Secondary in shoulder and hip

Hi metal57

Although I haven't taken either of these drugs I noticed that your post hadn't any replies. I typed 'Pazopanib (Votrient)' and also 'Fotivda' into the search facility in this group but only came across one very old post mentioning these drugs.

However, if you do the same in the kidney cancer group you'll find quite a lot of people who have mentioned taking these drugs and the side effects they did or didn't experience.

I have also found this information from Macmillan about Pazopanib (Votrient) and it's potential side effects and this small amount of information about tivozanib (Fotivda).

Wishing you all the best

x

Thanks for the reply and links I will have a look at the kidney forum

I’ve been on Pazopanib for nearly three years with my main met in my breastbone. I’m totally stable and doing well.  Yes there are side effects, but they’ve all been pretty manageable. Vomiting and  diarrhoea are two of the main issues, I’ve lost 2 1/2 stone over the years, but got a new wardrobe so that was handy. Tiredness, partly linked to the worst stomach issues. High blood pressure, managed by Ramipril, thyroid issues, managed by levothyroxine, initially taste changes, but after a one week break they subsided, sore hands and feet, managed using Lotil from Boots, but that’s also gone. White hair, eyebrows, eyelashes, use you imagination for the rest   Very sun sensitive skin. I used to tan very easily, now I use factor 50 and can still burn in 30 minutes. I’ve had to take three breaks, one for a too low white cell count, one for a small bowel bleed, one for bowel inflammation. Always felt really well after the breaks (1, 1 and 2 weeks respectively)

Think that’s about it but hope you find more useful info in the kidney forum!

Hi, like Jo, I've been on Pazopanib for some years tho currently on a treatment break of 3+ years. I don't have any bone mets. The side effects I had were bright white straight thinner  hair - I originally had auburn v curly hair - sickness n sometimes diarrhoea, loss of taste/ food tasting like cardboard, high blood pressure. 

The sickness was dealt with by meds which I took with the Pazopanib, the diarrhoea by Loperamil ( similar to Imodium), the taste changes by having a break of about a week every few months , eg at Xmas time . I initially lost weight but then went on steroids for a brain secondary so  that put paid to that.  I had to go on Amlodipine for high blood pressure.

Hope that helps

Hi metal, my dad like you has kidney cancer and one of the mets is in the shoulder and damaged it all :( he has a pathological fracture along the left humerus and not a lot of his shoulder remains at all x I’m so glad they have been able to operate and fit a prosthetic shoulder to help you x 

The first plan with my Dad was to put him on Pazopanib but because he’s been so unwell and symptomatic from the bone mets they thought the Fotivda (Tivozanib) would be much better. The way it was explained to us was that TiVo is basically a more upto date version of Pazopanib. It has similar results clinically but without as many side effects and I must say dad has coped really well with the TiVo itself. He’s been having a nightmare with hypercalcemia and facing them stopping treatment because of that but his side effects from TiVo have been barely anything. He had diarrhoea from them once, so far no sore feet, hands or mouth but they gave a cream and mouthwash as a precaution. His blood pressure has remained the same etc x whichever you choose I wish you the best and will try to follow your journey x 

Thanks for the reply. I have now had three radiotherapy sessions with just a little nausea. After two more sessions Ithen have a break due to going on holiday My next appointment is on 22 August, when they will make a final decision on which meds to try. At the moment I have no pain whatsoever and my weight has gone up from 72kg to 83 kg in around 10 weeks. Best of luck to your dad and I hope he is able to continue on Forivda.