[linseyhewettParticipant]

Hi,

I just want to give a bit of positive feedback about my amyloidosis, it’s not all doom and gloom.  I’m 45 and diagnosed almost a year ago now (after having a stroke)with mostly heart involvement, I had CVD 3 cycles and my light chains came down after the first.  I am now 3 months post chemo and feeling much better, I can walk further without getting too breathless and even going to the gym a bit.  Being on the diuretics has made my breathlesness and swelling go mostly and I am trying to cut down on them.  The amyloid centre has been great and my care has been wonderful.  I will go in a couple of months for stem cell harvest for when it comes back again-touch wood it won’t be for a good few years. I was terrified after diagnosis and when I looked it up on the internet I didn’t sleep for weeks but in my case all is going well so far.  Good luck to all of you and I hope your story will be as positive as mine.

[linseyhewettParticipant]

Hi Sandra,

Yes I think we must be fairly local, I live in Maldon – moved here in October from Loughton while all this was going on so been a busy summer/ year!!

Sorry to hear you haven’t been well, is that to do with the treatment? or the condition? sorry to be nosy.  I was thinking that things might start dropping after fewer cycles ( trying to be an optimist), 7 seems quite a lot in one go – how are things progressing for you on that front? Do you have your treatment at Broomfield? Don’t know the hospitals round here that well although I’ve got to see quite a few since August :-).

have you found that there is a general pattern to the treatment? How does it go for you? Have they had to adapt any of your treatment.  One of the hardest things for me has been getting to grips with all those tablets going from nothing to 10 has sent my head reeling and makes me very stressed every day even though I have one of those old lady boxes which I fill up weekly and I used to be a nurse so I have a little bit of medical knowledge. No one I know has ever heard of this though!!

Thanks for replying, it makes me feel less lonely knowing that others are out there going through this.  hope the feeling ok last a long time. Please keep in touch.

Linsey

 

 

[linseyhewettParticipant]

Thank you Pat,

Thank you for replying, it’s great to know there are people out there who are prepared to give a little time to help you through this, even with the support of family and my partner is fantastic and so understanding and caring it’s such a stress for him too.

I have been very busy today and spent most of it doing housework,even took the dog for a walk which I haven’t felt able to do for a few months- poor thing, like you said I think it must be the steroids. This must be the norm then, on my first dose which I have on Thursdays I was ok then Friday and Saturday I was busy and felt fine, but Sunday I was sick and in bed half the day and felt terrible which slowly seemed to perk up until Thursday again.  It’s very difficult to know how to plan things at the moment.  I decided to take the Thursday and Friday off work, but I should probably have taken the Monday instead.  They said different things might still happen after the second dose, wait and see I guess. I have been a bit extra worried because the initial plan was to admit me on a cardiac monitor until after the second dose but then they changed their minds.  Obviously its great not to be in hospital, who would want that, but it made me more worried and I haven’t been sleeping well.

Moving forward it seems like there might be a pattern, which is something I think can be managed in a positive way. It will be good to feel well on a Saturday!! Next course they are talking of increasing the velcade to a higher dose and then on the third course I hope to be able to move the treatment from the Royal free out to Chelmsford so we don’t have to do the drive every week.  That will be something to look forward to!

You are right, it’s good to be positive but when you are alone or at night when you can’t sleep, it’s sometimes hard to get your head round the enormity of the situation and that it will be for ever.

Thanks again – it’s good to offload.

Linsey

[linseyhewettParticipant]

Hi,

 

I just rang the myloma helpline to see if there was anyone out there who I could talk to who was going through the same as me and when she showed me the discussion forum the first post to pop up was yours so I am very happy to be getting in touch.

I was diagnosed with cardiac AL amyloidosis at the end of November although my paperwork now says systemic AL ( need to discuss that with my consultant next week) – I thought they only found the amyloid in my heart and have just started the first course of Chemo, my second velcade injection was yesterday.  I’m having CVD like many of you. I am 44 years old with 3 teenagers and have been used to being very active and fit up until the summer when I had a stroke, since then things have been a bit of a whirlwind of worry and stress and medication and not knowing what to expect.

It would be to discuss how the treatment is making you feel and what I might expect. it is such a worry.

Linsey

• This reply was modified 9 years, 11 months ago by  linseyhewett.

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