TO ISOLATE OR NOT?

[jaypax]

Hello Everyone.

I'm just wondering what my fellow CLLers would do in my situation. I was due to start Venetoclax therapy tomorrow (Monday) but my consultant phoned on Friday to advise me that in view of the ever increasing cases of coronovirus in the UK, my treatment has been postponed indefinitely for fear of me becoming infected in the hospital environment with a further compromised immunity. The question is, at age 79 at the stage of needing treatment, should I voluntarily self-isolate?

The UK Health Secretary has indicated that isolation for over 70's is under consideration by the government anyway so maybe this question will be rendered redundant.

Best wishes to all in these worrying times. Jeff P

[Newdawn Administrator]

Frankly Jeff I’d say yes but with some provisos. Make sure you get some exercise and fresh air away from crowds and avoid isolation that impacts on your well being.

You’re clearly very much at the treatment stage so precautions are necessary.

I’m presently on treatment and intend to increase time at home even though I’m a long way from being in the over 70 age group.

There’s so little that seems to be known just now as to how ongoing treatment impacts the progress of the virus. I’ve read that Covid19 creates its own micro-environment in the body in which to thrive. I’ve got to hope it gives up when it tries to mess with cells already disrupted by the actions of ibrutinib & Venetoclax! 😉

Keep safe,

Newdawn

[jaypax in reply to Newdawn]

Thanks Newdawn. Wise words as always! You have confirmed my thoughts completely. In myself I am feeling well and aware of the need to excercise, a keen gardener, cyclist and golfer. I will definitely forego the golf in groups.... just too risky.

Good wishes to you for your treatment. Jeff

[caven in reply to jaypax]

I encourage you to search for garden* posts at this site to see reminders of the threats to your health from contact with soil products.

The garden can be, for the immune compromised person, a worrisome place <if> the soil is disturbed. This does NOT mean keep clear of the garden ~~ continue to use it as a place for recreation, sitting-out, flower contemplation, etc. However, once you disturb the micro-environment of the soil then you can introduce into your lungs ample pathogens to cause respiratory distress. This is not simply a warning about breathing in dust; rather, it's a reminder that the fungi in soil (a necessary component for a healthy growing medium) is far-from-healthy for your lungs! Potting sheds, because they have limited air-flow, are a particularly 'dirty' environment.

So, treat the garden as a place-to-BE rather than a place to WORK.

Caven

[jaypax in reply to caven]

Thanks Caven. Yes, I am very aware of the potential threats and although I love my shed, I keep out of it as much as possible! Most of the work I do in the garden is outside with gloves & mask when needed. And of course, no touching the face! Best wishes and thanks for your input. Jeff

[Panz]

Jeff,

I have been in what I call under house arrest for three weeks because my ANC dropped to under 1. I go to the market when it first opens up and I walk the beach before sunrise for a 3 mile walk. Then go home eat breakfast outside when I gets too warm I go I for the remainder of the day.

You get used to it....I am 78 and had CLL for 31+ years.....with 17 years of on and off treatments. I now receive IVIG every 4 weeks. I am due for the IVIG in 2 weeks and I sure hope the don’t cancel it on me. I don’t think they will as I am at the top of their list for those who need it the most as I have almost no Ig’s of my own.

So this whole situation is a concern for all of us at some level. I am happy I am able to self isolate .

All the best to you,

Panz 🙏☘️💕😍💗🌞

[jaypax in reply to Panz]

Hi Panz.

Thank you for your interesting reply. I've just got back from my beach walk! A bit windy but lovely fresh air and no rain today! Makes a change for us here in Wales. Going to speak to my doc tomorrow but I am going to put myself "under house arrest" !!!

Worrying times for us all. Best wishes and stay well. Jeff

[Psmithuk in reply to jaypax]

Thank you for making me think - my husband and I are now going to the coast for a beach walk as well. What a good idea (also in Wales and probably short of Vit D).

[jaypax in reply to Psmithuk]

Hi Chris. Enjoy your beach walk! It's a beautiful day in Wales!!! And I'm sure we're all in need of a VitD boost!!! Best wishes. Jeff

[Psmithuk in reply to jaypax]

We went, with the dog, a flask of tea and some choccy biscuits. Thoroughly enjoyed!

[jaypax in reply to Psmithuk]

Great! Good for you.

[Root65]

Yes, definately, there must be many of us self isolating now for our own protection. We have a garden, it is going to be such a luxury to have access to it as the weather warms, I have never been so grateful for it. Take care 🙂

[jaypax in reply to Root65]

Hi. Thanks for your input. I totally agree that it is a luxury to have a garden to enjoy. And yes, it's come to the stage where we have to self isolate. Good wishes to you. Hoping we get some warm weather to enjoy our gardens. Beautiful day today!

[Hidden]

I'm 71 and live in Spain. I had started socially distancing myself for two weeks before we went into lockdown at midnight on the 14th. So far so good. We have a large terrace so at least I can sit in the shade outside, being sure to use a 100 factor sun cream and sport a hat! As I also have quite severe joint issues exercise is only possible in a limited way. Only you can make a decision on what is right for you but it seems sensible to stay as far away as possible from any source of infection, Covid 19 or otherwise.

[jaypax]

Hi Madlily. Thanks for your reply, it must be very worrying for you there in Spain. I am now socially distancing myself...... thank goodness for the telephone, emails and Skype! We are going to have to get used to this for quite some time. Stay safe over there and best wishes. Jeff

[Sepsur]

I am meant to start on Venetoclax tomorrow. I am also meant to be having an IVIG on Friday at another hospital ( which experienced its first fatality from corona last Friday). I am trying to move this infusion to coincide with being in the Christie for 2 days.

I am now starting to isolate & have taken my youngest daughter out of school. Everyone who enters the house, now have to wash their hands.

I do take the dogs for a walk everyday.

We are just drawing up a list of useful skills to learn or do.

How about thinking of decent Christmas cracker jokes?

Wishing everyone well.

[jaypax in reply to Sepsur]

Hi Sepsur. You must be at a similar stage to me although no IVIG is currently planned. I like the positive thinking.....learn new skills. I have recently taken up painting so now have plenty of time to improve! Best wishes for your treatment and stay safe. Jeff

[Nanno77]

Hi Jay,

I am your age and taking Ibrutinib daily. I self quarentine out of an abundance of caution. My opinion is that I'm probably more vulnerable while on treatment, so I would agree with your Dr to postpone the Venetoclax until this pandemic passes.

[jaypax in reply to Nanno77]

Hi Nanno. Best wishes to you at this time. Yes, I have every faith in my doctor and postponement of treatment is, I think, the right decision. All the best. J