Kidney cancer

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

Pazopanib Votrient

DaddiosDaughter
Posted by

Hey everyone, my dad is due to start on Pazopanib tomorrow and I'm looking for some more information on it if possible, when he saw the consultant a few weeks ago (may 1st) he was offered this, which they referred to as 'targeted' therapy, or a mixture of two different immunotherapies, which they said were stronger but he would have a worse quality of life, as we are already struggling to keep his hypercalcemia under control. My dad chose to try this Pazopanib first, but then dads blood test results came back with his calcium being extremely high again (which we already suspected) and he was admitted right there and then. He was only discharged last night, so I've not really had a chance to do the reading and research I wanted to do about Pazopanib to get a better understanding of it. They did give us an information leaflet but in all the chaos that followed I dont think I took the information in properly and now I'm not sure where it was put. Can anyone help please? I've searched the forum and read some threads but it's mostly talking about breaks in treatment, that isnt something that was mentioned in the meeting so I guess it's something I need to ask tomorrow? I guess what I'm hoping to find out is:-

what exactly is Pazopanib, how does it work? (in simple terms please)

what are the most common side effects people seem to have?

does everyone have breaks in the treatment?

is there anything I should look out for?

is there any ways I can make this easier for my dad?

Thank you for anyone who can help, I will keep reading threads in the mean time x I will post all my dads information below in case it helps x

Dad’s medical information:-

12cm large necrotic right renal tumour with necrotic hilar lymph node,

18mm renal thrombus peaking into the inferior vena cava

Likely direct invasion of the right liver lobe

Radiological stage T4 N1 M1

Bone scan confirms metastases in left upper humerus, spine (S1) and skull (left frontal bone)

Pathological fracture of left upper humerus due to bone met

CT shows scattered pulmonary nodules plus 1mm lytic lesion in left frontal lobe bone

Right renal biopsy results - Clear Cell Renal Cell Carcinoma WHO grade 2

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Health:-

Epileptic with grand mal seizures but fit free for 30 years as well controlled with medication.

2 x DVTs 9 years ago

eGFR > 90lm/min

Performance status 1

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Treatment so far: -

Hospitalised twice so far with Hypercalcemia from the met in left upper humerus

5 x Radiotherapy treatments on metastases in left upper humerus

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Currently on: - Analgesic medication for pain in left upper humerus,

denosumab injections to control the hypercalcemia

laxatives and anti sickness to control the effects of the hypercalcemia

clexane injections treatment dose for the thrombus

starting pazopanib (votrient) targeted therapy 15/05/2019

Tello
Posted by

Hello,

I have been on pazopanib for four years and I have lived an almost normal life during those years. Because it is a treatment where you take a tablet in the morning and then forget about it life becomes quite easy.

The side effects have been reasonably mild: hair turned white and thinned out a bit, occasionally I became hoarse, the skin was easily irritated and reacted to the sun (keep out of the sun in other words), the blood pressure shot up and I stopped taking the pills for a few days every month in order to bring the body back to normal, but apart from that there was no real break.  This went on for four years until I suddenly had an occlusion, a kind of thrombosis in my right eye last Christmas, caused by  blood pressure which in turn was caused by the Pazopanib. They have stopped that medicine now and the next thing will be Nivulumbab or Opdivo as it is also called.

My right kidney was removed in 2007 so I feel very lucky to be still alive leading an almost normal life.

I wish you success with the pazopanib.

Tello

Maybug
Posted by

I’m also on Pazopanib and although I found it difficult on 800mg I’m managing very well on 600. I think people’s experiences vary a lot but it might be an idea to let your Dad’s gp know he’s taking it so they can help with any side effects. You can also ring the Macmillan information line and ask to speak to a nurse. I found that very helpful. 

Gragon
Posted by

Hi ,

I think I'm the one who has been referring to the treatment breaks.  I only get these because I am on a trial as to how the drug is taken to see if they can improve how long it remains effective for and reduce the side effects.

Pazopanib works by preventing the tumours from growing a decent blood supply which by preventing them from building new blood vessels.  By reducing the blood supply you stop the tumour from thriving and it can reduce the size of the tumour and prevent it from growing.  It cannot totally get rid of the tumour but can reduce it by up to about a third.  It varies in a number of ways from person to person.  Some people have such severe side effects that they cannot continue on the medication.  Some people can tolerate a reduced dose which can also be effective.  Some people it only remains effective for over a short period and for others (including me) it appears to work for a comparatively long period.  I have now been on it for four and a half years.

I was made to read the full list of potential side effects before I left the hospital with my medication and it is a long list of side effects some of which are serious.  However, no-one gets all these side effects and some of them are very uncommon.  Everyone I know of has hair that has gone white as a side effect.  I was already on blood pressure tablets so I was not affected by this but it is quite common.  I did get digestive problems, stomach ache, excessive and painful wind, very loose bowel movements.  I suffered from hand and foot syndrome where your hands and feet get very sensitive and painful.  I also got occasional muscle cramps and did not sleep as well waking up wide awake at strange hours although that could have been the psychological effect of having cancer.  The digestive issues can be moderated by finding which foods trigger it.  In my case broccoli and raw onion are two of the worst culprits.  I now wear crocs all the time and expose my feet to the air as much as possible and this has reduced the hand and foot problems.  Initially I also used a moisturising cream which helped.  I also have to avoid the sun or use a high factor sunscreen.

Your dad will be closely monitored initially and will be expected to report any side effects to his oncology team.  He will be given a list of telephone numbers for people he can contact including out of hours if he has any concerns.  It is helpful if you have a cancer care nurse or someone similar who you can contact for more general questions.

Don't underestimate how much dealing with the non cancer related things can help.  The single biggest thing for me was sorting out my finances so that I only had to worry about the cancer and not how I could afford to pay the bills or how my family would cope if I wasn't there.  Obviously I don't know your Dad's situation but if you ask him you might find out what he is worried about and be able to help him work out what to do.  For my finances I talked to the financial advisors on the Macmillan helpline.

All the best to you and your dad.

Gragon x

Maybug
Posted by

My oncologist is happy for me to have short treatment breaks. In fact, she suggested that I have up to two weeks off over Christmas. I’m hoping to have another break to go on holiday next month. Obviously, the clinicians can’t stop you having a break but I prefer to do it by agreement. 

DaddiosDaughter
Posted by

Heya guys, thank you so much for taking the time to reply and to help with the advice, was a bit of a strange one in the end, as i spent the evening reading up on the Pazopanib as much as I could because that was the plan, and when we got there they put him on Tivozanib (Fotivda) instead. They have decided that because he is already having so many problems with the hypercalcemia, the Pazopanib side effects may be too much for him, and the Tivozanib may be better tollerated? From what I understand they do the same job? and its a newer version of the same drug but with less intense side effects? Sorry if I have got that wrong? x

Also because dad is now on the denosumab injections because of the hypercalcemia, it has made him hypocalcemic and hes now on calium tablets too, I think it's going to be a big balancing act trying to keep him well enough to tollerate the treatments. He's had two tablets so far, hes doing 3 weeks on, 1 week off and is to be reviewed in 2 weeks. 19 different medications all together, he is so tired from it all :( just wish I could help x

, thank you for the reply, I'm really glad the treatment worked so well for so long and I wish you as much success with the new one x the side effects of the tivosanib are very similar to the pazopanib from what I have read so I will watch out for them all, thank you for the advice x

I have written a list of all the 19 meds and dropped them off with the GP after reading your reply hun thank you, I tried to explain them to them over the phone but there was just so many different things hes on it was much easier to let them have a copy of the full list x I have used the information line once before when we got the biopsy results and they were very helpful, thank you for the advice x

ahh thank you, that makes sense, hope the trial is working well and it continues to be effective x from what I could work out this other drug works the same way in stopping the blood vessels from feeding the cancer and growing? and thats what causes delays in healing? Dad wasn't really able to read the side effects at the appointment as he is so tired from the medications he was struggling to stay awake. We were there for 6 and a half hours in the end, I have gone through all the side effects with him from reading online and explained the ones for the pazopanib on the way there and from what the consultant said this one has very similar effects so he kind of knew from that, if that makes sense. Dad's struggling to have an appetite at all right now, so hes been put on build up drinks to help him, thank you for the advice about the food, it isnt something I would have thought about really x

Thanks again guys, your help is very appreciated x

jk131
Posted by

Hi dadiosdaughter

I did reply to your last post to me, but don’t think I put your user name! Sorry... 

Your journey seems very similar to my own situation. My husband was / is taking Fotivida. Because of side effects he stopped treatment for 10 Days then restarted again, but unfortunately after 4 days his symptoms worsened. Today we saw the oncology consultant who decided to lower the dose. He starts this tomorrow! We were told that so far it has been shrinking the tumours. That was the good news..

Then we got to the next part of our appointment and everything went downhill very quickly! As I mentioned in a update post he was considering surgery for a Harrington + Hip package by a orthopaedic surgeon who we were referred to by one of the oncology team. The oncology consultant advised today this was not a viable option and the risks involved were to great! Unfortunately he would have needed to stop the Fotivda treatment which would have meant the cancer would not have been under control. Then we were given the devastating news that at best we are looking at is a 18 Month prognosis. It seems totally unreal to be told that yes the drug is working and then to be given this devastating news. My son and daughter were at this appointment today to hear everything the consultant put to us. My daughter especially is heartbroken, she has our 5 year old granddaughter. The day before my husbands diagnosis he had booked a family holiday for August  which the insurance company had to honour as it was booked before diagnosis. I asked the question if my husband would be well enough to travel, we were advised they thought it might be to much for him. It has not really sunk in for me yet, I feel completely numb.

I do hope your father does well on the medication and you start to see much improvement over the coming weeks.

Take Care

maureen x

Jo300
Posted by

Hi DaddiosDaughter

I'm on Pazopanib, so as the side effects are similar I'll give you what I've learned and hope it's useful! I did the opposite way round to most people. I started on 400mg, went up to 600mg then 800mg. I didn't tolerate 800 well, so I@m back down to 600mg and that's currently going well.

In 2 1/2 years I've had 4 treatment breaks. The first my WBC count dropped too low - you can only really find that out through the monthly blood tests if you don't actually have an infection. I had a week off.

2nd was a bowel bleed. I had to call that in immediately and was given a week off for that too.

3rd was a week off for my wedding :)

4th was two weeks off in March as I had started to have significant digestive issues - sick several times a day, cramps, trapped gas, diarrhea, losing weight and exhaustion. They think my bowel was inflamed. That break was incredible, I started to feel better within two days and I've only been sick three times in total since - and put a stone on as I'm stuffing my face while I can!

My taste buds changed initially, but corrected after the first break.
I occassionally suffer with tender hands and feet. I use Oilatum from Boots and it's fantastic.
White hair like everyone else.
Very sensitive skin in the sun. I've found P20 Factor 50 is excellent
Nausea - I've been through 4 different anti nausea tablets to find one that works for me. I'm on Metoclopramide. I find on days that I struggle to eat melon is a good place to start, or strawberry ice cream - and I've never had a sweet tooth!

diarrhea - Loperimide for that

Nose bleeds - not excessive and manageable
Tiredness - you just have to go with it sometimes rather than try to battle it.

High Blood pressure - I'm on Ramipril to correct it
Thyroid went out and I'm on Levothyroxine for that.

The only other thing that I definitely have that no-one tells you about is chemo brain.
I'm not daft, but last week I happily told my husband I'd seen two penguins in the tree (woodpeckers). I find that I lose words and I'm unable to complete sentences without a great deal of thought sometimes. I've also noticed my ability to multi task is diminished.

I think that's all. I feel like it's all very manageable most of the time. I've learned in the last couple of months not to be scared of taking the break if suggested, it doesn't impact the effectiveness of the treatment and makes a huge difference to your wellbeing.

Hope that helps a bit!

Jo
x
Maybug
Posted by

As Jo has found, sometimes a break can resolve some of the troubling issues. One of the things that really got me down was a very sore tongue. It cleared up within two days of starting the break and didn’t come back when I started taking the tablets again. At the moment I have medication for high blood pressure and diarrhoea, both caused by Pazopanib. My thyroid function went haywire at first but has settled down now. Tiredness is really the only thing that bothers me but I try to get out every day, even if it’s only to the shops - or the hospital! 

sueCC
Posted by

Just want to send my love to both  and , you both amaze me. I know there are a lot of people going threw what you both are but i couldn't just scroll past without commenting. Hugs to all of you Xx

Sue Xx
Jo300
Posted by

- ah thank you! You just get on with it don't you? I'm here and making the most of life and that's all any of us can do :) xx

Jo
x
DaddiosDaughter
Posted by

Thank you for your reply Maureen, I'm really sorry it's taken me so long to reply, the days are all merging into one right now there is so much to do between helping my dad, my mum and my children x Thank you for sharing yours and your husbands journey with me, the Fotivida / Tivozanib seems to be going really well for my dad so far but I am constantly on edge that things could change very rapidly. What dose did they start your husband on originally? My dad has just finished his first cycle of 21 tablets at a dose of 1340 microgram a day and hes just started his first week off now. He's not been too bad with side effect, no mouth ulcers or anything yet but he is tired, that however, could be because he's got hypercalcemia again :( x

I'm so sorry to hear that your husband can no longer have the surgery that was offered :( they said from the start to dad that they couldnt save his arm but having something as an option and then having it taken away again seems more cruel :( The more time goes by the more I hate this horrible illness :( x Im so so sorry you have been given such a short time together, they have told my dad without treatment he has a matter of months, with treatment hopefully over a year but he hasnt had any scans yet after starting treatment to even know if it is working

My thoughts are with you and the family, we have been trying to fulfil a bucket list this last few months since finding out, just making the most of any memories we can make. It's a horrible place to be but every moment is precious and I hope you all get many of them together x Thank you for your thoughts for my dad, it means a lot x

thank you for your reply :) x It seems a lot of these treatments can have extreme side effects some times really, I'm glad you have found a level that's working for you x My dad is sick quite a lot to be honest but it seems to be the symptoms of the hypercalcemia rather than anything from the cancer meds so far. He is however having problems with high potassium levels? Seems to have some a bit out of the blue and not really sure why x Dad is on a fair few antisickness things at the moment and has a combination of laxatives and Loperimide depending how things are affecting him on that prticular day. 20 medications in total now, its a bit difficult to track but trying to get to grips with it all x I will update again to let you know how he gets on with the next cycle of treatment, thanks again x

thanks for replying hun, they did say a sore mouth is one of the main side effects of this tablet but hes been okay so far thankfully, they gave him a mouthwash to use but he hasnt needed it so far x hope your treatment is going well x

Thank you everyone <3 xxx

buttercup01
Posted by

Thinking of u n your dad.

Hugs xx

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
jk131
Posted by

Hi dadiosdaughter

sorry I haven’t replied sooner. So much has happened since your reply. I will get back to you a.s.a.p.

Maureen 

DaddiosDaughter
Posted by

No worries Maureen I hope you are okay? My dad has been extremely poorly recently, to the point they thought he only had days left at one point. He’s doing better than he was now, back at Christie’s Wednesday, hopefully they will continue treatment x let me know how you are all doing when you get a chance xx