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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Pazopanib

Ian436
Posted by

Hi folks, I’ve just joined group today. I had my left kidney 5 years ago. The op was successful, and I thought that was me cured. I’ve just found out cancer has reappeared in my pancreas. I am devastated, angry, and petrified. I’ve to go for a biopsy, then be told what treatment ( probably tki ) I will receive. I’ve also been told I might not get anything until condition worsens. I thought another op but was told quality of life having your pancreas removed is not good. The side effects of tki doesn’t look good either. Can I wor, drive, go on holiday, have a normal life. Not knowing anything about this is terrible. When my consultant told me I couldn’t concentrate on anything and all I was told was a blur. It’s hard enough talking to a Doctor, worse when they are wearing a face mask. I know new treatments are discovered all the time, I just hope whatever I am prescribed works, without too much problems. Hope to hear back from someone with some encouraging info.

Ian436
buttercup01
Posted by

Hi welcome to the community n to this group in party. I'm sorry to hear your cancer has reappeared.

 The side effects of tkis are such that not everyone gets all of them. Many of the group members are on Pazopanib and different people get different things. You should b able to work, drive, go on holiday n have a reasonably normal llfe.

One of the things I have is it affects my sense of taste, but I get round that by having a week off the meds,every so often - Xmas, Easter etc. My oncologist said I could do 3 weeks on n 1 week off if I wanted to.

I daresay other members will tell you their side effects too, but also that they're bearable with.

You're right in that new treatments are being developed all the  time, incl some combo immunotherapy ones.

Once you have a treatment plan, things,will feel much more settled. Try n take someone with you when u go for your biopsy results, so they can note down what's said.

Stop panicking.

I've been living with my kidney cancer for 15 years and it's a slow grower, compared to other cancers.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Ian436
Posted by

Hi, my first post today was pretty bad. I am a 62 year old male. I had my left kidney removed 5 years ago by radical nephrectomy. The op went well and all of my scans have been clear up till now. I’m now told the cancer has reappeared in my pancreas. Apparently there was something there in 2018 but the radiologist only noticed it now as it has grown. I’m waiting to go for biopsy to find out exactly what’s what, and then treatment to follow. I might not get anything until condition worsens, which to me is bizarre. I’ve never had any noticeable symptoms, my kidney disease was found by accident. I’m told if I get treatment it will be tki  oral chemo. The side effects look really bad, although I know it’s different strokes for different folks. Will I be able to continue to work, drive, go on holiday, live a normal life, I don’t know. Will my diet have to change, what can I do and what can’t I do, or what do I have to avoid ? Having to wait is terrible. Oncologist told me removal of pancreas is not recommended as quality of life thereafter is poor, with diabetes, loss of weight, common. I am normally very decisive and make a decision and stick by it, now I don’t know what to expect. Hope someone with similar or knowledge of similar problem can get in touch. Sorry to sound so negative, but difficult to be up beat just now.

Ian436
buttercup01
Posted by

Hello again

Yes, it is hard to be up beat, especially when you've just been told your cancer's spread.

You might try ringing the helpline on 0808 808 0000, usually 8am to 8pm, but may be different at the moment?

Have u a cancer nurse specialist whom you can speak to?

They're generally very supportive too.

Please,see my previous,answer re Pazopanib.

It's the,waiting that's ,the worst.

Hang on in there.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Ian436
Posted by

Thank you so much for your replies. I don’t have a nurse just now mb get one after I’ve been to the Beatson in Glasgow. The only thing worse than knowing is not knowing. In limbo just now. I will try and gee myself up. I will have a nice single malt tonight to take my mind of things. Hope we can stay in touch. It’s usually me who does the talking to others to resolve things, I never thought life would turn around like this. Take care

Ian436
buttercup01
Posted by

I've sent u a friend request

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sukiuk
Posted by

Hi Gragon

Thank you for the message, I am feeling more myself now, head been in the shed the last few weeks, but at least I know now the path I am going down, Radio first and then if that dont clear the cancer on to the tablets, I have resigned myself about taking them.  My new oncologist has been fantastic listening to all my concerns.

My next problem is Holiday Insurance, mine has run out and now the cancer has returned got to find if there is a company out there that will insure me.  We have booked to go to Orlando in October, whether it will go ahead we dont know as yet but have got to get insurance just incase, so that is my next thing.

It is great to know there are people on here that you can talk to.

Thanks for replying

Sue 

buttercup01
Posted by

There's.a Group deals with travel insurance on the site.

If  u can't find find it, try the helpline on 0808 808 0000 8am to 8pm.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sukiuk
Posted by

Thanks Buttercup01

I have just joined that group

Sue 

Gragon
Posted by

.

Hi Sue,

It's great that you can discuss stuff with your oncologist, it makes such a difference.  I am lucky to be on a trial so regardless of which oncologist I see I can ring or e mail the research nurses who are great at sorting things out for me.

Ah the double edged joy that is sorting out holiday insurance.  I have not gone to the US only Europe so I'm afraid my knowledge is no use in this case.  What I would say is don't be shocked by the quotes.  My first quote came back as more than the cost of the family holiday and only covered me.  Since then I have managed to find more reasonable companies and now get an annual Europe only policy for me, my wife and son for under £100.  I get that through Eurotunnel which now requires me to book a trip with them so i suppose the real cost would be higher but we go to France most years, the only difference now is that we take the shuttle rather than the car ferry.

I also have a holiday booked for the back end of August in Croatia and i am hopeful it will still go ahead although i think that most insurances now exclude covid 19 type illnesses.  Fortunately Croatia has one of the lower rates of infection and my ehic will cover me.  I have to pay the balance by the end of June but it is covered by ABTA so it should be ok.  I am paying on my credit card as well just to be safe.

Good luck with the radiotherapy, I have no personal experience but understand that in some cases it is really effective.

Don't forget to let us know how you get on.

All the best,

Gragon x