God bless Kadcyla and all who sail in her

I realise The Wedding has quite taken over my blogging (and rightly so) but I also realise there is a back story which hasn’t been updated. Yes, it’s back to the pesky cancer and all it throws at me. The Paclitaxel, as you may or may not recall, has caused peripheral neuropathy. This basically means the fine nerves are damaged leaving my little and ring fingers on both hands numb and unable to move properly. I say “I’ll cross my fingers for you” to friends in a blasé kind of way, secretly knowing that I can no longer cross my fingers on either hand. Of course, my right hand is the worst together with the numbness on the soles of my feet. It is quite strange walking when you can’t feel where your feet are going very well. So, when I go to see the nurse practitioner who is taking the place of my oncologist for 2 weeks, she is concerned about my hands and feet and decides she will not be able to prescribe Paclitaxel for me that day. It’s a bit of a blow because this is the third chemotherapy I have been on since June and I am reluctant to let it go. She is firm, though, and says if I continued to have Paclitaxel, my hands would eventually become useless and I may no longer be able to walk due to the numbness in my feet. I reluctantly agree. When I see the oncologist the following week, she is in agreement with the nurse and tells me I can no longer have any of the taxanes. I am now keen to move on to the next drug. Having Herceptin is not enough to keep the monster at bay.

Interwoven into this and the wedding story is the story of Us Moving. From the time I come out of hospital, we have the house on the market. The estate agency selling for us send their whole sales team to look at the house so they will know what they are selling. They troop around and all do a comedy double-take when they get to the main bedroom as I am in bed, bald, face swollen with steroids and unable to get up and be polite. I do smile, though. In the following weeks we have 40 different viewings, plus whatever they showed while we were away in Thailand. Some people are nice, some are rude (like the man heard in only the second room loudly asking the estate agent if he had anything else to show him) and some are plain bizarre. We knew one viewing was going to be cancelled because I saw the woman concerned look at the front of the house and say loudly “I don’t like it” to her companion. We have a family who are concerned about schools in the area. We sit on a boundary and the primary school our side has the best OFSTED results of all primary schools in our area but the school on the other side of the road has a more middle class intake. The woman has one child aged 4 in the nursery of the middle class school but knows siblings have not been taken in this academic year as there are too few places for them. She is pregnant now and is concerned that in 4.5 years time when her unborn child should be going to school, we cannot guarantee her child will get into the middle class school. I give her a look. No, she is serious. They visit our house 3 times, including a trip to our kind neighbours who allow them to go up and see their loft extension as they ‘cannot envisage it’ and then they collapse with a fit of the vapours and are never seen again. We reduce the price slightly. Mr Mason and I take a few days up in Lincolnshire to buy the 3 bird roast from the best game butcher we have found and when we come back, we find we have 11 viewings booked in just one day. This is something of a comedic day with people rushing through while Yakkety Sax, the Benny Hill theme tune, runs through my head. By the end of the afternoon we have an offer at the asking price. This is good but the estate agent suggests we wait to see whether any other offers materialise. Another offer also comes in at the asking price. One buyer has a considerably larger deposit than the other and the other buyer doesn’t want to bid more so we go with the bigger deposit, now called Buyer A. Ten days after we have accepted Buyer A’s bid and the whole shebang with solicitors etc has kicked off, Buyer B comes back with a much increased bid. Now, Buyer B is a lovely family and we had some nice chats with them but we think it is not fair that we drop Buyer A after everything has started up. Buyer B then drops a handwritten letter through the letterbox asking if we would reconsider as they love our house and want to live in it. This actually makes me cry, mostly with frustration. Had they made us an offer when they first saw the house or, indeed, come back with a higher offer immediately, they would probably be sitting down now, looking at the survey on the house and planning on where they would put their furniture. I don’t know why they didn’t do this. Probably life got in the way. So we are sticking with Buyer A and scratching our foreheads as to why our house was suddenly so popular.

So we sail on into the waters of Kadcyla (which could be a girl’s name), also known at TDM1. This drug is only provided by the Cancer Drugs Fund (as is Lapatanib, one of the ghastly pair that put me in hospital for a week) and has to be specially applied for due to its high cost. Apparently, 14 sessions cost £90,000. Although I only see the oncologist on Wednesday, she is clearly all over it like a rash (or a rat up a drainpipe – I am not sure which analogy she would like best) as I hear on Thursday that it has been approved and I will be given Kadcyla the next day. It’s one of those drugs where I have to be observed during and after and, of course, my blood pressure decides to play up and soars. I get sent home with a request to go to see my GP the following week. The side effects from the first dose are not too bad. I get a small headache and some pain in my upper body which I attribute to Vitamin D deficiency and ask for a blood test to check it. The pain is not due to Vitamin D, the results say. This is disappointing as that would have been curable very quickly. The second dose of Kadcyla gives me headaches which last for around 5 days. It feels as though I have the worst hangover of all time and nothing touches the pain until I resort to Oramorph. Once the headaches go, I am hit with muscle, bone and joint pain. This time, Oramorph does diddly squat, as I believe the young people say. Mr Mason makes me hot water bottles to hold against my back, my arms and other bits that hurt.

What upsets me the most is that some people will never have the opportunity to experience side effects like this because Kadcyla is one of the drugs the Government is poised to remove from the Cancer Drugs Fund. As I am already on the drug, I will be able to continue with it although it is a little unclear whether that will continue for as long as the drug is effective or for what is considered a course which is currently 14 cycles. As I have whizzed through several types of chemotherapy already, there are not that many more which are going to be suitable for me. Not one chemotherapy fits all sizes. But I digress slightly. There is a lot of argument about whether the Cancer Drugs Fund is a useful entity, whether it is ethical or whether the pharmaceutical companies are just making obscene profits from the drugs they produce. I don’t really want to get into that debate here but all I can think of is the woman (or man) who sees their oncologist just a week too late to get drugs they really need. If I didn’t have Kadcyla, I don’t know what my situation would be. Herceptin is not enough to keep this aggressive cancer at bay and seeing my oncologist a week or so after this drug was removed from my options would be one of the cruellest things I can imagine. Knowing it was there, that it existed, but that I could not have it. I still have people asking me how many sessions of chemo I have to have and when it will end. The answer to that question often brings surprise or shock and I hate answering it. Chemotherapy will end when it no longer works for me and no longer holds the cancer at bay. Horrible, isn’t it? And I really feel for those who will not even get the opportunity to try out the side effects of some of the more expensive drugs.

2 thoughts on “God bless Kadcyla and all who sail in her

  1. Hello! I just found your blog through Linkd in and wanted to say I totally share your frustrations with the Cancer Drugs Fund – it’s almost s blessing and a curse.

    I was an administrator for Surrey PCT on the CDF.

    Thinking of you today

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