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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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.

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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

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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

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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

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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

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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.

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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

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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.

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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!!!

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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!

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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

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AmyM's picture
Replies 9
Last reply 7/15/2020 - 4:16am

Hey,
I had posted in April about my dad who was recently diagnosed with brain mets. I wanted to give an update and also ask further advice.
Dad is on targeted therapy enco binni combo & an MRI after 5 weeks of treatment showed shrinkage. It was a satisfactory response but not enough to enable sterotactic radiosurgery. They said they wouldn’t have usually scanned again that early but because I chased it they did which was helpful to see things were moving in the right direction.

Dad was on a high dose of steroids to start and now has been off steroids completely for a week. In addition to the 3 intracranial lesions dad has a Sigatal sinus region lesion and 1 liver lesion. Today we had a review and the doctor said the liver lesion has also shrunk which is great news. An MRI brain is now scheduled for mid July which means he will be 13 weeks on this targeted therapy combo. I am so thankful things are going well and I’m hoping we get further shrinkage to allow sterotactic radiotherapy.

When dad was initially started on the targeted therapy the consultant had said it usually only works for 3 months or so and things would then progress. Immunotherapy wasn’t an option due to high dose of steroids but I’m wondering now as steroids are off should we be thinking about switching to immunotherapy or staying with targeted therapy?
I had expressed my concerns regarding a window of opportunity for immunotherapy and she said we would be continuing on targeted therapy until it no longer worked. Is there people on this forum who are on targeted therapy longer term? I’m not sure if I should be pushing consultant on thinking about switching to immunotherapy as it stands we won’t speak to anyone until end of July. Stereotactic radiosurgery is still on the table if things continue to shrink however when I asked today she said they would usually only use it for people who have max two brain lesions. So I’m concerned he’s already ruled out even if we get all lesions to shrink below 2.5cm. From memory I think lesions are 1.9, 2.3 and 3.1.cm, with the Sagital sinus lesion being 4cm.

Dad is feeling great, he’s 56 tomorrow, still working, strong and active so I just want the best treatment and care for him.
Sorry I have wrote an essay! We are being treated in the NHS in the UK.
Thanks,
Amy

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THMoore's picture
Replies 2
Last reply 7/21/2020 - 5:15pm
Replies by: Bubbles

I’m am BRAF - for the V600 but positive for the K601E BRAF gene. I am researching and am wondering if anyone in this Forum has the K601E gene? If so, what treatments have you and how are you doing?

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caman's picture
Replies 5
Last reply 7/3/2020 - 1:40am

Has anyone here with stage 3 melanoma, started neoadjuvant therapy and had such rapid and great response from the immunotherapy that you decided to skip the surgery and the removal of nodes?

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Gene_S's picture
Replies 5
Last reply 7/13/2020 - 2:54pm

July is the mark of my husbands 8th NED Anniversary!

He was in a Clinical Trial that started in March 2011 and became NED in July 2012. When he became Stage IV with an
unresectable lesion pushing on the C1 C2 Cervical spine, a few subcutaneous lesions, lesions in the lungs and lesions in the liver.
His trial was Ipi (Yervoy) 10 mg/kg IV for every 3 weeks and GMCSF (self injected every day for 14 days and then 7 days off).
He remained on this regiment until Dec. 2013.

He does have vitiligo of the eyebrows, parts of the beard and face down to the collar bone. He also has a few white blotches
on his arms. His adrenal gland does not work properly and has to take 5 mg of prednisone daily.

If you would like to read more about his journey, which started in Jan. 2008 with Stage III and 4 surgeries later he became
Stage IV, check out his profile page.

Judy (loving wife of Gene - Stage !V and NED for 8 years)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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