uti, cough, fever and other virus related symptoms

[springie]

I was diagnosed Stage 4 SLL in December 2014 and started FCR the following March in 2015. The gap was due to my oncologist suddenly dying. This combo put me in remission for a year and a half. Came back full force (CT scan) in early 2017 and started Imbruvica then nodes went away again.

My question: I've had symptoms of a cold or virus for close to 3 months solid. I've had many UTI's, fevers on occasion, but I'm freezing all of the time and coughing as I've never experienced. I've even thrown up from coughing and the bouts can last up to a half an hour. My primary doctor ordered an X-Ray which came back negative. Am really surprised that my lungs were clear (though I keep coughing up sputum that's thick and yellow brown). Doctor seems to think it's no big deal, but my symptoms are driving me a little crazy.

Sorry for the longish post. Anybody experienced this?

Thanks, springie

[Cpt_N]

I've had a pretty bad cough the last few weeks after going on antibiotics for pneumonia. After a CT scan it showed that I had fluid in my lungs but I didn't have a cough or any symptoms. I contacted my doctor saying that I'm coughing up some nasty mucus and she said just take some Mucinex and you'll be fine. After a week or pretty bad cough and feeling crappy, I'm finally starting to feel better. I don't think it is a lung issue, I think it's post nasal drip that's just in my throat coughing up. Are you having nasal problems? It could be sinus related which is causing the cough

[springie in reply to Cpt_N]

Thanks Nick-M,

I have been having sinus problems for several years, so you might be right! Doc did prescribe 2 allergy medicines, but cough remains. Since my cough and other symptoms haven't gone away, I'm confused. I live in the high desert in CA and the rabbit brush is growing and flowering from our last wet winter. Maybe I do have an allergy to local wild plants that the medicines don't help.

springie

[cllady01 Former Volunteer in reply to springie]

Springie, you have CLL and are in treatment--both of those factors mean you need to be vigilant to pursue the reason for any possible infection. Have you, are you able to see an Ear , Nose, Throat specialist to get relief as well as catch any infection before it might get more invasive in the respiratory system.

I hope you find the source and get relief soon. Stay well!

[springie in reply to cllady01]

Thanks cllady,

I'll probably need a referral to a specialist, but I can do that. I wondered why my doc seemed uninterested, but she's busy and we don't know each other well since she just started work here. I'll keep at it.

~s

[Jillinill]

Springie, I can relate to many of your troubles and have been taking Imbruvica for the past 10 months. I was at the primary care doctor today talking to him about the results of my recent UTI which felt like a bear clawing me yet came back with a lower level of mixed bacteria. Bactrim seems to have taken care of the infection. I hadn't had a UTI since in my 20's, but we are generally more immunosuppressed.

My doc and I also discussed my persistent chronic cough which has been getting worse the past few weeks. 3 of my doctors looked at my CT scan which has a few cysts in one lung, but no PCP or other infection found. I was completely surprised. Then they listened to my lungs, with nothing abnormal found.

They each said that it's likely related to post-nasal drip and the very thick mucus that I've had all of my life. The drip could be caused by irritation from stomach acid that works its way up the esophagus and you may not even realize you have acid reflux. Like you, coughing and gagging can drag on for 10-30 minutes. Sometimes I'll pull a rib muscle or occasionally reflux some food from the sheer force of a cough. I've found that peppermint from toothpaste really sets it off. My sputum has clear plugs of stuff but no color. Since yours is colored, you might want to inquire whether you need a sputum culture to look for a bacterial infection even if you are already taking antibiotics.

I would push urgently for a solution with your doctor to protect from worsening infection which can lead to sepsis, especially if you have low neutrophils.

For drying up the post-nasal drip, my doctor today said to use fluticasone (Flonase, OTC) nasal spray, but I've also read that decongestants may help. I've been occasionally using fluticasone spray for several months but I made need to be more compliant daily before I discount effectiveness.

For acid reflux, he told me to continue taking famotidine (Pepcid AC) twice daily as prescribed since I started taking ibrutinib.

I also find myself with thermoregulation problems with some light day or night sweats and sometimes I'm chilled to the bone, though only have slight temp fluctuations and no fever. I still tend to throw blame at cytokines from CLL cells which likely fluctuate throughout treatment. Just focus on layers of clothing and bedding to stay as comfortable as possible. For sweats and fatigue, the doctors seem to have no concrete answers.

Everyone reacts differently, but I hope you find answers and are feeling better soon.