Tag: Everolimus and Lenvatinib side effects

September 14, 2023 Appointment

I had an appointment with the oncologist last week, at which I got the result of my scan of a couple of weeks ago. Good news and bad news.

Head MRI Scan Results

The good/bad news was that the size of my brain tumour had increased by 3mm to 17mm. As mentioned before, I had declined further medication at my last appointment, about 8 weeks before this one. so whereas an increase in the tumour is disappointing, it could have been a lot worse.

I think the reason that it was probably a bit better than it might otherwise have been was that I modified my diet to cut out high sugar foods and most red meat and eating more fruit (it is blackberry season after all) and vegetables and making vegetable smoothies. I have also been taking some supplements with known anti-cancer properties.

What I didn’t do was detox, which most holistic cancer practitioners say is essential, and I didn’t cut out all dairy, which is also much recommended. I do have this weakness for butter and cheese, which I had probably best put behind me.

Next Steps

I decided to go back on the medication – daily 5mg of Everolimus and 10mg Lenvatinib, down from 14mg. My reasoning was that if the tumour grows too big, I will be seriously impaired as it reduces the connection between my brain and the rest of my body. It was the effects on my balance and speech that led to the discovery of the tumour in the first place. I am hoping this return to medication will be temporary while I learn more about detox and diet and natural healing.

As noted in my last post of August 4, “Feeling Good”, I was having a really good time off the medication – less tired, more appetite, no nausea, no pain, more energy and able to enjoy exercising, mostly riding a bike or walking. So going back on the medication was not an easy decision and it remains to be seen whether the lower dose of Lenvatinib reduces the severity of the side effects.

The reason that I am looking at alternatives is that the choice with conventional therapy is between living with the side effects of medication or a shorter life feeling good. Either way, it will get a bit unpleasant at the end, either because the tumour grows unchecked or because the medication stops working. nobody is making any predictions how long it will take in either case.

So what I have started doing is seeking the help of a natural healing doctor who has a record of success in helping people overcome their cancer, in order to get the advice I need about detox and diet. I am glad that, as a Christian, I have a positive outlook and can meditate and pray, because the mental and spiritual aspects of healing are not to be underestimated. Watch this space.

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).

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

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.