Pazopanib treatment update

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Just though I would drop a wee update in, i'm just about to start my third 28 day cycle of pazopanib. 

So far things have been going OK, I have a lot of the side effects but all are tolerable.

  • The first side effect to show up was high blood pressure within a day or two of starting the medication (800mg once a day every day), my blood pressure was pretty low to start with so it hasn't gone up to a level where i've needed medicating (they said if it goes over 150/90 to let them know). I monitor my own blood pressure daily.
  • My hair is now growing through white.
  • My sense of taste has changed, fruit is OK but my daily salad tastes like dirty laundry hahaha
  • I have some itchiness/rash on occassions but moisturise every day
  • My mouth gets a little sore every now and again, I was given Difflam mouthwash which helps. Anything spicy almost instantly brings soreness and ulcers - boo hoo I loved my curry!
  • I get diarrhoea sometimes but i've taken the advice to not eat (or drink) dairy, fatty stuff and alcohol (I've been teetotal for 3.5 years anyway), about once every ten days I need to take a loperamide tablet (onco dept provided 28 with my first cycle of meds).
  • One blood test indicated my thyroid was maybe going a little wonky but the last one was back in normal range
  • Dull headache every now and again.
  • Had a period of flashing in my peripheral vision but that's gone, I was under orders to contact GP if it got worse or go to A&E if it was outwith surgery hours.
  • I only experienced ocassional fatigue during the first three weeks of treatment
  • I've lost about 7 pounds in two months but weight is steady now and probably because my appetite hasn't been great since my taste went wonky

The onco team here in Scotland are looking after me amazingly well. Currently, every other Monday I have checks of blood pressure, urinanalysis, bloods for: full blood count, kidney function, liver function, thyroid function. Then every other thursday I have a phone call from the oncology team to discuss my blood results and see how i'm doing with the side effects. I have to have fortnightly checks for the first three months then if everything is still on an even keel I can go to monthly checks. I'm due a follow up CT scan after four cycles of meds which will be due December time. My brain scan in September came back all clear which was the best news i've heard all year.

I've been able to carry on my life in a pretty much normal way, I try to walk daily, do daily yoga, daily weights sessions and continue to work for myself. I've been off to see my elderly parents and went to Camp Kindling in Kent in August with my daughter and grandson which was fantastic. When away from home my daughters GP surgery was able to register me as a temporary patient to do my bloods etc which they then sent the results to my own surgery.

Any queries i've contacted my MacMillan nurse who has been totally amazing and goes above and beyond, can't speak highly enough of her.

  • Hi  

    Thanks very much for taking the time to give such a detailed account of your treatment and how it's affected you. I'm sure others will find this really helpful.

    It's great to see that you've been able to carry on with your life much as before, as I'm sure that helps recovery as well as your mental state.

    Wishing you all the best

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