Those who were at the London meeting on 22nd October were invited to fill out a table of the side effects they were having or had had. The results from patients taking imatinib are quite interesting. The thing that struck me (Judith Robinson) as I was doing the counting was how different we are. Some people have a huge list, and others very few. Both the patients now taking only 300mgs had the most, which of course is why they are taking 300mgs. Some of the effects seem to be much more common than the Patient Information Leaflet would suggest, so I will be passing on this data to Novartis. I know we are not a random sample of patients, but tiredness is supposed to affect about 10% or less: in our group it affected 75%! Puffy eyes again should be 10% and in our group it was almost 50%.
I suspect that many of us do not report things like painful hips, or cold toes or fingers (the expected number being 1% and in our sample it was nearly 50%), because we do not consider it that important, compared with the fact that our tumour is under control. Also, because we were not asked to put our names on the replies, we could be honest!
As far as the results from the patients taking sunitinib are concerned, there were too few to really draw any conclusions, except that again some patients had far more problems than others, for no obvious reason..
Imatinib
| SIDE EFFECT | FREQUENCY OF OCCURRENCE | ||||
|---|---|---|---|---|---|
| All the time | About once a week | About Once a month | Rarely | Just once | |
| Abdominal pain | 2 | 4 | 3 | 1 | |
| Blistering of the skin | 1 | 2 | 2 | 1 | |
| Blurred vision | 4 | 2 | |||
| Cellulites | 2 | ||||
| Chest pain | 1 | 1 | |||
| Cold toes or fingers | 4 | 3 | 2 | ||
| Constipation | 2 | 1 | |||
| Cramp | 4 | 7 | 3 | ||
| Diarrhoea | 7 | 3 | 2 | ||
| Difficulty hearing | 1 | 1 | |||
| Difficulty speaking | 1 | 1 | |||
| Dizziness | 1 | 1 | 4 | ||
| Dry mouth | 3 | 1 | 1 | 1 | |
| Fainting | 1 | 1 | |||
| Flatulence | 9 | 2 | |||
| Fluid retention | 3 | 1 | 1 | 1 | |
| Hair loss | 2 | 1 | |||
| Heartburn | 6 | 1 | 1 | ||
| Indigestion | 6 | 1 | 2 | ||
| Insomnia | 1 | 1 | |||
| Irregular heart beat | 1 | 1 | 1 | ||
| Loss of appetite | 1 | 1 | 2 | ||
| Mouth ulcers | 1 | 1 | 3 | ||
| Nausea | 3 | 4 | 2 | 3 | |
| Night sweats | 3 | 1 | 2 | ||
| Nose bleeds | 1 | 2 | |||
| Numbness of hands or feet | 2 | 2 | 2 | 2 | |
| Pain in hips | 2 | 3 | 1 | ||
| Pain in muscles or bones | 2 | 1 | 1 | ||
| Pain in the eyes | 2 | ||||
| Painful breathing | 1 | ||||
| Pale skin | 2 | ||||
| Puffy eyes | 12 | 1 | 1 | ||
| Rash | 2 | 1 | 1 | 1 | |
| Severe headache | 2 | 1 | 1 | ||
| Sudden fever | 2 | 2 | |||
| Swollen ankles | 2 | 1 | 1 | 1 | |
| Taste changes | 2 | ||||
| Tiredness | 11 | 2 | 2 | ||
| Unexplained bruising | 1 | 1 | |||
| Vomiting | 1 | 2 | |||
| Watering eyes | 7 | 2 | 2 | 1 | 1 |
| Weakness of limbs | 1 | 1 | 1 | ||
| Weight increase | 5 | ||||
| Anything else | |||||
| How often do you miss a dose? | 1 |
| Dosage | No of patients |
|---|---|
| 800mgs | 1 |
| 400mgs | 13 |
| 300mgs | 4 |
| unknown | 1 |
| Total | 19 |
| Time on Glivec | No of patients |
|---|---|
| <=1year | 5 |
| 2 years | 4 |
| 3 years | 2 |
| 4 years | 4 |
| 6 years | 2 |
| 8 years | 2 |
| Adjuvant use | nil |
| Total number | 19 |
