21 June 2005
My first day of the seventh cycle of chemo or you could say my first post op chemo. The difference between the earlier cycles of chemo and the post op cycles is the change in drugs and chemo now only runs for two days instead of three. For this cycle I will be treated with Vincristine and Ifosfomide and a new drug called Actinomycin D, I no longer have the Doxorubicin or Etoposide. The outcome of later cycles will be determined once the Histology report has been released. Chemo started at around 10am and I spent the morning reading the paper but after trying to do a Sudoku puzzle in the paper I felt sick very 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 medical 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 as I was in a shared room 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 was 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 just after midday 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. 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.
27 June 2005
I finally started feeling better today having been concerned all weekend that my temperature was going to climb over 38 degrees. Today the district nurse came to visit and change the dressing on my Hickman line, the dressing change normally takes place on a Monday if I am not already in hospital.
29 June 2005
I received a phone call from the Occupational Therapist this morning and I am now allowed to remove the sling but if I felt pain I must put the sling back on, I never did put the sling on again.
Later in the afternoon I had an appointment with Doctor Kate Bayston at the Oncology unit at Southland Hospital. The purpose of this appointment was to discuss the direction my treatment would take after the seventh cycle of chemo. After the seventh cycle my treatment will now one of three possible paths depending on the Histology report. If the Histology report reveals less than 10% of living cancer cells in the tumor then I would be considered to be Good Risk. Those patients considered to be Good Risk could either do 7 cycles of VAC (Vincristine, Actinomycin D, Cyclophosphamide) or the standard VAI (Vincristine, Actinomycin D, Ifosfamide). The VAC option is considered a lighter option and may even be able to be done as an outpatient. Those with more than 10% living cancer cells will normally receive 7 cycles of VAI which is the same as the seventh cycle of chemo that I just completed. However as I am on a trial I may instead end up doing a new higher dosage treatment path which will take just 28 days and then my chemo is over, however this higher dosage of chemo carries a lot more risk than the standard treatment.
During our consultation Doctor Bayston 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 tumor that was removed; the ideal result is less than 10%. This is obviously a huge disappointment and not the news I wanted to hear. 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 Year's. 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 differenttype 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 cannot be certain as the Ewings Tumour often has a spread of small cells that cannot 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 drive in the car 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
It has now been over a month since my surgery and today I had a rather positive surprise with my recovery. 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. As the pain in my shoulder is now very minimal and I am starting to feel on the mend I decided to see just how high I could raise my shoulder and was pleasantly surprised to see I can raise my hand above my shoulder as I normally would be able to. My parents were certainly surprised when I showed I could raise my arm once again.
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.
|Part 1: Being Diagnosed With Cancer||Life Before Cancer • The Diagnosis • Treatment Begins|
|Part 2: Induction Treatment||Chemotherapy Cycle: 1 • 2 • 3 • 4 • 5 • 6|
|Part 3: Surgery||The Surgery|
|Part 4: Consolidation Treatment||Chemotherapy Cycle: 7 • 8 • 9 • 10 • 11 • 12 • 13 • 14|
|Part 5: Life After Cancer||Removal of the Hickman Line • 2006 • 2007 - 2010 • 2011 - 2016|