[mrsdoyleParticipant]

Hi Dave, thanks for sharing. I’ve just finished my chemo and had my 1st monthly cycle of daratumumab. I had a video call with London today and they were really happy with how I’ve responded to treatment which is promising.
Have you ever got back running since your diagnosis??

[mrsdoyleParticipant]

Hi Matt, please call me Claire ☺️ and thank you for sharing your information. That was indeed a quick diagnosis you were lucky your doctor’s seemed to be generally concerned. It took me from Aug 2021 to Feb 2022 to get my diagnosis and I have now lost all faith in my GP as I had told him from the start what the issue was. I had a work medical and it flagged protein in my urine and I hadn’t been feeling quite myself so it made sense. I was given antibiotics and then spent the next few months still telling them that I wasn’t well, it still angers me when I think back to all the excuses they were telling me.
I’m feeling much better today after a couple of dodgy weeks, I just expected to be feeling much better when my chemo was over and then the fluid started to build.
How old are you Matt if you don’t mind me asking?

[mrsdoyleParticipant]

I think that by sharing your story you do help others, I’m really glad I came across this forum as it’s still all new to me and I feel like I have so many questions about the unknown??

Thankfully today my fluid seems to be starting to shift.

[mrsdoyleParticipant]

Thank you for sharing such personal information Leslye, I really appreciate it and I’m glad I’ve found this forum.

[mrsdoyleParticipant]

I’m so sorry to hear about the loss of your husband during your treatment Leslye, that must have been hard on you and understandably made your recovery longer/harder.

Thats very encouraging to hear that you are 9 years post SCT this November.

Apart from attending the NAC annually, do you have any regular check-ups with your GP or hospital?

[mrsdoyleParticipant]

I think that’s just a natural emotion Matt.

How long did it take to get your diagnosis and what was your symptoms??

[mrsdoyleParticipant]

This is lovely talking to others who are on the same journey. I found the other forum after it had closed 🙁
I am from just outside Glasgow and was at the NAC in March, I have a video call scheduled mid November now that my initial treatment has come to an end.
My haematologist is glad the chemo is over for now as my bloods are starting to show signs of fatigue and to be honest I thought I’d be feeling much better at this stage, have struggled with my retained fluid the last week and also been really breathless but I’m sure as the weeks go by I’ll hopefully start to feel better.
I’m 46 and was a keen runner before and really hoping that my fitness comes back in the near future. How was your recovery Leslye?? I am in touch with a small group in Scotland who have zoom catch ups every couple of weeks but have only joined the meeting a couple of times. I’m so glad I found this forum.

Claire x

[mrsdoyleParticipant]

Hello, I am new to the forum also. I was diagnosed with AL amyloidosis in Feb 2022 having just gone through 6 months of chemotherapy. On Monday I start my 4 weekly daratumumab injections for up to 2 years.
Would be interested to see how this condition affects others??

Claire D

[Author]

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