MPIP: Melanoma Patients Information Page

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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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casagrayson's picture
Replies 3
Last reply 12/4/2019 - 8:50pm
Replies by: jbronicki, gopher38, Bubbles

I found this post by Tyais' husband:

Tonight on this Evening of Thanksgiving, Please pull together and Love one Another, Its really the easiest thing a person can do, have compassion and understanding, everything and everyone is in loan here, Tonight I am grateful for my loving wife, Please if you will close your eyes and say something nice for her.
She needs your prayers more now than ever.

Let's all say a little prayer for Tyais and Bobby.

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LIsey's picture
Replies 5
Last reply 12/4/2019 - 9:22pm

Hello all,

I'm a melanoma survivor from almost 10 years ago (right knee, stage1) . I also had breast cancer 3 years ago. (Stage 1 as well). My husband had melanoma last year on his left shoulder, now his left neck lymph node is huge within the space of a month. He was not being followed for Melanoma by anyone but our dermatologist.

So today he goes in for a CT, but I'm expecting the worst... I only know the stats from 10 years ago and I'm hoping things have improved.

I joined this board to get information and support for both of us. We have 3 kiddos we gotta raise.

Thanks for your time,

Lisey in CO

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Dear MPIP Community:

Happy Tuesday! I would like to begin providing a brief update each month to our amazing online community (that's you). This will help build our community even stronger and ensure that you stay well-connected with the MRF! And...hopefully once per month won't be too much of a nuisance ;)  I'll try to keep my updates short and sweet, I promise!

I began last month by sharing our Survivorship Survey and once again, you didn't disappoint - we are up to 460 responses! Our goal was 300, so thank you! The survey closes on Dec. 15 so if you haven't had a chance to share your thoughts, there is still time! 

Today, December 3 is Giving Tuesday! Last year, the MRF's amazing constituents (that's you again) donated more than $56,000 that went directly to funding melanoma research! This year, our goal is $60,000! And, our generous partners at Neutrogena are matching all Giving Tuesday donations to the MRF - dollar for dollar - up to $20,000, so today your donation will be doubled! 

Lastly, our 2020 Advocacy Summit and Hill Day will be held March 8-10, 2020! Registration is now open! We would love it if you'd join us on the Hill!

Happy Holidays to you and yours. Please let me know if you need anything!

Best,

Shelby - MRF

smoneer@melanoma.org or (202) 742-5945

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I posted earlier about a specific problem I am having, but this question keeps coming up in my mind.

Does the appearance of melanoma continue to change on the skin? Or will it get to a certain point and stop?

The spot I am concerned about has been there at least 4-5 years. It was never on my radar until I recently started reading about melanoma. I've had several skin checks by a dermatologist in the last 4-5 years but I am worried it was missed. It's barely visible, but its there.

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Anonymous's picture
Anonymous
Replies 9
Last reply 12/3/2019 - 7:32am
Replies by: Anonymous, LRS88, HereIam789, JudiAU

Hello everyone,
I have some anxiety about melanoma - I'm someone who fits the description of someone who is at high risk. I see my dermatologist (she is PA at a dermatology office) at least once a year - for skin checks and other non-related skin issues.
I've got an appointment in a month. I have a spot that concerns me, although I don't believe it's changed in the last five years. I have pictures and its been there at least 4-5 years. I just recently started questioning it - I had two kids in the last 6 years so I've been adjusting to a lot of skin changes on my stomach. Everything seems to have gone almost back to normal except this one spot. It is around a mole but doesn't look necessarily like part of the mole - almost like very light tan discolored skin around/near it.
Anyway, I have an appointment in a couple of days with my GP for non-skin related issues. I'm wondering if I should show him this spot and ask him to biopsy it, or wait another month and ask the same of my dermatologist. I'm concerned that he might cause me more anxiety if he comments that it should have come off long ago or something, although I've had several skin checked with my dermatologist in the last few years.
Long story short - should I wait for the dermatologist appointment? Or ask my GP? I feel like this isn't urgent because the mole hasn't changed, although the skin around it does look different than the rest of my skin and it just concerns me.
Thanks so much.

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Tsvetochka's picture
Replies 7
Last reply 12/4/2019 - 2:25pm
Replies by: Bubbles, Tsvetochka, MelMel

I've been diagnosed with gastritis and duodenitis, and I think I've had mild colitis for a while. Will all of this go away when I'm done with Keytruda?

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jennifer83's picture
Replies 7
Last reply 12/3/2019 - 8:43am

I had my first Opdivo/Yervoy infusion yesterday. My husband was scheduled to fly out of town and a small emotional breakdown in the morning caused a flight change and I'm so thankful for that.

I really thought I'd be strong enough to do it on my home and then come home and take care of my 2, 3, and 9 year old. I am on a strong antibiotic right now, so I don't know if it was that or nerves, but as soon as I got to MD Anderson, I vomited my breakfast up. Infusion went fine... I slept through most of it as I've been very tired lately. Before leaving, I vomited up all the liquids I had drank while at the hospital.

Got home and vomited more. I became FREEZING cold and laid down under tons of blankets with heavy socks and sweats. Took about 3 hrs to warm up. By night, I was feeling much better. I ate a few crackers and have had incredible thirst, so lots of water.

I feel fine today, just a bit tired. I haven't eaten anything, not hungry/ afraid of nausea... but drinking lots of fluids (water, juice, 7up).

Thankful my husband stayed home. Just wanted to give an update to all those awaiting their first infusions.

Jennifer

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Bubbles's picture
Replies 7
Last reply 12/3/2019 - 8:44am

For all of you - who provide so much to me ~

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/11/thankf...

Wishing each of you peace and comfort in this coming holiday season. Much love, les

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Anonymous's picture
Replies 8
Last reply 12/3/2019 - 9:46am

Hello everyone,
.
I'll try to keep this as brief as possible, but brevity has never been my strength. I was diagnosed with state 3c malignant melanoma (on my head and in one of my cervical lymph nodes) back in April and had surgery in May. I have been getting Nivolumab infusions every four weeks (I am scheduled for a total of 12) and have my 7th coming up on 12/16/19. I also have a second surgery on 12/6/19, as one of my more superifical lymph nodes near the original surgical incision swelled up in October and my oncologist thought it would be best to remove it all for a biopsy.

I was only 34 when diagnosed (turned 35 exactly two months after my surgery) and the old saying "you learn who your real friends are" has never resonated with me more. Don't get me wrong, I have a few close friends who have been wonderful throughout this all, some of whom I haven't even known very long (maybe a year or two), but even some of my family members have been less supportive than I thought they would be. I'm no saint, but if someone in my life was going through what I am, I would be there for them. I'm very loyal to people I love, probably because I'm quite introverted and only love a few people on this earth. I understand some people don't know what to say, or feel uncomfortable around people with cancer because it makes them think about their own mortality, but man does it hurt. I've had a lot of people say really insensitve and ignorant things to me too, which I have seen in many cancer forums seems to be a trend.

I know I should have grace with people, but it gets harder and harder. I feel like I don't have the patience to care about superficial nonsense, which seems to be the only things other people care about these days, especially with the pervasiveness of social media in our lives and the general lack of depth in our society. It's all about having fun, feeling good, and making one's life look as wonderful as possible. I call it Keeping Up With the Joneses 2.0. But I just don't have it in me to deal with it anymore. I'm facing some serious stuff and have to think about how my life will be forever changed by this disease. That I'll always be worried about my health even though before this, I considered myself to be a very healthy individual. I haven't been perfect in my life, but since my mid-20s, I've been an avid gym goer, I don't drink much, and I don't smoke cigarettes (although I stupidily used to when I was in my late teens/early 20s and occasionally in my 20s). I also was never a regular sun bather, have always been pretty good about wearing sunblock (I wear it every day) and have never stepped foot in a tanning salon. I tested positive for the BRAF mutation and my dermatologist even said I have virtually no sun damage on my body and that the genetic component to my cancer is very strong. That actually scared me even more because I realized that even if I do everything "right," this disease can still come back and probably will considering my advanced stage.

I should say that aside from my cancer diagnosis, the past year and a half has been particularly hard. My seven-year-long relationship ended in June, 2018 and I still live with my ex because I can't find full-time work (partially due to my cancer treatment and partially due to the poor economy and lack of opportunities in my city), but even if I did find a job where I could support myself, I would lose my Medi-Cal benefits which are paying for all of my treatments. As many job seekers know, most jobs these days have crap benefits, if any, and I can't risk losing my current ones just so I can make a little more money, which would be futile anyway because all of my money would be going toward my treatments. Nobody seems to understand this and I feel like both my ex and other people in my life think I'm just being lazy. In addition to my relationship ending and my uncomfortable living situation, I was passed over for a full-time position at the community college where I've worked on and off for 5 1/2 years (consistently for the past 3 years) right after I broke up with my ex in the summer of 2018. I was told that I was well qualified and that my interviews were excellent, but that it was just "really competitive." They hired a girl who had quit working there over four years ago who decided to move back to town. I missed out on great benefits that probably would have covered my treatments, a $55,000 annual salary (right now I make less than $16,500, which is the income limit to be coverd under Medi-Cal) and a pension. And I have to see this person every day of my life while I continue to struggle emotionally and physically and she has gotten married (two days before my surgery actually) and is currently pregnant. I also had an awful rebound relationship right after my long-term ex and I broke up, which was extremely stupid on my part. He really affected my self esteem and I'm ashamed I let someone do that. He dumped me two days before Christmas last year, although in hindsight, I'm glad he did because I can't imagine having someone like that in my life during my cancer diagnosis and treatment. I have also had a lot of relationships deteriorate, including my relationship with my aunt who is my only family member in town. I just feel so alienated from everyone. Some people haven't contacted me in months. Some just say insensitve things that I can't seem to get past. They don't understand and the more they try to "help" by saying stupid things like, "well at least you have a good kind of cancer. It could be worse, you could have pancreatic cancer," or "well, you did spend a lot of time outside," (which isn't true at all) or "you're going to beat this," the more I pull away. And the more I pull away, the more isolated I become. I know it's a vicious cycle that I'm perpetuating, but I just don't know what to do anymore. I'm looking for a therapist, but the list is long and I have a lot of research to do.

Thanksgiving was hard this year. I hadn't been in a "party" situation since everything happened and I realized quickly as everyone arrived at my friend's house that I wasn't up for it. I actually ended up leaving without saying goodbye, which I realize is rude to a lot of people, but it was either that or bursting out sobbing in front of 15 people, some of whom I had never met. My ex came with me because he has no family or many friends in California, plus we're still close friends. Listening to people talking about their great jobs and how happy they are, couples having babies and everyone fawning over the pregnant woman, and just being around happy, married couples while I sat across from the person who wasted seven years of my life and who never wanted to progress with me was excruciating. Not to mention that people were picking on me constantly that day. One person even joked about my cancer when I told him to stop smoking around me. He said, "well you already have cancer so what does it matter!" Another one joked about how he didn't believe I made what I brought over because it was so good (but not in a complimentary way. He was insulting me, as in "there's no way YOU made this"). I realize I'm a little more sensitive right now, but I felt these comments were beyond inappropriate. I don't even know these people THAT well. All of the superficial conversation seemed cacophonous at one point and I hid in the bathroom trying to stave off an anxiety attack and fought back tears. I managed to eat, but left shortly after because I just couldn't take it anymore. I cried all the way home and went to bed at 7:30pm.

I feel like a lot of stories I found at first on the Internet about cancer survivors were told by people who found some enlightenment in their experiences. That they have a new lease on life. They feel stronger and more in tune with what's important. I'm sorry, but I just don't find cancer enlightening at all. I feel scared, alone, and less confident in myself as a healthy person. I have managed to get back to the gym and am in pretty good shape considering everything, but even that isn't completely mitigating my feelings of despair and loneliness. I feel myself losing my patience with people more and more. I also feel like other people who have had cancer won't take me seriously because I don't seem "sick enough." I have a nice full head of hair (except for the huge scar from my surgery that I can luckily hide and a small scar on my neck), am relatively attractive, and I have been tolerating the Nivolumab infusions pretty well aside from some minor side effects. Of course I'm grateful for those things, but I definitely think people don't take my situation as seriously because them.

Thanks to anyone who had the patience to make it through this rambling post. I appreciate your time and wish you the best in your own journey fighting this insidious disease.

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JudiAU's picture
Replies 3
Last reply 12/3/2019 - 8:46am
Replies by: Bubbles, jbronicki, DoubleTT

Yesreesay I finished my fourth combo dose. I made it. I don’t have any ongoing side effects (knock on wood). After the second dose I was hospitalized with a very bad headache and very high fever (104, regularly reading 107 is was crazy). I was there for about 5 days. We finally figured out the cycle and 1,000 mg of Tylenol round the clock allowed me to be released. Three days later I stopped and was fine. I had a lot of tests of course and most tumors were stable but my brain met was enlarged. I had a third craniotomy which resulted in even more nerve damage to my face and some hearing loss, maybe temporary. And within two weeks had another combo immunotherapy infusion. Two weeks later radiation. One week later the last dose.

I had vision loss my first crainiotomy and then developed glaucoma from steroid overdose. The vision loss resolved and 2 years later the glaucoma has too. Yeah.

Next month I’ll have a PET scan and switch to a single dose. Hopefully I’ll see some progress on the scans. Hopefully I can get the hearing issue worked out.

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tedtell1's picture
Replies 1
Last reply 11/28/2019 - 10:10am
Replies by: Bubbles

Beloved MPIP family;
Happy Thanksgiving. Today is another day to give thanks. Some of you know my story, some do not. 8 years ago two weeks before Thanksgiving my first wife was diagnosed with breast cancer. Three and a half years later she passed away from complications associated with chemotherapy. Two years ago this Thanksgiving my second wife found a lump and was diagnosed. To this day she remains cancer free!
Three months after Kathren was diagnosed, I was diagnosed with stage IV melanoma. We actually shared an infusion room during one of my Opdivo treatments. While I continue to have side effects from my treatment, I am NED today and I am giving thanks for that. I give thanks for all of you as well and pray for your health and treatments. I also pray for the legions of caregivers who work so hard along with us. I pray as well for the caregivers, those who stand alongside. This beast is nasty, but will never beat us! Shout outs to Ed, Mike and especially to Bubbles (Celeste) for always being there for everybody.
Love you all,
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Bobman's picture
Replies 5
Last reply 12/3/2019 - 8:14pm

Happy Thanksgiving to one and all!
I just got home a little while ago from a very long day in hospital. Had two Wle's for my most recent lesions, a .3 on upper back, and a .5 on left upper arm. I must be slipping on my surveillance a tad, as those two broke my streak of eight insitu's in a row previously. Surgery was a breeze, and I feel fine, although deeply affected by the day.
Everything was sailing along smoothly right up until I was literally being wheeled into the OR, when a incoming trauma call went out over the hospital wide PA. I was quickly turned around , and back into waiting I went. It was immediately obvious whatever my surgeon was called to the E.R. for was serious. I got periodic updates from the nursing staff that it was a most serious trauma, and I would most likely be delayed for some time. Over the next couple of hours the pre- op waiting room went so quiet, and as just an observer, it was obvious everyone was having a strong emotional reaction. It was palpable. I watched and waited, and felt the room. After about three hours, I was heading back to the OR.
I had previously asked my surgeon about the possibility of not having to go under general anesthesia, as it is sometimes a bit troubling for me afterwards. He told me to bring it up with the anesthesiologist, which I did, and which she quickly replied with compassion, but firmness that they had had a rough go of it in there, which I knew they had. I felt the enormity of the emotion , to which I said without hesitation " knock me out".
Of what little I do know of the details of everyone working there today, I know enough to know they had a rough day, and not everyone made it home today. And yet they treated me after all that like I was the only one they were focused on. Their presence, and attention to me after all that, moves me more than I can say.
With love and gratitude to everyone at Hilo medical center today, and to all of you, Happy Thanksgiving. Love and hug the one's in your life.

Aloha,
Bob

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Nympha's picture
Replies 6
Last reply 11/29/2019 - 4:04am
Replies by: Nympha, Edwin, ed williams

Hello everybody,

I am going through the whole history of this forum, but I can't find the answer..

My farher got immunotherapy on 11/2018 after reocurrence of melanoma arround the scar.
He took 4 rounds of pembro with no answer.. He nearly died, combo of Taf / Mek saved his life..
After 9 months of Taf / Mek combo, tumors on his skin starting to grow.. Doctor offered us pembro again.
Do you think it is possible that Keytruda (pembro) can help? Even if he did not have any response on it in 2018?

Thank you much ❤️

Veronika

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sks2019's picture
Replies 2
Last reply 12/3/2019 - 12:16pm
Replies by: sks2019, Hukill

IPI/nivo users how long does it takes for the side effects to subside ? My mom had 3 infusions of ipi/nivo and after her third infusion she is been constantly having troubles vomiting, diarhea, extreme fatigue , nausea, GERD , rashes . She is on 30 mg prednisone and the nurse wants her to wean down. Its been 5 weeks and her fourth infusions was cancelled as they want her to feel better before giving fourth one. Her scans after the second infusion showed new lesions on the liver and the orginal liver lesions 4x the original size. She is feeling horrible with these symptoms and loosing her optimisim.
what has been your experience with the length of side effects ?? How long does these lasts ? I am concerned there isnt something brewing up and the ipi/nivo is working for her. She is down to mostly liquid diet.

thank you for listening.

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curious12's picture
Replies 1
Last reply 11/29/2019 - 11:18am
Replies by: JudiAU

Hi,

My son has had a small totally benign "freckle" on his nose, by the crease of his nostril, for a few years. He is 14. I have history of mm in-situ and he is seen yearly.
It was the most benign looking thing ever, but seemed to be a bit raised lately.. maybe the last month. I normally worry, but I attributed it to puberty and thought maybe it was just irritated or becoming an intradermal nevus.
Monday night he all of a sudden picked at it and it is essentially gone with a big zit looking thing in its place. White hard center, red inflamed skin and I don't even know if any pigment is left. He is going to derm today but I thought i would post to see if anyone had thoughts.

I don't know if mole became tad raised from him picking or he picked and irritated it, or if it was puberty or something bad going on in this spot (2mm light tan, completely benign looking) I also don't know if it's an infected mole, a zit under the mole or irritated mole or what. I don't know if derm will even know at this point and if he would biopsy or just see how it heals. I also wonder if picking at the mole can make it risky to morph into cancer.
It definitely didn't spontaneously become angry- he picked at it and caused the issue now, but I am worried what to do if the pigment doesn't grow back. Also don't want to rush to biopsy in case it's hard to read being so inflamed and it's on his face...

I have anxiety so I may be overthinking this!

Thanks and best wishes to all of you!!

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