› Forums › General Melanoma Community › Im still upright
- This topic has 19 replies, 16 voices, and was last updated 4 years, 11 months ago by
Linny.
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- January 11, 2020 at 3:23 am
Hi family, i once again failed to post, i know how important it is for a lot of you to know whats going on good or bad so we may know our own sence of this battle, (and to know on a personal loving level whats going on) this type of cancer sucks ass, my “Anemia” is pretty bad with the blood loss from my Sigmoid tumor wich is very ulcerated and now at 5.0cm, its at the beginning stages of closing up my intestine, my lower back hurts, i cant have a normal bowel movement, i take stuff but its barely helping, all my Hemoglobin, Hematocrit, MCV and others are below normal. I have no energy guys, i just started a newer med called Adderal wich i hope is better then the Ritalin, the Ritalin made me feel depressed after a couple hours, so far the Adderal doesnt, thanks to it im here now with you. Im finaly gettin my big ass 6.0cm baseball tumor removed from my side, that last trial i was on has rules and regulations for keeping an exposed tumor around for biopsies (despite it coming back necrotic both times yet its growing?? Wth) ??, i took one for the team and kept it til now (very painful) my last trial ended due to disease progression, but im signed up for another trial after surgery, its 2 drugs, both done in the chair, each 30 min thank God! a drug “open lable” ICOS (GSK3359609) and OX40 (GSK3174998) both by none other then GlaxoSmithKline haha, they make my tooth paste Sensodyne! And it works, no sensitivity and i can eat hot or cold stuff! so, maybe these drugs will work to…im still waiting for the call for surgery & i start the testing for the trial next Tuesday, alot of tests, alot of blooddraws, ekgs, etc…i love you all, always have, im just burned out, iv been doing this since 2008, but 2017 with Immunal therapies when i got worse, just hang on everybody, we will get this beat, if i can do it, you all stand a good chance to do the same…i pray for all of us…
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- January 11, 2020 at 3:54 am
Oh Mike, I’m sure I’ll be the first of many on the board to say it’s just good to see your name! I wanted to initial right “YEAH” but i didn’t want you to think I was cheering on your pain. THAT SUCKS. I wish we could take that away from you. I can’t imagine the tiredness either, you are literally in battle right now and anemia sucks (as Bubbles said, big green hairy wizard balls, hope I got that right). You are taking one for the team for sure, I sure hope the team gets you a win right back. I’m glad you are on Open Label now. It’s interesting when Sensodyne is so exciting and the most effective product ;). I don’t have any other funny words, you take care of that for the board. You and Julie literally make me laugh out loud, I don’t know how you do it when you are going through so much, what are you Californians doing that make you so funny!? Don’t answer that! Just literally sending you vibes through the universal channels. HUGS Brother-
- January 11, 2020 at 5:54 am
Hi Jackie, thanks for your reply, i know i needed to post and i did, its just so hard these days, its like my body is trying to shut down, i know depression doesnt help either, these Adderals seem to be ok, they dont give me a “jonzing” withdrawl feel a few hours after taking them, my Palliative doc at the Angeles Clinic is great, hes trying his best to pick me up so i feel worth a shit. Haha, it is ironic you find both Julie (my SoCal Sister) and i humorous, we are both here not very far apart, maybe its all the 2nd hand marijuana in the air lol, iv always loved comedy, i even correct movies or commercials of what would have been funnier but with my twist on it!..lol…(legend in my own mind)….having this tumor taking out will be a much needed Victory, a Win, i need it badly….love ya sis…
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- January 11, 2020 at 4:08 am
Oh my gosh. Great to see your post. Get that baseball tumor out of there, and I’m especially glad to hear there’s another trial on the horizon. I really hope it’s positive.-
- January 12, 2020 at 2:03 am
Love ya brother, i wish we could all get together, thats why i play the lottery, flying everyone out to Hawaii is in my top 3 goals, 1st is to purchase hundreds of acres to open an Animal Rescue, 2nd, to start up a 24hr Ambulatory Service for injured animals (pets etc)…
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- January 11, 2020 at 2:29 pm
Hi Mike, great to hear from you and as you know I am a big fan of Dr. Omid Hamid and have been posting his work for years. Here is an old video from 2016 talking about the future treatment and promising trials and if you go to the 5 min mark up to 8 min mark he talks about Ox-40 and other activating receptors on T-cells. As a contrast there is a section that gets into IDO inhibitor epacadostat which didn’t work out, and if you contrast this video with the second video from 2019 you can see how far melanoma research has come and your Dr. has been at the cutting edge of things. Best Wishes!!! Ed https://www.youtube.com/watch?v=osg1o-rhock https://www.youtube.com/watch?v=fbSHUEbhTho&feature=youtu.be-
- January 12, 2020 at 2:17 am
Hi Ed, thanks for Hamids link, i actually saw this just after i started at The Angeles clinic! But, back then i wasnt offered the OX40 yet til now…i hope it works Ed, Pembro, Ipi & Nivo, incmga00012 & Epacadostat have not been powerful enough to conquer my particular strain of Melanoma, their tough sons of witches i tell ya…hope your well Ed and thank you for being here, a lot of us if not “all”, love the heck out of you….
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- January 11, 2020 at 3:05 pm
Oh, Mike!! So good to “see” you here!! So very sorry for your miseries!!! So very grateful that Hamid is doing his job and working to find the treatment that works for YOU!!!!!!!!!!!!! I know you are more than ready to see some fruit from those labors – his and YOURS (the most!!)! Jackie hit the nail on the head with all that suck-age!! And the Edster is on point regarding Hamid and OX40. I’ve even seen some positive news of late where they are pairing it with drugs like the one you are on to good effect! You hang in there. Gonna keep fingers and toes crossed that you get some relief soon. We love you!!! celeste -
- January 11, 2020 at 9:23 pm
YAY! He’s alive!! 🙂 (Sorry. Dark humor at best. I knew you were alive and kickin’ — just wanted to hear from you!) I’m sorry things have been so rough. Getting that painful tumor out of there will make a big difference, I’m sure! Then on to the next trial; fortunately the melanoma bag of tricks keeps getting bigger and bigger and there’s always something else to try! Living with a chronic disease can be terribly depressing, and I’m sure there are days that you just don’t have any wind in your sails. If you can, on those days, muster up enough energy to let us know you need some encouragement; don’t go through those days alone!!! Love ya, buddy!! -
- January 11, 2020 at 10:21 pm
Hi Mike
Glad to see your still with us and pushing on with the fight. It all sucks but while there is a new treatment to try we have to have hope. Have u looked into a TILS trials as a few people are having success on it in the UK. Trying to get on a TILS trial myself but not managed it yet.
Keep fighting Mike
Mark -
- January 12, 2020 at 1:58 am
Thank you all, no matter if i dont write as often, i NEVER forget about you all and our best “cancer club” here at MRF!…Thanks Ed for the link about my drug, i will view it after i press “Post Message”…love you guys, ill be around more often, this newer med (Adderal) is waay better then then the Ritalin, it doesnt drop me like a sack of sh@t after an hour…. -
- January 12, 2020 at 5:11 pm
Mike;
Wonderful to hear from you brother. Glad you are getting surgery to get that monster out. Hoping and praying that that will bring you some relief and this new trial kicks melanoma’s but to the curb. We love you and you are constantly with us in our hearts. Keep on keeping on…..
Ted -
- January 12, 2020 at 7:34 pm
Your strength and humour inspires me!
I am gutted that the last trial wasn’t a success but over the moon another is lined up.
Sending positivity, my very best wishes for something that shrinks those blighters and of course some respite from this relentless pounding your body (and mental health) is taking.Thinking of you and, like so many, remain by your side.
Take of Yourself!
XxX -
- January 12, 2020 at 8:38 pm
Hey Mike, keep up the fight brother! I’ve read through alot of ur post and you’re a fighter man! I was just recently told they found a mass in my abdomen-simoid colon causing stricture. I pray the best for you !-
- January 13, 2020 at 12:59 am
Hi Mike, thanks for posting, am glad you are back, sorry about the news but now that ritalin is dropped then I hope you will feel better.
You are going through a lot, I hope the surgeries will be done soon and go well, and that then the drugs (or some combination, or delayed effects of previous immunotherapy) kick in
I know Hamid is excellent so you have the best care. I am an intralesional fan, combined with immunotherapy, but guess Hamid’s approach is the best, hope you get on the trial soon
Am sorry you have so much to go through
We do / did miss you on the board and think of you
Best wishes Mark
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- January 13, 2020 at 4:28 am
Mike, it’s wonderful to finally see and read your post! I am sorry you are feeling beat but with the new drug, surgery and a new trial hopefully you will feel much stronger and finally be on the mend. After all, New Year and new you!
So from one M&M to another, best wishes and much treatment success.
By the way, do you like M&M’s?
Melanie
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