Wondering what to make of life before the Necessary End

Let’s assume I do chemo. And let’s assume it starts in the early days of January. It should be finished by the end of May. It will then take some time to get over the immediate effects of the chemo, notably the fatigue.

Chemo may, or may not, kill the cancer cells. For the sake of this discussion, let’s assume that all the ovarian cancer cells are deemed to be gone. (Bear in mind there is no way to *know* they have gone; the CA125 blood test will merely be an indication.) Let us further assume that the breast cancers have not got any worse and that I’m not (a) in hospital getting more bits chopped out and (b) not doing any serious drugs for the breast cancers.

So let’s say that, by early July, I could do something interesting and useful. Maybe even fun. The period starting in July will hitherto be referred to as Period X.

Period X will be of uncertain duration. Period X ends when the cancer recurs. The chance of my cancer not recurring is somewhat less than the chance that I could holiday on Mars or pursue a successful career as an Olympic gymnast.

According to my gynaecological oncologist, 50% of women with ovarian cancer have a recurrence within 2 years of diagnosis. Twenty-four months minus 2.5 months that have already gone by minus 6 months chemo = 15.5 months before first recurrence. Alternatively, a study comparing various treatment regimes had a median disease-free time of 16 to 17 months. That puts Period X at only 7 or 8 months.

So the average Period X might be anything from 7 to 15 months. For me it may be less. It may be more.

After Period X comes the first recurrence of the cancer. When the cancer recurs, the second-line treatment is another round of chemo (I haven’t even 100% decided to do a first line of chemo). (An aside: I heard today about a woman who is doing her fifth line of chemo treatment. That is, she had chemo, the cancer recurred, she had chemo, the cancer recurred, she had… five times.)

So Period X starts after the first-line chemo ends and before the cancer recurs. It is therefore likely to be my best time until my necessary end.

Therefore:

1. I want to be able to do something good during this time. Like travel. Therefore, I need hair. Therefore, I want no hair loss. Therefore, I won’t do Taxol.
2. I should start planning what to do in Period X now.

Follow up: real-life stories of how long Period X has been for other women with Stage 3 Ovarian cancer.

CA-125 is a protein marker in the blood, and is measured in an ordinary blood test. It’s no use as a diagnostic tool, but it does have prognostic value. The following two studies both dealt with patients with Stage III or IV ovarian cancer.

Patients with high marker levels (greater than 100 U/ml) 1 month after the third course [of chemotherapy] had a median survival of 7 months. This should be compared with a 50% 5-year survival in patients who had 10 U/ml or less and a median survival of 22 months among patients with intermediate CA 125 levels.

O. Mogensen, ‘Prognostic value of CA 125 in advanced ovarian cancer’, Gynecol Oncol. 1992.

[After 3 courses of chemotherapy], with CA 125 levels below the cut-off [of 35 kU/I] 52% of the patients survived [for 2 years], while with CA 125 levels above the cut-off only 13% survived (p < 0.0001).

A van Dalen et al, ‘Prognostic significance of CA 125 and TPS levels after chemotherapy in ovarian cancer patients’, Anticancer Res., 1999

Further, the CA-125 level can be used to show when the cancer has “progressed” (a euphemism for “come back after you irrationally hoped that chemo had made it all go away”). “Progression” is indicated by the CA-125 level doubling from its lowest point. (Gordon J.S. Rustin et al, ‘Use of CA-125 to Define Progression of Ovarian Cancer in Patients With Persistently Elevated Levels’, Journal of Clinical Oncology, 2001.)

And it’s kind of important to know when “progression” occurs, marked by the doubling of CA-125, because Rustin & friends say that, at that point, you have a 50% chance of surviving a further 13 months.

But… the same Rustin et slightly different al concluded a study recently that considered whether patients lived longer if they started re-treatment when the CA-125 levels rose, or delayed until symptoms (pain, bloating) returned. They conclude that you may as well wait, and if you’re going to wait for symptoms to appear, why keep measuring CA125?

There is no survival benefit from early treatment based on a raised serum marker level alone, and therefore no value in the routine measurement of CA125 in the follow-up of ovarian cancer patients.

G. J. Rustin et al, ‘A randomized trial in ovarian cancer (OC) of early treatment of relapse based on CA125 level alone versus delayed treatment based on conventional clinical indicators (MRC OV05/EORTC 55955 trials)’, 2009 American Society of Clinical Oncology Annual Meeting, J Clin Oncol, 2009.

My CA-125 score today, before the first course of chemo, was 113. We wait and see.

Irrelevant trivia: 113 also happens to be (a) my house number and (b) the code for one of my favourite colours of nail polish.

Third chemotherapy treatment today. The morning followed much the same process as the first two cycles.

A friend came with me and diverted my attention for much of the time we were at the hospital. I’m really grateful for that. Last time I went alone and I got quite stressed by the whole thing. Last time, one of the nurses had covered my arm with a towel, so I’d stop looking at the IV going into my arm. This time it was much better.

I did blood tests yesterday afternoon and got the results this morning. Red blood cells down: Haemoglobin, hematocrit, red blood cell count and platelet count are all just below the normal range. White cells are just hanging in there but neutrophils are dying by the dozens and the report says a ‘mild neutropenia‘ (that means my immune system is suss; so if you’ve got a cold, bugger off!).

The good news, from where I’m sitting, is that my CA-125 level had more than halved to 43. In the next day or two I’ll try to investigate more about just where that places me in the distribution.

Now, I just wait to feel bad again. This time, having seen the pattern twice before, I can predict that on Friday, Saturday and Sunday I will feel absolutely horrible. On Monday I should start feeling better again. That’s what I have to remember through the bad days.

I don’t think I’ll ever forget this sequence of numbers. It’s my CA125 readings to date.

• 246. The day I first went to the GP, nearly 6 months ago. I’d never heard of CA125. I didn’t even realize the GP had ordered that blood test. And while she and I started to go through the results of the blood tests when I next saw her, we were interrupted for reasons I now forget, and didn’t discuss the result of this test.

  Now, of course, I know that CA125 is a tumour marker. It’s lousy as a diagnostic, but useful for prognosis. And the “normal” range is 0 to 35.

  It was only months later, when I had to back to her to get a referral, that I asked if she’d ordered that test, and what the result was at the time

• The CA125 measure probably went up between the first visit to the GP and surgery 6 weeks later. And it probably went up and down like a yo yo after surgery. I don’t know.
• 113. The day before the first chemo session.
• 104. The day before the second chemo session. This really spooked me. The measure had only fallen a tiny amount, and I don’t even know if that was significant. I read as much as I could, felt very worried, and then worried that I might be mis-interpreting what I read.

  So I rang one of my favourite people, whom I first met when he was my Stats professor about 100 years ago. I sent him two of the main articles I’d found, and asked how to interpret 104. He read the articles, and we discussed it. When he learned that my question wasn’t academic, but was about me, he went very quiet.

  I learned why the medicos don’t harper on about CA125 measures: you could do your head in reading these numbers.

• 42. The day before the third chemo session. A bit of relief. The “normal” range is 0-35, so I wasn’t in the normal range yet. But it had obviously come down and the medical oncologist said that this indicated that the cancer cells were responding to the treatment.
• 13. The day before the fourth chemo session, which is to say 3 weeks after the third chemo session. Yippee! Almost to the magical 10, which was the cut off in an old study by Mogensen that suggested that, if CA125 four weeks after the third chemo session was below 10, people had a median survival of 5 years. Over 100, and median survival was 7 months. In the middle, 22 months. I’m not quite down to his cut off of 10, but I’m not quite up to four weeks after the third chemo session, either.
• 9. Monday, the day before the fifth chemo session. Below 10. Genuinely normal. Dr Schadenfreude tells me that 9 is a measure you’d expect to see in anyone, man or woman, in the general population. It does not indicate that the chemo has got every last cancer cell. But it does indicate that the drugs are having a significant effect, and that the cancer cells are responding. If nothing else, I now know that my cancer cells aren’t resistant to the platinum drugs and that there has been some purpose in all this horror.

  By nice coincidence, my old mate the statistics professor rang today to see how I was going. So I was able to tell him this good news, and thank him for his help some weeks ago, and tell him that I wasn’t so spooked as when we last spoke.

  This low result, combined with better-than-expected blood tests (white blood cells and so on seem to have stopped declining, and have plateaued, albeit lower than the normal range), and altogether feeling better in the last week or so has lifted my spirits considerably.

• ?. I wonder what it will be before the sixth and final chemo session. And, even more, what it will be after the final chemo.