Side-Effects

'Loose stools' is probably the most common subject discussed by FROG's. Unfortunately, this is something that anyone taking a TKI (targeted chemotherapy), will probably have to deal with during their treatment. Loperimide is typically dispensed along with your drugs, which can help manage mild cases. Sickness is also linked to this issue and metaclopromide is typically dispensed to help deal with this too. Sickness and generally feeling unwell during and immediately after opening your bowels, is a typical complaint we hear. It is quite common amongst FROG's to take a TKI 'holiday'. This should only be done in consultation with your oncologist, but typically this is used to help you more comfortably enjoy short breaks, big occasions or simply just having a rest from it all! The half-life (lasting symptoms) of TKI's, is typically short, so a holiday of a few days, will generally give immediate relief from the symptoms.

That said, Immune-related Diarrhoea & Colitis, can be a real issue for some when starting an immune-checkpoint inhibitor, such as Pembrolizumab & Nivolumab. Onset is usually within 12 weeks of starting, but can be up to a year after the last dose! Your oncologist or GP should refer you to a gastroenterologist or similar professional to explore further.

Many FROG's try and adjust their eating habits to alleviate these symptoms and gut health is a good place to start. Giving up or reducing caffeine intake is common and the use of pro-biotic drinks and yogurts another. We cover diet in more detail in our Wellbeing section.

Another factor which can contribute to colitis type symptoms, is taking long term PPI's. Both Lansoprazole and Omeprazole list sickness and diarrhoea as possible side-effects, which isn't ideal if you are experiencing stomach issue already so it may be worth discussing with your GP or Oncologist, to switch to an alternative treatment.

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If you are being treated with a TKI such as Axitinib, Lenvatinib or Cabozantinib, then an elevated Blood Pressure (BP) or 'Hypertension', is likely and actually welcomed, as it helps demonstrate that the TKI is active in your body. It is essential that you seek support through your GP surgery, as you will need to manage your BP. It also helps to have your own Blood Pressure reading machine to record your readings routinely. Many now, connect to your smart phone so you can easily share the results with your medics. Your Oncologist can advise you regarding an acceptable BP, relative to the treatment that you are on, but it is typically your GP that will help you manage this. Amongst our group who are on TKI's, it is typical to have a BP of circa 140/90. Often, you will be prescribed more than one hypertension drug to help you manage your BP and it may take some time to get the balance right and manage any additional side effects. Here is a list of the typical drugs used to manage your BP.

Fatigue is a very common symptom of having kidney cancer and/or treatment. For some, it can be the most disruptive side-effect, as it can affect you both physically and mentally. You should let your GP, Specialist Nurse or Oncologist know, if you are suffering, as you may have anaemia. One of the best ways to help with fatigue, is to actually exercise, even as little as you can mange, may help you feel better. Just getting out in the fresh air, is a help in itself.

There is more useful information on how to help manage Fatigue, on the Kidney Cancer UK website here.

This condition can greatly vary from patient to patient. Some have little or no issue with this, but others can suffer quite badly. Those who suffer have found several useful tips, including handling the TKI's with silicon gloves. Using E45 or other Aqueous creams for cracked skin or shea butter, which is often recommended.

This is another symptom with varying degrees of impact. Yogurt can be used for covering the tablet when swallowing. Maldon Salt in warm water, is an alternative to Corsodyl mouthwash. Neither taste great but the salt is less painful. Children's toothpaste can also help and Duraphat 2800 helps with mouth ulcers. Difflam spray, is also great for sore mouths and is easy to fit in a small bag when out and about.

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Over time, it is common to find that your thyroid has been affected by treatment. This is often unnoticed by the patient, but regular blood testing will alert your medics to an issue. Most simply take a synthetic alternative and it has little to no effect on your daily life.

Due to the way that TKI's perform, it can hinder the way that your body would naturally heal. This means that cuts and sores, may take longer to heal. 

Importantly, if you need to have any invasive treatment, like having a tooth extracted, then you will have to stop taking the TKI for typically two or three days before, then not restart until you have been assured that the wound is healed. It is very important that your oncologist is aware of the treatment and advises you of when you should stop and restart the treatment.

Avelumab and similar immunotherapy drug treatment can cause kidney inflammation and may affect how the kidneys work. This is called nephritis. This is not common, but if it is not treated it can become serious. You will have regular blood tests to check how your kidneys are working. If tests show kidney changes, you may have steroids or other treatments.

Contact the hospital straight away on the 24-hour number during treatment, or after it ends, if you either:

• have blood in your urine (pee) 

• are passing less urine or peeing less often than usual.