Robert Macaulay Posted August 7, 2018 Share Posted August 7, 2018 Just found out the new drug I will be receiving shortly and wonder if anyone is presently on this type of treatment. Link to comment Share on other sites More sharing options...
Kleo Posted August 19, 2018 Share Posted August 19, 2018 Hi Robert! I'll be starting on Durvalumab shortly myself. It's so new I don't know if anyone has been on it all that long yet! It appears to work similar to Keytruda...?..if I'm reading it right. My oncologist is pretty excited about it though. LOL Link to comment Share on other sites More sharing options...
Robert Macaulay Posted August 19, 2018 Author Share Posted August 19, 2018 I start on August 27 and my doctor said last week they were very pleased with previous results of the drug. She also said in the same breath if it does show any progression after three months of treatment we will stop the infusions . Bob Link to comment Share on other sites More sharing options...
Kleo Posted August 19, 2018 Share Posted August 19, 2018 A little over a week from now! I'm not sure yet when I'll start. Probably sometime in September. I just finished 6 weeks radiation so I have to wait for the 3 week post check-up to find out. Not thrilled about infusions every 2 weeks...BUT...it shouldn't be nearly as long as the chemo infusions were! So YAY that! I believe I read that they have made Durvamulab the standard treatment now for unresectable lung cancer following platinum based chemo and radiation. Keep us posted on how it's going. I'll be right behind ya! Hoping this stuff works wonders! LOL Link to comment Share on other sites More sharing options...
Robert Macaulay Posted August 19, 2018 Author Share Posted August 19, 2018 Hi Kleo I Do not worry about wonders I will be very happy to complete the full year of treatment as planned. Right now CT scan in November and meet the doctor so go from there, They were happy with my previous treatment so I see no reason this will be any different but each individual can be very different in this game of medicine. I am very fortunate as all the treatment cost are covered at no charge to me and that is very substantial over the course of this type of treatment. The doctor did go over the side effects and seem no different from the previous chemo so the way I look at it Que sera sera lol Bob Link to comment Share on other sites More sharing options...
Kleo Posted August 28, 2018 Share Posted August 28, 2018 Bob! Come tell me how the first treatment went! 😜 How long did infusion take? Did they give any steroids or any other stuff too? How ya feeling? Link to comment Share on other sites More sharing options...
Robert Macaulay Posted August 29, 2018 Author Share Posted August 29, 2018 Hi Kleo The infusion took one hour and then the usual 15minute flush. I was in private clinic for the first time and the paper work and also the mixing of the drug for the infusion as it does not come in bag that took about another hour and that looks like the norm in and out two hours. No other drugs or medication as far as i know. Felt bit tired this afternoon exactly 24 hours after the infusion other than that if Wednesday is good with no side effects piece cake. They require I get blood work done and meet with doctor prior to each new infusion same as the last Chemo treatment, And I also have CT scan scheduled for October -29 and meet with the Oncologist November-8 That will tell the story if it is working or not. The life of a cancer patient Appointments. lol Link to comment Share on other sites More sharing options...
LexieCat Posted August 29, 2018 Share Posted August 29, 2018 Best of luck to the two of you! Please keep us posted on how you are making out--you guys are like the intrepid pioneers. Love your attitudes. Link to comment Share on other sites More sharing options...
Kleo Posted August 29, 2018 Share Posted August 29, 2018 Thank you Bob for the update! And thank you Lexie for the well wishes! 😘 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 5, 2018 Author Share Posted September 5, 2018 ust had my Bi weekly checkup and blood work done prior to my second infusion of Durvalumab, I asked the nurse why I was getting the infusions at private clinic and not at the cancer clinic in the hospital which is five minute drive away to the private clinic, She said good question I will ask the doctor for you. Doctor came in had the usual how are you any effects. I said none at all. He said to answer your question about private clinics. You are getting this drug Durvalumab under compassionate drug use and is not funded under the public health in Canada yet and the treatment is fully paid by the drug company.This compassionate drug use in what I read this can be applied if no trials are in the patients area, And must be referred by treating doctor under compassionate drug use rules . Intresting Bob Link to comment Share on other sites More sharing options...
LexieCat Posted September 5, 2018 Share Posted September 5, 2018 Very cool! You are fortunate to have that available to you, as well as doctors who can help you get hooked up with the latest and greatest drugs. I just did a quick google and found out the monthly cost is $15,000 (USD). Yikes! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 5, 2018 Author Share Posted September 5, 2018 This compassionate drug use is available in the USA . Link to comment Share on other sites More sharing options...
Kleo Posted September 5, 2018 Share Posted September 5, 2018 Wow! Expensive stuff! I'm lucky as well I get it covered under a local charitable organization called Baycare. I STILL don't have my start date though! Saw my onc today and she's ordering a CT first, follow up in 4 weeks...THEN I start. I think she's going on vacation so that's probably why I'm delayed. I guess there's no rush huh? October it is.... LOL And YAY for no funky side effects Bob! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 5, 2018 Author Share Posted September 5, 2018 3 minutes ago, Kleo said: Wow! Expensive stuff! I'm lucky as well I get it covered under a local charitable organization called Baycare. I STILL don't have my start date though! Saw my onc today and she's ordering a CT first, follow up in 4 weeks...THEN I start. I think she's going on vacation so that's probably why I'm delayed. I guess there's no rush huh? October it is.... LOL And YAY for no funky side effects Bob! And the clinic I use is Bayshore just a coincidence I doubt it. Just buy good laxative and your good to go. lol Link to comment Share on other sites More sharing options...
Judy M. Posted September 5, 2018 Share Posted September 5, 2018 We do also have compassionate care drugs available in the U. S that have not yet been approved. I know because my last Oncologist who wanted to try the Opdivo/Yervoy combo next said that was the way he could get that. Judy M. Link to comment Share on other sites More sharing options...
LexieCat Posted September 6, 2018 Share Posted September 6, 2018 3 hours ago, Robert Macaulay said: This compassionate drug use is available in the USA . Oh, I know it is. I just meant it's great when anyone who needs these drugs has a way to get them. Anyone eligible for such a program is fortunate. I know that R&D of new drugs is expensive, but some of the pricing really is off the charts. Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 6, 2018 Author Share Posted September 6, 2018 4 hours ago, Kleo said: Wow! Expensive stuff! I'm lucky as well I get it covered under a local charitable organization called Baycare. I STILL don't have my start date though! Saw my onc today and she's ordering a CT first, follow up in 4 weeks...THEN I start. I think she's going on vacation so that's probably why I'm delayed. I guess there's no rush huh? October it is.... LOL And YAY for no funky side effects Bob! Funny had my CT July-25 Four weeks later August-27 had first treatment. Link to comment Share on other sites More sharing options...
Kleo Posted September 6, 2018 Share Posted September 6, 2018 Bob I think we are treatment twins here...😁😁 Just got my CT appt for Sept. 26. That puts me at the end of October then for my first treatment. By then you'll have had several treatments so you're gonna be like my Yoda guide through this stuff! 😏 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 6, 2018 Author Share Posted September 6, 2018 Kleo I meet with Oncologist November- 8th to review the results and make a decision to continue or cancel this treatment I will have had five infusions prior to the scan on October-29. I like quick results one way or another. Bob Link to comment Share on other sites More sharing options...
Lisa R Posted September 23, 2018 Share Posted September 23, 2018 How is everyone tolerating durvalumab? what are your thoughts about it? Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 23, 2018 Author Share Posted September 23, 2018 I go for my third infusion on September-27 and only feel tired the day after the infusion. Everyone has different reactions to any drug and for me I had none during chemo except for the usual fatique. What I have read if you can stay with it the results are very promising for some individuals who have posted there results, So for my markers glad to be on it. There is also a combination out there using this drug also. Bob Link to comment Share on other sites More sharing options...
Kleo Posted September 24, 2018 Share Posted September 24, 2018 I still haven't started mine. 😕 Gotta wait for the CT scan this week. Bob you didn't have side effects for chemo?! Wish I could say the same! Why do they always gotta have the icky side effects? Nausea, vomiting, neuropathy, hair loss, fatigue, etc. I wanna discover one that has some cool side effects. WARNING: May cause the sudden ability to fly, enhanced telepathy, increased speed and agility, night vision, extreme intelligence, etc. LOL I think I watch too many X-Men movies..😄 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 24, 2018 Author Share Posted September 24, 2018 Kleo The last two full doses of chemo were not very pleasant glad it was only two lost all my hair and two days with very bad fatigue and weight loss in the past now. With this new drug I still cannot pick the winning lotto numbers, maybe with more infusions it might help.. Bob Link to comment Share on other sites More sharing options...
Kleo Posted October 4, 2018 Share Posted October 4, 2018 Got my start date finally! This Wed October 10. Eeep! Excited but nervous. LOL Link to comment Share on other sites More sharing options...
LexieCat Posted October 4, 2018 Share Posted October 4, 2018 Yay! It will be great to get the show on the road. And really, you and Bob need to take YOUR show on the road--you guys crack me up. Link to comment Share on other sites More sharing options...
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