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Trial Combo Has Invaded The Enemy

Forums Cutaneous Melanoma Community Trial Combo Has Invaded The Enemy

  • Post
    MelanomaMike
    Participant
      Hi Family, yesterday went smooth, tons of bloodwork EKG’s, and regular vitals ALL FREAKIN day, i started the meds at about 10am, took the Epacadostat (pills 400mg, one is 100mg the other is 300mg ill take that twice a day) then right after, they set the drip box to began my IV (only 1hr thank God) and the INCMGA00012 flowed thru my body without any toxicity reactions or vital set backs, i was there from 7am to 4pm, heavy monitoring, my team is just the best! Both coordinators Roland and Nan, Nan & i hit it off right off the bat were both Irish, she 100% im 50% (Mom) and both extreme feline lovers and animal welfare advocate soldiers! Then theres the Prophet Of Melanoma Warfare, Dr. Hamid! And let me tell you, besides his heavy knowledge of Cancer, he is so FUNNY! theres a side of him you will not see in his conference/interview videos!! ….I have some good news guys! My tumor on my left side (stomach under ribs) biopsy shows its NECROTIC! Dead freakin Mel cells! (No sign of Mel!!) My last bag of Opdivo was June 23rd, and this goes to show what we already knew and have said, Immunal therapies can continue working its biological magic months & months after stoppage….A “Quality of life” surgery may be performed to cut the rest out, its still painfill!(thank you for my GFMe money cuz thats not covered!) Plus im gettin a a kickass “Port” put in! Its under the skin!! Iv never seen one like it!! Oh! And as far as my recent CT scan not showing my already confirmed Mel Tumor in my Sigmoid (intestine) CT’ s are not always reliable, one day its there, next scan its not! Were keepin a watchful eye though, what if the Opdivo is working there to! I still know “somethings” there, ill spare you the graphics!..Haha, its like ive only been in Hamids hands for a month and the crap is disappearing! And NOT by my trial meds either! (Not yet anyways!)….im feeling run down, a little more then Pembro, Ipi & Nivo plus my stomach is a bit in a knot, not diahrea, just a mild pain, a bit dizzy, not all the time, comes & goes, so far so good guys, i think im doing the next BIG thing for future treatment for my MRF Peeps!… love ya all, ill write later…im so hopeful now…
    Viewing 25 reply threads
    • Replies
        QuietPoet
        Participant
          I wish I could just post a “heart” emoji.

          –Fellow Californian, but up here in the north — waiting for a power shutoff.

            MelanomaMike
            Participant
              NorCal sister! I actually forgot you to are a fellow Californian! So is HappyGal (bless her heart) shes up in the Sac area i believe in Folsom…ya, stupid PG&E are protecting their butts, fires arnt always arson come to find out! Its BS their planning a stoppage of your electricity, California is apparently the 3rd largest economy in the WORLD and yet we cant get it together! Highest gas prices in the nation to! But i digress haha….im truelly happy with my new oncology team, its nite & day compared to Kaiser…even the facility looks like an Art Museum!
            JudiAU
            Participant
              Really wonderful new Mike.
                MelanomaMike
                Participant
                  Thank you Judi!
                  Rond
                  Participant
                    Really great news Mike, so glad to hear it!
                  rosa1
                  Participant
                    So very happy for you Mike. Wishing you all the best!
                    Rosa
                      MelanomaMike
                      Participant
                        Sister Rosa! Thank you! Im blessed for sure…
                      tedtell1
                      Participant
                        Mike;
                        Great news about that nasty monster in your stomach! Now, on to conquer the rest of that beast in your body. So happy that you are feeling good about the battle.
                        You have an awful lot of supporters, I even have my wife following your story now. Keep on keepin on buddy.
                        God Bless,
                        Ted
                          MelanomaMike
                          Participant
                            Thank you Ted! I feel honored you enlightened your wife about me! Haha, im just a simple man with a complexed issue with Melanoma! My hobbies are woodworking, short walks (bad Aorta) and fighting Melanoma! Pretty simple haha…love ya brother….
                          SABKLYN
                          Participant
                            Great news! Thanks for the update and keep kicking ass!
                              MelanomaMike
                              Participant
                                Thank you brother! Im in a waaaaay better place both Mentally and Clinically now! That light id see at the end of the tunnel turns out NOT to be the front if oncoming train after all! It was Dr. Hamid with his flash light….love ya man…
                              Bubbles
                              Participant
                                Excellent, Mike! May the tumor disappearing act continue and side effects be minimal!!! You are rocking this! c
                                  MelanomaMike
                                  Participant
                                    Buuuuuuuuubles! I know right?! Gettin that recent biopsy report back to show its Necrotic was AMAZING! Immunal Therapy wasnt a total waste for “ME” it did perform bitter/sweet at best for “me” (thats ME folks, so dont be discouraged if yer reading this and are thinking about trying immunal drugs! Their all AEWSOME with proven data!! My Melanoma is just stubborn thats all!) Thanks Celeste, you have NO idea how fond i am of you….
                                  mandyjill
                                  Participant
                                    This is bringing tears to my eyes. I am so excited for you!
                                      MelanomaMike
                                      Participant
                                        Sister Mandy! Aaaaw! Dont get me started to! My wife & i had a short cry (atleast i did) over all this, i played a dear song called ” 3 Libras” by “A Perfect Circle” didnt know it would effect us the way it did, very pretty, deep song, i love music Mandy, it has gotten me through all my toughest times, all my infusions and while i woodwork….it felt good to get some crammed in emotions out, Melanoma sucks, since 2008? It goes on & on & on & on ya know? Im tired.. love ya sis..i pray every nite for my you & my Mel Peeps…
                                      BethL
                                      Participant
                                        TERRIFIC news, Mike! So happy to hear this.
                                        rest easy – bethl
                                          MelanomaMike
                                          Participant
                                            Bethl! Tjank you soo soo much, im glad i got my butt back in the chair at the Juice Bar, ive been away for to long! June 23rd was my last drop of Opdivo before i was halted at Kaiser, so, feels trippy doing a trial though! I feel like a Guinea pig! Love ya sis!
                                          sks2019
                                          Participant
                                            Wish we had some emoji’s here , you are a true warrior and your positivity gives strength to me. I wish you all the best. I am glad opdivo is still kicking it.
                                            Good luck. Lots of prayers
                                              MelanomaMike
                                              Participant
                                                Sister SKS! Thank you so! I cant believe that biopsy came back the way it did, i was NOT expecting that! 80% of scans, biopsys i do ALL follow with rotten news so, it was nice to catch a break! Love ya lots and hope your mother inlaw (mother inlaw right??!!) Is back doing her immunal juice!!??
                                              Casitas1
                                              Participant
                                                Yes Sir! Keep it up Mike! How often are your infusions at Angeles?

                                                Best, Paul

                                                  MelanomaMike
                                                  Participant
                                                    Brother Paul! Yep, im very happy with my new team, their all freakin awesome, nite & day from Kaiser! I mean, my primary oncoligist Dr. Pakanati at Kaiser was a great lady, she threw what she could at my Mel but, its not her fault it didnt work the way it should have….im a every 28 day infuse, my next one is Nov 5th, then Dec 3rd then Dec 30th but ill be going inbetween those infusions for biopsys, scans and a few Epacadostat observations, i wont take my Epacadostat pills that morning and take em there so they can do bloodwork and observation for 4hrs, i actually do that next week the 15th 9am…these trials keep ya busy! Daaaamn! But whatever it takes right?
                                                  sharonlynn210
                                                  Participant
                                                    🙂
                                                      MelanomaMike
                                                      Participant
                                                        Thank you Shar! Im blessed, truelly blessed and you all (including my wife) got me there to Dr. Hamid! That idiot at Kaiser Riverside was a joke, non sensitive, behind the times and my BIGGEST BEEF was he Lied to me by saying there wasnt any Clinical Trials for me! But, im in good hands now, and im “in” a clinical trial as we type!
                                                      marta010
                                                      Participant
                                                        Super news! Glad you hit it off with the new team. Helps to feel like you’re more than just a test result or scan. Keep the good news coming!
                                                        Ann
                                                          MelanomaMike
                                                          Participant
                                                            Thank you Ann! I dont geel like a “number” like you brushed on, i feel human or somewhat human, im still recovering from Kaiser haha…Kaiser wasnt that bad, hell! I was diagnosed in 2008 and im STILL HERE! And i was at stage 3b at diagnosis! Cant complain to much but, these folks at The Angeles Clinic are pure medical professionals! Im in good hands now, its them who will carry the ball the extra distances…..
                                                          MichelleRHG
                                                          Participant
                                                            Yay!!
                                                              MelanomaMike
                                                              Participant
                                                                Thanks Michelle! I am blessed like ive said, i feel like theres Hope now! I could only wish and hope you all are in the Same care, i almost feel bad like “I” have the best care in the world and everyone else doesnt, but i know that cant be true, alot of you have wonderful, caring oncologist….
                                                              ourvan
                                                              Participant
                                                                I’m so glad to read that the news is good and your hope is restored – that’s a huge part of healing and conquering, right?! We’re all here sending healing vibes and thoughtful prayers. Keep up the fight and hope any side effects remain at a minimum.
                                                                laurie
                                                                  MelanomaMike
                                                                  Participant
                                                                    Hell ya sis! Before i was always up in the air about my treatment, all 3 meds, Pembro, Ipi and Nivo was all bitter sweet in its effort to kill my Melanoma but now i think i might be into something groovy! 🙂 i really hope it works and it can get FDA approved to you guys who arnt having such a good time in your own fights with the Mel Monster!
                                                                  chrispl1974
                                                                  Participant
                                                                    Great Mike, you and the triple attack will beath this damn motherf^&&$ Melanoma !!!!
                                                                      MelanomaMike
                                                                      Participant
                                                                        Haha! Hell ya brother Chris! “residual” Opdivo PLUS the new Incmga00012 & Epacadostat? Somethings gotta give like ive always begged for! I mean, part of my begging got me a Dead tumor so far! I guess if ya beg for so long, ones personal biology throws you a bone haha…
                                                                      Coragirl
                                                                      Participant
                                                                        Wonderful! I think of you daily and send prayers and love and good vibes your way. You are such a special guy.
                                                                          MelanomaMike
                                                                          Participant
                                                                            Thank you sister Amie! And your a special gal to! I think its safe AND CORRECT to say were ALL special cuz to have Melanoma is still considered “Rare” amongst the many quote “Skin” cancers out there, its just the part about it being the Deadliest is the scary part of its truth…so ya, were all special!!
                                                                          Affected
                                                                          Participant
                                                                            Hi Mike,

                                                                            You’ve truly made my day! I’m so so happy. Please please stay healthy and keep fighting the melanoma. If it weren’t so late (2:00am here in Ireland), I’d wake my husband to tell him that there is now even more hope with possibly new medicines being approved soon in case the radiotherapy and Nivo do not end up working.

                                                                            Thank you for keeping us updated.

                                                                            Affected

                                                                              MelanomaMike
                                                                              Participant
                                                                                Sister Affected! Love ya sis, and your dear warrior Husband, let me work through the nooks & crannys, help with the fine tunning of these new meds first Then! we will see if data shows good responses, ill be able to “relay” to you all in real time after each future CT, MRI & PET scans if my tumors are responding or not so, thats kinda cool and very interesting right? So pop some popcorn and crack open a Guinness or Mickey’s and let this play out like a good documentary!
                                                                              doragsda
                                                                              Participant
                                                                                Excellent news, Mike. Best wishes for a successful regimen at Angeles.

                                                                                You’re right about Dr. Hamid’s sense of humor. My wife’s local onco had told her he thought her melanoma was back in her brain because of an area in a MRI. Two weeks later we were seeing Hamid on a routine follow up and his comment was, “the shit has NOT hit the fan, I think this is just the immunotherapy causing a response to radiation damaged tissue, so don’t worry yet, we’re going to watch it closely.” That was a year ago and he was right. I really didn’t expect this world famous medical specialist to be so down to earth and supportive of his patients.

                                                                                Looking forward to your next update.

                                                                                Dave in San Luis Obispo

                                                                                  MelanomaMike
                                                                                  Participant
                                                                                    Thank you Dave! And bless your wife Stephanie’s heart! She has a great husband behind her! I forgot that you both have Dr. Hamid in your team, you did mention that in past posts when i began my own journey trying to see him! See!!?? You know what im talking about concerning Omids sense of humor! Hes down to earth and is a straight shooter! And isnt affraid if using certain “words” to inhance his emotional meaning of what hes relaying to you haha…like ive said, i just hope all our MRF peeps have a Dr. Hamid in their corner, i almost feel guilty!… take care brother, and continue standing by your special gal…
                                                                                    MelanomaMike
                                                                                    Participant
                                                                                      Thank you Dave! And bless your wife Stephanie’s heart! She has a great husband behind her! I forgot that you both have Dr. Hamid in your team, you did mention that in past posts when i began my own journey trying to see him! See!!?? You know what im talking about concerning Omids sense of humor! Hes down to earth and is a straight shooter! And isnt affraid if using certain “words” to inhance his emotional meaning of what hes relaying to you haha…like ive said, i just hope all our MRF peeps have a Dr. Hamid in their corner, i almost feel guilty!… take care brother, and continue standing by your special gal…
                                                                                    lkb
                                                                                    Participant
                                                                                      Hooray, MM! Dig that necro news. Sounds like your sun is shining today.
                                                                                      Lisa
                                                                                      Baby_Girl
                                                                                      Participant
                                                                                        Absolutely wonderful news!!! I love your attitude and fight! And thank you for keeping us updated!
                                                                                          MelanomaMike
                                                                                          Participant
                                                                                            Thank you BabyGirl! I feel good i really do with all this, im a bit at ease now that ive had my 1st infusion of my med the other is a pill (thank God!, less time in the recliner!! Haha) im very hopeful!!
                                                                                          MarkR
                                                                                          Participant
                                                                                            Mike
                                                                                            Great news that the Opdivo has been working over the last few months before you even started the trial. Really hoping this works out for you and you get a great result!
                                                                                            Best wishes
                                                                                            Mark
                                                                                              MelanomaMike
                                                                                              Participant
                                                                                                Maaaark! I know man! I was like “what?!” My tumor shows no Mel active cells!? I was blown away! I immediately thought of my last dose of Opdivo (June 2019) and gave thanks to him (assuming meds have a gender) an old friend gave me one last surprise of tumor death! Hell ya! If i could kiss someones bag of Opdivo i would!…well Mark, lets see what happens, this trial seems promising and im hopeful! Hope your good?
                                                                                                MarkR
                                                                                                Participant
                                                                                                  Still carrying on with Nivo but can feel lumps in my arm are getting bigger. Your news has spurred me on to stick with it until December but then I am hoping for TILS. A trial has just opened up at my hospital so I just hope I can get on the trial. It doesn’t look like your trial is available in the uk which is a shame as it looks promising
                                                                                                Linny
                                                                                                Participant
                                                                                                  I am so glad you sought out Dr. Hamid! Having a one of these rock stars on the front lines with you makes a helluva big difference. Hopefully you’ll get that left side tumor out soon. Praying that the Opdivo is working its magic on that nasty Sigmoid thingie. Besides, whatever the Opdivo may have missed, this new bug juice may just finish off for you.
                                                                                                    MelanomaMike
                                                                                                    Participant
                                                                                                      Sister Linny! Thank you so much, you know like myself, fighting this crap for over 10 years somethings gotta give! And it will!!! We are Warriors!!.. im amazed about my now dead (or dying) tumor! Im blessed….
                                                                                                    lkb
                                                                                                    Participant
                                                                                                      Mike, what does your dead tumor look like on your latest CT scan? I ask because my PETCT report says a lesion is “resolved,” while the MRI report says it’s bigger.
                                                                                                      Lucygoose
                                                                                                      Participant
                                                                                                        I’m so happy the trial combo got the marines to the beachhead! You are one bad ass warrior!
                                                                                                        Scooby123
                                                                                                        Participant
                                                                                                          Go mikey, glad you have turned a corner now kick arse. Excuse my French lol. Keep up the good work my friend .
                                                                                                          Scooby
                                                                                                          Dympsd
                                                                                                          Participant
                                                                                                            Good stuff. Wishing you every success
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