
Side-Effects
Not one person is alike therefore we can all react differently to each drug. In our experience, the main side-effects are experienced from the TKI's (Tyrosine Kinase Inhibitor's), like Axitinib, Lenvatinib and Cabozantinib, but others also react to the Immunotherapy drugs themselves, e.g. Pembrolizumab and Nivolumab. These are the typical reactions we have experienced and how we have best tried to manage them. It is also worth noting that, often symptoms will naturally come and go during the treatment cycle, or if you are taking a TKI 'holiday' (break in treatment).
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We cannot offer medical advice, so please always check with your GP or Oncologist, before starting any additional medicines or treatments.
Bowel Issues
'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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Sore Hands & Feet
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.
Sore Mouth
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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Thyroid Issues
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.
Blood Pressure
TKI's are responsible for a typical uplift in blood pressure, so it is normal to be prescribed something like Amlodopine, to help manage this.
Bleeding/Healing
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.