Amoxicillin and CLL

[KLWC]

My husband had a tooth extracted and was prescribed amoxicillin to prevent infection. After 2 days, no infection but he has chills, icy aches and headaches. But no fever. As a precaution he took a COVID test which is negative. He has no energy and is sleeping most of the day. Has anyone else experienced this? His treatment regimen is pirtobrutinib whic he has been taking for 13 months.

[Justasheet1]

KL,

I can’t give you any experiences but would advise you to contact his Hematologist immediately.

Sepsis happens quickly and must be avoided at all costs

Jeff

[KLWC in reply to Justasheet1]

Thanks Jeff. We sent a message to his oncologist and are waiting for a reply.

[kitchengardener2 in reply to KLWC]

Please don't wait call your emergency services. Hopefully it's not sepis but vital to check. Hope he feels better soon x

[CoachVera55]

I just upped my Zanubrutinib from 80mg daily to 80mg twice daily (1/4 -> 1/2 dose) & was out doing Community Service in the changing chilly NY weather for too long & no long janes under my sweat suit. I came home with coughing, running nose, chills & more body aches than usual on Saturday. Sunday was more of the same, no fever but by Monday morning I had pain from my mid back that wrapped around my left chest wall. I called my Primary, ENT, 2 Oncologist & the Onc Pharmacist.

I was able to see the Onc PA & they agreed that it may be a recurrent Pleurisy & they ordered antibiotics & steroids for 7 days & I have my original appointment with the Onc 1 week later. CLL Specialist recommended going to the ER but I declined. Is your husband on IVIG, just curious because that is what they are recommending for me? I’d definitely notify one of my doctors & have him seen. My bloodwork had even improved in that 1 week increase of the Zanubritinib. #GODSPEED🙏🏾

[KLWC in reply to CoachVera55]

Yes, he has IVIG once per month. Thanks for your reply.

[MovingForward4423]

Could be a side affect to Pirtobrutinib. I used to get times like that with Ibrutinib. Worth speaking to your GP. I’ve had bacterial infections without a temperature.

[Sepsur]

My experience of Amoxicillin is that it’s totally ineffectual- always prescribed clarithromycin

[Vakraas]

On watch & wait rather than under treatment, but my immunologist - who liaises closely with my haematologist - has no issue giving me pre-emptive amoxicillin prescriptions that I can then take on an as-needed basis. However, both immunologist and haematologist (backed by GP) are very clear that amoxicillin is not a panacea, and should be used judiciously and in my case primarily for chest infections (though I understand it's common in the UK to use it for post-surgery dental infections as well). I personally have no side effects, and on those rare occasions I've used amoxicillin it's been effective; but of course we're all different, and one individual's personal experience is no substitute for professional medical advice.

Your husband's situation sounds potentially much more serious, but you've already noted that you've contacted the oncologist. I hope this resolves itself quickly.

[CoachVera55 in reply to Vakraas]

Maybe that is where the doctors’ approach differs the most with W&W versus treatment, because that is how my doctors would react before treatment. But now, somehow on treatment they are so reluctant to prescribe me antibiotics but instead watch the infection progress & now wants to push IVIG🤔 I guess IVIG is just additional ammunition because clearly antibiotics is still necessary. I am just curious Vakraas & anyone else that wants to chime in, did your doctors discuss IVIG with you as part of your futher treatment plans?

[Vakraas in reply to CoachVera55]

No, I've never had IVIG suggested as part of an infection treatment plan CoachVera55; doctors - both specialists and GP - have been happy to continue with antibiotics. Just for quick reference in case it's relevant, I was diagnosed with CLL in January 2006 (when only in my 30s), and have been lucky enough to stay stable and remain on W&W since. I know my immunoglobulin levels, and they're a bit worrying - arguably the most significant current impact of my CLL - without needing any further intervention.

[CoachVera55 in reply to Vakraas]

Yes I was diagnosed in 2009 at 43yrs old & honestly just accepted that I had to be more careful but never looked into the diagnosis any further. So I don’t remember if my Immunoglobulins were even trending down & yes doctors were okay with ordering antibiotics in W&W. It wasn’t until treatment started that none of my doctors would order antibiotics even though the Zanubritinib medication insert states to treat infections promptly, properly & even prophylactically. Its still very bizarre to me & I am honestly still traumatized by it all. I have had asthma since 1.5yrs old & there has been an antibiotic & steroid protocol for me forever 🤷🏽‍♀️ But that was with my old faithful reliable doctors, these new ones not so much. I’m just not the reinvent the wheel type especially if its working. I do understand the need & recognize that IVIG may be warranted in the future, but that’s only if it’s warranted.

In W&W my first Onc told me that numbers wax & wane, its the continual trend downward that has to be addressed. May you stay in W&W forever & thanks for your response 🙏🏾

[Fastbike14]

I recently had an operation under general anesthetic with follow up co trimoxazol to prevent infection. 5 days later developed the symptoms you described. I was admitted to hospital for 5 days , treated for pneumonia. Act now do not wait. Good luck with your recovery

[CoachVera55 in reply to Fastbike14]

Hello Fastbike14, cute name & great advise. I am just trying to hear other treatment plans to get an idea of the rhyme or reason. Are you already on IVIG & have a central line for your infusions? How did they treat you for pneumonia with oral medication or IV? #SpeedyRecovery🏍️

[Fastbike14 in reply to CoachVera55]

Hi Coac Vera55, admitted to hospital via GP letter and was seen within 1.5 hrs and admitted. Took a day to get a bed on the ward but was well treated with iv antibiotics as well as oral. MRI Scan of lungs to rule out blood clot. I recovered really quite well considering I'm TP 53 Mutated. Currently on treatment with Venetoclax. I had Rituximab infusions to start which went well and now just Venetoclax which I also get on with. Numbers all looking good. I was diagnosed 2006 and first treated 2011 with FCR, old school treatment which was brutal. Since then treatment has been Ibrutinib and my current treatment. To be honest I'm happier on treatment and feel like I'm fighting back. I don't want to be defined by CLL diagnosis and continue to enjoy riding my fast bikes.Wishing you all the best.

[CoachVera55 in reply to Fastbike14]

Awww that’s very swift & good treatment Fastbike14, but what of IVIG infusions & a cental line/mediport?

[Fastbike14 in reply to CoachVera55]

No central line or mediport. Don't know what iveg infusions are

[Fastbike14 in reply to CoachVera55]

Just looked up ivig and I have never been given this treatment

[KLWC in reply to CoachVera55]

My husband does not have a central line or port. IVIG infusions once a month, about 4 hours duration,