My C.M.L. Journey : Judy Telford
My journey began on October 2nd 1992, I went to my local doctor because I had a persistent pain in my left hip, he suggested blood
tests which I had earlier that week.  My doctor was away, but the surgery rang to ask me to call in as the tests were back.  I walked
into the surgery and felt uncomfortable, because the receptionist, who I knew well wouldn’t look at me.  I was ushered into the
doctor and a man I had never met before started asking lots of questions.  He asked to examine me, not in the hip area, but under my
rib cage, looking for an enlarged spleen.  I had none of the symptoms he asked about, but the blood test was pretty clear, I had
something wrong with my blood, and cml was suspected.  He arranged for me to go to Peter Mac, a well known Cancer Clinic here
in Melbourne on the next Monday, and sent me home.  

                              
Judy with her family                                                                                        Judy's brother is her donor



Well the weekend was like living in a thick fog, I couldn’t sleep, didn’t know how to tell anyone, and couldn’t really concentrate on
anything.  Unfortunately, my son Cameron was with me at the doctors, so he knew immediately that something was wrong, and as
he was 14, there was no way I couldn’t tell him.  We went home, and I rang my husband, he came home and we sat in disbelief,
not really knowing what to do.  Monday came slowly and we finally went to the Cancer Clinic where I first met Ian Cooper, the
most wonderful Doctor I have ever met.  He was so caring and took lots of time to explain what was going on.  He arranged for a
bone marrow biopsy the next day and tried to reassure us that things would work out.  My first bone marrow biopsy was performed
the next day, with one vallium tablet as the only pain relief, it was quite a shock, but I was so scared about the results I hardly
noticed the pain.  
The results came back about a week later, cml, and ph+.  Dr. Cooper said that this was a very normal form of cml, and that this
made treatment options more successful.  I was given Hydroxarea, and sent home.  I had weekly blood tests for a few weeks until
my white cell counts dropped to normal levels and life returned to some form of normality.  During this time Dr. Cooper asked me
to consider the treatment option of a bone marrow transplant, as at that time there was little other treatment that offered any chance
of long term survival.  The first step in this was to see if there were any 6:6 matches in my family.  I have 2 sisters and 1 brother
who were all very willing to be tested.  My brother had not been to the doctors in a long time and hated injections, so as soon as
they took the blood test he fainted.  The nurses immediately decided he would be the match and we all laughed.  After about 3 weeks
the hospital rang my doctor to tell him there were two perfect matches and after further testing my brother was chosen.  The next
step was to meet the transplant team and decide if this was an option for me.  The team was at another hospital, The Alfred, here in
Melbourne and after the initial consultation we decided this was the best option for me.
A family meeting took place, where the team spent along time explaining the transplant to my extended family and friends and the
following week I went into hospital for the transplant.  Five days of tests, then seven days of chemo followed.  The first day of
chemo was in tablet form, Busulfan, then followed 5 days of chemo through the Hickman catheter that had been inserted in my
chest, then one day to rest before the transplant.
The transplant took place on March 26th 1993, 2 days before my 41st birthday
My brother came into hospital the night before and was operated on early in the morning.  I was given the marrow through the
Hickman about 10.00 in the morning.  It took about an hour to go through.  My transplant doctor walked in about half way through
and asked if I had any phone calls, I laughed and said no, of course not, he was disappointed and said he had always wanted to say,
I can’t talk now, I’m having a bone marrow transplant.  This is me about half way through.  It is really a very simple procedure, and
quite a let down after all the build up.  
Once the transplant was over the waiting begins.  First you wait for the nausea to start.  It took about 3 days for me to start feeling
unwell.  Unfortunately, I was unable to take most of the nausea medications available, so I was sick a lot.
My bowl was never far away, but I found that as soon as I was sick I felt better, so although unpleasant, it was not as bad as I had
imagined it to be.




Losing my hair was something I wasn’t looking forward to, but in the end, once it started to fall out, I asked one of the nurses to
cut it off, because it made such a mess falling out slowly, it was a relief to have it over with.  After about a week my counts
dropped so low I was put into strict isolation and the difficult part of my time in hospital began.
This picture shows what was thought to be gvhd, but actually was an infection I developed.  I guess this is the most honest picture
of what I felt like at that time.  My face was puffed up with all the drugs, my hair was all gone and my mouth was full of sores
which made eating, and even talking difficult.  Having said that I want you to know that the nurses and doctors at this time took
good care of me, and my memory of this time is quite blurred. The next milestone for me came when it was clear the transplant was
working.  
My counts began to rise again, first platelets, then neutrophils, and finally red cells.  
This was the day my neutrophils had gone above 0.5% and I was allowed to leave my room for the first time in 30 days.   This was
the day I was first allowed to go home on a trial visit, to see how I managed.  This is my 2 daughters and my husband Rodney.  He
has been my rock in all this.  He had to take care of the children for the 6 weeks I was in hospital and never missed visiting, even if
it was 11 p.m. The photo below is the taken the day I went home.  My mum was a great support to me, helping with the family and
taking care of me as I slowly recovered at home.

The young “cute” doctor in the picture was the doctor I saw every day in hospital, the registrar for the bone marrow transplant
unit, and just a really nice guy.  

This is the first day after all the drips were taken out, quite a big step, as  now I had to take all medication orally.

Going home was really scary, as I was again responsible for my health and well being.  I was so frightened of infections, and how I
was going to manage away from all the care I had had available in hospital.  But as with everything else, it was really no big deal, I
did manage, with the help of my wonderful husband Rodney, and my devoted family.  My children were amazing, they took on the
role of taking care of me.  My 10 year old daughter knew when my tablets were due and made sure I took all I was supposed to,
initially this was about 40 tablets a day, replacing all the things in my blood the chemo and transplant had depleted, and antibiotics to
protect me from infections.     My 13 year old daughter took on the cooking responsibilities and my 2 sons looked after everything
else until dad came home from work.  My mum stayed with me during the day, and cooked and cleaned while the children were at
school and my husband was at work.  I slowly regained strength and began to eat again.  During my time in hospital I was mostly
fed intravenously, so learning to eat again was one of my biggest hurdles.  Every thing I ate just bounced back up again and I never
went any where without a bucket, but over time this improved and I stopped loosing weight and started to gain a little again.  
Although I was officially home from hospital I still needed to go in for treatment every second day for about a month.  This was
mainly intragam, a blood product to boost my immune system.
This picture shows  the first bone marrow biopsy after the transplant, and showed 100% donor cells.  This one was a lot more
pleasant, they gave me something to relax me and I didn’t really feel anything.  My husband took this photo, to show me what was
done.  







At home one of the daily tasks was to clean and flush the hickman, and I was adamant that I do this.  It was always supervised by
visiting nurses until they were sure I could manage, but it is always best for the patient to do these things for themselves if possible,
to avoid unnecessary exposure to bugs from someone else.








For the first three months at home, I spent much of my time in bed, or laying down, as my energy levels were very low and I tired
easily, but gradually my strength returned and I began to become more adventurous and walked around the local streets.  
This is my brother and I not long after I came home from hospital.  Its hard to explain how I felt about what he had done.  I didn’t
know how I could thank him, but all he wanted for thanks was for me to get better.  I was so lucky to have a perfect sibling match,
and even more lucky to have a sister that matched too, so the doctors could do a mini transplant in a tube to decide which was the
better donor.  

The visits to hospital became less and less as I began to recover.  There were some minor hiccups, but I never spent another night
in hospital, and although I had gvhd in the gut and eyes, I never developed the skin rashes most people have after transplant.  Finally
the visits to hospital stopped around 4 months after transplant, and my hickman was removed.  What followed was monthly visits to
my transplant doctor and 6 monthly tests to check all was well. There was a major check up at the 12 month visit, where I had
biopsies taken from my eye and mouth  and lung function tests, and heart tests.  All were good, although there was some evidence
of chronic gvhd in the liver.  This only showed up in tests and I had no other symptoms.  My doctor said this was like a little
insurance policy, a little chronic gvhd would keep the cml away, and destroy any cells the chemo missed.   
I had bone marrow biopsies every 6 months for 2 years, then once a year for 5 years, after that I had yearly blood tests and the dna
test was done by blood.  As long as all my cells were male, I was considered in remission.
During this time I became involved with the Bone Marrow Donor Register here in Melbourne.  I was a survivor, and the best person
to talk to people about becoming a bone marrow donor.  I spoke at schools and to service and community groups in the hope that
people would join the bone marrow donor register.  I hadn’t really appreciated how lucky I was until I met people who were hoping
to find a matched donor from the register.  I had a great need to give something back, after all the help and support I had during and
after my transplant.  

For the first 18 months after transplant I did not return to work as a teacher, mainly because my doctor was not happy with me
being exposed to all those bugs that went with teaching children, but I felt I was not truly well until I could return to work.  So after
much pestering he finally gave in and I returned to full time teaching.  Returning to work was the final step for me in my journey to
health again.  I had very few long term problems after transplant, the only real concern being more frequent chest infections than
before.  For six years I was treated with intragam, mostly over the winter months, and this certainly helped my immune system.
I have to say that I took 18 months to feel really well again, but after that time my quality of life was very similar to before c.m.l.  
the only real difference for me was that I had an appreciation of life that comes from experiencing cancer.  
Things that bothered me before, no longer did, and just getting up each morning and seeing my children and husband happy again
was all I needed.  I have seen my children grow to caring adults with a zest for life greatly enhanced by the experience we shared
together.   The relationship my husband and I share has been enriched by our shared battle.  
I had yearly check-ups til 10 years post transplant then asked my doctor if this continued to be necessary, his response was that he
had a few oldies as he called us showing signs of relapse and felt it was a good idea to continue monitoring.  At this time he sent a
letter to my local doctor which said I was cured, but monitoring would continue for the foreseeable future.  At 11 years post
transplant the first signs of relapse were detected, but my doctor chose not to tell me as he had seen this before and the cells had
disappeared next time tests were done.  At 12 years post transplant there were clear signs of relapse in my pcr test, but nothing in
the peripheral blood.  Unfortunately this test was filed away and my doctor did not see the results until June 2004 when I had a
blood test at my local surgery because I was feeling unwell.  This test revealed major relapse in my blood.  I went immediately to my
oncologist who had just finished reading my file and had found his mistake.  The first thing he said to me was, unfortunately you
had relapsed last November, but no one looked at the test.  I could not react to this at the time as I was in shock.  Although I always
had relapse in the back of my mind, I had really thought I was save once 10 years had past.  The next few weeks were really
difficult.  I had to come to terms with having c.m.l. again and I felt so let down by someone I trusted.  I’m sure my oncologist had
similar feelings, he was certainly very upset by his mistake.  Any way I had to move on, dwelling on his mistake was not going to
change the facts.  One of the most important things I did at this time was to start doing some research of my own.  I found this
group and Rob’s cml group.  I put my story up and asked for help.  I was overwhelmed by the care and understanding I received.  I
was soooo frightened, I didn’t know anything about gleevec and was sure I was looking at D.L I’s or a second transplant.  Anjana
and Roy on this group reassured me, and with their help, and the people on this support group I found support, understanding and
hope.  I started on 400 mg of gleevec in July 2004. Initially my counts returned to normal after a couple of weeks.  However, my
neutrophils and white cell counts continued to fall until they were lower than when I was in isolation after transplant.  At this stage I
lowered my gleevec to every other day but my counts continued to drop so I stopped completely for 6 weeks until my counts
recovered.  During this time I had one gcsf injection as I was beginning to get mouth sores and this was thought to be due to low
neutrophils.  Finally my counts began to recover and gleevec was started again.  This time there was an initial drop, but then all the
blood levels returned to almost normal, and have remained so now for almost 2 years.  At relapse I was 100% ph+ by fish test and
had all female bone marrow, which was full of cancer, at 6 months on gleevec this had dropped significantly and now the latest tests
show 0.00% ph+ and even more exciting 100% male cells again, which means my brother’s bone marrow has recovered to such
and extent that it is no longer possible to detect female cells.  There is such a lot more support now, when I first had cml, there
were so few people I could talk to, now I have all my c.m.l. friends here, and Zavie’s chat room as well as the bmt support group.  
Gaining knowledge about my disease and the new treatments available has been such a great step towards regaining control of my
life.  Cancer is not such a scary thing, it is possible to live a “normal” happy life with this disease.  I have learnt to be open and
honest about my feelings, and gathered around me family and friends who have helped me.  Cancer is a community issue, not just
mine or my family’s.  Our local church supported my family through my transplant and since.  The school community where I
worked was immensely supportive while I went through transplant, I received letters every week from fellow teachers and children.  
This time my class has continued to keep in touch as I recover for the second time.  
I’m no hero, and don’t like being held up as one, I survived, for that I am so grateful, and give thanks everyday.  I write this in the
hope that reading a success story will give those of you facing the decision to go to transplant some idea of what you are facing.  If
I can help any-one individually, please email me and I will be pleased to offer any support I can.  








Judy with her daughters                                                                                                                 Judy is a Granny!