Pazopanib

I had my kidney out 5 years ago and have been fine.  October last year I had a fall and broke my hip so was taken into hospital.  Whilst they were operating they noticed a mass in my other hip, I was sent for scans over Xmas and early Jan they called me in to tell me that there was cancer in my left hip and my right pelvis.  Apparently these areas has shown up on my scans for the last few years but nothing was mentioned to me.   I was taken into hospital within 2 weeks for a hip replacement, which confirmed that It was cancer.  They have now passed me over to the Oncologist who phoned me last week to start me on Pazopanib this was a phone consultation and just told it was cancer in my pelvis and this is the treatment I needed .  My head is all over the place at the moment as the side effects sounds really bad, and living alone I feel really afraid.  I have not signed the paperwork yet as had a lot going on the past week, I just dont know what I am doing.  If this virus were not around and in lockdown my daughter would have come home and gone to see the consultant with me.  Sorry for the long post 

  • Hi Gragon

    Thank you so much for the reply.  Yes my main concern is my blood pressure as it has always been perfect, always been so fit and healthy and never took any medication.   Had my kidney removed 5 years ago and was back working after 2 weeks. just concerned living on my own I would not see the signs of my blood pressure  going up and it could be so dangerous.  I am sure my mother has a blood pressure monitor down her house will go and have a look a bit later.  If this virus was not around I could go to the nurse to have my blood pressure checked regularly for peace of mind but the way things are they are not open and only taking on emergency cases.  What were the signs you had that your blood pressure went up?  Did it go up straight away after taking your first tablet?

    Unfortunately my daughter lives up the lake district and I am in Wales 5.5 hours away, so I think it will be sometime before my daughter can travel down here, but love her she is on the phone all the time and been on top of this.   She is the one that has contacted my surgeons etc. got my operation to have my hip removed within 3 weeks, she just won't let go  but the Oncologist refuses to talk to her and will not do a joint call between the 3 of us, that is what we are finding hard, as I am not taking in all the information.  My son only lives 5 miles from me and he is fantastic, but not allowed to meet at my house  if I have got to stay in and shield.

    As for work I can do so much from home but would have to go into work once in a while as there are a few things that would have to be done from the office, so hopefully i would have a few good days.  Stupid question but can you still drive on this drug?

    Thank you for all the information you have provided and it is nice to know that I have got someone to talk to that is in the same boat as me

    Thank you for the big hug I really need it.

    Sue 

  • Hi Sue,

    There are no stupid questions at all in this forum and I have driven every since being prescribed with no problem.  It does not restrict you from driving.  Thank goodness as I am 30 miles from my hospital.

    I was already on tablets for blood pressure before I started these meds but to be honest I didn't have any symptoms.  In fact the initial operation  tipped me into diabetes and as a diabetic they like your blood pressure and cholesterol to be lower so I was ok one day but the same blood pressure was too high the next.  When I went on the meds two years later the blood pressure increased within the first two weeks monitoring and they simply increased the dose from the BP readings.  Again I noticed no difference.

    I googled it and Dr Google says that there rarely are symptoms and it is normally picked up from BP readings.  Like I said earlier I think the risks are mainly long term and the monitoring you will undergo will pick up any concerns.  Even as things stand I would expect you to be monitored about every two weeks to start with.  However, if you are concerned you might want to ask your GP surgery if the have a BP machine that you could borrow for the first couple of months.  Surgeries sometimes have one or two available in case they want a patient to monitor their BP over a few times a day or overnight.

    The shielding issue is a difficult one.  I'm living with my mil, son and wife so for me it is impossible to follow the full guidance.  I also go out for walks as I need to get out for my mental health.  You just need to work out what works for you.

    All the best,

    Gragon

  • Hi

    Sorry been quiet the last few days I have been on the phone to another Oncologist looking at options as there was only one option given and that was the tablets I asked would they look into radiotherapy.  To be fair this new oncologist even let my daughter ring him and have a word with what was going on

    They have come back to me today, looked at my scan and there is only a small amount of cancer on my pelvis and apparently easy to hit with Radiotherapy, so that is the road we are going to go down for the moment.  They told me I will be having a scan then 5 days of radiation then a scan after that to see if I need to take the tablets.

    So will keep you all informed

    thank you all for being there for me at this difficult time

    Sue

  • Thank you for letting us know Sue  .  I'm pleased that you managed to get a second opinion and that they have been much more obliging for you.

    All the best with your treatment.  Please let us know when you are due to start it.

    All the best,

    Gragon x

  • 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
  • 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.
  • 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
  • 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.
  • 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
  • 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.