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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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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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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Anonymous's picture
Replies 7
Last reply 9/20/2020 - 7:25pm

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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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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caman's picture
Replies 14
Last reply 9/17/2020 - 6:43pm

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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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

Lauren Johnston, MRF-Program Officer Rare Melanoma Subtypes

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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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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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MelanomaMike's picture
Replies 8
Last reply 9/16/2020 - 3:27pm

Hi ya'all, well, were postponing my trial til' we get my pains somewhat under control, if the "problem" wasnt in my ass area then it would be tolerable to endure the drive to the clinic, the sitting in the recliner off & on all day, the constant need to run to the toilet (my pains feel like i have to go #2 most the time when i dont have to), so, once again, my "ass" has literally taken over my life AGAIN, I swear to God i wanna chop my ass off & just be done with it, i mean comon'! Were going on like what?, 6 months of this, my ass this, my ass that, when folks ask me "Hay Mike how ya feeling?" Its always the same answer, "I feel pretty good except for my Ass Bob", & How bout' you?.....
So ya, thats where im at right now, this coming Wednesday ill see both Hamid and my surgeon Dr. Faries to talk about yes, you guessed it, my ass and the STRONG possibility  of getting a CT Guided "Nerve Block",  doesnt that sound good to anyone out there who is in extreme pain? Hell yeah it does!..well guys, enjoy your Non-Laborous few days ahead of ya's and i will try and do the same, Take care guys love ya's...

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

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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

Lauren Johnston, MRF-Program Officer Rare Melanoma Subtypes

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mrbill16323's picture
Replies 4
Last reply 9/15/2020 - 12:09am

Hello all. Thankful for this place we discovered today. I've been to my dermatologist just about every year as I am dark-skinned caucasian any have had many mole growths and age spots over the years, but none have been cancer. Three weeks ago I hit my hit getting out of a golf cart and my baseball cap buttom squished into the crown of my scalp and bled a lot. AFter a few days the scab did not look "normal" and still had bleeding. My wife and I jumped on it, and luckily was able to see a dermatologist (not my regular dr) quickly. He performed a crown shave biopsy. A week later got this test result: malignant melanoma, deep and peripheral margin positive. Histologic type: superficial spreading melanoma. Maxiumi Tumor (Breslow) Thickness : 2.05 mm. Macroscopic Satellite Nodule: not identified. Ulceration: present. Anatomic (Clark) Level: IV (melanoma invades reticular dermis. Mitotic Rate: 4 mitoses per mm2. Microsatillite(s): not identified. Lymphovascular invations: not identified. Neurotropism: not identified. Tumor-Infiltrating Lymphocytes: present, nonbrisk. Tumor Regiossion: Not identified. Margins: Peripheral Margins: involved by invasive melanoma. Deep Margin: involved by invasive melanoma. Pathologic Stage Classification (pTNM, AJCC 8th Edition): Primary Tumor (pT: pT3b)

Sadly, we saw the test result before any one from the hospital or the doctor responded to us because it was Labor Day weekend. Dermatologist Doctor apologized for that. On Tuesday Sept 8 he said I could go into surgery the in two days for removal, but rather he recommended that I wait for the hospital's Melanoma multi discipline board to meet Sept 16 to review my case and recommend treatment. So I agreed to that, not knowing or understanding much about the test results other than I'm in trouble. The doctor did not look over the rest of my body, just did the biopsy, and that does concern me. To be fair, my greatest concern was the rapidly growing (within days) ulcer on the top of my head! Doc says nurse coordiantor is supposed to call us to explain further what will happen next, but I called to talk to her and she said she has nothing to tell me and doctor will call me on Friday. This is concerning. I feel like I'm floating in limbo. Is this a normal course?

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dukester909's picture
Replies 21
Last reply 9/14/2020 - 7:54am

52yo male, good health other than this!

Biopsy from mole in belly button returned malignant melanoma in early August 2020. Specifics:
Breslow thickness: at least 0.9mm
Ulceration: Not identified
Mitotic rate: 0 per square mm
Margins: present at margins
Lymphovascular Invasion: Not identified
Neurotropism: Not Identified
Regression: Not identified
Pathologic stage: PT1b

2 weeks later I had a WLE surgery to remove belly button and melanoma, also a SLNB in groin area at same time, results:

A.Benign sentinel lymph node - negative for tumor
B. Malignant melanoma:
Brelsow depth: 2.2mm
Clark's level: IV
Host repsonse: brisk
Satellitosis: Absent
Vasucular space invasion: Absent
Perineural invasion: absent
Ulceration: Absent
Mitotic rate: 0 per square mm
Regression: Not identified
Surgical margins: Not involved

Had a full body PET scan 2 weeks later (last Wednesday) and results showed normal - no metastais, no cancer identified anywhere
So right now I am at stage IIb.

Met with oncologist a week ago today which was a blur for the most part but he set up checkups with him every 3 months for bloodwork and scans (probably CT or ultrasound - he wasn't clear on this -of abdominal regions every 6 months).

He also mentioned a clinical trial in a nearby city of an immunotherapy drug ( Opdivo, I think?) used in stage III and IV for a preventative treatment in I and II. I meet with the Dr. in charge of that at the end of the month to learn more.

Right now, only a week after meeting with oncologist I feel like I should be elated at results of SLNB and PET scan, but I oscillate day to day from joy to being totally scared. The last 6 weeks have been the most terrifying of my life. My wife has been a rock through this but I know she wants me to focus on each day and not on my fear of recurrence, which has kept me up more than a few nights the past week.

I already had checkups at a dermatologist since my early 20's twice a year but somehow this one got past him - he already did a biopsy on it in 2016 and it was all good then so I thought I never had to worry about it again - wrong! I had to point it out to him earlier in the summer when it was bothering me as it didn't feel right.

I am covered in moles and have had many biopsies taken before with no melanoma until this one, so I am scared scared scared. Should I be doing more? I thought about going to 2 different dermatologists. I don't know how to function at times during the day. I know I am looking for some optimistic assessment or statistic but I know nothing is a guarantee. I just wanted to see what info the folks on this forum can provide!

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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jjk17's picture
Replies 14
Last reply 9/14/2020 - 3:40am

I am possibly going to start some treatment for my Stage III B melanoma. Doctor highly advises Nivolumab...Wanting some input from anyone who may have or is on this! We need to make a decision soon. The next step is to contact insurance ect. I am absolutely dreading that part.

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Bubbles's picture
Replies 1
Last reply 9/12/2020 - 12:09pm
Replies by: Julie in SoCal

I've been sending you all the good vibes, wishes and hugs I possibly could all week, dear Julie!!! Hope your MRI wasn't too dreadful and the doc meeting was productive on Tuesday. Love and warm wishes being sent your way every minute!!! love, les

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