I was diagnosed a year ago with ET, current treatment is Hydroxycarbamide an today tested positive for covid after a bad night last niggt, do i need to do anything specific?, cant believe i managed to avoid at its height an caught it now. Do i need to contact blood nurse or anything or just plod on? Thanks for any guidance
Hi @Colinb sorry to hear you’ve caught Covid! Yep, get in touch with your haematology team as soon as you can and let them know, and let them know you had a bad night. As you’ve got ET and you’re on Hydroxycarbamide, you’re eligible for an assessment for post-exposure treatments. You may want to read through and share this with them - https://media.bloodcancer.org.uk/documents/Blood_cancer_and_covid_medicines_UK_September_2022.pdf
You can read through the process around getting an assessment for antivirals here - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK. It’s under the section ‘How to get assessed for treatment’ and there’s information for all four nations of the UK.
Please don’t hesitate to call our support line if you want to talk any of this through or if you need any support with this. Our number is 0808 2080 888.
Wishing you a speedy recovery! Alice
Oh @Colinb so sorry to hear that you have caught Covid and that you have had a bad night.
@Alice_BloodCancerUK has given you the information you need.
What I would say is to really look after yourself and be kind to yourself and don’t ‘just plod on’.
Thanks for this, im a 64 year old man who served in the Army (a lifetime ago) and believed i can manage most situations but felt so miserable i had a wee greet to myself this morning, something i havnt done in years, so thanks for the support and advice.
So sorry to hear this. I’m currently avoiding it in my household as my daughter has it for the third time ( she is a midwife) I have had a twice too though both times I reported my test on line and both times I received anti viral meds really quickly and these helped me enormously.
Hope you are well soon
Please keep a updated on how you are doing @Colinb
Hi @Colinb you definitely have a forum family here too
Having a blood cancer certainly means being on a emotional roller coaster for me.
Day 2, up all night with cough, high temp all night, seems like every bone in my body is objecting especially my legs. Covid team didnt get a response from hospital haemotology dept and they are saying same about covid team so no word on whether/when i will get anti virus. A case of watch this space,xapparently they have 5 dsys to make a decision.
Oh @Colinb it sounds as if you are going through a really rough time, there is nothing worse than not getting a nights sleep.
Why can life be such a struggle to resolve issues when you feel least able to fight the cause.
I will copy your post to the Blood Cancer UK nurse advisors in case they can add something @BloodCancerUK_Nurses
Be ever so kind to yourself.
Hospital pharmacy just called, seems im not a high risk category so wont get anti virus, i think thats positive news
How are you feeling now @Colinb?
Take lots of care
Slightly better than yesterday, not freezing one moment or roasting the next. Still got headache, pain all over, no real appetite though. My wife tested positive this morning so both suffering now.
Hi Sorry to hear you’re unwell .
I have ET and am also on Hydroxycarbamide. I tested positive for covid last year but would have been unaware if my husband hadn’t tested ! I had very few symptoms, more like a cold, though I was very weary that week . I was unaware of the need to contact haematology.
Im almost 70 and I guess we all as individuals react differently to Covid .
My platelet levels and all other things like WCC are at the moment all within normal limits so my consultant explained I’m not at any more risk than most people my age as I’m not immunosuppressed.
I hope you are now well on the way to recovery
Always best to contact the experts at any point if you feel extra unwell or the need of reassurance.
There’s no shame in having a good greet. Sometimes we just need to greet.
Just remember you’re not alone. We’ve all done. I have many times.
Also they say it’s a five day window but can be extended to seven. I found that out by the people who provide the antiviral treatment but do persist with them. Hope you feel better soon.
Sending you big hugs.
How are you doing @Soozy?
Thank you for asking.
I’m in remission at the mo. I’m so grateful. The thing that is getting me down is the shielding still and not being able to do all the things I did before. I heard that Eversheld is not being approved as they don’t think it will work against current strains if the covid virus. Although it’s privately available at an extortionate price. Just wish they would hurry up and sort something out h go of us so we can get to some normality.
How are you?
Hi @Soozy a great big welcome and it sounds as if you have had Covid.
I look forward to hearing more about you and also your Covid experience.
Look after yourself
I haven’t had covid, the tests were faulty but they gave me the antiviral meds Paxvolad. They were the ones that told me that about the 7 days.
Hop red you are well.
Hi @Soozy. That must be really tough. I found shielding very difficult for the time I did it but it must feel forever for you! Have your medical team advised when it may be safe for you to start venturing out?
I’m ok thank you. I’m on active monitoring for follicular lymphoma. I teach in a primary school and I think I’ve built up a good immune system over the years and am hoping the vaccinations have built it up a little more to x
I have follicular lymphoma too but have been advised that it is one of the lymphomas that will need anti viral treatment and we can get really poorly if we get covid.
What have your team advised you? I still wear masks everywhere and still have windows open when I have visitors.
Although I had stage 4. Not sure if that makes a difference.
So you work with children. They’re always poorly. I know my grandson is.