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Hello Family!

Hello Family!

Posted By
11/8/2019 5:55pm
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Replies: 10

Here i am haha, sorry for my MIA bout, not sure if i mentioned in my very last post this new stuff seemed to cause a "depression" type feeling, and we know, when we take immunal, chemo, monoclonal etc therapies, it can mess up our brain chemistry not always our glands and or organs. But, now whats a trip is, i just did infusion #2 of my INCMGA00012 Tuesday (Nov 5th) and i swear to God it seemed to have knocked out whatever it was that i was affected by, plus, im about 2 weeks in taking my Iron pills (65mg) which i take every other day so i dont get "backed up", not ideal when i already have a tumor in my Sigmoid messin with my bowels to began with! Just for precaution and my coordinator Nan agrees, everyother day is perfect.
Monday i go in for another biopsy to the same tumor, the one on my side, now remember, iv already had it biopsied only to come back dead (Nectrotic) no Mel cells where found, both my Clinical trial coordinators think its odd for my doc Dr. Hamid to allow yet another biopsy to it, im sure he has his reasons and a trick up his sleeve! I want it out though! Hopefully afterwards we can, we did talk about it but have to do the biopsy again then we will, quality of life purposes! It hurts! I havnt slept on my left side now for almost what, 6 months!... ill do my CT Scan Nov 29th, im anxious as well as you all to see the results!! Incmga00012 & Epacadostat could very well be the next BIG thing for us!! Like i said before, alow me to test it first, smooth out the wrinkles a bit, then will get it FDA approved! Im so glad i feel better, did i mention i had a grade 2 rash? "Acneform" is what it resembled, no itch thank God, and its gone now without any treatment or set backs...i love you guys, and hope you all are stable... gunna browse a bit, im hangin in there guys, i cant wait for my next scan to see whats up!!

Melanoma Will Not Beat Me or my MRF Family!

DoubleTT - (11/8/2019 - 9:49pm)

omg Mike..... I was my pants. I told my whole family here in Toronto about this site. I told them about Celeste bubbles the doc. ed , mel mel, etc. and u and the trial u are doing as my prog being NRAS is shit ...I told them the crap u have been thru and others on this site ...and uggh u go missing.!!!!! imagine my fright for you etc. So here u are back on again you rockstar.. and my whole family did the happy wave....thank you for finding the strength to let us all know you are doing it to be well and to help the rest of us...thank you!!! tt from Toronto Canada

<p>Double TT- Toronto Canada</p>

MelMel - (11/9/2019 - 4:55am)

It's really such a relief to hear from you Mike! Sounds like you are on quite the ride. It's been a rollercoaster for me as well. You mentioned iron pills and the unwanted side effects. I don't like mentioning companies nor products but there is a well known German product that has been around for ages and is extremely well tolerated and tastes terrific. It is a liquid form of iron and is known as Floradix Liquid Iron. See if your oncologists approve of it. Hoping that you weather the side effects and knock the melanoma out.
I have my judgement day on Nov. 11 th. For now, I am amazingly calm but I know this can change in an instant.
Sending you only the best wishes and positive vibes.

tedtell1 - (11/9/2019 - 6:57am)

Great to hear from you Mike. Sorry that the darkness took over for a while....glad that you have been able to push it back. I hope you get some relief from the pain in your side soon!
Thanks for letting us know how you are doing.

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

lkb - (11/9/2019 - 11:35pm)

Mike, after iron pills caused the predictable traffic jam in my guts, I had two iron infusions. No gut problems, and my symptoms (muscle spasms, cold extremities) are largely gone. Glad you're feeling better.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .


AnxiousDad - (11/10/2019 - 4:58am)

Good to hear from you man. I mainly lurk , but your humor and positivity has helped me so much...I just wanted to step out of the shadows and give you a huge hug. Fantastic.

MelanomaMike - (11/10/2019 - 2:17pm)

Thank you guys! And to all who may write afterwards, this whole clinical trial has been a trip, like i said before, a lot different then doing regular FDA approved meds your in & out the chair with those drugs, but the trial stuff? Oh no no no, your gettin 30 vials of blood drained from ya before you go anywhere with EKG's throughout my stay, real thorough to say the least. But, with all the fuss of heavy monitoring and weekly visits, its starting to spread out now and im not scheduled to come in every week for example my 2nd med i take, (Epacadostat) i wont take it that morning (there pill form) then drive on down there, first they take blood, THEN I take my dose 400mg wait like an hour, do blood, then wait an additional 2hrs take blood again then i can go home! Its a trip, but i wouldnt change this for anything! You know, after seeing that idiot doc in Kaiser Riverside and him offering me ancient meds that has NO overall survival benefits,(basicly called the Dartmouth Protocol) plus him "lying" to me saying theres no Clinical Trials for me, ya, im sittin pretty just where im at! Oh! And to add, ill keep the graphics to a low roar, (i think im the only here with Mel in the ol intestines????) but, my stool isnt so bloody anymore, maybe once a week itll show AND! My good ol poopys are like "normal" sizes (girth wise) before they where on the "thin" skinny side! embarrassing to talk about but you all need to know how my ass is doing right? starting to think these 2 trial drugs are working, my lung lesions we will see after my scan, my right buttock (muscle) one is still there & lightly painful when i lay on my right but i manuever myself to where it doesnt hurt, then, my golfball tumor on side is being biopsied again tomorrow (previously determined Necrotic) Hopefully that will be extracted! My sleeping positions are limited as you can tell, sucks.....well guys, ya know i love ya, ill check back soon...

Melanoma Will Not Beat Me or my MRF Family!

Bubbles - (11/11/2019 - 5:06pm)

Hey Mike,

Lord knows after all you have been through, and had to worry over, then starting the trail process ~ you have had more than a few reasons for feeling down and that's not even addressing the possible effects of your new drug regimen!!! Yes, clinical trials are not for the faint of heart!!! The life of a rattie is pretty crazy!! Hang tough. Take care of you! Will keep all fingers and toes crossed for good results in your upcoming scans and biopsy!!! Yours, celeste

Anonymous - (11/12/2019 - 4:23pm)


DoubleTT - (12/1/2019 - 12:41pm)

Hello Mike...its December 1st! Was checking in to see how your November 29th CT scan went. How are trial treatments??? Fid Dr. Hamid do the biopsy? Hugs Tracey from Toronto.

<p>Double TT- Toronto Canada</p>

jbronicki - (12/2/2019 - 9:15pm)

Just got back on the board Mike and looked immediately to find out how you are! You are a superstar Mike, you are right, the clinical trial experience is definitely different than doing an already approved treatment and standard of care. Working with the researchers when they design this stuff, I can confirm they want ALL the data and definitely need the blood for all the genetic, biomarker, RNA, aliquots (new word I'm learning in our data collection). I can speak for those researchers I work with, they really want to figure this out for the patients, and probably rightfully so for research, but doesn't make it any easier on the person going through the pokes, prods, imaging, appointments, tests, procedures, etc.. So proud of you Mike. Most importantly, I hope it works great for you, but it is pretty meaningful what you are doing for others too.

My christmas wish is for you, just to keep moving forward and that we here good news about your scans. FINGERS CROSSED.

Jackie <3