Update to My Original Post Stopping Acalabrutinib

[Fulart]

I had pneumonia dx mid Nov and had received antibiotics 3 times in 1 1/2 months, yet still was not well or improving. My GI tract was in an uproar, and I was losing weight far too fast. With my hematologist onc agreement I stopped Acalibrutinib for 1 week, and had a CT Chest scan. Wow, the results show that I have a 3.5 cm lung abscess. The Pulmonologist believes that my CLL lymph nodes crunched down on my lung and did not allow it to properly drain mucous. So with this abscess seeping bacteria back into my lung no wonder I could not improve. The plan now is to have a CT scan image guided needle biopsy ASAP to identify the bacteria or fungus that’s feeding the abscess. He’s even ordered flow cytometry and cell count. I can’t wait till my infection farm abscess is id’d and done away with. It’ll likely take 4 to 6 weeks of antibiotic pill popping. Since I will be having an invasive needle biopsy, it’s good that I stopped Acalibrutinib. I will go back on it with my dr’s approval. I believe that my GI tract was out of balance due to the antibiotics, as many of you suggested. I will have to find ways to keep myself well nourished-battening down the hatches for a 4 to 6 week course of some serious medication.

Thank you all for your support!

[cllady01 Former Volunteer]

Sounds like you have a good medical team working with you. So glad the source is being investigated and handled ASAP. Sorry for the long slog that has had to wear you down at this point.

I know the prospect of more antibiotics concerns you---just see if you can get ahead of the game with imodium or a similar med. and keep hydrated. It may call for antiviral meds, and in some cases, IV administered doses is the practice. Of course, I don't know what your situation is. I just hope all goes well and you can get back to some normalcy in your life.

Thank you for keeping us updated. Best wishes as the biopsy gets under way and you learn what is needed from that point. Hoping for relief for you.

[Fulart in reply to cllady01]

Thank you for the reminder of Imodium. I just put it on order, plus mucinex sinus relief. I’m having pounding headaches with this so I need to ramp up liquid intake to loosen mucous.

[sllincolorado]

Not sure if this was mentioned in an earlier post/thread but if they decide you need more antibiotics ask them what you can do to minimize your risk of c diff. I had it 40 years ago when it was less prevalent because I had taken a series of antibiotics - I did not get it from being in a hospital, exposure to someone with c diff. Not a lot of fun.

I do not think you will get c diff but might be a good precaution to ask a gastro exactly what you should do.

[Fulart in reply to sllincolorado]

I didn’t know about c diff. Thank you for the heads up!

[bachplayer13]

very scary thank you for posting about this!

[Yarwis]

Best wishes and good luck for a good recovery xx

[studebaker]

Good morning Fulart, your story and how you are able to deal with it deserves admiration of your great strength and sense of humour.

You are in my prayers and hopes for getting over this obstacle 🙏🏻

As far as the woman passing her ignorant views on about something she knows nothing about, you are smart to ignore it and limit your interaction with her and people like her.

I also limited my exposure to people with know it all attitude as they have tendency

to bring me down and at the beginning I tried to discuss with them, but decided it took too much energy so it is better to spend my time with supportive, understanding friends.

Good luck to you 🤗

Dana

[pkpayne]

You've been down a rough road. Prayers that it smooths out for you soon! Best wishes.

Paula

[Doggoneit101]

You may want to ask your doctor about taking probiotics. With all the antibiotics you took C-diff would be my fear. I had C-diff one time when I had to multiple antibiotics and it was an absolute nightmare!! They say hospitals are loaded with germs so wash hands frequently and make sure everyone that touches you does the same. I lost 15 pounds when I got C-diff. Praying for you to get better soon.

Sherry

[Fulart in reply to Doggoneit101]

Well the best laid plans. I got admitted to the hospital yesterday evening. My fever spiked quickly to 100.3, so in I went to ER. They had to make room as they were packed. I have a hem onc team working with radiation, but they couldn’t get the body team together for the CT image guided drainage on Fri. They are talking drainage first and foremost. They will be working on me Monday. I’m getting IV Antibiotics, lots of them. My fever is holding at 98.5 now, but scary how fast things go. Hem Onc says with my disease, it could be any number of infections involved. They will try to pin it down, but are concerned if I went home and waited for an outpatient needle biopsy. I’m here over the weekend in a semi private room. I’m not complaining

[Justasheet1 in reply to Fulart]

Fulart,

So sorry to hear about your setback. I’m glad you are satisfied with your “hotel accommodations “.

Hang in there.

Jeff