A not so good day

We went to see the oncologist yesterday. The news was not the good I had hoped for. The report on the CT scan shows the liver tumours are stable, but at least one lung tumour has increased. Also my CEA is rising - 3000 now, up from 2200 a week ago. I am shattered - all the awful side effects I have been enduring seem to have been for nothing. I had an infusion of Avastin, but was told not to go back on the Xeloda.

The oncologist seems uncertain about what to do. I am to go back in a week's time, after he has had a look at the scan himself - he had only seen the report, not the actual images.

A little brightness - I have had two reasonable meals today. Food still does not taste good, but I am able to take in more than I have been able to for the past few weeks.

The CT Scan

I managed to mess up my appointment time - I thought it was 10.45 am when it was actually supposed to be 9.45. Fortunately they were able to slot me in as the last patient for the morning. I don't know how it happened - blame it on chemo brain that I didn't actually check the time on my appointment letter.

By the time the scan was finished they were delivering lunch to surrounding wards and it smelled so good! What a thing to say about hospital food! It smelled like savoury mince with peas and other vegetables and I thought about it all the way home. I decided a meat pie would be good, so I stopped off and bought two at a deli. Got them home and reheated, only to discover that I couldn't eat more than two fork fulls, despite a liberal dose of tomato sauce. However, it didn't go to waste - Kevin finished it off after his own pie. I had a glass of Sustagen.

Now we wait until Friday to find out what the scan showed. Please let it be good news.

Disappointment

The visit to the oncologist today was disappointing. The results of the CT scan I had on Wednesday hadn't reached him, so we had an extra half hour wait while he contacted a colleague at RPH who looked at the scan for him. The result? No change in the tumours. The disease is "stable". At least it hasn't progressed, but I was hoping for something a bit more positive. He has decided that I need to have another scan in six weeks time.

I had an infusion of Avastin and I am to resume Xeloda tomorrow at a slightly lower dosage, so we will see how I cope this time around. He gave me the go ahead to talk to an oral surgeon about my wisdom tooth. By the time I have my appointment I will be at approximately the same stage in the cycle as I was when the infection flared up last time. Could be interesting.

My CEA has jumped considerably - up to 2000, but the liver function markers are completely normal and white blood cells and platelets are fine, possibly because I have had almost two week's break from chemo. So while I didn't have the really good news I was hoping for, the overall situation is reasonably OK.

The CT Scan

My appointment was for 8.45 am at Shenton Park and I allowed an hour to get from home to the clinic since it was rush hour. It was only just enough time - it took 25 minutes to travel between the traffic lights at Eric Street and Christchurch - a distance of slightly more than a kilometre, but there are two large private schools on this stretch and it was starting time for them. If I ever have to do this again I will find an alternative route.

Once I arrived I had a cannula inserted then sat and waited while drinking the obligatory preparation liquid over an hour. Once in the room, the CT scan proceded normally until the time came for the infusion of the contrast dye through the cannula. The technician set the pump going and left the room. I felt an unusual warm feeling on my arm and almost none of the usual warmth in the lower abdomen. When the technician came back he found that one of the valves had failed and about half the contrast dye had leaked onto my clothing. Yuck! It was a sticky mess. More importantly, it was possible that the scan had failed to register properly and would have to be repeated. The matter was referred to the doctor on duty who couldn't be contacted. I lay waiting for 15 minutes until he was found, had looked at the pictures and decided there was enough detail to make a report.

I really hope this is the case. I am waiting impatiently until Friday and the visit to the oncologist.

Date set for the next CT scan

I had heard nothing about my next CT scan from RPH (the hospital which is hosting the clinical trial I am involved in) even though my oncologist had faxed through the request ten days ago. So I rang the oncologist's receptionist who made enquiries for me. They apparently just got round to scheduling today and it is to be on Wednesday June 16th. This was supposed to be the day I would see the oncologist next, so she has rescheduled my appointment for Friday 18th (to give them time to get the report to the doctor) and has also organised a change of date and time for the Avastin infusion at the Ivy Suite. Hooray for helpful aides - it does make life a little less stressful. The scan is to be at an annex to RPH in another suburb, so I won't be able to take the train. I will have to drive.

I have been thinking that I really need to make a more consistent effort to get regular exercise - it is too easy to spend all day on the computer or the sewing machine. This morning Kevin and I set out for Manning Park, which has been one of our favourite walking spots in the past. However, today turned out to be one of the days that the osteoarthritis in my legs and hips decided to flare up so the walk was not as long as it should have been. It was lovely to be out in the sunshine, though, even if it was chilly in the shade when the wind blew. I had a nap when we came home.

I have been nauseous all day today again but I haven't taken any medication. I am still without a sense of taste, except that I find soup liquid quite palatable. Can't say the same for any meat or veges it contains.

A bit like the curate's egg

Today was good in spots.

There was good news from the CT scan. The liver tumours are shrinking. One which was 2.6 cm in January is now 2 cm and another is now 1.4 cm (it was 1.8 cm). To quote the report "similar reduction in size is seen in a number of lesions within the liver and no new deposits identified". YAY! The lung nodules are unchanged since the last scan, and the oncologist says that this may very well indicate that they are not tumours. I am very hopeful that this is the case.

The tumour indicator from the last blood test on Tuesday showed another reduction. Last cycle it had jumped to 1700, now it is 1100. Still a long way to go, though.

I am to have two more cycles of FOLFOX 6 using the PICC line, which will take me to the end of April. Then the line is going to be removed and I am to have Avastin every three weeks and Flouracillin in tablet form. The Oxyplatin will be suspended for a while since I am having such a strong reaction to it. This means that we do not have to worry about getting the PICC line dressed while we are in Queensland in May. I will be glad to see the end of it - it is both unsightly and uncomfortable as the dressing over it irritates my skin.

The oncologist is also going to confer with the colonorectal surgeon regarding possible removal of the primary cancer in my bowel, but we won't know any more about this till the end of April.

And today's not so good part? While I was booked in at 2.30 pm for the chemo, I didn't get into the chair till 3.45 and the actual infusion did not not start till 4.30. We left the hospital just before 8. So I will still be wearing the pump when we go out to lunch on Friday with sister and brother in law to celebrate my birthday .

Exhausted

I got up early and drove to the hospital before 8 am to have my PICC line dressed. The traffic was appalling - an average of 25kph for the major part of the journey. The drive home was a breeze.

I had to fast for four hours before my CT scan which was scheduled for 1.15 pm. I find that if I don't eat regularly I start to feel nauseous, and this happened today. Fortunately I wasn't sick, though by the time they finished with me it was after 3 pm. I bought a tuna patty at the hospital canteen - disgusting! It was dried out and of course tasteless for me. Kevin had dropped me off at RPH and after the scan I caught the train back to Perth and then to Fremantle where he picked me up.

I am now exhausted. Fortunately I cooked some braised beef and mushrooms the day before yesterday, so I don't have to worry about dinner tonight.

A Shopping Spree

I returned 2 books to the library today, so decided to look for some new leather gloves at Garden City since the department stores are in full winter stock mode despite the temperature today being in the high 20s and uncomfortably humid after the storm last night. At least we got some rain - the first since November last year.

I believe I am going to need the gloves when it gets cold - I suffer from Reynaud's Syndrome anyway and the Oxyplatin is also affecting my fingers. I wanted fine leather without a lining for maximum flexibility.

Gloves found and bought, I bought some night cream, then decided to look in a kitchen ware store for a small saucepan to use on our new induction cooktop. I have had to discard one which I used lots. I found one, then noticed there was a special on a pressure cooker - almost half price. My old pressure cooker is aluminium and therefore unuseable on the new top. I like to use a pressure cooker for soups in winter, so that was added to the purchases. Then I used a book voucher I was given for Christmas. I haven't bought so much at once for ages! I must confess that it rather fatigued me too.

My mid-treatment CT scan is on Thursday and my next chemo is scheduled for next Wednesday. I am hoping for a good report.

What cancer looks like

A CT scan takes a large number of images in slices across whatever organ/s are being examined.


Here are some CT images of the diagnostic scan that showed my metastatic cancers. Each one of those dark spots on the organ to the left (the liver) is a tumour.

Today is day 8 of the third cycle. I have not had any vomiting or diarrhoea, but am still a bit nauseous and feel very tired. Almost everything tastes metallic, though I have bought a mouthwash (Biotene, recommended by a friend in New York who found it useful when she was having chemo) which helps a bit. Food generally does not taste good, but I am eating OK. There is a new side effect - my teeth ache. I went to have my PICC line dressed today and was told to let the oncologist know about this when I see him next week. I took some Panadol and it has helped.

Third Cycle

The third lot of chemo started today - four hours, then the pump attached. No problems, except the pump started beeping loudly as soon as I got in the car and the readout said " high pressure." I've been told that usually means there is a kink in the line, so I tried to find where the problem was with no luck. Back to the clinic and the problem was quickly solved with a new valve. I'm glad it happened so quickly - it would be a pain to have got halfway home and have to turn back.

I visited the oncologist before the chemo and he repeated the anti-nausea drug regime I had last time. Hopefully this means another good cycle to come. He also spoke about the possibility of surgery for the primary bowel cancer after three months of chemo. It would be good if this happens and the primary could be eliminated so the chemo is directed at the metastases only.

I asked if he had results from last week's CT scan. There seems to be a certain lack of communication between RPH and its consultants - he didn't even know I had had it. He immediately requested a faxed report and told me to come and see him after the chemo. I didn't have to - he came to see me. Good news - there is indication that at least some of the liver tumours have shrunk. Unexpected after only two lots of chemo, but very heartening. I forgot to ask about the lung tumours.

The CT Scan

I felt well enough to cope with public transport this morning, so Kevin dropped me off at Fremantle train station at 11 am. I just missed the train and the next one was 15 minutes later. OK - should still be in plenty of time. BUT - due to the heatwave we are having the trains are slowed down, plus this particular service stopped at every station. By the time we reached Perth I was starting to think I mightn't be in time but before I panicked I had got to McIver (the hospital station), and was at the radiology desk precisely on time at 12 noon.

I had to drink 3 foam cups of a dye solution before the procedure. Last time I did this (for the CT scan that turned our life upside down) it was quite unpleasant and I had to drink a lot more over a longer time span. Today's solution was liquorice flavoured. While I am not a fan of liquorice it was quite palatable and very easy to drink.

I had hoped that they could use the PICC line for the additional contrast dye injection, but apparently the catheter was not suitable for a fast infusion (I have a blue stopper, the dye needs a purple one) so they had to look for another cannula site. My elbow veins are not very suitable - there were valve problems the last two times I had a scan - so I ended up with a catheter in my right hand. I have a large bruise there now.

After the procedure I caught the train back to Fremantle and Kevin picked me up from the station. Easy, and no long boring wait for him. My sole complaint about the whole thing was that I was told to bring along my previous scans - very large envelopes, quite heavy - and no-one wanted to look at them.