Author Topic: Update  (Read 352 times)


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  • Posts: 14
  • Reason for joining: Newly diagnosed, al amyloidosis, kidneys, liver, spleen, early heart, autonomic neuropathy
  • Diagnosed: 23/3/21
« on: October 02, 2021, 10:20:39 am »
Hello all
I haven’t posted for quite a long while. I was discharged from Kings in early August after four months most of it spent on an isolation ward and found out through reading my discharge summary that in late July after a myeloma body scan realised I had Mm as well with three lytic lesions in my spine. What a way to find out!  I can see that not many people have been posting and if I am honest because of the extent of disease I have and my traumatic experience at Kings I was scared to.
I am stuck bedridden in one room and awaiting rehousing. Mentally it has been tough as I have not been outside in the sunshine all year aside from ambulance transfers. Before this disease I had a life and now I don’t. I had the joy of the racket that are carers. It is the autonomic neuropathy that has been the disabling factor ie tachycardias and postural hypotension. Luckily despite the multiple cardiac arrhythmias i had the MRI suggested a diastolic filling defect but early heart involvement and the arrthymias have stopped mostly with only a few on a velcade.
I have the genetic testing and it is T 11, 14 which is one of the worst prognostic indicators for amyloid, usually because of A predisposition with this genetic type to heart involvement. I have been reading a lot of the American research.
Because of my very sensitive system I did not do well on high doses of steroids or Cyclo which was accelerating renal failure. Ihave been off cyclo from about the idle of cycle 2 and it was me who had to make that happen. The docs did not want to at the time. So after starting on Cybord I am now Velcade reduced dose, Dara and Dexamethasone 8 mg very reduced dose. The steroids sent me every week into a spiral of black depression and tears and suicidal thoughts. I simply couldn’t tolerate them. However, I could see after starting off with lambda light chains of 758, they halved every cycle at and at the end of cycle 1 on Dara velcade and dexa are now within normal range albeit at the top end which is a very good kidneys have been in failure on the numbers for five or,six,weeks now but not clinically. I am not swollen with fluid which is good but am long past failure thresholds with egfr now falling by 1 per cent a week at 10 and creatinine of 384. The rise in creatinine was 50 a week when I had intractable diarrhoea from the velcade but is now between 14 to 18 per week. No western medicines were able to stop the diarrhoea and had many adverse effects on the kidneys and phosphate but I used Chinese herbs finally after much prevaricating and it stopped on day 1. My desperation exceeded the powerful messages we get about alternative treatments during chemo ie don’t do it.
Physio at home was pathetic. Because of a lack of physios it  started three and a half weeks late and lasted for two weeks with patchy attendance and because I can’t be reenabled or stand and walk, it stopped. So a very difficult and traumatic journey all in all. But I am alive and my lambda light chains are within the top range of normal.  So reason for hope that at some point my function will improve.