So after 19 cycles on the 3 drug arm of my trial at Rutgers O+V+I. I am done with all medication. I have to be honest it ended on Sept 29th but have been so busy that I have not been able to update you all. I am officially in remission. Still waiting for MRD status but I will take what I can get. The side effects of the trial are slowly fading away. Now I get to concentrate on the after effects of COVID and try to get back to work. If i can help anyone or answer any questions I will try my best.
WBC 6.7
Platelets 268
Lymphocytes # 1.150
Lymphocytes % 13.2
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Coolerjoe
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I started feeling sick around 3/18 went to my primary care doctor and was diagnosed with a sinus infection. Was given a antibiotic prescription. My wife noticed i was declining over that weekend sleeping for 18+hrs a day. She called her sister who is a MD. She told my wife to get a pulse/ox reader. When she placed it on my finger i was reading 83. We were told to get to the hospital. I entered the hospital on 3/25 and do not emerge till 4/9. I was treated with a zpac of antibiotics and also hydrocloriquin (sic). To control Covid. I was doing well after 5 days and thought the worst was behind me.
Then the Cytokine Storm hit causing my immune system to attack my healthy cells in my lungs. I was given a drug called actemra and my wife was told it was a Hail Mary drug and i had a 50/50 shot of survival that night. I was the placed on Hiflow oxygen at 6L flow rate. It took me another several days to recover enough to be real eased home. I was then on 2L of Oxygen 24/7 for around 6 weeks and slowly weaned myself off if it.
I was told by my oncology team that was administering my trial that if i could not get off of oxygen within six weeks of when i stopped taking my meds while i was in hospital i would be released from the trial.
So that was my motivation. That’s exactly what i did and resumed my trial meds after that.
I have mild restrictive lung disease from Covid and i have issues breathing when stress is put on my lungs. EG: climbing flights of stairs or lifting large objects.
Sorry for the long winded response but it is still an ongoing adventure.
No apologies necessary. You have a story that we all need to hear. So sorry you have been impacted by Covid. It is more of a miracle that your CLL is in remission after knowing you were able to get treatment for the Covid that at least stopped the initial threat and allowed you to continue the CLL treatment. I do so hope you can reach a more comfortable healing of you lungs as time goes on.
You are in my thoughts as you now have some time to be off any CLL treatment. Please, as you feel like it, keep us posted on your overall progress. Here's hoping the progress continues and you can get back to work sooner rather than later. Right now, with the numbers rising, it is most likely best that you are not back out into the workplace.
Best wishes for a lot of good, restful, peaceful and happy family time.
Congratulations on the great numbers for your CLL. Thanks so much for sharing your experience with Covid. I happy for you that you kicked it in the butt.
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