MPIP: Melanoma Patients Information Page

Register Login Help

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.

Expand/ Collapse Topic
 
Replies By
View Topic
Julie in SoCal's picture
Replies 9
Last reply 7/23/2020 - 10:38am

Good Morning, Friends!

I've been back from Sheri & Julie's Awesome Adventure 2020 for a few weeks now. But I went straight into Chemo (talk about a rough way to end a historically amazing trip).

So here are the stats:

Miles: 2800
Flat tires: 1 on Chubbs the tiny trailer coming home
How many times people said "Sweet!" or "Cute" or somehow praised Chubbs.:36.
Ave MPG: 26.7
Camping mishaps: 4 Forgot the tent poles, forgot my wallet, had to fix the stove, set up the portapotty on an incline- I couldn't get up without spilling it's contents all down the floor of the tent. Yes Sheri came to my rescue, but not before a good laugh or two.
Friends we meet along the way: 10 (priceless)
Animals we saw: Bison, white tail deer, moose, horses, blue heron in a nest with two (ugly) chicks, squirrels, chipmunk, prairie dogs and a bazillion mosquitoes. We didn't see any bears, but we know they were around. We also didn't see any wolves or bald eagles :-(. We will have to go back!
Times we looked up, saw something amazing and said "WOW!": Lost count!

Truly it was amazing if it wasn't the beauty surrounding us, it was the fun and fellowship of the friends we were with. Often it was both! My heart is full and I am so grateful for my friends -- especially Sheri. I couldn't have done it without her. I knew the altitude would be hard 5-8,000' but I didn't realize how hard. If I had to climb any incline I was toast. And everything is on an incline. Every breath was a reminder that I have stage 4 lung cancer as I ran into one limitation after another and needed help. But my friends were there with me, seeing my struggle and helping me. I really have no words to describe how this makes me feel- the closest thing I can think of is that this is grace. Thank you friends for extending grace to me.

If you're interested: Here are a few pix from the trip: https://drive.google.com/drive/folders/1AcDPYPeLLFOEhEJOr9RS2N4obplCaO-R...

Ok this is plenty long, so I'll quit for now.

Wishing you all peace!
Julie

Login or register to post replies.

boatski's picture
Replies 4
Last reply 7/15/2020 - 1:03pm

Hi all,

I'm still in the relatively early stages of watching out for recurrence. In march I had a WLE and SNLB (negative) for a 2b melanoma on my ear. I'm vigilant about watching for signs of melanoma but am still so confused. I've been to numerous doctors and oncologists. I'm trying to learn what to watch for and what to worry about. They basically all say that anything can be a sign of melanoma, which is not super comforting. I've been worrying over red spots as now I am getting them due to summer and covering my skin more when I exercise. I have a derm appointment next week but was looking to get some early thoughts. I have a newer red mark below my collar bone near the center of my chest from late last week that is very slightly raised - much smaller than a grain of rice. It seems to react to hydrocortisone cream and becomes less red until I irritate it exercising. I had another bump like it somewhat near by that I can still kind of see but is no longer red and has drastically shrunk in size.

I'm going to ask the derm next week but I was wondering
1. would melanoma react to hydrocortisone and become less red?
2. could in-transit or distant metastasis become smaller?
3. is raised the big cue for melanoma recurrence? It's tough because my skin is so sensitive that i get lots of red irritation marks that are not really raised.

Thanks all.

Login or register to post replies.

chipgoodhue's picture
Replies 6
Last reply 7/23/2020 - 9:29am
Replies by: MarkR, chipgoodhue, Bubbles

Anyone know someone who was enrolled in the LN-144 Tils trial? My wife has preliminary acceptance into the LN-145 trial, god bless, and we are curious to hear anyone's else's experience in LN-144. The results look very promising, though the trial processs itself looks quite challenging.

Thanks in advance for any help.

Chip

Login or register to post replies.

MelanomaMike's picture
Replies 6
Last reply 7/15/2020 - 4:54pm
Replies by: MarkR, ed williams, Anonymous, gopher38

TIL PROTOCOL IOVANCE C-144-01 - Phase 2 Study of Cell Transfer Therapy Using Autologous Tumor Infiltrating Lymphocytes (LN-144) Followed by IL-2 for Treatment of Metastatic Melanoma [NCT02360579]
"Please go to TheAngelesClinic.com and read this, it sounds like they may take you Mark, it reads brain mets are under exclusions but then says the following":
Patients with symptomatic and/or untreated brain metastases (of any size and any number)
Patients with definitively treated brain metastases may be considered for Enrollment, and must be stable for ≥ 14 days prior to beginning the NMA LD preconditioning regimen.
"I didnt catch if your BRAF positive but heres what it says"....
Patients who have been shown to be BRAF mutation positive (V600), but have not received prior systemic therapy with a BRAF inhibitor alone or a BRAF inhibitor in combination with a MEK inhibitor
I hope you can get over here to the US no matter what state, Texas has great doctors to!, just as world renowned as my doc Dr.Omid Hamid!

Login or register to post replies.

johntmcdonnell's picture
Replies 1
Last reply 7/14/2020 - 10:06am
Replies by: Gene_S

Eight tumors completely wiped out by Yervoy. Still in remission nearly a year later. First course of Opdivo prior to Yervoy produced vitiligo. on arms, hands, and legs. Yervoy caused white eyebrows and lashes. I started getting what looked like age/liver spots on hands, arms, and legs about 8 months ago. These spots are now so prevalent that they cover everything but my trunk and face/neck so completely that I look like a mutated giraffe. Both oncologist and dermatologist think that this is re pigmentation of previous vitiligo areas. Personally, I think that they have no idea what it is. Has anyone heard of this condition (or experienced it)? Both docs agree that the spots, which now number in the thousands (no exaggeration and many areas have merged into large light brown patches of skin) aren't dangerous. While certainly grateful to still be in remission, i certainly wouldn't mind my skin going back to "normal". Thanks for feedback.

Login or register to post replies.

maryb-z's picture
Replies 7
Last reply 7/28/2020 - 6:28pm

My district is returning to face-to-face instruction in September. I asked my nurse practitioner if there were additional precautions I should take as I am currently on Opdivo as well as low dose prednisone daily. She advised the same precautions as our health department suggests. I'm a bit anxious to say the least. I'm 52 years old and will be in contact with many students daily as I am a specialist teacher. Any thoughts? TIA

No One Fights Alone

Login or register to post replies.

Shelby - MRF's picture
Replies 2
Last reply 7/20/2020 - 10:55am

Dear MPIP Community,

Our partners at OncoSec are looking for a cutaneous melanoma patient or caregiver to share their story as part of a virtual media tour. At this time, they are looking for a patient and caregiver who:

  1. lives in the Northeast area of the U.S.
  2. has participated in a clinical trial

If this opportunity is of interest to you, please contact me at smoneer@melanoma.org so that I may share your contact information with the OncoSec team. Thank you!

All the best,

Shelby - MRF

Login or register to post replies.

Mismich76's picture
Replies 4
Last reply 7/16/2020 - 4:21pm
Replies by: lbd, AmyM, sandyd77, Bubbles

Anyone on or has been on Mektovi / Braftovi? How did it work and any side effects you can share with me. I will start both on Monday, June 13, 2020. Thanks

misty crocker

Login or register to post replies.

MarkR's picture
Replies 13
Last reply 7/26/2020 - 10:18pm

Hi All
Is anyone aware of any Us facilities that can offer TILS therapy either through trial or privately funded. The option in the UK has stopped private paying TILS as they gear up for trials so looking outside the UK at Israel and maybe US. If anyone has paid for TILS in the US I would be grateful for an idea of costs please.
Thanks
Mark

Login or register to post replies.

BRR's picture
Replies 13
Last reply 7/8/2020 - 6:50pm

Hello,

My dear father had VAT surgery in March ( 3 melanoma mets) and no other treatment, only CT for 3 m( his history is on my profile- from stage 2c to 4).
CT 11.06 confirmed new 5 new metastasis in the hilar part of his left lung. Next week he starts OPDIVO therapy.
How this therapy received? What are side efect?
He is 71 years old and in good health.
What are the experiences with this therapy?

I am so sorry for my bad english.
Thanks a lot to everybody.

Login or register to post replies.

Jubes's picture
Replies 11
Last reply 7/15/2020 - 8:19pm

Hi All

I haven’t posted for a while., but I think of you all
often, especially Les, and wonder if she ever made it to Italy...

I am still NED since my lower lung lobe resection in Nov 2016

I am taking Humira every three weeks for arthritic side effects and it is working just fine

I hope you are all hanging in there. We live in amazing times with fabulous health professionals.... at least those of us lucky enough to live in first world countries

I hope the Covid virus has not set anyone back. Time has stood still here in Australia while we try to get on top of it. And in many ways I love that! No traffic no pollution. No traffic accidents! I’ve been playing golf and practising my instrument. No one can travel so there’s no FoMo.

All the best

Anne-Louise

Login or register to post replies.

DT1985's picture
Replies 3
Last reply 7/10/2020 - 4:01pm
Replies by: ed williams, DT1985, tkoss

Happy 4th folks. Hope you all are enjoying the weekend.

So quick recap of me. Diagnosed with Stage 3A back in February. Mole was on the back of my calf, 1.5mm breslow, cancer cells on one lymph node in my groin at less than .5mm. Surgery to remove mole & lymph node went well. Saw Dr. Postow after and a few others, all recommended no treatments since the lymph node was removed and had very few cells. Now I’m getting routine Derm/CT/MRI/PETs (all clean so far)

What’s changed is my genetic test has come back as CDKN2A+. So now aside from melanoma I have pancreatic cancer to worry about. However I’m a fairly healthy and young guy (35, 6’2, 210lbs) and probably won’t have to worry about the pancreatic stuff until later in life.
But with this new genetic discovery, will I constantly develop melanomas now? Should I avoid the sun like a vampire? Should I completely remove every mole on my body? (I have maybe 20 or so besides freckles, not many)

With CDKN2A+, did the road to living a cancer free life just get impossible?

Thank you for help and advice.

Login or register to post replies.

sing123's picture
Replies 2
Last reply 7/6/2020 - 9:56pm
Replies by: sing123, Bubbles

Hi I recall that someone recently posted his email address. Was it you Edwin? Will someone please post it here?

Thanks and Best to all of you!

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!!!

Login or register to post replies.

sj's picture
Replies 3
Last reply 7/4/2020 - 3:50pm
Replies by: sj, caman

Looks like the pain in my hip is related to arthritis I have in my back. That's a relief!

NED after 6 months, scan results are unremarkable. Hopefully I remain unremarkable for the foreseeable future!

Login or register to post replies.

Replies by: MelMel, Bubbles

I have been taking the meds for 13 weeks and due to the fever and chills after taking the medication I had to stop twice.. But currently back on the meds I continue to have fever and chills for one to two hours 4 to 5 hrs after taking the medication.
I came to this group to see what specific procedures have helped to address fever and chills
I and currently taking 650 mg of Tylenol 1 hr before each of the two daily doses of medication. I have also been advised that 5 mg of prednisone is also available to curb the fever
I have stage 4 lung cancer with braf 600 e and without the medication the disease will progress. For the first two months the tumor reduced 30%. But with continuation of fever and chills I am struggling
Given that Melanoma has a much longer history, research backing it and clinical knowledge compared to the Veterans administration in San Diego where I am the only patient with Braf 600e lung cancer and research is limited. The excellent medical staff have reached out to the melanoma staff for feedback but I am also requesting your help because you are and have been in the trenches for long time and may have pertinent information to address this critical concern.

Michael mcdermott

Login or register to post replies.

Pages