Tag: Brain Tumour

My Kidney Cancer Update – September 2024

I hadn’t been near my computer for a while, so this blog is badly in need of updating.

My recent scans were goodish news – my lung metastases have reduced from 4 to 2 and are inconsequential as far as size goes. My brain metastasis is really the only cause for concern and that is stable – no increase in size, but not the reduction that I would hope for.

I am still on Everolimus (5mg) and Lenvatinib (10mg) and the side effects are not too worrying – mainly tiredness and lack of energy. Not like when I was on a higher dose of Lenvatinib when I had no appetite and was nauseous much of the time.

I am still going to the gym and that is doing me good, but I haven’t been much in the last two weeks for a couple of reasons. One is that I have had a persistent minor chest infection – the sort of thing that one would normally shake off in a few days, but for the medication which compromises the immune system. I take things like Vitamin D to help boost my immune system, but it is still not what it was. The other reason my gym time has reduced is that I am not allowed to drive, and public transport means that I have quite a long walk from the bus stop to the gym. That walk was great when the weather was better – a nice walk mostly through a park, but it is somewhat less appealing when the weather is cold and wet as it has been recently.

I asked my oncology consultant about getting my driving licence back. I haven’t had any problem with fits or blackouts since my treatment over 3 years ago. He agrees that he is not really the person to judge on brain issues, so he has referred my request to the consultant who treated my brain tumour in Birmingham. I have yet to hear back.

Goodish News

I have just had my recent scan results and am not quite sure whether to be disappointed or elated. The tumour in my brain has not increased and is pretty much the same, whereas some of the small nodules in my lungs are a bit smaller, others unchanged.

So it is very good news that things are directionally right, but after all the hard work I would have hoped for more improvement. My diet is pretty strict in terms of no dairy, no sugar, no meat and only occasional fish. I sometimes think it would be really nice to have toast and marmalade for breakfast and I occasionally long for something like apple pie. I don’t make exceptions because of the risk they may become too frequent.

I have been trying to exercise too, mostly walking. The wet and windy weather is a bit off-putting and I very much feel the cold. I am really looking forward to warmer weather and the possibility of getting out on one of my classic racing bikes. I do ride my mountain bike a bit, but it just doesn’t have the wonderful feel and pace of a thoroughbred racing bike.

I thank God that overall I am in pretty good shape. Everything under control and I have even been able to do some heavy lifting in the garden.

Other Side Effects

As stated elsewhere, I am on a combined cancer therapy of daily 5mg Everolimus and 14mg Lenvatinib. The major side effect that I have already commented on is nausea. Last time, I quickly resolved it by taking Ondansetron. Just make sure you have a supply of laxatives if you do the same.

I thought it might be helpful to list some of the other side effects, so that you know what to expect. It would also be useful to know if you have a different experience. Please leave a comment if you do. Generally, I am tolerating the drugs quite well and the side effects are not having too much of an effect on my life.

Tiredness and Weakness

Both drugs come with the common side effect of feeling tired or weak. Lenvatinib comes with the common side effect of trouble sleeping. I am having all these to some extent. Sleeping is variable. I have some very good nights, but some bad ones too where I am just lying in bed for hours not sleeping. Overall, I am not drastically sleep-deprived, but would like a bit more sleep. I am trying to combat these effects with more exercise. But exercise is a bit of a challenge when you are feeling tired and weak.

Itching

Again, both drugs have the common side effect of itching skin and that affects me. I do not notice it too badly during the day, but it is sometimes really annoying at night.

Red Hands and Feet

Both list redness of the hands and feet as being quite common side effects, It affects my feet more than my hands and doesn’t trouble me. My feet are not unduly sore or anything like that.

Changed Taste

I am finding that a lot of things taste different from before. Not for the better, either. Oranges taste bitter. Good red wine tastes worse that the cheapest red wine you can buy. I didn’t drink that much anyway, but it is a pity not to be able to enjoy it. Also texture matters more. I stopped liking steamed potatoes, but am fine with mashed or fried.

Mouth Sores

I am getting occasional mouth sores, which are a listed side effect of Everolimus. They are not really worrying so far, but would be if they got much worse. I have just started using Bonjela on them and that helps.

That is about all that is affecting me that I notice. There are potential effects on the kidney and liver, which would be detectable by blood test. I have blood tests every month and am told that the results are satisfactory soo far. I will report it if anything changes