All the best for Wednesday

Hi Ruth,

I have been on the Pazopanib for four and a quarter years so far.  I take the drugs as part of a trial so to date it has been six months on the drugs followed by three months off and repeat.  This means that for me the side effects have varied each time I go back onto them but always appear to be reducing.  I was on blood pressure tablets anyway so I did not experience any rise in that which is one of the most common side effects.  I did get very loose bowels but did not need to go to the loo more frequently or at short notice.  I suffered excessive wind which was painful but was moderated by avoiding certain foods.  I suffered hand and foot syndrome but by using moisturising cream and eventually wearing crocs I reduced the symptom and do not currently suffer it.  I have had some muscle cramps but not too badly.  I have not been able to drink more than two pints of beer at a time for the last two times I have taken the meds as that did give me diarrhoea but that has not troubled me this time.  This time I am back to excessive flatulence but have no idea which foods are causing it at the moment.

When I was diagnosed with renal clear cell cancer there was a choice of two TKI's, Pazopanib or Sunitinib and both of these carried a risk of significant side effects.  I think a lot of the research has gone into developing TKI's that are as effective or better than the previous generation but with fewer or less serious side effects and the medication that they are proposing for you is one of these which is also used for renal clear cell.

You are monitored very closely when you first go onto the medication with blood tests and blood pressure being checked regularly.  This can be a bit of a pain but for me they were able to do this at my local surgery so I didn't have to go to the hospital every time.  You are expected to ring the oncology department if you do think you are developing any of the symptoms so that they can take action, reducing the dose, giving you a break or prescribing something to counter the side effects.  It does mean that you have to read the list of side effects so that you recognise them, something I never normally do.  I usually prefer to take any medication and if I start to feel ill then I check the side effects, if I read the side effects first I am very capable of imagining that I am starting to suffer each and every one, especially the more serious ones!

The lists of side effects are very scary when you read them but it is important to remember that most of the major ones affect a small proportion of the people who take them.

I hope that this has offered a bit more reassurance to you,

All the best,

Gragon xx

Hi Gragon,

thank you for taking the time to reply in detail to me.

You have given me more confidence in trying this drug.

Best wishes 

Hi ruthjp,

I'm off for my routine oncology appointment soon and just wanted to wish you all the best for your RFA today.

love and hugs,

Gragon xx

Big hugs to you both

Gragon

ruthjp

xxxc

Thank you I am in my gown already to go to theatre.

will be glad when it is over.

good luck to Gragon 

Thanks for thinking of me .

hope the appointment goes well.

Hi,

My appointment was a routine one that I have every six weeks when they ask me how I am feeling (fine) any side effects (excessive flatulence at the moment) and give me my tablets.  Except that my tablets had not arrived.  I had been seen on time for a change at 10:45am but was then asked to go back at 2pm to collect my tablets.  I was meeting a friend for lunch so it wasn't too inconvenient but you would think they could get their bit of a routine appointment right!  I mean, I do my bit by not being ill!

Anyway sorted now.  A CT scan in 4 or 5 weeks then my next appointment after 6 weeks.

Hope everything has gone ok Ruth.

All the best,

Gragon x

It is always annoying when things don’t go as expected. Good you have the tablets now.

constant CTs and appointments are tiring.

i have recovered well and I should go home this afternoon after a check CT scan and do not have a chest drain this time. So one thing less to worry about. I as annoyed yesterday when it took them 4 hours and me ringing several times for pain relief I had bad pain in my back.

they did eventually poduce OxyContin and paracetamol and cyclzine which did work well

i feel much better this morning and have asked for paracetamol and ibuprofen .

i am glad it is over . I may have the left lung mets that are over 2 cm ablated in a couple of months and will go ahead with the lenvatinib application..

Ruth x

Hi 

i started on Lenvatinib in December. Have tolerated it ok. Had a couple of dose reductions to minimise side effects, mainly very upset stomach. I’m currently on 14mg. I have had muscle and joint aches, sore hands and feet and sore mouth but these side effects are intermittent and manageable with the right meds. The good news is it’s had a very good effect on my thyroid cancer with tumour markers reducing quickly and significantly. It’s not a walk in the park, but it could be a lot worse. Happy to chat further if you’d find it helpful. Best wishes. Fiona.    

Hi Fi!

Good to see you pop up again! Was thinking of you not too long ago.

Really glad to hear the Levatinib is working its magic on you, though I'm sorry you're getting a few side effects from it. 

Take care of yourself, and pop in anytime! 

Lass

XX