update

Yes, thanks Jo.

all went fairly well, unfortunately there was a tear and some spillage during the op but it was done keyhole.

he’s very sore but starting to get about. we’ve got a follow up on 5th of September to find out what’s what 

x

Hi

I hope you don't mind me messaging you.

My mum has just started taking pazopanib, this is only her 3rd day.

She had her right kidney removed in 2015, then a partial lobectomy last November. Her 6 monthly scan in June then showed lesions on her pancreas and liver, secondary to rcc. As you can appreciate we are all beside ourselves especially since the "specialists" missed these lesions on her scan after her lobectomy. We don't know what stage she is, but it is not curable, that's all I know and I know I shouldn't but looking online and reading through forums when cancer gets to the pancreas you have months left at best.

Anyway I am wondering how you were on pazopanib? My mum won't really admit if she feels unwell or anything, not to me anyway she tries to keep me in the dark for my own good but that just makes it worse. She is on 1 tablet a day 400mg I think. I saw her last night after only her 2nd tablet and she already looked so tired and exhausted. Is there anything that I can do to help? I have got her some CBD oil which she has been taking for a few weeks anyway but I've read this can help with nausea amongst other things.

Any advice would be really appreciated, take care

Kind regards

Jo

Hi Jo

I'm so sorry to hear that your Mum is unwell and I hope that I can help with the info that you need.

I had a nephrectomy in in 2014 and my secondaries were discovered in 2016. My main tumour is in my breastbone and I have one on my skull and a very small nodule on my lung. The main tumour in my breastbone was missed in my July scan and picked up in one I had specially done in October as I was reporting pain. Those months made no difference to my treatment or my outcome. I'm stage 4 incurable, but I don't plan on dying for a very long time. 

I'm not sure where you got your information re pancreatic mets - but this article seems to indicate the opposite and I'd be very encouraged by this https://bmccancer.biomedcentral.com/articles/10.1186/s12885-015-1050-2 All cancers are different so what applies to one type, doesn't necessarily apply to RCC.

I started on 400mg in the November and gradually moved up to 800mg over the course of the year, but didn't tolerate it well and I'm now on 600mg. More isn't better as far as outcome is concerned - what you can tolerate is what you need and if it's going to work, it will, even on a lower dose.

I very much doubt that she'll be feeling the side effects yet. If I have a treatment break it takes a week or so before anything kicks back in. Tired and exhausted I'd put down to stress and not sleeping properly at this stage, which could be pain related also - so I'd just make sure that she has that covered if it's not. I have co codamol 30/500 and it does me just fine when I need it, so possibly a good place to start. 

I've learned not to fight the tiredness. If you have a day where it's just not happening, then just let it be - the house etc can all wait. That can be difficult to do, but it means you genuinely have fewer days where you're wrecked. I've worked full time until this year and I'm now ready to take it easier so I'm going part time - what I'm trying to say is that if Pazopanib works for you, life simply carries on at a slightly slower pace.

If the CBD oil works for the nausea then that's great. I haven't tried it yet but it's been a consideration. I'm on my 4th anti nausea tablet - metaclopramide and it's been the best so far for me - though it's still not great. I'm having a more significant sickness reaction than they would expect - typically every other day, when less than once a week is more normal once you settle into treatment. I also get diarrhea about twice a week so I have to balance the anti nausea tablets with Loperamide. I lost a lot of weight to start with - I dropped from 10st 10lb to at my worst 8st 2lb, but following a two week break which really helped to settle me back in March I'm back up to 8st 12lb and holding well. I actually needed to lose it - so it's fine.

If the nausea kicks in, cooking is an issue. I can sometimes eat, but not cook, so I'd say if you can batch cook and freeze so you have healthy foods that can just be microwaved that would be useful for bad days. I also struggle to food shop sometimes if the nausea is having a real flare up. That sounds weird - but its the idea of food so even just an offer to do it if that becomes a trigger. You don't say if your Mum is on her own or not, so I'm not sure if this is something that she'd have help with anyway.

I had various side effects to start with - some of which settled after I had my first one week break.

Change in taste buds - this was crap to be honest - I found melon & ham a good thing to start me off if I really didn't feel like eating and ice cream and sorbet. They'd help to kickstart my appetite a little - and soup was good.

Sore feet and hands. Most people recommend Udderly, but I swear by Oilatum and I have both.

White hair and skin - if she's enjoying the sun - factor 50 - I always tanned at the drop of a hat, I'm now colourless and burn in 30 minutes, in the UK!!

Hot flushes (not menopause but Paz side effect) - I took black kohosh which was great - but had to stop as there have been no studies to see if there are any adverse reactions with the Pazopanib - they've recently settled again.

Permanently cold. As we go into winter I find I'm excessively cold, so obviously dress warmer than I used to, have the heating on more etc etc. I think I was the only person in the Caribbean last year walking round in a cashmere jumper haha!

Treatment breaks - I normally have these based around my health, so the first was because my white cell count dropped significantly, in the winter. I was given a week off. It has no bearing on outcome - so it's not something to be afraid of. The real positive was my taste buds came back to normal and my sore hands and feet stopped. I had a bowel bleed and had a week off and most recently I had quite a bad bowel irritation and had two weeks off - with amazing results - felt better almost instantly and the side effects were kept at bay for several months. That one taught me not to get so poorly before taking a break.

Practical help is wonderful. I'm currently feeling a little overwhelmed at the amount of work my garden needs and my house needs. We recently had a mains water leak and some work has been done, but not all of it - and there's dust everywhere. That type of physical work - housework / gardening - triggers my vomiting and therefore takes a long time - so I'd say practical help where possible.

Does your mum have specialist nurses? They are my go to people, not my consultant (who is great I have to say). I can contact them at any time with questions I have and what they don't know (which is not a lot) they'll find out. They're worth their weight in gold.

I hope some of that has helped. It seems like a bit of a ramble. Please just ask me anything at all if you need to.

Lots of luck to you and Mum

Hi Jo

Wow, thank you so much for this really detailed and helpful reply.

My mum isn't on her own, my dad is there although he's not really a cook! However it wouldn't bother me one bit to do a load of different meals to freeze for them, that's a good idea. My dad is able to go food shopping and collect any prescriptions so that's all good.

I do have a very random question though. My mum already dyes her hair, can she continue with this while on medication? I mentioned it to her and she hadn't even thought of it but she did mention it at Velindre when she collected her tablets and they didn't know but would look into it. I know this is such a stupid random thing but she would be really upset at the thought of having her hair white and I know it would make her feel better if she can continue to colour it just to try and look the same on the outside if you know what I mean.

She already has dry skin, we are a family of eczema sufferers so we have a lot of different creams and potions for that as I have it too so I think the sore hands and feet can hopefully be controlled.

I think she has a nurse but she isn't the type to ask for help she keeps saying she's going to get on their nerves. We were nagging her to ring her oncologist for an appointment when she hadn't heard in over 3 weeks after her initial results! It's all so frustrating. I'm hoping between me and my sister (we both only live a mile away) can keep a really close eye on her try and take her mind off things as best we can. It's so difficult as when I'm on my own I totally break down, I live alone so have no one to talk to and my mind goes into overdrive. When I'm around mum I do what I can to make her laugh and make things easier for her. My dad can do some things but he's never really had to look after the housework it's always been mum. He does the grass in the garden but that's about it. So again I can look after the pots and plants, and housework she won't have to worry about any of that but for now she is ok in herself just very tired so I don't want to stop her doing things while she still can.

Again thank you so much for your response and I'm glad to see that you are responding well to the medication and hopefully for many many more years too.

Take care

Jo

x

Hi Jo

I haven't dyed my hair as apparently iwhite is a great look and currently very fashionable haha! But yes, it's no problem to if you want to. I just figured it would take SO much looking after. more than colouring for greys that I couldn't be bothered with the time or expense!

I do however have my eyebrows done as they are also white and occassionally my eyelashes - though mascara takes care of those more often than not.

Bizarrely it's been one of the things that has thrown me most, so I can understand exactly where your Mum would be coming from with that. I don't look like me anymore and it's taken me a very long time to get used to that - I'm still not sure that I am to be honest - but it is what it is, so I'm just running with it and embracing the pale and interesting look ;-)

Jo also, Pazopanib is only prescribed 28 days at a time - so there are lots of opportunities to speak with your nurses - literally once a month every month. I suspect the more she sees them and builds a relationship the happier she'll be to use them for support, so just keep encouraging her to do so. Write down questions and take them to the monthly appointments. We are never ever rushed - sometimes on good months I'm in and out really quickly - and on rough months I'm longer - and both is fine. I've felt nothing other than totally supported in oncology all of the time - and never ever felt that my questions were foolish or that I was taking up someone elses time. 

Lovely to hear that she still has your Dad too. My husband really is a rock in all of this - it's basically teamwork.

Sorry to hear that you are feeling so sad. I hope you get some positive news as weeks go by. I pretty sure there's a carers support group on this forum that might be worth popping in to. I think it sometimes worse being on the other side of this - at least I know exactly what and how I feel - watching it must be incredibly difficult. Being able to chat to other carers would probably be invaluable.

Humour is definitely the best medicine though!
Take care

I’m on Pazopanib and I dye my hair. If your Mum does it herself it might be an idea to leave the solution on for longer. I find my hair is quite resistant to colour. It fades quite quickly as well which is another reason for doing it myself. Like Jo, my eyebrows are white so I use Gimme Brow by Benefit, which is quite subtle if you apply it gently.. If she goes to a beauty counter, I’m sure they’d be happy to try different colours for her. 

Hi Maybug thanks for your reply.

It's such a small thing in comparison but knowing that she can keep colouring her hair at home will comfort her, I hadn't even given the eyebrows a thought so that's also a great suggestion with brow pencils.

Hope the panzopanib is going well for you and that you aren't experiencing too many horrible symptoms.

Take care

Jo x

Hi Jo

I think she has been given 3 weeks worth of panzopanib and in the meantime should be getting another oncologist appointment probably to see how she is getting on with them, I don't know if they'd increase the dose that quickly or not. I'm just praying she doesn't get too poorly as she is so active all the time and still volunteers at her old place of work, it would really upset her and drive her crazy if she can't continue some normality. It's just a waiting and watching game at the moment and keeping everything crossed.

I'm glad that you have your husband to lean on.

Thank you for the all the advice you have given it's been amazing!

Take care

Jo x