Chronic headaches with Pazopanib???

Hi Jo, am obviously  not a medic but it does sound like your mum's headaches could b withdrawal symptoms from the pregabalin. Pazopanib can sometimes give you headaches ( see packet insert) tho it's never given me them - I was on it from 2013 to 2016 n have just gone back after a treatment break of 3.5 years 

Is the nurse  a practice nurse? She's probably just being on the safe side, arranging an MRI. How long is your mum expected to stay off the Pazopanib while waiting for the MRI?!

I'd advise her to contact her oncologist's secretary or cancer nurse specialist if she's lucky enough to have one, so that she can ask the oncologist about the headaches - preferably before the nurse phones her back on Monday.

Hope that helps. 

Hi Buttercup

Thanks for replying.

Mum saw an oncologist nurse yesterday, is that the same as a cancer nurse specialist? She told mum to stop the pazopanib until Monday to see if the headaches stop. If they don't then it's up to mum if she wants to start taking them again, which I hope she does!! Mum did say that this nurse had to keep leaving her to go and ask a doctor for his opinion on different things. Honestly I don't have much faith in any of the people she has seen, it's as if it's all guess work.

I agree with you I am more than convinced that she is having withdrawals from the pregabalin (praying that I'm right on this). She hasn't been told how to wean off them just that she needs to, she's had no help on this at all!

I'm getting a little frustrated by everything, her blood pressure is sky high which can also cause bad headaches, mum is already on blood pressure tablets but they haven't said anything about changing them or looking into that.

I'm starting to feel that no one really cares or can be bothered, her oncologist is on holiday. She will be having an MRI on her head before her next appointment which is 14th November and they will give her results of the MRI at this appointment hopefully.

I feel that everything is so unfair for mum at the moment. I want her to feel well, but I don't like the thought of her stopping the pazopanib which is hopefully helping the cancer, I wish she could stop the pregabalin but that is making her feel lousy, her head is very muzzy today but she doesn't have the banging pains.

It seems everywhere and everyone we turn to no one can help us. Her oncologist also said he's never heard of anyone suffering with muzzy heads on pazopanib although it does state this as a side effect. Mum had to point out to him about her high blood pressure he just said oh yes we will monitor that.

I've asked her to go back to her doctors who originally prescribed the pregabalin but she's going to leave that and listen to what the oncologist nurse said instead. The oncologist nurse is going to ring mum on Monday to see how she is. I hate not being able to do anything as I said before I just don't feel these specialists have a clue as to what they are doing and don't like the thought of mum being in their hands.

Sorry for the rant,I have had more helpful information off all of you lovely people, that is why I do think this pregabalin is the main source of the problem however in the meantime we just have to wait and see yet again as to what happens.

Take care,

Jo x

Hi Jo, yes I would say the " oncologist nurse" was a cancer nurse specialist. If it were me I think I'd have asked to see the actual oncologist tbh. But then I am a stroppy cow lol!

They used to check my BP every time I had a clinic appt n swiftly put me on Amlodipine, a BP lowering drug, as Pazopanib is well known for raising your BP.

I am fortunate in that I have an oncologist I know n trust. (The cancer nurse specialist left  over 2 years ago n hasn't been replaced)

You might want to " ask an expert",  either by posting under that heading or ringing the helpline number on 0808 808 0000, 8am to 8pm, 7 days a week.

They can help re coming off the Pregabalin, I'm sure.

Would your mum b happy for u to go with her to her next appointments? U could offer to make notes of any answers to questions she might have.My husband does this for me.

Good luck!

Hi Buttercup,

The oncologist is away on holiday so we couldn't speak to him either but we do have an email address for him so I think another email to him will have to be sent to find out what is going on.

My dad goes with my mum, she doesn't like anyone asking questions as she thinks it gets on their nerves, I know it doesn't but that's her thought on it which is annoying.. My dad does still ask and we also give him questions to ask on our behalf, but I get the impression they aren't telling us everything and my mum wouldn't let me go with her.

I'm not sure what BP tablets mum is on, but they don't seem to be bothered about it even though it's 190 over 94. It was 214 at her first appointment!! Her lowest has been 174 which she takes regularly at home.

Thanks for the suggestions of asking an expert and the phone number, I'll get right onto this.

Thanks x

Any luck with the helpline?

Hi Jojo7377

As you mum was already on BP medication, go back to the GP who prescribed it. The same for the pregabalin. The GP who put her on that needs to be involved in weaning her off it and give her full instructions of how to do so. Oncology don't necessarily take over everything. My BP is monitored, but it's my GP who prescribes and makes adjustments to my BP meds. My GP also manages my thyroid meds (paz related) and my pain meds (cancer related) and my immodium (paz related)

I've had no headaches with Pazopanib. I did have them when my BP went up. So I think you could be on the right track with the weaning and the BP, but you need to get the GP fully involved.

The MRI is a belt and braces to be safe. The fact that they're doing it is a real positive that they're taking it seriously. It doesn't mean it is serious, it means they're being cautious on her behalf which is exactly what you want.

My oncology nurses I have full faith in. They will regularly refer to the oncologist or registrar if they need to check something during a consultation and that too is a positive. I've recently had unexplained swollen finger joints and there were several back and forth queries over that. Pazopanib is, in the big scheme of things, a new drug, so it's inevitable that they haven't come across various scenarios before. Cross referencing with the rest of the team is a good thing.

I can only imagine how difficult this is for you as you can't be at the appointments so everything is second hand. It must be especially difficult feeling that you don't have the full picture.

If you can get her to the Gp and start to take control of some of the things that actually are controllable and measurable things might feel a bit better.

Good luck.

Well said

Well said .

Oops, posted twice again. Must curb my impatience lol

Thanks Jo this has been helpful.

I've told mum she needs to go to her doctor regarding the pregabalin but she's going to wait and see what the nurse says to her on Monday. Would the oncologist or nurse tell mum to make an appointment with her GP to try a different tablet in relation to her high BP? I'm guessing they would but all they have said to her is that they will monitor it for now.

Mum has stopped the pazopanib since Thursday on the advice of her oncology nurse, on a plus side her headaches are remarkably better but she can't stop the pazopanib for good She is going to wait until she speaks to the nurse but she is under the impression that she will have to go on a different cancer tablet, but I'm still not convinced this is the answer as I think it's pregabalin mixing with the pazopanib causing these headaches in the first place.

It's sometimes like banging your head against a wall taking to mum. I'm asking her to go to her doctors still as they need to help wean her off the pregabalin no matter what but she's blurting all her trust in the oncologist and nurse who aren't trained in this as much they are trained in cancer.

I did ring the helpline yesterday and as lovely and helpful as they were they did advise her to go to the GP but mum just won't listen to me. I have to question her very carefully as she gets quite angry about everything. She doesn't do being ill at all as she rarely even has a cold so this is all so draining for her. I've noticed her getting impatient with family members and I appreciate she must be petrified but we are also trying to help but it's like she won't listen to what we have to say as in go back to your doctor, she will only listen to her oncologist or nurse.

Our next approach is going to be emailing her oncologist again and ask him to tell her she needs to see her doctor about the pregabalin that way she may listen, unfortunately he is on holiday for another week. She will have been off the pazopanib for over a week by then and this scares me as in this time the cancer will only get worse.

Thank you all so much for your help and advice, I am doing my best to get mum to listen but I get the feeling she's giving up on everything at the moment.

Take care 

Jox

Poor Jojo7377, this I guess is your mum trying to have some kind of control over what's happening. She is probably scared stiff n maybe in denial a bit too? 

Fortunately, kidney cancer's  a slow grower, compared to other cancers.

Hang in there!