Just looking for advice. My wife tested positive for COVID today and is quite ill. I was on a car with her before diagnosis and she was sneezing and coughing alot.My oncologist rang today to say my neutrophil count was 0.75. all other markers ok. He has suggested an injection into stomach as he said risk of infection high. My question is will this effect lbrutonib and Venetoclax. He also told me to stop taking antibiotics which I have been taking 3 times a week. Looks like I have to wait to see of I contract COVID re anti virals. Again not sure how they might interact. Sorry for long post.
Tony.
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Hi Tony, sounds like your oncologist intends to give you G-CSF (Granulocyte-Colony Stimulating Factor) Treatment to boost your neutrophils. It’s given as a standard practice alongside your Ibrutinib & Venetoclax treatment to boost your bone marrow into making more white blood cells if they have been impacted by the I&V itself.
I have Covid at the moment (in remission following I&V treatment) and it’s tough. My husband has also contracted it so unless you can really separate from your wife in your home, I’m afraid there’s a good chance of getting it too. Being neutropenic, your doctor will naturally be concerned about your impaired immune system should this happen. I’m not neutropenic but I have very depleted immunoglobulins so my immune system remains impaired despite being in remission.
Please keep checking yourself because initially I tested negative and by the time I tested positive for Covid, I was outside of the 5 day qualifying period for Paxlovid (anti virals). It’s essential you are closely monitored and report any Covid infection immediately.
I had a Sotrovimab infusion for Covid in 2021 when I was still on Venetoclax and all was well. I didn’t have to stop the meds.
I hope your wife feels better soon. This can be a rough strain and I’m still pretty unwell 10 days in.
Thanks Jig. My Oncologist very unclear about this. Last time I got from GP. He thinks I need to get from hospital. But yes I will look into on case I get a positive COVID result.Tony.
It used to be the Hosp, but there has been a move to shift the Covid Medicine Delivery Service into Primary Care. Progress is patchy hence worth checking.
I agree with Newdawn , get the G-CSF as soon as possible, and then try to avoid breathing the same air as your wife.
I managed to avoid getting COVID from my wife, by both of us masking inside our home whenever we were near to each other, using separate bedrooms, bathrooms and not eating at the same time and place.
We tested daily, she used Paxlovid for 5 days, and tested positive for 7 days, but I never got symptoms or tested positive.
It's not pleasant or comfortable, but far better than going through COVID symptoms and risking hospitalization & a fatal infection.
I returned from a week visiting my cousin in the hospital with a bad sore throat. My husband picked me up from the airport and we spent an hour together in the car riding home. I wore a mask just in case the sore throat was from Covid, and that night I slept in a separate bedroom, and wore a mask whenever we were in the same room, and we ran an air filter. I soon tested positive for Covid, and I continued to eat and sleep separately for 3 weeks, which at the time was recommended for immune compromised people by the CDC. Eventually I got well and my husband never caught the virus. I wish you luck and hope you will stay well, too, please get plenty of rest and eat well. I hope your wife recovers soon.
Just to add that I’ve learned a little bit about this referral system to a CMDU over these last few days. It is still chaotic so I agree with Jig about being prepared. In my experience GP surgeries and haematologists are not always well informed of process since the CMDU (Covid Medicine Delivery Units) went into the ‘community’.
I discovered my CMDU doesn’t work Sundays (and possibly not Saturdays too). If you find yourself testing positive at an inopportune time (like Christmas Eve and a Sunday like me), ring 111 and they’ll do an initial assessment on you. That stimulates a referral to another assessment this time clinical then eventually a doctor will ring from a CMDU covering your area. Mine was very good. I’ve managed to get details of my referral and discussion off the NHS patient portal. Interestingly the doctor indicated that I’d made her life easier by ‘having knowledge of many things’ which made me smile. Not done that much this past week.
They are very specific about the chronology and will want to know when your symptoms started not just the positive test date. This is easier if you’re testing daily. Because of licensing regulations, they won’t approve Paxlovid outside of the 5 days. It can be given up to 7 days ‘off label’ but I had the impression it isn’t.
Be sure to tell 111 you are at high risk from Covid and would like a referral to the CMDU. They’ll still insist on the standard speel which is actually irrelevant in parts but they insist on covering it. These are not usually clinical assessors but gather info. They listed my leukaemia (spelled incorrectly) as CMD 🙄 It’s not perfect but it’s the ‘route to the loot’ which is anti virals.
Your GP and specialist can also make this referral and you could strengthen your position to enquire if they know how to do so. I’m an only saying this because I’ve had the run around and once spent an entire Christmas Day trying to secure help. Everywhere was closed!
Really hope you don’t need a referral however. 111 won’t refer you to the CMDU unless you ‘pass’ their screening and that means a positive test result.
Best wishes,
Newdawn (who has coughed, spluttered and used two tissues throughout compiling this post so don’t be fooled that it sounds lucid!)
Thanks for the efforts you have made through coughing and spluttering to write this post as guidance for anyone who needs it. The biggest takeaway I have from your post (other than you being very unwell) is how to get them to give you antivirals If you don't test positive until day 6!!
I agree Kate. I would say in this case however, I felt this doctor was making the decision for sound clinical reasons in that she genuinely didn’t believe introducing Paxlovid at this stage would help. Having just read the ‘mechanics’ of their application, I could understand why. I respected that she admitted there were still things we didn’t know about these antivirals including what happens when they are introduced passed their efficacy range.
However, it is a bit scary and frustrating that there’s nothing else (I did ask) but we did discuss the type of recommended antibiotics should the infection begin to feel bacterial. If I keep coughing like this, I will need to consult my own GP.
Thanks for your helpful posts on this topic. I do hope you get well soon. Can you expand on the symptoms of “should the infection begin to feel bacterial”? I’ve been lucky with infections so far but I always wonder about what it feels like for an infection to take a turn toward sepsis, pneumonia, etc.
I don’t want to hijack Tony’s post but in that it might prove generally helpful, I’ll describe the symptoms I watch for in myself. However, I’d urge everyone to seek medical advice because it requires sputum culture, chest X-ray, and blood work to determine the dx of a bacterial v viral infection plus the individual doctor’s examination and observations.
I watch for tightness below the upper respiratory tract area and a certain tightness and sound I seem to get. I produce green or yellowish sputum from much deeper with a bacterial infection whereas presently my throat and nose are blocked and irritating in the extreme. Frankly it’s more what we’d think of as snot! (Sorry TMI)
As I’ve had bad pneumonia and sepsis, I now watch my b/p and pulse throughout the day. Personally, an elevated heart rate and reducing b/p would make me reach for help along with reduced oxygen levels. I simply began to feel dreadful when sepsis was developing and my urine output decreased but others can have differing symptoms. It needs urgent intervention.
I’d say if in any doubt, seek advice. Viral infections are wretched too and seem to last much longer. Unrelenting coughing can be hard on the heart and at the moment I’m having to hold my ribs and brace myself for the coughing fit! 🥴
Thank you Newdawn. This is very helpful advice that Tony, myself and many others will benefit from. I’m going to save this thread to have your protocol handy. Please get well soon😀.
I’m sure you have gotten good advice in the 14 replies. Without reading the replies I will throw in my 2 cents.
Does your oncologist know you had a significant Covid exposure? I imagine your oncologist told you to stop the antibiotics because, you are most likely taking pneumonia prophylactic antibiotics that are know to potentially cause neutropenia/low neutrophils.
I would take the abdominal injection, which could quickly elevate your neutrophils. Would try to get your wife antiviral treatment. If your oncologist does not know about the exposure, I would quickly notify them and ask for guidance. Additionally, it is possible your oncologist might want to alter your CLL treatment due to the exposure.
Thanks Davod, I don't think they will give my wife anti virals. Last time we had. COVID I had them and was fine on 5 days but was on watch and wait then.
My sisters son (adult who moved back home) had Covid. Now my sisters husband has Covid. My sister has insisted that her husband wear an N95 when anyone is in the house, use their second bathroom, and open a window and use the air purifier in the living room when he wants to sit there. I actually have to chuckle. My sister said he is acting like one of her kids. He doesn’t want to wear the mask and wants to use the main bathroom. She is holding her ground with him. So far she is staying healthy! She has to be the mama bear sometimes! Hope everything goes ok. Stay healthy!
I’m in the Northeast part of the US. I got Covid while in active treatment. My Team got me in immediately for an antibody infusion (IVIG) and I was directed to suspend my cancer medications and began Paxlovid. My immunity had been incredibly low and never rebounded. Even though Covid was supposed to have evolved to be “flu-like”, I can tell you that it really knocked me for a loop.
Alert your team that your wife has Covid and come up with a plan of action should you test positive. Although we are lucky to have therapeutic medications, they have to be administered in a very timely fashion in order to be effective. In spite of all these interventions, I became far sicker than I imagined. I’m grateful that I had a responsive team. Even though I was very sick with Covid and had a horrible immune system, I managed to remain out of the hospital and survived. That of course is the best possible outcome.
Thanks Sandy. I told my Hematologist and he didn't know what I should do. He just said go to doctors or chemist. Not a great team here in Leicester, I get more support from this site.Tony.
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