My Cancer Diary
Discussion
15/10/2018
Scheduled session postponed for 2 weeks due to agglomeration of platelets (red blood cells). They have to be careful with this since sticky platelets can give rise to thrombosis. I am prescribed a one-month course of injectable blood thinner administered daily at home. Mrs LS seems to quite enjoy jabbing me in the belly with a needle and has taken to amateur nursing with gusto.
We also go over the CAT scan results, which indicate that the liver tumours have neither shrunk nor grown and that the tumour in my colon may have grown slightly since June but it was difficult to tell exactly. There was also some evidence of lesions in a couple of vertebrae, which is not such great news. I am booked in for an MRI to get a better look.
Scheduled session postponed for 2 weeks due to agglomeration of platelets (red blood cells). They have to be careful with this since sticky platelets can give rise to thrombosis. I am prescribed a one-month course of injectable blood thinner administered daily at home. Mrs LS seems to quite enjoy jabbing me in the belly with a needle and has taken to amateur nursing with gusto.
We also go over the CAT scan results, which indicate that the liver tumours have neither shrunk nor grown and that the tumour in my colon may have grown slightly since June but it was difficult to tell exactly. There was also some evidence of lesions in a couple of vertebrae, which is not such great news. I am booked in for an MRI to get a better look.
That brings my story up to date. I will admit to disappointment that the first 6 sessions of chemo did not appear to achieve very much, but the whole subject of cancer treatment is enormously complex and it would be unreasonable to expect them to find the magic bullet at the first attempt. There is a group of oncologists at the hospital who meet weekly to discuss their current patients' progress & treatment, so I am confident that they are being proactive. In addition, the cancer nurses are first rate and the hospital facilities are excellent.
Above all, I am so fortunate to have met and married such an extraordinary woman. She combines compassion with internal fortitude and a can-do attitude that inspires me. I would not have been able to deal with my current situation without her, of that I have no doubt.
To hell with cancer - we have lives to be getting on with.
Above all, I am so fortunate to have met and married such an extraordinary woman. She combines compassion with internal fortitude and a can-do attitude that inspires me. I would not have been able to deal with my current situation without her, of that I have no doubt.
To hell with cancer - we have lives to be getting on with.
Thanks for all the kind words and encouragement.
They say that cancer affects everybody directly or indirectly at some point in their life.
It's a beautiful sunny day here today and I don't have to think about cancer or hospitals for the next 11 days. After lunch we will go for a walk in the countryside before meeting up with some chums. There will be banter and laughter. Life is good.
They say that cancer affects everybody directly or indirectly at some point in their life.
It's a beautiful sunny day here today and I don't have to think about cancer or hospitals for the next 11 days. After lunch we will go for a walk in the countryside before meeting up with some chums. There will be banter and laughter. Life is good.
13/11/2018
Chemo session number 9. My session was postponed by a day, I saw a different oncologist and finally got to discuss my MRI scan results. The verdict on the colon was that it was more likely that I had developed a polyp close to the tumour, rather than the tumour growing, although I suspect that they would need to do another biopsy to be absolutely sure. Also confirmed was the presence of 1 small (2mm) lesion on each of two vertebrae. I think the adjustment to the chemo meds was designed to address this.
Chemo session number 9. My session was postponed by a day, I saw a different oncologist and finally got to discuss my MRI scan results. The verdict on the colon was that it was more likely that I had developed a polyp close to the tumour, rather than the tumour growing, although I suspect that they would need to do another biopsy to be absolutely sure. Also confirmed was the presence of 1 small (2mm) lesion on each of two vertebrae. I think the adjustment to the chemo meds was designed to address this.
Thanks to all the recent posters for contributing and for your kind thoughts.
For those of you undergoing treatment, I wish you all the very best.
Bevacizumab
Calcium Folinate
Oxaliplatin
Sessions 7-12
Irinotecan
Calcium Folinate
Fluorouracil
None of these names means a great deal to me, and I have to defer to the expertise of the specialists but from a quick google it seems that they are focussing mainly on the colon. Having said that, I think that some or all of these may be used to attack other tumours too. I will try to get more information from the oncologist next time.
For those of you undergoing treatment, I wish you all the very best.
m4tti said:
Have they determined whether you are a candidate for pembrolizumab.
This has not been specifically mentioned. Sessions 1-6 comprisedBevacizumab
Calcium Folinate
Oxaliplatin
Sessions 7-12
Irinotecan
Calcium Folinate
Fluorouracil
None of these names means a great deal to me, and I have to defer to the expertise of the specialists but from a quick google it seems that they are focussing mainly on the colon. Having said that, I think that some or all of these may be used to attack other tumours too. I will try to get more information from the oncologist next time.
26/11/2018
Chemo postponed again for a week due to low white cell count. It seems to be a fine juggling act to try and attack the tumours without destroying too many white cells. I will have another blood analysis on 3rd December after which they plan to give me a reduced dosage of chemo.
I am still having daily injections of blood thinner, this will continue into the New Year.
I also had another good talk with the oncologist who confirmed that the regime I am on is designed as a whole body treatment, rather than concentrating on the colon. He also told me that colon cancer would have been transmitted to my liver in my bloodstream rather than my lymphatic system.
Chemo postponed again for a week due to low white cell count. It seems to be a fine juggling act to try and attack the tumours without destroying too many white cells. I will have another blood analysis on 3rd December after which they plan to give me a reduced dosage of chemo.
I am still having daily injections of blood thinner, this will continue into the New Year.
I also had another good talk with the oncologist who confirmed that the regime I am on is designed as a whole body treatment, rather than concentrating on the colon. He also told me that colon cancer would have been transmitted to my liver in my bloodstream rather than my lymphatic system.
JumboBeef said:
All the best OP.
I had bowel cancer this year, 2x ops and sepsis which nearly did me in. Now cancer free and I keep my fingers crossed you will be too one day soon.
Thank you, and congratulations. I don't relish the thought of bowel surgery but it is obviously a possibility in the future.I had bowel cancer this year, 2x ops and sepsis which nearly did me in. Now cancer free and I keep my fingers crossed you will be too one day soon.
mjb1 said:
I've had some similar symptoms as the op for the last 7 months but ignored them hoping it'd pass. Finally got an appointment to see my GP tomorrow, but dreading it now.
Best wishes to you, mjb1, I hope it turns out to be nothing.A plea to everyone: please don't ignore symptoms that persist, however minor they may seem to be. Men tend to do this but it's not a sign of weakness to get yourself checked out.
3/12/2018
27/12/2018
I haven't posted for a while since there has not been much to tell. I have now had chemo sessions 10 & 11, the latter postponed for 10 days at my request. Session 12 is scheduled for 14th Jan after which I will have another CAT scan.
I have had some minor back discomfort lately which I suspect is due to my body becoming accustomed to fentanyl. Otherwise I have been feeling pretty good.
To all of you who have been having health issues or have been receiving medical treatment this year I wish you all the very best for 2019. Stay strong, stay positive & take the best possible care of yourselves.
27/12/2018
I haven't posted for a while since there has not been much to tell. I have now had chemo sessions 10 & 11, the latter postponed for 10 days at my request. Session 12 is scheduled for 14th Jan after which I will have another CAT scan.
I have had some minor back discomfort lately which I suspect is due to my body becoming accustomed to fentanyl. Otherwise I have been feeling pretty good.
To all of you who have been having health issues or have been receiving medical treatment this year I wish you all the very best for 2019. Stay strong, stay positive & take the best possible care of yourselves.
14/01/2019
21/01/2019
Chemo session number 12 on the 14th was postponed again due to low white cell count but went ahead on the 21st.
CAT scan scheduled for 28/01/2019.
I had another discussion with the oncologist about my back pain, which has increased since the beginning of January. Following this he prescribed a course of anti-inflammatory tablets, higher-dose fentanyl patches (now 100µg/hr) and fentanyl lozenges (133µg dissolved slowly under the tongue) to be taken as a supplement in the event of high pain levels.
21/01/2019
Chemo session number 12 on the 14th was postponed again due to low white cell count but went ahead on the 21st.
CAT scan scheduled for 28/01/2019.
I had another discussion with the oncologist about my back pain, which has increased since the beginning of January. Following this he prescribed a course of anti-inflammatory tablets, higher-dose fentanyl patches (now 100µg/hr) and fentanyl lozenges (133µg dissolved slowly under the tongue) to be taken as a supplement in the event of high pain levels.
4/02/2019
The oncologist went over the scan results. Put simply, the colon tumour has enlarged slightly and the other tumours are unchanged. I was originally rather disappointed that there had been no apparent response to the 2 different chemo regimes that had been tried, but further discussion and a little time leads me to believe that progress has indeed been made; my cancer has effectively been held in check and, had I not received any treatment since June, it would likely have advanced very significantly.
The scheduled chemo session was postponed to allow time for the cancer committee to meet & discuss my case.
The oncologist went over the scan results. Put simply, the colon tumour has enlarged slightly and the other tumours are unchanged. I was originally rather disappointed that there had been no apparent response to the 2 different chemo regimes that had been tried, but further discussion and a little time leads me to believe that progress has indeed been made; my cancer has effectively been held in check and, had I not received any treatment since June, it would likely have advanced very significantly.
The scheduled chemo session was postponed to allow time for the cancer committee to meet & discuss my case.
11/02/2019
Chemo session number 13. The drug mix is adjusted including a higher dose of one of the meds. Sessions will now last 5-6 hours, a long time to be sitting in a chair but taking a good book and Mrs LS's iPad helps pass the time.
The anti-inflammatory tablets and increased dosage of fentanyl have been working well, reducing high pain levels that I often get shortly after getting out of bed in the morning.
After 5 more sessions I will have another CAT scan. It would be great to see some tumour shrinkage but if things continue to be held in check I will be happy enough.
Chemo session number 13. The drug mix is adjusted including a higher dose of one of the meds. Sessions will now last 5-6 hours, a long time to be sitting in a chair but taking a good book and Mrs LS's iPad helps pass the time.
The anti-inflammatory tablets and increased dosage of fentanyl have been working well, reducing high pain levels that I often get shortly after getting out of bed in the morning.
After 5 more sessions I will have another CAT scan. It would be great to see some tumour shrinkage but if things continue to be held in check I will be happy enough.
lord trumpton said:
This thread is extremely sad yet great all in one.
I say great - I mean this to be that you are sharing things, getting things out, talking about it and not suffering in relative silence.
You sound like you are blessed with a wonderful wife. How's she coping?
I ask because I went through a tough time health wise a few years back and she was my rock - until one day where she broke down and it all came flooding out about how hard it wa to stay strong for me. That pressure to put on a brave front finally got to her. I wished at the time I'd stopped to think and ask rather than assume she was made of steel. Luckily I'm OK and so is my wife.
With regard to the smoking - did this play a role do you know? I just assumed smoking was lung cancer related.
Thanks for taking the time to post, Lord TI say great - I mean this to be that you are sharing things, getting things out, talking about it and not suffering in relative silence.
You sound like you are blessed with a wonderful wife. How's she coping?
I ask because I went through a tough time health wise a few years back and she was my rock - until one day where she broke down and it all came flooding out about how hard it wa to stay strong for me. That pressure to put on a brave front finally got to her. I wished at the time I'd stopped to think and ask rather than assume she was made of steel. Luckily I'm OK and so is my wife.
With regard to the smoking - did this play a role do you know? I just assumed smoking was lung cancer related.
This diary started out as a simple record on paper of treatment dates, hospital visits, symptoms and the various medications prescribed, just so I could keep track without having to commit these things to memory. Once I decided to post on here it turned into an opportunity to add my thoughts and to share my personal experience in the hope that some people might find it interesting. I don't really think of it as therapeutic.
You are correct - I have indeed been blessed. Mrs LS has enormous strength that belies her diminutive size. Having said that, I'm sure that she must be very frightened by what the future will bring; it would be unnatural not to be. We agreed from the outset that we would remain positive no matter how bleak things appeared to be and we have managed to do that so far. I have also encouraged her to spend time with her friends, to give her a break from running around after me and to have the opportunity to talk to them about things that she might prefer to do away from home.
As for smoking, there is a suggestion that it is one of many possible contributory factors with regard to colon cancer, but I think it's very difficult to be sure, or even if there is a specific cause in any particular case. There have been a few instances of cancer in both sides of my family so genetics could have played a part or it could just be bad luck.
lord trumpton said:
I hope things stay steady for you and that you smash this crap from your body.
Thank you. Most days I feel OK and I have come to look forward to my chemo sessions as I visualise each drop of medication going to work.25/02/2019
13/03/2019
Sessions 14 & 15. The nurses offered me the use of a private room with a day bed so that I would be more comfortable, this was hugely appreciated. They have always been compassionate, friendly & thoroughly professional and work non-stop for hours on end. I could not ask for more.
Session 14 started at 3pm and we did not get home until midnight, so I asked if we could get started earlier in the day; not a problem - subsequent sessions were rescheduled for Wednesday mornings.
The blood test prior to chemo on 13 March revealed fairly severe anaemia so I was told that I would be given a blood transfusion afterwards. 6 hours of chemo, 3 hours of transfusion, 1 hour consultation & blood testing and 2 hours travel made it another very long day. On the plus side, a couple of secondary indicators included in the blood analysis suggested that the newest regime seems to be attacking the tumours more effectively. We will await confirmation from the next CAT scan, but my oncologist seemed to be very encouraged and it has given us cause for cautious optimism that we are closer to finding the mix of medication that works best for me.
Of additional concern is weight loss. Thanks to some fungal infection and soreness in my mouth I have been finding it difficult to eat sometimes and my weight has now fallen to below 60kg. I am trying to boost my calorie intake with high-energy milk shakes and anything we can find that is easy to eat or drink and is calorie-rich without being full of sugar. I have also been wondering about the powders popular with bodybuilders but imagine they are high protein rather than high energy, and I probably shouldn't be taking in a lot of protein right now.
Finally, I forgot to mention earlier that I had discussed with the oncologist the possibility that my body was becoming accustomed to fentanyl, but he was adamant that this is not the case.
I have had no misgivings about taking on more arduous treatment in the hope that it will be of benefit. I do have back pain and other discomforts to deal with during each 14-day cycle but they have become manageable and I still have enough good, low pain days each fortnight to be able to go out for meals and see friends as often as I am able.
At the risk of repeating myself, I hope that any of you dealing with illness and medical treatment all the very best.
13/03/2019
Sessions 14 & 15. The nurses offered me the use of a private room with a day bed so that I would be more comfortable, this was hugely appreciated. They have always been compassionate, friendly & thoroughly professional and work non-stop for hours on end. I could not ask for more.
Session 14 started at 3pm and we did not get home until midnight, so I asked if we could get started earlier in the day; not a problem - subsequent sessions were rescheduled for Wednesday mornings.
The blood test prior to chemo on 13 March revealed fairly severe anaemia so I was told that I would be given a blood transfusion afterwards. 6 hours of chemo, 3 hours of transfusion, 1 hour consultation & blood testing and 2 hours travel made it another very long day. On the plus side, a couple of secondary indicators included in the blood analysis suggested that the newest regime seems to be attacking the tumours more effectively. We will await confirmation from the next CAT scan, but my oncologist seemed to be very encouraged and it has given us cause for cautious optimism that we are closer to finding the mix of medication that works best for me.
Of additional concern is weight loss. Thanks to some fungal infection and soreness in my mouth I have been finding it difficult to eat sometimes and my weight has now fallen to below 60kg. I am trying to boost my calorie intake with high-energy milk shakes and anything we can find that is easy to eat or drink and is calorie-rich without being full of sugar. I have also been wondering about the powders popular with bodybuilders but imagine they are high protein rather than high energy, and I probably shouldn't be taking in a lot of protein right now.
Finally, I forgot to mention earlier that I had discussed with the oncologist the possibility that my body was becoming accustomed to fentanyl, but he was adamant that this is not the case.
I have had no misgivings about taking on more arduous treatment in the hope that it will be of benefit. I do have back pain and other discomforts to deal with during each 14-day cycle but they have become manageable and I still have enough good, low pain days each fortnight to be able to go out for meals and see friends as often as I am able.
At the risk of repeating myself, I hope that any of you dealing with illness and medical treatment all the very best.
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