Have you had Covid this year? Do you have blood cancer?

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Have you had Covid this year? Do you have blood cancer?
If so, we want to hear from you! With Leukaemia Care, Myeloma UK and Anthony Nolan,
we’re submitting evidence on how antiviral & monoclonal treatments have impacted our community.

Please complete this survey - Your experience of COVID-19 treatments (google.com)

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Yes, I believe my husband and I had covid for the second time in March of this year. I had nausea and felt fatigued for a week. I was diagnosed with cml in May.

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Thanks for sharing @PoppyDarling! Do feel free to fill out the above survey as it would be really helpful to hear more about your experiences with this.

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Hi Alice. I’d be happy to fill this survey in but as I started I realised there’s a problem - it’s very hard to answer if you’ve had Covid twice.

I got it before the new medication was available, and it was pretty bad (hospitalised etc). I then got it six months later when the new meds were available, and it barely made a splash (testing negative after a week).

What that means is I don’t know how best to answer a lot of questions. For example, was I (a) hospitalised for treatment or (b) given treatment but not in hospital, it only allows one answer but both are true. Other questions are similar.

Anyway, just wanted to give that feedback in case it helps for future surveys. I can simply give you written answers if you want to send some questions outside of this forum if that would be of any use, though I’m only one subject, and not special!

All the best with it.

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Hi @Cid I will copy your post to @Alice_BloodCancerUK for you, sorry you have had these problems.
Look after yourself

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Thanks for this Cid, that’s a great point and I’ve flagged it with the team so we can make sure we structure future surveys in a way that accommodates the experience of people who have had Covid twice (I’m sorry to hear you have!).

If you’d like to fill it out, it’d be helpful to hear your experience of having Covid the first time (when you were hospitalised).

In response to: “Did you test positive for COVID-19 after 16th December 2021?” you can respond “I have tested positive on separate occasions both before and after the 16th December 2021”. It will go on to ask whether you received treatment, and you can say “Yes, I received treatment in hospital”, which will open up the questions on hospital treatment for Covid.

I appreciate this is only half of the picture but it would be great to hear more about it if you can spare the time.

Thanks so much.

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No worries, I’ll do that now.

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Hi

I haven’t had Covid but my WBC count started rising after my second vaccine. Following my third I suffered the symptoms of Covid, testing negative. I now have Long Covid and have recently been diagnosed with Chronic lymphocytic leukaemia (CLL).

Let me know if I can be of any help.

Johanna

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Hi @Johanna1,
Thank you for your post, and I’m so sorry to hear that you have been dealing with long covid as well as your new diagnosis of Chronic lymphocytic leukaemia (CLL). May I ask how you’re coping? I wanted to reach out to say if you’d like to talk any of this through, you’d be very welcome to get in touch with our Support Team, and we’d be happy to support you ( Blood cancer information and support by phone and email | Blood Cancer UK).

In case it’s useful at all, you can order or download our Chronic lymphocytic leukaemia (CLL) booklet here- Chronic lymphocytic leukaemia (CLL) booklet | Blood Cancer UK Shop.

Thank you so much for offering your help, we do appreciate this. If you’re happy for me to, I will check in with my team around this and get back to you. Do take care of yourself in the meanwhile, and remember we are here for you.

Best wishes,
Tanya.

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Hi @Johanna1 we are such unique, complex beings, but I am sorry to hear what you have gone through during Covid times.
Thanks so much to offering your support to others, have you had support at all?
It is so difficult with diagnosis that cannot be seen by the outside world.
I cannot better @TanyaBloodCancerUK post.
Please keep posting because I look forward to hearing more about you.
Look after yourself

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Hi @Johanna1 I have been thinking of you,
How are you doing?
Look after yourself

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Hi Erica,

Thank you. I am doing ok.

I had a hospital appointment last Friday and a blood test that knocked me out. I hadn’t realised I was anxious and so by the time I got home I was on the sofa, not moving for the day. Just have to wait for the blood results now, which I am sure will be fine.

I am just plodding along

Johanna

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Hi @Johanna1 yes, plodding along sounds good to me.
I have found if I am anxious then I tell the medical person and they really help me through it.
Be kind to yourself and please let us know how you get on

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Hi Erica,

I just felt the need to communicate this morning. Have just seen my GP and managed to get my hospital blood results.

Although everyone is happy with how I am doing I feel a bit disappointed that my WBC have gone up slightly…still nothing to worry about but just hoping they wouldn’t. It feels a bit like getting the diagnosis again.

I knew that every time I went to the hospital or got a result I would probably feel like this, but had hoped it wouldn’t…

Onwards and upwards!

Best wishes

Johanna

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Oh @Johanna1 my emotions have been on high alert since my diagnosis 18yrs ago and yes, instead of being happy, as everyone else is, to all the good results I focus on that one result with eagle eyes and my emotions are all over the place.
I think it is natural.
Celebrate the good bits, I celebrate everything with a hot chocolate!!

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Thank you Erica!

It is reassuring to know it is ‘normal’!

Johanna

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