Pazopanib and wind. Is there anything that can help?

Hi Fraser,

Here is some of my experience, for what it is worth.

I am a fairly fit 52yo man with a relatively healthy lifestyle. I was diagnosed out of the blue with advanced kidney cancer with lung metastases and started taking Pazobanib on 1st May, with steroid Dexamethasone and stomach protector Omeprazole.

Prior to this I had suffered with digestive problems for some years (intolerant tummy and flatulence, which I discovered was a reaction to WHEAT and ONIONS, probably a specific carbohydrate called Fructans). This actually masked to some extent my slow downward health spiral that was actually due to the cancer. Bizarrely, taking the anti-inflammatory steroid Dexamethasone in the last few weeks appears to have actually improved my digestion, though. So I may have had a slightly inflamed gut before all this started.

Personally I would avoid thinking in terms of "something to take" to solve the problem, and look at what you are doing now which can be changed. As I understand it, flatulence generally stems from bacteria in the large intestine fermenting undigested carbohydrates. This is perfectly normal, but the wrong sort of carbohydrates, slow sluggish gut or not producing the right sort of digestive enzymes can make it all worse.

I would suggest taking certain foods out of his diet on a weekly trial basis, starting with the "usual suspects":

• Anything dairy for a week: milk, yoghurt, cheese (lactose)

• Wheat and Onions (Fructans... but it also takes out Gluten which seems to slow my gut down too) (switching to say white basmati rice or oats, rather than wheat, for carbs) ( and wheat is in EVERYTHING you buy)

• Fructose (foods best identified using the FODMAP app available on the Apple or Google store)

• Reduce fat consumption for a week

• Avoid high fibre foods for a week including: wholemeal bread and rice, too much fresh fruit and veg if not used to it etc etc High fibre slows intestinal transit time and seems to promote fermentation

• Only one coffee in the morning. Some people say coffee helps peristalsis, some say it is a gut aggravator. I cut it out, then re-introduced it, and it made no difference. My one mug of fresh brew a day is a highlight, so it's staying :)

If your husband's liver is not producing bile effectively, it might be affecting his digestion of fats, as well as slowing down intestinal transit time by reducing peristalsis, the slow gut movement that moves food through the intestine. This slowing in turn gives bacteria more time to ferment undigested carbs in the large colon, causing flatulence. There might be a drug available from your GP that helps with peristalsis, I am not sure.

Alternatively, many people with IBS have found relief by following the FODMAP diet, which essentially identifies and takes out difficult to digest carbs. This was developed by a scientist called Sue Shepherd at Monash University in Australia, and seems to provide results for a great many people, myself included. They have a mobile phone app that has improved dramatically recently, giving a traffic light system for most foods (green-yellow-red) for the 4 most common FODMAP intolerances: Oligo-saccharides, Fructose, Polyols and Lactose.

I have switched to a diet of wholly fresh food now, with no packet food. I myself just avoid wheat and onions, and have reduced my high dairy diet to a better level, and it has mostly solved my problem. I have discovered that most packet foods have additives that also often effect me (e.g. soy lecithin). My digestion and general health has dramatically improved. I am also taking the time to catnap during the day (sudden onset fatigue is one of my symptoms), and generally keeping relaxed to the best of my ability, which is likely to also help my digestion.

My food schedule is 8am small breakfast, 10am larger breakfast (take Dexamethasone), 3pm large lunch, 7pm small supper, 9pm snack and then I take the Pazobanib and Omeprazole between 11pm and midnight. I used to take it in the morning, but my Doctors moved it to the evening for some reason. I also eat snacks in between! As you can see I eat like a horse, but then I have quite a bit of weight to put back on. I listen to my body quite carefully, and this schedule seems to agree with me in terms of digestion and going to the loo. And flatulence has returned to acceptable levels. 

I guess your eating and drug taking regime may very well be different depending on your own circumstances. I have read in a number of reliable references that eating small portions, and often throughout the day, is better than sticking to the traditional three meals, one of which is a large one.

I am not medically trained, but am pragmatically educated and do my own research to help my own condition.

I hope this helps.

All the very best with the scan results, Lux

Hi Lux,

Thank you for taking the time to reply to my question. You have certainly got your diet management under control. I'll pass on your information and hopefully we'll get something sorted that will help him.

He was also given Omeprazole to take with the Pazopanib and Metoclopramide to help with his nausea but when he took the Omeprazole it made him violently sick so he's off that now.

I think what one of the hardest things is, is that it's all still fairly new to us so we're still finding things out and taking each day as it comes. Having this forum where people are so friendly, helpful and understanding is a great comfort.

If there's anything I can do or say that will help you, please let me know.

Fraser

Hi Frazer,

You you try Colpermin capsules which are not a drug they are simple Peppermint capsules I have suffered with I BS all my life (77yrs young ) and found these really helpful,

 The hospital was\and as given me, one called Mintec capsules same thing, same strength 0.2ml

I had terrible pain from  the wind, in hospital,  so these where given me for the wind and i was also given Buscopan 10mg Tablets for the actual pain,

Hope this helps  

Jean x 

Hi Jean,

Thank you for your reply and for your suggestions. I've ordered the Mintec capsules so we'll see if they work. Fingers crossed!

He has taken Buscopan previously but it's just the wind that's upsetting his stomach at the moment.

Thank you again for taking the time to reply to me.

Fraser x

Thank you for such detailed and useful info. Great reply

Hi FraserM

Hopefully your husband will be feeling a little better by now - I'm also a great fan of peppermint oil capsules, they make a big difference to me. My nurse also told me to hold my legs and rock on my bottom / lower back when feeling particularly uncomfortable and that definitely seems to help.