Part 4: Consolidation Treatment
Chemotherapy Cycle 7
21 June 2005
My first day of my seventh cycle of chemo or you could say my first post op chemo. The
change now is the chemo only goes for two days and slightly different drugs. I will still be
treated with Vincristine and Ifosfomide and a new drug called Actinomycin D. I no longer have
the Doxorubicin or Etoposide.
Chemo started at around 10AM and I spent the morning reading the paper but after trying to
do a Sodoku puzzle in the paper I felt sick pretty quickly but no vomiting this time.
I was given an anti nausea drug and this made me feel better but sleepy.
At 5PM I was transferred to the ward as the Oncology department is only a daytime unit at Southland Hospital.
Most patients who have treatment here in Southland have their treatment as an outpatient, the more serious
ones are sent to Dunedin or in my case Christchurch.
Up in the ward I was able to drink a Milo, this is the first time I had anything that isn't water or drugs
while on chemo since my fourth cycle.
I felt fine but a bit tired all evening I was in a shared room and this made it hard to sleep through
the night.
22 June 2005
I had very little sleep throughout the night not just because the nurses came in to put
bags of mesna through, as part of the treatment, but also the other patients in the room kept me
awake. In the morning everyone was woken up early for breakfast and so was I but really it
wasn't too much of a big deal today as I needed to go back down to the Oncology Day unit
at 9:30AM. I ended up sleeping most of the day while the chemo was being pumped through,
I tried to watch a video but I was too tired to watch and went to sleep. Back up at the Medical
Ward I sat in the TV lounge for most of the evening and when the other patients had their tea. After tea
Robert and Stephen came to visit me, normally I don't feel up to any visitors while having
chemo so this made a bit of a change.
23 June 2005
I spent most of the day waiting for a discharge I guess one of the advantages of the
shared rooms is that you have people to talk to in your room while waiting. Although I
didn't think too much of the fact the patient next to me wanted to turn on his light to
read at 5 in the morning because he woke up, fortunately he couldn't find the controls for
the light. I was also a bit concerned at the fact he had a cough as there was no way I
wanted to catch a cold. I actually had some lunch at the hospital cafeteria with mum while
we waited for discharge.
Most of the day I was awaiting a nurse to give me the Neupogen injections to take home but
later a nurse came in to tell me I won't need Neupogen this time round and that I could go
home so we waited around for nothing. I did spend most of the day telling the nurses how
in Christchurch I was always discharged before midday when I had chemo.
At home I managed to eat a small tea with just meat and potatoes my loss of appetite
doesn't seem that bad.
24 June 2005
I was up between 12 and 1 in the afternoon after going to bed at 11 the night before so
this was a real catch up on sleep. The Occupational Therapist came around to deliver a
shower transfer bench so that I can sit down in the shower and slide in and out of the
shower. Next the District Nurse came around to tell me I will now be having Neupogen and
she was here to insert the sub-cut line only she assumed we already had the Neupogen and
we had to get another nurse to deliver it in the evening. In the late afternoon I started
to suddenly loose all energy and feel cold, I was having problems going to the toilet and
I think this is why. When the night District Nurse came around to deliver the Neupogen I
mentioned how I was feeling and the fact I could hardly eat tea, I checked my temperature
and it was quite high but not over 38. I went to bed at around 8:30PM just so I could lie in
bed with the electric blanket on this made me feel warmer and more comfortable. Mum had
another District Nurse come assess me but my temperature was still below 38 so no need to
go back to hospital.
25 June 2005
I was a bit better all day today but still had no energy, I ate a small tea and kept an
eye on the temperature but all seemed fine.
26 June 2005
I was feeling worse today than yesterday I spent most of the day just sitting and watching
TV in my room with the heater on. My temperature was quite high in the evening but still
not over 38.
27 June 2005
The District Nurse came once again to do a blood test to find out if I had any infections
and to change the dressing on the Hickman line. After this I spent most of the day playing
on the computer and actually started to feel better.
29 June 2005
We finally got contact from the Occupational Therapist and I am now allowed to remove the
sling but if I felt pain I was to put it back on, I never did after this.
Later in the afternoon I had an appointment with Doctor Kate Bayston at the Oncology unit
at Southland Hospital. During our consultation she called Bridget Robinson in Christchurch
to find out if the Histology report was back. The report revealed that after 6 cycles of
chemo there was still 70% living cancer cells in the tumour that was removed; the ideal
result is less than 10%. As I have entered into a trial I will be randomised between doing 7
more cycles of chemo followed by radiation to the lungs and the
shoulder or to do one very high dose round of chemo followed by radiation. Kate Bayston told
me I now have a 50% chance of being cured and that my chances would most likely be
greater with the 1 high dosage chemo but she couldn?t say exactly as this is a trial to determine
which treatment is better. If I didn't want to do the high dose treatment I
could pull out of the trial and then I would just do the 7 final cycles of chemo all of
which could be done in Invercargill. I was told the radiation would now take place after
all 7 cycles of chemo were finished this means treatment could end up going past Christmas
and New Years. The radiation must be done at Christchurch or Dunedin Hospital.
30 June 2005
Still not sure of whether I should do the high dose chemo or the 7 lighter cycles mum and
I were given the name of a former patient, who had a high dosage chemo for a different
type of cancer, so that I could talk to him about how he handled the treatment. After
talking for an hour I was still pretty keen to do the 7 lighter cycles of chemo I felt
that my body may now be totally free of the cancer but can not be certain as the Ewings
Tumour often has a spread of small cells that can not be picked up with regular scans.
I felt that 7 cycles of chemo and radiation should be enough to kill off any remaining
cells and I was concerned about some of the side effects of the high dosage chemo and the
very high risk of infection. I was prepared to pull out of the trial if I was randomised
to do the high dose treatment.
1 July 2005
Today I went around to my old flat for the last time, the reason is that Matt and Aimee will be
moving out today so I went around to remove a few items I had left behind. With my sling off I
was able to drive myself down to my old place this was my first time driving since my operation.
At first I felt a bit of pain when I placed my right hand on the wheel but nothing too
serious if it hurt too much I would rest the arm on my knee while driving. At this stage
I think any long trips are out of the question.
3 July 2005
One of the most remarkable things has happened today. Prior to my surgery Doctor Beadle told me
I would never be able to raise my arm above the height of my shoulder once surgery was complete,
well I am pleased to report he was wrong as I can now once again raise my arm above my shoulder.
Mum was certainly surprised when I showed her.
I am now passed the neutropenic stage of the chemo cycle and did not end up in hospital and have been feeling fine most of the time this cycle. Mum and I travelled to Christchurch so that tomorrow we can attend a Sarcoma Clinic at Christchurch Hospital.
8 July 2005
Katrina took Mum and I to the hospital for the Sarcoma Clinic, first we had a meeting with
Ali from the Bone Marrow Unit. She mainly talked about what the high dosage treatment
would involve. She explained that there is a high risk of infection and most patients end
up getting sick when they do this form of treatment. If my temperature goes above 38 I
will still be treated with antibiotics. This treatment causes my Stem Cells to be wiped
out and white blood cells to fall to dangerously low levels and as a result I will be
given a Stem Cell transplant of the Stem Cells I had taken off in March. The risk of not
surviving the high dose treatment is low like only 2.5%, this was the main thing I was
concerned about as I hadn't handled the first 6 treatments well and this treatment is
far more harsh.
Next Ali accompanied us to the Sarcoma Clinic where I was able to talk to both Bridget
Robinson and Doctor Beadle. Doctor Beadle was impressed on how well my shoulder has healed
and the fact that it is almost like I have gone beyond his expectations, my arm can be
raised above my shoulder and I was told I would never be able to do this again. I am told
I can do any activity I want provided it does cause any pain and if it does I must stop
right away.
I was then given the second bit of good and that is it appears when Doctor Beadle did the
surgery he got a good margin around the tumour so spread beyond the site is less likely
but of course we don't know if the cancer has spread or not. I was shown a photo of my
collar bone which had been cut open; the photo revealed that there did not appear to be
any cancer in the bone meaning less chance of spread to other parts of the body.
Finally at the meeting we discussed the higher dosage treatment versus 7 lighter cycles.
Due to the fact the surgeon got a good margin around the tumour radiation to this area
will not be necessary and there will be no radiation to the lungs if I am to do the high
dose treatment as this will cause permanent damage to the lungs. I asked Bridget what
would happen if I was to do the 7 lighter cycles of chemo and the cancer reappeared, the
response was very unlikely I would be cured with either treatment. This has lead me to
seriously rethink my decision to drop out of the trial if randomised to do the high dose
treatment as the high dose treatment is really seeming a better option even if I will be
really sick for a few weeks. It seemed the way Bridget was talking as if she seemed to
think the high dose treatment was better but couldn?t tell me as this trial is to determine
which is better; patients not in the trial only receive the high dose treatment if there
is evidence of spread in the tumour to other parts of the body.
I have been left with a lot to think about and after our appointment we were now free to
go but we didn't go home until the following day as we weren?t sure how much time we
would spend in the hospital.
This is a copy of the image of the tumour removed, the bone has been cut open to reveal the
amount of spread to the bone.
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