mission statement, y'all are doing dang good work.

Thank you.

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Well, it is time for my 4.5yr flare-up, I just want to make it another 4.5yrs. My lung mets are causing serious issues. I had a massive Pleural Effusion and the fluid biopsy results came back after a week of testing. The results were positive for melanoma. I also had a reoccurrence in January on the scar of the original site, my left groin, I had several surgeries in this location and I am surprised it took 8.5yrs to show a reoccurrence. So after this last surgery, I no have a 14in. scar looks like half my leg was cut off. I can live with that but I think this latest groin nodule also triggered additional metastasis. There is about a 2% chance that melanoma results in Pleural Effusion, am I really that unlucky? Now I am also diagnosed with a diffused interstitial infiltrative pattern of lung metastasis and this is even rarer. And it gets better, I am told my prognosis is months not years even with treatment, so with all the side effects I have endured the past 9yrs I have to decide, do I forgo treatment and enjoy the time I have or do I go all in and fight this to the end(one end or another). I have decided to fight this but the advice I am getting from some VERY good DRs who have helped keep me alive for 9yrs and Yervoy(IPI) treatments? Isn't that going backward? I failed to complete keytruda due to side effects, I removed from a trail of a cocktail of mekinist, taflinar, and phenphormin, and could not even handle mekinist and taflinar alone. I really don't know if yervoy is going to do the trick and I am not sure the combo of yervoy and opdivo is much better(nor tolerable).

My only hope is the Pleural Effusion was actually due to an infection and that infection is also showing up as the fluid/cloud in my lungs. There is still the fact that melanoma was definitely in the pleural fluid but when initially drained it was a light wheat color not black or dark as you would expect malignant fluid to be. I have a PluerX cath in my chest that was draining wine color but it is also now wheat color and actually very little volume and is coming out next week.

Any lexperience with latest treatments? Any thoughts on the Yervoy approach? thanks for reading....

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Johnjk04's picture
Replies 5
Last reply 5/19/2019 - 8:57pm

This is a very interesting TED talk with Dr. Stephanie Culler.. She talks about our gut microbes being the most crucial part of our immune system. By adding to our missing microbes, Dr. Culler hopes to increase the complete immunotherapy response rate up to 50 - 70%. Les, you have been writing about this innovation ever since I was a young boy.

https://youtu.be/_N00V_Zk0TQ

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Happygal's picture
Replies 4
Last reply 5/19/2019 - 4:25pm

Hi there,
I went on the IPI/NIVO combo in January, was able to get 3 infusions in before my liver enzymes went crazy and they stopped the infusions and put me on Prednisone (Which was amazing!)
My liver calmed down and I recv'd the last IPI/NIVO on 5/2. I have done pretty well, just really tired, which I have come to expect with having already done 1 year of the Nivo. I am still on low dose (20 ml) Predisone daily, I have noticed that about 2 weeks after the IPI/NIVO I usually feel pretty crappy and I can feel it coming.
My liver enzymes have jumped back up and I am supposed to go back to bi weekly NIVO next week. A little worried about all the side effects, and if I will be able to continue...

My last CT scan in APRIL showed no further growth which is wonderful!! Now just trying to get thru the roller coaster ride called treatments and see what my body will do with all of this.

I do have one question is that I have heard taking the steroids while doing immunotherapy is not necessarily conducive to healing.

Thank you for this place to be able to get my concerns out. It really is the only place I feel I can put these thoughts out so it isn't hurting those who are concerned and scaring them more than it scares me!!

Tyais
diagnosed April 2017 stage 3c, NED until Dec 2018, Stage 4 metastasized to liver and lungs,

Tyais

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/15/2019 - 9:08pm
Replies by: Twhite00000, AshleyS, ourvan, Anonymous

I'm sure I'm being way over dramatic, and I realise that panicking serves no good purpose, and I don't want to upset anyone... but the bottom is falling out my world and I am so scared.

The love of my life is 9 months pregnant with our first baby. She has had a dodgy looking mole for years, many years. Finally I convinced her to have it seen to, and at this stage all that has happened is the first consultation (within 2 weeks of seeing her GP). The dermatologist didn't hesitate in saying that it needed to be removed. I'm throwing money at the problem and having it removed tomorrow. With 4 weeks until the baby is due, I can't have her in even MORE discomfort.

The mole is 15mm across, flat, dark patches, asymmetrical... all the scary things. It's remained the same ( iTHINK/hope) for many years, but it's all feeling VERY real. We have no support due to other family health problems. We don't want to worry them unduly.

I was so desperate for her to have a nice relaxed end to her pregnancy and to treasure the happiest time in her life, and now I, and I am sure she, are so scared it physically hurts. I'm scared for the worst, I'm scared for the babe, I'm scared of the stress it's causing... I never understood the term petrified until today.

I've got so many questions, but I don't even want her to see me researching in case she catches this fear. So far, I'm downplaying everything for her... saying that it's just having a little mole removed.... on some level I am sure she's as scared, but I just can't stop seeing it as carcinoma, nothing else looks like this...

I'm going to burst. If anyone out there can magically make things better, that would be GREAT! I just don't know what to do.

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msnow's picture
Replies 4
Last reply 5/20/2019 - 2:50am
Replies by: obtu.bt, maryb-z, Bubbles, msnow

Hi all, hoping for some insight. Will have my first PET/CAT Scan in a few weeks as a follow up for a health issue most likely unrelated to my early stage melanoma diagnosis last year. For peace of mind I consulted with my melanoma oncologist/surgeon from a well known melanoma cancer center.

Can inflammation/infection cause false positives for cancer metastasis?
Numerous people have told me they were very stressed after their PET scans showed possible cancer only to find out after biopsy and further testing it was simple infection/inflammation.
Can I assume my melanoma specialist and radiologist will be able to clearly decipher most false positives? Hoping to avoid unnecessary biopsies or procedures. Thanks for any insight.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/15/2019 - 1:21pm
Replies by: Anonymous, tedtell1

If you want help with your fight against melanoma do a search on "Melanoma+Microbiome"

Also" the sun DOES NOT cause melanoma but sun screen does" Good luck

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iskitwo's picture
Replies 5
Last reply 5/17/2019 - 5:24pm

I had my first opdivo/yervoy treatment about a week and a half ago. So far no major side effects. I have had some rash and just not feeling great but still managing a full time job and 2 kiddos so I'm not complaining. Hoping that the side effects stay mild and this treatment does the trick. My tumor it on the hip bone and has been more painful since treatment started. Just wondering if anyone else experienced this?

Missy

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Hi all. New to this community. Went to dermatologist on 4/15 after my boyfriend noticed a mole that had changed in appearance on my upper back. I was concerned because both my mother and little sister had been diagnosed with some form of skin cancer within a week of each other only weeks before my appointment. (Mom had SCC on her shoulder and little sister had stage 1B melanoma on her inner thigh.)

Doctor wasn’t very concerned at first and even the nurses were trying to rush me out with little concern. Then I get the call a few days later that it was melanoma and I would need WLE. Doctor said some of the results on the pathology report were inconclusive and I haven’t seen it myself yet. She ordered a test (genetic I believe) but those results haven’t come in and she hasn’t staged me.

WLE took place this past Thursday 5/9. That was an ordeal. I’m strawberry blonde with green eyes and they were having trouble getting the local anesthesia to work. (Ouch. Please stop again. I feel that.) Now I have a gorgeous 4 inch scar on my back and a boatload of stitches. Doctor seemed frustrated that my test results hadn’t come back but said she didn’t want to wait any longer than we had to perform the WLE.

Now we are playing the waiting game. Doctor indicated that these test results in addition to the WLE results would determine whether or not she’d be sending me to an oncologist. The whole thing has been a strange experience. I’ve done quite a bit of reading on here but it seems that pretty much every case is unique. Fingers crossed for more information soon.

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