The last round of chemo went OK, there was a wee glitch at the beginning, last Wednesday morning. The first step in the oncology day ward is to flush out both PICC tubes and check that blood can be drawn back. The blood would not come back, despite much sucking with syringes. Apparently this is not unusual, it is due to small clots forming on the end of the tubes and acting like a one way valve, fluid can go in, but not come back out.
I helpfully suggested pushing a wire down the tubes, but our kiwi No 8 wire mentality was not considered appropriate. Rather the plan was to inject some anti-coagulant (I was told that it was not drain cleaner) to dissolve the clots and return in 2 hours for another go. That was successful so the chemo could start.
This round, I was to modify the medication I take at home to reduce the hiccuping problems and also reduce my Saturday downer. The hiccup treatment did not work, Thursday afternoon and much of Friday was not good. Teresa found this article which looks very relevant to me. I take dexamethasone to suppress my immune system and give the anti-cancer medication a better go at the nasty cells. That steroid could also lift my mood and as part of the changed regime I was to take an extra tablet on Saturday. I did not take the extra medication and had no hiccups on Saturday. My mood was down, but manageable as I was expecting it and felt in control. I will discuss this with the oncologist when next I see him.
Fatigue and tiredness was definitely worse this time round, From later Thursday until Sunday afternoon I was unable to stay up for more than an hour or so, I was not even able to watch all of the Crusader's Super Rugby match, believe me, that was tough. However I did give in and just go and lie down and try to relax rather than forcing myself to stay up and active, that helped, but I did struggle at times as I hate not doing anything.
So better on the "in control" side of things this time, worse on fatigue, but overall about the same as last time. Today, Monday, I have my normal diarrhea in the morning, but I expect that to clear shortly, I will take a wee rest, then should be able to get into some work. I am feeling positive about the treatment, and looking forward to an end of this phase later this year.
Monday, June 27, 2011
Monday, June 20, 2011
Oncologist Update
The meeting today went quite well, the oncologist was very upbeat.
While the MRI results were technically inconclusive (as reported by the Medical Registrar last week) it was the opinion of the radiologist that the other 2 "things" in my liver were not cancer, and were not likely to be of concern. Dean, the oncologist, commented that the radiologist who reviewed the results was very experienced and that he would trust their judgement.
So the plan now is 2 more cycles of chemo (a cycle is 2 treatments) followed by a CT scan and provided there is shrinkage, particularly in the lung met, then surgery would follow.
The surgery would most likely be a liver resection, plus possibly a Lung Lobectomy. Apparently there is a fair possibility that chemo alone could shrink the lung tumor to a state that no further action would be needed for a reasonable time. There is also the possibility of radiofrequency ablation but that would have to be done in Australia.
In terms of prognosis, I have passed the worst case basis, assuming no spread beyond the two original mets, so average life expectancy now is 20 months. If there is shrinkage then average expectancy increases beyond 30 months. Dean felt that with my current state of health, my ability to tolerate the chemo so far, and that I have not had prior chemo indicate that I would have a better than average chance of extending beyond the normal time.
I guess the only down side to the meeting was that I am feeling very tired and somewhat ill at the moment, I have not recovered to the same extent as I did after my first chemo treatment. The oncologist said that was to be expected and it was likely I would get progressively worse.
While the MRI results were technically inconclusive (as reported by the Medical Registrar last week) it was the opinion of the radiologist that the other 2 "things" in my liver were not cancer, and were not likely to be of concern. Dean, the oncologist, commented that the radiologist who reviewed the results was very experienced and that he would trust their judgement.
So the plan now is 2 more cycles of chemo (a cycle is 2 treatments) followed by a CT scan and provided there is shrinkage, particularly in the lung met, then surgery would follow.
The surgery would most likely be a liver resection, plus possibly a Lung Lobectomy. Apparently there is a fair possibility that chemo alone could shrink the lung tumor to a state that no further action would be needed for a reasonable time. There is also the possibility of radiofrequency ablation but that would have to be done in Australia.
In terms of prognosis, I have passed the worst case basis, assuming no spread beyond the two original mets, so average life expectancy now is 20 months. If there is shrinkage then average expectancy increases beyond 30 months. Dean felt that with my current state of health, my ability to tolerate the chemo so far, and that I have not had prior chemo indicate that I would have a better than average chance of extending beyond the normal time.
I guess the only down side to the meeting was that I am feeling very tired and somewhat ill at the moment, I have not recovered to the same extent as I did after my first chemo treatment. The oncologist said that was to be expected and it was likely I would get progressively worse.
Tuesday, June 14, 2011
MRI Results
We went to the oncologist meeting today, as expected we met with a medical registrar as my oncologist is on leave. Unfortunately the MRI results are not clear as to whether the other 3 small lesions in my liver are cancer mets or not. Further, it is not clear at this stage as to whether it would be possible to resect (cut out) all the lesions, due to their dispersal in the liver, if they are all mets.
The next step, hopefully next week, will be a clinical review by all the specialists as to the next step. Quite possibly it will be to wait for another chemo cycle or so and repeat tests.
I asked about prognosis and possible quality of life and duration, but beyond confirming the worst state (6 months), the registrar said she did not have the expertise to comment and that I needed to talk to my oncologist. Hopefully this will happen next week.
The good take out of the meeting is that my medication has been tuned a bit, hopefully my hiccup issues are resolved and I may not get as far down during the first 4 days of chemo. But overall, the news was not what I had been prepared for, due to a lack of clarity about the diagnosis.
Writing this, the shaking continues. There have been 3 or 4 aftershocks in the past 10 minutes. We have come through the past 2 days with only light cosmetic damage to our property, unlike the majority of Christchurch houses.
The next step, hopefully next week, will be a clinical review by all the specialists as to the next step. Quite possibly it will be to wait for another chemo cycle or so and repeat tests.
I asked about prognosis and possible quality of life and duration, but beyond confirming the worst state (6 months), the registrar said she did not have the expertise to comment and that I needed to talk to my oncologist. Hopefully this will happen next week.
The good take out of the meeting is that my medication has been tuned a bit, hopefully my hiccup issues are resolved and I may not get as far down during the first 4 days of chemo. But overall, the news was not what I had been prepared for, due to a lack of clarity about the diagnosis.
Writing this, the shaking continues. There have been 3 or 4 aftershocks in the past 10 minutes. We have come through the past 2 days with only light cosmetic damage to our property, unlike the majority of Christchurch houses.
Sunday, June 12, 2011
A Wee Bit Better
Overall I am doing somewhat better than the first round of chemo, partly because I have a better idea of what is going on, plus the 5FU infusion pump emptied in time at around midday on Friday, so I am a day further along than last time.
So how did it go:
I tried to change my Tuesday appointment with the oncologist to another day, it really causes a clash with work. However this was not practical, and I found that I will be seeing a registrar on Tuesday as my oncologist is away for the week. That is a pity as I had hoped to go into some detail of the prognosis and next steps.
So how did it go:
- Wednesday, morning at hospital getting the chemo, home about 1:00 PM, feeling fine, could have gone back to work at that stage, but started to feel ill later in the afternoon. Head was OK, able to do some work
- Thursday, progressively felt more ill. Later in the afternoon I really struggled to focus
- Friday, quite ill, brain really mush, found that emails I had sent Thursday afternoon were largely rubbish (more than usual). Felt bloated and near nauseous through Friday night
- Saturday, pretty much bottomed out, started to move around and starting to think ahead by late afternoon. Highlight of the day was Crusaders beating the Blues
- Sunday, really feeling better, constipation resolved (best not to go into that), started to get some stuff done at home, but quite weak and frequent rests.
I tried to change my Tuesday appointment with the oncologist to another day, it really causes a clash with work. However this was not practical, and I found that I will be seeing a registrar on Tuesday as my oncologist is away for the week. That is a pity as I had hoped to go into some detail of the prognosis and next steps.
Wednesday, June 8, 2011
Round Two Starts Today
Today I start my second round of chemotherapy. This means about four hours at hospital with a couple of two hour sessions on a drip, then an infusion pump is fitted for two days.
Overall I am feeling pretty good. I have dry lips and mouth and I have sensitivity to cold, but nothing significant. Yesterday I would have comfortably done a full day at work, except that I had to be at home at 4:00 PM to have my PICC line dressed by Nurse Maud. The nurse also took blood for testing prior to my chemo today - to make sure my blood count is OK.
The trip to Glentunnel did not turn out as well as we had expected. The weather was generally cold and wet and my sensitivity to cold meant that whenever I went out of the warm caravan I felt ill. I recovered quite quickly but it was not pleasant so we came home Sunday morning. We still got some good rest and sleep though.
The next big event should be next Tuesday when I meet with the oncologist again. We are expecting a formal prognosis and the next stage of the treatment plan.
Overall I am feeling pretty good. I have dry lips and mouth and I have sensitivity to cold, but nothing significant. Yesterday I would have comfortably done a full day at work, except that I had to be at home at 4:00 PM to have my PICC line dressed by Nurse Maud. The nurse also took blood for testing prior to my chemo today - to make sure my blood count is OK.
The trip to Glentunnel did not turn out as well as we had expected. The weather was generally cold and wet and my sensitivity to cold meant that whenever I went out of the warm caravan I felt ill. I recovered quite quickly but it was not pleasant so we came home Sunday morning. We still got some good rest and sleep though.
The next big event should be next Tuesday when I meet with the oncologist again. We are expecting a formal prognosis and the next stage of the treatment plan.
Friday, June 3, 2011
Message From Glentunnel
Thanks to all who have reminded me that I have not posted an update for a few days, it does make me feel a bit special and the effort of updating the blog more worthwhile. However my main objective of writing this was to act as a journal that I can look back on, if it informs and helps others facing the same challenges then that is a bonus.
The past few days since Monday have been good, with every day better. I have felt pretty damn good since Tuesday, way better than I had expected, but I do have problems with energy. Yesterday I was able to be at work from about 8:30 until 4:30, from today I likely would be back to my normal work day, beginning at 7:30 AM. However I took annual leave today to take an extended break in our caravan in Glentunnel, next Monday is a public holiday in New Zealand.
Getting back to work has proved to be a rather interesting experience, at least for me. Because I know that I am going to be away from work, and I really don't know what the future holds, I have been very focused and have prioritised based on what I can do to really make a difference. The results have been very good from my perspective, I seem to be working in much the same way as I used to several years ago and sailing over the top of delays and anything that disrupts. Not sure if others around me feel as good about it though.
The MRI scan was interesting, not quite as I had expected. The actual scanning process took longer than I had expected, I was "in the tube" for about 45 minutes in total for the main scanning. The other thing I had not expected was the way the I was moved back and forward during the scan to centre the specific lesions under the scan, unlike the CT scan which is pretty much a one pass activity. The scanning was in two stages, most of the time was taken with the back and forward process, and I had to hold my breath during many the actual MRI processes. There were several of 20 seconds each, for me at least, 20 seconds is a long time to hold my breath. Good practice for working and listening, I guess.
The next stage was to inject a tracer and do about a 5 minute rescan. Then 2 hours later, repeat the process. The objective was to determine if the small lesions that had shown up in the PET scan were cancer or not. If not, the cells were likely to be a benign lesion of some sort, which would have compromised liver cells which would not process the tracer in the two hours so still show up after 2 hours. If they were cancer mets the cells would be active and process the tracer and not show up in the same way. I expect to get the results of this scan during my next chemo session next Wednesday.
So looking forward to a quiet weekend, among friends if we choose to socialise, or much reading and sleeping.
The past few days since Monday have been good, with every day better. I have felt pretty damn good since Tuesday, way better than I had expected, but I do have problems with energy. Yesterday I was able to be at work from about 8:30 until 4:30, from today I likely would be back to my normal work day, beginning at 7:30 AM. However I took annual leave today to take an extended break in our caravan in Glentunnel, next Monday is a public holiday in New Zealand.
Getting back to work has proved to be a rather interesting experience, at least for me. Because I know that I am going to be away from work, and I really don't know what the future holds, I have been very focused and have prioritised based on what I can do to really make a difference. The results have been very good from my perspective, I seem to be working in much the same way as I used to several years ago and sailing over the top of delays and anything that disrupts. Not sure if others around me feel as good about it though.
The MRI scan was interesting, not quite as I had expected. The actual scanning process took longer than I had expected, I was "in the tube" for about 45 minutes in total for the main scanning. The other thing I had not expected was the way the I was moved back and forward during the scan to centre the specific lesions under the scan, unlike the CT scan which is pretty much a one pass activity. The scanning was in two stages, most of the time was taken with the back and forward process, and I had to hold my breath during many the actual MRI processes. There were several of 20 seconds each, for me at least, 20 seconds is a long time to hold my breath. Good practice for working and listening, I guess.
The next stage was to inject a tracer and do about a 5 minute rescan. Then 2 hours later, repeat the process. The objective was to determine if the small lesions that had shown up in the PET scan were cancer or not. If not, the cells were likely to be a benign lesion of some sort, which would have compromised liver cells which would not process the tracer in the two hours so still show up after 2 hours. If they were cancer mets the cells would be active and process the tracer and not show up in the same way. I expect to get the results of this scan during my next chemo session next Wednesday.
So looking forward to a quiet weekend, among friends if we choose to socialise, or much reading and sleeping.
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