Pazopanib

Hi Betty123, My hubby has been taking pazopanib for 18 months for Kidney cancer,  he has tumours in his lung, spine , and the chestwall , I believe pazopanib is widely used for renal cancer,  to be honest he has been up and down whilst taking it with the side effects , sore feet ,  nausea , plus his hair has turn white, his oncologist has now stopped the pazopanib as the chestwall tumour has increased in size and had radiotherapy last week so it was deemed the pazopanib is now ineffective,  he has been told there are other medications he can try so hopefully we will find something,  I hope the pazopanib works for you as I know people have been taking it for many years . Take care x

You can look up pazo on the Macmillan site and also the uk cancer research site and both confirm it's used for RCC.   My understanding is that there is a huge range of drugs out there, depending on whether the objective is to stop the growth (for fast growing cancers) or control the cancer (for slow growing cancers).   Pazo is a growth inhibitor drug.    

The drugs you chose as your level 1 treatment can affect the options available later.  Not all drug options are available at all stages - it depends on the licencing criteria.  eg I was offered Pembro/axitinib, effective for 60%, but what is licensed afterwards is very limited atm.  I went for ipi/nivo, statistically a less effective level 1 drug for the many, but with more level 2 options.  Big Fan.    I'm on the Control-the-cancer objective, not the stop-the-growth objective.   My kidney cancer has also spread to the lungs.  

I’ve now been on Pazopanib for 3 years following the removal of my right kidney that was surrounded by a large tumour. This occurred in 2017 and in 2019 my regular monitoring scans showed a new area of cancer had broken out in my pelvis. This was a spread of the cancerous renal cells that remain in the body from their original site. Of course I was devastated having already gone through so much both physically (I had other renal complications too) and emotionally as were my family. My hair turned white within weeks and I suffered all the side effects except vomiting. I coped badly to start off with especially with mouth sores and complete distortion with my sense of taste but I knew I had to get on with it. I’ve leaned to live with this now and have many periods of ups and downs but the bouts of diarrhoea coupled with lower abdominal pain are the worst. These lower abdominal pains always bring doubt and worry of another area being effected by this horrible disease and post scan results (every 3 months) bring great relief when they come back positive. My Oncologist who’s brilliant and very re-assuring at my consultations has said I can take short breaks (5 days max) from the medication when things get to bad. Within about 3 days into these breaks the diarrhoea has stopped and the abdominal pain recedes and I now last around 6-7 weeks between these breaks. I’m due my next consultation on my 65th birthday next week when my latest scan results will be revealed, I hope my experiences are re-assuring to you despite the negatives, I’m still going strong and leading a reasonably normal life.

Thanks for replying. It helps to know that there are other people who have taken this drug and though the side effects sound quite bad I can only hope that I wont get all of them at once.  My hair is already white so not worried about the colour of my hair more if I lost it but I suppose that's a small price to pay if I can get a few more years of living.

Hope your husband gets another medication that suits him soon.

Take care the both of you and thanks again for replying as I don't feel quite so alone, though I have a good husband, family and friends you don't know how you will feel until it happens to you.

Betty

Thanks for replying to me.  I have looked up the drug on the Macmillan site and been given pages of information by my Oncologist.  Though it all sounds very daunting I'm hopeful that it will help slow the growths in my lungs.

I just hope that I don't get all the side effects all at once but I'm preparing myself for the worst and hoping for the best.  Taking each day as it comes at the moment and making the most of them until I start my treatment.

Take care

Betty

Thanks for replying to me as it all helps knowing that others are going through the same thing that I  am.  I have a wonderful husband, family and friends but it's not until you get cancer do you know how it really feels like inside.  Have days when I feel a bit down so trying to stay very busy and making the most of each day.  Could do with a bit more sunshine as that always cheers us all up.

My hair is already nearly white but I do worry a bit about losing it but a small price to pay if I can get a few more years with my family.

You sound very positive and can only hope that I will cope as well as your sound as though you do.  

Take care

Betty

I would suggest to try not to think about the side effects.  Even though each drug lists loads and loads, you are unlikely to get all or them or more than one.  I was reading up on what drugs I would choose, and the trial info - there were reams and reams of side effects.  They HAVE to tell you about them all.  Also, I remember the oncologist talking a lot about side effects too.  But the most pragmatic approach was from the nurse specialists in oncology/haematoogy "people generally tolerate this drug well" he said.  I am on ipi/nivo.  

Thanks again for replying.  Until I start treatment I'm trying to keep busy and making the most of each day.

Take care

Betty