Finished Venetoclax, then Covid

[Healmenow]

My doctor prescribed Venetoclax after two rounds of chemo/immuno infusions to fight CLL. I felt great! Swimming half a mile, felt strong. Then bronchitis, pneumonia, and Covid. Was hospitalized and released in 6 days. But my home convalescence is not what I expected. Weakness, coughing, general severe malaise. Anyone know about the post Venetoclax (heavy immunosuppressive) season. This has been brutal.

[SofiaDeo]

I am not exactly sure what you are asking. Covid can affect one, whether or not one has had venetoclax treatment. Who gets severely ill from Covid, and for how long, has no absolute measurement parameter. Other than immunized people overall tend to have fewer hospitalizations and severe outcomes compared to non immunized groups.

The extend of immune suppression by the venetoclax can be measured a bit by labwork (neutrophils, T cell counts, immune globulin levels) but there's no absolute correlation of those numbers to if, or how much, someone becomes ill or remains ill.

[MrMidnight]

Sorry to hear Covid has laid you so low. How long is it since you had it?

[Sepsur]

Everything you are experiencing could also be as a result of having Covid - numerous virus can leave people with what is described as post viral syndrome.

medicalnewstoday.com/articl...

[Dawson21]

Sorry to hear that. Hope you recover soon. I went down the same path, fully vaccinated and took Paxlovid for Covid with immediate positive effects. A bit muzzy in the head but almost normal.

[LeoPa]

Could it be long covid?

[Skyshark]

I got a persistent cough Xmas 2019, the worst lasted about 2 weeks but after a month it was still there and waking me up at 4am. I went to the GP got a nasal steroid spray.

After that I get breathless when I exercise. I used to swim 400m breaststroke in under 11 minutes, now it's over 12 and a half. I can't do a 400m set straight off, I have to do 200m and take a rest as my chest starts to feel painfully tight but then I'm good for another 4 sets of 400m.

Cycling I can't get past 2 miles without a sit down (there's convenient bench at a bus stop). Then my pace is down to 16 km/h and it used to be 20 km/h.

Even walking, I've had to slow down or I get breathless.

Nov 2022 dx CLL. Started VenO treatment April 2023.

CT scan has found I have "ground glass" lungs. This is a typical finding with "long COVID". There isn't a cure.

[Healmenow in reply to Skyshark]

So, so sorry

[CoachVera55 in reply to Skyshark]

I’m very sorry to hear all you’ve been through, may you reach a level of peace…

[onu1tadi2]

I am not a doctor so am just expressing my view. I started CLL meds at stage 4, 6 years ago at age 72 -- I look younger, was working at a professional job at the time. Am now on mono therapy (no idea why not dual...they have not given me a clear answer), and have not had any severe symptoms. I have not had Covid or Flu vaccines, I live my life as normal, but wonder why you would swim half a mile? That seems like over taxing your system which is compromised by strong drugs. It is important to take walks or do some exercise for sure, and also eat well etc. But rest also important, and testing one's limits as a no no as far as I am concerned I have not had any strong debilitating symptoms from taking Venatoclax. Just suggesting that one should be gentle with oneself, while also exercising daily or maybe 3 or 4 times a week. That is my formula. Have not had Covid or flu. I hope you get well rested, eat well and de-stress, as one's overall health is not the same as before starting COVID treatment. Good luck, and please forgive me if I am just butting in.

[CoachVera55 in reply to onu1tadi2]

Very good points, bravo. My humble opinion for pushing your limits is probably a desperate fight to keep things as they were, well that was my case anyway. And you are so right, we are in a different situation where we must be gentle with ourselves. Thank you for that insight…

[mickimauser11]

I had Corvid too but I’m off all meds since March 22 and have a similar experience with Corvid.

[CoachVera55]

When I got Covid April 2021, my son shedded on me. Meaning he was well, got the vaccine, became symptomatic & passed Covid to me. He didn’t believe in this ‘shedding business’ either. So we both had the 48hr test & then the Rapid Test. He was neg for the Rapid but I was Positive. We were both positive for the 48hr one 🧐

Anywho it was brutal, he coughed all through my home saying it was just a Sinus infection. Then I developed Sinusitis symptoms in a week but by day 10 it went right to my lungs. I had antibiotics, Tylenol & a Nebulizer. They held it back for another 3 days, then it hit me with a brick 103.8 fever that would not break & I was producing so much mucous that my diaphragm & ribs were sore. I was drowning while on fire, so sure I was gonna die.

Went to the ER & they did not want to do anything, told me it was Covid, folded their arms & shrugged their shoulders while standing 6 feet away. Told me my Pulse Ox was good & I demanded an Arterial Blood Gas which showed I was drowning & then they wanted to admit me. I again demanded IV Steroids when I could get breathe enough to utter any words. Left there & got Monoclonal Antibodies from NYU. Came home & had a Come to JESUS Moment in which WE established that I was not dying. Started the Flu Bomb - a natural concoction & that is when my fever broke & did not come back.

My body started to fight back & I was on my road to recovery. But my Pulmonologist said to do nothing for 90days. He said just take the best care of yourself & do not get reinfected. He said no bloodwork or xrays for 90days because then we will be chasing something that does not exist. I was still in W&W at this point. Bloodwork done in 60 days because I had a prior Onc appt, was totally different from my usual bloodwork, I even questioned if they had a mix up. My numbers were normal🤷🏽‍♀️

I can not relate to your situation but just lay low, rest, hydrate & don’t get reinfected. Many want their masks off & good for you but me, I want to stay virus, flu, RSV & Covid free so I stay masked & double masked. I have PTSD from these ER episodes so that is the last place I want to go… #GODSPEED on a full recovery 🙏🏾

All Natural Remedy, delete honey if diabetic or garlic if low blood pressure

[AussieNeil Partner Administrator in reply to CoachVera55]

CoachVera, with respect to your statement. "Meaning he was well, got the vaccine, became symptomatic & passed Covid to me. He didn’t believe in this ‘shedding business’ either.", that seems to me that you are implying that your son developed COVID-19 from his vaccination? To reassure you and other readers, none of the approved COVID-19 vaccines are live (attenuated) vaccines, so it's impossible to develop COVID-19 from any approved COVID-19 vaccination. Of the well over 100 vaccination developments world wide, I think only two undertook live attenuated vaccination research efforts and none of those were in the USA. The vaccines only use the spike protein from the SARS-CoV-2 virus, not the entire virus, thereby teaching our bodies how to recognise the virus without the possibility of causing an actual infection.

Neil

[CoachVera55 in reply to AussieNeil]

I can only speak on my own experience Neil. I also know that nothing is impossible in life. Many things have surfaced with the Covid 19 vaccine & that is why I never will take it or trust it, but to each their own. It was once said that you would not get covid once vaccinated then they walked it back to ‘you’d get less of a chance of being hospitalized or deathly ill’. Even at one point they were not testing people in NYC who were vaccinated but when they did, many of those same vaccinated people were testing positive. Its been a learning process for us all but I stand on my experience with that monster…

I have taken the Flu Vaccine for 30+ years with no ill effects & I may take it again but none of the others. I make healthier choices, live alone & stay masked when out & about. I learned from Infectious Disease doctors to even be aware of mold, mildew & mask if gardening. I take my precautions because an ounce of prevention is more valuable then a pound of cure. I have strong negative feelings about the Covid Vaccine but I will not air them here, its not a debate I want to have.

Happy Holidays All & Stay Safe🎉🎉🎉

[BobbyFour in reply to CoachVera55]

I don’t want to get into a vaccine argument either, especially on Christmas Eve. But I will say that whoever told you that a) you couldn’t get covid after a vaccine or b) couldn’t test positive for covid when you got it after a vaccine, didn't know what they were talking about. That simply is not how any vaccines work. They ‘teach’ your immune system to react hard and fast against whatever disease they are protecting against. Unfortunately for us CLLers, that ‘hard and fast’ might only be ‘gentle and slow’ since our immune systems are impaired.

I don’t know much about the other aspects of the covid vaccine except what I read, and I am not a molecular biologist. Some of my son’s friends are, but I don’t understand a word they say 😂. But I do know those two statements that people told you are completely false.

I agree with you completely on prevention. Vaccines are like a second line defense, the first line is not getting it at all! Now that winter is here and things are moving inside, I am hunkering down. Fortunately I have lots of hobbies, and lots of outside spaces to get out when the weather permits (or even when it doesn’t, but the dog is making me 😀). My neighbours and friends have been great too, one set just caught colds and quickly cancelled our planned get together. I am fortunate in so many ways.

Happy Holidays to you too coach!

[CoachVera55 in reply to BobbyFour]

You are indeed fortunate as am I, with at least the ability to minimize your exposure to infection. Yes first line of prevention is what so many miss to their own detriment. I wish more focused on that aspect but again to each their own. I can not go out unarmed knowing that there is a roaring lion out there ready to devour me, hell no. I can fight literally & figuratively but rather conserve my energies for the good stuff in life. That once daredevil me has been rooted out, calm & easy is my motto now lol. ENJOY BobbyFour🎉

[AussieNeil Partner Administrator in reply to CoachVera55]

CoachVera, please appreciate that we endeavour to keep the content of this community evidence based. It's equally impossible to put a car part in your garage and then later drive out a fully working car, as it is to shed a live virus from exposure to a virus protein!

Likewise, we've known from right back when COVID-19 testing was rolled out, that the test results indicate whether the tested person was exposed to a live virus, or a vaccine. Simply put, COVID-19 PCR tests check for the presence of antibodies to the spike protein and the protein coat (nucleocapsid). If someone tests positive for antibodies for the spike protein and not the nucleocapsid, they developed antibodies from a prior vaccination/booster. They can't develop antibodies to SARS-CoV-2 protein coat unless they've had COVID-19.

Vaccination is a valid and very important part of the "ounce of prevention", which is why CLL specialists universally recommend them unless someone with CLL has specific, valid reasons to avoid them, such as the risk of anaphylactic shock. There's a huge amount of misinformation/disinformation about the mRNA vaccines which has been spread by those with vested interests. If you don't trust the mRNA vaccines, but trust the flu vaccine, then there are effective alternatives to reduce the risk of serious illness from COVID-19, such as the Novavax vaccine.

Neil

[SofiaDeo in reply to CoachVera55]

A speech writer for Pres Biden once had him mistakingly stating the Covid vaccine would *prevent* infection, instead of *decrease* infection. This does not equal "they told us it would prevent it" and you of all people, as an RN, would know someone simply misspoke. One time. No other valid medical researchers ir scientists ever said this. However, quite a few people did choose to deliberately twist this around so it's not surprising to me that you heard it. What surprises me is that you gave any credence to that nonsense.

"Nothing is impossible in life" is ridiculous, there are quite a few things that are impossible.

It's impossible for a vaccine that is not live or attenuated, to "infect someone" or "shed virus". It's much more probable that your son picked up highly infectious Covid from somewhere, possibly even where he got the vaccine. Please stop with repeating this blatently false statement, you've made it before and been asked to stop.

A vaccine that contains only a tiny part of a virus to stimulate a "foreign agent" reaction in the body, absolutely cannot somehow hijack our cells to make our body assemble a complete living vaccine from the one small part. You need a live or attenuated vaccine, containing actual whole complete virus units, for this to even be possible. Our body can copy something that is there (which is what most viruses do, they hijack our cell's DNA & make it copy the virus) but we don't have the ability to build up foreign complex structures from a random small part. I like the "car part morphing into an entire car" analogy hahaha!

[CoachVera55 in reply to SofiaDeo]

Again I do not want to debate over the Covid 19 vaccine since its no longer mandated in NYC where I live. And please do not tell me ‘of all people’ what to accept as my personal choice. I don’t understand the hostility but we can continue this discussion privately if you like. I will not mention the Covid 19 vaccine again altho I do not recall being ask not to before. I will never push any false narrative but many things that was once deemed ‘impossible’ is happening, just continue living & you will see. Science is ever changing that’s why its deemed the ‘practice of medicine’, no one will ever master it!!! GOD is the Master Physician 🙌🏾

Oh Dr Fauci is where I got my information from as I recall…

Happy Holidays Sofia🎉🎉🎉

[SofiaDeo in reply to CoachVera55]

Apologies if I am coming off hostile, my comment was meant along the lines of "you have taken classes on this" and I am surprised! Not meaning hostility, I am sorry that my choices are coming off like that! Looking back at it, it does seem snippy I will try better to modify posting in future accordingly, this is a large group of relative strangers & I am guilty of not always taking that into account, I just "post". I agree that if you can't see my face, or tone of voice, you are right to question how it posts. Happy Holidays to all!

[CoachVera55]

Apology accepted!!!

I think in view of what we all deal with, it’s understandable to be a bit punchy especially in my case, so sorry as well. I am just so done with anyone telling me how I should see something, feel about something or even know, without knowing me. I have always been put in boxes that I clearly don’t fit. This whole journey reinforced those facts. Kept hearing how 90yr olds have done so well or the BTKs or many go off for weeks, well neither of that fits my profile.

Covid in my experience is as volatile a conversation as politics & religion so I attempt to avoid them at all course. I am slowly take back my life & taking no prisoners. I listened to so called experts & it did not end well for me so intellect & divine intervention is what I rely on. Besides what works for one doesn’t necessarily work for another regards of all the scientific facts available.

Just an FYI, I am also super sensitive to anything I feel may be bulling, we are all grown with our own views. And we do not have to agree. I lost a lot of loved ones to Covid & Cancer, I miss them everyday but even more on holidays. 3 dear childhood friends who will not be entering 2024 with me😞

Again Enjoy the Holidays🎉🎉🎉