Melbourne, Australia; firstname.lastname@example.org
5-16-1957 / Class of '96 / Type: Kappa
light chain / Bone involvement, PSCT, mini-allo / Died: 5-20-03
My name is Pat and I am 39 years old. My home is in Melbourne, Australia. I
was diagnosed with Multiple Myeloma Kappa Light Chain in September of 1996. I am
a qualified dental nurse and I worked in a one man practice for nearly ten
years. I was responsible for the developing of the x-rays, the mixing of the
photographic chemicals to develop the x-rays and mixing amalgam for fillings -
which of course contain mercury! Put all that together - as well as an ancient
x-ray machine - and I think a lethal cocktail was being mixed! Safety measures
weren't quite as stringent twenty years ago as they are now.
I then left the practice to have my two wonderful children. I have two girls
aged twelve and eight. After a few years, I went back to work as a dental
receptionist for a further six years part time. I'm now a stay at home (is there
such a thing?) mum.
My story begins in May of 1996. I began having vague pains in my lower back,
which, over the next three months gradually became worse. I was seeing a
chiropractor - who wasn't doing anything to relieve my discomfort. I was having
to hold my back when I sneezed, coughed or sat down. I then developed something
akin to the flu which blossomed beautifully, with the added joy of an acute ear
infection! I wasn't a very happy person. Two rounds of antibiotics later, I
managed to shake it. Meanwhile, the pain in my back was getting worse. I wasn't
able to dress myself!!!
Near the end of August I collapsed with such severe pain in my back, I passed
out. I spent the next week like an invalid in bed at home, then collapsed again
for the second time. This time we called an ambulance and went to hospital.
After being in hospital for almost a week - after being admitted as merely
'back pain' - I began to feel most unwell. I began vomiting and losing weight.
My colour wasn't the best either. After copious blood tests, it was revealed I
had MM. A bone marrow and bone biopsy were done to confirm the diagnosis. Full
body x-rays followed. Once diagnosis had been confirmed, I was started on I.V.
fluids to reverse the hypercalcemia, which had become an obvious problem.
After a discussion with the oncologist, a plan put into action. As you can
imagine, we were all in a state of shock! I was to start a high dose
chemotherapy regime coupled with Prednisolone. The following day I was wheeled
around to the day oncology ward at the hospital, bed and all, as I was unable to
move under my own steam.
Five hours later I was wheeled back to my ward, feeling surprisingly good!
Then began the long process of getting my strength and mobility back. It was
three and a half weeks before I was able to move enough to be able to have a
shower - in a commode chair - and five weeks before I was able to go home. The
doctors were most anxious to get me up and moving about again as quickly as they
could. It was a supreme effort to walk to the door of my two bed ward!!! All of
about ten feet!!!
The chemo regime we opted for was PCAB (Prednisolone Cyclophosphamide
Adriamycin & BCNU) every four weeks to be administered in the day oncology
unit at the hospital. I was to have six treatments in all. This worked fine and
we only had to put treatment off once because my counts were not high enough. I
was able to have my family or friends with me while I was having the chemo, as
well as being able to take videos or music with me - anything to keep the
atmosphere pleasant and relaxing.
The regular monthly blood tests showed a dramatic response over the six
months of treatment to the chemotherapy. All the counts concerned came back down
to within the 'normal' range. I don't have the exact figures at hand to quote,
but the doctor said my protein level had plateaued out at 5g/L at the completion
of the chemo. Not bad as the starting figure was 64g/L. I feel good and have
very little bone pain now. It has been revealed by my skeletal surveys that I
had compression fractures in T10-12 and L4-5. No wonder I had such terrific back
April 1997 I had high dose Cyclophosphamide in April '97 to reduce the
Myeloma activity more and mobilise my stem cells for collection. After this
chemotherapy, to boost the production of my white cells, I began G-CSF
injections. Once the injections had done their job, I had my stem cells
harvested and stored for the transplant. I actually had this process done a
second time to store some more - for a rainy day! After this chemotherapy my
protein level went down further to 2g/L. Better news!! I went in to hospital on
the 6th of June for my stem cell transplant. I had great hopes that this
treatment would put me into remission for a long time, and so be able to be
around for when the cure is found for this awful disease!
I wish everyone who has this disease, a long remission and good health while
they are waiting for the cure. It doesn't matter which treatment plan you opt
for, just so long as it is the right one for you. There are many treatment plans
available, but remember, the disease is in YOUR body and ultimately the choice
of treatment is up to YOU! Do your homework, listen to your doctors and decide
which treatment YOU want. YOU must be comfortable with the treatment plan set
out for you.
July 1998 In July/August/September of 1998, I managed to get hold of
some sort of nasty virus which refused to go away. I had three lots of really
strong antibiotics which finally gave it the push. I also had numerous chest
x-rays as I was feeling very wheezy. We later determined that I was now an
asthmatic, courtesy of the bug I had. I’d never had asthma in my life before!
Once I got on to the inhaler, I felt a lot better and my wheezes disappeared
over time. I still need it now from time to time. Once I had recovered from this
virus, my November ‘98 test results showed a small increase in my protein level.
Then again in December, another small increase in protein level. After
discussions with Tony (transplant doctor), we decided to wait until January to
see if indeed my counts were truly on the rise. They were, so we decided on a
game plan. I had seen an article on alternate day 50mgs Prednisolone from the
ASH Conference in America. I showed it to Tony and he’d already read of this
treatment. We decided to give it a go and see what happened. It worked. It more
than halved my protein level and put me on a plateau for four months. By this
time it was July and we then thought it might be good to take me off Pred and
see what happens.
Bad move! When I went back six weeks later, my protein level had risen
dramatically, so it was back on the Pred for me! I now know that it is NOT a
good idea to stop Pred cold turkey. You have to stop this drug slowly and let
your system get used to not having it. Once again my protein level reduced
wonderfully. Then in December of ’99, I opted to go on to Thalidomide 200mgs per
October 1999 Chris and I attended the IMF seminar in Sydney in October
’99. After the seminar we toured the city from one end to the other – mostly on
foot. We walked miles! On our return home I began complaining of pain in my
hips, particularly the right one. I had a bone density scan done in December
’99, and alarmingly it showed that I had lost a lot of bone density in my hips!!
I was in very real danger of breaking either, or both, my hips. After a lot of
asking and pleading, I eventually got a CT scan done. This revealed that I had
indeed lost a lot of bone. Action stations!! I phoned my doc at the hospital and
told him of my bone density report. After that, I think I had all my doctors
talking to one another! They decided on putting me on some tablets which would
help my poor old bones gather some strength. I’ve been taking these pills
(1200mg Calcium daily and 0.25mcg Rocaltrol 3xday) religiously now for about a
month. The pain in my hips has gone and I feel really good. Let’s hope it’s the
pills helping things that has caused the pain to go. I had been having Aredia
every four weeks up until December ‘99, but now I’m having it every three weeks.
Hopefully this will help my bones as well.
January 31, 2000 It’s now been two and a half years since my
autologous transplant (6/6/97). Where did all that time go? Perhaps I should
enlarge on that experience for you.
First I had a lot of tests done to check that my body could withstand the
rigours of the transplant procedure. These included checking my heart and lung
function. I had many blood tests and a bone marrow biopsy, to determine where
the disease was at pre-transplant, so that comparisons could be drawn
post-transplant. Then it was time to have a catheter placed so that drugs could
be introduced, and blood taken at a moment’s notice if the need arose. The
catheter was a Hickman catheter and I wouldn’t have known it was there. A
catheter is an essential part of any transplant as the patient is usually hooked
up to a few pumps for the delivery of antibiotics, blood, TPN etc, and it would
be extremely difficult to have IVs in veins for all of these!!
Then came the high dose Cyclophosphamide (Cytoxan) to mobilise all the cells
into action. After this I had G-CSF injections to over stimulate the production
of cells, so there would be ample to collect for transplant.
Then it was on to the aphaeresis machine to harvest my stem cells. This was a
painless procedure where I was hooked up to a machine which looked like a large
washing machine! I had an IV hooked up into one arm, and as I had a Hickman
catheter, the other end of the line was hooked up to this, thus completing the
circle. Once the machine began doing it’s work, my blood was sucked out of my
arm, the cells spun off in the machine and stored, then my blood – minus the
stem cells - returned to me via the catheter. I was hooked up to this on three
occasions and harvested enough cells for two transplants. Tip… Take a good video
to watch to make the time pass!!
Once this was done we were set to move on to the transplant. Protocols vary
from country to country, hospital to hospital. The protocol that my hospital
used was high dose Busulfan tablets and then high dose IV Melphalan. I’m not
sure of the dose of the Busulfan, but the Melphalan was 200mgs per m2. I was
allowed to go home after these treatments were given, and was to return to the
hospital regularly until such time that my counts were too low to safely stay at
home. This turned out to be one week from the day I received the Melphalan -
just as my primary nurse predicted!
Once in hospital, I had blood tests every morning to monitor what my counts
were doing. Once my counts bottomed out, I had to receive platelet and blood
transfusions. Some patients have trouble with mouth sores after high dose
Melphalan, but as I sucked on ice all through the infusion, I never had any
mouth sores to contend with. My GI tract felt the after effects of the chemo
though, because I was unable to eat or drink sufficient to keep me well. I was
hooked up to a drip which would feed me. This is called TPN.
My primary nurse was really interested in aromatherapy and visualisation, so
I had many enjoyable sessions with her, either while I was in the bath or in my
room. This helped me immensely in coping with all that was happening. She also
did a pretty good foot massage!
After about seven to ten days my blood counts were on the rise again, and I
began to feel better and better. The promise of home was put in front of me, but
horror of horrors, I picked up an infection in my catheter. That grounded me for
another week! I was put on Amphotericin (or as the docs referred to it -
Amphoterrible, because it can have some awful side effects) for five days.
Fortunately the infection cleared up and I was allowed to go home, just one day
short of three weeks. I was never so glad to see my house as I was that day!
I had to return to the hospital on a regular basis for blood tests and to see
the dietician. I sailed along very nicely and had no complications at all. A BMB
done three months after the transplant, showed no sign of myeloma cells, and my
24 hour urine sample was clear of Bence Jones protein. I was officially in
remission. This lasted for a few months, then a small, but once again
detectable, trace of myeloma was found in the blood. My protein level was 3 g/L,
but stayed steady there and showed no signs of moving.
My Thalidomide History I began taking Thalidomide in December 1999. My
protein level in both December '99 and January 2000 was 20g/L. After taking
Thalidomide for two months, my paraprotein level had dropped to 4g/L. To say
that we were surprised and elated, would be an understatement! This was truly
amazing. One more month, and again we saw the number halve to 2g/L. More
celebrations! No-one is 100% certain about the mechanism this drug is using to
halt the process of cell proliferation in Myeloma, but something very positive
is at work here! I'm still having Aredia every four weeks. That's something I
would never miss!
For the next three months, my protein level stayed static at 2g/L. It
appeared I had reached a plateau. However, at my clinic visit in June 2000, I
was told the paraprotein level in my blood was too low to quantify! Whoa!! More
wonderful news. The same result was given for July as well, so I was given a
small reprieve, instead of going to the clinic in one month's time, I could
leave it for two. That meant I didn't have to front up to the hospital until
September. Bliss! Two whole months of no hospital or doctor visits!! Yippee!!!
September, 2000 I have now been on Thalidomide for nine months, and
this horror drug of the fifties and sixties has proven a wonder drug for me.
My September clinic visit was this week and once again we were surprised, but
very pleased and thankful, that no myeloma protein was able to be detected!
Whew........a sigh of relief. All my other counts are within the normal ranges
and I'm feeling pretty darn good! Once again I've been given a two month
reprieve and my next appointment is in November. Who would have thought it
possible that Thalidomide could do such a wonderful thing?!
November 2000 and January 2001 I've now had two more clinic visits,
November 2000 and January 2001, and thankfully the results are still the same as
before. The Myeloma protein is too low to detect and all other counts are in the
'normal' range. I do have some peripheral neuropathy in my fingers and toes from
taking Thalidomide for as long as I have, but given the fantastic results I've
gained from taking it, I'm really reluctant to stop taking it.
In December I had a nerve conduction test to determine if my nerves have been
affected by the Thalidomide; I really didn't need one of these tests to confirm
whether I did or not - I knew I did!! In an effort to try and reduce the
symptoms of the PN, I reduced the dose of Thal from 200mgs down to 100mgs, with
my doctor's blessing.
At my next clinic visit in March, we'll see if this lower dose is still
holding the Myeloma down at an undetectable level. I think it is, but the tests
will soon show if I'm right!
March 2001 Clinic visit was yesterday and all is still well. The
paraprotein is still undetectable and all other counts remain in the normal
ranges. My B2M was the only surprise - a good surprise - which dropped from 2.6
to 1.5. It hasn't been this low - and in the normal range - for a couple of
years! All in all, a very pleasant clinic visit. We are going to leave things as
they are - all meds and doses the same - and I'll go back for my next clinic
visit in May. I'm so very pleased that this easy form of treatment has worked so
very well for me.
May 2001 Once again, thankfully, my paraprotein level is non-existent
and all other counts are within normal limits. A recent bone density scan has
also shown that the density of my spine is now in the lower end of 'normal' for
my age and height! Sadly my poor old hips are still lagging behind, but they
have improved slightly from what they were.
June 2001 I have just returned from a holiday to the centre of
Australia and walked miles out in the outback. I'm so lucky to have been able to
go and take part in all the wonderful things we did. I walked everywhere we had
the chance to. I drew the line at Uluru though! That was a little beyond me!
This would have been the last thing I thought I'd be doing way back in '96! It
just goes to show - NEVER give up!
July 2001 Clinic visit this month again showed that I was lucky enough
to still be in complete remission, with no signs of Myeloma showing up anywhere.
I have been truly lucky with Thalidomide. My clinic visits have now been
stretched out to two months!! I have had monthly appointments for the last three
years!! This is great!!!
September 2001 Still sounding the 'all clear' where Myeloma is
concerned. All counts in the normal range - white cells a little low, but not
dangerously so, all the while I've been on Thal, but this is a usual side effect
of Thal and one to be expected.
October 2001 I managed to get my dose of Thal reduced again to 50mgs
from 100mgs. It's been difficult to obtain here in Victoria, but Andrew seems to
have done it. I hope this will still hold the Myeloma at bay and also reduce
some of the PN I now have. Fingers crossed.
November 2001 Clinic visit was disappointing today as we learned that
there is now a trace of myeloma protein visible, where there was none before.
The reading was still too low to put a figure to, but the reading was measured
at 'less than 2g/L'. It seems that the 50mgs dose was not enough. After a
discussion with the doc (my usual doc Andrew was on holiday) we decided to put
the dose back up to 100mgs for a month to see what happens. I may have done my
dash with Thal now. I hope not.
December 2001 It seems that putting the dose back up to 100mgs didn't
do anything. My protein level rose to 4g/L. Still low, but obviously on the way
up. After another discussion, this time with Andrew, we decided that we'd give
it another month to see what happens. Andrew left it to me to decide what dose
of Thalidomide to take. I decided to raise the dose to 150mgs, so with fingers
crossed and bated breath, I wait for January's appointment.
I'm not all that confident that Thalidomide on it's own will still work for
me now. If this proves correct, the plan is to add Dexamethasone (Dex) to the
Thal. When these two drugs are used together the response rate is very
impressive, so I'm hoping the same will happen for me. Of course, if the higher
dose of Thal kicks in, I won't have to worry.
I have been extremely lucky to have Thalidomide work so well for so long for
me. The median time to relapse, when taking Thal on it's own, is about eight
months, but I have been taking it for two years! All the drugs we take have a
'use by' date attached to them, because the Myeloma cells eventually become
resistant to the treatment being given, so a switch to another form of treatment
is required. Crafty little devils.
Myeloma is definitely not a 'one size fits all' disease. Everyone responds to
treatments differently, and even the same type of Myeloma can be a totally
different disease from person to person.
January 2002 As I had suspected, but hoped was not right, my
paraprotein had risen again. Now it was 9g/L - up from 4g/L in December. So, we
have to do something more now because it was obvious that Thalidomide on it's
own was no longer going to hold my Myeloma in check. Damn!
Okay, so what will we do? Andrew ran through some options for me to consider,
but I decided I still wanted to try adding Dex to the Thal for a month to see
what happened. There are all sorts of ways and combinations to take these drugs,
but the one we decided on for me to try was to keep taking the 100mgs of
Thalidomide each night as I had been doing, and take 40mgs of Dexamethasone
(Dex) one day each week.
I am very interested in trying a newer drug combination called BLT-D which
combines the use of Clarithromycin, an antibiotic, with Dex and low dose
Thalidomide. It has had great success across the board for myeloma patients with
very few side effects, and some patients have even lowered their doses to a very
minimal one, but it is still effective in holding their Myeloma in check.
Another option Andrew offered me was to enter into a trial he is running
here, at the Alfred Hospital, with PI-88. It seems that it is side effect free
and Andrew is quietly confident that it is doing some positive things. I'll be
watching the outcome of that!
The side effects of Dex can be quite bothersome for many patients, so I was a
bit nervous the first morning I was to take it. However, I felt fine and apart
from feeling very, very well, and full of energy, I had no other side effects
from it! Amazing!! I found that sometimes, I get a slight feeling of heartburn,
but a dose of antacid soon stops that in it's tracks. I think I'm one of the
lucky ones who really doesn't suffer too much from taking the steroids we
Myeloma patients must take! For that I count my blessings! Now I just have my
fingers crossed that this combination of Thal and Dex works for me, and my
protein level is lower when I see Andrew in Feb. Wish me luck!
February 2002 The results for this month were a little encouraging,
but nothing to get too excited about just yet. My protein level had slowed down
and had only risen 1 point from 9g/L to 10g/L, instead of more than doubling as
before. Maybe the Dex was kicking in and next month we'd see a drop or at least
a leveling of the number. I asked again about adding Biaxin to the mix, and
Andrew still wanted me to stick with Thal and Dex for another month to see what
happens. Still interested in BLT-D....
March 2002 It seems that the addition of Dex slowed the upward trend
of my protein, but hasn't halted it. Now the level is 12g/L - obviously going
the wrong way despite adding the steroid. So now what do I do? I still wanted to
pursue the BLT-D protocol that I had heard so much about so I went after it! I
phoned Andrew and spoke to him about getting my hands on some Clarithromycin,
and he agreed that was the right thing to do and he would organise for the
prescription to be in my file when I go to my clinic visit on the 25th. In the
meantime, I rang my local GP and asked him to write a prescription for me for
the intervening days. I now have all the ingredients for the BLT-D protocol. Now
that I have what I wanted, let's hope that I get the results I want!! Fingers,
eyes, toes, everything crossed for the next test results.
April 2002 Clinic visit was the 22nd and I found that after finally
getting the treatment plan I wanted, BLT-D, it appears that it doesn't agree
with me! It had only brought down my protein count by 2g/L in a month, but not
only that, my liver counts were waaaay off the planet! If I kept on this
treatment, I would end up with SERIOUS liver problems. Andrew was pleased with
my blood counts etc, but the liver was a major concern. The only new addition
that would have an effect on my liver like this is the Clarithromycin, so it had
to go. Andrew wanted me off the antibiotic right then and there. After seeing
the counts, I wasn't going to argue!!
I felt that as Thal and Dex didn't hold the Myeloma back when I took it in
January and February, removing the Clarithromycin and going back to Thal/Dex
again would be of no benefit, so I opted to stop all drugs and go into the trial
of PI-88 Andrew is running. Now I have my lab rat hat on, or as Andrew
corrected.....a sophisticated lab rat. He is very pleased with the results he's
seen from the trial so far, and still there are no reports of ANY side effects
at all from those in the trials. Sounds too good to be true, doesn't it?!
So, now I have stopped all drugs and will enter the PI-88 trial, should I
qualify after the battery of tests I have to have beforehand. I'm going to be
tested from head to foot, including my heart, urine, blood and a BMB. Fingers
crossed that now I've stopped everything the Myeloma doesn't go stupid, but on
the upside, the side effects I've been having lately - mainly the cramps - may
ease off a little now. Sure hope so.
Let's hope that should I get into the trial - and I don't see why I shouldn't
be able to - this works well for me. It just means a small injection under the
skin on four consecutive days each week. They are using Mon, Tues, Wed and
Thurs, then nothing again until the Monday when I do it all again. The trial
will go for eight weeks, and if at the end of that time, I have responded, and
continue to respond to the PI-88, I can opt to stay on it if I want.
Alternatively, if I don't respond to it during the trial, I will be taken off it
and we'll then explore other treatment options.
May 2002 I failed to get on to the PI-88 trial as there is a problem
with a clotting factor in my blood. Nothing can be done to improve it, so after
waiting 6 weeks to get on to the trial, and taking no drugs at all, I was so
disappointed that I couldn't take part. Meanwhile, my Myeloma was slowly
advancing and I have run out of the 'easy options' that I had been lucky with
June 2002 It's off to hospital for me now to have some 'serious' chemo
to knock the beast back down again, and then after that I'll be having a mini-allo.
Some time ago I was HLA tested for this and a match has turned up for me, and a
very good match it is too! He matched me on all the antigens that are tested
these days - 14/14! Now we just hope that I don't encounter any major problems
and the whole procedure goes nice and smoothly. First, I have to have two or
three doses of chemo to bring the Myeloma back into control, and then three
months or so down the track, I will have the mini-allo.
All prayers, good wishes and positive vibes gratefully accepted.
July/August 2002 I have now had two doses of DCEP (Dexamethasone,
Cisplatin, Etoposide and Cyclophosphamide) and we are waiting to see the
response I've had to these before deciding if I have to have another one or not.
If not, then we move on to the next step which will be the mini-allo transplant.
The guy I have matched lives in Western Australia and it seems that we are a
very good match. The blood is tested here for 14 antigens and we match on all
14! Hopefully this is a good thing for me! Apparently I have been 'penciled' in
for my transplant to go ahead in September some time. Nothing definite has been
set as yet.
September 2, 2002 The DCEP I had lowered my Myeloma protein down to 7g/L
from 26g/L, so I'd say it did it's job. Now the scarier stuff starts!
I'm booked to have all the pre-transplant testing done on the 5th and the 9th
of September. Next I am to have my faithful little port removed on the 12th
because it can't handle all the transplant stuff. Then I will be admitted to
hospital on the 19th of September to have a Hickman catheter put in.
Chemotherapy then starts the next day in readiness for the transplant which
happens on the 25th. Please spare a good thought or two for us all, and any
prayers you feel like sending this way will be accepted readily. Hoping like
heck for a good result from the transplant, and that I can emerge out the other
side not too badly battered by all of this.
September 17, 2002 Tomorrow, Wednesday, is my last day of freedom for
a while!! Thursday morning I have to be at the hospital at 8:00am for my Hickman
to be put in, then Friday it all starts. :~(
I'm just a wee bit concerned about the chemo that is supposed to suppress my
immune system - but not completely deplete it - when I have bugger all immune
system left anyway!! At my last blood test last Monday my platelets were 47, WCC
1.86, neuts 0.91 and HgB 116!!! There's not a whole lot to knock down, I'm more
than half way there now!! I think I'll speak to Andrew to see what he proposes
to do re the dose of chemo I'm to get. At least my shouler/chest area is feeling
better now after having my port removed. It's still a tiny bit sore, but nothing
to speak of now.
September 23, 2002 (From Chris) Pat didn't have a good start to her
pre-transplant admission when her Hickman was supposed to be inserted at 10.30am
last Thursday and she finally got back to her room at 7.00pm!! The Alfred is a
big city hospital and several emergencies during the day meant her schedule was
put back seven times-on one day! On day 2 she started with Fludarabine with
Atgam on day 3 which will go for 10 days. Tomorrow (Tuesday) Melphalan is given
for 2 days and Cyclosporin starts with Mycphenolate on the following day. She
had a strange light headed reaction to Benadryl and this was changed to Claritin
which seemed to work well.
When I left her this afternoon her temperature was rising and a broad
spectrum antibiotic has been given with cultures taken to determine the cause.
Apart from all that she is still in fine form and has all of the nurses
laughing, as we all expect. Pat's primary care nurse has been nominated to
collect the donor cells tomorrow, which thrilled her no end, from New South
Wales and will fly back on Wednesday afternoon, Aussie time, and at this stage
the transplant will go ahead at approx. 8.00pm on Wednesday evening. So fingers
crossed, prayers said and all the good vibes for then. Her original donor was
across the other side of Aussie in Western Australia but after looking closer at
Pat's blood antigens a better match was found. We are trying to get hospital
access to the net but until that happens I will keep you all informed of Pat's
progress. All for now, Chris
October 6, 2002 (Chris) When most of you last heard from Pat or myself
we had probably told you about her having a really bad time during the week. The
doctors now think that this was due to the cells engrafting as she has done a
complete turnaround in 2 days! Her WBC have gone from 0.01 to 1.9 and
Neutrophyls from 0.02 to 1.86 and her platelets and haemoglobyn are holding
well. She goes on to oral cyclosporin tonight and the only remaining iv will be
for Vancomycin at night. She was allowed to go outside for a couple of hours
today and didn't really want to go back- I wonder why?? She is obviously still
very weak and it will all be a very gradual process but she is doing extremely
well and the docs are talking about her coming home around mid-week! When she
does come home she will be going to outpatients clinic on Mon/Wed/Fri for
checkups and anti-rejection drug IVs until around day 84 post transplant.
But-she's on her way and keep those good vibes coming. Cheers, Chris
October 9, 2002 I've broken out of 7 East. It's sooooooo nice to be
home. I've just had a relaxing bath and am now ready for my own bed!! Lovely.
Thank you all once again for all my lovely cards you sent to me while I was in
hospital. It was terrific to see the mail come in each day!! :~)
My counts today were more exciting than the other day when I posted - WCC
7.05!!!!! Neuts 2.18, platelets are still hangin' there at 59 - and I haven't
had any more for about three days now - and my HgB after having the 2 units
yesterday is now 115. Not bad, huh??!!
I now have to go back to the hospital every Mon, Wed and Fri for treatments -
Gancyclovir and Intragam. The Intragam only comes on a Wednesday. There will
also be loads of blood tests etc to check the cyclosporin levels etc. Fingers
crossed all goes well and I won't have to be admitted again.
However, for the moment, I'm home and I'm enjoying it. :~)
October 29, 2002 Just a quick post to let you all know how I'm getting
on. I now have a lovely rash all over my face, down my neck and a little on my
chest and back. The worst part is below my ears and down my neck a little. It's
prickly itchy and driving me nuts at the moment. Andrew saw me yesterday and
gave me some steroid cream to put on it which is helping, but I know with my
hands and feet, it took a few days to really kick in and stop it. I'm kinda
pleased that I have this rash because it must mean that I have some GvHD which
is what we want if we expect to knock the Myeloma off it's perch.
My blood pressure and pulse rate have risen rather impressively since being
on the oral cyclosprin, but are being watched closely. I was on a BP med but was
taken off it on the weekend as my feet and ankles were ballooning up sooo much.
It was really painful and I couldn't have my feet down for more than half an
hour before they'd begin to swell. Now that I've stopped it, I have feet and
ankles again, but my BP has risen a bit, but not high enough yet for the docs to
want to put me back on another one. We'll see what tomorrow brings.
My counts are all excellent - my platelets are actually the highest they've
been for months at 109!! My WCC and neutraphil counts are in the normal range,
and my HgB is 103 - a little bit low but higher than it was. Tomorrow I'm to
have a BMB to see what effect my mini-allo has had. Fingers crossed for some
positive results. I expect to have a loooong day at the hospital tomorrow as the
BMB was added to the schedule, and Wednesdays are a longer day anyway than
Mondays and Fridays because I have two IV drugs, as well as needing an infusion
of magnesium most times.
Must go and lather some more cream on my bod to stop the itch - it is
actually better now than it was on Sunday! When I saw Andrew yesterday, he asked
me how I was, so I said I'm fine, but I look poxy, fix it!!! He looked at me and
smiled his cheeky smile that I've become used to seeing, and said "we need some
of this, you know!" :~)
November 20, 2002 Just a very quick update on me. I'm home from
hospital again, after almost two weeks, and it was proven that I did indeed have
a mild case of GvHD in my gut causing pain and the runs!! Yuk!!! It seems to
have resolved now and my diet is almost back to normal. I'm taking Pred every
day (60mgs) which we will start to wean after a month.
I was taken off Gancyclovir today because it's doing a number on my platelets
which have dropped to 30!! I also have the beginnings of TTP - a kidney problem
which causes havoc with counts - mainly platelets and HgB as well. I had one
unit of blood before coming home from hospital on Monday to boost the numbers!
I'm taking sooooooo many tablets I shake, rattle and roll. The good thing is
that I feel well and seem to be doing okay according to the doctors. I'm pleased
with that! I'm thankful that the GvHD I've had has been mild, but hopefully
enough for it to knock off the Myeloma cells!! Oh, and when I saw Tony on
Monday, he said that although they haven't got the exact figures as yet, I do
have evidence of male cells in my marrow!! Just call me Patrick!!!!! :~)
November 30, 2002 (Chris) Pat is back in hospital after a week of low
blood levels across the board which suddenly plummeted about a week ago. When
she came out of hospital 2 weeks ago she had a 'touch' of TTP which apparently
affects people who have had a BMT and causes kidney dysfunction and generally
low bloods. Last weekend started a week of going into the hospital each day to
check blood levels and as the week wore on she got more depressed as the levels
decreased and the experts were baffled. On Thursday last she was very low and
she was admitted and put on a plasma exchange machine as this was the area where
her bloods were apparently effected. Overnight her LD levels (kidney/liver)
decreased rapidly and she has been on the machine each day with good results.
However her WBC, Platelets & neuts continue to stay at low levels. The professor
has said that the problems could stem from marrow suppressing drugs/TTP/Donor
cell rejection caused by the drugs. The thing we worry about at this stage is
that no one can give us a definitive answer and they are working on a
combination of ideas to stem the tide. A BMB showed no activity in the marrow so
a further BMB will be done on the other hip on Monday. If need be a further
infusion of the original donor cells will be done. The uncertainty is the worst
thing for Pat and all your best wishes, cyberhugs and previous experiences with
this problem would be appreciated. Cheers Chris
December 19, 2002 It's the girl herself here! I can sure tell you I've
had enough of hospitals!!!!! However, I still have some GvHD of my gut and a
tiny bit on my skin again. The juggle of drugs has been a fun one and it still
continues. I'm on a very small dose of Sirolimus (sp?) - 0.05mls!! I was taking
5 5mg pills which suppressed my marrow to absolutely nothing. That was why I was
in hosp for the last two weeks or so - waiting for the drug to get out of my
system so that my new marrow could actually do something! It seems that it it is
SLOWLY doing something now but my HgB and platelets are still slow on the
uptake. My ankles are continuously swollen at the moment but the docs are not
overly concerned about that right now! At least I have passed the magic day 84
and am now looking forward to day 100 and maybe my counts sustaining
I'm on 50mgs of Pred each day which Tony has reduced from 60mgs and now with
the tiny dose of the other stuff, maybe some relief from GvHD will happen - not
that I have a huge amount anyway. Fingers crossed.
Please don't expect an answer to many of your reply posts - if you want to
reply to me that is!!??? - as I'm still not very interested at sitting at the
computer for periods of time. There's still a lot going on with me and the lack
of strength in my muscles - not to mention the lack of feeling because of good
old Thal - is really giving me the runs. However, there is NO sign of the
Myeloma at all!!!!! I just need a good dose of strength at the moment. I have a
walker to help me get about which is fantastic, and a higher toilet seat...
little things mean a lot!!! :~)
Good health to all, and I'm sorry I haven't replied to you all before now. I
also really want to thank you all for the lovely cards and good wishes I
received while in hospital. It was amazing the amount of love and support I felt
I had from around the the world. You guys are the best.
Must go. My feet have been down long enough. I can't wait to get some
"normality" back to my life. :~)
Aussie hugs and smiles (amazingly enough!!)
January 7, 2003 Me again. Went to the hospital yesterday as planned
and was pleasantly surprised! Chris and I were making bets on how low my
platelets would be. I said 4 and he said 3 - the last infusion of either blood
or platelets was Friday week ago. Monday they were 14, but yesterday they were
16! Hmmm... dare I hope that I am making some of my own???
HgB was down though from 92 to 83, but I feel okay so Tony let me go. He
decreased the pred from 40mgs per day to 30mgs now, so we'll see what happens.
I'm still on the same baby dose (0.05mls) of Sirolimus and all other drugs (we
are known as Cheryl Court Pharmacy now......you should see the amount of stuff
in the cupboard!!) remain the same.
I had a positive CMV test back in early December, so Tony's being cautious re
the Valtrex. Fair enough. Then he said I'll see you in a week!!!!!! Excuse me...
did you say a WEEK????!!!! Wow!!!! Of course, if anything happens or I feel the
effects of lower Hgb, then go to the hospital earlier.
So now it's fingers crossed and hope that nothing happens. I'm getting
stronger too and have made little advances in not using the walker too! Slowly,
The temp got to 40c today... you should see my ankles!!! I'm sure the heat
has helped make them swell more. Along with the added activity I'm doing - not
too much - they are huge! I'm off to put them up again.
January 14, 2003 Hospital day again yesterday to have bloods and see
Tony. I had to have 2 bags of blood on Friday and as a result, yesterday's count
was 112 - up from 72! Not bad... they were BIG bags of blood! WCC was 3.28 but
it was 10.3 a week ago! Neuts are okay at 2.99 (Tony was happy with that). All
the other stuff they test for is about the same as it was last week. Platelets
dropped a little from 16 to 12, but I haven't needed a platelet infusion since
27th December, so at least the platelets I have are mine. I'd love to have a lot
more!! I have lots of recovering bruises that need more platelets!!!
Tony said that the graft is fragile and needs time to really take a
hold.....which can take for ever, or kick in tomorrow. Given that I still
have/have had (not too sure about this one) TTP and all the problems I had with
the cyclosporin, and then the sirolimus suppressing my marrow waaaaay too much,
I'm not surprised the graft is still fragile!! However, I'm at the level of
sirolimus they are striving for, so fingers crossed that something will happen
and my counts will sustain themselves a little higher and a little better
Chris, Danielle and I went to the local shopping centre yesterday too for a
couple of things I saw in a sale brochure - and I wanted to get Danielle some
new school shoes. It was sooooo good to go out to the shops again... haven't
done that for about 5 months!!!
Aussie hugs and smiles to all
February 7, 2003 I'm still the same. Still have the runs from the GvHD.
The Pred has been lowered from 30mgs to 25mgs now and my Sirolimus (the
immunosuppressant drug instead of cyclosporin) has been lowered to 0.4 ml from
0.5. My counts are still up and down like a yo-yo and there is talk of giving me
the extra donor cells I have, but T-cell depleted. Not sure when that may
happen. I'm at the hospital again Monday - haven't been again this week so far -
for clinic so it might be then. My marrow has been/is very slow to come back
from all the trouble I've had so Andrew's thinking is to give it a kick start
with more cells. Geez, I hope I don't get GvHD again!!!!!!!!
March 3, 2003 Went to the hospital yesterday for my usual weekly
clinic visit and got some more encouraging news. My platelets are now 29 and I
haven't had any platelet infusions for about four weeks. WCC was 6 and HgB was
still 111 after a week - I had to have blood last Tuesday. I am off the Valtrex
tablets and yesterday Tony took me off the Pred - I was only taking 5mgs now
anyway. The plan is now to get me off the Sirolimus entirely as well. Also Tony
suggested that my weekly visits now go out to two weekly. Aaaargh!!
The only black spot on the sheet is that there is visible protein again. It
was 2 about a month ago and now it's 6. Tony said that this could be just a
reaction to the allo transplant that some people do (hey, why not me??? I've
done just about everything else??!!), or it could be the Myeloma. Let's hope
that my new marrow will knock it off as I am officially all boy now!
March 20, 2003 Another quick update on me. Went to see Andrew on
Monday. Wasn't feeling all that well Sunday and Monday - had the runs back
again. Could have been another run in with GvH or it could have been a tummy bug
going around - which my MIL had, and I took her out just before I felt unwell.
Had to call him yesterday for the latest results of the paraprotein. Not so
good. It's up to 18 now!! First, back in December it was undetectable but my
marrow wasn't producing anything much back then either. The next one showed 2,
then 6 now 18. I'm not very happy about this situation I seem to be in now. As
my system has been so suppressed, my new marrow is slowly recovering only now.
My counts are creeping up - platelets are 57, WCC was 11 and my HgB was 94, and
I haven't had blood for three weeks. Trouble is the Myeloma is creeping back
into the picture again too. I can only hope I haven't gone through all that I
have for nothing.
I'm to go see Andrew on Monday again to talk about the combination of Zometa
and an antistatin drug of some kind... a cholesterol pill. Then next Thursday
I'm having a BMB to see what's going on in the marrow. Apparently I have 100%
chimerism so you'd think that my donor's cells would do something, wouldn't
So, as a result, I'm not a terribly happy chappy at the moment. What do I do
next if this doesn't work??? :~(
April 26, 2003 (Chris) The weekly visit showed an increase in
paraprotein from 25 to 41, obviously not good. At this stage Pat is due for her
infusion of Zometa next Monday so we are hoping the trial combination of
Fluvistatin, which she has been on for 3 weeks, and the Zometa will at least
halt the paraprotein climb. She has severe right hip pain due to the Myeloma and
we were put on the waiting list for an MRI of at least 8 weeks (!) at the Alfred
hospital, a large public facility where Pat's specialists are located. With a
bit of phoning around I managed to get her into a Private Hospital next Tuesday.
Perhaps some radiotherapy may help her pain after we get the MRI result. So, its
a wait-and-see situation with the non-toxic combination therapy, but we can't
wait for long and options are running out.
May 5, 2003 (Chris) The weekly visit was not encouraging with the
paraprotein continuing to climb and creatinine levels 4 times the norm. Pat has
urgently been taken off the Fluvistatin/Zometa trial today and will commence
oral chemotherapy in the morning, at this stage she is still at home. Starting
the first 4 days with 40mg dexamethosone and 400mg cyclophosphomide daily with
50mg thalidomide every other day if she can tolerate it. Then from next week the
same regimen once a week. This appears to be Pat's only chance to knock down the
bad guys now so heaps of prayers and good thoughts are desperately required.
May 17, 2003 (Chris) Paraprotein down by 10 points after 1st week of
treatment, keep fingers crossed for Monday's results after 2nd week.
May 19, 2003 Pat had a bad weekend with severe lack of energy-she
couldn't walk 10 yards without falling in a heap and puffing her heart out.
After our weekly visit today it turns out that the Cyclophosphomide regime of
the past 2 weeks had taken a toll on her hg which was down to 66 (been up around
100 for the past two months)!! She had one unit of blood today and will have
another 2 units tomorrow and will stay off cyclo (cytoxan) for the rest of the
week. Apart from that her total protein is still on the decline and we may get
some sleep tonight after a tense weekend.
May 21, 2003 After a seven-year struggle with the "beast" Pat quietly
passed away last evening. To all of you with Myeloma or caring for MM-ers,
keep up the fight, because that's what she did every waking moment in the
last seven years. Thank you on behalf of Pat for all your support and inspiring
words -- they in turn inspired her and she helped many people stricken with this
Love, Chris, Lauren & Danielle