I am 51 and just started on Venetoclax after a resistance to Ibrutinib.
I have already had a couple of near misses this year with 10 weeks in Hospital from the 6th Jan with a serious chest infection and pneumonia which coincided with low platelets (4), then a blood clot on the lung developed. I spent this time isolated as was neutropenic.
Got out of Hospital for the pandemic to breakout so more isolation.
I am normally a straight thinking bloke but by the time I finish shielding I will have lost half a year.
I am feeling well all things considered but have started to wonder if the cure is more dangerous than the disease with Covid 19.
The infection I had was never fully diagnosed so I am pinning my hopes on it was Covid and hopefully will have immunity but I certainly can’t see myself isolating past the 12 weeks. I will have a real moral battle on my hands if I am told to continue shielding.
I know that if I refuse to shield this will be seen as me being selfish in regards to the possible strain on our wonderful NHS and of course to my family who could face the trauma of losing a loved one, but to hear talk of isolating till next year fills me with dread and know I would probably not survive mentally.
I am not sure if this post is a question or therapy but needed to put this out there to try and get an anchor in this storm.
Thanks for listening
Stay well
Dell
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Dell49
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Just walked and walked. Didn't see a soul. Before that, I sent a message to a friend to say I'd be arriving for a few days. Anyway, I calmed down after the walk. It wasn't anything yesterday that set me off, it was the idea of shielding lasting for a long time. That's what triggered me. I've told myself to forget that until it happens. Not sure it will work.
You've had the most traumatic year I've seen anyone endure. You've been brave beyond belief and I'm not surprised you feel like this.
I wonder if the Venetoclax had the same protective effect as Ibrutinib is turning out to have. Here's hoping you had it and can get the antibody test soon. I am in the same boat. Was ramping up the Venetoclax, got very sick in Feb. I am hoping it was covid and the reason I didn't die was due to the Ven. Hang in there!
I’m not suggesting that at all but wouldn’t it be great if it did. I was on Ibrutinib for 18 months but fell into a small percentage of those where it can actually treat the symptoms but also antagonise the CLL. Thats why I have been moved onto Venetoclax.
Hi not surprised you feel this way I think we all do somewhat, living with the kind of uncertainty and confusion, we are living with right now.
It’s good to let of steam and this is the best place to do it as we are all in the same boat, so we understand.
I try not to think about how long it will be this way m, but that’s difficult given every programme on TV talks about it.
It feels a bit like Brexit TV right now we are getting the views and experiences of the world on there.
It’s as if all other news no longer exists, but it must.
It may be a bit of magical thinking on my part but I try to convince myself that some miracle cure or test will free us all up and life will return sooner rather than later.
Magical thinking or not I am hanging onto that hope for as long as I can.
Get antibody tested next time you see your doctor, if you can, to see if you might be immune. They need to figure out the “threshold” of antibodies that are protective. But to know you have antibodies might be helpful until they figure out the threshold. When you go for a walk with a mask on; stay away from others just wave and keep moving.
On a personal note, you will survive. Get creative at home doing things you wouldn’t normally do ....do crossword puzzles, learn a foreign language, exercise on a mat or do yoga and watch videos of educational things you always wanted to learn how to do (ie cooking and building furniture etc). Drawing and reading is also time consuming, but fun. There are so many great books out there you finally can read. Keep a Covid diary and write down your thoughts and experiences. Or video tape your daily diary on your phone. Be patient; a vaccine is coming.
The antibodies tests are used for those that tested positive for the virus and recovered so that they can find out if the person has plasma that might be donated to help others. I want that test too even though I wasn't diagnosed (had an odd February 'flu' even though I had the flu vaccine in November), it would be great to know if I might have protection in antibodies.
For you to post o. Here I know you must be feeling it badly. I'm ticking the weeks off.. I couldn't bear not seeing family..
I'm hankering to get back to work too....
However, let's just wait it out to see what they come up with... We have gone through too much to take silly risks... You have been through the mill... Just sit tight...
Thanks for your reply, I can only guess how you feel now you have a granddaughter.
I miss the social interaction as well, which is a surprise as I never saw myself as very sociable.
Since my post and the fantastic support this group gives I have given myself a bit of a kick up the backside and I now getting on Maria’s nerves again.
I think that getting your feelings out there and off your chest help and then you can have a good talk to yourself and I call it' get a grip'. Here whenever you need to off load
BTW I had, a good cry last night when we got a little video of Rose.... Felt frustrated with the whole situation.. But we have to do this... Keep safe 🌈
That is very interesting about the fungal infection, as I said it was a bit of a mystery as to my infection so I was also treated with an anti fungal (Ambresome) and I am still on anti fungal meds, this all took place in January when Covid didn’t even have a name. Good luck with the treatment going forward and thanks for reaching out.
It's a struggle I know. Go and have a chat with your GP or over the phone conversation. Ask for temporary help. It will not go in vain. It's hard to start and say I can't cope if normally a strong person but needs must as I know.
This feeling will only get worse, so please before it goes on too long.
So pleased that overall health wise you are feeling better and out of hospital.
I was feeling the same way, too, yesterday, and I did not spend 10 weeks in a hospital. I'm allowing myself two little things that are helping quite a bit. First, I'm not going into any stores, but one of the coffee shops here is open and I'm walking there about 3 days per week and buying coffee and a pastry. Not great for my diet, but it gives me something to look forward to, I would like their business to survive. Second, I run a few times a week without a mask. I found a place where I can do this without any chance of being within 6 feet of each other. I feel better after I run, and I live in an apartment and I've tried videos, but it's not the same. Is there anything you can do to get outside and walk and anything you can do regularly and look forward to?
Ellen we also live in a condo in Toronto but my husband who has CLL is concerned about getting in the elevator and we are on the 13th floor. Do you also need to use an elevator to get out ?
No, I live in a walk up. Although the decision is personal, I don't think I'd let the elevator stop me. I'd wear my mask, face the wall if anyone got in, and try to avoid times that would be likely crowd an elevator. I also carry hand sanitizer when I will need to touch anything.
I had a phone chat with Dr. Brian Koffman the other day, Venclexta does not have the same protection against the cytokine storm that happens with COVID-19 as Ibrutinib does, unfortunately. If anything it could put us at a greater risk. I was disappointed to hear that due to being on the big V as well. Be well and safe, don't lose that sense of humor!
I am not much help when it comes to feeling the isolation. I am pretty much used to being by myself. But I do think you are a perfect candidate for antibody testing, which, at least in the USA, is becoming commonly available. One little pin prick and they can say whether or not you have been exposed. They are not yet certain how much immunity it gives and for how long, but most experts think it confers at least significant immunity for a while if you show you have had it and recovered.
Do get out for a daily walk. I worry that we are obsessing too much about the risk of catching this. Almost all transmission is person to person in close contact. Stay 6 feet away. Put a mask on when you can't. Wash your hands when you get home. Watch mindless TV and stay away from the news.
Hi Dell - I'm truly sorry that you've had a long spell in hospital. I know from experience that it is rough, boring, difficult to sleep and worrying; sadly very many of us on this forum will have similar stories.....
But you said it - "I know that if I refuse to shield this will be seen as me being selfish in regards to the possible strain on our wonderful NHS and of course to my family who could face the trauma of losing a loved one" I'm assuming it was an understandable cry for support for you to do the right thing. You're right, it would be selfish to ignore what you have been tod to do, you might be a threat to others, it would be a terrible way to repay those who nursed you, and on top of all that, I'm sure that there would be many who would miss you.
Enough said! Cheers and know that we all have to stick with it. Handley
Thanks for your reply and yes I think it was more of a therapeutic post than a serious question. Sometimes I think we all need to hear a perspective from people who do understand what we are all going through.
It has definitely helped to get these thoughts out of my head.
Since my post I have began to feel a lot better mentally and you are correct I would never want to put anybody at risk.
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