[jellybabyjanParticipant]

HI

I'm mew to the site. My husband was diagnosed in May with this horrible disease. Has had many up's and down's since then and is about to start his 6th cycle of chemo. He's on CVD regime and is on the REVEAL trial. He has stage 3 cardiac amyloidosis and stage 4 CKD, peripheral nurophaphy and it's attacked his saliva glands. Not very good. He will be going on Peritoneal Dialysis soon as his kidneys are working at under 15%. Because of this he is soooooo tired every day. He can't function and has no energy to do anything. It's really getting him down and it upsets me to see him like this. Also he's extremely cold 24/7 and can never seem to get warm, even when the heating is on full blast. His FLC have come down to 55 (started at 240) so at least the chemo is working. We've been told that there's no chance of a transplant and he has more than 2 organs with severe damage. He gets out of breath very easy and can only exert himself slightly. He's only 48 and I want many, many years with him!

My question is: what's the life expectancy when you have all these problems? We try to stay positive but it's hard when you don't know the outcome and your living on a knife edge!
I'd love to hear your thoughts and suggestions. Thanks

Jan

[eveParticipant]

Hi Jan

Welcome,but sorry you have had to join the roller coaster:-)

It is such a shock when this first starts,and a big learning curve,Ellen on the free number can help you with any questions you have,as your husband has two diseases it becomes more complicated ,but saying that trials do open medication that some times is not available

Intense cold comes from within the body,we have an electric blanket with controls either side,so my husband can have his on all night . Hot drinks like oxo and clear soups seem to warm my husband up. Do keep a careful eye on his BP and temperature . It is a big learning curve,

As for life expectancy ,who can say,these diseases effect everyone differently,!!

After 2 3/4 years,I have learn,t not to look to far into the future,my motto is why worry about tomorrow and spoil today:-S
It has held me together,plus given me an inner peace,you must find your contentment,because it will help you in the future..

My best wishes to you Jan. Eve

[tomParticipant]

Morning Jan and Mike

Sorry you have to join us but a warm welcome none the less.

as Eve says no one can tell how long we will live with this darn MM, Eve is the posh one with a Double side control on an "Electric" Blanket as for me well I know about cold since my SCT and I have down the side of my chair a snuggle blanket and in bed No electric blanket for me I get a single duvet thrown on top and am as warm as toast.

Good Luck to you both on the road to remission

Tom Onwards and Upwards x

[jellybabyjanParticipant]

Hi Tom

He is ok in bed cause he has me to cuddle!!!! 😉 I bought some long sleeve thermals and some long johns yesterday and they seem to have done the trick today. 🙂

Jan

[jellybabyjanParticipant]

Hi Eve

Hot drinks are a real problem for Mike as he has a fluid restriction of 1.5 litres. He finds this very challenging because of his dry mouth. He relies on chewing gum and sweets. I know I shouldn't try to look to far ahead but it scares the bloody crap out of me and I'm normally a planner!! As I said I want to celebrate our 30th, 40th and 50th wedding anniversary and grow old together, this is what I find difficult.

Sorry but need somewhere to get it off my chest 🙁

Jan x

[eveParticipant]

Hi Jan

do not apologise, we have all been were you are standing right now, and we have all wanted to know why to lots of questions, and at times want to rant and rave and get things off are chest, this is all normal.

I still would recommend you ring Ellen or Maggi on the free number, they are very easy to talk to, and can help you with questions you can ask when you see consultant, plus send you information which will help you.

This is a big learning curve for you, as time progresses you will be come the expert on your husband, learn all you can.
As for are lovely Tom, who is a bit of a star, keeps us all laughing, I am beging to think he has found a miracle cure!!! Vodka, plus his attertude is on wards and up wards , and he has been doing it for years, no harm in taking a leaf from his book!!!!
you will find people on here who can help you, cheer you up, and give you hope. EVE

[jellybabyjanParticipant]

Hi Eve

I did ask lots of questions when I went up with Mike to the hosp. Now he goes on his own as I'm back at work, I give him a list of questions to ask and I expect a full list of answers in return!!! He does his best bless him. Each week we have another shed load to ask as different things happen. I have no problem with this as I need to know and understand the enemy. They are really good and very honest with us. Sometimes this is hard to take though. I thought I knew it all and then something else happens and throws a spanner in the works.
Thanks for your words.

Jan x

[tomParticipant]

Hi Jan and Mike

You take no notice of Eve am sure its more than the Vodka that has helped me (but dont tell the young bride lol) the Vodka is good for me and am sure its my headset that helps also as am sure we can talk and think ourselfs better as well as our Meds doing their bit too.

and this site/forum is the place to rant rave cry and laugh throughout the road to remission its up hill and down dale as am sure you are finding that out seems one forward and two back at time but it is a doable am pleased to say.

Stay well and dont forget to leave time for yourself to rest/pamper time

Love Tom Onwards and Upwards x

[meganjaneParticipant]

Hi Jan,

It is so much to try and get your head round, isn't it? My husband Phil was diagnosed in May 2012 at the age of 43. He was part of the PADIMAC trial so had six cycles of dex-dox-velcade and then went on to have a SCT in December 2012. Soon after the initial diagnosis Phil had both femurs pinned due to the risk of fractures from the lytic lesions. Phil also had a stay in hospital with pneumonia.

Many people refer to the MM journey as a roller coaster and I think that describes it perfectly. None of us can know what is round the corner so they best way to cope is to live day by day while ensuring you gain as much knowledge as you can. I know the living one day at a time is difficult as my mind constantly wanders to future and many what if questions but I have come to realise that there is enough to worry about that is real without adding future worries to the equation. I have found counselling has helped me work through my emotions.

Phil now attends most of his appointments on his own as I work but I also send a list of questions each time, we are always learning new things. The good news is there is a lot of new treatment in the pipeline so there is hope.

Phil is doing well now, he has peripheral neuropathy that won't go away and pain from the bone damage but the difference between now and even a year ago is amazing, I hope things improve soon for Mike, it is good news that his FLC numbers have dropped 🙂

Megan

[GillpennParticipant]

Hi, I have amyloidosis affecting my kidneys and heart, though not to the degree that your husband is dealing with.
I have found the American amyloidosis site very informative. It may have some answers for you too.
Gill xo

[GillpennParticipant]

Hi, I have amyloidosis affecting my kidneys and heart, though not to the degree that your husband is dealing with.
I have found the American amyloidosis site very informative. It may have some answers for you too.
Gill xo

[jellybabyjanParticipant]

Hi Megan

Glad to hear that Phil is much better. I know Mike is too because I saw him at his worse in May and he was very close to dying! To see him now is remarkable. We are thankful for this. I'm trying to live one day at a time but I guess it's gonna take time to be like that. It seems something different happens every week that sets him back. At the moment it's being sick nearly every day and postural hypertension. He's not had any chemo or steroids for 3 weeks now and we think that could be causing the sickness. Hopefully get some answers on Thurs.

Everybody is so nice and helpful. I feel better when I hear of others with the same issues, (wish we didn't!!) I'm hoping Mike can have a SCT but at the beginning it was a no no. Not sure if his heart can take it. I believe this is the way forward for us.

Jan

[jellybabyjanParticipant]

Hi Gill

Yes I'm a member of Inspire. Is that the one you mean? Very helpful but I wanted a UK based forum as well.

Jan

[GillpennParticipant]

Hi Jan,

I was referring to the amyloidosis support group at http://www.amyloidosisonline.com.
Inspire is new to me.
A UK based forum is good too. There is one on the uk amyloidosis site but is not particularly active.
Where in the uk are you?

Gill

[jellybabyjanParticipant]

Hi Gill

No I've not been on that one. I will look it up, thanks 🙂 I'm on the outskirts of London and my husband travels to The Royal Free Hospital in London each week for his chemo.

Jan x

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