MPIP: Melanoma Patients Information Page

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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Sam33's picture
Replies 2
Last reply 6/5/2018 - 6:14pm
Replies by: Anonymous, DoubleTT

Hello everyone.

I was using combination (Yervoy & Opdivo- reverse dose) and I had my 3rd dose, a few days ago. I had bilateral lungs and 2 bone metastases. And i will have my petCT next week to understand the effectiveness of the combination. I am praying and hoping to have good results.

My oncologist in MDA told me to add Trametinib if there is a progression with the combination drugs, although I am NRAS positive. The local one thinks, there will be no benefit to add Trametinib. I am very confused. Has any NRAS patient used Trametinib and combination together? Does anyone know the sucess rate of Trametinib in NRAS patients? Any research, experiences or thoughts are welcomed.

Best,

Sam

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VinceMart's picture
Replies 2
Last reply 6/10/2018 - 11:25pm
Replies by: Holliesig, Prd10

Hi all, 

Been on Mekinist for a few weeks with no problems, added in Keytruda last week and now my face, head and back is covered in an acne rash.  Dr. Said hydrocortisone cream but it's been 4 days and not looking any better.  Anyone else have a side effect like this and if so what did you use.  Thanks

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2Kathy's picture
Replies 7
Last reply 6/5/2018 - 9:13pm

I'm glad I found this site and this forum. A lot of what I'm reading here is over my head because I am so newly diagnosed. I know in time I will come to be able to understand all of this too well.

My story is pretty short since I haven't gotten my staging yet (it will be stage iii or stage iv). I'm 56. I had noticed some itching and weird feeling in my upper thigh/groin but it wasn't painful, just...a little off. It started to bother more towards the end of April and I could see the area was swollen a bit though I didn't feel a specific mass.

I went to the doctor's on May 3, had a CT-Scan, then an ultrasound and a core biopsy and got my diagnosis on May 14 - melanoma that had spread to the lymph node in my groin.  Since then, I have begun care at Dana-Farber and had appointments with the care team. I had my PET/CT scan yesterday afternoon and brain MRi this morning. They haven't been able to find the original melanoma. 

And on Tuesday I meet with the medical oncologist to get the results, find out the staging and learn what treatment plan they recommend.

I'm devastated, obviously.  I have depressive disorder as well and that's a bit of an extra bump in the road in terms of how well I'm managing all this. This upcoming week, my primary concern is going into my Tuesday meeting with as good and understanding as possible of the medical part of things - having a good understanding of the various stage 3 and stage 4 treatment options. I'll be going to the appointment alone, but recording it and reviewing with a nurse friend later. 

I hope to be able to learn a lot here and understand better what's in store for me. 

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Spl25's picture
Replies 5
Last reply 6/3/2018 - 10:14am
Replies by: ed williams, Spl25, Janner

Hi all. Just thinking ahead here: If, say, one were to be rendered NED, then later show evidence of recurrence in a single lymph node, can one be treated as 3a (meaning surgical removal + neoadjuvant immuno treatement)?

I notice they are called "restaging scans" after all. 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/3/2018 - 2:33pm
Replies by: DaniS, Anonymous, ldub

Ok there's my story ....39 years old mother of two beautiful babies ! Been in USA only for less then 10 years originally from east Europe . 

For like over 20 yrs I have some very strange looking mole behind my knee ,never bother me but last months got bigger and darker .Went to my family doctor last week and he gave me scary look and send me to dermatologist !

Been there 3 days ago and he spend no more then 2 seconds did a biopsy and walk out !!! Not a word !!!!! 

Now I am convinced that it's melanoma ! 

The mole looked like a skin tag with very dark brown irregular top ! Can't stop crying going crazy !!! My kids have no one other then me !!!!!

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napavalleymogie's picture
Replies 8
Last reply 6/4/2018 - 11:44pm

Hi All, 

It royaly sucks that any of us are here.  Stage IIIC with in transit tumors from incision site.  I am now on the combo treatment for the second infusion.  Tumors seem to be growing and makes me nervous. Anyone have knowledge of how tumors look when getting better? 

If is is not working, the next step or question is Tvek, TIL, Crispr 9....  what are the next things on the horizon?  with the new bill "right to treatment" how will this change things?

My tumors on surface in transit with clear ct scan.  1 year since first SNLB.  Keytruda didn't work. 

Also, who knows about the new microdose approach (ron levy - stanford)? 

Appreciate the advise, 

Eric

Eric Mogensen

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Drew N's picture
Replies 2
Last reply 6/7/2018 - 3:01pm
Replies by: Julie in SoCal, Becky

Hi folks. I realized that in my move across the country to a new job I didn't do my annual "still here on the green side of the grass" report. So I'm still on the green side of the grass.

I am Stage III-b and had surgery and INF in early 2009. No recurrence since. In fact, I kind of missed a whole year as far as a checkup. My new onco in Iowa told me to focus on dermatology appointments but that we'd not be doing regular scans.

9 years, folks, and I have scars and gratitude to show for it. My best wishes to everyone who is in the fight now.

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MelanomaMike's picture
Replies 8
Last reply 6/5/2018 - 12:55pm

Hi Family, hope some or "all" is feeling as good as i am, that whole 9 yards of not eating for a week, vomiting, dry heaves was LIVING HELL as far as i could name it. Thank You to all who replied to my last post with love & support {May 31st} when i Finally stepped out of that hell,  and back to earth, i mean, knock on wood {or Faux if thats what you got} im feeling good, eating good, my whole being has returned & my wife hasnt cried in 2 days :}.. Like someone pointed out, i had to do what i had to do, and taking over the deceased mans Megace may have not been "legal" wich it isnt, but i was willing to treat myself & thank God after 2 teaspoons fulls & within 18hrs i was cured! That whole week was like i was possessed, and i was tripping that this was the end, saying to myself "So This Is How It Ends? i serious thought i was a gon'er...Im back playing my music, music has been my friend since i was 7 years old, its gotten me through tough "and" good times so, im actually right now  jamming SoundGardens last studio album {2012} titled "King Animal", what i call "part 2" to Superunknown album.and by the way, RIP to Chris Cornell {May 18th 2017} former singer of SoundGarden bless his beautiful soul & a voice that will live on....

 Take care MRF Family, we will endure all that is thrown at us, we will become NED even if its just for a short time, were not asking for a cure cuz there isnt, were just asking to stay alive for just another day or two or three....Love ya all, Mike..

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MelSettle's picture
Replies 6
Last reply 5/31/2018 - 10:32pm

3 weeks ago I had 3 suspicious moles removed and today the dermatologist called and said that the one on my back/flank area was melanoma. She said it was shallow at .2 mm and that I would need to come in next Wednesday to get more removed to check the margins. I am so anxious and trying to figure out what all of this means? I seriously feel like I might be about to have a panic attack. You can't really get a staging until they remove the tissue around is that correct? Will it take another 3 weeks to get those results??? Thank you so much for any insight. 

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Julie in SoCal's picture
Replies 9
Last reply 6/2/2018 - 4:14pm

Hi there friends,

Just want to update you on my plans. Tues. I had scans and saw the Rock Star Onc Doc.  And the good news is that my scans are clear; there's no funk, no nothing, completely unremarkable.  I love it. This was the best news yet.

When I talked with the Rock Star, I asked him about trials that have an intertumoral injection.  We talked about them for a bit.  Surprisingly, I might qualify even with NSCLung Cancer, but RS Doc didn't want to hit me with anymore PD-1s at this point in time.  I had some pretty severe joint pain (ok it nearly crippled me) and I'm just now recovering (second new knee is coming next month!!), so this made sense to me. 

So the plan is to together with RS Doc talk with a surgeon and see about if ultrasound could help identify all of the hiding Mel babies in my arm.  And see if we could just cut them out.  This also makes sense to me.  If there not in my arm they are not having babies and sending those babies on a journey to my lungs or liver or... But we're just talking  and thinking thorough options.

I haven't talked ILP with the Rock Star.  So far all my mets have been in my arm, so theoretically this makes sense to me.  But it seems rough and the poor arm has lymphadema and I can't imagine it would be happy going through ILP.  Thoughts? I'm just talking out loud at this point.

Thanks for listening, friends!

Peace!

Julie

(still not a robot)

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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AMcReader's picture
Replies 6
Last reply 6/1/2018 - 2:59pm

My first brain MRI since starting Nivo in april quickly approaching (June 11). The full PET scan won’t be for a few weeks after that but since I’ve already had a brain met that was removed via craniotomy, I’m especially anxious for this first scan. Does anyone have any advice or insight into how you’ve managed “scanxiety”? After a few months of feeling relatively normal, melanoma is all I can think about for the past several days...

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two small lung mets. Started Opdivo 4/16/18.

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tedtell1's picture
Replies 1
Last reply 6/3/2018 - 7:41am
Replies by: Anonymous

Hi friends;

I have had a white spot on the back of my throat for a month now. It hasn't gotten smaller and is maybe a little bit bigger. I have had mouth sores from my treatments, those generally came and went in a couple of days. This isn't very painful like the other sores and really weird that it has lasted so long. Went onco today, they are sending me to ENT next week for check/possible biopsy. Anyone experienced this. It is about 2-3MM across, a little bigger than my other sores have been. White with some redness around it. Also dealing with continous belly issues despite the prednisone so am going in for a colonoscopy....it will be a fun week next week!

Thanks everybody,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Alovingdaughter's picture
Replies 5
Last reply 5/31/2018 - 8:36pm

Hi there. My Dad is stage IV with mets in his lung and bone. He started Yervoy/Opdivo (first infusion was last week Friday), and so far he is feeling great and full of energy. In no way do I wish him nasty side effects, but the worry wart in me can't help but wonder if no side effects so far means his body isn't responding to the immunotherapy? Can anyone shed some light on this? We are 6 days our from treatment #1, so it may be too soon to tell?

Thanks in advance. I've read all the posts in this forum since January 2018 (working my way back in time!) All info found here has been incredibly helpful.

Amanda

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/1/2018 - 10:27am
Replies by: Anonymous

Hi I’m brand new to this site & was wondering if we are allowed to post pics on here when seeking advice? 

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Anna.helena.gray's picture
Replies 2
Last reply 6/1/2018 - 9:02pm
Replies by: KAF, Anonymous

Hey everyone I'm just wondering if anyone else has or is experiencing hair loss after their diagnosis possibly not treatment related?
I haven't started treatment yet but I seem to be losing more hair than normal and I am covered in bruises but that may just be my 2 year old!

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