Frustrated in KY

[Caringagain42]

My 79 year old dad has CLL. He began having severe abdominal pain. It doubled him over. We went to the ER. They ran X-rays, a CT, and did tons of bloodwork. They were unable to find anything that could be causing the pain. They sent him home with Norco. We went back the next day. They ran the same tests again and still found nothing. This time they admitted him. He’s now been in the hospital for a whole week. So far all they have discovered is a bad yeast/fungal infection. He’s been on heavy antibiotics for 5 days and is still in pain. They still keep doing X-rays and CT’s. He should glow in the dark if he ever gets out. Any ideas?

[cllady01 Former Volunteer]

So sorry this is happening to your father. I'd ask about giving him some antifungal meds. Fluconazole, an antifungal is one that is prescribed for Candidiasis of some species. The problem is there are several species of Candidiasis and the need is for tools to find the difference because not all will be reached by a given medication.

If an antifungal has been administered in hospital but failed to work, your father needs a differential diagnosis that will give the species of invasive Candidiasis and/or fungal invader so treatment can be specific as possible.

Ask about having an Infectious Disease Dr. see your father's bloodwork and help to investigate as to the specific infection.

I see that your father is in treatment with Ibrutinib, so be sure his CLL specialist is informed as to his current status.

Best wishes. And please keep us updated as you get further information.

[AussieNeil Administrator in reply to cllady01]

To which I would add that antifungals can take a while to work, particularly when the patient is immune compromised.

[Caringagain42 in reply to cllady01]

Thank you for replying. An infectious disease doctor has been consulted since they realized it was fungal. He’s been on Fluconazole since then. He was discharged last night with a prescription for oral Fluconazole. He is still in pain, though not as bad as it was to begin with. His Oncologist/Hematologist is aware, but we haven’t seen him.

[cllady01 Former Volunteer in reply to Caringagain42]

Oh, that sounds like they are on the right track, then. As @AussieNeil has said, it takes awhile for the antifungal to do its work.

Here's hoping it will clear up the infection and thus his pain. I know a caregiver dealing with a loved one in pain has emotional pain and a lot of concern for getting everything right. Be gentle with yourself and get as much rest as you can--sleep is important to keep yourself healthy.

If you have other family members who can help with the caretaking it would be good to ask for some help to have some time to yourself? I do hope the medication works well and gets him back to no pain.

[Soundsinamotion]

I’m assuming scans and X-rays would show some sort of blockage in his intestines. My father had bowel blockage and they had to operate because he was doubled over in pain. I’m sure the doctors would have been able to see that in scans?

[Caringagain42 in reply to Soundsinamotion]

He’s had 4 CT’s in the past week. No blockage. I thought that too. He’s had so many surgeries, that it very well could be more scar tissue that is hiding. He had esophageal cancer and had nearly all of his esophagus removed in 1994. My mom lived 9 years with ovarian stage 4, so this isn’t my first rodeo. However, this is the first time no one can figure out what’s causing the pain. I agree, I think he needs an endoscopy. The insurance company won’t pay for an MRI, until he’s had some PT to see if it helps. Ha. Insurance.

[Soundsinamotion in reply to Caringagain42]

Well I hope you guys figure out what’s causing his pain soon so he can feel better! Sending you good energy!

[beanlake14]

No doctor, of course, but perhaps endoscopy? He’d have to be knocked out, but they could look around better. If there was anything there, they could biopsy. My secondary cancer was stomach, but my tumor did show up on my CT. The endoscopy confirmed. Please let us know

[Ptown]

Hello, it is always so disconcerting and unsettling when our parents fall ill. So many of us can relate to your situation. I am so glad to hear that your dad is feeling better and the doctors figured out the issue. Hope you can get rested up. Sending support from Michigan. Carolyn

[Sepsur]

Had all sorts of discomfort after ICU - sort of put it down to feeding tube, scars from trachy etc etc - over a 5yr period it moved from disagreeable to darn right uncomfortable - eventually, after endoscopy, discovered hiatus hernia

webmd.com/digestive-disorde...

[Smakwater]

Diverticulitis?

Any amount of fever?

JM

[Caringagain42 in reply to Smakwater]

No fever

[Smakwater in reply to Caringagain42]

Antibiotics should be revealing within 48 hours. Pain from infections and diverticulitis do not always present a fever.

[danimal7777]

I had a similar experience a year ago while taking ibrutinib (Imbruvica). Every few weeks, I'd lose my appetite and break out in terrible lower right abdomen pain with a fever. Finally went to the ER, and they thought it was appendicitis. Exactly the right place for the pain, and the fever supported that premise. But after a CT scan, they decided it was Covid. Then after a Covid test, they decided they couldn't diagnose it.

My oncologist had me stop the ibrutinib, and the attacks stopped and didn't return. After about 5 weeks, he started me on acalabrutinib, and those symptoms never returned. The abdominal issues remain unexplained, but I felt immensely better and far more energetic while holding the ibrutinib. My oncologist indicated he has seen that side effect before, but it isn't common.

That was 11 months ago, and I'm extremely grateful for the relief.

This may have nothing to do with your father's circumstance. I'm unfamiliar with fungal issues, although I realize the immune suppression makes us more prone to them. Best of luck to him!

[Caringagain42 in reply to danimal7777]

He’s been off Imbruvica for about 3.5 months. He was in it for 6 months with so many side effects. Heading to his pcp tomorrow. Thank you for trying to help.