261. Clear As Mud

Warning - miseryfest.

Tonight I start cycle 15 of the delightful capecitabine. I have no real idea of what is going on but am receiving quite conflicting messages.

Yes, the cancer is showing progression. The tumour is causing more swelling in the eyelid and the skin mets are hardening and spreading a little. I asked what will happen eventually and he said my eyelid will swell to the point where it’s permanently closed, which obviously will affect my eyesight. Surgery is rarely offered at Stage 4 and surgery on this would be too risky. Heigh ho. The slowness of the spread is unusual in a triple negative breast cancer, which is usually ahead of the chemo!

Yes my blood markers last time showed no cancer activity, being their lowest ever at 17,  and my tumour markers had dropped back to their lowest level, at 6. 

Yes, there is an apparent contradiction but we must go by the tumour, not the markers, as it may well be that the new cells are not the same as those measured buy the tumour marker to date. He’s put me down (or rather, my biopsy sample) for a test for a further mutation which 1/100 have.

Conclusion : capecitabine has stopped working in that it’s allowing some growth BUT capecitabine is still containing the spread. 

We discussed the side effects - bowel problems occasionally, constant fatigue. I asked if I should be trying harder, pushing through the fatigue as we were advised in the Moving Forward course and he said no. I shouldn’t underestimate the reality of chemo-induced fatigue and should go along with it. If I need a day of sleep, have a day of sleep. I pointed out that this was now most days but he said bear with it.

SO, I am to continue with capecitabine despite the fact that it’s no longer working so well. He pointed out that I looked well and I am well (!!) and we should wait until I feel less well before moving onto an IV treatment “because there are so few treatments available to me. If we move too quickly, we may run out of treatments.” Hmm, that rather undid any positivity I’d gained from the consultation so far.

My vit D levels are very good (not sure what difference it makes) but when I asked about IV vit C which some women are having, he’d not heard of it! He asked who was providing it and seemed surprised when I said their oncologists. I’m wondering now if they live in France or the USA, where things are done differently. That might explain it. He noted it down to follow up but I’m not holding my breath. He also talked about sending my biopsy off to see if I qualify for a new trial he is setting up at St James’s for a new, targeted drug which has fewer side effects. 

I do know what he means. There are women in excruciating pain, women with mets in almost every organ of the body, and I ‘just’ have my little tumour and a few skin mets that cause no problem.  What makes me unwell are the side effects of the chemo. My last CT scan threw up nothing new, no sign of spread, which is a bit unexpected if cape has stopped working. So we wait another three weeks, then he’ll put me down for another CT scan. I asked about the PET scan again and he said it wasn’t necessary. I’m told a PET scan lights up every malignant cell in your body so, unless it’s the same problem as with the other scans - my mets are too near the surface to be picked up and my tumour hides away - I’m sorely tempted to have one done privately. I just have this feeling that, just as my eye was diagnosed a year later than it should have been, something else may be going on that isn’t showing up.

Maybe I’m just going though a bad patch. I slept most of Saturday and most of yesterday. I think my pjs are becoming my second skin (without mets). I felt fine on Friday but suddenly a depression hit me on Saturday and, to be honest, you’d think today was my first treatment. I actually feel nervous (not quite anxious) about it.

We stopped off at Maggie’s for a bit and, as they do, a counsellor approaches and welcomes you, tells you where to get a cuppa and asks if she can help. I said YES, maybe she could. We needed to talk together about what’s going on and it’s just not happening. What followed was 5 minutes of me scene-setting, then an hour where I just let Dennis talk. The floodgates opened slowly, but they opened and, although Dennis blocked each of her suggestions, it was clear at the end that he was thinking a bit differently.  I have to say I was close to tears at times when I heard what he was saying but, amazingly, I didn’t interrupt. We both felt it was worthwhile time. However, nothing has changed. I still can’t say how I feel for fear of worrying him and he still won’t do his will or LPAs.

Ugh, the tablets have been delivered.