I have a question about Covid which probably relates to many people with blood cancer. If you show a positive lateral flow test and then PCR test, what do you do if symptoms start developing? Do you go to your GP for antivirals to give yourself a fighting chance, or wait and see if you get worse and need hospital? We are hearing a lot about antibody treatments at the moment. Are they commonly available to blood cancer patients? I would like to be as prepared as possible as we learn to live with Covid. Thank you.
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Hi @Carolly a very good question which unfortunately I cannot answer, but thatnks for asking it.
I await to see what answers we get,
Look after yourself
Hello Carolly
This is a very good question and one that perhaps I should have asked my consultant at our last phone appointment! Im on watch and wait with myeloma and quite honestly can never think of anything to ask him when the time comes.
I have what I assume is a head cold atm and a lateral flow test was negative so Im going with that! I hardly leave the house at all now so am "isolating " I guess.
Just reading in the Telegraph tonight that the Government are speeding up the antivirals and they will be sent to anyone CEV/immunocompromised testing positive within 48 hours of a positive PCR to take at home. Fingers crossed this turns out to be the case and is definite.
Think they have some making up to do after the 3rd jab debacle.
I dont expect the world to stop for me but sometimes it feels like we have been left to get on with it. Agonising over meeting a friend for lunch or going “out” somewhere in the evening. Its like those things are off limit for now.
Best wishes to all
Sue
Im
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Thanks Sue that is very interesting. I agree we have to find our own path through this with as much information as possible. I had to fight for my 3rd vaccination and it was Blood Cancer UK that let me know what I had to do!
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My question is “Do they know who we are yet?” I may have a little more confidence of that if I do not have to fight for my booster in the new year. In the meantime I am still effectively shielding. I wonder if the government actually knows how many of us are still doing that? Stay safe everyone.
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I am assuming that we are on the “shielding list”? I havent had to get a PCR test at all but presumably if I did then it would be flagged up at that point that I am immunocompromised and would require the antivirals if positive? Have to hope for some joined up thinking! Failing that I suppose enlisting the help of consultant/CNS maybe to access the required medication.
I am not sure if GPs would be involved? So many stories locally and more widely of the difficulties of accessing appointments etc.
Hopefully we will hear more about this scheme soon.
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Hi @Lockdownsue60 I think if in doubt it is my responsibility to tell or educate the medics.
We await further info I think.
Look after yourself
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Hi @Carolly how are you doing? You might find our webpage here helpful - Blood cancer and coronavirus symptoms | Blood Cancer UK.
The UK government has said that finding antiviral medicines will be one of the main ways to protect people from covid after vaccination. We expect to hear more information around the practicalities around distributing antiviral treatments to people after a positive Covid test, imminently. We will keep the blood cancer community updated.
This page talks about what we know so far about some of the antiviral treatments - Antibody treatments for people with blood cancer | Blood Cancer UK.
It also talks about antibody treatments such as Ronapreve, which is already been given to people with blood cancer in hospital with covid. It explains,
If you have blood cancer and you go to hospital with covid, make sure the hospital knows you have blood cancer and that you should be tested for antibodies and possibly receive Ronapreve. You could take a letter from your hospital or GP with you, to show your medical department contact details or diagnosis. Make sure you take your main doctor or medical team’s contact details with you. Or, use our medical information card (just download it and fill in your details, then print it or take a photo on your phone).
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I have Myelofibrosis and contracted Covid at the end of July. I live in Portsmouth and was advised to let my Oncology department know that I was ill. Antivirals weren’t readily available at the time. My condition worsened so my husband rang 111. They were extremely helpful, I spoke to a doctor and they placed me on a virtual covid ward at home. This meant that I had phone calls twice a day and had to check my temperature, blood pressure and oxygen levels. The monitoring continued for 10 days by which time I was starting to recover. I never felt that I was battling the illness on my own and was so grateful for the support I received. It took me approx. 3 weeks to fully recover and I have no ongoing I’ll effects.
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Wow @Jstubbings your Covid experience sounds really scary to me. It seems that you got very good care, albeit on a virtual ward. I have not heard of them before, but they sound brilliant, there is nothing like your own bed and home comforts. You say it all when you say you say that you never felt that you were battling the illness on your own.
Look after yourself and please keep posting how you are doing.
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