Hi everyone, yesterday had my parents over for lunch for the first time in years. My mum has Acute Myeloid Leukaemia and had a stem cell transplant last august. This morning I have tested positive for covid. Really panicking and dreading letting them know. Has anyone got any experience of this?
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Hi @Marye
I’m so sorry about your situation - you must feel really anxious.
I have no direct experience of getting covid, but I did have Acute Myeloid Leukaemia and then a stem cell transplant, just over one year ago. Things have changed a lot in the last year. The good news is omicron is not as dangerous as previous variants; there are antivirals and antibodies now to protect from severe illness, and your mum may well qualify for these brilliant new treatments (like I do) because of her recent Stem cell transplant.
It’s important you tell your mum asap about your covid, so that she can test herself. The new treatments need to be administered within 5 days of getting covid (to work at their best) so the sooner she knows she has it, the sooner she can get the meds. She will need to tell her transplant team, if she is positive, and to do her priority PCR test, if she received it, after a lateral flow test.
But she may not have caught it! I know a couple of people who were in very close contact with vulnerable relatives, and then discovered they were covid positive. The relatives did not develop it. So not every contact results in the infection being passed on - you may both be lucky. Although it’s a smaller chance.
I’m sure your mum won’t be angry with you, Marye. If she’s anything like this weary shielder, she will think it inevitable she gets covid at some point, now restrictions have been lifted. I have a 15-year-old son, and just last week his best friend tested positive. I have been braced for positive tests for me and my son. But if we get it, it’s no-one’s fault. Life has to be lived. My son absolutely must have a life. As must you. You have clearly been testing. You clearly love your mum. Your mum might initially be anxious, but I’m sure her transplant team would quickly reassure her of how good these new treatments are. Just let her know, and you can both go from there.
Best of luck, and let us know how things are.
All the best. X
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Thank you so much for that reply. I will tell her very shortly - just waiting for her to wake up and check her message from me and will then call her. I know she got the priority PCR and covid treatment info. And like you say hopefully she will get lucky and not have it at all - we had her sat by the patio doors all afternoon….
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That was a good move to seat her by the open doors.
I’m sure she’ll understand, @Marye. Everything crossed for you both. X
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That’s a real worry, however, you don’t need a +ve PCR any more, you don’t have to wait, if the lateral flow is positive, it’s all you need to access antivirals,
more info here
extract
Page updated 24 February 2022
As of 10 February 2022, there are new covid treatments available for people with blood cancer, and you can now access these with a positive lateral flow test rather than having to wait for a PCR test.
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Hi @Marye a great big welcome and I am so glad that you have found us.
I think @heatherthomas and @Fullofbeans have said all I might and probably better than I could.
Please do talk to the Blood Cancer UK support line if you need to and you could also give your mum their number.
Please let us know how you all get on and I would like to hear more about you.
Be kind to yourselves.
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Thank you all! So far she has tested negative as have my kids and husband so keeping everything tightly crossed we escape this time. Gosh its a rollercoaster!
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Hi @Marye If you find how to get off the rollercoaster please let us know !!!
Fingers and toes still tightly crossed for you all.
Please let us know how you get on.
Take care of yourselves.
Hi, hope you and your parents are ok. Try not to panic. I guess your parents have been boosted and this does give good protection. It is best to keep them up to speed and maybe get advice from 119. Your mum should have a priority PCR test issued by NHS and use it should she get symptoms. I got covid just a week after remission from NHL-4A (only had 1st and 2nd vaccine at the time) and recovered ok. Good luck stay safe.
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Hope you’re recovering okay Marye!
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Thank you all! So far she is still negative (as well as the rest of my household. She had her jabs, but was told she would have little immunity since stem cell transplant and hasn’t been strong enough to have them again yet.
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Good news @Marye.
Please keep letting us know how you all are.
Look after yourselves
It’s been a while since I was here
My son tested positive for covid 3 weeks ago today after unknowingly being in a meeting with someone who didn’t pass on they had tested positive for covid on the Tuesday
He received a call on the Friday that the person was positive, his works know I’m CEV my son did a test as he had a headache that wouldn’t shift and positive the test was.
I immediately upped the strict social distancing we have done since 2020
I tested negative
Sunday evening my eyes swelled and my joints aches and I took myself to bed waking up Monday morning with nose/forehead pain joints hurt lower back hurt eyes still swollen I felt sick took a LF it was positive I’m also receiving chemo for relapsed myeloma
I had watched the updated Feb 10th information YouTube video a few days before from Blood cancer Uk so I knew exactly what to do to access the new treatments
I called 111 because a positive LF is all you need now you don’t need to do the PCR
Before we started the conversation I told them I was immunocompromised with myeloma blood cancer and I was eligible for the new treatments
I was assessed over the phone, they passed all the information to my GP (it took 2hrs to get through) once I had spoke to my GP they referred me to CMDU - covid management delivery unit and I was having the sotrovimab infusion that afternoon with no side affects.
These need to be administered within 5 days so time is of the essence
Tuesday CMDU changed my antibiotics to stop any lung infections and they sent an oxygen monitor because I have had neutropenic sepsis before
I have felt like I have battled sinusitis/flu and tonsillitis all at the same time for the first week and the fatigue is something!
Lost my taste and smell have a cough and blocked nose, as of today I’m feeling much brighter
My anxiety of catching covid has been through the roof and thank goodness for the new treatments
I would suggest having the information at hand from blood cancer uk
Got home page find
Covid vaccine and blood cancer
Scroll down to antibody and antiviral treatments for people with blood cancer
All information is there
My hospital letter is out of date the latest information was in January
My team weren’t aware of the changes either
I was asked how I had successfully got to have the treatment
I suggested they update their information to patients
So A BIG THANK YOU @Alice_BloodCancerUK
This is well worth a watch also from blood cancer uk
Also to add to calling 111 I also called my consultants secretary to say I was positive and had to cancel my consultant app that same day and chemo the next day
The team were aware
I had a call from my nurse specialist to make sure I was having my transfusion and a follow up call the following Monday to see how I was doing
CMDU also liaised with my consultant
CMDU kept in contact each day for 5 days and I was given the number to call should I have anything I was worried about.
I tested positive for 13 days and had a negative LF day 14 and 15
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Dear @2DB, thank you so much for posting and we are so glad you managed to access the treatments and that the information we have help. It sounds like you felt pretty terrible but reading that you are feeling much brighter is brilliant. Sending you continued get well wishes. Gemma
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Hi @2DB gosh, what a shock and anxious time for you and just when you are feeling so rough and fatigued you have to remember the procedure you have to go through, I think you did brilliantly.
Thanks so much for talking us through your experiences and the Covid procedure, it is so useful.
Be kind to yourself and look after yourself.
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Hope your keeping well Erica
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Hi @2DB thanks for asking, all is well with my world here.
However the sun is shining and blue skies, which is lovely, but it is also raining, very weird.
I have done my pilates and Sainsburys has delivered with no substitutions.
What more could a girl want.
Take care
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Thank you so much, really good to hear that experience of the treatment. Sorry you had to go through it, must have been hard for your son too.
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Thanks all, you helped me get through a worrisome week. I have almost fully recovered in the week and everyone else is still negative. It’s day 7 so think we may have escaped…. I tried to edit the thread title (but couldnt on my phone) to say may have passed covid which on reflection is more accurate….
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Hi @Marye I have managed to change the title of your thread for you. I find it so difficult to accomplish anything on my phone.
I used the little pencil icon and then saved it by clicking on the tick.
Perhaps your initial title shows your anxiety and panic when you started your thread !!!
Take care of yourselves @Marye and family.
Please keep posting what’s going on for you.
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