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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MelanomaMike's picture
Replies 7
Last reply 9/18/2020 - 11:36pm

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: 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 4
Last reply 9/19/2020 - 8:28am
Replies by: Anonymous, Linda5, Mark_DC

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 5
Last reply 9/18/2020 - 12:15am

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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KellyCDM's picture
Replies 6
Last reply 9/16/2020 - 8:49pm

Hi everyone. I feel funny writing in about this but I just had a WLE and SLNB last Thursday. It is Monday. I am healing quite well I think but I have terrible nausea every day and even feeling depressed. I thought I’d be so happy once the surgery was over. Has anyone ever had this experience? I should feel fortunate all went well but instead I feel awful. Not on any pain meds and in fact don’t have much pain at the sites. Returning to work after tomorrow. Just thought you all are the best to ask. Hope you all are doing alright. -Kelly

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T.C.'s picture
Replies 3
Last reply 9/17/2020 - 2:28pm
Replies by: Juan Arias, Summer S.

Hi, I have been taking the targeted therapy drugs Tafinlar and Mekonist for 3+ months now and had to stop twice so far to let my body recover from the side effects of nausea, chills, fever aches, headaches, etc. After a few days I start the regiment again of 2 pills in the am and 3 at night. Appears 6 weeks of treatment and body needs a break.
Does anyone have experience with these drugs and can recommend a way to combat the side effects. A few of my friends have recommended trying marijuana to address the side effects. I live in Florida and they do allow medical marijuana use. Anyone have experience with the use of cannabis to combat the side effects.

Background: July 2015 found strange spot on back. Had it checked 2 weeks later, turned out to melanoma. Surgery week later in NH and Mass., had already metastasized to lymph nodes left side. Very small amounts cells found in lymph nodes. Diagnosed as stage 3A.
Just prior to melanoma find had purchased a home in Florida and sold home in New Hampshire. Timing not the best.

July 2019 local Florida oncologist told me I was good to go; no further PTSCANs needed. Last one was in December 2018.
I insisted on another PTSCAN. Doc scheduled it for December 2019. Week before Christmas Doc advised possible metastasized melanoma in the small bowel. Holidays were stressful. Jan 2nd started further testing. Ultrasound, endoscopy, camera endoscopy, MRI. Results inconclusive. Doc then said was probably not melanoma but maybe an infection.
In the meantime I had contacted Moffitt Cancer Center in Tampa FL. again for followup and new primary care. Petscan in March revealed area had grown and was most likely melanoma. Surgery first week of April 2020 small bowel resection. Removed around a foot of intestines. Positive for melanoma.
Graduated to stage IVC.
That is the reason for the targeted chemo/immune targeted therapy drugs. Melanoma is BRAF V600E strain which should respond well to the treatment.
Fingers crossed X........................

TC

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tkoss's picture
Replies 2
Last reply 9/13/2020 - 11:29pm
Replies by: tkoss, Anonymous

as i read MPIP BB and refer to AIM and other melanoma and cancer websites and blogs i got to thinking.

there is no reference material in my docs offices. no pamphlets ,no handouts, no website recomendations , no nothing for resources. This is true of my hospital based infusion clinic nor the big 400 Doc Onc practice I was first referred too.

in the initial stages i had no info and could not really ask any intelligent questions of my docs. It was only after SLNB that i realized i needed more info from other sources.

there is more literature on Weed Eaters at the Home Depot than cancer info in my Onc's office.

I found AIM and MPIP on my own. One onc did get me a photocopay of the NCCM guideline pertaining to my stage of cancer. 1 sheet. From then on it was' 'standard of care' and 'trust us:"

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Anonymous's picture
Replies 6
Last reply 9/18/2020 - 1:58pm

Test results on 9/1/2020 report malignant melenoma, and I posted those results in my first post Newly Diagnosed. Met with Surgeon, Dr. Vivian Wu Sept 12, with Henry Ford Hospital. Because of the placement of the malignant melanoma at the crown of my head and the expected depth (she's not sure as initial test was not a punch) she expects that in the wide excision she will have to go down to my skull. She's recommending to the hospital's melanoma board that I get a Pet Scan prior to surgery to help guide her. She says although the Pet Scan doesn't point out specific cancer, she can see if there are lymph nodes flaring up particularly in the neck area. She couldn't identify any swelling in her hand examination. So we are waiting to hear from the board. She ordered a sentinel lymph node test the day of surgery for possible lymph node removal during the surgery. She said if the lymph node activity is aggressive, she might recommend neck excision but that's the worst case scenario.

She sees another area on my scalp she thinks may need to be addressed in this same surgery, but a smaller spot.

She advised she wants to leave the scalp surgical wound open until the test results come back to be sure she got all the cancer, explaining that the margins test for malignant melanoma doesn't happen like in Mohs surgery where they can test the margins right during the surgery. She said there are unique dyes and testing done specfically for this type of cancer in this satage. That's kind of freaky thinking about that. She is talking with the plastic surgeon as to approach to closure. So I assume it will be some kind of flap or taking skin from some other area. I am totally unclear on that next step but a separate surgery for reconstruction.

She explained immunotherapy to me and said I should mentally prepare myself for that possibility.

Doctor also said at this point, going to a specialized cancer center (for us, U of M) is not necessary, as the main difference is their range and large number of trial tests. She assured us she would tell us in future if she recommended we go to a specialized center. She is also talking with my current dermatologist to see if he wants to manage my melanoma. I assume I will also be assigned an oncologist, waiting to learn more about that. It's all very confusing right now. My PC is also in this hospital system, but he told me at this point I'm in the hands of the experts.

I have a possibility of getting the surgery this week, or waiting if I can't get all the scans and prep tests done. Latest getting surgery is September 25. Any advise or words of wisdom are very much appreciated. I plan to read through the links others have posted to help get educated on this disease. Sadly we lost a very close friend one year ago - someone in his mid 50's - to this disease but he had no external identifiers. . It has progressed to multiple areas of his body and from diagnosis to death he had 3 months of illness. He was getting physical therapy through workman's comp because he had a lot of pain in his body and doc thought it was problems from his job. I hope I've caught this early enough to have a chance at overcoming it. I had a light brown spot on my head that the dermatologist one year ago told me was a cosmetic age spot. In late August, 2020, I bumped my head really hard right on that spot getting out of a golf cart and the scab was very irregular and grew into a small tumor in a matter of 7 days. It may be that the golf card saved my life! Thanks for listening.

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Julie in SoCal's picture
Replies 7
Last reply 9/17/2020 - 4:43pm

Greetings! Melahomies!

After talking with the Brain Trust at St. John's, I have a plan! It is to 1) continue the ipi /nivo immunotherapy combo I've been on every other week and then 2) start chemo in the brain next week. The thinking is that the immunotherapy is slow, but it has worked in the past and hopefully this will keep the mets out of my lungs and other parts of my body. It can work in the brain (yes, please) but it is slow, and slow is not so good for the brain, so on Wed I'll have a port put in my head and we'll start chemo to the brain and spine. Oh and the port placement is an outpatient brain surgery (Yeeeha!)

I'm slowly wrapping my head around this, and making changes to how I'll live my life. I've put in for medical leave from my job (and I loved my job) but people and relationships are more important now.

Just wanted to catch you all up.

Shalom,
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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caman's picture
Replies 13
Last reply 9/17/2020 - 6:35pm

Hi everyone, after 4 months on immunotherapy I finally got to remove the lymph node for the biopsy. I'm happy to report I got a complete response. Pretty amazing!!.. Just wondering how much longer should I stay on the drug. Anyone have any experience with this or have some knowledge on this topic? Thank you!

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tkoss's picture
Replies 7
Last reply 9/11/2020 - 7:56pm
Replies by: Bubbles, ed williams, tkoss

ed, bubbles, others with tremendous knowledge and experience, i ask this question again. the last time i asked the responses were meager.

what is the issue of Immo and covid?
my docs can't or won't give me an answer. the web says little.

does taking Nivo make me more likely to die from Covid whilst doing infusions? After my last infusion, how long is my immune system supercharged so that i remain at high risk of death from Covid.

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