Kleo

Well they are starting me on Taxol, Carbo, Tecentriq, And Avastin. I mean...that's ALOT! they say chemo can't get to the brain supposedly because of the blood-brain barrier. And the immunos all work with PDL1...which I apparently don't even have. Soooo....am I taking all this just for fun or what!?? LOL Bob I'm soooo glad you are doing good on this durva! I think it just all depends on what markers ya got... or don't. 😉 Eagle...I can see the pathology report so I see where they actually tested for the genes...BRAF and EFGR and ALK and all that......but I still can't find the part about PDL1. Doc just TOLD me I don't have it...I haven't actually seen it. I'll ask tomorrow. Anybody wanna come shave my head????? I already half bald anyway 🤣

Hi Durvalumabers! I have been extremely MIA. but I was kinda busy....LOL Well unfortunately, the Durva ended up NOT working for me. Found out I have NO specific markers... no PDL1...so it did nothing. Dang it. Started having really bad headaches...terrible. Went to ER and they found I was growing tumors in my head. Did a Craniotomy to get one of em...some more Radiation on the other stuff....and now I start yet another chemo/immuno on Tuesday. Blehhh…. ...on a positive note...my lung/chest cancer has cleared up nicely! 🤣 Hope everyone here is good!

Hiya Fellow Durva folks! Anybody miss me? 🤣 How's everyone doing? I started working again...supposed to be part time but...well...they keep increasing my hours. LOL Doing much better now...back at my durva infusions. Caught that nasty bug that was going around but a quick dose of antibiotics fixed it. All the muscle pains in my side and back went away with the steroids. Now I just have a sore shoulder thing. I'm looking into physical therapy for that I guess. Doc says it's just me...not cancer related. I get the weirdest stuff. 😁 Hope everyone here is doing good! I don't get to drop in as much as before with all the working. Meh

Hi My fellow Durva people! Saw my onc yesterday. Looks like she's decided that ALL the activity in the scan...the ribs too...is inflammation. All because that one lil nodule showed inflammation in the biopsy? Seems presumptious to me but....whatever. Another stronger round of steroids for me...yuck. Then I will resume the durva. I do have another MRI scheduled for the end of January so...will see what that says. I have still been having weird muscle and joint pains...they kinda move around week by week. Could be treatment/inflammation related (as doc thinks). Could be cancer related. Could be old age related! Who knows man I get weird stuff all the time. How's everybody here doin? 😁

I agree Eagle...it should be just SOP at this point to get the biomarker testing right away in my opinion. I've now had 2 biopsy procedures and STILL did not have biomarker testing! 🤨

Ok....OWWWWWW! That one hurt! And even though I was on all the drugs...I still said...OWWWWW. LOL Felt like I was in Pulp Fiction where they stab Uma in the chest.😯 Doc just put me on steroids...my whole shoulder and arm are on fire now. Plus my chest where they stabbed me with the needle!! Didn't sleep much last night. Everything hurts. Oh and biopsy results are in...negative. Not cancerous. 😀

I had the bronchoscopy. They knocked me out for that. I had the fentanyl for the port installation. I was awake... or so I thought...for that. Really I must've passed out because it was like I laid down, the put a blue drape over me.... and the guy said...ok you're done. Huh? But I barely got on the table! LOL

No way man they better knock me completely out! Yeow!

Roz...that's exactly why I asked the doc about it. They didn't mention the size of this in the pet scan-the active node that they are going to biopsy- so I wondered if it was big enough that they could get a sample from it. I guess it is! 🤨 Sooo...who has had the needle biopsy on a lung? Doesn't that puncture your lung though? Wonder which way they'll go in....front or back? Guess whichever way is closest..? Will they knock me out? Yikes.....this is some freaky stuff. Please let em knock me out... LOL

Upper left lobe. There's 2 new nodules in my upper left lobe and 2 in my right. Only that one registered on the activity scale though.

Roz- this biopsy is just for the new nodule that recently showed up. It's not very big I don't think...and they didn't report a size measurement on it. I asked the doc if it was big enough to get a sample and she said yes so....we will see! My first biopsy via bronchoscopy of my lymphnode said adenocarcinoma.

See!? That's a lot for your system to take all at once imo. I think your poor system was like WHAAAAA.....?? Well my doc postponed my durva treatment. Didn't get it today. She only suspended this one treatment pending the results of my biopsy the 27th. She's not totally convinced this isn't some post treatment activity she said...because the activity is relatively low. And EWWW it's a needle biopsy this time! Better knock me out for this! Yikes.😨 She seems relatively unconcerned about the glowing rib. Said radiation would take care of it. Well ok then. LOL

True Bob I'm sure that's likely the case. I doubt my radiation doc would do that without consulting the onc. first. Bah....hate waiting for answers. I'm too impatient for this. LOL

Just got a call from the radiation doc...she's scheduled a biopsy for me of the new nodule for Dec. 27.. Kinda weird my radiation doc did that and not my oncologist.... I haven't even seen my onc yet! 🤨

Just got in from radiation doc. She said likely I'll have to do another biopsy on the rib that's lighting up. Said she will get with my onc and they are going to take it to the tumor board but she may want to try stereotatic radiosurgery on my initial tumor. Didn't think you could do radiation again to the same area but what do I know. 😕 Now I gotta wait to see onc on the 19th to see what the plan is now. Que sera and Fa La La La La!

Yikes! Yeah unless it gets real bad...I think pass!😫

Opal...I've had prednisone before and it didn't bother me much. Everyone must react differently! Well heck I wish you could get your infusions lined up with ours...then we could be durva TRIPLETS!😂 Heehee. I go tomorrow to the radiation doc. She'll have the recent PET results. Really though I'm not even sure that anything can be done at this point but watch and wait. None of this new stuff is big enough to biopsy I don't think. Dangit I wish they'd done the biomarker testing in the first biopsy. 😕 Bob tell the doc you can't suspend durva because it'll mess up our treatment twin schedule.🤣

Opal I'm glad you got to resume your durva! Hey that's a possibility that the rash coulda been from flu shot combined with treatment. Maybe freaked out your system! Well now your treatments are opposite weeks from ours. You go Thursdays? Bob and I have somehow inadvertently synched our treatments...( Twinning. lol) We get them on Wednesdays. The next one is the 19th.😂 I have some cough too. Mine's only in the mornings for a bit after I first get up. Then it goes away the rest of the day. I'm watching for anything new or weird. I guess pneumonitis woulda shown up in the pet or xray though. Wouldn't it? So Bob...are you on an antibiotic now too or just the cough meds?

Eagle I do get copies of all my scans. I get them before the docs do sometimes I think! LOL But I live next door to the imaging center so it's pretty easy to walk over and get them. While I'm waiting to find out doc's interpretation of results, I'll just focus on the positive...the tumor has shrunk significantly. NONE of my lymphnodes are showing any activity anymore. It's the cancer cha-cha. 😁

I always do this...I get my scan results before I see the doctor. That's bad really because then I interpret them myself! LOL Really you aren't even supposed to do a pet scan for 4-6 months post radiation because it can give false positives. Mine is slightly early...my 4 month mark is the 15th. I may have been prematurely PET-ed.😜 So I could be freaking out for nothing here. Could be just post treatment activity...who knows. Wouldn't be the first time I overreacted. Remember in chemo when I got thrush & thought I was turning into a zombie? 🤣 Bob how many durva's have you had now? I'm only at 5 so far. Opal...have you resumed durva treatments?

Bob are you doing CT scans or PET scans? I look great in the CT's! Tumor super shrunk and nothing else looked bad. Kinda bombed that PET today though. Dang it. 🎵*whistles dixie"🎵

I see radiation doc on Monday but not sure she'll know anything. I see oncologist on the 19th. I kinda expected the right side to show something though after that pain I had. Could be cancer starting in my ribs... or could be inflammation I guess. It's the same general area that my last PET in May said had a very small uptake...they suggested it was post traumatic change...whatever that is. 🤨 I can't worry bout those new little nodules yet. 3 of em have no activity sooo....... Not gonna sweat the little sh*t. LOL Will update when I get with the onc.

Dang Bob! I'm glad they got you sorted out. How ya feelin now? Did they offer an antibiotic? Or just the cough meds...? Sounds like your tumor is having a bit of a pneumonitis- like temper tantrum...LOL Well I did my pet scan today...results are in. I'm not thrilled. FOUR new nodules. FOUR! Only one nod shows uptake- 3.3. Tumor shrunk alot but still shows uptake 3.6. And now a new spot on my right ribs...uptake 4.1....right where that dang spasm was too!😖 Does this mean my Durva isn't working? Ugh....what the heck man. 😢

Got my pet scan appointment....Dec 7th! Now I'm gonna do the scanxiety thing for a week....🤨

I didn't get no durva gift basket! Man Bob you get all the goodies! 😁 I haven't gotten a rash or even itching all that much. I did notice my skin is extremely dry though. Back spasms have stopped and now it's just sore muscles...I can handle soreness just not that spasming crap! My doc said I get a pet scan next month. Tis the season to get pet scanned...fa la la lala....🎄🎅