Charles

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 😉
 
 

I think they are just tossing the dang alphabet at me! Here try this new Gerfloogerbaghin...it'll help.

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

Hi
Jane
When patient has adverse toxity to a drug the doctor has a decision to make.

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

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,
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.

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

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
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

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🤪

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.😁
 

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

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.

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.

Tomm,
Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7
He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand  that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME!   THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will  see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...

Michelle
I get to see him for #7 tomorrow but up to this point he says I'm doing well and keep doing what I'm doing, when I do get to see him. No changes to the plan as of yet but I am going to discuss some "things" with him or his assistant tomorrow. hopefully it doesn't take much more treatment for this tumor to lose all it's shape altogether, the May 17th image above is the absolute largest that is left of it from any angle or series of angles. I do want it gone though so will probably have  to wait and see what next month's pet scan has to show, so until then my eyelids and knuckles will continue to drag the ground and I will keep doing the Durvalumab shuffle wherever I go, thanx Michelle......Charles

Tomm,
Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7
He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand  that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME!   THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will  see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...

Great news Charles!
Stay the course.
Tom. 

Charles,
It's really great to hear your great news  and it  let's us know it does work. What is your PdL-1 expression % ? It sure is nice that there is a treatment after chemo/radiation for us. 

Great news Charles!

I have the results from my CT scan on friday, The radiologist said
 
COMPARISON: PET/CT 03/04/2019.
FINDINGS:
Chest: The large area of masslike consolidation involving the right middle lobe and the base of the right upper lobe, which on prior study measured about 8.2 x 6.5 cm overall, currently measures about 8.0 x 3.8 cm. There is very minimal trace right pleural effusion, which has diminished in volume since the prior study. A small pericardial effusion is seen, new. The pretracheal lymph node, which on prior study measured 1.0 x 1.2 cm, currently measures about 0.8 x 0.9 cm. There is no new pathologic lymphadenopathy. The included upper abdomen is unremarkable. Bone windows show moderate degenerative changes.
The radiologist doesn't seem too overly gracious with his measurements  but I assure you that looking and comparing the scans from friday and the pet/ct I had in March, the differences are dramatic and almost unbelieveable, hooray! as can be seen, there is a negative, but compared to all the amazing positives (Imfinzi shrinkage) I am thanking the Lord above,  I will definately take it fore sure. The attachments I have included is what I had in August of 2018 and what I have now, and positive signs the Durvaumab is working

Michelle
I get to see him for #7 tomorrow but up to this point he says I'm doing well and keep doing what I'm doing, when I do get to see him. No changes to the plan as of yet but I am going to discuss some "things" with him or his assistant tomorrow. hopefully it doesn't take much more treatment for this tumor to lose all it's shape altogether, the May 17th image above is the absolute largest that is left of it from any angle or series of angles. I do want it gone though so will probably have  to wait and see what next month's pet scan has to show, so until then my eyelids and knuckles will continue to drag the ground and I will keep doing the Durvalumab shuffle wherever I go, thanx Michelle......Charles

Charles,
That's great news, you give us hope with your posts
enjoy your great news... we are

That’s great!