Barb1260 Posted April 20, 2019 Share Posted April 20, 2019 Lucky I am. Most of the time I can go with the flow, other times I just want to give up when I’m stuck in the same place and not moving forward. Nerve wracking to wonder what’s going on inside your body when there’s a setback. Guess I’ll find out at the Oncologist office Thursday. Enjoy the weekend 😎 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 20, 2019 Author Share Posted April 20, 2019 16 minutes ago, Barb1260 said: Lucky I am. Most of the time I can go with the flow, other times I just want to give up when I’m stuck in the same place and not moving forward. Nerve wracking to wonder what’s going on inside your body when there’s a setback. Guess I’ll find out at the Oncologist office Thursday. Enjoy the weekend 😎 The oncoligist might wonder why you got predisone knowing you were going to get Durvalumab. But if only small dose you will be good to go. Link to comment Share on other sites More sharing options...
Barb1260 Posted April 20, 2019 Share Posted April 20, 2019 The oncologist and pulmonologist spoke on the phone while I was standing there. They decided together to knock it out before the Durvalumab because it can be a side effect of the Durvalumab and I guess they want to start with a clean slate. All the docs are in contact because of the newness of immunotherapy and basically are still learning themselves because there is not a lot of history. Guess we can call them trail blazer guides. Tom Galli 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 20, 2019 Author Share Posted April 20, 2019 Barb That makes sense. I was on infusion #8 and had to go to ER had been coughing all night and the young doctor was going to give me Predisone and i told her i was on Durvalumab and she called the on call oncologist and he ordered a ct, and sure enough inflammation surrounding my tumor that is how the drug works and he said no Predisone and i was sent home Barb1260 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted April 20, 2019 Share Posted April 20, 2019 10 minutes ago, Barb1260 said: The oncologist and pulmonologist spoke on the phone while I was standing there. They decided together to knock it out before the Durvalumab because it can be a side effect of the Durvalumab and I guess they want to start with a clean slate. All the docs are in contact because of the newness of immunotherapy and basically are still learning themselves because there is not a lot of history. Guess we can call them trail blazer guides. There are breakthroughs in treatment taking place everyday. This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions. Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice. It has made a world of difference for me. Forums like this one and other focus groups you can join are a wealth of information. Be sure and do your own verification on things you learn. 🦅 Barb1260 and Tom Galli 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 20, 2019 Author Share Posted April 20, 2019 Eagle13 That is correct. My doctor was upset that the ER doctor kept saying i was on chemo and had no idea i was on Immunotherapy. I now keep the info on me at all times and use the medical bracelet that Imfinzi gave me. Barb1260 and Tom Galli 2 Link to comment Share on other sites More sharing options...
Eagle13 Posted April 20, 2019 Share Posted April 20, 2019 17 minutes ago, Robert Macaulay said: Eagle13 That is correct. My doctor was upset that the ER doctor kept saying i was on chemo and had no idea i was on Immunotherapy. I now keep the info on me at all times and use the medical bracelet that Imfinzi gave me. Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups. I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected. The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment. 🦅 Tom Galli and Barb1260 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 20, 2019 Author Share Posted April 20, 2019 1 hour ago, Eagle13 said: Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups. I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected. The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment. 🦅 Eagle13 Yes Imfinzi sent me all the material for record keeping and a 800 number if rquired for any concerns. while on this drug. I found with getting my bi-weekly blood work sent to me online. That is what the doctors look at prior to ordering your next infusion excellent information to stay on top of Barb1260, Tom Galli and Roz 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted April 25, 2019 Share Posted April 25, 2019 Just as I thought, no Imfinzi today. Finishing 4 more days of prednisone. But I get to go to the hospital tomorrow to have my port checked with due because of the shoulder and neck issue. If it’s the port will change it then. So no eating breakfast. Waiting, waiting, waiting. Tom Galli 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted April 25, 2019 Share Posted April 25, 2019 Just as I thought, no Imfinzi today. Finishing 4 more days of prednisone. But I get to go to the hospital tomorrow to have my port checked with dye because of the shoulder and neck issue. If it’s the port will change it then. So no eating breakfast. Waiting, waiting, waiting. Charles 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 26, 2019 Share Posted April 26, 2019 Well that sucks all around! I hope they can address the port issue. Mine never worked from the beginning thus I was thrilled when it came out! Hang in there! Link to comment Share on other sites More sharing options...
Charles Posted April 26, 2019 Share Posted April 26, 2019 Barb, Aint that just a kick in the dang head? If I might ask, what mg is the prednisone they have you on? You didn't mention them saying anything about a "taper off" of the prednisone or anything so I would guess 10 mg? Link to comment Share on other sites More sharing options...
Barb1260 Posted April 26, 2019 Share Posted April 26, 2019 The dose was 20mg 2x a day for 5 days then 1 a day for 5 days Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 26, 2019 Share Posted April 26, 2019 On the “bright” side, the pneumonitis was caught very early & you avoided an inpatient stay. Waiting for a few more days is a far better deal. You put that cancer on notice big time! Barb1260 1 Link to comment Share on other sites More sharing options...
Charles Posted April 26, 2019 Share Posted April 26, 2019 Barb, I wish you a full recovery. Link to comment Share on other sites More sharing options...
BridgetO Posted April 26, 2019 Share Posted April 26, 2019 Hang in there, Barb! Barb1260 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 26, 2019 Author Share Posted April 26, 2019 4 hours ago, Barb1260 said: The dose was 20mg 2x a day for 5 days then 1 a day for 5 days Barb What i read last year geting over 10mg of Predisone while receiving Durvalumab the drug is then halted, Way better to get it cleared as the docs mentioned Barb1260 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted April 26, 2019 Share Posted April 26, 2019 Thanks for the support. I honestly can’t complain. Others are far worse off than I am. My minor issues are temporary. I’m thankful I wake up, can breathe, have a job to go to because lord knows I gotta have a place to go every day to keep me sane. Now to figure out how to get a beach trip squeezed in somewhere. 🏖 Charles, Curt, LexieCat and 3 others 6 Link to comment Share on other sites More sharing options...
Tomm Posted May 1, 2019 Share Posted May 1, 2019 Hi Barb, I think it's Ok to complain here, this a place to get and give support and nothing is minor if it's happening to you and it's a bother. I hope you get to go to the beach.. Barb1260 and Rower Michelle 1 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 1, 2019 Share Posted May 1, 2019 So the port check with the dye revealed no leaks, kinks or clots. Was advised by the doc doing the check that it most certainly can be soft tissue and nerve irritation from the port. Prednisone is done. Onto the Durvalumab tomorrow-finally. Can one of you tell me if your side effects start at a predictable time, do they go away after a few days and start again with the next infusion? Am I going to lose more hair? cause it hasn’t grown back all the way yet. Getting nervous about this Link to comment Share on other sites More sharing options...
Tomm Posted May 1, 2019 Share Posted May 1, 2019 Hi Barb, I've only had one infusion 13 days ago and no side effects, I already had some fatigue left from chemo/radiation but still working in the garden and going to town. I think it makes your hair grow faster and mine is coming back after the chemo loss. I read that Durvalumab can cause Vit. D loss and found my level very low, I'm raised my d pills up. I get my 2nd infusion tomorrow. Good luck on round one and the best to fellow travelers Link to comment Share on other sites More sharing options...
Barb1260 Posted May 1, 2019 Share Posted May 1, 2019 Hi Tomm. Thanks for the good word on the hair regrowth. Didn’t know that about vitamin d. I shall keep an eye on it. Good luck tomorrow. Link to comment Share on other sites More sharing options...
Charles Posted May 1, 2019 Share Posted May 1, 2019 Barb, Everybody seems different on this drug. one will get one side effect, another will not. One will get several at once, others will get none. I get my infusions on Tuesdays and side effects usually hit on Saturdays or Sundays so I just plan to stay alert and just chill on those days. I ALWAYS keep Ibuprofen handy though and that really helps "minor'" inflammation caused by the drug for me. Go back through some of the links provided by others in this forum on past pages and learn which ones are the ones to REALLY be concerned about seeking help for asap. Fatigue in various levels, coughing, joint and some muscle discomfort are ones that come and go for me , and again, Ibuprofen to the rescue. Monitor yourself and take notes if you need to but do read up because everybody is different. I hope this helps..... Charles Tom Galli 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted May 2, 2019 Share Posted May 2, 2019 Barb, Charles offers a good strategy: chart onset and wane of side effects. I discovered how valuable this was in my 3rd line chemo. Fortunately they repeat in frequency and duration so one can diagnose a normal side effect from something else. I used my cell phone calendar. Also makes things easier on the doctors. Stay the course. Tom Barb1260 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 2, 2019 Share Posted May 2, 2019 Thanks Charles. I will read through all. Just nervous about what to worry about and when to worry about side effects. How do you know it’s minor inflammation? Link to comment Share on other sites More sharing options...
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