Amyloidosis

Cancer
1

I have AL type Amyloidosis and was wondering if anyone out there also suffered from this illness ?

2

Hi- 

I was diaganosed in 2011 with the same thing. It affected my liver, I had chemo and a stem cell transplant.

How are you doing?

3

Hi

My amyloid affects my kidneys and heart. 

I was diagnosed in March 2007. 

I am currently on my 3rd course of chemo over this period. I am going to the NAC in London this week. Have you been there ?

Cheers

Gary. 

4

Lol! No....I live in Canada...smile  my treatment was in Vancouver BC

3 courses  of chemo! boy that's rough! one treatment was hard enough! smile

I get monthly blood tests to keep an eye on my light chain levels...do you have regular blood work too?

 

5

Hi 

Yep have blood tests weekly and my light chains monthly. 

My last two chemos where each four month cycles. This one now may be over 18 months ! Argh !

Long hard slog but hopefully worth it. 

Hope all going ok with you. 

6

So far so good! Although my levels are higher than I had hoped.....I guess if they keep rising, I go on some kind of treatment.....not sure exactly what yet......

when I was in a rough spot during my last treatment, I got a card from a friend- "when you're going thru hell- just keep on going" I think that just about covers it!!! smile

Just hang on and do one day at a time.......... smile

7

Hi Gary. I've been diagnosed with nephrotic syndrome and the specialist today tells me my kidney biopsy shows some amyloid. Early days for me but he has mentioned bone marrow biopsy and the UCL centre. Spent the rest of the day googling rolleyes but staying positive as my kidney function is good at the moment. Worried about what s in the future so Ill be interested in how you're getting on. I don't know about you but I was relatively healthy for years and now feel I don't know what s hit me. Hope you are well. You sound very positive smile

8

Hi Eva

Yep the best way to get through all this us to stay positive. I know this is very difficult at times but necessary. I have AL type Amyloidosis in my heart and kidneys. I'm currently on my Third course of chemo over a seven year period. The chemo stops the progression of the amyloid. My kidney function is very poor and I have had to have a pacemaker inserted. 

Other than that when not on chemo I feel ok. I still play football and try and live a normal life. 

Keep positive. 

Cheers

Gary. 

9

That's good. Life goes on as they say. Just wondering what you thought of the NAC? As I may be going there myself? I live a fair bit away though. Have you started your new chemo yet?

Eva

10

Yep I've been to the NAC many times. It's a very interesting place as they are the specialists in Amyloidosis. 

I'm actually on my second week of my 4th cycle of chemo. 

I've previously had two other types of chemo over 7 years as they change them after each session. 

Cheers

Gary

11

Good luck with the treatment. The NAC website is very positive and I've read it a few times. Couldn't sleep. There's a lot of stuff on the web that's frankly quite disturbing but often seems dated don't you think, as treatments seem to have moved on rapidly. I'm quite frightened at the moment but hoping I'll be sorted out. It's good to see you getting on with it. Keep in touch re progress. smile

All the best

Eva

12

Hi Gary. How are you? Hope you're feeling ok. Hope the treatment s going ok although I know it's early days. Just want to say 'Hang on in there' It will be worth it.

Take care

Eva

13

Hi Eva

Treatment going ok. I'm now on day 16 of 4th cycle. Been admitted to hospital a couple of times with infections but apart from that I seem to be tolerating the chemo better than the previous two. 

Good luck with any treatment you need. 

Any thing you need to know just contact me. 

I have actually written some articles for the NAC magazine. I could send them onto you but I don't gave your email address. 

Cheers

Gary. 

14

Hi Gary, how's it going? I will look at your articles at some point, thanks for that. Trying not to overthink it at the moment. Glad you're tolerating the treatment although the infections are a pain. Stay strong. You can do this. I feel ok at the moment apart from the nephrotic syndrome symptoms.

Keep us posted on progress

All the best

Eva

15

Hi Eva

I am in a similar position as you.  Have recently been diagnosed with amyloidosis after a kidney biopsy.  I have my first appointment at the NAC next Wednesday.  I was feeling very frightened at first but I reckon you just have to look on the bright side as more research is being done.  I watched the videos on the Myeloma uk website which were very imformative.

Best wishes

Rosemary

16

Hi Eva

Got some good news today. After 4 months of being on chemo my light chains have returned to normal levels again so a complete response. 

I have to stay on the chemo for a while tho to see if my kidney function gets better. 

At least can celebrate a little tonight ! 

Cheers

Gary. 

17

Hi Gary

What great news ,it makes me feel hopeful for the future.  You have been through so much.

Enjoy your celebration

Best wishes

Rosemary

18

Wow Gary 😊

How fantastic. It's a lot to go through so getting that news is wonderful. Celebrating with you too 😊

Take care. You give me hope.

Eva

19

Hi Rosemary

I've been referred to NAC but no appointment yet. Have you had a bone marrow biopsy as that has also been discussed. It's a scary time. The website for NAC is very positive though. Do you have nephrotic syndrome?

Take care

Eva

20

Hi Eva

Yes I have nephrotic syndrome - I had a bone marrow biopsy last month but have not yet had results.  I've felt really tired for the last year with swollen ankles and legs - sometimes my face swells too.  I have recently been put on a diuretic which helps a little.  Hopefully the chemo will not have too many bad effects and will get back to normal.

Take care

Rosemary