Sunitinib

Hi  not many on Sunitinib these days,more in Pazopanib,, its sister drug and more current.

I've been on Pazopanib since 2013,'with a break of 2.5 years. I have regular breaks when my taste buds go down the drain- usually only a week at a time. I know other ppl in the group do similar things. 

Sue

Hi chunks , my husband just started on sunitinib last week after 18months on immunotherapy.  I can't offer advice but hope the 2 on 1 off works for you to reduce toxicity  . 

Is this your 1st treatment  ? 

My husband was unable to have his kidney and tumour re6as it's quite aggressive and has lots of metastasis so we were pleased he got so long on immunotherapy.  We're hoping he can tolerate sunitinib but as his tumours growing rapidly and his blood results not great we are watching how others get on with it , are you on the 50mg dose ? My husband put on 37.5mg to start due to bloods.

Good luck with the new routine 

Hi WCD

Thankyou for response.

Is your husband starting cycle 4 on 2 off? I did 4 cycles of the above before moving to 2 on 1 off

Had left Kidney removed February 2020, then part of spine due to metastasised. Radiotherapy straight after then metastasised in liver so put onto Sunitinib. I am on 50mg and seems to be doing as it should.

Hoping your husband takes to it

Hi chunks , yes he's started 4 on 2 off so far he's fone but it's only been 10days and we're well aware the toxicity builds up .  We have lots of concerns as he already has high blood pressure and worried the treatment will raise it more and hes type 1 diabetic and it can affect blood sugars but you just got to go with it and hope for the best xx

Hi. I’ve been on Sutent for 18 months I have two tumour sites on my spine, both of which are still stable. These originated from kidney cancer 4 years ago and I had my left kidney removed. My first two cycles were on 50mg but due to side effects reduced to 37.5 with 2 weeks on, then a 1 week break. My top 2 tips are: drink lots of water and get exercise. I’m convinced that both the water and the exercise keep toxicity under control. I bought an e-bike a year ago and highly recommend it. Just last week I crossed the 1000 mile marker on the bike. I get plenty of exercise and fresh air on it, but no excessive strain on the hills. I’m a school principal and still working. However I’m 58 and have recently decided to take long term leave to focus on my health. Covid has actually benefitted me in the sense that school life has been less busy but I now want to enjoy whatever time I have left. I also got married last year. I should have said my 3rd top tip is to marry a compassionate, loving, kind and resilient wife or husband!

There is hope. Therapies are improving all the time and it’s an active area or research. Live life as fully as you can and don’t let the cancer define you. My next plan is to get a big shed and start a woodwork workshop.
Stay busy, fight hard, don’t indulge in self pity, follow doctor’s orders and you may beat all the odds! That’s my plan. 

Hi, thanks for response. 
Like you, I also had left kidney removed then cancer metastasised on spine. Was very aggressive and needed removing. On Sunitinib to manage the metastatics in Liver.

I have found exercise limited to walking due to the restrictions in my back (cage fitted)

I try to drink 2 to 3 litres of water per day.

Totally agree with tip 3, my wife is my rock and without her, I’m sure my story would be a completely different one.

I am my own worse enemy, unable to grasp the concept that there are now limitations to abilities, causing unnecessary aggravation. Particularly at work, I now understand that the person before is now gone, this is the new me and only my actions will change anything.

I am currently on 50mg of Sunitinib, two weeks into cycle 5

Good luck in your future venture