Hi Rosemary, lovely to hear from you and hoping the CVD has done the trick. My biggest problem at the moment is my kidneys and not the Amy although the light chains are rising slowly again. General concern us of opinion is that this may be due to the kidney problems and not necessarily the Amy. Will wait and see. I dialyse 3 times a week but my…[Read more]

As your sister is over 70 have you tries Age UK? I took out a policy with them to cover a cruise in June and have just had to cancel as my kidneys decided they have had enough and I had to start dialysis on Christmas Eve. The claims lady has been terrific and the cover offered is comprehensive. Worth a try?

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…[Read more]

I had to look up LCDD and now I can see the worries about your kidneys. But you know renal failure will not kill you, that’s what dialysis is for! Not the most pleasant of paths but much much better than the alternative.
I found I was much more breathless while on VCD chemo but that has got considerably better until a few weeks ago. I have to have…[Read more]

Hi Sharon,
Still no further along dialysis route but SCT is definitely out of the equation. Added to everything else I seem to have had a heart attack at some time ?? How do you have a heart attack and not know it for heavens sake? It was discovered following an ECG taken at GP surgery on a yearly MOT check up. Now I am having cardiac…[Read more]

Hi Sharon,
Sorry no one has come back to you before now. I don’t think there are too many people on here with Amy. I was diagnosed 2 years ago now with kidney, spleen and nerve involvement and have had VCD for 8 cycles. My Amy is stabilised at the moment but the kidney damage appears to be getting worse. I am due to have counselling regarding…[Read more]

Oh Sharron, it’s like a window on my life! You are a bit ahead of me as I have an initial consult with the transplant team on 23rd September after our return from holiday. Until then I am putting the whole thing to the back of my mind and concentrating on the holiday. I feel OK except like you I am unable to do all the things I used to do before…[Read more]

Hi Joyce, so sorry to hear about the loss of your husband. It must be hard for you especially as you are fighting such a tough disease. I have AL Amy but no Myeloma and was treated with 8 cycles of VCD finishing last June. Unfortunately my protein output is now very high and my eGFR is falling. I will be seeing the transplant team on 23 September…[Read more]

Thank you John and Rebecca . I think I was panicking about the whole thing when I posted but have come to terms with it more now, especially after ‘talking’to a fellow sufferer who had SCT at about the same age and with the same Amy involvement and at the same hospital. I see the consultant next week and will have more news then. Like you Rebecca…[Read more]

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…[Read more]

Hi Helen,
It’s such a nuisance isn’t it? But to be honest I have been very lucky and the Amy is labelled ‘stable’ at the moment. The kidneys seem to be taking a bit of a bashing, but no treatment on the cards as yet so fingers crossed.
Although I haven’t posted for ages I have been following everyone’s journey and laughed and cried with the rest…[Read more]

Hi Helen,
Glad to hear that things went well for you. I get a 'mark' on my stomach after the injections, one side more than the other for some reason, and so make sure I alternate sides so that it doesn't get too bad. The skin does get very dry there after a while so plenty of moisturiser is called for.
As for the Day Clinic – well I have the…[Read more]

Hi Helen, I have been on VCD since Sept. initial dose of twice weekly had to be reduced to once a week x 4weks then a week off. I have found that after treatment on Tues, Weds and Thurs are not so bad and those are the days I plan to do things. Fri is a sit and read a book day and some Sats are the same. My main problems are weakness, shaking and…[Read more]

Hi Nicki,
I am so very sorry for your loss. Your brother was far too young and I hope you get some answers as to why he died so suddenly. I have Amyloidosis but fortunately with no cardiac involvement. I wonder if the amyloid deposits on his heart had damaged it to such an extent that it caused a massive heart attack? The amyloids take a…[Read more]

Oh sorry Eve. I could have sworn I read somewhere that you were Yorkshire. Nevertheless, I do like your straight talking and common sense. I have ended up in the midlands via Germany and Africa so I have a mixed up accent too. Can't help it when you travel around a bit can you? The dust is settling nicely >:-) and I see another company on…[Read more]

Thank you everyone for your encouraging messages.

Hi Mavis…I have AL Amyloidosis, similar to mm but without any bone problems and therefore no pain for which I am eternally grateful. It affects the organs, in my case kidneys, liver and spleen, but like mm is very individual and varies in each person. The treatment is down the same route as mm…[Read more]