Friday, 10 July 2009

Sutent side effects - the full monty !

Since Sutent was approved for funding as a 1st line treatment earlier this year I have had many emails asking me about the side effects. So I thought it's about time I did a comprehensive list of the ones I have encountered - and how I have coped with them. This is just my personal experience of course over the past 18 months, the side effects differ from patient to patient, but I hope I can pass on a few useful tips.

I've been lucky (!) enough to suffer almost all of them but without exception I have found them all to be manageable in one way or another. The severity can differ from cycle to cycle and some disappear altogether after a while - for instance in the first few cycles I had a very sore mouth but now it's fine.

Right - here we go.....

First of all take your Sutent at night just before you go to bed - that way you sleep through the worst of the side effects.

Sore mouth/tongue - use children's toothpaste and an alcohol free mouth wash. Bland foods such as yoghurt, mashed potato, pasta etc.. are best when its really sore and nothing too hot or too cold. Luke warm is best. Use a straw to drink with if your lips are affected. As I said I suffered with a very sore mouth for the first couple of cycles but it hasn't bothered me since and I can eat or drink anything now.

Indigestion/bloated tummy - I take Pantoprazole (on prescription) for indigestion and to prevent gastric reflux. However I still suffered with awful indigestion at times and it was only when a friend suggested cutting caffeine from my diet that I really got it under control. It was a revelation and made such a difference. So now I drink de-caff coffee (it's not that bad really) and caffeine free coke (you get used to it) and don't eat much chocolate (that's the hard one!)
The best way I have found to cope with that horrid bloated feeling is to eat little and often, even if you don't feel hungry.

Elevated blood pressure - there's not much you can do about this. Make sure you have your BP checked regularly, at least once a week. Mine became raised within a couple of cycles so I take 10mg Amlodipine daily and it is now stable.

Decreased thyroid function - Make sure you have your TSH (thyroid function) checked whenever you have a blood test. Mine has been slightly elevated but no need for treatment as yet.

Changes to hair/skin colour - My hair is now white (or platinum blonde as I prefer to call it) ALL over my body. White eyebrows and eyelashes can be dealt with by using mascara and eyebrow pencil for us ladies - not sure whether the men would want to go this far though. I still have my hair coloured as you can get the odd darker hair, or even stripey hairs, sprouting through which looks most peculiar.
At the end of the cycle my skin develops a yellowish/grey tinge to it but that soon goes during the break. It's also become very sensitive and burns very easily in the sun so I now use a very high factor sunscreen - and fake tan !
My nails have also got a distinct yellow tinge to them - they look like they belong to a 60 a day smoker !
My eyes get quite puffy at the end of the cycle now - it looks like I've been out on the lash - but this soon clears up during the break.

Hand and foot syndrome - My hands have been quite bad a times, again this has varied from cycle to cycle, with cracked sore skin and pockets of pus down the sides of the nails. It can be really painful. Udder cream is definitely the best thing - buy it online in big tubs and smother your hands with it at least twice a day, they just soak it up. Its good for your feet too even if they aren't sore as it keeps the skin lovely and soft and supple. I always use gloves for washing up (if you can't get husband or kids to do it) and being a keen cook I wear disposable latex gloves for chopping/peeling etc..
When your feet are very tender it can be difficult finding suitable footwear - the only things I find really comfortable are flip flops in the summer and lovely soft fluffy Ugg boots in the winter.

Diarrhoea - This can be a right pain in the arse (if you'll excuse the expression!) - literally. The first sign and I take Loperamide - and keep taking it until it clears up. It can depend on what you eat of course - if you eat a curry you are asking for it. When it's been severe I've had a very sore bottom. I find that applying Sudacrem, it stings a bit at first, really helps it heal.
Don't be alarmed if your wee and poo change colour. My wee goes a bright lime green and my poo a nice pale orange. I'm pretty sure this is due to the colour of the capsules - I had one break in my hand once and despite a thorough washing it stained my hand orange.
I also suffer from excess 'wind' at times which causes much amusement in our house with the kids chasing after me with air freshener.

Tiredness/sheer bloody exhaustion - There is only one cure for this. Rest. Something I rarely do myself. But if I'm really exhausted a nap in the afternoon or simply just putting my feet up for an hour can really help.

Aches and pains in muscles and joints - I get cramp in the weirdest of places - in my fingers and along my shins. It can be really painful but doesn't last long fortunately.
Recently, in the past few weeks, Ive started getting pain in my joints and muscles. In my hips, my knees, shoulders and thighs. It can be pretty severe and debilitating and I find myself hobbling around like an old lady. Its early days but so far a cocktail of paracetamols and ibruprofen, 'piggy backing' them, take the edge off the pain (check with your GP before doing this of course).

Reading the above sounds awful but really it isn't. Life has carried on pretty much as normal for me. In the past 12 months I've travelled extensively and done things I never thought would be possible before I had cancer - let alone after.

The important thing is to remember it's Sutent that is keeping you alive and you can cope with the side effects as and when they occur. Remember to report them to your oncologist and discuss ways of dealing with them.

I'm off to London to speak at the NICE appeal on Monday - I can just imagine what some of the board members will be thinking when they see my face - "Oh no, its that bloody woman again!"


Ally Lifewithally said...

Good Luck for Monday I know you will do well ~ your useful tips will certainly help others on Sutent ~ Ally x

Andrew Petcher said...

Try not to Fart too loudly when giving your address!

Daria said...

You are amazing to be traveling and carrying on with life with such vim and vigor.

Andy said...

Good luck for Monday.

Deb said...

Good luck with the presentation on will be wonderful as always and don't mind the nay sayers..just look at all you have accomplished Jane for other cancer patients! Go girl!!!

I wanted to add one more relief for tiredness that one haves when taking Sutent. It was passed on to me by another RCC patient - Jane - and my husband has been trying it now for almost a month. He's had more energy during that time than ever before. Check with your doctor first of course before trying any type of medication. What is it? VITAMIN B12 tablets!!! They seem to work wonders.

kje said...

Hi Jane - wonderful information for other KC folks - thanks so much! I was surprised when you mentioned taking ibuprofen product(s) for your joint pain - that is the one medication my urology surgeon advised me to refrain from after my nephrectomy. He said it is processed by the kidney, whereas acetominophen (tylenol) products are processed by the liver. So with only 1 kidney left, he said the best thing I could do for it was refrain as much as possible from any meds that are hard on it. I'm sure you've had long discussions about your meds with your doctors, but just thought I'd mention this in case anyone else wasn't aware of choices and possible effects. Great hearing that you are getting lots of fabulous travel in! I'm doing a bunch of my own - this year so far been to Jamaica, Calgary AB and Pennsylvania USA. Next week heading to Vancouver on Canada's west coast and Seattle WA. 2 weeks later, hopefully to New York City and then perhaps Newfoundland in September. I find it so helpful to have an agenda each day to look forward to - helps the mental health tremendously! Take care.
Karen in Ottawa Canada

Sybil said...

Well today's the day for the London trip and speach... I am looking forward to reading you eport on it detail !!!..when you are able of course...
Prayers are going with you
Much Love Sybil xx

cruelladesurf said...

Still thinking of you Jane. Much love and many positive thoughts xxx

Joan said...

Hi Jane, I am taking Sutent also, have been on it almost a year. I read your side effects post, you said take it at night, and sleep through the worst of it. I have ended up taking it in the morning, because I seemed to have heartburn if I took it at night, I felt like my throat was on fire, one of the worst effects. I went back to the mornings.
My doctor wouldn't let me take ibupropen or any of those type drugs, I am surprised you can, I have to take a prescription pain meds.
How I look forward to those 14 days. JoJo (Joni)

Dale H said...

Hi Jane,

Your advice has been useful as I am coming up to my 3rd cycle of Sutent. I am yet to experience the nastier side effects as I am only on the 25mg dose although I have found the wind problem a bit inconvenient but the kids find it very funny. If there is anyone who has bad heartburn I have been prescribed by my doc Lansoprazole believe me it works wonders for me. I have my first follow-up scan 2nd or 3rd weeks of June so as you know these are a scary few weeks.
Best wishes and continue the fight Dale :-}

Anonymous said...

Hi, I would like to introduce myself. My name is Lana and I have Thymic Carcinoma. It is very rare and terminal. I have been fighting it for 6 years, 2 surgeries, chemo & radiation. In October 2010 my wonderful oncologist fought to get me Sutent 25mg. It was trial and error at first because I started out taking a higher dosage and could not tolerate it. I always said I want quality not quanity in life. Anyway as of last week the Sutent has kept the 10-15 existing tumors under control an no new ones have grown! As Jane said there are quite a few side effects but none that can't be dealt with.
Sutent is a wonderful drug as far as I am concerned. I was wondering if anyone has had an incident with bells palsy as a side effect. I was hospitalized last week with it and they say it could be a viral infection or cancer spread but haven't figured it out yet. They don't think it is a side effect of the Sutent but I was wondering if anyone else had experienced it. Feel free to email me at if anyone would like to comment or share more on this drug
Thank you.

Mark said...

Hey there. My dad was just diagnosed w Liver cancer, and put on the drug Sutent. So we are trying to do research to find out side effects. Thank you a ton for this site, and your experiences. I just printed out a blog you wrote about the side effects. Very helpful to our whole family!

Mark Bondi

jesslum said...

Thanks for the last bit, I hope you're doing well. Found your site from a google search on sutent side effects. I was on it for a month a few years ago and had pretty horrid side effects. Cancer was stable until now, and I have to go back on it. Absolutely dreading it, but heartened that you were able to carry on a pretty normal life in spite of the inconvenient side effects. Call me vain, but I'm secretly more terrified of the physical side effects -- my skin already has an orange-ish tinge, so I look like an oompa loompa on Sutent. And the hair, too. It finally grew out, but now I'll be seeing white again.

PhilinNewHampshire said...

I am just finishing my first cycle (day26). So far, I have had very mild side effects. Like the others I get a lot of gas and my skin has a yellow tinge. I have mild hand-foot and have been using bag balm and udder cream with good success. I also have had a slight rise in BP. But, it has been a pleasant surprise to not be worse. I don't expect to be this lucky every cycle but if it is working, I could live like this without complaining. I have Renal Cell cancer. My only tumors are in. Y lungs at this point. I went through IL-2 without success- it was brutal and triggered arthritis for me. Thanks everyone for your posts- the tips really help.

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