Author Topic: Close - but no cigar!!  (Read 8777 times)

AnnR

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  • Posts: 126
  • Reason for joining: Recently diagnosed with cardiac amyloidosis
  • Diagnosed: April 2017
Re: Close - but no cigar!!
« Reply #15 on: August 28, 2019, 10:00:13 pm »
So pleased that you have had a good response and hope you get a longer remission this time. I could not tolerate Thalidomide as it exacerbated my Menieres.

Chirpster

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  • Posts: 41
  • Reason for joining: AL amyloidosis patient (heart,liver and spleen)
  • Diagnosed: October2017
Re: Close - but no cigar!!
« Reply #16 on: August 30, 2019, 07:29:18 pm »
Thanks Ann. Yes the Thalidomide has affected my hearing in several different ways , I can imagine it would be intolerable with Menieres .

RogerS

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  • Posts: 11
  • Reason for joining: Patient -
  • Diagnosed: December 2016
Re: Close - but no cigar!!
« Reply #17 on: September 12, 2019, 06:05:48 pm »
Chirpster,  you have earned that cigar so hope you enjoy it.

It is really good to hear stories like this as it gives hope to others battling this disease.

I was eventually diagnosed at the end of 2016 after feeling unwell for quite some time and had the usual course of CVD treatment which brought my light chains down from 222 to around 55 but they have gradually crept back up and are now back over 100 and have to admit I am suffering a lot of fatigue so suspect that I am relapsing.
I was back at haematology last week for another blood test and was told to return in 2 weeks so suspect that next week when I return I will find I am booked in for another course of treatment.  Just hope that it slows the further decline in my kidney function!

Roger