Bloods Stable.

[Maya2007]

I'm writing to convey my relief after finding out that my 6 monthly bloods are stable.I was naturally quite anxious about his my blood levels were going to be effected by my recent COVID infection from which I am thankfully fully recovered Every win no matter how small means alot when we have CLL.Feeling very relieved to be able to relax over the ⛱️ summer.(hopefully)

[Sanders9]

So pleased your bloods have not been impacted by Covid infection. Enjoy the summer

[Maya2007 in reply to Sanders9]

Thankyou.Feeling v relieved.

[Walkingtall62]

Just what is needed. Well done

[Maya2007]

Thankyou. 😁

[Poodle2]

It's always a relief when your numbers are good. Enjoy the summer...and you even recovered from covid. Life is good 🙂

[Maya2007]

Thanks Poodle.Will make the best of the situation.🥰👍

[CoachVera55]

I just read that there is another Covid Mutation that will explode over this Summer especially with so many feeling that Covid is completely gone. Stay Safe 🙏🏾

[Maya2007 in reply to CoachVera55]

That's scary stuff. Will definitely remain vigilant.Had my booster couple of weeks ago too.Hope you're keeping well.🥰👍

[CoachVera55]

Thanks, yes I am doing well infection wise even though I just stay masked, it seems to even work well with my allergies. We have to do our best at what works for us. Our approaches may differ but the results are what matter.

I however am having severe bone/joint pain. I put on these 40lbs with all the steroids I was prescribed instead of just simple antibiotics in the beginning. It affected my heart & lungs which prevented me from working out for 8 months. None of my doctors would prescribe antibiotics & I suffered for 3 months. Some blah blah blah of drug resistance with antibiotic abuse. How can you abuse it if you are not even using it? Anywho, I had 2 infections this first year of BTKI treatment. When I started & when I increased the dosage, pretty much text book🤷🏽‍♀️

Now I have bone on bone from a 2011 Malunioned Hip Fracture & a new Right Foot Arch Collapse PTTD. I have back pain too. So I got the Rolling Walker since its a Bilateral Injury, I must walk to get this weight off & falling is not an option lol.

So I was rocking with what I feel is a temporary set back & my labs were amazing on 1/2 dose of Zanubrutinib. But then comes this Left Lower Lateral Stabbing Rib Pain 10/10 & I was losing my composure. I remembered that my CLL Specialist suggested stopping the Zanubrutinib to see if the pain subsided (before the rib pain) & I said ‘hell no so I could have 2 problems’.

I have since considered a compromise of dropping down to 80mg daily instead of twice daily. And waalaa the pain dropped to 5/10 from that dreaded 10/10 the first week. And it’s actually down to 3/10 moving into the second week at this dosage. Well CT Scan today & I see the CLL Specialist for labs & more ideas tomorrow. You must stay alert & monitor how your body responds. Enjoy the Summer & Stay Well🙌🏾

Most common side effects & rash too, so my ailments are well documented.

[Maya2007 in reply to CoachVera55]

Coach Vera.Im so glad you appear to be doing really well on your treatment after such a rocky start.I know what you mean regarding the prescription of antibiotics.The medical world often doesn't appear to be proactive in that regard as they are hellbent on cutting back on antibiotic use owing to resistance within the population.It would be great if there was more medical awareness re the urgency in treating infection for us CLL folks.Thank you for your good wishes.I continue to be careful and avoid crowded settings and poorly ventilated places.

Good wishes.

Maya .🥰👍

[Maya2007 in reply to CoachVera55]

COVID is indeed a very sneaky virus.It would appear to have been brought into our house by my daughter who is studying early years teaching.She complained of feeling a bit tired 😴 and low in energy however no symptoms of COVID and tested negative.A few days later she had positive test.By that time we had all been exposed to the virus and we all succumbed to it like a deck of cards.So worrying when the virus can be spread so effectively before onset of symptoms.

[CoachVera55]

Yes Covid is the devil. Same here, my son was having what he called ‘allergies’ that 1st week & as his ‘allergies’ were resolving. I became symptomatic the 2nd week & by the 3rd week I was fighting for my life with a Cytokine Storm of Mass Proportions. 103.8 Fever that would not break & tons of Respiratory Congestion. I was Drowning while on Fire 🔥 Scariest time of my life!

I am not stable on Zanubrutinib now, I had to drop down to 1/4 dose for 2 weeks because of that Left Lateral Extreme Rib Pain. Its down from 10/10 to 3/10 & my labs are still looking good. The CLL Specialist & I differ on what the CT Scan looks like to me. She feels its fine & I see Congestive Heart Failure Signs. Apparently its still affecting my heart. The bones, heart & lungs feel better, Neutrophils are way up, Hgb & Plts holding, WBCs up 8->12. My question is how long can I stay here before them WBCs shoot up & affect my Hgb & Plts but there is no way to know. She reluctantly ordered another Echo. I also just noticed large lymph nodes under my neck 😭

This is what related to my symptoms!

[Maya2007]

Yes COVID is a very real threat to us when we suffer from CLL. It was just announced on our local news that the latest variant Flirt is now with us.🥴.You cert went through a hellish time with covid.That must have been a terrifying experience for you and your family.Thats great that your rib pain is resolving.👍.Great that your labs are looking good.Hopefully you will be able to increase your dosage of Zanubrutinib in the future and be able to wave goodbye to those lymph nodes.🙏.Thats great that you have the capacity to advocate for your health with the benefit of your nursing knowledge and expertise.You have been through alot and are a true warrior.Wishing you well.🥰