A change of plan

Right then. Where were we? Oh yes, it was the 4th April and I was due to start the third round of PCV chemotherapy but my blood platelets had fallen below the minimum level to be able to undertake chemotherapy, so I’d been sent home for a week to concentrate on growing some more.

Truth be told, I was really quite glad to have been given a week’s reprieve before starting round 3 of chemotherapy. The last dregs of flu were still clinging on, and it’d give me a chance to recover properly. But first, I needed some platelets. All of the medics agreed that there is no proven way to promote platelet growth, but if anything could do it, it would be vegetables wouldn’t it? Because a) they’re full of vitamins and that,  b) they’re always banging on about how good they are for you, like that other chancer, porridge and c) most of them are bogging.

Undeterred by rankness I pretty much ate nothing but veg for the next few days until it was time for another blood test. Needing a score of 95 10*9/L platelets to be able to have chemo, the week before I had 75. Unfortunately, the medics were right. Vegetables are all mouth and no trousers – they proved to be utterly useless.  My score had dropped further to 55. Abdul the permanently surprised Registrar told me that chemo would be a no go, but seemed not to have any suggestions about what to do next. Luckily, whilst I was waiting to be allowed to go home, Paula the Consultant Oncologist finished her appointments and decided to come up and see me on the day unit.

She arrived with a big stack of papers and a very Paula expression.  Both the expression and the papers said a change was afoot. Two things had knocked the original plan off course; knackered platelets and a mild allergic reaction to procarbazine. Either one on their own could be adjusted for and worked around, but taken together, they added up to it being more bother than it was worth to continue with PCV.  In Paula’s opinion, my body was ‘holding on to the PCV for too long’, which meant my platelet levels couldn’t rise quickly enough to meet the six week PCV schedule.  “I reckon you’re a nine-weeker, not a six-weeker” said Paula. “We’ll never be able to get this stuff in to you at the right time.”

I still don’t know if holding on to chemotherapy for too long is a good, bad or neutral thing. Let’s choose ‘good’, yeah? Good in the sense the tumour is getting a more extended shoeing, less good in the sense my bones very quickly turned in to hollow, useless tubes with moths flying round inside, and a not a platelet in sight. Paula’s new plan was that we would sack off the PCV and switch to Temozolomide (Temo), the other type of brain tumour chemotherapy.

We sat and went through the now traditional ‘scare the crap out of the patient session’ a.k.a explaining the treatment, its side effects and get consent to it. It’s great that another option is available to me, but there is lots of evidence to show that PCV works particularly well on my type of tumour, especially with the mutation mine has, and far, far less to say the same for Temo.  This is hopefully only because Temo hasn’t been around long enough to build up the same amount of longitudinal data on long term survival as PCV has, not because it’s far less effective for oligodendroglioma, but it still worries me a bit.

On the upside, Temo has a gentler side effect profile than PCV, and involves a 5 day course of tablets every 28 days, so is easier to manage practically than PCV. Even better, Paula wanted to delay starting Temo until the 1st May, giving me plenty of time to develop more platelets. Perhaps most importantly of all, there are no restrictions on caffeine, so I could go back to drinking proper tea (like I hadn’t done that after one cup of the decaffeinated version). The aim would be 6-9, four week cycles, meaning the treatment would run either to around the same time as the original planned PCV end date, or early in 2019.

That respite was literally just what the doctor ordered. Low platelet levels shouldn’t really cause any notable symptoms apart from clotting problems and bruising, but I was still feeling exhausted and weak from the flu. It took a couple of weeks, but one day I woke up feeling suddenly markedly better. Almost like my old self. According to the calendar, it was 9 weeks to the day since starting the second cycle of PCV. Who’d have guessed? I’m a perfect 9 weeker. Damn, Paula, it’s almost like you know what you’re doing.


4 thoughts on “A change of plan

Add yours

  1. Good to hear from you again Ruth. Sorry that you encountered some problems in the Spring but now you must be nearing the end of you Temo treatment and hopefully are feeling much better. Stay strong, you’re doing so well


  2. It’s good to have you back Ruth! You have been in my thoughts. Your sense of humour and ability to stay true to that is remarkable x


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