Kleo Posted June 16, 2019 Share Posted June 16, 2019 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! Robert Macaulay, Tom Galli and MBinOregon 1 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 16, 2019 Author Share Posted June 16, 2019 Kleo I guess you were kind of busy with a little Craniotomy on the side and you were concerned about needle biopsy😀 .I have no idea about my specific markers bit late to find out now as i go for #22 on Wednesday this week and finish Durvalumab on August-14 then scan late August now the proof of the pudding is it working will come clear in the next six months. Did they say what type of chemo/immuno you will receive. ? There is always some type of setback in persons cancer treatment and as long as your getting treatment you will handle it. Bob Kleo 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted June 16, 2019 Share Posted June 16, 2019 33 minutes ago, Kleo said: . Found out I have NO specific markers... no PDL1...so it did nothing. Dang it. Kleo, Did they do the full biomarker tests? I think I would ask for another full test. It can be done with blood. https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/ praying for the best 🦅 Kleo 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 17, 2019 Share Posted June 17, 2019 Welcome Home Kleo! So glad to hear from you, however, sorry to learn about this update. You’ve been such an inspiration to me with steadfast spunk and determination. We’re all here for you. As Eagle says- prayer works. So here we go- a worldwide prayer from this circle of your family. Sending a big hug. Michelle Kleo 1 Link to comment Share on other sites More sharing options...
BridgetO Posted June 17, 2019 Share Posted June 17, 2019 Hi Kleo, I've been wondering what was up since we hadn't heard from you in a while. I'm glad you're back, but I wish is was with better news. You really were "kinda busy"! Whoo! Hang in there and keep posting when you can. We're all thinking about you and pulling for you. Bridget O Kleo 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 17, 2019 Share Posted June 17, 2019 Hi Kleo. I’m sorry to read that you have had to deal with this setback. But with your spunky determination you got this. My thoughts are with you. Stay tough Kleo 1 Link to comment Share on other sites More sharing options...
Kleo Posted June 17, 2019 Share Posted June 17, 2019 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 🤣 Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 17, 2019 Author Share Posted June 17, 2019 Kleo Anybody wanna come shave my head????? I already half bald anyway 🤣 Been there done that and it has grown back in my new style.😎 Kleo 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 17, 2019 Share Posted June 17, 2019 Definitely ask about the full panel biomarker. What if you had the rare ROS-1? Kleo 1 Link to comment Share on other sites More sharing options...
Tomm Posted June 17, 2019 Share Posted June 17, 2019 Hi Kelo, your positive attitude helped me make the decision to take Durvalumab. The posts you make offer all of us hope to keep taking what gets thrown at us and fight back with a forward attitude. I a few years ago when I was getting chem/radiation I also ate CBD/THC oil and killed 4 tumors with the combo. There is a lot of research and some clinical trials using CBD/THC for brain cancer. I did a google search and found a few links that offer hope. This link is from us gov. site https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5964193/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6200872/ a lot of articles from this search ..cannabis brain tumor drug hope CBD's Role in Beating Deadly Disease Uncovered in Blood-Brain Barrier Study https://www.inverse.com/article/55030-cbd-could-help-deliver-chemotherapy-drugs wishing you the best on your travels... Kleo and Rower Michelle 2 Link to comment Share on other sites More sharing options...
Kleo Posted June 17, 2019 Share Posted June 17, 2019 Hi Tomm! Thank you for the kind words! I actually have the license I can have the cannabis oils. I just don't like em. Oil tastes like crap. And I accidentally took one that wasn't CBD. I took a THC one. Ended up trying to make myself a Steak-Umm but got distracted because I thought my mayo looked like butter. Spent half the day staring and comparing... trying to figure that one out. Duh.... I don't do well stoned apparently.🤣 Rower Michelle 1 Link to comment Share on other sites More sharing options...
Tomm Posted June 17, 2019 Share Posted June 17, 2019 Kelo, I don't taste it, I put it in capsules and took it every 8 hours. If you keep taking it you will build up a tolerance and can take a larger does. Thc kills tumors too... keep us posted Kleo 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted June 17, 2019 Share Posted June 17, 2019 Tomm, While THC may provide pleasant sensations, I’ve not found scientific evidence that it effects lung cancer tumors. In fact the claim is THC kills all kinds of cancer and that would make it a miracle drug. Sadly there are no miracle cures. Stay the course. Tom Kleo and Robert Macaulay 1 1 Link to comment Share on other sites More sharing options...
Tomm Posted June 17, 2019 Share Posted June 17, 2019 Tom, no proof that chemo works for everyone but it does for some, there are some clinical trials on these that I know we all hope will find the way for all of us.. thanks for being here for us, you have been a great help to me with this site and your knowledge and personal life that you share . best regards,Tomm Link to comment Share on other sites More sharing options...
Kleo Posted June 19, 2019 Share Posted June 19, 2019 Well that 8 hour infusion was fun! Not......🤣 Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy! Tom....Hi! good to "see" ya! I just responded to TWO Tom's in one post. A Tomm-Tom.😎 I'm so talented. Robert Macaulay, Barb1260, Tom Galli and 3 others 3 3 Link to comment Share on other sites More sharing options...
Steff Posted June 19, 2019 Share Posted June 19, 2019 Kleo- Glad to see you have kept your sense of humor through all of this...Tomm-Tom (I truly lol'd over that!) Kleo and Tom Galli 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 19, 2019 Author Share Posted June 19, 2019 Kleo 8 hour infusion and i thought 6 hours was bad enough. 90 minutes now with Durvalumab total in and out there. Heading out in thirty minutes. Bob Kleo 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 19, 2019 Share Posted June 19, 2019 Hey guys. Either of you experience any dizziness? Infusion was Thursday, Friday was dizzy and also today. So difficult to say for sure if this is a side effect when it’s all so sporadic. Link to comment Share on other sites More sharing options...
Barb1260 Posted June 19, 2019 Share Posted June 19, 2019 That was meant for any Durvalumab. Should have been any not either. My brain is foggy Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 19, 2019 Author Share Posted June 19, 2019 Barb1260 Never experienced any dizziness at all Barb1260 1 Link to comment Share on other sites More sharing options...
Tomm Posted June 19, 2019 Share Posted June 19, 2019 Kelo the point of the links isn't about a cure from cbd/thc for any type of cancer but it's about CBD helping Chemo pass through Blood-Brain Barrier Study it sounds like your getting the kitchen sink thrown at you, hope you get some pizza out of it. Stay strong and please keep us post on your progress. Barb: no dizzy here but my fatigue increased on day 2-5 after and now OK .. Link to comment Share on other sites More sharing options...
Charles Posted June 20, 2019 Share Posted June 20, 2019 hey everybody, poster child for the side effect committee here, had to throw the towel in on imfinzi for about a month or so on tuesday, Onc was going to take me off permanently but I talked him out of it but I do agree I need a "halftime" break in all these s.e.'s. Have gained 30 lbs. since on, have experienced long lasting eye and vision changes with swelling for a couple months , weakness to the point of quick muscular exacerbation with loss of dexterity in hands with difficulty mouthing words correctly , debilitating fatigue, and liver enzyme counts way up threatening liver damage. went in for liver function bloodwork last week and levels came down a little but still up double what they were before. So far have had to have 3 unscheduled appointments and tests, 3 different lower dose prednisone scrips, 1 e.r. visit with abdominal ct scan, and 1 unscheduled full jaw to thigh ct scan by Onc and all this by number 9! Tme for some relief huh? YOU BETCHA! So now am on the max dosage of Prednisone (1mg per kg body weight per day with tapering for several weeks) treatments still scheduled but witheld and a brain M.R.I. scheduled. I asked Onc what the " antidote" for Imfinzi was just in case but got no clear cut answer but the dosage of prednisone I am now on for immunosuppression and some medication that sounded like bamaculahockie. Am hoping the prednisone restores me back to 'normality" rapidly and hope for no long term or permanent damage. This is the old " wrench-in-the-works" in plans for me but when I started this I knew the risks and set goals which I believe, with God's help, the medication was working on the cancer because lungs are better than before but that's all that is. I will walk up to the "final door' on this treatment with what is left of the cancer in tow but I will not knock on it willingly, and yay though I walk through the valley of shadow of death, I will fear NO evil, But I will recognize it! And that about sums it up, yep Link to comment Share on other sites More sharing options...
Barb1260 Posted June 20, 2019 Share Posted June 20, 2019 Good morning Charles. You certainly have had a bunch of stuff going on with this Imfinzi. Sorry it’s been so rough. Hopefully when you get through this and have a break you will be able to get back on the plan and you will have no issues. Link to comment Share on other sites More sharing options...
Barb1260 Posted June 20, 2019 Share Posted June 20, 2019 I’m thinking these dizzy spells is my glucose going crazy. I’ve been watching it off and on but yesterday it was all over the place. Monitoring more closely now. The lighthouse nurse agrees, probably going to turn diabetic. Yahoo, more drugs to take. Link to comment Share on other sites More sharing options...
Jane Lee Posted June 20, 2019 Share Posted June 20, 2019 Hi Charles My thoughts are with you I have had some slight ups and downs with the durvalumab and been on and off the predisone. At this stage, my lung has partially collapsed but they don't seem too worried about it, so I have taken the view that if the onc isn't concerned then I am not going to be either. I will keep you in my prayers and hopefully it will all work out okay. Kind regards Jane Lee Charles 1 Link to comment Share on other sites More sharing options...
Recommended Posts