DATE DIAGNOSED: August 2001
TYPE OF AMYLOIDOSIS: Primary AL
amyloidosis, mainly kidney and spleen
WHERE TREATED: Leeds, England
Diagnosis: I had been feeling tired
in 2000 and my doctor found that I had an underactive thyroid which
I felt, with medication, would put me back on my normal energy
levels, no worries. A year later I decided to pay to have a BUPA
medical check as I felt I was being paranoid about tiredness and,
perhaps it was my age of 50 years. It was discovered that I was B12
deficient (pernicious anaemia) which again explain my tiredness and
could easily be corrected with B12 injections. The other thing that
came out of the check, which I foolishly did not worry about, was
that I had protein in my urine. This had been pointed out to me in
1999 by a nurse and I brushed it aside and I told her not to worry
as I had experienced that while I was pregnant. My GP referred me to
a kidney specialist on receiving my health check report and a kidney
biopsy confirmed that I had amyloidosis.
Treatment: I was immediately
referred to the Amyloidosis Centre at the Royal Free in London. The
seriousness of the disease had not dawned on me. I did not feel
unwell and the reality of the disease did take a long time to sink
in. I was grateful for the skill of the staff at the Royal Free.
They were compassionate and I felt I could make contact at any time
if I had questions. I hit the internet and found the amy. listserv
for which I am eternally grateful and for the people, mainly from
America, who answered so many of my questions. The treatment options
for me were VAD chemo or a SCT. VAD was recommended and the
haemotology dept. in Leeds treated and supported me through 4
courses. My FLC reduced by over half so it was considered
successful.
At the end of 2003 my FLC were on the rise
again so I had to face something that I dreaded having to do - the
SCT. I had read an article in a magazine a few years previously as a
treatment for breast cancer and it haunted me. Also, there are no
centres of excellence for treating amy. by SCT. so treatment
mortality could be high, according to all the articles that I read.
I had my stem cells harvested in Jan 2004
but buried my head in the sand until Sept. as my FLC were
fluctuating. With all my reading, the name Ray Comenzo kept cropping
up. My consultant in Leeds said that the Ray Comenzo protocol would
be followed and that he was a friend and colleague of his. My
confidence in having the SCT done in Leeds grew. As I went through
the SCT I was attended by another doctor who had worked with Comenzo
in Boston so yet another confidence boost. I was given a lower dose
of melphalan (140) as my kidneys had deteriorated with all my
dithering.
Outcome: My FLC are in the normal
range. It is considered a 'complete response' My kidneys function at
a third capacity which is o.k. I keep salt intake down and watch my
potassium levels. I have very little fluid retention. I am anaemic
and have EPO injections but I am able to live life almost to the
full. Life is at a slower pace anyway since I was retired on health
grounds.
Gratitude: To the team at the
Amyloidosis Centre, the staff at the Haemotology dept. in Leeds, Ray
Comenzo, my wonderful husband who looked after me so caringly, my 2
children who provided me with support and humour, my brother who
came over from Spain to add family support, my caring friends and
those of you in far away places on that supportive amy. listserv. I
am also extremely thankful that we have a National Health service so
that we do not have to fight with insurance companies to get
treatment!
Contact: wendydpike@hotmail.com