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Hi Lynne,
I am sorry you have not had a reply. Where indeed do you start? Whilst I cannot advise you about your husbands condition I would just like to say that I too am going down the AMY path with LCDD- Light Chain Deposition Disease My kidneys are affected & I feel lucky not to have any other organ involvement yet. I am sorry they have found Amyloid Deposits in so many of his organs. I too have now attended the Royal Free for 2 appts six months apart to have SAP Scans, ECGs, walking test, etc. etc. . He must be feeling very poorly, and I wonder why on earth this hasn’t been picked up before now. Whilst Myeloma is very rare, Amyloidosis & LCDD are even rarer- yet all come under the same umbrella. I have just finished my 6th cycle of Velcade, Cyclo & Dex. Yes its been tough but I have got through it, and am now awaiting discussions for a SCT. Have the Royal Free discussed an SCT with you both after the chemo treatment?
The Royal Free are terribly efficient. I feel very lucky to be under their care, and it gives me confidence for the future as should Amyloids deposit in my organs- I am under their radar as indeed is your hubby. I sincerely hope you also have a proficient local consultant.
Sadly I have yet to actually connect with anyone else who has LCDD. But as it all comes under the same umbrella I read and educate myself as much as possible in all areas- LCDD, Amy, Myeloma. I have watched some extremely informative videos on the Myeloma channel. Afterall I may develop any of these in addition to LCDD. I hope this helps, It is a very difficult/frustrating journey- accepting the diagnosis, coping with the treatment BUT you will eventually reach a calmer place. Another Myeloma buddy advised me to break life down into chunks. I find this helps, I no longer feel able to plan ahead, but try and deal with how I feel on a morning/afternoon basis. I guess I now live in the present and take pleasure from the small things in life……..
All the very best with your husbands treatment, Sharron
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