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follicular cystitis following BCG treatments
My husband has developed follicular cystitis following BCG and BCG+Interferon treatments. He is currently on a low-dose of SMZ TMP SS 400 (Bactrim). It has helped the extreme frequency some. Does anyone have the same problem and want to share experiences or have any suggestions of what worked for them?
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1 Reply
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Louisa,
I wish you well in finding what works for your husband. As always, talk to your care team about your options – helping you get through treatment comfortably is what they do.
Below are things that have helped me with cystitis symptoms of frequency, unproductive urge and tiny volume include, in no particular order. The common thread is relaxing the bladder spasm and pain.
– AZO or pyridium – over the counter urinary tract pain tablets (Check with Doctor)
– Warm towel or hot pack (or hot shower) placed on the bladder
– Walking when the urge hits, as if walking :massages” the bladder
– Massage over the bladder
– Body position when urinating – sitting, standing, flexed forward or standing tall – leaning forward seem to help most.
– In the realm of questionable science, what I drink seems to have a helpful effect. Coffee seems to help, BUT I love coffee, so that could be personal bias. Find if some liquid helps, be it water, juice, tea or other liquid.Perhaps one of the most important tips, for when cystitis hits hard, and I must be somewhere (such as a doctor appointment), is Depends or other adult product. I does not help with comfort, but does make life better for everyone near me.
My after effect of BCG, BCG+Inf and BCG/ Mitomycin has been termed granulomatous cystitis and Cystitis cystica, depending on which pathology lab is reporting. I had to look up follicular cystitis, as I had not come across that term.
A site that offers a intro to the wide variety of cystitis is:
http://emedicine.medscape.com/article/2055346-overview#a1Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
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