My mum has CLL and had been on venetoclax + rituximab since November 2021 (rituximab suspended early due to lowered neutrophils). We had several mishaps (e.g. frequent diarrhoea) however she was quite well until she got on 16 May and she tested covid positive. She suspended venetoclax, and two days later had a monoclonal infusion (Xevudy 500mg). Two days later the fever disappeared but she had a little cough.
The following week the fever returned and a chest X-ray showed pneumonia. From that moment on, a battle began: antibiotics, cortisone etc. and finally she was admitted to the hospital (infectious/covid diseases ward) for a month and treated with antibiotics and a course of 5 of redemsvir.
In the meantime, her haemoglobin dropped so low that she required transfusion four times.
Today's news: my mum is still covid positive but fortunately the sepsis and pneumonia seem to be over.
My big problem: the doctors want to discharge her from hospital. They claim that my mum is weakly positive and because of CLL there is no telling when she will become negative.
I am very worried.
- If a person is positive it means that the virus is still active and can produce damage in the body?
- If she is weakly positive then why should she be isolated at home?
- If she is still positive how are we going to start venetoclax again, go to the hospital to the haematology day hospital and how are we going to get her transfusions (hoping that sooner or later her haemoglobin will be stable)?
- Will she ever become negative?
Sorry for the long post but I am extremely worried!
Thanks for any suggestions,
Mary
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Marymary19
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It is a well known scientific fact ( John Hopkins University articles state) that some people get what is called long covid unfortunately and all people that get covid shed the covid virus for many weeks , sometimes for months after the isolation period is over.
Long COVID is defined as symptoms without positive tests for COVID after having COVID.
This sounds like chronic infection.
A positive antigen test means that one is likely shedding. A positive PCR does not by itself indicate shedding after the first week or so. A low Ct value on the PCR might indicate shedding, though. Sadly, many PCR tests do not provide the Ct value in the U.S.
Poor mother! And you!I had similar experience. Got infected 13 of April. It took me 8 weeks to "get rid of" covid Omicron BA 2 . In Sweden they value some us immunosuppressed with so called CT value, based on positive PCRtests. Like once a week. It shows how much virus we have. The amount of virus. If we are getting better and not contagious. When you get over a certain CT value level they think it is ok, even if you still test positive. I stopped testing after 8 weeks. Immunosupressed will take much longer to test negative than normal people, they told me.
Well I got a complication directly after Covid. High fever, pneumonia, multiple antibiotics that didn't work, and finally diagnosed COP cryptogenic organic pneumonia. Three weeks in intensive heart care. They never found any whatsoever virus, or germs or fungus in my lungs or blood. A strange inflammatory disease, now under control with very long time Prednisolone that I hope to taper. If your mother had bacteria, it might be faster to get rid of. Hopefully!
As for how to manage the life and drs visits, I cannot help! It is such a hard fight. I am in Sweden, with a ,for me now, working at home health care (blood work 3 times a week) and home service. and friends.
I paused Venetoclax 13 of May,, during Covid, to help the immune system my hemdr said . Probably should have been done earlier. Was on mono therapy, and was Umrd in blood in March after one year of treatment. Still pausing. I don't think my dr want me to continue, as long as my CLL is not making too much fuss.
Also some very confusing advice on the NHS website but just checking they suggest ( for some reason ) that Remdesivir should be second-line.I think I am overwhelmed with information because if I should be unlucky to catch Covid I will probably end up calling everyone and crying ! So 🤞
It's still, after all this time, a bit of a lottery isn't it. Whether, when and what. I haven't heard of anyone in the UK getting Remdesivir, which may mean we haven't got much/ any in stock. Efficacy in trial was as good as Paxlovid.
"Currently, monoclonal antibody treatment of patients with documented COVID-19 within 10 days of symptom onset is limited to sotrovimab (only in regions with <50% Omicron B.2 variant; though this variant is rapidly overtaking the B.1 variant) and bebtelovimab for all patients including those with Omicron B.2."
For Antivirals, they recommend Paxlovid, but also say:
"Alternatives to PAXLOVID in high-risk nonhospitalized patients with COVID-19 include Molnupiravir, Sotrovimab, or Remdesivir. "
Oddly, they include Sotrovimab, but not Bebtelovimab. I think they are asleep at the wheel.
They no longer recommend Convalescent Plasma:
"The World Health Organization, Infectious Diseases Society of America (IDSA), and NIH do not currently recommend use of CCP in COVID-19 infected or exposed patients, including immunocompromised patients, outside clinical trials. "
The do not even mention Chronic COVID on their web site.
There are older case studies regarding CLL patients with chronic COVID infections, and generally repeated doses of monoclonals and antivirals are needed. But the papers don't address treatment as a goal as much as what was tried out of what was available at the time.
In my opinion (I am not a doctor), such cases as your mom will require defining a testing and treatment regimen. Remdesivir and monoclonals, such as Bebtelovimab would be the 2 main anti-viral treatments. But watch out for secondary bacterial or fungal infections, and treat accordingly. I had a secondary bacterial infection that took almost 2 months to clear, and I'm in Watch and Wait. Beware of PCR tests that do not mention a Ct value - not very useful at all. Antigen tests would be better. That's just my opinion.
SARS-CoV-2 evolution during treatment of chronic infection
"...marginal B cell lymphoma diagnosed in 2012, with previous chemotherapy including vincristine, prednisolone, cyclophosphamide and anti-CD20 B cell depletion with rituximab."
"Little change was observed in the overall viral population structure following two courses of remdesivir over the first 57 days."
"In a final attempt to reduce the viral load, a third course of remdesivir (day 93) and third dose of CP (day 95) were administered."
Sadly, the patient ultimately passed away. This was much earlier in the pandemic, though.
Prolonged Severe Acute Respiratory Syndrome Coronavirus 2 Replication in an Immunocompromised Patient
Mantle Cell Lymphoma Long course of Remdesivir in earlier variant.
"Immunochemotherapy for his lymphoma was ongoing and included a CD20 bispecific antibody and a second B-cell directed antibody in combination with cyclophosphamide, doxorubicin, and prednisone. "
"The patient had 3 admissions related to COVID-19 over a 4-month period and was treated twice with remdesivir and convalescent plasma with resolution of symptoms."
Poor Mom!!! Thank goodness the pneumonia and sepsis are gone, phew.When I inquired about being near people after their Covid that are still testing positive, my CLL doc’s NP said people can test positive for months but they’re only contagious when actively sick.
I think this is true for "normal" people, but may not be the case for immune compromised. Not to mention, self reinfection. Plus where are the studies? I think this NP should have qualified that statement, IDK why they would say that. Back in 2020 researchers were saying "immune compromised are *thought to* stop shedding active virus after 20 days". But I am not seeing studies validating this. So IMO the more cautious thought process is to assume self reinfection is a possibility until proven otherwise/patient testing negative.
Marymary19, your profile doesn't say where you live, so it's difficult to make suggestions.
Regarding your questions, IMO:
1) I don't know of any studies where immune compromised people who are still weakly positive are actively infectious or not.
2) There are pros and cons to keeping an infectious patient in a hospital. If the balance is more towards "other patients/staff are at risk" is higher than "this patient is very ill and needs intensive monitoring", in the US at least, one would likely be sent home to finish recuperating.
3) Wait unless and until this is a problem. I know you are trying to be proactive, but her CLL may stay quiescent. And if she's battling low hemoglobin, a period of time to stabilize this might be warranted. IDK where you are geographically, but I am under the impression that blood transfusions are used more for *urgent stabilization*, and continued problems with RBC production would call for Epogen or other RBC stimulating agent.
4) This is really an unknown IMO. There isn't a lot of long term data on immune compromised patients who get Covid, or Long Covid. Unfortunately, this disease is still relatively new, with Long Covid in the US not being recognized/medical diagnosis codes being designated until an emergency meeting June of last year. So this diagnosis has been recognized for only a short time, and we really don't have great answers *yet*.
Preventing/minimizing self reinfection is easier at home than in hospital IMO. Swap pillowcases daily, air out blankets/comforters daily, clean/swap the pillow itself more frequently, wipe down surfaces more frequently, (soapy water will kill coronaviruses, just leave some behind on handles and toilet seats and whatnot), clean/air out slippers or shoes or clothing worn frequently that one doesn't usually clean. Pretend everything is coated in a layer of pollen; how would you remove the pollen? Once the "overall pollen" is removed, pretend Mom is "breathing out pollen". Where is it possibly landing, and what needs to be cleaned? A rigorous process to be sure, but getting the viral load down, down, down means this might be necessary.
I had a MRSA that I needed to vigorously clear up, after an initial mild infection came back more severely mmm 6 months later? It was a major pain to clean *everything* and re-clean certain things, but it seems to have worked. There are different things to clean in a contagious respiratory infection versus a skin infection, but the concept of *clean everything affected* is the same. MRSA was different in that I couldn't use a simple soapy water, I needed a disinfectant that I wasn't happy breathing in. But I didn't have to swap out pillowcases or clean shoe or other surfaces I was breathing on, it was more "anything you touch, or shed skin cells onto". Plus I needed special disinfecting baths for my skin.
Oh me oh my, Sofia! Do I have to be afraid of being reinfected with omicron BA2 after all these time? I haven't been able to clean my house since infected, for more than three months!Seems too late now, or?
Oh Goodness, no! Hahaha sorry if I seemed to say that! The virus dies, and doesn't live on anything inanimate, for months afterward. It's *inside the human* it can incubate and possibly still be infective. If you are over any illness, you are probably over it. And places you coughed it out, will no longer have contagious virus living on it.
All this cleaning is more for people who seem actively ill/showing symptoms/still think they may be contagious. If one did all this cleaning for a week and the patient seemed to improve, IMO it was helping a bit. The sepsis and pneumonia "seem to be over", but a week or so of intense cleaning/wiping might be warranted. Then if symptoms didn't improve (like my skin infection), it probably should be continued/investigated. If symptoms DO improve (like when my partner last had a respiratory illness), then that week of "extra cleaning" was probably a big reason why he recovered a week after he came home/I started doing this, while his dad and sister (who all got ill with the same thing in the same house at the same time), took weeks longer to recover. And his sister was ill for weeks, but recovered shortly after she was reminded to swap pillowcases/air out linens.
This article is more of a "sensationalistic" attempt to grab readers, but does verify that once a week cleaning of sheets is recommended to eliminate germs. So if one is concerned about being infectious, or self re-infecting, swapping/airing out bed linens more often would be helpful. I am trying to find the one where I read about the "daily pillowcase swap" but can't find it!
If you think it's lingering, just swap pillowcases (or at least turn the pillow over nightly), make sure you disinfect toothbrush, and change drinking glass daily, plus wipe bathroom handles. Those are the highest risk IMO. Unlike the MRSA, Covid doesn't linger around for months in shed skin cells. Covid is more "immediate self reinfection" so IMO needs less stringent measures.
First of all I should clarify that I am writing from Italy and right now my mom is hospitalized in Rome.
When we found out on last May 16 that she was Covid positive, I tried very hard to get Paxlovid prescribed but to no avail. I was able to get monoclonals (sotrovimab) , which I think partly helped. In a recent blood test she had lots of antibodies while after the second booster shot (all four Pfizer) she had not developed any antibodies.
I am actually still wondering why a person with so many antibodies could still test covid positive.
At any rate when we discovered the pneumonia we started therapy of multi types of antibiotics, which did not help to eliminate the fever. In addition she was doing Prednisolone infusions (40 mg twice a day).
When the procalcitonin rate went up then we rushed to the hospital.
Even in my mom case, as happened to Chistina, the doctors of hospital did not find any whatsoever virus, or germs or fungus in her lungs or blood but they treated her with three types of antibiotics and an antifungal that lowered the procalcitonin. However, the doctors were telling me that she continued to have ongoing inflammation. They thought it was the covid so they started redemsvir, which seemed to have worked in that the inflammatory state improved.
As for the covid tests, it seems that in Rome hospital docs use antigen test with Cut Off Index. last Thursday had a value of 28. They usually do a test every week, but in the case of immunocompromised people they also test every three to five days. So they decided to repeat it on Monday.
They told me that my mom does not have a very high viral load so they proposed to discharge her. They scheduled an appointment for me on Monday with the “Prof. Dr.” head of the infectious diseases department to discuss the issue.
On the Leukemia side , within two weeks of stopping Venetoclax and after the bombardment of antibiotics and cortisone, his hemoglobin dropped down to 7.4 and, as recounted above, she needed several transfusions (later is she going to get one more).
Of course, I was in constant contact with the hematologist. He claims that the drop in hemoglobin is a consequence of the bombardment of antibiotics and thinks that once the antibiotic therapy is discontinued it should slowly rise again. I really hope so but today she needs again a transfusion and I am feeing so worried and sad.
Have any of you had a similar experience during an antibiotic treatment?
The hematologist asked the hospital doctors for a tomography of the abdomen to understand the size of the spleen and the situation of the lymph nodes. The hospital informed me that they hade a total body CAT for her last Friday and they will update her hematologist tomorrow.
SofiaDeo, I fully understand there are pros and cons to keeping an infectious patient in a hospital.
On the one hand, I am happy if my mom finally comes home, but I am worried that she is still infectious. In Italy when you go to a hospital for a checkup, a visit, a test you are subjected to a covid test at the entrance or you have to sign a self-declaration that you are not covid positive.
How do we do that if you need a transfusion? What about the blood tests?
If no doctor assures me care after returning home, how can I help my mom?
Lastly, her positivity scares me.
My best friend (he had CLL too) died in 2021 because of Covid (he was in treatment with Loxo) . I have also read articles of immunocompromised people who are eternally positive and some eventually didn't make it....
SeymourB, what does chronic covid mean? do we have to live forever with leukemia and covid?
Thank you all again and a warm greeting from Italy
I think your mother is better off as long as she can stay in the hospital. If possible. At least until it feels safe for her, until she is stronger, and doesn't need so much medical care.
It would be a lot of strain to take care of her, for you, and big responsibility. You need to have medical care and back up close to where you live.
When I came home from hospital, I had help from my sister living with me for first week week, then my daughter for another week. Now I have a nurse coming home for blood work three times a week (thrombocytes), and home care for washing up etc 1 hour twice a week. I live alone, but also have heart failure. I live 20 minutes ride from the University hospital, I can get hold of hematologist, cardiologist and lung doctor, at least in week days. Or ER.
At the hospital, during all the antibiotics I fell to 8,7 ( here we say 87 I think) in hemoglobin. They were talking about blood transfusion, but I never had to get one. Slowly rose. Now three weeks at home I am finally up to 11,0. I love to eat, and to be home. It is hard to balance. I also have problem with my thrombocytes, has had for a long time, so that is a complication for me right now.
Oh so much Prednisolone for your mother! I started on 40mg, tapered to 30mg which my heart barely could take at home, so now I am on 20 mg until big lung pet scan on Friday.
If that shows good signs of no inflammation, I can continue tapering. No fever since long and don't cough anymore.
Ask the drs about COP diagnose. If that is a possibility the Prednisolone has to be tapered slowly. During at least 9 months they told me....But I was on low dose Prednisolone to start with.
Antibodies alone do not prevent us from contracting an illness. There are other parts of the immune system in play, as well as the Covid variants ability to mutate to decrease the effect antibodies have.
The doc is probably correct that the infection treatments are what affected her ability to produce hemoglobin/RBC's, since many of them can. So getting off them will probably see a rise in those indicators. If you know the names of those drugs, I could research "how likely" they are to affect any blood components, and for how long, if there's reports published.
It's scary to "need infusions". As far as getting in & out of the hospital, if it were me, I would have a doc at the hospital write some kind of letter for me to carry, as well as a note or Order in my chart, that yes, I *was* Covid positive, but also *was* allowed to be admitted into the area. My *Covid positive* status is because of being an immune compromised patient, not that I am actively infectious. I need access to continued treatment, with me wearing a mask at all times. The letter or note or whatever to carry around, is to show any Security people attempting screenings/trying to prevent a "Covid positive" person from entering. If they balk, the order in the chart is there. Then you say something like "call the Charge Nurse, have them check the chart" if Security doesn't want to believe the letter. Insist they call the Charge Nurse, instead of turning you away. Can you ask the Infectious Disease people, or other docs, to notify Nursing/Security that this is going to be done? Whoever is Charge Nurse for the hospital/clinic on any particular shift, can then access the chart, see the doctors order to let your Mom be allowed in even though Covid positive for continuing (especially urgent) , and can override Security. This should be faster than trying to reach doctors. There is always a designated Charge Nurse for every shift, in a facility, who can access a chart. And with more patients who will be in this situation in upcoming months, the facility probably needs a policy like this to address the issue for everyone, not just your Mom.
If she is infectious when coming home, IMO it's not the "self infection at risk for another severe disease", it's more "self infection that prevents Mom from fully clearing the virus." Because if she were really sick/infectious, I doubt they would want to discharge her? I don't know your country's systems so of course I am just guessing.
Hi SofiaDeo, I could not find out the names of the antibiotics. However, the hemoglobin situation is getting worse. She had to have a transfusion after two days. The hematologist does not want to see her because she is still positive. This time, after so many battles during this journey with CLL, I don't see a solution and don't know how to ease her suffering
Thank you Christina and SofiaDeo for replying me. The Last News is that my mom ist still positive and morover the docs are thinking that she developed myelodysplasia, which explains the low hemoglobin. No hematologist wants to take care of her because she is positive. I am desperate because I don't know how I can help her get out of this nightmare. Greetings and all the best to you
Hello Maria. I have about the same experience. I am being treated with Venetoclax and I got sick. Hospital etc 90 days I was positive. There is no large load to risk or transmit. Of course we always take precautions. Do frequent nasal washes with similar water from pharmacy. Of course, I also had a problem going to the hospital while I was positive. I also had a disturbance in the blood tests, but they soon became ok. 2 months ago I finished the treatment after 1 year and I am completely fine. Be patient and everything will be fine in the end
I've been to another hematologist at the hospital where my mom is hospitalized and according to her, there is nothing more to be done because after all the treatments done (first ibrutinib and then venetoclax plus rituximab) the marrow doesn't work anymore. This death sentence has plunged me into absolute despair.I wish everyone all the best
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