Chapter 4: Progress

“CT scans were carried out at periodic intervals to examine whether the tumour had reduced in size to establish whether chemotherapy was working. The first CT scan after the start of chemo was carried out in mid-January and a second in late March.”

19 January 2017

Dear friends

I had a CT scan on Tuesday to find out whether the tumour has changed size. I just spoke to Jan (the Macmillan nurse) who told me that the notes record a “significant reduction” in the size of the tumour and that there is less cancer in the lymph nodes. Also, the blood clot on the lung that appeared in December is going. So, Donald, you’re f***ed.

Nigel

24 March 2017

Dear friends.

Some of you will know that I’ve been unwell for a few weeks.  I’ve had (and still have) very unpleasant gastro symptoms which have left me exhausted. I’ve been too unwell to have my 6th and final chemo cycle.

I will be admitted to hospital sometime today for a laparoscopy – ie keyhole surgery for an internal examination and biopsy. I don’t know whether the surgery will be carried out today, this weekend or another time.

The reason for the surgery is that a CT scan I had on Tuesday found shadows which might be cancer. The surgery is to determine whether these shadows are cancerous as CT is unable to do this. I’m not sure whether/how the gastro symptoms and the shadows are linked but presumably the laparoscopy will help answer this. It’s possible I’ll also have a colonoscopy.

They’re not sure for how long I’ll be admitted and diagnosis/treatment/prognosis will depend on what, if anything, they find.

Obviously I didn’t expect to be here, especially after such a promising mid-point CT scan. To say the least, it’s disappointing and I hope the shadows aren’t cancer. It now feels like a very different game.

Love

Nigel

24 March 2017

Dear friends

Plans have changed. I just took a call from one of the haemotologists. Surgeons think the surgery is too risky so that plan has been abandoned. I will still be admitted today to get my general health improved (including the gastro problems) so that I can handle a different type of chemo regime. The doctor is not sure when that will start but probably next week. The haemotologist also told me what the CT found. This is that the original tumour has increased slightly in size but there are no shadows or intimations of cancer elsewhere. The doctor referred to this as a sign of the ‘progression of the disease’. It all boils down to 4-6 months of chemo and the hope of remission.

Love

Nigel

25 March 2017

Dear friends

I’m sending this text to a small number of friends to summarise the latest. I’m afraid I going to be pretty blunt as I’m not keen on pussying footing around. I’ll send a more detailed text to more people next week once I’ve checked my facts with a doctor.

I saw one of the haemotology consultants earlier today. He laid things very frankly on the line. Things are pretty serious. It all boils down to a)next week starting new chemo and stem cell treatment to end in June /July b)a 50% chance of living two years without cancer if there’s no tumour at the end of treatment and a fairly normal life expectancy thereafter and c)its curtains if treatment doesn’t begin to work after the first two chemo cycles or if there’s still a tumour at the end of the treatment.

It’s sobering stuff. We should hope for the best but be prepared for the worst.

Nigelx

27 March 2017

Dear friends

I was completely misinformed about the CT results when I was told last week that the cancer might have spread. I now know that there is no sign of cancer elsewhere apart from the original tumour. The problem is that the tumour has slightly grown in size from its reduced size in January. I’ve been told by  a consultant that this now means that matters are very serious. I’m going to be frank in this email in explaining developments, treatment and prognosis. Please forgive me if you find any of it shocking.

The keyhole surgery has been abandoned as the surgeons thought it too risky. But I was still admitted to hospital on Friday to help improve my health in readiness for new chemo and to have a colonoscopy tomorrow to investigate my gastro symptoms. If the colonoscopy doesn’t find infection or anything else untoward, what they call ‘salvage chemo’ will start this week.  This is a different cocktail of drugs to my previous chemo, it will be administered every 3/4 weeks and after the second cycle a CT scan will be taken. If the tumour is responding I have a third cycle. I then get a week’s intensive chemo followed by stem cell treatment.  I spend 3 weeks in hospital for this latter treatment after which a CT scan will be taken to identify whether the chemo has worked. This regime will be completed around June/July. The consultant also told me that I’ll need 3 or 4 months recovery as the treatment will leave me exhausted.

The most sobering issue is how my life expectancy has changed. If the tumour is destroyed after this treatment, my two year disease free survival chances are 50%. (The equivalent chances with the previous chemo were 75%). In Plain English, this means that I have a 50:50 chance of being free of cancer for the first 2 years after chemo has finished but only if the tumour is destroyed by the chemo. Thereafter, I can look forward to a more or less  normal life expectancy if I survive for these first 2 years without cancer. The prognosis  is very poor if the tumour hasn’t disappeared at the end of treatment.  The prognosis is also very poor if the tumour doesn’t respond after the first two cycles. By very poor, I mean its curtains.

In spite of everything, my spirits are in reasonably good shape – I’m focussing on positive outcomes, taking each stage as it comes and I give relatively little head space to the worst case. My health has improved since being in hospital to the extent that I have more energy and my appetite has improved (I even enjoy hospital food!).

That’s about the sum of it but feel free to ask any questions. And thank you for your support.

Love

Nigel

27 March 2017

Dear friends

There’s more prognosis news that hasn’t exactly got me jumping for joy.

My chances of responding positively to the second round of chemo drug injections are just 20%. (By positive, I mean the tumour must show signs of shrinkage). A positive response is needed to continue with the treatment as described in my previous text. I will have had the second lot of injections (known as a cycle) in about 2 months time.

If I don’t respond positively, I’m likely to be offered to participate in a clinical trial that has shown promising results. So it’s not definite curtains as I had previously said.

Love

Nigel

28 March 2017

Dear friends

I realise I’m giving you some stats information that to geeks like me are fascinating but to others might be less than clear and perhaps might easily be misunderstood.

At the risk of teaching you to suck eggs, it goes like this…

  • Doctors can not make tailor made predictions about whether an individual patient will respond to treatment or predict their life expectancy. The methods don’t exist to make these predictions.
  • They can only estimate a patients chances based on how patients in general respond to treatment or for how long they live.
  • These are called population estimates. So, for example, they know that half of all the population of patients given the treatment I’m about to receive with my type of cancer will live for 2 years without cancer. Cancer will return for the other half in these 2 years.
  • The stats they’ve given me and that I’ve passed to you are population estimates. They are not a prediction tailored to my specific cancer and as such are relatively crude. Never the less they are a very reasonable guide to my chances.

I hope this helps.

Love

Nigel

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s