health news

I have finally heard from the Cancer drug fund. The news came through at about 5-45 this evening (Monday). The monoclonal antibody has been approved and I should be able to get it this week.

First I have arranged for my ascites to be tapped this week which should be able to relieve me from the abdominal pressure that I have been increasingly suffering from.

Health report

I am waiting at the moment to hear whether I will be able to have the monoclonal antibody cetuximab. I am cheered by the finding in European Journal of Cancer that response to cetuximab does not depend on previous response to irinotecan, since my response to that drug was not splendid,

I quote, "these findings indicate that the efficacy of irinotecan plus cetuximab in MCRC patients with wild-type KRAS did not differ by previous sensitivity to irinotecan".

I have been waiting for 2 weeks for news and I rang the oncologist this morning to ask him to chase it up.

I am up one day and down the next. Partially, it is the dexamethasone that makes me emotionally labile. I had a weepy day yesterday as I contemplated the things I had left undone. At the end of Schindler's List, Liam Neeson has a scene where he looks at his luxury car and his gold ring and thinks of how many more Jews these could have bought. "I could have done more," he exclaims.

That is how I felt. I told this to Dr John when he visited and he reassured me. None of us can ever do enough. We mustn't reproach ourselves.

Today I am much more cheerful. I went out for the first time in 2 weeks and bought some flowers for my wife. The Scripture tells us not to be weary in well-doing. The Restaurant where we had the reception for my daughter's wedding 2 years ago has just gone bankrupt; I guess they did not market aggressively enough and charged too little. Another shop in our parade has closed. I was glad to patronize the little florist shop. It is a splendid feeling to be able to help out. Some of us with savings should be spreading our wealth around at the present time.

In a rash moment I had bought tickets to see my granddaughter in a school musical tomorrow, but it is a two hour drive and I shall not be well enough to go. Let's hope that the cetuximab will work and I will be able to do these sorts of things again. If I get any sort of response I shall seize the day.

Health update.

I have not been very well since I came off the Capecitabine. I did not have the recovery that I had had last time. It will be at least 3 weeks until I get the monoclonal antibody. I reasoned that I ought to have some maintenance therapy to tide me over the gap and decided after two weeks without any treatment to take half dose Capecitabine. This was a mistake. The abdominal pain and bloating kicked in with a vengeance.

To remedy this I have had a couple of days on clear fluids, more bed rest, dexamethasone 6mg, and I've bought some bigger shirts to accommodate my expanded waistline. Things are gradually getting better, but I shall have to start eating again soon.

Later health report

I saw the oncologist this morning. The good news first: The pulmonary embolus has full resolved on the CT scan. I had noticed that I was no longer breathless on climbing stairs. I guess this means that when my current supply of full dose Clexane runs out I can switch to a prophylactic dose.

There has also been a marginal fall in my CEA from 24 to 22.

However, there has been an increase in my ascites and in the omental disease. In addition the lesion that was suspicious in my liver is a little bit more suspicious.

This means that the chemotherapy has not been successful. Unfortunately (or perhaps fortunately) the clinical trial that I was being booked into has closed, so I move on to monoclonal antibody therapy.

This means either Cetuximab or Panitumumab. Cetuximab is indicated for the treatment of patients with epidermal growth factor receptor (EGFR)-expressing, KRAS wild-type metastatic colorectal cancer (mCRC), in combination with chemotherapy, and as a single agent in patients who have failed oxaliplatin- and irinotecan-based therapy and who are intolerant to irinotecan. The positive opinion from the Committee for Medicinal Products for Human Use (CHMP) was received for mCRC 1st line use in May 2008.

Many clinical trials have been conducted to investigate the efficacy of cetuximab (Erbitux) in metastatic colorectal cancer (mCRC) and there is increasing evidence to support the use of biomarkers, such as KRAS, to predict tumor response to anti-EGFR therapies. Two large clinical trials of cetuximab, OPUS and CRYSTAL, have recently been published, and have provided further evidence that cetuximab significantly improves response rates and disease free survival rates in mCRC patients with KRAS wild-type tumors.

Panitumumab was approved by the U.S. Food and Drug Administration (FDA) for the first time in September 2006, for "the treatment of EGFR-expressing metastatic colorectal cancer with disease progression" despite prior treatment. Panitumumab was approved by the European Medicines Agency (EMEA) in 2007, and by Health Canada in 2008 for "the treatment of refractory EGFR-expressing metastatic colorectal cancer in patients with non-mutated (wild-type) KRAS".

I have wild type KRAS.

This is the way it works. My oncologist will apply to the Primary Care Trust for one or other of the drugs, but because they are not NICE approved they will be refused. There will be an automatic referral to the Cancer Drugs Fund, which is a special fund of £200 million set aside by the government for situations like this. It is currently underspent, so the belief is that it will be approved withing 3 weeks. My oncologists tells me that all the requests he has made have been approved so far.

What it means is that I have at least a 3-week holiday from chemotherapy in which I hope to be able to improve.

Health update

I see the specialist today, expecting the results from my latest scan and CEA measurement. I have just finished my week off chemotherapy and was disappointed that I did not see the recovery that I had been expecting. Today is the first day that I have begun to feel better. Ideally, I should prefer it if they allowed me another week's recouperation befor I start the next course.

I was very distended, very constipated and very sore all last week but in view of the fact that I have felt better this morning, I suspect that it was treatment rather than disease that was causing the symptoms.

Health update

I have a week off chemotherapy and I am feeling better. Last week we had some sunshine and I was able to go for a walk on the beach at respectively Bournemouth, Poole and Highcliffe, depending of where the cusp of the cold front encroaching on the British Isles was exactly situated; 15 minutes walking and 30 minutes sitting in the sun.

I saw the oncologist this morning and had the good news that my carcinoembrionic antigen had fallen. It had always been in the normal range until before the last lot of chemotherapy began, when it had risen to 32. After this course it has fallen to 24 which is obviously in the right direction. Enough anyway to encourage them to restart the same type of chemotherapy tomorrow.

I am due a CT scan this afternoon. I met a new registrar this morning; a very pleasant young woman from Bangalore.

Why I am quiet.

My time has mostly been spent drowsing. The combination of chemotherapy and pain-killers has kept me from blogging.

silence for a while

The long time spent away from my computer is not entirely down to ill health. The fan disintegrated on my lap top and the hard drive overheated and broke. I am now pretty well restored to function, though I haven't worked out why my wide screen monitor isn't working. I did have a period of poor health after restarting the chemotherapy, but that lasted a day or two and was largely due to an inadvertent overdose of the anti-emetic levo-promazine. I should have only taken a quarter of a tablet rather than a whole one.

To add to my woes, my TV went down so I have not had much to detract me; apart from arguing with the cable company on the telephone.

Anyway I am back up to speed again and should now be able to start blogging again.

Away from my desk

I'm sorry not to have communicated recently. but I have been very ill. I had to reduce my dose of Capcitabine because of toxicity and initially this improved the side effects, but only for a day and then fatigue and abdominal pain returned with a vengence; so much so that I could not take the full 14 day course. Even after stopping the toxicity continued and I had to stop eating. On water alone by mouth plus Buscupan and Co-codomol the symptoms gradually settled and I woke at 4 am today feeling better. I am due to start the same regime next Monday.

Thanks for all the good wishes.

Dose reduction

No blogging for the past few days because I have been so unwell. Yesterday, I was aslep for 20/24 hours. It was only pain or diarreah that woke me up. I phoned my oncologist theis morming and he suggested a dose reduction. My chemo-brain was so bad that I could not work out the dose of capecitabine I was taking. 500 mg x 10 was beyond me.

I have reduced the dose by 20% and today I have felt much better. I have actually sat for an hour in the garden under a clear blue sky; the first time I have been outside for many days.

Healthcheck - sleepiness

In me the chief side effect of this new chemotherapy seems to be tiredness. I spent much of the weekend asleep, so no blogging. I am still slogging through the book on Bayesian statistics, so perhaps that is part of the reason, but it is a particularly relaxed form of sleep so I can't complain.

Almost for the first time in my life, I feel no compulsion to do anything. It seems that all my life I felt guilty if I wasn't active, making things happen in a typically alpha-male sort of way. These days it doesn't seem to matter. I drop of to sleep, dream away and then wake up for a bit. Then I fall asleep again. I am quite happy about it.

Health report

I have completed day 1 of my chemotherapy - 13 more to come. I acually feel better than before I started; probably because my bowel was acting in slow motion (boom!boom!) and now is more free flowing.

This treatment consists of a 5 minute injection then 5 tablets twice a day for 2 weeks. The side effects are mainly associated with the gastrointestinal tract, which I won't mention further apart from saying that a computer friend has described it as the rapid downloading some software.

My bruises from the fall in the garden (I mean my garden, not the Garden of Eden) are gradually healing; they are at the less painful but more colorful stage. Still, I have to take regular painkillers.

Convalescing

How have I been spending my time while convalescing? I have been watching films, sleeping and reading.

I am still ploughing (plowing?) through the book on Bayesian statistics, but that has been a little heavy. I have also decided to attack 'A Game of Thrones' the first novel in George R. R. Martin's best-selling A Song of Ice and Fire series of fantasy novels. I believe it is being serialized on TV, but that is on one of the few TV channels I don't have. Still I have always preferred the book to the movie.

I did watch a spy thriller on BBC TV last night called 'Page 8'. For a thriller it was rather gentle but the cast was stellar. Perhaps it could have done with a real film director. David Hare's strong views about rendition failed to allow the equally valid view that fighting bad guys with one hand tied behind our back leads to the triumph of evil.

I finally got around to watching the movie "The time traveller's wife". I read the book some time ago and preferred it to the film. Brad Pitt owned the rights and his mate Eric Bana starred as the beefcake. It was less complicated than the book.

I have also watched The Apostle starring Robert Duvall and one to stand alongside Tender Mercies which I saw a long while ago.

Miss Pettigrew lives for a day is also a heartwarming RomCom starring Frances McDormand and Amy Adams and set in a London just before the second World War where night clubs and West End musicals are all that a young girl thinks about until she meets a couple of survivors from the first world war, who takes life a little more seriously.

Mrs Palfrey at The Claremont stars Joan Plowright as an elderly widow signed in as a long-term resident at a private hotel in London for the genteel poor. She expects her grandson to call but he never does. Instead after a fall she is adopted as a grandmother by a nice young busker on the London underground. As the friendship blossoms she finds she has more in common with him than with her own family.

Apart from the films, I have watched to football. Already after 3 games Manchester United are top of the league and Manchester City second. Both had big victories over London clubs at the weekend with United's drubbing or their closes competitors over the past 20 years, Arsenal, sensational. They won 8-2. I should h8-2 be an Arsenal supporter at present!

Healthcheck

I have been pretty ill all week. The fall I had last week really knocked the stuffing out of me and left me with lots of bruises. I have spent the week mostly lying still and sleeping, but there are signs of improvement. The bruises are changing color and the swelling has been going down. Part of the problem is that I am fully anticoagulated and I have been bleeding from the LMW heparin injection sites.

I lost 7 pounds in weight, but I have regained 5 of them. The breathlessness is less but still a problem on climbing stairs.

I restart chemotherapy on Tuesday week.

Health report

My father died of a very similar pulmonary embolus to mine 33 years ago. I had diagnosed the problem and got him admitted to the local hospital for appropriate treatment. Unfortunately, the local physician did not accept my instructions and my father died the next day. The physician was sorry afterwards but that horse had bolted.

My embolus was silent, but my own fault in that I didn't was to be on lifetime injections of clexane. I should never have stopped them. The embolus has left me breathless after walking 50 yards on the flat and won't resolve for some time. I am reducing the steroids again since I think that the proximal myopathy is only making things worse.

I had a consultation with the oncologists yesterday and while the clinical trial of cetuximab versus a TKI attacking the the EGRF receptor is on, it has to be entered within 6 weeks of failing chemotherapy, so I have to have another regimen before I am eligible. I therefore need to start capecitabine and mitomycin C. Here is the abstract recommending it.

Protracted venous infusion 5-fluorouracil (5FU) combined with mitomycin C (MMC) has demonstrated significant activity against metastatic colorectal cancer. Owing to potential synergy based upon upregulation of thymidine phosphorylase by MMC, the combination of capecitabine and MMC may improve outcomes in irinotecan-refractory disease. Eligible patients with progressive disease during or within 6 months of second-line chemotherapy were treated with capecitabine (1250 mg m-2 twice daily) days 1–14 every 3 weeks and MMC (7 mg m-2 IV bolus) once every 6 weeks. A total of 36 patients were recruited, with a median age of 64 years (range 40–77), and 23 patients (78%) were performance status 0–1. The objective response rate was 15.2%. In all, 48.5% of patients had stable disease. Median failure-free survival was 5.4 months (95% CI 4.6–6.2). Median overall survival was 9.3 months (95% CI: 6.9–11.7). Grade 3 toxicities were palmar-plantar erythema 16.7%, vomiting 8.3%, diarrhoea 2.8%, anaemia 8.3%, and neutropenia 2.8%. No patients developed haemolytic uraemic syndrome. Symptomatic improvement occurred for pain, bowel symptoms, and dyspnoea. Capecitabine in combination with MMC is an effective regimen for metastatic colorectal cancer resistant to 5FU and irinotecan with an acceptable toxicity profile and a convenient administration schedule.

I found the report on the pulmonary embolus shocking and depressing as if the Angel of death had passed over my lintel and seen the mark of safety there; yet I was extremely grateful to be spared. I am humbled by the fact that with all my knowledge and precautions, I made a wrong decision about prophylactic anticoagulants. I can really believe that someone is watching out for me. I am writing this at 5 am; being alert at that time for the first time in several days. Perhaps that is a sign of things (or my my mood improving).

Health again

Yesterday I had an attack of subacute obstruction - probably cause by a bowl of tomato soup and two slices of bread. I increased my steroids and used a hot water bottle and by the morning it had settled. Today I have been on clear liquids. It does seem as though I shall have to have some more treatment soon.

Health Report following CT scan

I had my CT scan this morning and this afternoon had a phone call to attend the hospital. The most serious finding was that I have had a large volume pulmonary embolus straddling the two pulmonary arteries. Although there is still blood flow around the embolus, it does explain why I have been breathless for the past few days and my general fatigue. Looking at it shows that there has been a genuine emergency and justifies my going back on full dose Clexane, which I have already started this evening.

The rest of the scan shows no liver metastases and no change in the size of the mass where the stricture is, but there is a significant thickening of the omentum, which will account for the bloating and discomfort that I am feeling. I think it is probably time that I restarted my treatment and it looks as though the most likely option id a clinical trial comparing cetuximab and an EGRF TKI.

Health check. Nordic Walking

This morning I went for my check with my exercise monitor. I am half way through my exercises program for cancer sufferers. It has not been as easy as I had hoped because of my great tiredness. I hope I am back on schedule with increased steroids and a diuretic to prevent peripheral edema from the water retention. My blood tests today were good with a normal Hb, WBC and platelets, fasting blood glucose and lipids though low plasma cortisol, and normal electrolytes and liver function tests apart from a borderline ALT which I have had for a very long time. My calcium was a bit high but I knew about that. My BP was 130/80 which is fine for my age.

Laura, who is supervising my exercise program, is training people in Nordic walking. This looks like the ideal exercise for people with cancer and those with bad backs.

Health update

Having enumerated all the possible explanations for my sleepiness and bloating I decided to test out the possibility that it was due to my coming off steroids. I put myself back on 4mg of dexamethasone. My tiredness has left me and the bloating has been much better. In fact I have probably overeaten today since my son and his family was with us and we ate at a restaurant.

Now I must find a way of living with the bigger dose of steroids.

Explanation versus reasons. Why am I so tired?

Doctors are good at giving explanations. I have been scratching my head over the cause of my symptoms, which are uncomfortable abdominal bloating and extreme tiredness, so that I fall asleep as soon as I sit down.

Here are some explanations:

1 It is all the result of the chemotherapy - someone told me that the side effects persist as long as the course of treatment - in my case 6 months. Someone else said it takes at least a year to get over them.

2 It is still the neuropathy caused by the oxaloplatin

3 It is the surgical effect of the anastamosis. a] it is the blind loop left by the surgery causing i)dumping syndrome; ii) excessive insulin secretion; iii) exaggerated gastro-colic secretion. b] it is sluggish flow because the narrow anastamosis. c] it is caused by bacterial overgrowth. d] it is caused by fungal overgrowth.

4 It is caused by a low potassium because I have been on steroids for so long.

5 It is steroid induced myopathy

6 It is because I am reducing the steroids

7 It is because I am anemic

8 It is all in the mind

9 I am depressed at the prospect of dying

10 I am depressed because I have retired and not found a new role

11 I have aged three years since I've had this disease and what I have are the symptoms of old age.

12 I have been fighting it long enough and I am ready to give up

13 I have a scan coming up and I am anxious

14 The cancer has come back.

You see an explanation is not the same as a reason. Without evidence an explanation is just speculation