Pazopanib side effects

My blood pressure went very high  after normally being OK n  I was put on meds for it.After a few months my dosage was decreased to 600mg/ day. I believe others have found the same.

Btw, just read your profile. Don't read the statistics!! That's all they are. We're all individuals. I've been living with kidney cancer now for over 14 years, others here for longer n most have secondaries. I was on Pazopanib 2013 to 2016 n have been on a treatment break for 3 years. Others are still on it n have been for years. 

Luckily kidney cancer, compared to to  other cancers,   is a slow grower, described as " indolent'" or basically lazy, thank goodness!

I also had extreme fatigue and a very sore mouth on 800mg Pazopanib. I went on a reduced dose of 600mg and things have settled down a lot although I’ve had to have medication for blood pressure and an overactive thyroid. I must admit I was sceptical about reducing the dose, whether a 25% reduction would make any difference to the side effects and whether it would be effective. All I can say is that my cancer is stable and I am living a normal life, although not at the same pace as before. 

Hi ,

I've been on Pazopanib now for four and a half years at the full dose of 800mg daily.  My blood pressure also went up but I was already on some medication for this so they just tweaked that and it settled again OK.  I did suffer from a variety of side effects but they have generally settled down now.  I am still not sure if my body just tolerates them better or if I have learned to manage them better.  I do still suffer from upset stomach and diarrhoea occasionally but it tends to relate to specific foods.  I am on a trial where I take the meds for six months and if the disease is shrunk and stable I get a three month break.  The foods that upset my stomach seem to vary each time I return to the medication, at the moment it is broccoli.  I did suffer a bit from nausea as well but discovered that eating smaller meals more often helped with that until it settled down.

I did suffer from a sore mouth and mouth ulcers but moved to a toothpaste with a milder flavour and now only use that.  I treated the mouth ulcers with bonjela which worked for me.  I got sore hands and feet and initially used a moisturiser on my feet and hands each night and wore open sandals or crocs without socks as much as possible.  I now wear crocs nearly all the time, no longer bother with the moisturiser and my feet are in better shape than they ever have been in my life.  I had some cramps in my legs although that may have been unrelated.  I did not sleep as well although I think that this might also have been psychological rather than physical.  I still wake fairly frequently at about 4 or 5 am wide awake and unable to get back to sleep.  I have learned that if this happens I am better to get up for an hour or so, go through my bedtime routine again and then sleep in a bit later the next day, the alternative is to spend all of the next day half asleep.

The most noticeable change for most people is that the medication removes the pigment from your skin so your hair goes pure white all over your body and you need to either avoid the sun or wear sunscreen.  I have been caught out by this a few times and still have scarring on my shins from where I had blisters after wearing shorts without sunscreen for a few hours in Brittany a couple of years ago.

A couple of strange effects for me were that my haemorrhoids no longer bleed and a couple of skin tags shrivelled up and dropped off.  Presumably the medication compromised their blood supply as well.

Like a lot of medications it is a very individual response but if your husband can tolerate it, it is a good medication.  Of the group of ten who started the trial at the hospital I am seen at, two of us are continuing on the medication after all this time and both of us have very low level side effects.  Hopefully your husband will be one of those where the side effects settle down and the medication continues to be effective.

All the best to both you and your husband,

Gragon xx

Hi Aleecr

I'm on Pazopanib too! Unlike most people I started on 400, went up to 600, the on to 800. I didn't tolerate 800 and came back down to 600. All told I've been on it 3 years. I only have a break if there's a significant problem, or I'm doing something significant where it would just be nice to be normal. My breaks have been 1 week for low white cell count, one week for a small bowel bleed, one week for my wedding, and most recently in March, two weeks for an inflamed bowel

I've run the gamut of side effects, some have stopped, some have changed, some have been a constant.

Sore mouth and changed taste buds, sore hands and feet, all lasted about 2 months then I had a week's break and they didn't come back.

Nausea / vomiting / diarrhea this is a come and go - definitely triggered by the smallest amount of alcohol, but also something as simple as getting out of bed in the morning - it's almost like morning sickness for me - so not food related necessarily.

I've very recently found out that I'm a lot more sick that they would expect and was offered the possibility of a change of treatment - but to be honest this is working and I'm happy to put up with a bit of sick for that.

Fatigue - this is a come and go. I was extremely fatigued at the start, but it settled quite well - however if I really overdo it I really know about it for several days. In the lead up to the last break I was literally exhausted - a combination of nausea, vomiting, diarrhea and not eating. Once my bowel settled I felt amazing almost immediately and that continued for a good two months. It's only recently that the vomiting and nausea have kicked back in and I have the odd very tired day again as a result of those.

Night sweats and hot flushes - have been on and off but tend to settle for a long time after a break.

White hair and no skin pigmentation - like Gragon - that's constant.

High blood pressure - mine was always on the low side so that was a surprise. I started on 5mg Ramipril and that worked fine until my last break. When I went back on my BP climbed and didn't settle, so that's now been adjusted to 10mg and is fine again.

My thyroid is also out and I take levothyroxine for that - that was also part of the fatigue issue.

It's a bit of a minefield and you might find that 800 is just too much and he needs to come down to 600.

It's worth knowing that coming down in dose doesn't make the drug less effective - you either respond or you don't I've been told as I was terrified to come down from 800. Respond is either the tumour(s) shrink, or they stay stable. I'm in the stable camp - and I wouldn't be in the shrink camp, even if I could tolerate 800 apparently.

Hope that helps.

I have to echo what Jo has written. It’s not what you want and you have to adjust to it, but I’m finding it manageable as are many other people in this group. I also felt I was being defeatist going down to 600mg but as the oncology nurse said, a seventeen stone man would be on 800 and I’m quite small. Don’t know if it’s scientifically accurate but it made sense to me.