Stage 3 bowel cancer about to start chemo - worries

Hi NewbieVixand a warm welcome to the board from me. As I’m sure you’re aware, chemo has lots of side effects and everyone reacts differently so there’s no guarantees as to which you may encounter - the good news is that there are lots of pills and potions available and the nurses will check how you’re doing on a regular basis. 

Its worth keeping a diary as a bit of a reminder and also you may find that a bit of a routine appears eg. you might find that you feel a bit tough the day after your iv but then pick up again so the next time you can look back and think ‘yeah I feel a bit rough today so I’ll take it easy knowing I’ll feel better tomorrow’

I was lucky enough not to suffer with any real sickness issues but the nurses will give you tablets to take home and if you still struggle there are other ones available that might suit you better.

My main side effects were the cold, first bite and sore feet

Cold - you may find that anything cold including the weather has a strange effect on you. The cold weather can make your face twitch so wrap up warm with a scarf to cover your face after chemo and have gloves on. It’s also a good idea to keep some gloves near the fridge as touching anything below room temperature can feel like picking up an iceberg. Cold drinks are a no no so I used to add a splash of hot water to whatever I was taking my tablets with.

First bite - for the first couple of days after iv I found I got a pain in my jaw when taking a bite of something. It’s not a bad pain - makes you jump a bit - and wears off quickly so try and take a small bite to start with. 

Sore feet/hands - Keep well moisturised. The nurses may give you cream but if not they recommend aveeno with Shea butter (supermarket/Superdrug etc.) or udder cream (!) which you can get on amazon. Keep a close eye on your feet and hands and mention any problems to the nurses as the side effects can be long term and maybe avoided by lowering your doseage.

Sore arm - the iv can cause soreness in your arm.. The nurses may use a heat pack during the iv if you have a problem and I used a heat bag at home as my arm became very sensitive.

Hope this doesn’t all sound too scary - it’s worth knowing what to expect and plan for and also what’s ‘normal’. You will be given a 24 hour phone number and I was told that it was for help and reassurance not just emergencies. I continued working part-time in an office throughout my chemo - not everyone wants to do that but just wanted to show you that chemo is doable.

Good luck with it and please let us know how you get on or ask anything else you want to know - I was stage 3 and I’m just coming up to my 4 year clear anniversary.

Take care

Karen x

Hi Newbie we are very close in treatment as I have just started my 2nd session of Chemo. Karen has given you some detailed advice which I agree with. Like her I had no sickness and occasional nausea also suffered from First Bite which soon passed, this has reoccured at start of my current session. My main concern was a very acidic stomach which I am controlling with a couple of Gaviscon daily plus making sure I have food in my stomach when I take my tablets. Just to confirm I am on the the same treatment plan as yourself. I have had off colour days but nothing dramatic, you will learn from every experience. Hope your introduction to Chemo is as good.   BANGLA

Hi Newbievix,

Just a note on the side effects, i am taking the tablets, 5 in the morning and six at night after food on 14 day cycle.

I think its important to eat well because its my thought it helps disperse the chemicals in the stomach preventing sickness, just my thoughts though as i have been lucky not to suffer sickness, my side effects below coming to the end of round two as follows,

Dry skin around the nose and top lip, ( aveeno  moisturising cream helps with this but its my guess that lots of other moisturising cream will also work.

Burning and tingling of end of nose and top lip, suggest wash regular with cold water and cream 

Chemicals seem to leach through my skin and mouth, best remedy to wash hands and face with cold water on a regular basis otherwise the smell can make you feel sick, also if you ware contact lenses like me you don't want to transfer any residue to your eyes.

Burning sensation to the head, bit like sunburn but not too bad so no remedy i'm afraid.

Sore and burning feet, started all of a sudden in second week of round two, applied cream sent by hospital ( Pliazon Plus ) 4 times a day, helps a bit but found that soaking feet in tepid or cold water gives the best relief and try to keep feet cool 

At this time i have found the sore feet to be the worst side effect so take care of them as soon as you feel the slightest changes

Also started to have a little heart burn which i'm going to mention to nurse next week, been taking indigestion tabs for relief but haven't consulted nurse or doctor yet so probably will asap

Sorry i can't comment on the Oxaliplatin side effects.

Hope all goes well,

TG

Hi Newbie, 

I had the same chemotherapy as you for 4 sessions this year. Karen has covered all the possible side effects very well. The peripheral neuropathy is a bit strange to start with but I found it wore off after the first few days after the IV dose. Main thing is not to have any cold drinks at first it can be a bit unpleasant, I took a warm drink home from the chemo unit with me and just sipped it slowly in the car on the way home and wrap up well. 

I also got indigestion and hiccups with the meds and was prescribed omeprazole which helped a lot. I also took gaviscon as needed. I also had a lot of tic tacs or pastilles as I got a metallic taste in my mouth all the time. 

I would also add just to do as much or as little as your body tells you. If you need to rest in bed for some or all of the day do that and you will have more energy the next day. The steroids help the first few days after the IV Oxaliplatin.

1. I was lucky enough not to get any problems with sore hands or feet, just a bit dry so rich creams are a good idea. 

Everyone's experience is different and the nurses will look after you very well I am sure, and just let them know if you have any problems. You will be given a 24 contact number most likely so you can ring with any worries. 

Best wishes with your treatment, 

Thank you for all the respnoses

so I had my treatment on Thursday 03/12  and currently have quite a few side effects

Tingling in toes and hands, nausea, first bite and tingling in arm where infusion went in. Hoping that goes before next infusion due on 30th Dec 

take care all

vix x

Hi Vix, 

Sorry to hear you are having those side effects. Are you on ondansetran for the nausea I found that helped. Be careful re cold food and drinks, and anything tart, to avoid first bite. Definitely no ice-cream, not that it is the weather for it anyway. If your arm is sore you can use a small warm pack, just make sure it isn't too hot. I almost burnt my arm after my first session. I had a picc line in after that which made it a lot less painful. I just had to go to the hospital every week to get it flushed out. Make sure you let your chemo nurses know how you are feeling. You have probably been advised it before but try and have smaller frequent meals, rather than 3 a day. I wish you luck and hope it gets easier for you. How many sessions do you need?

By the way you are not a wuss at all. You are doing really well . It is tough going at the moment, but you can get through it. 

My husband has just been diagnosed stage 3 rectal cacner and is starting his treatment in the new year. Would be interested to go through this unknown time with with you.  

Hi Lynn100and a warm welcome to the board from me. I’m sure NewbieVixwill be happy to go through this journey with you - I went through my treatment with 2 other ladies on the Bowel Cancer UK Board and I’m still in contact with them now 4 years later - their support was so important and still is. Please stay away from google - you can ask anything you want on here and read people’s profiles by clicking on their names. There will be some tough times ahead but Bowel Cancer is very treatable and everyone on the board will be happy to support you. Is your hubby having chemoradiotherapy first or going straight to surgery? x

Hi, thank you for the kind words and support.  He is having radiotherapy and chemo tablets at the same time for 5.5 weeks, so I think its going to be quite tough for him.