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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

Jo300
Posted by

 Hi Sue and Ian

So to come so late to this post. Hope you are both feeling Ok, the mental shock of being told it’s come back is just awful, heart breaking.

I started on Paz nearly 4 years ago and lead a pretty near normal life. It turns out that for me I’m more reactive in my stomach and bowel than the norm, so if I get too unwell I simply take a couple of weeks off treatment, have a bit of a reset and start again and it works a treat. It did take me a little while to settle into the drug, I wasn’t great for the first few months, but perseverance worked a treat.

my BP is higher now. Sue, like you mine was always perfect, if actually not a little low. Once COVID passes and we’re back to face to face consults, your BP and weight will probably be taken at your consult every four weeks. In the meantime a cheapy BP monitor is fine. If your mum hasn’t got one and you’re worried about going out then amazon have them. This would be ideal https://www.amazon.co.uk/Medical-UA-611-Upper-Pressure-Monitor/dp/B00JQ7SZLO/ref=pd_lpo_200_img_1/259-9244432-3798443?_encoding=UTF8&pd_rd_i=B00JQ7SZLO&pd_rd_r=ffad2725-d5c5-4756-9f62-dff3be38891f&pd_rd_w=PVzJf&pd_rd_wg=ZsjSF&pf_rd_p=7b8e3b03-1439-4489-abd4-4a138cf4eca6&pf_rd_r=86K4G2NN7TGGZ7C21F45&psc=1&refRID=86K4G2NN7TGGZ7C21F45

Taking drugs is a new way of thinking. I never used to take anything. Now I just pour whatever is necessary down my neck before I go to bed and be done with it. Don’t forget that if anything really doesn’t agree with you there are nearly always alternatives. I’m on my 4th anti sickness as the others just didn’t work for me and I know is on a really good one.

My thyroid went out, it’s another possible side effect, it was picked up in my monthly bloods and also I was aware I was overly tired, so now I take something for that too. That just works.

Now, if all that still sounds a bit crap, in the time that I’ve had this, I have continued to work, initially full time and now part time, because I want to do more than just work, I got married, Sue, I went to Orlando 2 years ago, great fun, we had our honeymoon in Aruba and Bonaire, I learned to dive, I’ve been to Europe probably about 12 times, so travel is totally possible. 

I think that you asked early on about being vulnerable during Covid and the answer to that is yes. We’re currently shielding, but remember that shielding advice is advice, not legislation, so like Gragon, I’ve been out continuously walking our dog in very quiet spots where I know I’m safe, but I’m shopping online.

I have said before that I actually think I’m living my best life right now. We’re incurable, not terminal, that’s a huge difference and once you get your head round it, you’ll see what I mean. 

When I first arrived here I was so worried it would all be other people’s sad stories and I wouldn’t cope with it, but what I actually found was real hope. I had a three month break this year and I knew that was Ok because I know Gragon has that all the time. I went from thinking I’d be lucky to have 5 years to assuming I’ll have at least as many as has already come through and still going totally strong. My sons 18th was my first milestone, that’s been and gone, then my 50th, that’s in a month and I’m not even thinking of that as a milestone any more, I’m now eyeing up 60 and hopefully way longer.

Once you get passed the initial horror, and it is a horror, and you settle into the routine, you will hopefully start to feel calmer and feel that this is more manageable than it probably feels right now.

Will keep fingers crossed for you both that things get moving quickly so that you can start to feel more in control again very soon.

And sorry for such a long post but hope there’s something useful in there. 

Jo
x
Ian436
Posted by

Jo, that was an inspiring post. I now prefer incurable to terminal. Coming to terms with this is a shock, for me and my family and friends. Reading posts from you will help enormously, as long as I think of the positives rather than the negative. As I’ve said it was serendipity that led to me discovering my cancer 5 years ago, so I should mb think I was lucky it was discovered before it was too late. Hopefully the same will apply here.

Ian

Ian436
sukiuk
Posted by

Hi Jo

Thanks you so much for your positive e mail, my head has been right in the shed since I heard that the cancer had gone to my hip and pelvis and receiving the paperwork for the medication stating Palliative care. I had a total hip replacement in February so the cancer has gone away from that area, I am such a positive person, but this really knocked me back and it didn't help that the consultation was over the phone, it was take these tablets there is nothing else you can do.  I read through all the information really worried about the side effects but thought if that is my only option I would start the treatment.  It was strange as the day I had the letter I had a phone call from a care home that my mother age 92 had a place for her, it was if everything fell into place.  I didn't want my mother to know that the cancer had come back and if I was going to be ill with the treatment did not want her to see me like that so had no alternative but to put Mam into care as I was her carer.

3 weeks later as I had not signed the paperwork I had a call from a different oncologist who was fantastic, I told him all my concerns, then asked him if I could have radiology on the area, he said he would look into it, and the next day he came back and said yes it was a spot that they could work on, and said that hopefully they can keep me off the medication for a bit longer as long if it works.  Had my scan yesterday, and hopefully a week of radiotherapy in 2 weeks time then another scan. so fingers crossed.  I know I am going to have to go on this treatment down the line but the longer I can hold off the better, but having really good reports now about it so I have put my mind to rest, that that will be the way forward.

How did you manage with insurance for your holiday Jo, as my insurance has run out and they would not insure me again.  I really want to go to Orlando with the grandchildren, always loved my holidays abroad and just felt I would not be able to go again.

Thank you again ever so much for putting my mind at ease

Sue 

buttercup01
Posted by

Hi , don't forget you are unlikely to get all the side effects of Pazopanib. Many ppl in this group are on it n we all get different batches of side effects. 

The main onesi n my case  are bright, white straight hair  n sense  of  taste disturbed (:dealt with by having a week off every so often)

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 Buttercup

Got to laugh but when I spoke to the Oncologist I said about the white hair, and he said when he walks into a room he can tell straight away that people that are on this medication by their hair and said it is even the eyebrows turn white .  I asked him if I could dye my hair and he said no problem.  Does it make your hair straight as well as mine is curly.  Mind you that side effect is not the end of the world, my sister lost all her hair on Chemo.

Thanks for replying means so much

Sue