Barb1260
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Posts posted by Barb1260
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Well the pulmonologist visit went better than expected. Took another X-ray (starting to worry about all this radiation) and showed nothing,no fluid, no Pneumonitis so the consensus is pleuritis for sure. No prednisone-both the onc and the pulmonologist agreed that at this stage it’s better to let it run its course and just take over the counter anti inflammatory drugs and patches. Said the prednisone will stop the Imfinzi in it’s tracks. I had a bunch of PFTs and said the results are the best they have ever been. Said if I wasn’t doing so well he would consider steroids but he ain’t screwing around with it. Got to go back 4 days after the next infusion to see if it made my symptoms worse. Hopefully with skipping a dose it will all calm down. Did learn that there are no nerves in your lungs, they are all in the Pleura. One good thing, might have to cancel the gross GI tests at the end of November. No anaesthesia with pleurisy-oh darn I was looking forward to cameras in all my orifices 😬
- DFK, Rower Michelle, RonH and 2 others
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Hi Michelle. You are so right. The pain does effect you emotionally and then the physical feels worse. I consider myself lucky, I got through 12 infusions without major problems. The PA in docs office said she has seen others who couldn’t tolerate the first infusion and that was the end. So a little break will do me just fine both physically and mentally. Hope you are doing well and enjoying your trips. 😎
- Rower Michelle and DFK
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Hey Charles. Seems this pain is common. Onc is calling it Pneumonitis and not pleuritis and sending me to the pulmonologist to make sure we get it gone. I’m missing one dose and then back on schedule. At first I was miffed that she’s making me go see the pulmonologist and not just giving me the roids so I can stay on schedule. Her thought was to get it right so it doesn’t get worse and get the pulmonary function tests too. Nervous to take a break but better than more lung damage.
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Silly-thanks. That’s exactly where all my pain is except my lung hurts when I breathe and when I sneeze it hurts like is going to explode. I said today it’s the same spot on my back where the radiation scar was. Haven’t had any since February so Cant say it’s related. I’m happy for the break and the doc isn’t too worried about any negative impact on the treatment. I just want a week without pain when I need to use my arm
- Tom Galli, Sillycat1957 and DFK
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Well I got my break from Durvalumab. Have to see the pulmonologist Thursday to get his input on this pleuritis issue. A little prednisone then back to it on the 14th. The muscle relaxers are to stop the spasms that I’ve had with this. It’s all from the Durvalumab. I’m now getting a little joint pain too.
- Tomm, Sillycat1957 and DFK
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I think I want a break from the Imfinzi. Has anyone taken a break to be on steroids and if so, how long? I’m thinking my onc doesn’t like the idea of a break but if I have to deal with this pain much longer I’ll start getting very depressed. I can deal with pain but it’s my right side and I’m a righty and it effects what I can do with my right arm.
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Hi Kate. Well after being off the prednisone and muscle relaxers for a couple of days and getting another infusion Thursday the pain is back. Called the doc yesterday. PA on call put me back on muscle relaxers. Not helping much yet but I’ll give it a couple of days. She said doc doesn’t want to put me on steroids at this time. The X-ray And CT 2 weeks ago at the ER showed absolutely nothing, not even anything that “might” be inflammation. So I wait. I did ask what exactly are the muscle relaxers supposed to do, said it will stop the spasms which is what I have had off and on. I hate this
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Kleo you are hysterical. I get the Benadryl because I scared them when I had anaphylactic shock from the Taxol and taxotere. Guess they got tired of jabbing me with an epi-pen.
- DFK, Sillycat1957 and Kleo
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Glad your TSH is under control. I just switched from CBD caps to oil but I can’t remember to take it. Switching back to the caps. Have a good weekend. Your CT will be fine I’m sure.
- Sillycat1957, Tomm and DFK
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Well I am halfway through it. Had #13 today and feeling exhausted. Never sure if it’s the Durva or the Benadryl they shoot me up with beforehand but it seems every one makes me a little more tired. Hey Tomm, where are you?
- DFK, Sillycat1957 and Kleo
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Not convinced what sent me to the ER last weekend was/is pleuritis. Saw the onc’s PA on Monday, put me on 10mg prednisone for 7 days and a muscle relaxer. Seemed to think the pain is muscle pain. Except for the pain being gone when I inhale and the muscle spasms gone, still hurts when I move upper right shoulder/arm and back. Heat helps temporarily. Anybody have muscle pain issues as a side effect? I almost want to take a vacation from Imfinzi to see if all this goes away. CT and X-ray were all negative at the ER 😶
- DFK, Sillycat1957 and Rower Michelle
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Hey I’m lucky I got through 12 infusions before any bad reactions.
Just a bunch of pleuritis. No PE or blood clot. Nothing new on the CT. painkillers and anti inflammatory until the onc okays the prednisone tomorrow if she wants to. I told the ER doc it’s usually prednisone for this from the immunotherapy. Said he knows my onc and thinks she may not want me to be on it at this point. Which is fine with me. Not in too much pain. Holding off on the opioids-I’ve had crazy reactions to some and unless my pain is a 20 no way. I have a high pain tolerance and rate this as a 4 on a 1-10 scale. My frame of reference is 32 hours in labor-not even close🥴
- DFK, Sillycat1957 and Roz
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Thanks Tom, I knew you would answer that.
Told the onc about my feet cramping up for a full day after the last treatment, she said she hadn’t heard that one before. She confirmed what I had been saying all along-this stuff is still so new, they are still learning about it. So we are still blazing this trail fellow Durvas!😎
- Rower Michelle, DFK, Sillycat1957 and 1 other
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12th infusion in process. Saw the oncologist instead of the PA. she’s not worried about the 5mm nodule on the left. Said if it grows we’ll do a biopsy. Could be inflammation because it pops of everywhere with the Imfinzi. At this point it means nothing. If it’s cancer we will zap it with cyberknife. Can somebody tell me if that is SBRT? All these abbreviations play havoc with my chemo brain. Also putting me on Wellbutrin. Not only will it give me a little more pep but it will help with seasonal effective disorder because fall and winter are coming. It will also help with the weight gain and depression.
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Durvalumab
in IMMUNOTHERAPY
Posted
Hi Ron. Lol, I’m sorry to say I remember that show. Sorry to read about your side effects. Hopefully they are temporary and/or controllable. It certainly is crazy how some people have no side effects or very little and others get more. Hang in there-we are all fighters and we are all going to win!!