[SandrablParticipant]

Hi…. I am so relieved to have found this forum. I am 50 years old, diagnosed Cardiac Amyloidosis Feb 2014, currently undergoing velcade, dex, Cyclophosphamide treatment. Am under NAC , scared but still here….Any one else have cardiac amy?

[PatGParticipant]

Hi Sandra, I don’t have cardiac Al mine is kidneys, liver, spleen and nervous system so I can’t help with the cardiac symptoms I’m afraid. I was diagnosed Sept 2012 nod had 8 cycles of VCD. Velcade had to be reduced to once weekly as my body could not take the twice weekly treatment. The cyclophosphamide thinned my hair, the velcade increased my peripheral neuropathy and the dex gave me so much energy but kept me awake at night! All in all not too bad and here I am now feeling so much better with the AL ‘stable’ everything being monitored with blood tests going to NAC each month and the others every 3months. I am 68 now and glad I am now in a place where I am not so absolutely terrified. It does get better as you learn what your body is telling you. You HAVE to listen to your body and realise that there will be limits on your activities for a little while. The terror at this stage does not help, but learn all you can and be assured that there IS a tomorrow and a tomorrow and a tomorrow. Good luck with your treatment and let us know how you are progressing.
Love
Pat

[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

[eveParticipant]

Hi Sandra

Just to say welcome

As you know your condition is rarer than Myeloma! I believe 600 cases a year,I would go back in to Related Conditions,you should find a few in there with Amyloids in the heart,they one I am thinking of is an Ozzy who lives with this condition who also travels,so might be worth a search.

Good luck on your journey,my saying is why worry about tomorrow and spoil to day,it’s kept me sane and fairly up beat these last few years on this roller coaster. Eve

[lou56Participant]

I was diagnosed with Cardiac AL Amyloid in September. I am 58 and had no idea as to how ill I was. I had pacemaker fitted before starting Chemo I have CVD chemo at Barts each week and I am under NAC too. Very scary as have no idea what the future will bring although I have been told I am responding to the treatment well.

[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.

[PatGParticipant]

Hi Linsey,
I’m not sure I will be able to help much as I have no cardiac involvement. Mine is kidneys, liver, spleen with minimal nerve involvement. It has destroyed my kidneys and I am in pre-dialysis talks at the moment. That said the Amy is stable and has been since finishing treatment in June 2013.
I had to have the twice weekly cel are injections reduced to once weekly as I was not tolerating it well but apart from stringing the treatment out it didn’t seem to make any difference. The main side effects for me were peripheral neuropathy from the velcade and sleeplessness from the dex. I loved the energy burst from the dex but didn’t like the come down days. Overall, I was tired and some days I admit I felt like pulling the duvet over my head, but so what? The next day was better.
The only real advice I can give you is go with the flow, listen to your body and do what you feel like doing when you can. Try to plan exciting things for your energy dex days and don’t waste them on housework. I actually had cleaners while on treatment and ordered my groceries on line but then I am much older than you (69)so you may have more energy than me. Try and leave the stress behind. You can’t change what is happening but you can accept and look forward to the end of treatment and a return to some sort of normality. Believe me I do remember what it all felt like and it took a little time to accept, but was so much better once I did. I am going through a similar phase with all the dialysis decisions at the moment and trying to regain the acceptance part. It’s scary because it’s unkown territory as it is with you at the moment. It will get better Linsey and hopefully give you a good outcome.
Sorry I can’t be of more help but please ask if there is anything else and I will do my best to answer.
Take care my dear, and keep positive. It really helps.
Pat xx

[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

[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

[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

 

 

[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 🙂

[paula07Participant]

Dear All,

My name is Paula and I am 43 years of age and live in Perth, WA

I have found the above entries so helpful, it has allowed me to believe that things can and will get better.

I have cardiac amyloidosis and MM. I have just finished four cycles of the VCD which sadly didn’t bring the number of proteins down. I have recently commenced revlimid instead of the cyclophosphamide and remaining on the velcade and dex. I have everything crossed as my heart failure is worsening.

One of my cardiologists (I have 3!) infomrmed me that I needed to prepare for end of life and to get my affairs into order. It’s probably one of the hardest conversations I have had to be part of. It was all so surreal. It has however, given me a new sense of determination to survive this rare and difficult disease.

I am so happy to have found this discussion forum and can’t wait to chat more.

Paula

[rayrothParticipant]

I come from “the land down under” and am currently being assessed by the PA Amyloidosis clinic in Brisbane.  After months of biopsies etc they are 95% sure I have Al type and it appears to be in the heart only.  I am waiting for the cardiologist to get me on to his list for a cardiac biopsy.  The processes are exceedingly slow.  I am nervous about what the future holds but at 72 I guess I can face the final result but am not looking forward to getting there.

I am pleased to have found this forum and would appreciate any advice you might offer at my stage.  I did live in Nottingham for several periods and taught at Nottingham University so I have great affection for your country.

[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.

[rayrothParticipant]

Hi

Thanks for sharing. I now have an appointment for a heart biopsy on 21st August.  Unlike others I have not had a major event and have come to this point after significant heart wall thickening and a history of breathlessness.  It seems that it is heart only. I really appreciate the existence of this forum and will post from time to time. Good luck to all of you

[Author]

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