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My CT Scan Report just In
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My CT Scan Report just In

› Forums › General Melanoma Community › My CT Scan Report just In

  • Post
    • September 21, 2018 at 4:57 pm
    MelanomaMike
    Participant
      Well, deep breath, as i was typing to you all right now this morning, like i do every morning, my Oncologist calls in to tell me my scan revealed Not So Good News, right lower lobe (Lung) tumor has increased now to 5.2cm and basically all the otherones have not vashished but not grown either, the one on the right (the 5.2 one) is the strong BASTARD of the group..DAMNIT! she said my treatment will be postponed today & shes sending me back out to Kaiser Riverside to see their specialist to talk again..comon’ now! Somethings gotta give here, time is moving fast!…gunna go sulk for a few minutes, ill be back later, ill head over to pick up my CT Report later, i guess they cant Email it only Fax & i dont have a machine…love ya guys..Mike
    Viewing 17 reply threads
    • Replies
        • September 21, 2018 at 5:40 pm
        Coragirl
        Participant

          Well poop! At least there is nothing new. I know you are frustrated and feeling down. Ask your oncologist about radiation, have you tried that yet? My husband had radiation for the tumor in his lung that grew. We don't know if it worked yet we will find out in a few weeks. Ugh I hate cancer! I'm thinking of you, don't give up hope there are still options. You can beat this.

            • September 21, 2018 at 7:59 pm
            MelanomaMike
            Participant
              Hi Amie! I was thinkin the VERY same thing, Radiation!, our phone call was brief so, we didnt discuss our next plan of attack, i see another Onco Oct 5th..thanx Amie!!
            • September 21, 2018 at 6:09 pm
            gopher38
            Participant

              That blows.  Time to decompress (for me, it'd be glass of whiskey or cognac), and then huddle with the onc to come up with next steps.  In my thoughts.

                • September 21, 2018 at 8:02 pm
                MelanomaMike
                Participant
                  Hahaha! That was funny! I sure wish i could get loaded right about now, as ive stated before, i have a few years sober so, but, gettin loaded cant be in my cards along with the Melanoma game, id be a mess! Lol…Mike
                • September 21, 2018 at 6:14 pm
                RichInLife2
                Participant

                  Mike, sorry to hear about this new bump in the road. I've just hopped on the melanoma rollercoaster, but I've always enjoyed the advice and support you've shown on this forum. I don't know enough to give advice, but I'm pulling for you, man. Good luck!

                   

                    • September 21, 2018 at 7:57 pm
                    MelanomaMike
                    Participant
                      Thanx Rich! Im in the same boat as far as knowing alotta bout’ our shared desease, i try to absorb what im able to but, i find my stress level is lower the less i play into it! Thank You for your support, all of you…Mike
                    • September 21, 2018 at 6:54 pm
                    marta010
                    Participant

                      That sucks.  I can't remember if you are Braf + or not.  If you are, have you tried the Braf/Mek combo? Hope your docs come up with a plan soon!

                      Ann

                        • September 21, 2018 at 7:53 pm
                        MelanomaMike
                        Participant
                          Hi Ann, thanks for your support, im not sure about the Braf or not, would my CT Guided biopsy report show that? Or just my latest CT report? I imagine the needle biopsy would show if i was Braf+,or not…ill find out…Mike
                        • September 21, 2018 at 7:07 pm
                        Savymoo23
                        Participant

                          Well CRAP!!! That’s totally lame! You’ll beat this thing! Also totally random, do you live in California? 

                            • September 21, 2018 at 7:50 pm
                            MelanomaMike
                            Participant
                              Yep, ive been held captive here in California since 196, but ill figure out a way to escape! 🙂 (Van Nuys Calif)
                              Thanx 4 your reply, itll work out somehow!…Mike

                              • September 21, 2018 at 9:50 pm
                              MelanomaMike
                              Participant
                                It shoulda read “1968” since iv been held captive here in Calif! Lol…
                                • September 21, 2018 at 9:51 pm
                                bjeans
                                Participant

                                  I figured you were doing great if you were really there since 196.

                                  • September 22, 2018 at 12:49 am
                                  MelanomaMike
                                  Participant
                                    Hahaha! I would be the Eldest here at MRF! LOL..;)
                                  • September 21, 2018 at 7:52 pm
                                  smiller
                                  Participant

                                    I did not want to read this (as I am sure you didn't want to hear it )!  My husband has his next scan Tuesday (25th).  The scan three months ago showed all tumors shrinking but he had two very small lung nodules that showed up. Nothing had been seen on lungs before, so this was a bit of a surprise.  He made it through three rounds of opdivo/yervoy before having to stop because of side effects.  He stated at that time (June 2017 ) no more treatment of any kind.  I am in awe of you having continuing on with treatment in spite of the difficult time you had with the combo treatment.  So sulk for a few minutes–take as long as you need–know that you are an inspiration to me and I look forward to your posts.

                                    Jim's wife

                                      • September 21, 2018 at 8:15 pm
                                      MelanomaMike
                                      Participant
                                        Awww! Thank you Jims Wife! (My dad was named Jim), ya its been a journey with all this Immunol meds, especially what the Yervoy did to me 6 days into it after my 1st infuse!! I know it was the Yervoy, Opdivo seems innocent & sweet haha and all the ” Gland” problems it created…..
                                        Im just surprised it didnt work like it should, this is 3 Immunol drugs (Keytruda #7 rounds) & (Ipi/Nivo #5 infusions, but only 4 of the Ipi) that hasnt panned out for me, just my luck! Aaarrgghh! Im good though, im settling down now, wife & i hugged it out & were focusing on Oct 5ths visit to Kaiser in Riverside…Plan C is in my future!!
                                        Thanks again sis, Mike…
                                      • September 21, 2018 at 8:02 pm
                                      khubes
                                      Participant

                                        Hi Mike!  Sorry to hear about your CT scan.  Maybe you want to check out some other drs in the area? My husband also has Kaiser insurance — we go to Dr. Rodriguez at Kaiser Sunset.  He is AWESOME!  If you can, I'd try to get an appointment with him; he's been our primary oncologist with Kaiser since day one.  Also, if you can, I'd recommend getting a second opinion with Dr. Hamid at The Angeles Clinic.  He's been spot on with all of my husband's treatments and has saved his life more than once.  🙂  I'd be happy to chat with you more about our experiences!!  Please feel free to message me any time.  

                                        Best,

                                        Katie 

                                          • September 22, 2018 at 1:10 am
                                          MelanomaMike
                                          Participant
                                            Hay neighbor! Huh! We have a few here from Calif, A few Southern Cal folks to!..You brought up a point that iv been meaning to look into, the whole trip to freakin Riverside to see their specialist Dr Jang (i believe is his name) when im closer ALOT closer to Los Angeles area (im in Van Nuys)..im gunna go see this guy again & pick his brain & go from there (Oct 5th), i know my lovely oncologist Dr Pakanati is trying her best & she warned me along time ago she does not major in Melanoma, iv always been the one to really convince her for me to be her first Melanoma patient & lets do the latest best Immunol Therapies Pembro, Ipi, Nivo and we did! But, with no such luck & that’s not her fault so, its all good, feces happens.., Off to KP Riverside & will go from there…thank you Katie, and tell yer hubby whats up homeboy! Lol..thanks sis.
                                          • September 21, 2018 at 8:32 pm
                                          GreggL
                                          Participant

                                            Sorry to hear about this Mike. I remember getting the phone call telling me I had a tumor on my right lung. I was in Wal-Mart looking at fishing lures and all of a sudden I didn't feel like fishing. Hopefully this specialist or your oncologist will come up with a great plan of attack. Keep your head up. 

                                              • September 22, 2018 at 1:15 am
                                              MelanomaMike
                                              Participant
                                                Haha! I needed that GreggL! The whole not wantin to fish bit, ya, its not the news we wanna get but, and i know i shouldnt ” Expect” bad news like i stated i do, im very possitive actually & happy go unlucky! Haha…Oct 5th is my next step seeing that Dr. So, at soldiers & lets dig in for the night..Mike
                                              • September 21, 2018 at 9:43 pm
                                              bjeans
                                              Participant

                                                That sucks beyond big time, Mike. But after some well deserved sulking and even a pity party – and cat or dog cuddling doesn’t hurt – you *will* beat this stupid yet persistent beast. BTW, a friend and her husband lived in CA for a while and had  Kaiser, and he had a badly misbehaving cancer (not melanoma). They eventually got permission to go outside of Kaiser to see a top dog, so something to think about, and I see that khubes has an awesome (with Celeste !!!!s) doc right at Kaiser.

                                                  • September 21, 2018 at 10:11 pm
                                                  kandx
                                                  Participant

                                                    I'm sorry to hear this news, too, Mike. I'm newly diagnosed and have been reading posts and archives and have really found the support community here a bright spot among everything else. I appreciate your support to the group… this is my first post/comment and it's just to say there are even more people supporting you through this next blip in the plan than you know. -Kelly

                                                    • September 22, 2018 at 1:28 am
                                                    MelanomaMike
                                                    Participant
                                                      Hi bjeans! Thank you for your support, i cannot imagine us NOT having our support group, you all are the best! Now i know how sister Bubbles felt on her return home to find Her outpour..
                                                      Yes, Katie (khubes) kicked me indah butt on the whole Kaiser in LA (Sunset), plus alot closer to!. Oct 5th ill see this dude “again” & absorb his recommendation & go from there, gettin a BRAF test (if it hasnt been done on me already is best) and maybe Radiation from here? I dont see me doing any interferon type crap, if what ive done so far isnt working Pembro, Ipi & Nivo that crap sure in hell isnt gunna!
                                                      Thanks bjeans, im getting past the sulking, fairly quickly actually!tommorow morning i should be fine! ;)..Mike
                                                    • September 21, 2018 at 10:02 pm
                                                    Jahendry12
                                                    Participant

                                                      Like the others said, glad nothing new and stable is good.   Hang in there Mike.  Sulk for a few and then pick yourself back up and move forward. 

                                                        • September 22, 2018 at 1:38 am
                                                        MelanomaMike
                                                        Participant
                                                          Hi Jahendry12! Thank you for your support! Means alot..just to clarify, “most” my tumors have not done anything substantial except one, the BIG DADDY FROM CINCINNATI, the 5.4CM Mel Monster! He was 2.4CM last May 2018 (did some digging) Right Lower Lobe is his cave…other then that i am “stable”! It hasnt really effected me much, i get swollen legs, alot of water or maybe its “lymphatic juice” in my elbows/knees iv noticed recently, but im ok, breathing seems good…:) Mike
                                                        • September 21, 2018 at 10:17 pm
                                                        Mark_DC
                                                        Participant

                                                          Hi Mike — am sorry about the news but hope you will be alright.

                                                          On BRAF — thats something they need to test your tumour for. I would have thought they would have done this a long time ago and used inhibitors as the first line of attack. Definitely check! If you are BRAF positive that would give you some extra approaches.

                                                          I am not sure how much larger is the right hand lung tumour – I hope not too much because if not then the rest is "OK". I second khubes advice – she may have a good Kaiser doctor that you can see plus also check out Dr. Hamid as he has a great reputation. It may be time for clinical trials and if so then Dr. Hamid would be well connected to them.

                                                          Am sorry about all the waiting you had to go through. I hate phone calls from my oncologist – they almost always mean bad news (though you seemed to be expecting yours, its the unexpected ones that freak me out). The scan process is a pain but we have to try our best to chill.

                                                          Make sure you know your BRAF status (I think they send the tumour away for testing), check out the other docs for second opinions, and I hope there are clinical trials available too.

                                                          Good luck and best wishes

                                                          Mark

                                                            • September 21, 2018 at 11:36 pm
                                                            happyfeet123
                                                            Participant

                                                              Hi Mike-so sorry to hear about your CT scan.  You have so many fans pulling for you.  I find your posts entertaining and they always bring a smile to my face.  You even got Ed to crack a joke.  This is a little bump in the road and we are all here for you.  

                                                              Now, might be a good opportunity for a second opinion. 

                                                              Wishing you all the best my friend.

                                                              Tammy

                                                              • September 22, 2018 at 3:24 am
                                                              MelanomaMike
                                                              Participant
                                                                Taaaammy! Thank you so so much, ive been replying back to folks all day giving Thanks, to be honest, by doing so, it has helped me since my phone call this morning from the ol’ Oncologist!!, i didnt realize folks found me entertaining! Hell! i thought i was just an average patient suffering from the same desease! It makes me happy to know this, if you only knew..Yep, good ol’ Ed!, i love him to death and try to absorb his knowledge, were all lucky to have him here, or should i say ” Were lucky to be here with “him”…Thanx Tammy…Mike
                                                                • September 22, 2018 at 12:07 pm
                                                                bjeans
                                                                Participant

                                                                  Average? As if!

                                                                  Designated group picker-upper, smiler inducer, etc. 

                                                                  • September 22, 2018 at 4:12 pm
                                                                  MelanomaMike
                                                                  Participant
                                                                    🙂
                                                                    • September 22, 2018 at 2:42 am
                                                                    MelanomaMike
                                                                    Participant
                                                                      Brother Mark! Thank you for your support, good Lord! I was not expecting the out pour! Yes, khubes comment on LA’s Kaiser & the clinic sounds good right about now, iv been use to taking the drive out to Riverside (roughly 100 miles round trip) to their specialist a few times so far since 2008 when i was 1st diagnosed so, i guess its because “my” oncologist is more Buddy Buddy with them out there, maybe she worked there along time ago & is just throwing them a bone haha (at my gas money expense that is!) :)…
                                                                      Thanx again Mark, have a great weekend!!…Mike
                                                                    • September 21, 2018 at 11:37 pm
                                                                    MovingOn
                                                                    Participant

                                                                      I know you are tied to Kaiser and that they are good. However, you may also want to get a 2nd opinion at UCLA or USC if Kaiser does not recommend radiation. I believe one of the melanoma specialists at USC is a radiation guru (I’ll look up his name).

                                                                        • September 22, 2018 at 2:56 am
                                                                        MelanomaMike
                                                                        Participant
                                                                          Hi MovingOn! Thank you so for your support, means alot! Im gettin over my sulking rather fast, like ive said, ive been so use to everthing from Re-Occurences (7 in total so far since 2008) to a surgery site “opening up” on me (after the staples where taken out, that was fun) and now 3 different meds havnt worked so, im use to the Bad News side of Melanoma, i know im not the only one, some far worse, some rougher..But, I did hear that i was still alive so, that is my bottom PLUS! I mean comon’! Since my diag in 2008 thats 10 years of staying away from the Coroners Office! That says something…hugs, Mike
                                                                        • September 22, 2018 at 1:52 am
                                                                        KellyH
                                                                        Participant

                                                                          Oh Mike….definitely not the news we were all hoping for you.  But the fight is not over….and you are stronger than any melanoma cell!!!! I have seen so much love and support from you to so many people on this board…people you have never met….people you may never meet, and that kindness will never go unrewarded. Your time is coming…I know it!!!  hang in there!!!!!  

                                                                          Kelly 🙂 

                                                                            • September 23, 2018 at 11:32 pm
                                                                            MelanomaMike
                                                                            Participant
                                                                              Thank you Kelly (that was my cousins name, havnt seen her in like 40 years)
                                                                              Im happy i can send out love, cheer & what “worded” sense of Hope i can, God only knows i have the “Time” nowah days! Ya know, being on Disibilty and all..Its my WORLD right now & its our (my) support system.. thanx sis! Means alot…
                                                                            • September 22, 2018 at 2:01 am
                                                                            Ridingaroundwith27Jennifers
                                                                            Participant

                                                                              Oh no Mike!  Definitely not the news we wanted to hear.  Please let us know how things go.  Sending you good wishes.  

                                                                              Jennifer

                                                                                • September 23, 2018 at 11:21 pm
                                                                                MelanomaMike
                                                                                Participant
                                                                                  I know right!!?? JeezLaWeez! Oh well, had the weekend to get over the “once again” BadNews & come Monday i think im gunna cancel my appt that i was to make (wich i did per my current oncologist) out at Riversides Kaiser, for one, to far, for two, iv already seen him once before last year before i first started this whole Immunal Therapy gig (before Nov2017) and i got a kick in duh butt from one of our sisters here, i wanna say Khubes (Katie) her hubby goes to Kaiser in Los Angeles on Sunset & apparently his Onco kicks butt! Dr Rodriguez i believe so, gunna try & reschedule to see him, That Kaiser is like 10 miles or so from me! Wish me luck! Ill keep you’all posted! 😉
                                                                                • September 22, 2018 at 2:01 am
                                                                                Ridingaroundwith27Jennifers
                                                                                Participant

                                                                                  Oh no Mike!  Definitely not the news we wanted to hear.  Please let us know how things go.  Sending you good wishes.  

                                                                                  Jennifer

                                                                                  • September 22, 2018 at 10:54 am
                                                                                  Bubbles
                                                                                  Participant

                                                                                    Oh, Mike.  I'm sorry!!!  This shit ain't for sissies!!!  But, works out (in psycho melanoma land!) cause you ain't a sissy!!!  Hang tough.  Love, celeste

                                                                                      • September 23, 2018 at 11:09 pm
                                                                                      MelanomaMike
                                                                                      Participant
                                                                                        Bubbles! Thank you so! Im trying to be! Actually i think because of my Happy Go Unlucky attitude, im able to endure this a little easier then if i was DNA’d as a SadSack! Thank you again sister, im so amazed at what we all have here at MRF, really, i boast all the time about our group…;)
                                                                                      • September 22, 2018 at 3:26 pm
                                                                                      lkb
                                                                                      Participant

                                                                                        Hi Mike, let me add to the chorus. Pulling for you all the way! As for that 5.2 bad boy, I have words that do not come from children's books, as Ella Fitzgerald might say. Glad that the rest have not grown. I will be getting a second/third opinion from Dr. Ribas at UCLA because of some videos in which he/his patients spoke about melanoma treatment. He was willing to try something unusual (but def legitimate) and has had success. Someone to consider? Sending lotsa love your way.

                                                                                        Lisa

                                                                                          • September 23, 2018 at 11:49 pm
                                                                                          MelanomaMike
                                                                                          Participant
                                                                                            Hi sister Lisa!, thank you for your support, means alot! 😉
                                                                                            So I gather your also a fellow SoCal rez? If so, im sittin’ here in good ol’ Van Nuys!.. Im gunna check into that doc yer mentioning, curious now! Lol..thanks for the love & the “lead”!..
                                                                                          • September 22, 2018 at 5:00 pm
                                                                                          WithinMySkin
                                                                                          Participant

                                                                                            So sorry to hear this, Mike!! Thoughts and prayers (and fuzzy purrs) headed your way!!

                                                                                            Lauren

                                                                                              • September 23, 2018 at 11:55 pm
                                                                                              MelanomaMike
                                                                                              Participant
                                                                                                Lauren! Not only my MRF sister but fellow Feline sister! Whats going on!? Thank you so for reaching out, means alot…we will find a treatment to Halt this monster! I mean, all my treatments “technically” havnt worked they way they should have but, each lil’ tumor that did shrink or disapeared or “didnt do anything” is still “Working” in my book!.. Ill keep you all posted believe me! 😉
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