Additional drugs stopped. Is this other peoples experience.

[Jake_Bullet]

I’m on V and O. Well actually just V now. Having finished my O cycles. My consultant has stopped my aciclovir and Cotrimoxazole. My V will continue until February. Is this other peoples experience?

[lankisterguy Volunteer]

Hi Jake_Bullet,

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I was on Venetoclax for 6 years and only had one occasion of low Neut# ANC, and no signs of bacterial or fungal infections, so my doctor suggested stopping Bactrim as a prophylactic. He felt that low level antibiotics could contribute to developing a treatment resistant strain of bacteria.

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I was given the option of stopping acyclovir, but since I fear shingles, I requested staying on the anti viral. Apparently there is very little risk or side effects from that class of drugs.

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I assume the NHS has some guideline that your doctor may be following, but you may want to ask about the logic or reasoning for your specific medical situation.

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You may want to consider this study result: bmj.com/content/349/bmj.g6196

SNIP:" Conclusions In older patients receiving angiotensin converting enzyme inhibitors or angiotensin receptor blockers, co-trimoxazole is associated with an increased risk of sudden death. Unrecognized severe hyperkalemia may underlie this finding. When appropriate, alternative antibiotics should be considered in such patients

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Results Of 39 879 sudden deaths, 1027 occurred within seven days of exposure to an antibiotic and were matched to 3733 controls. Relative to amoxicillin, co-trimoxazole was associated with an increased risk of sudden death (adjusted odds ratio 1.38, 95% confidence interval 1.09 to 1.76). The risk was marginally higher at 14 days (adjusted odds ratio 1.54, 1.29 to 1.84). This corresponds to approximately three sudden deaths within 14 days per 1000 co-trimoxazole prescriptions. Ciprofloxacin (a known cause of QT interval prolongation) was also associated with an increased risk of sudden death (adjusted odds ratio 1.29, 1.03 to 1.62), but no such risk was observed with nitrofurantoin or norfloxacin."

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Len

[Newdawn Administrator in reply to lankisterguy]

That’s rather shocking to me Len as I was on co-trimoxazole for 3 yrs as part of my clinical trial whilst taking an ACE inhibitor. Nobody seemed to make a connection. However, looking at the study, I was under the age group studied.

Jake, I stopped Ibrutinib after 15 months (due to arthralgia and myalgia) and continued successfully on Venetoclax with the co-trimoxazole being discontinued 3 months after the V ended.

Newdawn

[Jake_Bullet in reply to lankisterguy]

Thanks for that. I may be under the age group as well

[mickimauser11]

Yes I only remained on Venetoclax as well

[Lilsa]

Hi Jake, I am in the last few weeks of Venetoclax tablets having finished obinutuzumab infusions back in March. Throughout my treatment I have been taking valaciclovir ( anti shingles) daily and Resprim Forte which is a combination of sulfamethoxazole and trimethoprim, two tablets twice a week. My haematologist has asked for a “ T cells subset” test to be included in my blood test on completion of the Venetoclax to determine whether to cease prophylactic antibiotics!

I am thinking of getting the shingrix vaccine but intend to wait for a good 6 months after completing treatment.

Keep walking

Lilsa

[Jake_Bullet in reply to Lilsa]

Thanks. I’ve just had the Shingrix on the advice of my haematologist.

[DeeDeeBird]

My doctor took me off of the antibiotic but kept me on the antiviral. He said to stay on the antiviral as long as I take the venetoclax to prevent CMV

[Jake_Bullet in reply to DeeDeeBird]

Thanks. It doesn’t seem like consistent advice.

[AussieNeil Administrator in reply to Jake_Bullet]

Speaking from experience, you can get extremely ill from cytomegalovirus (CVM) when you have CLL. It's a very common herpes virus (up to 80% of Americans have had it by age 40) and like chickenpox/shingles, it stays resident in your body and can reactivate when your immune system is struggling. I was too fatigued to be active and even quit driving for about a month, because my reaction time became dangerously slow.

In healthy people, it's similar to the flu in how much it can incapacitate you; perhaps you'll feel too unwell to work for a day or two and feel below par for around a week or so. My haematologist correctly warned me it would take me 4 to 6 weeks to get through the worst of it. Probably took me 18 months to get back to near my usual level of fitness.

Neil

[Hiker13]

I completed the 1 year treatment with O V in June. I was told to stay on Acyclovir for a few more months.I had all of the shingles vaccinations before I started treatments in 2021.

[IRN83]

I had V&O 2 years ago. Started V first and after ramp up then O. Long story short, bad experience with V and spent several weeks in the hospital but after 6 months of V was in remission and stopped Now, 2 years later did O fist then started V. After 6 months the chemo has had no effect, last months BMB my bone marrow was 70% cancer. Dr said his plan was to leave me on V for a much longer time (assuming it works at all).

I had been actively treated every two years for the past ten years having been diagnosed 12 years ago. V&O was the only treatment that got me into remission.

I wish you well. (I had FCR, BR, Ibrutnib then V&O).

[Jake_Bullet in reply to IRN83]

Thanks for that. Best wishes