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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Pazopanib

sukiuk
Posted by

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 

buttercup01
Posted by

Hi @sukiuk

The side effects of Pazopanib may sound bad but don't forget not everyone gets all of them. They are also mostly manageable with meds.

Of the many folk in this group who are on Pazopanib, I'd say most of us cope with the side effects pretty well, incl loss of appetite/ taste by having treatment breaks every few months.

I've been on Pazopanib since 2013, with a break between 2016 and 2019, only going back on in Oct 2019, as a scan showed another met, which has since shrunk.

Rest assured the side effects are not as bad as they sound!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sukiuk
Posted by

Hi Buttercup01

Thank so much for replying to my message you don't know how much this means to me.  I have been in turmoil the last 10 days after having the paperwork and reading through it.  After reading all the side effects, I care for my 92 year old mother who dont know that the cancer has come back as it will finish her off, so I have had to put her into a care home as going through treatment I did not want her to see me bad and worry.  So on top of everything I got the worry of my mother as well.

I'm going to have to take the decision on taking Pazopanib.

If this virus was not around I would have felt better having a face to face meeting with the oncologist and my daughter would have come home to go to the appointment with me, but he took me by surprise over the phone, and said someone should be with me for the meeting but trying to explain we are in lock down and no one can come to my house .  It was you need these tablets told me the side effects, said will send paperwork out go and have bloods done, will send tablets out and to go for blood tests in a month.  Just so much to take in

Thanks again

Gragon
Posted by

Hi ,

I'm sorry to hear your news but welcome to the group.  It is very confusing and scary to start with as you don't really understand what is happening and what is going to happen next.  I can remember being told I was going to be offered Pazopanib but being told I had to read the full list of side effects before making my decision.  Apart from the fact that it was a long list it was petrifying.  Normally I don't read the possible side effects of medicines as I am likely to imagine I have all of them if I know what they are.  I generally prefer to take the approach that if I feel unwell I will look at the side effects and see if that explains it.  no chance of that this time.

As says no one gets all the side effects and not everyone suffers the same side effect to the same extent.  I am one of the lucky ones who suffers only minimal side effects now.  You will be carefully monitored initially with your blood pressure taken regularly and regular blood tests.  A lot of people suffer from an increase in blood pressure initially but this is very manageable with other medications.  I bought my own blood pressure test machine to save me having to go to the hospital or surgery so often and e mailed my results to my team.  You will be required to tell your team about any side effects, which is why they make you read them, but I would also suggest that if you do get any you also ask here about how to manage them.  This group tends to have more practical applications whereas a lot of the oncologists only look at the medical issues and although the nurses have experience they don't have the same experience as the people in this group.

When I started on the medication I was working full time and continued to do so for a few years before deciding to take early requirement on medical grounds and many others on the medication also continued to work.

If you have more questions before you sign the paperwork why not ring the Oncologist back and ask if it would be possible to discuss it a bit more.  You might want to write down your concerns and questions before you call them so that you don't forget to ask them.

If you already have all the information you need about the treatment but are concerned about the other implications for you then you can ask here but there re other options available for you as well.  It is a difficult time at the moment with the coronavirus and one other thing which I don't know if the oncologist explained but the medication will put you into the extremely vulnerable group if you were not before.  On the plus side it does mean that you can get your groceries delivered.

The Macmillan helpline is really good and they can offer information or support or even advice about your rights and finances.  They are on 0808 808 00 00 from 8am to 8pm.   Don't forget about your GP either.  They will get all the information from your consultant but probably know you better than your consultant at this time.  They can help and can also prescribe medication to reduce the anxiety or help you sleep.  One of the things that I know I struggled with to start with was the fact that I could still get more mundane illnesses that are not cancer or side effect related.  I was worried about some random symptoms the first spring after I started the medication until I realised that I had hay fever and wasn't about to keel over and die.

As you can see from my reply yours wasn't really that long a post.  I have seen (and posted) much longer ones myself.  I look forward to talking to you again soon.

Gragon x

buttercup01
Posted by

Hi sukiuk, I'm sorry you won't have anyone wiith you for your next appointment n it's so much to take in.

Do remember to write questions down in advance and have a pad and pen by the phone for the answers too.

It's enough for you to be coping with this,alone, apart from having your elderly mum to worry about too.

The bloods can be done at home. Ask your GP's surgery to organize it. I've just had to do exactly that.

Don't forget we in this group are here for you. You can also talk to the helpline on 0808 808 0000, Check open times, they were 8 till 8, every day but may have changed due to COVID 19

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sukiuk
Posted by

Hi Gragon

Thank you for your reply, I was wondering if it would make me in the vulnerable group, I asked the Oncologist regarding the virus but seemed to think I would be ok to go around but taking precautions but after reading through the lefelt and I did think I would be in the vulnerable group.

It is so hard having a consultation over the phone, I did ask if my daughter could have a word with him as she is away, and he told me no, as she would have taken the information in better than me at the moment as my head is in the shed.

I am worried about it affecting my blood pressure as I didnt know if I would be able to tell the signs if that went up.  The annoying thing is that I feel really fit and healthy had to have 2 new hips in a matter of 3 months and bounced straight back up, but I am useless in taking medication, can't take anything stronger than paracetamol as it makes me ill.

Another worry is that i booked a year ago to take my Grandchildren to Orlando in October, my yearly insurance runs out in June so feel that I am not going to find insurance now for the holiday, everything seems to be a challenge at the moment.

I also work full time and don't want to give work up, I am working at home for the moment since this virus, but I think that is the only thing that is keeping me together.

But the thing is if it was not for me falling and breaking my hip in October I would be none the wiser that the cancer had spread

Thank you so much fro replying to my post, it means so much

sukiuk
Posted by

Hi Buttercup01

I phoned my doctor today about having my bloods done before I start and sign the paperwork, but I have to go to the resource centre to have them done they gave me a time and told me it is staggered appointments 

I am going to ring the Oncologist on Wednesday as my daughter is going to send me a list of things to ask him.

Thank you again 

buttercup01
Posted by

Hi @sukiuk, Pazopanib sent my blood pressure sky high n I've been on blood pressure meds since then.

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sukiuk
Posted by

Hi Buttercup01

That is one of my concerns, how will I know if my blood pressure has gone up as cant see me having a check up , as the doctor said got to phone with any symptoms etc, I find that really worrying

Sue

buttercup01
Posted by

I would guess your blood pressure will go up anyway, with all the worrying!

Can you get them to do it when u have your bloods done, then you've got a baseline to go on?

I got a cheap DIY machine from Lloyd's chemist for about £20. Worth seeing if they supply them online?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

I have been on pazopanib for over five years now but if I remember correctly I used to attend two weekly to have my blood pressure and blood tests done.  I ended up getting my own blood pressure machine as my BP always went up at the doctor's and I regularly had to sit quietly for five minutes before it came down again.

If your blood pressure is a problem I think that it occurs very quickly in which case you would be calling your GP,  or in the very worst case, an ambulance or the risks are more long term in which case a two weekly check is determined to be sufficient.

I know that Macmillan do small financial grants if needed but I seem to remember they may not cover medical costs but as said a basic BP machine doesn't cast much.

I see no reason that you need to give up work.  I don't know if you are aware that cancer is covered by the disability discrimination law and you can expect your employer to make reasonable adjustments to allow you to continue to do your job.

This is the sort of thing that the Macmillan helpline can advise you on.  I did and it meant that when I talked to my employer I knew the sort of adjustments I could as for.  At other times they have also assisted me to know what my benefits entitlement is and to apply for it and also advising me of what I could expect to receive if i took early retirement on medical grounds.  I first called them for some information but was impressed by how supportive and understanding they were.   They are an excellent resource to get lots on information and advice in one place very quickly.

I am with my family and we are if anything a bit too much on top of each other.  It must be really difficult to be on your own anyway at the moment but even worse when you are going through your cancer diagnosis.  I am quite a private person but when I was told my cancer returned I needed to talk to my wife quite a lot to try and make sense of it.  Do you talk to your daughter regularly on the phone or a video app?  Are you in England and is your daughter near, as from tomorrow she could drive to to see you but would be expected to stay two meters away.  At least it would be face to face.

I've just realised I'm doing the typical man thing and offering practical solutions that you may be quite aware of or able to work out for yourself when what you need is the emotional support.  I know that practical can be reassuring but I hope that I can offer more than that.

A lot of us on the site have experiences similar to yours giving us enough in common to understand some of what you are going through.  It is a scary and lonely place to start with but it does get better.  I found the practicalities helpful as it gave me something to focus on rather than spending all the time worrying about what my future was.  It isn't denial but it is exhausting to spend all you time worrying about the cancer.  When I got tired of being worried I tried to distract myself.  I have always read a lot and found that if the book was good enough I could still lose myself in it for a few hours, similarly a good movie could do the same.

Once i had a treatment plan i also called my other relatives and explained what was going on and what sort of support i wanted and what i didn't want.  I didn't want tales of miracle cures or stories of other people who have overcome totally different types of cancer to mine.  Once we got past that we were able to have surprisingly normal conversations which was really good for me.  I know others have dealt with things differently but it depends on what sort of support you prefer and what those around you are able to offer.

I'm afraid that i can't offer it in person but on the site it is quite common to offer an intangible but heartfelt hug.  I'd like to be able to do that for you.

Love and a big hug,

Gragon

sukiuk
Posted by

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 

Gragon
Posted by

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

sukiuk
Posted by

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

Gragon
Posted by

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