Kibworth Beauchamp, Leics. LE8 0HX England; email@example.com
1942 / Class of '95 / Type: Lambda Light Chain / Last Update: 12/98
extensive bone involvement, stem cell harvest, but no transplant
Submitted by Jean and her husband, Ken
I attended the IMF Conference in Southampton, UK which was the first time since
my diagnosis in March 1995, that I have had the opportunity to actually talk to
others with the same illness. There was an excellent
presentation from Prof Freda Stevenson, of Southampton hospital on vaccine
therapy which looks very hopeful.
Briefly, (I hope!!) my history is as follows:
I first went to my doctor at the beginning of 1994 with shoulder pain, which
was put down to wear and tear (I'm now 56) but after a further couple of visits,
finally, in the November of 1994, I was sent for X-rays having absolutely no
idea that it could be anything serious, so the diagnosis was a complete shock,
not to mention the wasted time when it could possibly have been just a single
sited tumour. The diagnosis was BJ Myeloma Lambda light chain.
I had a 9 month course (every 3 weeks) of ABC-M during 1995 followed by
Interferon maintenance (luckily the side effects of Interferon lasted one day
with flu-like symptoms). I also had a stem cell harvest that year with a view to
transplant at a later stage.
I had approx 18 months plateau and then around April 1997. I started to get bone
pain again. We considered a PBSCT but I didn't think I was ready mentally for
this course of action and in May I broke my right collar bone just by lifting my
arm. That healed and then in July I broke my left arm after a very heavy
fall. That healed and in September and I had a small stumble and my husband,
Ken, caught me but I broke both my arms and right leg. I have quite a few
lesions caused by the myeloma! I have had both arms and my leg 'fixed' with
metal rods. They were going to put a Hickman line in again and give me high dose
treatment which I think would then have been followed by a transplant but
because I was in such a state they decided to put me on Cyclophosphamide every
week from September 1997 to March 1998.
I go to clinic every 6 weeks but because the Leicester Royal Infirmary is a
teaching hospital, I only get to see my consultant once in every 3 visits. I
can't count the number of other doctors I have seen in between which can get
very frustrating when some of them ask you to briefly explain your illness, yet
again, etc. The care, however, is excellent.
My clinic visits consist of blood tests including Beta2 microglobulin but my
paraprotein doesn't show up significantly in the blood so I have to do regular
24 urine collections and this is the only way they can monitor it for me.
I am now on bisphosphamates (Bonefos - sodium clodronate) 800 mg. orally twice
daily. I am very interested in the Aredia infusions. When I questioned this with
the hospital, I was told that there was very little difference in either method
and it was probably better for me to take it orally as it meant I wouldn't have
the hospital visit for the infusions and obviously it wouldn't be so expensive
to the hospital.
Ken and I are both extremely positive about my illness and determined to beat
it. Ken is an excellent supportive partner/caregiver and keeps be going when
things get tough. We have a 24-year-old son Chris (married to Debbie this year)
and 17-year-old daughter, Lisa, who is in her final year of A levels and is
planning on going to University next year so I so much want to see her achieve
We have decided to bring our wish list forward for obvious reasons and in March
this year we went to Australia to visit my best friend in Adelaide. My
consultant raised her eyebrows a little but agreed. The interesting thing is
that I asked if I could stop the treatment whilst I was in Australia so I could
enjoy it better (chemo always makes be ill whatever anti sickness medication
they give me) and they agreed and said we will start up again when you return.
On my return in late April, the disease appeared to have
stablised and I have not been back on treatment since. So I wonder whether
treatment could have been stopped sooner!!
Pat, I wish I had subscribed to this list sooner. We were in Melbourne in April
and I would have loved to meet you. You are a lovely person and bring such
positive energy to this list. We are planning on visiting
Oz again next year, so who knows?
Whilst in Australia Ken and Lisa scuba-dived off the Gt Barrier Reef in
Queensland and had an amazing experience. I couldn't do it at the time because
of my healing broken limbs but you have assured me that this is possible and I
shall certainly 'be going for it' when I next get the opportunity. Yes, you are
weightless in water and I have hydrotherapy to thank for helping me heal faster.
Since my return from Australia I have gone from strength to strength and since
April have been out every day walking my two dogs (Border Collie Murphy and
Collie cross spaniel Becky) with a group of friends I have made through dog
walking - wonderful people.
I also visit Matthew Manning in Suffolk once a month. Matthew is a healer and is
the most tested healer having been researched thoroughly in American
Laboratories and here. He has been known to influence cancer cells in lab tests.
He never claims he can cure you but has certainly had some good results with
many people. Whether he is actually helping me, I don't know but I enjoy the
half hour immensely and come away floating on clouds. I personally feel he is
benefiting me and I think that is all that matters.
I also go to Yoga and relaxation every fortnight and this is very beneficial,
especially the relaxation. Pat who gives the sessions has produced a tape
containing a relaxation and visualisation session and this helps so much if I
can't get to sleep at night. She has the most beautiful Irish voice and
sometimes I have fallen asleep before the end of the tape. I can highly
recommend both these therapies.
Sorry for the length of this but I think I qualify for the survivors page and
hope my contribution helps others in some way. Future missives will be shorter.
Wishing you all a Very Merry Christmas and a healthy and positive New Year.
Lots of love and healing thoughts going your way