Pazopanib

Hi @pataj Many of us in this group are on Pazopanib and deal with the side effects by taking other meds, eg anti-sickness drugs, anti diarrhoeal drugs.

 Loss of appetite n taste changes are usually dealt with by having a treatment break of eg a week every 3 months or so.

I've been on Pazopanib since 2013, tho I had a break of 3.5 years before going back on it in Oct 2019. Since then every thing has shrunk, so it's worth persevering with the side effects 

Others are bright white straight hair, mine was grey n  naturally curly.

Some have sore hands n feet, I know  has this. It does vary between ppl. There are a number of side effects, but we don't all have them all. Yes, they are " challenging" but bearable, tho cumulative. Stick with it!

I'll let others tell you of their experience.

Like you I had my right kidney removed in 2017 and I recovered well. Last May/June a routine scan showed that the original cancerous renal cells had appeared in the Illium area of my pelvis and I was put on Pazopanib with a 800 mg per day dose. It was awful and after a few weeks I had bleached white hair all over my body my skin had paled too as I was always tanned looking. The only side effect I didn’t get was sickness although at times I did feel nauseous. The worst side effect was my mouthful of very sore ulcers on the top sides of my tongue and really bad loss of taste. My dose size was reduced to 600 mg/day and things began to improve as time went on. I took a week off it before a holiday last October and my full taste came back much to my delight so I could enjoy my Greek holiday food. Shortly after continuing with the Pazopanib my taste went downhill once again with the return of that horrible metallic taste in my mouth once again, and really that’s the only thing I suffer with now and occasional bouts of the dreaded runs. I use mouth washes to relieve the metallic taste often several times a day especially after eating. One of the main things when it comes to eating and taste is that anything spicey (my favourite foodstuffs) is enhanced greatly. Where I once ate Vindaloo strength curries I can just about tolerate a run of the mill Tikka Maslala now before bursting out in bath’s of sweat (grhhh). Even though I’ve never really been a sweet fan I now eat sweet things like custard and rice pudding as I can taste sweetness well. My appetite is suppressed which for me isn’t a bad thing as I’m well overweight anyway l.o.l. and I’ve lost weight. I do sympathise with you and as mentioned by others carrying on with Pazopanib is the way to go !!!!!

Hi I’ve been on Pazopanib for about 18 months and it’s definitely been challenging at times, particularly in the beginning. My dose was reduced to 600mg and the side effects became much more manageable. I know some oncologists aren’t keen on doing this but you could always ask about it if things don’t improve. 

Yes I'm on 600mg/ day too. Seems to be the optimal dose for most folk.

Sue

Hi I also started with Pazopanib 800mg and then reduced to 600mg, but after recently scan I’ve been increased too 800mg again. 
Side effects do vary from sickness and tiredness. 
A lot of food taste weird or have a mental taste to them.

Everyone has different side effects to this medication, but joining this group helped me understand that I’m not alone and other people are in the same boat as me.  

Many thanks for your response. You do feel quite alone with all this. The Macmillan nurse input helps but not the same as hearing from others in the same or similar situation. 

Thanks so much. Being a new member is really helping, just the chance to share the problem with others is comforting.

Thanks so much for your detailed response. It really helps. I tolerated the 800 mg dose for the first month so well I began to wonder what the fuss was about. But I was still on a reducing dose of steroids after the brain tumours radiotherapy along with Omeprazol. Once these drugs stopped the sickness, loss of appetite and feeling just awful started. A week on just 1 mg of steroids did bring my appetite back but sleeping was difficult. So for the past couple of weeks I am trying without steroids. Next scans are not until end March so I will try to stick with 600mg in the hope it is helping the situation.

Thanks again 

Thank you so much for your reply and support. It will all help me stick it out but so much looking forward to that week's break so that I can eat and enjoy a meal. 

Thanks again 

Hi , try taking your steroids with breakfast if they are keeping u awake. I only take 0.5 mg/ day which affects my appetite but make sure I take them in the morning, so they don't keep me awake.

My next scans are also at the end of March, with results April 16 at my next clinic appointment, so we can share the scanxiety lol