Feeling Good

I haven’t posted for a while but thought it worth noting that I have been off the meds for about a month and feeling quite good as a result. As I noted in my post of 8 July, I agreed with the oncologist that I would suspend my combined therapy of Everolimus and Lenvatinib because the nausea, lack of appetite and lack of energy were taking their toll on my quality of life.

As I result I am feeling a lot better. I am eating well, though haven’t yet put much weight back on – only a couple of kilos. And I have a bit more energy as a result of which I have been exercising a bit more. But I need to increase my exercise further. We have had rather grey damp weather recently which has hindered my preferred exercise of cycling. We have an indoor exercise bike but that is not much fun. It certainly doesn’t compare to being out in the fresh air enjoying God’s creation.

Enjoying life again

And I find myself getting back into things that I was too lethargic to enjoy. I have a keen interest in classic racing bicycles and have several in various states of completion and restoration. These bikes have been languishing untouched for many months, as has my website about these bikes. I am in the process of redesigning the website which had got rather outdated and not good on mobile devices. And I am back to restoring and rebuilding some really good classic racing bikes, I am eager to ride them and photograph them for the website.

Next Steps

The fact that I have been off the Everolimus and Lenvatinib doesn’t mean that I have been ignoring the cancer. I haven’t done a full detox but I have made sure that I minimise my exposure to toxic materials. It is not generally recognised that whatever you put on your skin is to some degree absorbed by the body. I have even heard it said that you shouldn’t put on you skin anything that you wouldn’t eat. And even that eating these things is safer because your digestive system will eliminate some of it, whereas what is absorbed through the skin goes directly into your tissues and blood. So it is prudent to limit use of cosmetics and things like anti-perspirants.

The other part of my approach has been my diet. Cutting out foods that are high in sugar is a must, and something that I had been a bit careless about in the past. Also cutting down on meat and on processed food and increasing the consumption of healthy, and often raw, vegetables. I bought a blender and make smoothies with celery and other cancer-fighting vegetables.

I have also been reading up on the supplements recommended by doctors who specialise in the holistic treatment of cancer and am taking a number of those to supplement my diet.

Next Scans

I am due my next scans in a couple of weeks and hoping and praying that the results will be good enough that I can avoid going back on the medication. The big test of course is the size of my brain stem tumour. Two scans ago it showed a good reduction. Last scan it showed no change. I don’t know whether to interpret that as the meds becoming less effective, or whether to interpret that as the meds doing a good job stopping the tumour from growing. The next scans will show the effects of going off the meds and living a healthier life (though I recognise there is still more that I can do in that regard).

Alternative Cancer Therapies – Part 3

I have been on a combined therapy of Everolimus and Lenvatinib for metastatic kidney cancer in my lungs and brain since November 2022, so about 7 months. In that time my appetite has been badly affected and I have frequently felt nauseous. As a result of which my weight has reduced from 80kg to 68kg, which is quite a shocking reduction, seeing as how I wasn’t overweight to start with for someone of my height and build.

Added to my woes, I am just starting to feel better after 3 whole weeks of feeling really bad. It started with flu-like symptoms of headaches and aches and pains, then I developed a swollen and sore throat, badly affecting my voice, and then developed a mucus cough which I am at last getting over. A compromised immune system is one of the effects of the drugs and I assume that is why I have felt so bad for so long, with the sort of thing one expects to shake off within a week.

I had my regular meeting with the oncologist 2 days ago, on Thursday 6 July, and told him that I wanted to go off the medication for a bit so that I could get to feel normal again and hopefully repair my immune system. He agreed, but cautioned me that if I go off them too long, he will be unable to resume the same treatment, and he would have to start me on another drug.

At the same time, I have been looking at alternative therapies that might be kinder on the body and let me live a more normal life. I was learning particularly that some doctors are having impressive results treating cancer naturally as opposed to the traditional treatment of “cut, poison and burn” as surgery, chemotherapy and radiotherapy are popularly known. I have had all those, though the chemo is via a daily oral drug rather than being hooked up to a machine periodically.

Natural therapies make so much sense with three main components:

  • MENTAL, EMOTIONAL, SPIRITUAL wellbeing. These are widely recognised as having a major impact on our healing and health. I know in my own case I have had a bad time with anger, unhappiness and toxic relationships. Many people have experienced these or had other mental or emotional trauma. I manged to put much of it behind me when I became a Christian – being forgiven makes it so much easier to forgive. God forgives us but people may not be so forgiving, in which case all one can do is apologise and see whether there is any way to make amends. Sadly, if people are not forgiving and are angry and resentful, it only hurts them and ultimately hurts their health, as it undoubtedly did mine.
  • DETOXIFY. We are surrounded by toxins. They make us ill. They stop us from getting well. We need to detoxify our lives as far as possible and this means getting harmful chemicals out of our lives – things like cleaners, cosmetics, weedkillers, insecticides and so the list goes on. we should look at the ingredients of everything we use. Some things are hard to change – such as the impurity of our tap water. Although there are stringent requirements for the amount of various impurities in parts per million, there are so many impurities that added together, they form a substantial amount. So not only do we have to minimise ingesting new toxins, but we have to detoxify to get rid of the ones that remain in our bodies. This is something that I am researching how best to do and will update with my experience.
  • DIET. The consensus seems to be in favour of a mostly vegetable diet. Some advocate Vegan, some Vegetarian and others cutting down drastically on meat. There are differing opinions too on eggs and dairy. Where there is unanimity is on drastically cutting down on sugar and processed foods and refined grains, with an emphasis on buying organic where possible, which can unfortunately be expensive. Many doctors recommend various natural foods and food supplements with known anti-cancer properties

I am still in the process of researching and learning. Two websites that I like are the following. The people who started them are very generous with the information that they make freely available and both have plentiful experience successfully treating patients. They are:

What I particularly like about Dr Conners’ website is that it starts with a quotation from the Holy Bible, which is very apt and which well describes his philosophy.

I will provide updates as I go along and have some experience and results to share.

Battling Drug Side Effects – Update

It is now just over a week since I have been taking steroids (daily 2mg Dexamethasone) and they seem to be working. I have had more energy and less nausea, though Thursday morning just gone I did wake and threw up, but felt fine after. None of the persistent nauseous feeling that I have had previously. It was more like having eaten something disagreeable and then feeling fine once one was rid of it. I was only prescribed 2 weeks of steroids and it will be interesting to see how I get on when they finish. It will be another 2 weeks after they finish before I see the oncologist again.

Battling Drug Side Effects

This is all a bit earthy, so don’t bother reading it unless you are suffering similarly, or know someone who is.

The first half of last week was pretty bad for the side effects of my Everolimus and Lenvatinib medication. Sunday was not too bad. I just felt a bit queasy and had no appetite. Monday was rather the same and things turned down on Tuesday afternoon. Sadly I had to miss Christ Church, Brownsover, men’s Film and Chippy evening that day through not being able to keep anything down. This nausea and lack of appetite lasted through Thursday. Although I was very bad again Thursday evening, things did look up a bit after that.

Thursday morning I had a face to face appointment with Dr Ik Shin Chin, a doctor who had recently joined Dr Yakhub Khan’s oncology team. I did have a telephone appointment with her 5 weeks prior, but this was our first actual meeting. I was weighed prior to the appointment, showing that I had lost another 4kg, over half a stone in old units, that I really don’t want to lose. Total lost so far 14kg or over 2 stone. Not good.

We discussed the two side effects that were giving me the most trouble. One was the nausea, vomiting and attendant loss of appetite; the other was the tiredness and lack of energy. She decided to prescribe a short trial of steroids (daily 2mg of Dexamethasone). Also a more powerful laxative than over the counter types in case I needed to take Ondansetron again.

Getting Better

Friday morning I took a final Ondansetron and started on the steroids – one tablet with breakfast. I actually felt better that day, though I can’t say which medication was responsible. Saturday I rather surprised myself. Lyn was planning to drop round to her daughter, who lives quite close, to help with the construction of a raised bed in their garden. I decided to go along too, not planning to do anything other than sit in the sun and give advice. It turned out I did quite a lot – just no lifting of the heavy timbers, which I left to the younger folk. I had to take a few more rest periods than in pre-medication days, but altogether quite promising.

And yesterday I felt fine after a good breakfast of toast, fruit and my diet of tablets, and then walking the half mile to church and then back after the service. Praise God.

March 23, 2023

I had my regular appointment with the University Hospital oncology team this morning. These are approximately monthly and this month it was by telephone with a new registrar Dr.Chin, whom I have yet to meet. I have a blood test just before these appointments and the purpose of the appointment is to review how I am feeling, to review any side effects of the medication, to review the blood test results and to prescribe the next month’s medication. So I discussed all this with Dr.Chin and, since everything is proceeding normally, she will be prescribing the same doses of Everolimus and Lenvatinib as before. The only really annoying side effects are low energy, poor sleep and nausea. No change there. We are at last getting slightly better weather with some nice sunshine, but I’m really looking forward to when it is warm enough to sit outside and catch some rays to boost my Vitamin D levels, which are so important for one’s immune system.

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

Nauseous Again

Yesterday I woke up feeling a bit iffy, but had a light breakfast of tea and toast. About midday I ate a crumpet. About mid-afternoon, I was starting to feel quite nauseous and took an 8mg Ondansetron tablet. This is the same anti-sickness substance that I was given in the IV drip at the time of my last episode. In spite of that I was sick during the evening, and took another tablet after that. That seemed to do the trick. My stomach settled down and I wasn’t at all troubled during the night. I took another tablet this morning and will take another a bit later just to make sure. I was prescribed two a day when necessary.

This is a fairly common side effect of Everolimus and Lenvatinib. At least in my case it isn’t continuous and I hope other sufferers find the same. It may be a coincidence that this episode and the last both started on a Monday. Or perhaps it is in some way a consequence of “Sunday dinner” and a different eating pattern on Sundays. I am making sure to keep a note of what I eat and when to see if there is a correlation and therefore a way to avoid nausea.

Please leave a comment if you have experienced anything similar on Everolimus, Lenvatinib or other drugs, and what works for you.

Side Effects of Everolimus and Lenvatinib

I am currently on these two cancer drugs designed to prevent tumour growth and to prevent the formation of the new blood vessels they need. Unfortunately they come with side effects and one potential side effect is feeling sick. That hit me big time back in mid-December 2022, when I felt really sick, was sick and couldn’t keep anything down. That ended up with me being dehydrated and going to hospital where I was kept in and put on a drip with fluids and anti-sickness medication. Then I was OK until last Monday. Fine at breakfast and lunch. Then later in the day started feeling queasy, couldn’t eat an evening meal and was subsequently sick. I thought I might feel better the next day, but didn’t. I didn’t want to eat anything and only sipped water in a vain attempt to stay hydrated. Was sick during the day and 3 times that night. Next morning I called the Macmillan Nurse at University Hospital, Coventry and she arranged for me to go in to the oncology nurses’ clinic shortly after mid-day. I duly went and, as I find usual there, was given first class treatment, by really pleasant and efficient nurses. They did the usual checks and put me on a drip, again to hydrate me and inject anti-sickness medication. The medication went in first and then several hours of hydration. While that was going on, I started to feel much better and they kindly ordered me some food – my first in over 48 hours. I left about 5:30 feeling like a human being again and many thanks for the wonderful care I received.