[SandrablParticipant]

Hi All

I started this post over a year ago and would like to give an update. I am 51, and have Cardiac Amyloidosis.

Firstly I would like to thank you Pat…… one thing stuck in my mind at the beginning of this battle and that was your words “There is a tomorrow and a tomorrow and a tomorrow” I have never forgotten this and you are so right 🙂

I did 7 cycles of CVD between March 2014 and January 2015. It was not an easy journey and my treatment stopped because I could not tolerate anymore physically or emotionally.

It is now 7 months since I have had any treatment and I have thankfully maintained an amazing response to the CVD. My Flc’s are very stable ( tested every 4 weeks by NAC) and my heart failure Pro BNP measurement has fallen from 2330 last July to 292 this July….. I am not quite sure what this means with ref to heart wall thickness until I return to NAC in October, but something else I do, thanks to Pat, is listen to my body. I know I am not the same as I was before in many ways; I know live in the “slow lane” and I still get very tired, but hey….. I am good 🙂

Last month I enjoyed a short holiday to Spain- travel was something I never thought I would be able to do again. On previous short flights before the diagnosis my ankles would swell dreadfully and the last time I flew I was very ill….. This time I had no swelling at all! The travel was made so much easier by using special assistance at the airport….I would highly recommend this service.

Now I take each day as it comes….. if I feel like it I do it…..

It is good to hear how everyone else is doing….. keep positive…..

Much Love

Sandra

[SandrablParticipant]

Linsey you are just up the road from me….I have my treatment at Colchester general Hospital, although am under National Amyloidosis Centre in London. Colchester have never treated Cardiac Amyloidosis, but my haemotologist is now well on board and between him and london we manage well.

There has been no pattern to my treatment. I started chemo last March and was so ill to start with- had to be in hospital for first treatment to see how heart reacted. Then in the summer i picked up a bit – would have treatment on a Tuesday, be bad for two days and then be okay. Cycle 6 was tough, and cycle 7 I did fortnightly – numbers still continued to drop but side effects got unbearable. I am postponing cycle 8 until January. Steroids had to be halved as i got myopathy in my legs, and velcade has been reduced in cycle 7 due to numbness in hands and one foot! Haemotologically I have done very well…. numbers dropped very quickly and continue to drop even now- all FLC’s are now in range. They measure my Pro BNP every month as well. This a a heart biomarker that monitors heart failure- this has fallen amazingly. There are some superb help groups on facebook. Do you have facebook? You need to educate yourself on this condition and stay positive and fight fight fight….. I was stage 3 heart failure as a late diagnosis…. given 3 months to live last Feb and I am still here and doing very well. I have such good weeks inbetween treatments and feel best I have in years 🙂

[SandrablParticipant]

Linsey Hi

I am in Colchester and I think you may be local to me….. I am 50, have cardiac amy like you and have just finished cycle 7 of CVD….. any questions you have please ask. Sorry I havent replied before…. have had bad couple of weeks but am okay again now 🙂

Much love

Sandra

[SandrablParticipant]

Pat
Thank you so much for your reply. It is so lovely to hear from someone who can put my feelings into words and understand ….I have just finished cycle three of a possible eight and am due back to NAC in two weeks. Most days I am terrified that I wont wake up, but as you so rightly say there is a tomorrow and a tomorrow and a tomorrow …..I will remember that little priceless snippet each day 🙂
I have educated myself with enough knowledge on this disease to write a book, but I also realise each case is so unique. You are so right in saying listen to your body….. i can never tell from one day to the next how I will feel. I keep my spirit high, eat well, sleep if i’m tired….do what I can, and if I cant, it doesnt matter.
I have stopped work as I just want to give myself the best possible chance. Treatment is working wonders with reducing sflc’s, but I am not sure what is happening to amyloid which is deposited in my heart wall. Every ache/pain I panic. Next week I have echocardiogram at local hospital, and then I see cardiologist, then following week back to NAC. My response to VCD side effects is very similar to yours except I have to be on low salt diet and fluid restriction as the treatment is causing my ankles to swell, only certain days thou…. I take a low dose diuretic each morning and have these socks like flight socks which help as well.
Thank you once again for offering your experience…. it certainly helps me to keep up the fight.
I hope your journey continues to be positive,
Much Love,
Sandra

[Author]

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