[leslyeParticipant]

Good morning

I hope this doesnt get printed twice but apologies if it does!
I have AL Amyloiid – diagnoseed in 2012 – Cbord Jan to June 2013 with SCT in November 2014.
The NAC Amyloid forum has since closed down which is such a shame as it was a great source of information.

Myeloma UK have personally supported me on my Amyloid journey and I will forever be grateful to them for supporting me at my times of need.

Would love to hear from other amyloid patients etc.

[mattlParticipant]

hi Leslye,

I have AL amyloid.

I was diagnosed in august 2022, have been to the Royal Free hospital, Hampstead Heath for the three day test and scans, and am now to-ing and fro-ing between UCH euston road and McMillan cancer centre, Huntley street.

have just started my chemotherapy oct/nov 2022.

i`m near gatwick airport, sussex/surrey borders, whereabouts in the country are you?

just discovered the nac forum for amyloidosis is being closed, very very sad news

regards

matt

• This reply was modified 1 year, 6 months ago by  mattl.

[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

[leslyeParticipant]

Hi Matt and Claire
Great to connect with you both
Matt I’m just outside of Manchester. I commute to the NAC once a year. I’m a bit of a veteran as it’s 9 years post Sten cell transplant on 19th November

Claire, that’s great you’ve completed yr six months chemo. It feels never ending doesn’t it?

How are you both feeling. It’s a scary road even now for me but we Amy patients do support one another

I’m extremely grateful to Ellen Watters from myeloma for supporting me every step of the way

Hopefully we can stay in touch?

Leslye xx

[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

[mattlParticipant]

hi leslye, claire,

so far it has all sounded quite straightforward, but now i`m getting scared and apprehensive!

matt

[mrsdoyleParticipant]

I think that’s just a natural emotion Matt.

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

[leslyeParticipant]

Hi all
Matt I think it is a very scary process and I guess it’s something everyone feels as we are all different in how we react. My recovery, I think, was longer than normal. I lost my husband during cycle 4 of my chemo and that same year I also had my sct. I look back and know I hadn’t grieved properly so my recovery was quite long.
I’m 9 years post sct on the 19th November. The years have gone by so quickly. I still have weak legs on incline ( this took me to the dr in the first place) and I get tired more easily ( number one complaint I believe).
Hope I have answered everything every one asked. So sorry if not. X

[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?

[leslyeParticipant]

We had a tough few years myself and my boys but as I say I’m now 9 years post! I attend London once a year and go 3 monthly to Manchester royal Infirmary ( where I had my stem cell) every 3 months. No further treatment so far but I do say that with caution!
Xx

[mrsdoyleParticipant]

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

[leslyeParticipant]

That’s no problem. I only tell my story as I hope it inspires others. I fell into a very deep dark pit after my sct but thanks to my dr and copious amounts of counselling I am here today to hopefully support others. Xx

[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.

[mattlParticipant]

hello mrs doyle,

sorry for the delay in replying, i have been the luckiest person in the world! my diagnosis was done in 3 weeks!!

symptoms that led me to A&E was breathlessness, just couldnt take in air, doctors fixed it but then came back and said I had a serious heart condition, they wouldnt give up trying to find the answer, after many many scans was told it was cardiac amyloidosis.

now i know more, there were symptoms, during lockdown june 2020 my ankles and feet swelled up, i just thought it was because i had been doing physical work all my life and then bang, we all stopped and i sat indoors a lot drinking tea!

matt

[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?

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