Tag: Side effects

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.

Separate Faith and Cancer?

It was suggested to me that perhaps I should separate this blog into two blogs – one for Faith and one for Cancer. Here is some of my rationale for keeping things the way they are:

Healing

Every holistic healer and many in the medical profession will say that the mind is an essential part of healing. In fact there is evidence that mental trauma can make you sick in the first place. It is generally recognised that mental well-being is essential to physical well-being.

There is no doubt in my mind that my Christian faith contributes massively to my mental well-being. Two very powerful contributors that faith provides are Gratitude and Forgiveness.

Gratitude is so healthy because it is so positive. We are grateful for what we have and not anxious or envious of the things we don’t have. Christians are indeed extremely grateful for the redemption offered by Jesus Christ. Gratitude goes beyond that, for the beauty of God’s creation, for shelter, for warmth, for food, for other people. As I write this, I am additionally grateful for the warmth of the sun on this slightly chilly autumn day and for the beauty of the flowers outside the window. As I prepare to go to bed at night, I thank the Lord for all the blessings of the day.

Forgiveness is absolutely essential. If we do not forgive, we can become bitter, resentful and angry. All very negative emotions that damage our health. I remember a few years ago I was angry with the police for falsifying their testimony to make it appear that I had committed an offence that I didn’t commit. It made my blood boil, I lost sleep over it, it affected my whole life. I didn’t know it at the time, but I already had kidney cancer and I do not doubt that my mental state made it worse. Then I became a Christian and learned to forgive and put it behind me. Not forgiving hurts us and not those we don’t forgive.

We are forgiven by God through faith in Jesus Christ, so who are we not to forgive others? Like many others, I have difficulty forgiving myself for. things I have done that hurt others. But that is something we have to learn too – make amends where we can and ask forgiveness where we can, and then put it behind us. God doesn’t forgive us for us to feel guilty, but to feel free.

Mental Outlook

Gratitude and Forgiveness are two essential ingredients of mental well-being. But faith gives us more than that. I was diagnosed with a tumour in my brain stem. A devastating diagnosis, except I wasn’t devastated. I put that down to my faith which the Lord had given me just a few months before. What my faith gave me was acceptance. Not acceptance that this was fate and let it take its course, but acceptance that I had to do what I could to get well. And if I didn’t get well, so be it. That was over 2 1/2 years ago, since when there have been a few ups and downs with beneficial treatments and medication side effects. And a lot of learning too about cancer and the causes of cancer and about alternative healing, both the scientifically sound and the scientifically unsound.

All the while, my faith has given me a positive outlook. Of course, I am not absolutely joyful when suffering medication side effects, but extremely grateful for all the times when I feel better and have energy. Not only do I pray for healing, but also that the rest of my life will be useful. When I first prayed for healing, the answer I got was “Why?”. That is a very good question and if we are sick, we need to know the answer. That question did rather change my outlook.

Body, Mind and Spirit

Our body, mind and spirit are inextricably linked. Our bodies will not be healthy unless our minds and spirits are too. And that is why I have linked my cancer and my faith together in this blog. Although old in years, I am young in faith and continually learning, and some of that is reflected in this blog. All blog entries are categorised by Cancer or by Faith, so you can just choose to read one or the other. This post falls into both categories, and I hope helps the reader recognise the importance of making the whole person healthy,

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.

Plodding Along

I haven’t updated my health status for a while, for the simple reason that there is not much to report. I had a telephone appointment with the oncologist a few weeks ago. There wasn’t much to say on my part. I continue to feel very tired much of the time from lack of sleep and weakness caused by the medication. And I continue to feel nauseous from time to time with everything coming up about every week or 10 days. The Ondansetron quickly gets me over that, fortunately.

I have blood tests before every appointment to make sure that everything is in order and that I am tolerating the medication (Everolimus and Lenvatinib). The last blood test results were all good, so that I am continuing the medication at the same dose. I have a face to face appointment next week, but won’t know much more until after my next scans in about a month. From the point of view of quality of life it would be nice to reduce the medication, but I wouldn’t want to do that until after my next scans, the last ones being so positive.

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.

Ups and Downs

Life with cancer tends to be a series of ups and downs. Times when everything is going great and times when one doesn’t feel too good, usually because of the cancer treatment side effects..

During the last week I had a blood test for anaemia, which is one of the potential side effects of Everolimus and Lenvatinib. The result I got last Friday was that I needed iron and folic acid. It was suggested that I have an intravenous infusion for the iron, as being a bit kinder than tablets and an appointment was made for Monday, 6th March.

Sunday 5th March was a bit of a high. I was feeling good and walked the half mile to church and was able to stand easily. Previously, when suffering groin pain, I had to use the chair in front for support to ease the pain. Then, after a cup of tea and a biscuit, I walked the half mile back home.

Later that Sunday was a bit of a low. I felt really queasy again and took an Ondansetron tablet, then another before going to bed. I felt OK Monday morning but took another Ondansetron to be sure. Then off to the Maple Unit at St. Cross Hospital in Rugby for my iron infusion. This is a fairly new unit where they treat haematology and oncology patients.

The Maple Unit is a very nice new facility with very pleasant and efficient staff. The checked my blood pressure and temperature and then hooked me up to a drip for the best part of an hour. The time passed fairly quickly checking my emails and drinking a cup of tea.

The next day, Tuesday the 7th, was Lyn’s birthday so we went to lunch in the Orangery at Kilworth House. The orangery itself is a very nicely restored Victorian structure, light and airy during the day and the food is very good. We sat by a window and the sun was streaming in.

Sadly the meds got the better of me and I was only able to eat a very little, but what I had was excellent. There was a slight disappointment for Lyn who wanted the Stone Bass on the menu, but they had none. Their supplier had let them down. She had to settle for a more mundane fish. This was the only time that we had been there that they didn’t have something that was on the menu.

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

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.