Starting V&O - how strict should I be with contacts/travel/work?

[Our_wes123]

Hey everyone,

I am starting treatment next week and was interested to know how cautious people were with meeting people, using public transport and attending any work events while on treatment.

I'm 40-years-old and have been suffering with regular sickness due to a reduced immune system while on watch and wait, but the thought of going back to Covid levels of isolation fills me with a bit of dread.

I know it can be very appointment heavy to begin with, but was wondering if people were more relaxed after the initial couple of months if, touch wood, I start to feel better.

Any thoughts or previous experiences welcome.

Thanks!

[lankisterguy Volunteer]

Hi Our-wes123,

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I wish we could provide better news, but since you already are experiencing infections, treatment is not likely to improve your immunity. The only way to become more resistant would be to have regular infusions of IVIG. uptodate.com/contents/intra....

You may want to inquire if your doctors have tested your IGG levels and if they are low enough to allow IVIG under your NHS rules.

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The other option is to use tightly fitted FFP2 (FFP2 in EU= N95 in USA) respirator masks

See healthunlocked.com/cllsuppo...

and limit your time around other people that are not wearing masks. See attached graphic.

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Len

Exposure time vs different mask types

[Our_wes123 in reply to lankisterguy]

Hey Len,

Thanks for your detailed reply. So I should have said actually, I have been having antibody infusions for the past few months and unfortunately they haven't really been having much of an impact.

Time to take extra precautions and invest in some respirator masks I guess!

Cheers,

[LeoPa in reply to Our_wes123]

Definitely respirator masks when in crowds.

[jijic in reply to lankisterguy]

Just wanted to say anecdotally that this wasn't my experience at all. I also struggled with frequent infections during W&W but since treatment (V+O) have been sick less frequently than some of my healthier friends, while taking basic COVID precautions (KN95 masks in crowds and supermarkets, though not always tbh, and frequent handwashing, plus excellent ventilation).

I've had COVID once, and two colds in the 3 years since starting treatment. Your mileage may vary of course.

[jijic in reply to jijic]

I should add that I also exercise regularly, eat very healthfully, and take all of the vitamins recommended by my GP. My immunoglobulin is still a bit low, but my health is otherwise excellent.

[Our_wes123 in reply to jijic]

I guess everyone is different but that is great to hear and gives me some positivity. Thanks for your message. Much appreciated!

[jijic in reply to Our_wes123]

I'm glad! I would definitely choose more precaution now (I was treated in the early days of COVID) but you can live a pretty full life with a mask on!

[spi3]

spi323 hours ago

Please be assured that we are truly blessed with the new immunotherapy treatments! My hubby started in a study 2 March 22 with O+V+A and his blood in 2 February 23 was negative UMRD and we are hoping that on 20 April his bone biopsy will also be negative UMRD! This would mean he is in remission! His Dr hopes there will be a cure in his lifetime! He had no side effects except in the beginning with venetoclax a slight headache that went away with a cup of coffee

[Our_wes123 in reply to spi3]

that’s great, so glad to hear and hopefully I get the same outcome.

[spi3 in reply to Our_wes123]

I'm praying for you too

[Floxxy]

I'm starting Venetoclax next week and Rituximab in 6 weeks as a second line treatment. I had FCR as a first line treatment 4 years ago and I had Neutropenia for a couple of years. I feel well in myself at the moment but I will be very careful, meeting people outdoors or in large airy indoor spaces. I want this to work so will not be taking any risks. Good luck. X

[bennevisplace]

There's no way to dress it up.

V+O can be a really effective treatment in getting you into remission. One cost is that Obinutuzumab kills not only CLL cells but healthy B lymphocytes too, and after therapy finishes it takes many months for O to clear from your system. As a result, you could be highly vulnerable to viral (and potentially other) infections for the next year or more.

Act accordingly is my advice 😐

[Our_wes123 in reply to bennevisplace]

ok, thanks a mil for taking the time to reply.

Looks like I’ll have to make some changes but hopefully all worth it

[HappyDave]

Hello

I have just finished a year of O&V successfully I think. Could I suggest caution but not to the degree of Covid 19 isolation. I wore and still wear a face mask in crowded public places like supermarkets and busy public places. I visited pubs and restaurants but at quieter times. I eat no shell fish, live or unpastorised cheeses, my eggs were well done and I avoided undercooked food and anyone who was unwell. Yes I had the odd infection but it was ok. I am now on daily antibiotics as my immune system is now defective. This has worked really well and I have had no further chest infection although it's not a magic bullet. I was really dubious about taking the antibiotics but I was wrong and I need to apologise to the consultant.

Best of luck, be sensible but do not let this impact too much on your life. There is life on O&V and beyond.

Best wishes

Dave.

[Big_Dee]

Hello Our_wes123

We are indeed all different presentations of CLL. I did B&R for my first treatment and now doing V&O treatment. I have only had two cold like illnesses and no covid in 5 years since diagnosed with CLL. definitely no hospital stays. I did have Neulasta shots with B&R treatment with boosted my imune system. Blessings.