Side effects on EOX chemo.

[Retd]

I started palliative EOX chemo last Thursday (eventually! They had sent my drugs to the wrong satellite clinic!).

I would like to ask a few questions about side effects which some of you may be able to help me with. I am certainly having some of the expected side effects - such as pins and needles when touching anything cold, but I'm also having some unexpected side effects and I don't know if they are normal or not!

One of the most disturbing, is one affecting my taste buds. If I put something fairly strong-tasting in my mouth I immediately get a very painful reaction at the rear of both sides of my jaw and beneath my ears. It only lasts for a couple of seconds but is indeed very painful - a sort of stinging stabbing pain. Anyone else experienced this? It even happened with toothpaste yesterday. Very peculiar and not very pleasant. It happens the moment my taste buds 'recognise' the taste and then the reaction starts.

I also have some numbness in the outer part of my right shin. Noticed it when sponging my legs in the bath yesterday. Is this normal?

Finally, although the initial nausea after the first day's infusions is gradually subsiding, the Capacitabine tablets are making me very light-headed and a bit 'spaced out'. Again, I have no idea if this is to be expected - or if I shouldn't be feeling like this at all.

The back of my left hand, where the canula was inserted for the infusions, still feels very sore and bruised. I hope this improves before I have to have another of the things stuck in there!

Anyway, any comments and advice would be gratefully received.

Regards

Kev

[Hidden]

Dear Kev

I have never had this medication myself, but I do know that people vary enormously in the reactions they have to chemotherapy. I have heard other people talking about their taste buds being affected, and something that might well affect the brain temporarily (chemobrain?) which might, or might not, be what you describe.

I think the medical staff will be interested in your reactions to it so do mention it to get their advice.

They are strong drugs so some effects might just be inevitable?

Good luck with it all.

Alan

[fredsonic]

Give the Chemo ward a ring. I am sure they will have given you a number for this sort of thing. Don't be fobbed off if you think things are out of the ordinary. They will put you on to a Doctor to put your mind at ease. I was fobbed off by a nurse with Angina that could have killed me. Later in the week I got to speak to a Registrar who stopped the tablets there & then.

[Retd]

Thanks Alan and Fred for your comments. I agree that it's a difficult area because everyone seems to react so differently to chemo. Some people seem to be able to carry on full-time working on chemo - although I'm retired I simply could not do that. I feel quite weak and shaky all the time now. I am managing to get out for short walks (weather permitting), but that's about my limit at the momment. Although I receive my chemo at a 'satellite clinic', the drugs are made up at Clatterbridge Oncology hospital on The Wirral. I have a 'Chemo Alert' card and have to phone Clatterbridge in the event of emergencies such as high temperature, and also simply for advice. Since Thursday I have phoned them twice - once for advice, and secondly in relation to this stinging pain at the back of my jaw. To be honest I was not impressed. The chemo triage nurse is on a bleep. In the first instance I was held on the phone for almost 15 minutes before she came to the phone. In the second instance they told me they couldn't locate her and she would call me back. She did - 30 minutes later! She had never heard of the 'taste bud' reaction and said she would get a chemo nurse to contact me. That took another 20 minutes. That nurse also had not heard of this reaction but simply said to 'see how it goes' and if I find it intolerable to get back on to them!

It's not bothering me unduly. It is painful and unpleasant - but the reaction does not last for long, I was just interested to see if anyone else had experienced a similar thing.

Thanks again for your help.

Kev

[Hidden in reply to Retd]

Dear Kev

Here is an extract from one of our information sheets on Taste Nutrition and Diet. It is also aimed at post surgical patients. Sorry for the formatting coming out wrong. It can be a good idea to check with your dentist because the process can make things worse.

All best wishes

Alan

Taste:

· One of the five senses, partners with the less direct sense of smell. There are four types of taste -sweet, bitter, sour and salt; and the recent addition of fifth - “umami” = savouriness

· Smell, texture and temperature are all important to taste. Flavour is also influenced by taste, touch, sight, pain and smell

Factors affecting taste:

· Taste cells are present on the tongue, upper palate, throat and oesophagus. Stomach receptors send messages to the brain about taste via the vagus nerve

· Chemotherapy, certain medications, hormones, upper gastrointestinal surgery and zinc deficiency can influence taste perception. Chemotherapy can damage the oral cavity leading to mucositis (inflammation of the lining) with ulcers and sores, infections, and salivary gland dysfunction. Cisplatin a chemotherapy drug frequently used to treat upper gastrointestinal cancers is known to affect taste.

· Zinc partly responsible for repair and production of taste buds. Approx 50% of drug-related taste disorders are caused by zinc deficiency as many medication bind to zinc preventing it from functioning properly

· Radiotherapy also affects the salivary glands. Saliva interacts and protects the taste receptors in the mouth.

· Tips for combating dry mouth: regular oral hygiene, mouthwashes, mints, sour sweets, sugar free gum, artificial saliva, crystallised ginger

Managing altered taste:

· Try new foods and cuisines e.g. Thai, Chinese, Mexican

· Flavour foods with herbs and spices e.g. fresh mint, basil, parsley, ginger, cinnamon. Add lemon juice to food as a marinade or dressing, try adding a few drops or a slice to your water.

· Refreshing drinks e.g. lemonade, ginger beer, herbal teas

· Cold foods with blander flavour and less smell can appeal especially to those suffering from nausea, taste aversions, sore mouths poor appetites e.g. potato salad, cold cuts, quiche

· Avoid metallic cutlery if you are suffering from metallic taste.

· Take plenty of fresh air and ensure your room is well ventilated.

· Distraction techniques (eg taking occasional bites whilst watching TV) and trying finger foods e.g. crisps/tortillas and dips, nuts, cocktail sausages

· Small plates with colourful presentation

· Do not worry about eating a “meal” initially, if you want to have biscuits for breakfast, jam doughnuts for lunch and cereal and toast for dinner it’s a start!

· Regular mouth hygiene is important

[Retd]

Many thanks for that Alan - all good advice! Having done a bit more research on my strange reaction - and spoken to my Macmillan nurse, it seems definitely to be my salivary glands that are causing the problem. The chemo drugs simply seem to be causing them to over-react when I put food in my mouth. It doesn't happen every time - and the pain is less now than the first time it happened. I'm just hoping that it doesn't worsen after my next infusion!

Thanks again.

Kev

[Westoncromwell]

Apologies for late reply. I am on my second set of ecx cycles. 3 pre op, 3 post op. They are 3 x 3 weeks, so 6 in total and I am about to do no.6.

I have found that, generally, week 1 of each cycle to be very debilitating. For the rest of the time general fatigue and some nausea also during the first week.

My eating habits didn't change that much, ate lots of chocolate ! (which after the op, if you eat too much you can get dumping)

I have had to have white cell boosters and fallen foul to Flebitis and another infection in my pre op chemo round.

Hope this helps

Best wishes

Brian

[Retd]

Thanks for that Brian. Since my original post on this thread my side-effects have gradually diminished. I only suffered nausea for the first 3-4 days after infusion - after that (whilst still on daily capacitabine tablets) I have not had to take anti-emetics at all. Still not much of an appetite - but managing to eat a reasonable amount. My second infusion is due next Thursday - and I'm not looking forward to it, or the few days after it! The vein in the back of my left hand is still sore and so I'm not relishing having another canula stuck into it.I've no doubt that they could switch to my right hand - but then I don't want problems with veins in both arms. The only side-effect that is still causing me some concern is numbness in my right shin and top of my right foot. There is a definite loss of sensation if I touch the top of that foot - and it gives me a slight limp when walking. The pins and needles in my fingers that I experienced during the first 7 - 10 days after infusion, when touching anything cold, has now gone completely - for now! I also suffer a lot of wind which, when it becomes 'trapped' is quite painful. I've tried over-the-counter remedies such as 'Wind Settlers' but they don't seem to have any effect at all. May ask my gp if there is anything stronger he can prescribe.

Thanks again for your interest Brian.

Kev

[Hidden]

forum.sosg.info/showthread....

Suggestions that some people find helpful (but it can be trail and error) are creon and liquid immodium - something at least to suggest to your doctor, and the clinic should know what to do as it seems like a side effect of the chemo drug they are familiar with.

The link is to 'The Wind' on Food Tube Forum forum.sosg.info

Hope this helps

Alan

[Retd]

Thanks for that Alan.

Kev

[JMak]

Hi Kev,

All the side effects you mention are normal - my Husband had his first EOX chemo a week ago, as you a palliative measure. He gets a metal taste in his mouth - and very cold drinks almost lock his jaw. He was warned this may happen. The tingling in his fingers, toes , nose, ear tips is very uncomfortable, he has to wear a hat, scarf all acroos his face and gloves. The day after his chemo ate breakfast with his gloves on.

Where he had the cannula remains tender & sore, if he falls asleep laying on the arm the pain is very unpleasant. I would focus more on the danger of infection etc. Hope this helps