Hi peoples!
Brian is hanging in there! He's on his 31st every 3week chemo regime of Jevtana. Hard to believe we started this war 5 years and 10 months ago! Fighting and fighting.
Question: He just tested posiive or Covid yesterday. He's fully vaccinated. Had the bivaliant vaccine on September 8th. Symptoms are mild right now. He's started with a stuffy nose and cough 5days ago. Is the side effect risk worth taking Plaxovid?
what do you think? Any experience s?
Tough call but with all the chemo I might lean a bit towards Plaxovid. I just recovered from COVID despite being vaccinated and my onset was just before the bivalent vaccine came out. I did fine just like having a moderate cold. In my case only on ADT+Zytiga and one year out from RT. Sending prayers for an uneventful recovery from COVID.
Thanks TylexGP... that's my issue. So many variables. The side effects look like it could cause issues that might more of an issue than the mild symptoms he's having now from Covid. BUT if things go south we'd kick ourselves for not trying. Doctor is not really committed either way. 🤫
So far as I know, there isn't yet compelling data that this antiviral is of great benefit to fully vaccinated folks not in the highest-risk groups. Its initial provisional approval was based on studies of unvaccinated subjects.
I took it when I tested positive in early July. After seeming to improve for bit, I spent the next five weeks with severe fatigue, coughing at night, shortness of breath upon exertion, mild headache, and deeply depressed mood. (I credit the use of over-the-counter antihistamines with helping relieve all those symptoms, but I can'f know if that was just coincidental with the post-COVID timeline of symptoms I was destined to follow.)
Would my symptoms have been even worse if I had NOT taken Paxlovid? That's entirely possible, too. But as I said, I don't think there are yet any RCTs that would help answer that question definitively.
Right O! So... the symptoms and outcomes are so variable based on both your response to Covid and the vaccines. Wish there was more testing before we had to make thia decision. Thanks for answering Noah.
I will add that this appeared in "Nature" a few months back:
"Two recent studies suggest that it is surprisingly common for SARS-CoV-2 to return in untreated cases of COVID-19, while hinting that the virus’s comeback is fiercer and more common in people who take Paxlovid."
The fact that "rebound" cases with Paxlovid seem to be well confirmed (even if not well understood), along with the fact there is no proven benefit for the fully vaccinated at low-moderate risk, makes me think that if I had a do-over I would not take it.
Paxlovid nteracts with many medicines. One needs to check with the doctors to see if any of the meds he is taling interacts with paxlovid. It also requires dose adjustment if there is some kidney failure.
It is only effective if taking during the first 5 days after the symptomsps start.
tango hit the nail on the head; Paxlovid only recommended in the early stage of the infection.
He is a good candidate for bebtelovimab, and he qualifies as having a compromised immune system. But he may be out of the window where it is effective. The benefit of this monoclonal antibody treatment is that there is no rebound like Paxlovid and no drug interactions.
After doing a touch a research based on you all's information... we are most definitely not going the Plaxovid route. His doctor told him he'd have to stop 3 of his medications for 10 days! He's on day 6 of symptoms now and not doing bad! Like a sinus infection/cold. We have OTC meds and lots of elderberry, zinc and echinacea infused products to speed it along.
Thanks so much for the help! ❤️
which medications did they want him to stop? That’s a risk I wouldn’t want to take either
I can’t give advice but I took Paxlovid as I was eligible having had CyberKnife treatment 4 months before. I was on bicalutamide when I got Covid. Paxlovid was like the cavalry coming to the rescue and completely saw off Covid pretty much immediately. I had no adverse side effects and was glad to have been given it. It had just been made available in U.K. under NHS for certain categories of patients.
Thank you for answering GreenStreet. I'm so glad you had such a good experience. May I ask if you were vaccinated for Covid?
Yes I was I had my second jab before getting it. Funnily enough I am having this autumns jab tomorrow. Hope all goes well with you guys 🤞👍👍
Thank you GS. So far so good. did pick up the Plaxovid prescriptions for us both today... but I'm holding on to them. I just read my 1st article today that the new variants are here, do not respond well to the monoclonal treatment and the Plaxovid does. Granted it was the 1st article I read and it was the NY Times. I always read at least 4 or 5 sources before I draw a conclusion and even then am open to more reliable information . But I'll hld n to the medication in case it's needed desperately later on. We've avoided Covid for 2 years and 7 months. Hope we can avoid any new variants emerging too.
Take care and thank for your well wishes. Same to you!
the reason to take Paxlivid is to prevent and ICU admission and death. If you are fit vaccinated and under the age of 65 then it does not really help and it blunts your immune response so you might be more likely to get it again right away. Each chemotherapy is different so I would as you oncologist what he thinks about his risk from COVID. If he has no other risk factors it might not be worth it. On the other hand if he is 50 lbs over weight and elderly it is definately worth it. Since you are preventing death and the side effects are not severe enough to cause death they are not real important. I would look into drug interactions.
My inclination would favor monoclonal antibody treatment if there is any sign of flare up to more severe symptoms. He probably already has enough kick to his immune systems after 5 days to top off his immunity on top of vaccinations.
Great advice MB! That will be a plan if things go south. Very good... thank you. ❤️
Thanks GP4! I totally agree. We decided to forgo the Plaxovid. Teleguy talked about bebtelovimab. If we'd known about that early on we might have considered it. He is overweight (thanks Prednisone) and is 68 years but was in excellent health before cancer. He was in the gym 4 times a week and played paddleball for over 40 years. I am thankful for this as I believe it has a lot to do with his longevity now! And the fight with Covid. Plus we're fully vaccinated including the bivalinet shot in September.
Still just cold/sinus infection symptoms so this time... I'm taking a leap and saying we're going to be okay. He's on day 6 I'm on day 5.
Thanks for answering! ❤️
I tried Paxlovid but had to stop after two days. It totally takes away your taste and you get very nauseous. It also took about two weeks to recover from it. Check out Epoch TV if you want to get the real story about Covid and the vaccines. I've had the two initial shots of Pfizer and a Moderna booster, but will definitely not be taking anymore.
Oh! Sorry. Did you have bad side effects?
Only as noted.
Sorry! Should've been clearer. I meant the Covid vaccines based in the fact you won't receive any more.
Look at Epoch TV. There are a whole host of reasons why you shouldn't be getting the Covid vaccines. I didn't have any side effects from my initial two shots nor the booster, but count myself very lucky with regard to those that I might have had, according to what I know now.
I am on my last day of Paxlovid and it does leave strong bad taste in your mouth. However, it has not affected my taste, smell or made me nauseous. Since I started it so early I have barely noticed any Covid side effects. I am concerned about the confirmed rebound possibilities with Paxlovid.
Thank you for answering GW. For my own information, have you been vaccinated? I too am concerned about not only the rebound but also the drug interactions. We got our prescriptions but chose to hang on to them. We're on day 16 of Covid and still just have runny noses. Hard to say if that's just not the usual this time of year in Michigan!
I went to your page and read your story. You two have been on quite a journey. (I realize it's his but you are on it too.)
I was wondering about the Daro you mentioned you thought was a mistake to end tx? I looked up Daro and all I could find was it used as a TX for ADHD. Is this the same drug?
I'm sorry to hear of all the other issues he's been burdened with. I'm glad he has QOL that allows some happiness and enjoyment. That's what it's all about!
God bless you both! 🙏 💙
my husband just had covid 2 weeks ago and took plaxovid with no issues has to be started with in first 5days I believe the very next day he felt better
glad he is doing well on the chemo, what is his PSA numbers, on my fourth infusion next week. How is he handling the side effects, any information you could give me would be fantastic. I got the newest booster about two weeks ago for more protection , luckily never got covid even though working part time, now retired and if next week. Thank you for your response.
HI M2019!
He got dx in December 2017 with about a 1,600 PSA. 12 out of 12 cores. He did Taxotere for 6 weeks with Casodex and Lupron. Zytiga worked after that for about 2 years. His PSA dropped to .2. It rose to 12 and they put him on Xtandi. Awful for him. He was on that for 3 months only. PSA to 20's. Started every 3 week regime of Jevtana and has been on for 31 cycles. PSA rose to 34 recently but dropped to 24 after is most recent Lupron shot.
We hope between the Lupron & Jevtana we can get some significant time.
Side effects last about 10 days. They start about 24 to 48 hours after infusion. Headache, fatigue, no appetite. Then about 72 hours after he gets tightness in his throat and Loss of taste plus the other side effects. Sometimes his ankles swell up and sometimes his knee. After 96 hours they start lightening up by day 10 he feels pretty darn good. Then fine until day 21 with the next infusion.
he had had a few not yet come to me and side effects but glad he is still fighting the battle . Sounds similar to my journey so far, his experiences are encouraging to our survival. Hopefully our journey will continue with new treatments down the road, little further back than him. Never give in and never give up, you sound like a great wife and care giver, God bless you both.
Thank you. God bless you.
Did his PSA go down then back up then down, did it fluctuate? Mine started at 48, dropped to 30, 29 then 26,now at 29 again after 4th treatment, going for my fifth treatment next week, does it normally go up and down like the stock market while on jevtana . Headache, fatigue and some loss of taste of certain things, not sure what it is unless I look at it. Has anyone else on jevtana had their PSA go up and down while on this treatment ? My bad days are the third and fourth day after infusion then gets better in the next week.
Oh wow... that is EXACTLY what Brians cycle is too!
I tested positive about a week before the bivalent vaccine was available here. I'd been previously triple vaccinated. I'm 73, working, only slightly overweight, and relatively good health, but take cardiac drugs to lower my blood pressure.
I took Paxlovid early on, spent 1-1/2 days in bed, with semi-mild flu-like symptoms, and 101 fever, then about a week before feeling normal.
My wife, 70, was about a day behind me, and better general health than me, didn't take Paxlovid, and had similar symptoms, but about 1-2 days longer than mine.
Knowing more about possible longer term effects, and drug interactions, I lean toward not taking it again, even though I didn't seem to experience those possibilities this time.
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