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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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 7
Last reply 5/20/2019 - 12:06pm

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 11
Last reply 6/6/2019 - 2:11pm
Replies by: ourvan, sing123, Anonymous, Aaargh, Twhite00000, AshleyS

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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beyurg's picture
Replies 4
Last reply 5/19/2019 - 11:41pm

Hello,

My husband has been recently diagnosed with melanoma. The tumor was in his arm and had a thickness of 0.8mm with a Mitotic Rate of 1. There was no ulceration. They said there were cancer cells all the way up to the margins on his original excision. He goes to the VA for treatment. The tumor board there met and recommended he have a wide local excision and sentinel lymph node biopsy. They said that his was in the “gray area” so they weren’t going to twist his arm for the SLNB, but they recommended it. The surgeon we consulted with said if he was the patient he would have it done. So my husband agreed to follow the recommended plan and get the wide local excision and sentinel node biopsy done. He was scheduled to have surgery about 2.5 weeks from the consult. A few days later we got a call stating that the surgeon saw when he was scheduled and didn’t want my husband to wait that long to have the surgery. He wanted him to come in sooner and he would be with a different surgeon. We went in for the surgery yesterday and they had not scheduled him properly to have the SLNB done. When the surgeon came to meet with him and my husband mentioned it, the surgeon said my husband was not prepped for the node biopsy because he didn’t go to radiation so he couldn’t do that. My husband asked the surgeon to review his pathology report because he hadn’t seen it yet. The surgeon came back and said that my husbands tumor didn’t meet the criteria for the SLNB anyway, so he didn’t really need it. I asked why the tumor board and other doctors had recommended it. The surgeon said he didn’t know but would try to contact them. The surgeon said he texted the chief of surgery to ask but couldn’t get ahold of him. They told us he could get the wide local excision that day and come back later for the SLNB. I stated my concerns with that based on how the wide excision can change the lymphatic pathways. The resident doctors nodded. They said we could reschedule both if we wanted. The surgeon came back again and gave his reasons for why he thought the SLNB was unnecessary and how it would expose my husband to unnecessary radiation, etc. The nurses were telling my husband that this surgeon is very good and experienced with melanoma and he should trust him. Meanwhile the doctors and staff were getting antsy because they had other surgeries to do and were feeling rushed to get on with my husband’s. We finally agreed to let the surgeon just do the wide local excision yesterday.

We are, of course, now having regrets and wondering if we did the right thing. We hope that the biopsy from the wide local excision will be clear. If we get the pathology results back from the wide local excision and it has clear margins, should we feel pretty confident that it has been taken care of and the SLNB wasn’t necessary? Or is it possible for the margins to be clear on wide local excision but there to still be cancer in the lymph nodes?

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Replies by: ed williams

Hey All!
I’m very curious about how treatment differs from state to state, and what Americans receive compared to us Northern folk :) In Canada, everything is covered by the government’s health care system, so I am beginning to wonder if that is limiting our options due to cost.

Currently patient with Stage 4, and a high tumor burden was started on Ipi/nivo as first line. 5 doses of light radiation to help with pain from bone Mets near the beginning. After getting all 4 doses, and seeing all tumors being reduced the pain got unbearable and new bone scans showed heavy progression in the bone, and he was switched to braf/mek. Responded pretty well, but still a lot of tumors. All brain mets are gone.

Now, is where I don’t understand how things differ.
I have seen stories from quite a few of you that had a similar beginning, and then got to go back on Nivo while staying on the braf/mek.
I have seen stories of people given a whole new bash of ipi/nivo after the rumor burden was reduced.
I have seen surgeries. And radiation. I have seen stories of this all combined, and I just can’t understand why it is that some patients are being given ‘’more’ treatment.

Can anyone help me?
If money were no object, what treatment plans would people be on?

Thanks in advance, again.
I can’t say enough how much I appreciate this group.

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MelanomaMike's picture
Replies 13
Last reply 5/16/2019 - 8:16pm

Hi yall, im truelly sorry for my MIA episode, i needed to re~collect myself not to mention im suffering a bit a deppression over all this Melanoma crap...I sure dont like the new facelift on this site, it took me about 5 minutes to find MPIP log in! and it was way the down the page near Australia!! we need a normal button on top like the rest of the websites across the nation...but i found you and i now digress....Im truelly sorry for my MIA bout, i posted a short message here last nite actually but i do not see it, weird, is this the new MRF? wait, i was suppose to digress from this subject...So, im alive BUT i have yet another growth {its a tumor lets be frank} on my left side of my stomach just under ribs, its a "mobile" type so my Derm Doc cant do a punch style biopsy, so, after my PET scan next Friday, my old, old friend and {surgical oncology}Dr. Rupp will view its surroundings and just dive in & take it out the following week. It musta sprouted after my last CT wich was like March, i actually found this one, either I do or the scans wich ever comes first. My scan also revealed severe blockage in my Aorta artery so, thats not good, and they see something in my lower intestine, maybe just a simple palup i hope but, with my Melanoma Boxing Record, im sure it will be another apponent to get in the ring with me...Im still doing the Opdivo, im actually going in tommorow for #17 its still keeping the lung tumors at bay {not growing} my onco say shell still keep me on Opdivo regardless if the mass Dr Rupp takes out is Melanoma or not, the Pros out weigh the Cons...Other then that guys, im ok, im just trying to get out of my darkness, i started a once a week class for us guys with cancer, its a place here in town called weSPARK {spelt just like that} its pretty good i like it, only one guy out of maybe 20 has something even close to what we have, that skin cancer called Squamous cell, so, we tend to gravitate toward each other....Youll see me more, is there any "changes" ill call it with our groups attendance? is every one still with us? i know our illness can snatch us up in an instant...Love ya guys...

Im Melanoma and my host is Mike..

www.covvha.net

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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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