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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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!
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 12
Last reply 5/28/2019 - 6:49pm

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 3
Last reply 6/19/2019 - 6:36pm
Replies by: egamb001, Anonymous, 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 4
Last reply 5/24/2019 - 11:02am

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 5
Last reply 5/24/2019 - 9:49pm

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 4
Last reply 5/25/2019 - 10:00am

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 18
Last reply 5/23/2019 - 8:53pm

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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