I have not been on this site for a while, but wanted to share some interesting information with you.
I have been in a random trial (arm 1; I/O) at Mayo’s for over 3 years (started April 2019). I am in the high risk category being IgVH unmutated, 11del, and having trisomy 12. My blood picture became normal in December, 2019, but I have yet to achieve UMRD——close but no cigars.
I had both Pfizer vaccines plus one booster, but declined a second booster as I had a negative antibody response from the initial 3. I had Evusheld in March of this year and I am due for my 6 month “re-enforcements” in September.
The reason I am writing this is because my wife recently had Covid (tested positive at home)——symptoms being dry cough, congestion, no temp, with a slightly runny nose. Probably, the BA5 variant. During that time we did not isolate from each other as it was already too late by the time we tested to confirm it. I tested negative and had no symptoms. It may be a big hooray for Evusheld or just the “luck of the draw”—-I don’t know. What I do know, is that I am a very senior citizen with an IgG of around 600. So hopefully, Evusheld plays a big role in protecting those of who are immuno compromised with CLL from the many variants that Covid has confronted us with so far.
‘Just thought I would share. Best to everyone.
Varney
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Varney
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Thanks Varney for the info. I’m very much like you as you described yourself but quite a bit younger. I too hope that the Evusheld is the secret to your success as it would bode very well for me too.
Good luck to you, Jeff. I think the future is bright for young people who unfortunately are diagnosed with CLL. So many new meds and combination of drugs to attack this cancer with hopefully less and less side effects. I really believe that the word “cure” will be used in not to distant future when one is confronted with this malady. Take care.Varney
Varney, lovely to read your post coincidentally just as I am sitting in the hospital Chemo unit waiting for my Evusheld injections now!! I hope I manage to get the same preventative effect as yours appear to have had. Thanks for sharing your good news.
Hope it works for you. I always feel that having Evusheld gives us a little more ammunition added to our already weaken immune systems that should we come down with Covid that it will perhaps provide us with a shorter and less severe case of Covid. Boy! Was that a long wordy sentence. Wishing you the best.Varney
Hello Varney,I’d like to thank you for taking the time to share your story. At 72 I’m a semi-old female on W&W for 16 years, with a similar IgG of around 600. I received the first Evusheld shot two months ago, curious if it will provide the hoped for protection boost. I am frustrated that people are saying “everyone’s going to get Covid” so why be vigilant? As the sole caregiver for a disabled husband I isolate as much as possible. Your experience, be it luck or drug effectiveness, is the notch on the bedpost of hope all of us in this situation need. Thank you.
At 72 you are semi- young. You have a lot on your shoulders. You are certainly are a heroine in my book. Hopefully, Evusheld will give all us more protection and/or give us the ability to effectively fight off Covid. Time will tell. Wishing you the very best.Varney
Thank you. Good to hear and happy for you. I plan to travel in September and have been offered evusheld in Toronto. Am unvaxed and over 70. I have been dreading traveling as I mostly stay in safe places.
We have been traveling a lot, because after 2 years of hibernation and not getting any younger (82) we decided to go for it and let the “chips fall where they may”. We do wear N-95s in airports and try to eat outdoors at restaurants. Wishing you the best and please enjoy your September trip.Varney
Yes - it’s possible to travel and avoid covid! I had Evusheld last spring and was in the UK recently - wore my n95 constantly on the plane, ate all meals outdoors and masked when inside stores - and even went to a show masked - never got covid and had a wonderful time. Also - I had many “how to be safe in the UK” suggestions from people on this site which I heeded and they helped immeasurably! (Many thanks to them!!).
I seem to recall quite a few comments about people having no antibody response to the two vaccines plus booster and then having a good response after the fourth / second booster.Mind you, I am also Tr12 & asplenic and had no antibodies from vaccine, even after five doses, so there is no guarantee
You are right that some people responded after the second booster. Somewhere I read that people treated with Obinutuzumab were less likely to have a positive response to the vaccinations. Thus, this is partly why I didn’t get the 2nd booster, plus the fact that the virus had mutated so many times, that I wondered what good would another booster provide. That was my rational—-good or bad. Take care and wishing you the best.Varney
Varney, I'm so happy you didn't get covid. But I had both vaccines and both boosters. Plus in April the Evusheld. My husband got covid 1st and 6 days later I tested positive. I'm ony 8 day after testing positive. I feel it helps us not to get deathly sick and hospitalized. But it does not prevent the awful virus. Cindi
Well, if doesn’t prevent it, but allows the symptoms to be milder, that certainly is a huge PLUS! Hope, your symptoms stay mild and you have an uneventful recovery. Wishing you the bestVarney
In the US did they approve giving a second round of Evusheld after 6 months? My father (has CLL) received his first round but I thought that the second round was not yet approved/offered.
Hi, I am on ww for the last 20 years, although I do receive immunoglobulin infusions monthly. My IgG is in the high 600s. I am also in my very late 70s. I have tested positive for Covid and have been taking Paxlovid for the last 3 days. Feeling somewhat better. In the states, I don’t remember hearing much about Evusheld, wish it had been pushed more, now that I have covid.
Good luck to you. Hope your symptoms are mild and that you have a speedy recovery. Congratulations, also on being on W&W for 20 years. Wishing you the best.Varney
If you received your 2nd dose of Evusheld at the end of February you are not eligible until the end of August. The 6 months start after the 2nd injection and they seem to be very strict in that regard. I received my 2nd Evusheld (150mg) the 1st week in March, the 10th and my wife got Covid in July. I am due for my 6 month after September 10th.
I use Nasal Saline spray 3 times/day and also use a nasal iodine spray if I am in close quarters. Just something I decided on my own and am not here to recommend to anyone.
We did not separate in our home at all. Since it seems with BA.5 that you are contagious 2 days before symptoms occur, I figured I had already been exposed. I only wear a mask in airports, but that may change as BA.5 is on the increase in SC. Your best protection is the N-95 mask.I hate masks so we shall see. I am hoping my nasal sprays will afford me some protection.
I use Arm & Hammer “Simply Saline” which you can buy on Amazon. CofixRX (cofixrx.com) for the iodine spray. The saline spray should have no contraindications except if you are on a low salt diet. It is always best to check with your physician first. The iodine spray is 1.25% iodine. There are allergies to iodine. Also, if you have any thyroid conditions it may be contraindicated. I would again check with your physician first if you intend to use it and then I would only use when faced with crowded conditions. I take no other meds other than Ibrutinib and have no other co-morbidities. I have used the saline spray since 2012 when a physician at Mayo’s recommended it. No physician has recommended the iodine spray. I ran it pass Mayo’s and they were non-committal. Iodine kills about everything, so that is why I use it. So good luck. Take care.
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