My partner who has CLL and on venetoclax ramp up(currently on 200mg) tested positive for covid six days ago, he received the monoclonal antibody infusion on day 4. He had received a letter from our health board advising on what to do if he tested positive for covid, so one simple phone call and everything was arranged for him including transport, all went well. Just wanted to say thank god for our wonderful NHS. He is still testing positive on lateral flow tests at the moment but coping well. I have now also tested positive.
Monoclonal antibody infusion: My partner who has... - CLL Support
Monoclonal antibody infusion
Pleased he is coping well and l hope you do too l have not heard a word about treatment or had any information if unfortunately l get Covid 😕 so just keeping everything crossed
Neither have I.. And I am very worried as gp does not seem to p have a clue
Hi there again, I have contacted 119 yet again today explained the situation, ie no letter or priority test kit, also explained my record says high risk of complications if catch Covid19. I insisted on them referring my case up the chain of command! They have referred it to the case management department. If this works I will let you know asap.Say consultant today the hospital were unaware that there was a problem for some of us. Obviously many patients don't know that they should be receiving these priority kits.
It really is a pot mess...I know several people that are less immunocomprised than me that have had letter and pack ..I dont mind they have them but where is mine ?? I do blame my gp all that I have had from him was a letter which he got a template for recently from nhse to send to newly diagnosed patients(I was diagnosed more than 14 years ago ...nothing at all about the coding which he hasn't put on my medical records ...grrr I have just written to gp again but phlebotomist told me thismorning that it will take at least a week for him to even read it grrrrrr
Here, Here, what would we do without our NHS. Glad to hear of your partners easy access to infusions and recovery. Hope you have an easy ride abd recover soon too.Ann
Best wishes for both of you as you deal with COVID.
Covid finally got to me. Unfortunately, our area near Kansas City has a critical shortage of antibody treatment, so none for me. Luckily, I seem to be doing better with only minor symptoms. Supposed to hear this week if a resupply is made.
Interesting that you are on Watch and Wait with no CLL treatment and still you have enough antibody strength to fight off Covid. Good for you! Those of us who have undergone CLL treatments that destroyed our immune system are in a different boat, unfortunately.
Yes. Luckily I am vaccinated and boosted. My specialist said I probably had decent antibodies. Even with CLL, I’ve been sick with a fever only once or twice in the past 6-7 years. I do battle viruses and sinus infections, but really pretty minor.
Thank you! Mainly just dealing with boredom right now. Good thing I am vaccinated and boosted…might have had a bad experience!
I hope you are on the mend soon. My whole family has tested positive but I am currently negative. Unfortunately, I haven’t received anything from the NHS despite being on treatment so will have to hunt down any anti virals if I test positive.
Get well soon, both of you!
You are, indeed fortunate that you live in the UK. I have CLL and require IVIG treatments every 4 weeks but but when I came down with Covid (from my daughter a nursing student) the response from my doctor was there was no treatment available for me. I was told to take over the counter remedies. I am still sick with it 20 days later but very slowly getting better.