Charles Posted June 20, 2019 Share Posted June 20, 2019 hey Barb you're right but it is what it is though right? Time has come for an assessment because toxicity has come into play and we must deal with that before trudging on. I am already a type 2 diabetic and I get dizzy when glucose levels are too low (under 90) or as long as they don't stay too high (over 200) for too long. The Imfinzi did affect levels and the Prednisone really makes them go up so I am monitoring more closely also, but onward we go. Will continue to post and monitor here though. Charles. Rower Michelle and Barb1260 2 Link to comment Share on other sites More sharing options...
Kleo Posted June 20, 2019 Share Posted June 20, 2019 Barb....I never got dizzy either. But I did have really bad muscle/joint pain. Hi Charles! Sounds like the durva doesn't play well with you at all either! Gee whiz!😣 Now just to pass along what my nurse told me... Supposedly they've figured out that the durva does not do well with the prednisone. Or any steroids really...at high doses. But especially the durva and prednisone. I was on all kinds of steroids for the muscle joint pain. Big ol doses of prednisone! Now whether she has the right info...I don't know. Don't wanna start nurse rumors! Something for people to look into though. And whether that had anything to do with my durva not working for me...who knows. could just be I didn't have the PDL. I shaved my head! I look like a q-tip.😁 Charles 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 20, 2019 Share Posted June 20, 2019 Hi Kleo. The Durvalumab/prednisone relationship has seen better days. I think the max daily dose they came up with is 10 mgs. If I could take that daily to ward off the bad stuff I would but I don’t think they would do that yet. We are still guinea pigs on this stuff. Sorry about your hair. Mine is not growing in too fast. I didn’t order the button for my back to be able to pull the hair out of my scalp🤪 Kleo and Charles 1 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 20, 2019 Author Share Posted June 20, 2019 Charles Sorry to hear about your condition it was about the same time infusion#8 or 9 that i had to go to ER major cough and they could see inflammation on the lung, They held off on predisone and i noticed on my next blood work my white bloods cell count went off the charts.Still have chest infection that shows on the CT the doctors are aware.. Stay the course Bob Charles and Kleo 1 1 Link to comment Share on other sites More sharing options...
BridgetO Posted June 20, 2019 Share Posted June 20, 2019 Hey Charles, You've really been through it! I'm pulling for you. Hang in there. Kleo, when I lost my hair, I thought I looked like an old baby. I also thought if hair loss were the worst of it, chemo would be a breeze. Charles and Kleo 1 1 Link to comment Share on other sites More sharing options...
Charles Posted June 20, 2019 Share Posted June 20, 2019 Thank you all for your kind words and I will stay the course if the course remains stayable. Right now, as far as I know, the maximum dose of prednisone is 1mg per kg. of body weight per day which I am on, so for me, that amounts to five 20 mg. tablets per day for 3 days, then four 20mg tabs per day for 3 days, then three 20 mg. tabs per day for 6 days, then 2 tabs for seven days, then 1/2 tab daily from then on. I am on day three of the five tabs and so far have a little more energy and a little less fatigue so have been able today to do a little bit more without having to collapse into a 6 hour nap to recharge for a short time, so that is good. Eye and other thangs still going on though so rooting for no permanent damage anywhere, time will tell. As far as the prednisone stopping the Imfinzi from doing what is was "designed" to do, I don't think it can, just slow it down according to dosage and time given the prednisone. will talk more later... thanx again everyone, Charles Tom Galli 1 Link to comment Share on other sites More sharing options...
Jane Lee Posted June 21, 2019 Share Posted June 21, 2019 Hi Charles My understanding of the predisone and durvalumab mix is that the two drugs counteract each other, hence neither work well together. (I'm not sure exactly how that works) . However my Onc. has told me that the Durvalumab stays in your system for up to six weeks. Whereas the predisone leaves you system very quickly. Because the predisone is an anti-inflammatory it is often better to get whatever that it is being used for under control in the first instance. The issue is that the predisone is a steroid and is so addictive. I've been told that if I have to go on the predisone again that the Durvalumab will cease completely. I don't know what happens after that. I am going to fight tooth and nail against ceasing the Durvalumab as I am fully aware that the Durvalumab is actually working for me at present so I don't want it to stop. Kind regards Jane Lee Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Charles Posted June 21, 2019 Share Posted June 21, 2019 Hello Janie, I fully believe the durva is working for me also as I have jpegs to show tumor shrinkage beyond the range of all the radiation and chemo treatments I underwent up to December of last year, of which I only had inflammation side effects from. I feel and have felt the same way you do about sticking to the Durva no matter what but I'm afraid that I myself don't have much of a choice with being delayed, hopefully temporarily, from the treatments because of the severity level of all the side effects I am having , as there are guidelines laid out in each country for all those depending on what country you are in. All I can do at this point is agree or disagree with it. Sure, I just hated to be witheld from treatments for awhile but I am still scheduled to take another one in 2 weeks depending on blood level counts, severity level of any remaining side effects, and if I get a successful taper down on the prednisone to an acceptable level to get another treatment, I will have to wait and see but I do fully intend to resume treatments asap. Thanks Janie........Charles Link to comment Share on other sites More sharing options...
Tomm Posted June 21, 2019 Share Posted June 21, 2019 Charles, really sorry to hear you are having a delay in durva with all your side effects. It sounds like you have the will to withstand the obstacles it's throwing at you and the knowledge that it is helping. I think it's important to be an optimist like you and Kelo..It helps me to stay positive thanks for that. Charles 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 21, 2019 Share Posted June 21, 2019 Jane-I’m wondering why they would stop the Durvalumab if you take steroids again? I know people with autoimmune disorders that have been on it for years. I know it can be addictive but stopping treatment seems like it should be a last resort. Especially if it’s having positive results. Always something to question with this disease. Charles 1 Link to comment Share on other sites More sharing options...
Jane Lee Posted June 22, 2019 Share Posted June 22, 2019 Hi Barb The reason I will have to stop is that being on the Durvalumab is part of a clinical trial. Otherwise the cost is $180,000 (Australian per year). Because it is a 12 month clinical trial, stoppages don't count in the 12 month period. It is not 26 treatments (i.e. 26 fortnightly treatments) it is a strict calendar year trial. So the researchers can't afford to have people stopping and starting on it as it could skew their results. It is all the government was willing to fund so I guess to some degree I am in their hands and have to be grateful for small mercies. According to the research thus far, there has been two deaths because of patients who have had pneumonitis and been on predisone who have also been on durvalumab. So over here they are very cautious about patients having predisone when they are being treated with durvalumab. They also don't know when is the optimal time to stop the durvalumab i.e. is it six months, nine months, or 18 months. I hope this clarifies it a little more, I;m not a doctor so I hope I have explained it Okay. Given my partially collapsed lung I am concerned that on Wednesday the oncologist may put me back on the predisone but I am praying he won't. How are you feeling any way? I hope your feeling better. Kind regards Jane Lee Tom Galli, Robert Macaulay and Charles 3 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 22, 2019 Author Share Posted June 22, 2019 Hi Jane When patient has adverse toxity to a drug the doctor has a decision to make. Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted June 22, 2019 Share Posted June 22, 2019 Well Jane, anytime I can be of any assistance please ask and I will try to help...............Charles Link to comment Share on other sites More sharing options...
Jane Lee Posted June 22, 2019 Share Posted June 22, 2019 Thanks to all of you I feel so much better having people who are going through the same/similar treatments. It is such a relief to be able to express view/have discussions etc. with people who are experiencing similar issues. Thanks to you all I don;t feel so alone. My family is great and are very supportive but just hearing from you guys makes the fight worthwhile. Take care everyone. Kind regards Jane Lee Rower Michelle, Tomm, Robert Macaulay and 2 others 5 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 22, 2019 Share Posted June 22, 2019 Hi Jane. The fact that it’s a trial explains it. I’m feeling ok, thanks for asking. A little tired and the glucose levels have gone crazy twice now but not bad. Hope you are well. Tom Galli 1 Link to comment Share on other sites More sharing options...
Kleo Posted June 24, 2019 Share Posted June 24, 2019 This is off topic but I just gotta say it......this chemo/immuno cocktail is BLEHK!😣 Anyway...when I was on the durva...my biggest problem/side effect I saw was that it caused me joint and muscle pains in my back and arms. Sent me to the ER twice they were so bad. So now they are giving me this...Tecentriq stuff...and I'm having joint/muscle pains again..but all over. Even my legs! So how do I know if it's the immuno again or the taxol or whatever else they've tossed in my salad!? Too many thingies! I'm grouchy today....sorry 😉 Charles 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 24, 2019 Author Share Posted June 24, 2019 Kleo You sure get the most expensive drugs ATEZOLIZUMAB with the funny names.😁 Link to comment Share on other sites More sharing options...
Kleo Posted June 24, 2019 Share Posted June 24, 2019 5 minutes ago, Robert Macaulay said: Kleo You sure get the most expensive drugs ATEZOLIZUMAB with the funny names.😁 I think they are just tossing the dang alphabet at me! Here try this new Gerfloogerbaghin...it'll help. Robert Macaulay and Charles 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 24, 2019 Author Share Posted June 24, 2019 Kleo What you are receiving was just approved in Canada three weeks ago. Gerfloogerbaghin sounds Scottish Charles and Kleo 1 1 Link to comment Share on other sites More sharing options...
Kleo Posted June 24, 2019 Share Posted June 24, 2019 Haahaaahaaa! Bob you are so funny!🤣 Yeah they just approved that Tecentriq/ Avastin combo with chemo here. So that's what they are trying...even though I don't have PDL1😣 I'm gonna have a lil chat with my onc Wed. Don't feel like this is the right stuff for me. Robert Macaulay and Charles 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted June 24, 2019 Share Posted June 24, 2019 Grouchy is acceptable. Sorry about the pain. I’ve only had 4 infusions and I have pain in my foot joints occasionally which I had for years then it went away during chemo and radiation. Never figured that out Kleo 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted June 24, 2019 Author Share Posted June 24, 2019 Kleo Don't feel like this is the right stuff for me. I bet he will convince you otherwise. 😎 Barb1260 and Kleo 2 Link to comment Share on other sites More sharing options...
Charles Posted June 25, 2019 Share Posted June 25, 2019 Hey Kleo I'd try a hit of that Gerflooberglobbin over here but I'm still pixellating on the Prednisone, it sounds a little German to me though, somethin like Der Gooberflobbin is akickin se poopinhockin outen mein poopinhopper, but in all honesty and seriousness am sorry to hear about the pain with the new treatments, seems if it aint one tham dang it's another right? Kleo 1 Link to comment Share on other sites More sharing options...
Jane Lee Posted June 25, 2019 Share Posted June 25, 2019 Kleo sorry to hear you have so much pain. I'm on the Durvalumab and have joint and muscle pains also but I have always put it down to the hypothyroidism. I never realised it could be a Durvalumab reaction. Link to comment Share on other sites More sharing options...
Kleo Posted June 25, 2019 Share Posted June 25, 2019 Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva. That's just ME though...I'm pretty weird! 😏 Tomm, Charles and Barb1260 3 Link to comment Share on other sites More sharing options...
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