Secondary kidney cancer mets to pancreas & liver

Hi Jo, if your mum's doing well on 400mg Pazopanib they will probably leave her on that dosage. I would tho expect them to do a scan soon to see how the mets are doing.

If u go to her appt with her next week, do ask about a  follow up scan - to check up on the mets

Btw, I haven't got pancreas mets, tho I have got them elsewhere ( see profile for details lol)

Sue x

HI Jo

I'm on Pazopanib and get scanned every three months and have done since I started on it three years ago.

I started on 400, went up to 600 then 800, didn't tolerate that and came back down to 600. I was on 400 for about 6 months before I was upped.

I have bone mets x 2. Pancreas is unusual, but I read somewhere recently that in RCC it's not a disaster the way pancreas can be for other cancers. Let me find that for you as it was quite reassuring.

Pazopanib I have been told is a drug that works for you or doesn't and you don't get spectacularly better results by being on a higher dose. I was desperately disappointed when I couldn't tolerate 800mg - but was assured that my outcome wouldn't be affected - and that definitely seems to be the case.

If she goes up to 600 and can't tolerate it - then she can come back down. It's worth a go, but not a disaster if it's not appropriate.

First appointment for me was a review of how I was feeling and side effects I was experiencing and that continues to be the case now too - alongside reviews of my scans as and when they come in.

Hope that helps a little.

Lots of luck to you and Mum

Hi Jo

Thanks for your reply that does help. If you could find that article you read about it spreading to pancreas I'd be grateful as I find it really hard to find much about it as you said it seems to be rare, typical that it's happening to us. As you say cancer on the pancreas is usually so fast and I'm petrified that's what is going to happen to Mum. I have only managed to see one article which was a bit over my head with all the jargon but there were parts that made me think ok we may have some breathing time here.

Mum's next appointment is Thursday, she has only been on pazopanib for 2 weeks, the only side effect she seems to have is her blood pressure is a little high, so a bit worried about that, apart from that she is eating well, still volunteering where she used to work, and still cooking Sunday dinner for the whole family, we've told her to take it easy but I think she feels she's giving in if she stops anything. She does get a bit tired but no more than usual she says. We are all watching her like hawks though.

I've heard that the higher dosage is hard to take and that it doesn't make much difference, hard to know why they do that but I guess there must be a reason. How did you find 600mg? Did you have any side effects when you were upped to this dosage? Hopefully they may give mum another scan date, and also more tablets as they only prescribed her 1 month I guess to see how she copes with it first.

Thank you again for your reply I'm really grateful for any information,

Take care

Jo x

Hi ,

Sorry that I have not responded earlier but I have been struggling with my laptop recently.  I found the following article click here which appears to me to indicate that having pancreatic mets from RCC can actually lengthen life expectancy compared to those of us who have advanced RCC but not to the pancreas?  Something about the mechanism of the cancer cells getting there can make people more receptive to treatment?

I'm afraid I don't understand half of it but bearing in mind that these studies tend to be out dated (this article was first published in 2015 but the patients studied were treated from 2006 to 2011) and survival rates have extended hugely since then I would say that things might be quite positive but if I were you I would ask your mums oncologist or specialist nurse to check this out to be certain.

The reason I looked was that I had a friend in the incurables group who had advanced breast cancer with mets to the pancreas.  Her breast cancer was more aggressive than RCC but she survived for about two and a half years after diagnosis with the pancreatic mets.  I realise that two and a half years is not long but it is much longer than most people who have pancreatic cancer as a primary.

If the link above does not work properly (I accessed it first via my mobile phone and connected no problem but then tried from a laptop and it wouldn't connect so I had to search for it) it can be found at     onlinelibrary.wiley.com/.../bju.13185   . 

I've been on Pazopanib for four years and ten months now and am getting on fine.

All the best to you and your family,

Gragon xx

Hi Gragon

Thanks for the link, it did work although it is a bit above my head also, they never seem to talk in layman terms do they?

I really appreciate your help, I'm too afraid to get any hopes up though. Mum has an appointment today with her oncologist I think it's to just talk about how she is getting on with the pazopanib which at the moment she seems good, slight high blood pressure so will see what they say about that..

Do you mind me asking what mg of pazopanib you are on and if you experience any side effects? It's just so we can be as prepared as possible for when / if they up her dosage as she is only on the 400mg at the moment. It is very reassuring that you have been on them for so long and are doing well, that's great news!

Take care

Jo x

Hi Jo

Found it - it was on my original reply to you a few weeks ago - but you were at such early stages I doubt you were able to take any of it in. So what I read was similar to Gragon - it's here https://bmccancer.biomedcentral.com/articles/10.1186/s12885-015-1050-2

I do have side effects on 600mg, but I had them on 400mg also - it's just a question of management.

I have high blood pressure, but it's managed with ramipril 10mg

I have an underactiive thyroid - managed by levothyroxine

I get sickness and diarrhea, managed by metoclopramide and loperamide. This is the trickiest for me. I've recently learned that I am more sick than they would expect, but for me it's manageable and a small price to pay. I'm on my 4th anti-nausea drug and this one works better for me than any of the previous I've tried. It's worth remembering that there are options for this if you need them and what you're initially given doesn't work well for your mum.

We only ever get a month at a time. Your mum will have monthly bloods to check kidney function, liver function, thyroid, white cell count etc etc. She needs to be in range for the following month to be prescribed, I've only once not been prescribed because of my bloods when my white cell count was low about three months into my treatment. I had one week off, another blood test, count was fine, back on.

I've been on Pazopanib 3 years now.

Jo, one thing I really want to get over is that I live a pretty much totally normal life. Yes I get tired sometimes, especially if the sickness and diarrhea are really playing up. But other than that it's pretty much business as usual.

I stopped working full time but I do work part time. I'm a photographer and I found 10 hour weddings too much physically. However, I still second shoot - so I'm not the main photographer, but the person who does the boys in the morning, gets a second angle on the ceremony and gets all the natural and detail photos. Typically these are 6 hour gigs, plus and hours drive to and from - so an 8 hour working day. And I still work in the office - I'm designing our new website as we speak.

Last year I got married and on honeymoon I learned to dive. I'm currently designing a rebuild of the ground floor of our house. Life goes on, just the same, fractionally slower pace. I'm 49, so younger than your mum, so while she might not be fancying a bit of scuba, once she gets into the swing of it, there's lots to feel good about. Cancer has a funny way of focussing your mind on the good in the here and now. The other thing I'd say is keep planning for the future. It's easy to stop and think there's no point, but there really, really is. Mentally it's such a positive thing to not feel written off and to have things to look forward to, big and small. We travel as much as possible, we're always looking for and planning our next break or holiday.

Hope your mum gets on ok today.

Hi Jo

Wow thank you so much for this, the only thing I'd disagree with you is that you work part time!! You seem busier than me and I do work full time

Mum had a follow up appointment this morning, her blood pressure is very high but they are going to monitor it. They have given her more tablets and another appointment in 2 weeks time to see if they can up her dose, fingers crossed it all goes well. She has been saying the last few days her head is in a whirl and can't remember things but then that could have been worrying about this appointment, she also looked really tired yesterday but again I know what she's like (I'm the same) she doesn't talk about her worries and stresses on her own so she is probably exhausted.

Just one question with regards to the monthly check ups of liver function, kidney function, white blood cell count etc are you told the results at this meeting? Or do you have to wait for the results to come in a few weeks?

I'm so glad you are doing so well on your medication, I'm glad you're getting on with everything as usual, I guess that's the best thing to do, Mum seems to be the same too, may be we can be slightly more optimistic after her next scan when we will know if the tablets are working. One thing I can say is she was suffering really bad with nerve pain in her shoulder and neck, burning sensation and all the doctors were baffled by it as nothing showed up on scans or xrays, however since starting pazopanib this pain has all but ceased so she's not being driven crazy by this anymore thankfully.

It's just a waiting game again at the moment so we'll see what the next appointment brings,

Take care

Jo x

Hi Jo

I think you're right about tiredness and stress being linked - I definitely don't sleep anywhere near as well as I used to. I got quite poorly at the start of the year - which ended up being bowel inflammation, but I was totally exhausted. I remember saying to my nurse that if I didn't sleep for 12 hours plus I was a total wreck. I realised after that I was in bed for 12 hours plus, but not sleeping. My sleep was ridiculously disturbed. I think at the start of something like this, that lack of quality sleep is inevitable, because your brain doesn't switch off. There could be an element of nervous exhaustion attached to the "head in a whirl".

I do however definitely have chemo brain. It's a genuine thing. I used to be exceptionally good at multi tasking - I now have to concentrate on one thing at a time - and really concentrate properly, especially if I'm trying to do something new. I find learning new things more difficult now. I definitely forget things - but I'm starting to think that I'm not concentrating when I'm hearing them, or learning them. I regularly feel things are in one ear and out the other. I also struggle to find words quite regularly. Our house can be like a game of charades when I'm talking sometimes, trying to get to the name of something.

Blood results I get at each meeting. The tests are always done no more than a week before the meeting, sometimes even the day before - and results are always available in time. They have to be as they won't prescribe without them.

Fingers crossed she does as well over the next couple of weeks!

Hi ,

I've been on 800mg daily from the start.  However I weighed about 27 stones to start with so it is distributed through a large body.

I suffered a few side effects to start with, sore feet and hands, diarrhoea, nausea, change in  taste.  My hair is now all white all over which I quite like.  After my original operation the trauma tipped me over into type 2 diabetes so I was already on blood pressure medication but that was increased a bit.  I now get very few side effect although I have recently developed an oedema in my abdomen wall where most of my tumours are.  If you read my profile you will see I am on a trial and I have to describe my side effects every six weeks and the research staff grade them from 1 to 5 with 5 being the worst.  I have not scored anything other than a one for at least two years now.

If you ask your mum's nurse you can get copies of all the test results to take away with you including the CT scan report.  If you want to pay you can actually get a CD of the scan but the only time I looked at mine it took me about half an hour to work out which was my chest and which was my back!  I have no chance of spotting my tumours although the biggest one is quite large.

The reports take some understanding to start with but the blood tests usually have any readings outside an expected range in bold type, the report also usually has the range.  The CT scan report I am more likely to have to look up medical terms but it means that I can study the results at my leisure and then e mail my nurses if I have any questions.

Most of the side effects can be managed but they are quite individual both in terms of which ones you might experience and how you resolve them but it is always worth asking for tips here.

It is important to remember that not everything your mum experiences will be due to cancer.   I suffered for a week once before recognising I had a cold and taking some lemsips.

Any way, time I was in my bed.

All the best,

Gragon xx

Hi Jo

It sounds very similar to what mum is going through she has trouble getting her point across for us to understand at times. She is on Pregabelin as well as pazopanib so her oncologist told her to gradually come off the pregabalin as that may be casuing some confusion.  Her oncologist though did say he's never heard of anyone suffering from confusion whilst on pazopanib although it mentions this as a possible side effect on the instructions! Sometimes I despair at the oncologist I really do. This last week she has felt a little nausea but she finds peppermints help and she's fine again. She is worried as her blood pressure is really high it was 204 over something I can't remember, however when she got home she took it her self and it had already come down to 170 which although still high is better than it was so I'm guessing nerves and fear play a big part in that. She also didn't find it very easy at Velindre to know where she had to go, a speaker shouted out names for people to go for bloods or to be weighed but there were no signs anywhere showing where to go for this so she got a bit het up. Also I think it upset her as she said there must have been about 100 people waiting, and she couldn't believe that so many people have cancer. She had her bloods taken yesterday but wasn't told anything about this from her oncologist so we're guessing it was ok. He said he would give her a double amount of tablets (1 month supply) but wants to see her in 2 weeks time to check her blood pressure again and possibly increase her dosage to 800mg from 400mg, which I'm worried about as I've seen a lot of people have really got poorly on this. Mum is only about 10stone so I think this high dose will hit her hard and she's rarely ill, never gets a cold even so it will be especially hard if she does start to get sick but we will deal with this if and when it happens.

Thank you for taking the time to read this, I really appreciate all the replies I'm getting from people who are experiencing this and their help on how to get through things. Oncologists mean the best but they aren't physically going though it.

Take care

Jo x