Best of luck @CathyG to you and your husband. Thinking of you both. X
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When I initially came to the forum I titled my post “Experiences of Coping” because my Other Half had just been diagnosed with Acute Myeloid Leukaemia. I was terrified (still am a bit) because we didn’t know what to expect and felt we had no future. Two cycles of Chemo ‘Lite’ and then a cycle of Industrial Strength chemo later - none of which worked and he was declared terminal last September and given just ‘months’. The day after that diagnosis he tested positive for covid and almost died. Last November he was put forward for a drug trial being run by the Christie Hospital in Manchester. Well, we’re 6 months on from that and he’s still here, still functioning and living good quality of life and up until 3 days ago when he contracted covid AGAIN!!
Today he has been to the hospital for an infusion of Sotrovimab to help prevent serious illness or hospitalisation - let’s see what happens there.
My thoughts today are firstly, ALL HAIL THE SCIENCE and second, to say that whilst life is far from mapped out and we still have no idea what the future holds I now feel totally different and feel more able to cope with whatever comes. It is truly horrific to be given a life limiting diagnosis and especially in the midst of a pandemic - Ha, could it get any worse! But we all have reserves of emotional strength that we didn’t realise we have and you learn to live a different life. We look now at what we can do and not what we can’t, we take pleasure in small things and try not to sweat the small stuff. You do really get enormous strength from family, friends and the absolutely AMAZING health professionals and these people carry you forward on a tidal wave. So, I just wanted to say, there is life still to be had even when you think there isn’t and you cope better than you think you will.
Now if this ******* covid would just leave us alone we can carry on carrying on.
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Wow @CathyG I am blown away by your post and your newly found philosophy.
I have to say your Other Half is very unlucky to contract Covid twice, but medical advances have been made since last September.
Yes, enjoy every day is so important and the best things in life are free, like relationships.
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@Erica - well, the update is that he had an infusion of Sotrovimab and it worked wonders!! Aren’t our scientists BRILLIANT !
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They really are. I’m so glad it helped! X
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Yes, @CathyG absolutely brilliant and, it might not seem it but, they have worked so quickly in the circumstances.
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Good morning all, I haven’t posted for a while but thought I’d give an update on my husbands situation. Last September he was given a terminal diagnosis (Acute Myeloid Leukaemia) after several failed rounds of chemotherapy. In November 21 he was accepted onto a clinical trial and miraculously he’s still here, still well and living a relatively normal life. He’s still dependent on weekly blood transfusions but his chemo has now been reduced from monthly to every 3 months and he takes the trial drug 5 days a week. The trial doctor at the Christie in Manchester is very pleased with his progress. We know this isn’t a cure and targeted therapies have a habit of failing but as things stand we’re happily getting on with life.
I would urge anyone to try a clinical trial and don’t necessarily wait for someone to find one because you can look them up via the various cancer websites and the NHS also has a link to clinical trials. I don’t know if people know you can refer yourself? Your medical team have to be involved obviously but patients can make the initial application themselves - I stand corrected if this isn’t the case but when you look it does seem that way.
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Hi @CathyG that is really good news for your husband and yourself.
Just to let everyone know the Blood Cancer UK have a Clinical Support team too which helps and advises, For any queries about the forum, or about blood cancer, you can contact our Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Look after yourselves, enjoy yourselves and have fun
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So pleased to hear this, @CathyG! Thank you for updating us. And really useful to know how to approach getting on a trial.
Wishing you both all the best. X
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Wow - that’s so good to hear @CathyG. Clinical trials and research is just so amazing and I’m so glad he is doing well 
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@Erica, thanks for highlighting this link. I really do feel it’s important that people have access to as much information as possible about clinical trials. At the time of his terminal diagnosis my husband was told by his consultant that there were no suitable trials available but his haematology nurse did a bit of digging and contacted the Christie about this trial. I don’t know why but it wasn’t published on the usual lists - I looked but couldn’t find it anywhere other than the Janssen website. We will be forever grateful to that nurse for not letting it lie.
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