Votrient (Pazopanib)

Hi Flamingo

I'm almost an egghead but it's not due to chemo. Eggheads, male or female, are lovely. 

Be happy

TVman xx

I certainly hope to have some hair by winter - eggheads may well be lovely and it makes showering etc incredibly easy. Mine fell out in February and I was absolutely freezing. Thank heaven for the ski hat fashion.

I search my scalp every day for signs of life but alas it is a pink desert still. I am not brave enough to go bareheaded so I wear my sun hat and live in fear of a big breeze.

I had the most beautiful walk along the southwest coastal path today in perfect weather .There is a lovely bay there where I used to swim with seals which loved people to play with them in the water. It is quite rough, remote and rocky and difficult to get to so never many people. Sadly all the sand washed off in the big winter storms we had a few years ago and it is now so rocky that getting into the sea has become almost impossible. There is a little more sand again this year. I might give it a try when it gets a little bit warmer and I have a bit more of my oomph back. 

Hope you are having a happy day too

flamingo

I can certainly empathise Was watching poldark last nigh,was with you losing your sunhat to a gust of wind, myself I lose it to mischievous little boys or the church youth, this answer is “Tit” tape!.  Was watching Poldark last night I know it’s not your county, but one must keep ones bonnet securely fixed in case a lone horseman comes to sweep you of your feet

No idea what happened there!

It is my county, Spider. Many of the village scenes are shot at the little bay next to me where I take the dog most days. I watched the filming for a while but oh my goodness it was boring to watch.

He doesn't actually ride that horse - it is a double that does the riding- I've seen them filming.

Tit tape, eh? Sounds uncomfortable - can't say I've ever used it. It was pretty windy walking today so I reverted to my ski hat for safety reasons.

Hope all hospital residents are fixed and released soon.

love

flamingo

Well, they chucked me out after just 2 days..the chest infection is quite bad, but is not an 'unusual' bug so loadsa antibiotics and rest at home for me.  There were quite a few immunosuppressed patients on the ward so they wanted me gone as quick as possible . Gotta pause the Pazopanib until my next clinic apt. on Friday. I have noticed that after only 2 days off it my mouth has improved considerably, so that is another definite side effect.

Happier being 'home' than in the hospital tho.

Wonder why home is in quotes? Well when all this kicked off my fiancee thought it best to move in together and sell my flat... it sold in 2 weeks so I'm now cohabitating again for the first time in 9 years. A strange feeling. We have brought forward the wedding to my birthday (7 Sept). We got engaged on hers and for the diagnosis just 5 days later. 

My better half, as she shall henceforth be known, fusses over me and worries far more than I do, all the while trying to fit work in there somewhere. More amazing than the best juggler you can imagine.

Anyhoo enough about me..hope you are all as well as can be under the circumstances and continuing to make every day a memory for your loved ones. 

Santa. (I'll post a pic when it's fully grown lol)

Congratulations! Home, cohabitating, someone to fuss over you and now a wedding date. Truly your cup overfloweth. 

Xx

Hi Jessie_15 and and anyone else out there.

I have been on pazopanib for three and a half years for RCC (kidney cancer).  I am on the Star trial which means I take the medication for 12 weeks, have a scan, take the meds for another 12 weeks and have another scan.  If the tumours have shrunk and remained stable at the second scan I then get to take a treatment break.  12 weeks into this and I have another scan.  To date the tumours have always started to regrow and I have gone back on the meds but in theory I remain on the break until there is evidence of re-growth.

Initially I experienced changed taste and a slight metallic flavour in my mouth.  Some soreness of the mouth (especially when brushing my teeth), sore hands and feet, increased and painful wind, upset stomach including stomach pain and very loose stools.  My blood pressure was fine but I was already on some medication for this.  I experienced a partially detached retina which is listed as a very rare side effect but it is not clear if this was the medication as I was in a high risk group for this anyway.  I also have white hair all over which slowly returns to a grey colour when I am on a treatment break.

I moved to a toothpaste with little flavouring, sensodyne and Oral B both do ones I can cope with although you can get some totally flavourless ones.  I use Bonjela I get any ulcers.  I find that wearing Crocs has got rid of the sore feet and I only wear shoes when I absolutely have to.  Loperamide (Imodium) can prevent the loose stools but I only use this I I am having to go to the toilet more times than usual as I find it then bungs me up for a few days.  The upset stomach I settled by nibbling fruit or biscuits.  After a bit of trial and error I discovered which foods are most likely to cause me problems, including broccoli, raw onion and (very unfortunately) beer.

I suffered some muscle cramps and other minor issues but it is not always clear what related to the medication and what to other medical issues,

The idea of the trial is that I get a break from the side effects and over the time I have taken it the side effects appear to have reduced.  The two constants are the white hair (which I like) and the upset stomach )which I don't).  I have been prescribed 800 mg daily from the start and although the tumours have grown and there is some slight spread I am happy that it continued to work.  I had my CT scan yesterday and see my oncologist next week and anticipate being back on the meds after that appointment.

If you type "Pazopanib" into the search box above you will find there have been lots of discussions regarding this.  I have only encountered them her or in the Kidney cancer group but they are probably in other groups as well.  Just check the date before you start responding to them.

Sorry it has taken me so long to respond but I haven't been on as much recently and then could not get the site up on either my laptop or mobile.

All the best,

Gragon xx

Hi Kim

Just wondering how you are doing, are you still on votrient?

Hey chesca, 

I've not seen Kim around recently. But looking through her profile, it looks like she might not be on it anymore. 

This was her last post on site back in March.... https://community.macmillan.org.uk/cancer_types/soft-tissue-sarcomas/f/soft-tissue-sarcomas-forum/177517/stage-4-fibromyoxoid-sarcoma

Lass

Xx