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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sing123's picture
Replies 4
Last reply 9/22/2020 - 10:26pm

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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sks2019's picture
Replies 5
Last reply 9/22/2020 - 9:46pm

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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BillB's picture
Replies 4
Last reply 9/23/2020 - 8:10am
Replies by: BillB, Summer S., Bubbles

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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SOLE's picture
Replies 4
Last reply 9/22/2020 - 8:50pm

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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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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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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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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MelanomaMike's picture
Replies 12
Last reply 9/22/2020 - 2:45pm

Hi family, i hope you all are well and stable im here at Cedars Sinai, the pain i was having in my ass as we already knew, is fact Melanoma and is growing into nerves in my rectal area! Aaaaaaggghhh!!! The pain was to much i tapped out and here i am. They ran test did another CT scan and the tumors are growing fast as hell as well as the 2 new tumors on my liver, comparing August CT scan to Mondays scan ill get you all numbers later, i can barely type and read, msinly because my new buddy named PCA has me doped up in Hydromorpone Diludad i can press the trigger every 15 minutes, theres limits but forget the time sequence blah blah..My clinical trial has been paused, i never started it remember? I didnt make the appt to sign papers, so, Dr. Hamid has new plan, do a Nerve Block and low dose radiation to the tumors in my rectum for relief, more long term relief that way we can possibly look at some well tolerated "chemo" types, Cisplatin etc. We need to act faster then before i guess, this latest CT said all he needed to see. I saw the radiation folks, sounds doable and i do the Nerve block tomorrow at 11am and another CT scan for the radiation folks so they can do what they called a "body layout" of me lol...
Well guys i gotta go, i can barely see i love you and ill be back to give you the latest....Melanoma Mike

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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Replies by: Summer S., Johnjk04, Mark_DC, AMcReader, Anonymous

All fellow warriors,
I had 4 NIVO infusions, with no side effects other than some tiredness. After my 3 month scan, nodal tumors in my neck had decreased in size, some went away and all were no longer active in the PET scan. But I developed several MM nodules in my lungs, again that we're not active in the PET, and a 2.5 CM liver tumor developed. Decision was made to put me on IPI/NIVO combo. Now 7 days post my first infusion, I have developed a measles like rash over my upper body. Front and back. I am hoping this is a good sign. As most of you who know me, I am looking for anything positive. I am kinda of excited to actually have a side effect. Is that crazy? Makes me think, something is happening, right or wrong. I would appreciate any experience all of you warriors have had.

Thanks,
Trent

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AMcReader's picture
Replies 5
Last reply 9/18/2020 - 1:27pm

On Tuesday of this week, I started the first part of my new treatment plan by taking Vem and Cobi and WOW what a difference that has made!!!!!!!! In less than 24 hours, I was FINALLY able to eat without pain again — something that has been beyond uncomfortable for me for the past 2 months while I dealt with these lesions in my peritoneum. I ate three full meals yesterday and will again today and they all felt normal, amazing, PERFECT. I don’t want to make it sound too grand, but it was a HUGE relief and made me realize how much pain I was walking around with and what a weight that has been.

Now, here’s hoping that this fast relief and the Atuzo immunotherapy that I’ll be complementing it with soon will bring long and lasting success!!

Always happy to hear from those who were part of this trial and those who have had long-term success on the inhibitors.

Sending hugs to all of you fighting your own battles today. I know it can get dark sometimes.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Register today and join the MRF on Thursday, September 24, 2020 at 1:00 pm ET for an educational webinar on Project Facilitate, an Oncology Center of Excellence pilot program to assist oncology healthcare providers in requesting access to investigational therapies for patients with cancer.

This webinar is for oncology healthcare providers, melanoma patients and/or caregivers who are interested in expanded access to investigational oncological treatment opportunities. To learn more and register for this webinar, follow this link: https://buff.ly/33zALeL

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2020 - 3:53pm
Replies by: Mark_DC, Anonymous, Linda5

Dear Fighters,

STAGE 4 from Dec-2019. After 10 months of TAF/MEK treatment (Targeted Therapy) with good results, due to some progression in brain, I must to change to Pembro (Immunotherapy). I have a chance to get in clinical trial with Pembio + Lenvatinib. In this trial I have 50% chance of take Lenvatinib drug.

Is there someone participating in this clinical trial? Can you share me your experience?
I just see one post talking about Lenva, published last year.

Kind reagards,

JayA

JAH

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Daisy2018's picture
Replies 7
Last reply 9/22/2020 - 3:08pm

Hello my fellow melanoma bravest. I have been reading here for a while and this is the first post. You are an amazing group of brave people which gives newbies a lot of courage to keep fighting. I used to think that stage 4 in cancer is you have to make your funeral arrangements and I see many people living decent quality of life still. I was diagnosed with stage 1b in February 2020, had a surgery and was clear. Last month I had a scan and it followed with the surgery with stage 3c.
I am still recovering with a drain in my leg and lots of discomfort. Not taking any pain meds though.
Couple question if I may?!
One oncologist had offered targeted therapy since I am BRAF positive and another one offered immunotherapy. I feel I have more chance of remission with immunotherapy. What is the opinion here?
Second question Is about post op cares. Did you use ice? What else did you do to recover faster? It’s getting quite annoying hopping on one leg.
Thanks a lot!

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Summer S.'s picture
Replies 7
Last reply 9/18/2020 - 1:41pm

Hi everybody,

My mom has been stage IV since 2018. We have just unlocked a new melanoma level, brain mets, which happened alongside with drug-induced neuropathy

Fast forward, radiotherapy, neuropathy treatment (minor improvement), drug vacation and all the weird symptoms that comes and goes due to all the new fuzz happening in the brain. It has been a roller coaster.

With very very few options left now, we are re-initiating keytruda, as a single agent, tomorrow.

I am super scared and not knowing what to expect, we are also all super exhausted with everything that happened in the past 2 months.

Please keep my mom in your thoughts and prayers, it is all much needed.

Love you all,
S.

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ljohnston's picture
Replies 1
Last reply 9/16/2020 - 1:15am
Replies by: SABKLYN

The MRF is currently asking patients to participate in the following sessions with our partner OncoSec:

1) SITC: OncoSec Session
• Patient to attend Face Book Live Session and discuss patient topics for Wed. 9/7 at 4pmET

Each Session will be 30min in length, and we will be providing them all of the relevant information before each session.
For questions and to sign up, please contact Lorrie at lmiley@melanoma.org

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