Im Alive (so i heard)..

This topic has 12 replies, 10 voices, and was last updated 4 years, 12 months ago by MelanomaMike.

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- December 7, 2019 at 7:19 am
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MelanomaMike
Participant
Hello Family, i dont know how many times i can say sorry for not writing but, i am…Since my first infusion Oct 8th, it took about a few weeks to start a side effect directly or indirectly, causing VERY low energy despite my blood panel being normal for every draw..I was added a palliative care doc to my team recently & he prescribed me Ritalin which im not sure i like, i started it last Tuesday, it helps but drops me like a sack of dry cat chow soon after, i may request another type. Im at my 3rd infuse of INCMGA00012 & i take my Epacadostats twice daily but, i had my first CT scan last week to check activity and all tumors have grown a tad in size, so, then i get a call today from my coordinator, he says Dr. Hamid needs me to do another scan before my next infuse (Dec 30th) to either confirm or disprove actual growth versus inflammation/pseudo-progression etc. if they are increasing, my trial will end, Incyte Corp. doesnt allow continuing meds if my 1st scan shows disease progression (some trial med manufactures dont require stopping so damn soon, mine does (of course)…
So, fingers crossed, i have 5 tumors that need to shrink the hell back before the 30th, or, its plan B…my tumor on my side is still dying, had 2 biopsys to it (ya i know, WTH? Weird trial stuff) getting it removed is impossible during a trial, it hurts!…i miss you guys, i just dont feel good these days, mentally, physicaly & the beginning stages of spiritually. Ill keep you posted ok? I hope MelanomaGin has spoke on my behalf, i said it was ok. I love each & everyone of you & hope stability is in your lives all the way around, ill never forget what you all have done for me by getting me into Dr. Hamids, love ya all…

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Replies

- - December 7, 2019 at 12:01 pm
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  Bubbles
  Participant
  Oh, Mike! Great to hear from you. Sorry things have been so difficult. Melanoma and its treatments are both physical and spiritual insults aren’t they? I am going to keep all fingers and toes crossed for a report of wonderful (because of inflammation and t-cell infiltration kicking melanoma to the curb!!!) pseudoprogression followed by shrinkage come the 30th!!! I know you are more than sick and tired of it all!! I also know that should this trial not be the answer for you, I am sure Hamid and his team have other options waiting in the wings. Hang in there. Feel free to yell and scream and whine and complain here if it helps! You don’t always have to be “up” for us! We got you! Even on down days! Maybe we can’t fix it, but we can sho have a B****-fest with you, as needed! Love and hugs to you and yours! celeste
- - December 7, 2019 at 1:40 pm
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  tedtell1
  Participant
  Mike;
  What does Les say? Something about how melanoma sucks great big green hairy wizards balls! Dude, I echo the other thing she says. You don’t have to feel like posting happy fluffy stuff to come talk to us. We would love to hear good stuff, because we care deeply for you, but we want to hear the whole story. If it helps to come here and tell us how much it sucks, that is fine. I am hoping and praying that your small amount of growth is pseudoprogression also that you get some relief from the pain! We love you brother,
  Ted
- - December 7, 2019 at 2:02 pm
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  Linny
  Participant
  Great to hear from you, Mike. I’m happy to hear that the one tumor on your side is still dying. I’m praying that the ones that are misbehaving are doing so due to inflammation/pseudo-progression.
  
  Even though you have days where you feel like crap, please try to come here if you can. You are loved by many on this board and we are here for you.
- - December 7, 2019 at 2:53 pm
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  DoubleTT
  Participant
  Mike!!! I’ll keep it short as I know I sent a few notes lately. So I ditto what the others have said. I am sending my best vibes into the universe. All my hugs from Canada. Tracey. xxoo
- - December 7, 2019 at 4:23 pm
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  Hitchens
  Participant
  Hey Mike
  
  I am looking forward to you telling us some great news on the 30th.
  Take care
- - December 7, 2019 at 9:41 pm
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  Tilly1402
  Participant
  Lovely to hear from you Mike and completely agree with what everyone has said above. You’re loved and thought of daily and whilst you may not feel well today I do hope you are able to soon. God bless you! X
- - December 8, 2019 at 2:12 am
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  casagrayson
  Participant
  Thanks for checking in, my friend! We worry about you when we don’t hear from you. So …. IF you are physically up to it, come here and scream and throw things (metaphorically, of course). I don’t know Celeste personally and she doesn’t know me, but I have this funny feeling that together we can b*** with the best of them.
  
  Keeping all fingers and toes crossed for Dec 30!
  - December 8, 2019 at 3:37 am
    
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    Bubbles
    Participant
    
    Bahahaha!!! Fo sho!!!! Whatever you need, Mikey! love, c
- - December 8, 2019 at 6:05 am
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  MelMel
  Participant
  So glad to hear from you Mike!!! I have been wondering and thinking of you often. If I could send you energy and pain free moments, I definitely would. I will keep hoping and praying that the next scans show results heading in a positive direction. I just want you to know that regardless of how you feel at the moment, or what the results show, you are my hero!!!
  Melanie
- - December 12, 2019 at 11:28 am
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  MelanomaMike
  Participant
  Hi Family, thank you for your replies, I missed you all! So ya, like I already said, another CT scan to confirm “or” disprove my last one that showed minor tumor growth, I’m bringing Ice packs, that way just before my scan, my tumors will be cold & hopefully shriveled for the scan! It’s like a fighter/boxer cutting weight, if ya wanna stay in the fight ya gotta do some fidging & fudging!! Lol….
- - December 12, 2019 at 1:39 pm
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  jetdoctor67
  Participant
  Hello Mike,
  
  I know we have never met or even talked, but I have followed your story and you never stop amazing me on your strength and courage. I’m praying for you especially and for your Doctors. I wish you a Merry Christmas and Happy New Year.
  
  Terry
  - December 12, 2019 at 2:17 pm
    
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    MelanomaMike
    Participant
    
    Thank you Terry, to be honest, and talking about “Amazement”, it amazes ” ME” that after 7 surgeries (one major, lobectomy lower right lobe of lung) and having done the 3 top line Melanoma drugs out there (Pembro, Nivo & Ipi) all since 2008 when I was 1st diagnosed, that I’m even still standing! Stage 3b right off the bat!, now I’m at 4 of course but, who’s keeping track, 11 years of battle, and I’m here typing to you all haha, talk about Amazement, I’m lucky, I’m VERY lucky guys, and “if” I can’t win this War on Melanoma, you bet your bottom dollar I’m taking these sons of bitches with me, these tumors will one day die, and that’s a fact, for all of us, our tumors will die one day, I can promise you that…..