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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Anonymous's picture
Anonymous
Replies 6
Last reply 5/17/2019 - 9:25am

Hello all,

I haven’t posted since my initial 2a diagnosis in 2016. Since then I had a local deep recurrence and was put on Opdivo. Unfortunately, Opdivo didn’t work and recently 2 lymph nodes have come back s/p FNA + for melanoma. I was put on braf/mek in March, but after having a lot of bleeding and every other side effect in the book have only really been able to complete 2 weeks off and on. Has anyone had experience with Braf/mek? Did it help? Currently on a lower dose, but I can’t help but to be anxious about the outcome. Part of me wants to have to surgery to get the cancer out, most are saying to look into other treatment options. Also, would this put me at stage 3b or 3c? I’m 30 & a single mom to a 3 year old. Any positivity and advice is welcome. I go to Moffitt just not always confident in my care upon leaving my visits. Sending love and prayers to everyone ❤️.

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Ch256706's picture
Replies 8
Last reply 5/17/2019 - 3:00pm

Hi all,
I am currently on cycle 21/26 of opdivo and in mid March I got a manicure and pedicure for a wedding. Well two weeks after that my nail started to look infected and it was where my cuticle was cut while getting my nails done so my oncologist put me on an antibiotic. Well a month later I am now having the same issues on my toes near the cuticle it randomly bleeds and looks as if my skin is wearing away. Could this be a side effect from opdivo?? Also my tongue and mouth are so sensitive within the last month. I also have red itchy bumps on my leg that aren’t going away. I didn’t have any side effects for the first 7 months and seems like it is al hitting at once ☹️

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MBC's picture
Replies 2
Last reply 5/12/2019 - 11:39pm
Replies by: MBC, Lucygoose

Hi everyone,

Thank you in advance for your time. I am a very fair, very moley late 30's woman who is meticulous in the sun now but had tons of childhood sun exposure (stopped at 19 when I finally knew better). I've had 20 or so moles removed in my life and they were all benign except one in December 2016, which was severely dysplastic. 1.5 years prior to removal, the top layer of it had cracked and flaked off, with a red ring around it. It returned to normal within the 10 days I could get my derm to look at it and then we watched it look normal to very mildly flaky for 1.5 years until I insisted it was removed. I had the WLE and there was no evidence of further atypical cells.

I've been seen for 5+ years at a melanoma center of excellence with a mole mapper and also a local derm. The local derm there usually has shorter waits and will basically excise whatever I tell him to; the melanoma center of excellence is more "watch and wait" - hence the watching and waiting with the severely dysplastic. I alternate being seen at each place so that I'm seen by someone every four months.

Yesterday, I saw my local derm for a skin check. I asked him if there was anything he would take off, and he pointed to a mole under my bra strap along my mid back. It's one that I have had mole mapped at the other institution, as it looks like a round mole with a freckle on it. He said it was absolutely no rush, but to make an excision appointment for when he is back in town. He left today for a month's vacation, so the excision appointment is set for the first available time - 7 weeks from now. He also punched two freckles that are a little blurry and I asked him to remove.

When I got home, I compared the mole he pointed out to pictures I took about 1.5 years ago, and it seems to have changed. Instead of just having a freckle on it (which is near the top), it has a reddish-brown splotch in the bottom part of the circular mole. I am very careful at regularly inspecting my skin and somehow had not noticed this splotch. Perhaps it has been irritated by my bra/sports bra/etc? It doesn't seem like new irritation, but rather pigment.

Since the local derm is out of town, I called my melanoma center of excellence docs and the soonest they can get me in is 3.5 weeks. If I wait for that appointment, we can compare what I have today with the image that was mole mapped when I was last there, in January. I believe this mole has been mole mapped for at least a few years. So I'm tempted to wait 3.5 weeks so we can compare images and then ask them to excise that day if it really has changed that much. I can't imagine that this mole looked like this in January and it was no big deal, but maybe it's changed that much in four months? Or maybe the splotch has always been there and my at-home pics from 1.5 years ago are not great? They are certainly not as clear as the mole mapped images. I feel like my mind is playing tricks on me.

Should I wait 3.5 weeks or try to figure something else out? You can probably feel my anxiety through the screen and I apologize for that.

Best wishes,
Marie

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Anonymous's picture
Replies 1
Last reply 5/10/2019 - 2:19pm
Replies by: ourvan

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

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Zelda_Scotland's picture
Replies 3
Last reply 5/12/2019 - 2:50pm

Hi,
Has anyone else had a PICC line? What was it like? Would you recommend it?
So far I’ve had 8 infusions of Nivolumab with 18 more to go. It’s only possible for the cannulas to go in my left hand as I had lymph nodes removed from the right side. I have low blood pressure normally and the nurses often have 2 or 3 goes to find a vein. I’ve had blown veins, blood pressure dropping with the grey vision and cold sweats that all accompany it. I’ve never had a fear of needles before and am fine with blood draws but am beginning to get anxious before every treatment now as getting access seems such a problem. Could a PICC line be the answer? My main reservation is that I work with some unpredictable children at times and fear that they may unintentionally pull it or move it.
Any info welcome.
Thanks

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guynamedbilly's picture
Replies 3
Last reply 5/11/2019 - 2:16pm
Replies by: mrsaxde, GeoTony, Bubbles

After progression while on IPI/Nivo, I'm getting ready for TIL harvesting. The drug combo was effective for my kidney and liver, but not my lungs, so my Oncologist is still hopeful because he said the liver is often tough to get a positive response. They are planning to try harvesting cells from two different locations at the same time, my liver and my scalp. I'm also getting radiation lined up for my lung mets.

I still feel great, just gotta get more cutting done now.

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JS41989's picture
Replies 9
Last reply 5/18/2019 - 12:55am

Hello everyone. I'm a new member here, but have widely scanned your forum as I waited for my dermatologist appointment. My story begins about a month ago during my visit to my primary care physician for an annual physical. While listening to my breathing with a stethoscope, she asked if I'd ever had my moles looked out. Now, the answer was no. Truthfully being 30 years old I really never thought much about it. No one close to me has ever had melanoma and it really hadn't crossed my mind as a possibility. Now, it should have considering I have always had a lot of moles (30+) from my back to my arms, chest, foot, heck even have one on my bottom! Long story short, having so many moles on (especially on my back) it has not been exactly easy to track "new" or "changing" moles.

I was scheduled to see a dermatologist near my house for a skin exam, which I went to a few days ago. I undressed and sat there quite nervously, having never gone through this before. The doctor walked in and saw me for a total of 5 minutes. He asked me to lay down, visually inspected my body head to toe, with no extra lighting or instruments just the naked eye. All he said was "Yea you have a lot of moles on your back, but everything looks fine. Pay attention to them and come back in 6 months." - end of the appointment, didn't stay to answer questions of any kind. I had a follow up with my doctor yesterday and told her that I wasn't super thrilled with my experience. Not that I thought the dermatologist was a bad doctor, but that he seemed disconnected and passive. She told me with the amount of moles I have that its important I develop rapport with a dermatologist for regular examinations.

She wrote me another referral for a doctor a littler farther away, but had good reviews. I called yesterday and they got me in this morning, boom right away.

Now, my appointment today could not have been any different. He spent at least 20 minutes examining my skin with a little magnifying glass light device. He walked through why he thought most of my moles were harmless. However, when examining my back he found 5 (FIVE!!!) moles that he found to be suspicious in nature. As he was getting ready to scrape them, he told me that these moles all had either sizes, shape, or slight pigmentation issues. After scraping them off he told me that he would send them in for a biopsy and that he would call me with the news in 1-2 weeks. He also told me not to freak out because he would call for good news or bad news and missing a phone call from him did not mean I had melanoma.

I can honestly say I am pretty afraid and upset. First, the idea of having melanoma that I could have addressed sooner when I have a wife and daughter just makes me feel absolutely ill inside. Second, the other doctor simply telling me everything is fine, only to have 5 moles sent for biopsy just a few days later makes me feel so irritated and upset. The original doctor said he would see me in 6 months, like if one of these 5 moles was cancerous it could have drastically (in my opinion) affected the prognosis.

Today the clock is ticking to find out results. I can say that I feel very afraid. Thank you for anyone who read my rambling.

JS

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Linda5's picture
Replies 3
Last reply 5/9/2019 - 1:49pm
Replies by: Linda5, ed williams

Well, it looks like my run with Taf/Mek has come to an end with two new lung nodules appearing and growing over the last three months. I have already tried pembro and ipi - the only real impact came with added radiation, but had progression after and went back to Taf /Mek for 17 months.

I’ve been offered a clinical trial which I believe is called the PLATforM trial...spartalizumab plus one of three other drugs - lag525, capmatinib, or canakinumab. I will find out more next week, but thought I’d see if anyone here knew anything or was participating?

Thank you in advance!
Linda

Linda

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kb9718's picture
Replies 1
Last reply 5/12/2019 - 4:25pm
Replies by: Nympha

Hi everyone,
Hope things are going well with everyone and sending my prayers to everyone. I am just about 4 and a half months into taking dabrafenib and tramentinib daily and have just now begun to notice my hair falling out. I have pretty long hair and alot of it but it seems to be coming out at a quick pace i was wondering if anyone had any experience with this and what to expect as in if it will all fall out?
Thanks
kb

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RichInLife2's picture
Replies 5
Last reply 5/10/2019 - 12:17am
Replies by: lkb, BrianP, Bubbles, MarkR, Casitas1

I had a neck-to-toe PET scan and a brain MRI yesterday and got the results today. There was a bit of drama getting the scans and a little more drama today, but it turned out to be a drama with a happy ending., or at least a happy second act.
At today’s visit, my oncologist came into the office with a worried expression and my wife and I both thought the worst. Then he asked me if I had any pain in my lower back. I told him, yes, I had slipped on a wet ramp two weeks ago and landed hard on my butt. I’ve had back pain ever since, but it’s slowly getting better. He immediately seemed relieved. Turns out the radiologist’s report on the PET scan cited intense uptake in the L4 region, for which he suggested further evaluation. After hearing that I had fallen, my doctor said that the findings were more consistent with a compression fracture than with bone metastasis.
So, with that out of the way, he then went on to say that the scans showed no evidence of active disease, and that I only need to see him every three months for follow up scans. Oh, and that we should have a great summer. You bet!!
From hearing the words “stage IV” last July, to diabetes in November, colitis in March, and being kicked off Nivulmab treatment in April, it has been a rocky road, but it has all been worth it.
I know that there is no such thing as a cure at this time and that the melanoma could recur at any time, but now there is a much stronger likelihood that my eventual cause of death might not be melanoma. As I said to my wife, it’s time to start living the hell out of life. We’re playing with house money.
For all the brave warriors on this site, whatever stage of the battle you’re in, thank you. Your stories have inspired me and humbled me. I’ve learned that anyone’s story can change at any time and I’m not going to take anything for granted. I’ve also learned that people are not statistics. We are all writing our own story and nobody can tell us how it’s going to end.
Warrior on!

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swalters1038's picture
Replies 2
Last reply 5/7/2019 - 10:07pm

I just wanted to share this with the group hoping it might help just one person! I have a high deductible plan with major medical and pharmacy all under a single deductible. Unfortunately the Copay program provides me zero benefit as it doesn't county towards my deductible. I was persistent and cut out the insurance company and was able to get directly reimbursed my entire deductible ($5500) from Novartis. There is a reimbursement form that is provided by the company (Opus Health?), so you as the individual gets reimbursed directly. It was a huge relief for my family to not have to come up with any money for my direct health needs during 2019. Let me know if I can be of any help or give any guidance to anyone.

Cheers
Steven
2018 - 3C Parotidectomy/Modified Neck Disection, Radiation
2019 - Adjuvant Tafinalr/Mekinist Combo

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Ellenb's picture
Replies 16
Last reply 5/11/2019 - 5:02pm

Hello, Everyone,
Thank you all for the support you give on this site. I’m brand new here. I am waiting for the results of the Castle Test-tissue was sent out a week ago. My doctor does not want to discuss pretty much anything until we have the results. I’m the kind of person who likes to prepare ahead of time. Could anyone please share with me what has happened to you once you received your results? Thank you so much.
Ellen

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ed williams's picture
Replies 10
Last reply 5/12/2019 - 1:11am

Love the new lay out, but kind of wondering why patient forum is placed where it is? Would be nice to have top row billing!!!

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201Don's picture
Replies 8
Last reply 5/10/2019 - 9:45pm

I have been lurking a while and it's time for me to post. I was diagnosed in July 2017. Had original site and three nodes removed
and all came back clear (margins and nodes). Original staging was 2b. I started quarterly CT and PET scans and was fine until early
January 2019, when A nodule appeared in my lower left lung (7mm). In February I had a diagonal resection to remove the nodule
and margins. The nodule was Melanoma. So now I am stage 4 and can now be treated with immunotherapy. I just had my second
infusion with Opdivo. Two down 10 to go.. So far the only issues I have had with it have been extreme fatigue and nausea. The nausea
is not that bad, but the fatigue is tough. I have had fatigue non stop, there are times when it is less severe but
it is always there. All in all I am lucky. As far as we know I am cancer free and this treatment will hopefully help me
stay that way. I was told if I did nothing I was looking at 80% likelihood that Mel would be back, but if I did 12 rounds
Of Opdivo that would drop it to 35-40% likelihood. I think that it is worth it. So my question is about the fatigue. Are there
things to do or try that help minimize it?

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