[sdfsjdklParticipant]

I do hope they are able to give her pain relief for the procedure. The waiting is dreadful but it’s also terrible to watch someone you love in pain. Sending you all strength and may the time pass as quickly as possible til a negative covid test and more information. Poor thing having covid on top of it all.

[sdfsjdklParticipant]

I don’t have any advice to offer you as I am new here but I just wanted to send you my sympathies as this sounds just awful for you all. Sending hugs – there are some such kind people in here who have offered really helpful advice so I am sure they will be in touch.
Rachel

[sdfsjdklParticipant]

Hi Rosary
Sorry for the delay – things have been so hectic lately…
My dad has now had a phone appointment with the Lister hospital haematology dept (it’s in Stevenage, Herts) and the doctor was very kind and reassuring. He seemed to say that the test results were consistent with my Dad’s age. thanks to this website I got my Dad to request a bence jones test and that looks to have come back negative. The consultant is doing more blood tests in 3 weeks and in 4 weeks he is having a full body PET scan to give him a full check over. All the waiting is difficult but in reality we’ve been lucky to have had quite quick feedback and results. But I was going out of my mind when I first posted here and now I am feeling more calm.
Big thanks to everyone for their kind sharing of information and experience
Rachel

[sdfsjdklParticipant]

Dear Jane
Thank you SO much for your very calming and informative reply and I’m sorry I didn’t see it before now – I thought i would be notified if I got a reply for some reason.
I’m reassured by your message so thank you very much and I was very much in a panic initially. I am feeling a little calmer now. We have had confirmation that Dad has a Haematology appointment over the phone with the team at the Lister hospital on 4th Dec so we will see what they have to say. It still feels a way away to me, but I’m sure the time will pass quickly and I am extremely grateful to you for your reassuring words.
I think my expectations around feeling written off have been coloured by my father-in-law’s experience with pancreatic cancer which was extremely shocking and sudden and he was offered no treatment whatsoever which was very upsetting. Looking back it’s clear there was not much they could have done but they could have handled the situation a little more sensitively.
I am still combing through information but I am incredibly grateful to everyone who contributes in forums like these which are so helpful to others. Hope we can contribute helpfully too when we have a bit more experience and understanding.
Thanks again Jane, so appreciated.
Rachel

[sdfsjdklParticipant]

Just seen that light chain numbers are 21.5. I am worried as it says “above high reference limit”.

The x ray also shows degeneration in the shoulder and thoracic spine but I don’t know whether that is just consistent with his age or whether it’s to do with this?

[sdfsjdklParticipant]

Hello Phil
Nice to hear your story so far. I have just joined today on behalf of my dad, who has a similar sounding story – usually active and healthy, he suddenly developed fatigue and swelling in one leg and the GP basically told him he was just old! We pressed for a referral (I’ve made a post with the full story) and now we are finding paraproteins and light chains, things we never heard of before, are not quite right. We are still in the very early stages of finding out what’s going on – only had the light chains back today. but feeling much more hopeful since reading posts in this forum which is a godsend.
Wishing you well with your treatment
Rachel

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