Working while on treatment O&V

[Fergusaims]

Hello to everyone. I have been following this site since being diagnosed with CLL in Nov20 & am very grateful for the reassurance & knowledge that site imparts.

I am on Watch & Wait, in the UK, but following a dip in my platelets to 84, doctor asked for bone marrow biopsy, which has come back with 85% infiltration, so he is recommending that treatment is started. Venetoclax and Obinutuzumab for a year has been put forward & having read about the efficacy of this combo now for the last few months, I am happy with this. I am self employed, an accountant for my sins, and can schedule my work fairly much as I want it, say taking time off for treatment and making it up later.

I'd be interested to hear of folk's experience of being able/not to work while being treated with O&V.

Thank you

[MGirl-Aust]

Hi Fergus,

The first 8 weeks of V+O are the most intense, with lots of hospital visits for infusions, blood tests and appointments. I took 6 weeks off work and it was great to have that time off - not so much because I felt unwell (although I was tired at times) but rather it was good not to have the pressure of work deadlines, and trying to fit hospital visits in around a work schedule. I wish I'd taken 8 weeks off ;-).

I'm in week 8 of V+O now and back at work, part-time (3 days a week) and it's been fine. Fortunately I'm still working at home due to Covid; I'd be reluctant to use public transport and go to my workplace which is in an open-plan office as I'm nervous about infection risk.

Best wishes for your treatment 😀

[DRM18]

Hi Fergus,

I worked full time during O + V, never missed a day, but I always have Fridays off, which made it easy for me to schedule infusions & labs.

—Dave!

[Fergusaims in reply to DRM18]

Hi Dave,

Thanks for this. It is very reassuring, which is always good to have as "the journey" is always unsure & good to hear from those that are ahead of me.

[DRM18 in reply to Fergusaims]

Hi Fergus,

I loved treatment; I was mighty sad when it ended, missed the comforting routine of it.

Hope yours goes as smoothly!

[Fergusaims in reply to DRM18]

Thank you, just got to get the Type2 Diabetes slightly better under control & we're good to go.

[Mldeterm]

My husband only missed work for infusion days and worked remotely from the chair for those but avoided calls/meetings, they were able to even schedule his labs apts around his schedule (early in morning and late in day). He had a very easy time with treatment and worked fully remote once COVID started, but never lost any energy. Hope you experience the same.

[Fergusaims in reply to Mldeterm]

Thank you Mldeterm (& others). I like what I'm hearing today. My work is made easier in that it is garden office based, few calls and meetings. I fully intend to follow Dave above, who I believe dozed in the chair and did some reading around his supply of food and coffee. I hope it is like that & respect to those for whom it was difficult. I didn't realise I could be so positive, but since being diagnosed with Type2 diabetes and CLL on the same day, have quit most alcohol, got my glucose nearly to acceptable levels via diet and exercise & lost 2 stone (some probably due to the CLL). Looking forward to retiring in 2 years time is also a great motivation.

[Mldeterm in reply to Fergusaims]

I'm sure that feels very overwhelming, but anything you do to improve your health for the diabetes will spill over to an advantage on your CLL. My husband has T1 diabetes and CLL and he was able to have the steroid pre med removed from his obinituzimab infusions (steroids spike his blood sugar dramatically for up to 3 days). There is a lot of flexibility on the pre-meds so do speak up as you need. Good luck to you!

[Fergusaims in reply to Mldeterm]

Thank you, great advice

[DRM18 in reply to Fergusaims]

Hi again Fergus,

If I’m the Dave in question, then yes, may you follow my lead regarding treatment.

I’m respectful & sympathetic to those who had a hard time with the protocol, but I’m also grateful to say I did not. My infusion days were little getaways I looked forward to, as they left me no choice but to sit & think & meditate & doze (in that order), & read & doze, & listen to music & doze, & text my wife comically due to the buzzy effect of IV Benadryl, & doze.

Hmm. I used to think it was the steroid infusions that kept me awake the night after Obinutuzumab, but now I’m not so sure 🙃 ...

[Fergusaims in reply to DRM18]

Dave,

I think I'll just cut out the middleman & doze. I need the sleep & can afford the time off.

[Livingwith67]

wondering how you all are two years on? Interested to know as currently in o&v treatment cycle 4

[Fergusaims in reply to Livingwith67]

Hi, Thanks for the post. I started Obinut in June 21. Apart from the first day, all went very well, with no side effects. The transition to Ventoclax was also very easy. I am very lucky to have had a smooth ride. As indicated on this site, it can take up to a year post treatment to get all bloods in the normal range. As if on cue this was the case with me, the Lymphocytes being the last one to behave, with the May23 blood results. I am feeling absolutely fine & I wish everybody else on this forum the same progress..