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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Daisy2018's picture
Replies 7
Last reply 9/22/2020 - 5:55pm

Hello everybody,
I had an 4 lymph nodes removed as well as cut and reposition of sartorius muscle in the groin area. I like how is sounds, Greek or something. Anyway 2 weeks and going on 3rd I still have a drain. It drains quite a bit. The leg swells up a lot. It fells numb like a tree trunk. I used to have pretty legs. How long does it take to recover? I feel it will go on forever. I want start treatment sooner than later and can’t until all healed up.
What did you guys fo to heal faster? Thanks a lot!

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StevieDeepD's picture
Replies 1
Last reply 9/22/2020 - 10:19am
Replies by: Bubbles

My melanoma was discovered by my primary doctor during an exam for chest discomfort. I had a biopsy done on March 12, when the doctor removed the mole It was determined to be a melanoma.. THEN...COVID-19 hit, and after waiting, I ended up having a triple bypass surgery on May 12 (it's not been my year, LOL). Tomorrow, Sep. 21, I'm finally having a lymphadenectomy and skin graft. as a follow up to the original removal/biopsy. My local hospital is unable to do the procedure due to the placement of my lymph nodes. I'm not nervous, but I am AM anxious for answers, as I really don't know much about my diagnosis. There are some spots on my lungs that we're right now PRESUMING are unrelated due to the fact they haven't changed/grown. Grateful I've found this site, which I will use to help me along in the process!

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maryb-z's picture
Replies 3
Last reply 9/21/2020 - 8:46pm
Replies by: Juan Arias, Daisy2018

I am completing Opdivo on October 23rd. My melanoma specialist feels it's safe for me to return to the classroom. I'm concerned because cases are on the rise in WI and a neighboring district had a teacher die from Covid. Wondering if I should take FMLA. Right now they have allowed me to teach from home but made it clear it was a temporary solution. IDK.

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SOLE's picture
Replies 12
Last reply 9/24/2020 - 4:20pm

Dear all good people reading this board,

My thoughts go out to all of you. I have become some kind of an «old timer» here since my diagnosis. I still do read this board pretty regularly and chime in when I can be of help.

I long to know how Maureen's husband is doing or Jenn or Hawaii Bob who had tumour very similar to mine about 10 years ago now.

This board is our comfort place. Thanks to everyone at MRF and the «specialists» that have contributed more than I can really appeciate fully (Bubbles, Ed and many others, forgive me for not being able to mention here)

At the beginning of my journey in July 2016 I promise myself that I would share my progress until I did from this disease. That was expected with 50% odds at 5 years.

Further analysis on my case, better understanding of recurrence odds (AJCC 8) and life-saving treatments in so many forms now have forever moved the needle to combat this awful disease. I am a fervent believer of manipulating the microbiome alongside immunotherapy treatments to move the needle even more in the coming months and years.

My heart goes out to all of you. This is scary beyond comprehension for almost anyone not living/having lived with a cancer diagnosis. One day, it's going to be seen like a flu. Hopefully not the COVID 19 type...

So, I'm simply reporting 4 year NED after initial surgery to my right foot sole with a real bad ulcerated tumour.

It can be done. It is done. Every day. At any stage. Let's not loose this saving grace board ever.

We are all a beacon to each other.

My loving thoughts to all of you.

M

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BillB's picture
Replies 6
Last reply 9/24/2020 - 2:46am

Hi, I still visit every day and I'm continually amazed by the support and caring provided to and by members of the forum. My thoughts and prayers are continually with with everyone! I reached the 3 year NED mark last week and reluctantly am moving to scans every 6 months. I had my last Keytruda treatment on 12/4/19 (2 years and 5 months, NED at 9 week scan, I wanted to make sure to get it all and didn't really have deal with side effects) and the minor side effects of fatigue and joint pain have reduced significantly.
Bye for now and best wishes to everyone. Keep fighting!
Bill

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sks2019's picture
Replies 9
Last reply 9/24/2020 - 1:20am

Update on mom : She is in ICU for last 7 days. yesterday was the first day she opened her eyes little bit when i called out. She was admitted last Monday as she was having diffuclty breathing and was confused. We took her to hospital to find out her kidneys have shut down
Last Monday I was told not to opt for ventilator and let her go. I coudnt let her go. I insisted on getting her in ventilator. Four hours later I was told her kidneys have shut down and I should let her go. Again I insisted on getting her in dialysis. I was told she is paralyzed. Tuesday she was responding to my calls and moving her legs and feet. Wednesday- breathing without a ventilator and they are planning to take her off the dialysis. It has been very hard to be with her in the ER listening to the docs that she is passing away and I am making her suffer. I wonder they teach empathy in the medical school. The same doc who told me all this comes back and tells me this is just temporary since she has cancer in her bones she will be back to this condition in few months. I wanted to ask how many folks here had melanoma in bones and other organs but are still here ? I know fighting with this disease is not easy and I have lost so much personally and professionally to care for my mom but I would still want her to get well and be with me as long as possible. I just believe if it’s time God will take her but I will fight for her until I can. Please share your story if you have fought it through stage 4 and still here.

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sing123's picture
Replies 9
Last reply 9/24/2020 - 9:54pm

Hi all. I have had just one infusion of the combo treatment so far and have a backache unrelated to a side effect. Which is better for me to take, Tylenol or ibuprofen for the backache? I seem to recall some posts about staying away from one of these painkillers or other while on Immunotherapy.

Thanks!

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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mrbill16323's picture
Replies 15
Last reply 9/28/2020 - 12:37pm

Glad to know that tomorrow is the day I will have this nodular melanoma removed from the crown of my head. Since it was diagnosed the 2nd week of September, it has continued to increase in size. Although my CT scan showed so far it is localized, my surgeon Dr. Vivan Wu plans to conduct a SLNB as well during the removal to check again. She believes I will need immunotherapy, but she advised one step at a time. So this week surgery to remove, and next week plastic surgery which will be a pinwheel approach. I'm sure I'll look like Frankenstein, just in time for Halloween. My plastic surgeon Dr. Garcia-Rodriguez advised I may see a lift in my eyebrows and some slightening of my forehead wrinkles. I think I deserve that much given this cancer turd that I now have! She also said I should expect my head to feel like my hair has been pulled back in a hard too-tight ponytail. Tylenol for that I guess.

Also, received confirmation that a worrisome-looking spot on my scalp tested negative for cancer.. Very relieved about that since the one nodule I now have is quarter size in height and width and looks pretty scary. Bleeding nearly every day.

Docs say I can wait for a full body check over until after this next few weeks of surgery and post op work.

Peace and good outcomes to all. I'll post more after this.

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poppymac's picture
Replies 2
Last reply 10/1/2020 - 3:46am
Replies by: poppymac, Bubbles

hi,everyone I live in uk and had SRS on a brain met in dec 2018
it was left frontal lobe and last just over 20 minutes
no treatment since and clear scans but I've been told by taxi licencing authority that I can never hold a taxi licence again

fergal

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dukester909's picture
Replies 1
Last reply 9/24/2020 - 9:19pm
Replies by: Mark_DC

Hi again, I posted once before ( https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma... ) but basically a 2.2mm deep mel in my belly button. I had WLE surgery to remove umbilicus and SLNB showed negative as did a follow up full body PET scan.

For those who remember, I was asking earlier about a possible clinical trial option for stage 2 and as it turned out when we went to find out about it the trial had closed earlier in the month, so that was never an option anyway. This was the trial if anyone was interested: https://clinicaltrials.gov/ct2/show/NCT03553836?cond=Melanoma%2C+Stage+I...

At the meeting with the new oncologist about the possible clinical trial, I brought up the question of whether my original WLE surgery margins were sufficient based on this page:
https://www.aimatmelanoma.org/how-melanoma-is-treated/surgery/
which has this chart:
Thickness (Breslow Depth) of Melanoma Determines the Size of the Margin

Tumor Thickness Surgical Margin

In Situ 0.5-0.1 cm
Less than or equal to 1 mm 1.0 cm
Greater than 1.0mm to 2.0 mm 1.0-2.0 cm
Greater than 2.0 to 4.0 mm 2.0 cm

Mine was 2.2mm, and no mitosis btw. However in reading the path report from my surgery it says "Surgical margins are free by at least 1.0 cm", which sounds to me like not wide enough?. I asked my surgeon about this and the reply I got was : "additional surgery for a wider margin was likely going to require a much more extensive surgery that would not be worth the benefit since margins were already at least 1 cm. The NCCN guidelines are written with an asterisk that they may be modified to accommodate individual anatomic or functional considerations".

So the new oncologist I met with about the clinical trial asked his surgical oncologist about this and he said I could just watch the area for local recurrence (I am going every 3 months to oncologist), or to consider a wider resection if this is going to be hanging over my head worrying about a local recurrence; IOW if I have a local recurrence, will I wish I had had the secondary resection.?

I am probably going to meet with the surgical oncologist either way to hear what he says about a secondary but I would like to know what the thoughts are here. Sounds like my original surgeon thought a much wider excision there (umbilicus) was going to be quite a big deal. Unfortunately I didn't know any of this before the original surgery and couldn't ask these questions then.

By the way, in looking up clinical trials for stage 2 I came across this trial, which seems to be asking this very question of whether 2cm margin is worthwhile:
https://clinicaltrials.gov/ct2/show/NCT03860883?cond=Melanoma%2C+Stage+I...

I thought I could move on to just looking forward to not thinking about all this so much after the trial ended up being closed but now I am back to being dazed and confused again....

Dukester

Stage IIb diag 8/20 Initial biopsy: Breslow: 0.9mm Ulceration: Present // SLNB - negative for tumor WLE Surgery: Brelsow depth: 2.2mm Ulceration: Absent Mitotic rate: 0 per square mm Surgical margins: Not involved // Full body PET: Normal

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boatski's picture
Replies 4
Last reply 9/25/2020 - 9:42pm
Replies by: Daisy2018, boatski, Mark_DC

So I haven't posted in awhile as I've been avoiding thinking too much. I had a modular 4mm high mitotic rate ulcerated melanoma removed from my ear in March. (Staged 2b with negative snlb). Given the crazy risk category I looked for clinical trials. The only one I qualified for due to Covid shutting down different ones was a vaccine at UVA.

I received an MRI and several CT scans with contrast in late August. Last week I woke up with a sore neck/shoulder. Seemed very muscular as when I moved it hurt. I've been working with it and it is getting less sore. However, I feel almost constantly achey in my shoulder even when I am not moving. Icing/heat, advil help some but not enough to stop all the pain. I've reported this but waiting on what's next. Assuming another CT or X-ray, though I'm scheduled for one in November and just had one in September.

I'm hyper paranoid and seem to think everything is melanoma. Mostly wanted to vent but interested in any other insights. I hear bone mets are fairly rare without other metastasis and I currently have no other symptoms.

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Fortysomething's picture
Replies 6
Last reply 9/28/2020 - 11:14am

Hi forum
Well few days away from my slnb ,so anxiety kicking in a little ,doesn’t help I have to self isolate 72 hours before.
was wondering those that have had slnb how painful was it and because I do a physical job(when u have one) ,how long would it take to heal. Ask this question as I’m trying to look for a job as covid got me laid off. Trying to workout when i will be able to start o be if I found one.

Regards

Andrew

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youngann's picture
Replies 6
Last reply 9/30/2020 - 3:12pm

3 days ago, I learned that I have 'graduated' to stage IV with lung Mets. My primary tumor was Braf+ and Pdl1+, does this mean that the Mets will also have those mutations?

Also, I must confess to not keeping up on what the latest treatments are so, in the hopes that someone can tell me, what is the preferred stage IV treatment plan?

Thank you,
Ann

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tkoss's picture
Replies 5
Last reply 9/30/2020 - 7:07am

death

my immo cost $400,000 or more start to finish.

with the death of ACA comes my inability to get insurance at any price.

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Daisy2018's picture
Replies 6
Last reply 9/30/2020 - 9:51pm

Hello my fellow melanoma fighters and families.
I was thinking lately about future. One of the pressing things on my list is my car. My 16 years old Toyota Sienna is getting too old to the point of being unsafe. I m becoming a regular at the car shop every week for a last month throwing more and more in it. Reading car reviews. People are praising cars for looking forward driving them for next 10 years.
I ask myself. Do I have another 10 years? Would I be able to work? Should I just get some reliable little car I would be able to drive to my treatments? Should I get the car I always dreamed of since I may not get to my retirement age where people get the car they always wanted. I have some retirement money saved up for a rainy day. Is it a day to use it? At least I can enjoy my ride to the cancer treatment place.
There are so many uncertainties. I am a planner. I have no control over what is going to happen no matter how much will power I will put in it. I m stage 3c now. Still recovering from lymph nodes removal and it’s slow and doesn’t look like I can have the drain out after a whole month of having it in. The incision looks weird everyday. In the morning it looks good. In the evening it looks all red. Seeing surgeon in 2 days.
I m greatfull to be able to work from my couch and had I had to work on my feet or even from the office I would have had to take FMLA last month. Looking forward of getting Keytruda for next year. How would it work out, side effects? Getting anxious and uncertain.
I always thought I can take care of myself no matter what as long as I m healthy. It looks I have to live day by day. I wish a had crystal ball to know what is the plan.

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