Any advice for EOX chemotherapy?

Hi

It’s good to hear that you mum has recovered well from the operation.  Did she have chemo before surgery?

You can read my blog on my experience of chemo before surgery.  I had ECX which is very similar- only one drug is different. Others have had chemo after surgery and have posted about their experiences. It is harder after surgery so helping your mum through it will be so important.

My family and friends helped me get through the bad days! Little things like making food I could eat as the nausea was bad for the first week but it did pass and the second and third weeks were easier.  I tried to walk a little every day which was an effort but did help.

If you think I can help I am happy to answer any questions you have!

Wishing you and your mum the best of luck!

xx

Hi Jac, 

No she didn't have chemo before surgery, not sure why as a lot of the information I've read mentions having it before surgery. How can I find your blog as I'd really like to read it? I've starting writing a list from previous posts of things I need to get - baby ear thermometer, children's tooth brush and tooth paste, good mouth wash to dilute and use often. Can you suggest anything else? 

Cheers, C. 

Hi

I have posted a link to my blog below and sent you a friend request.  I think you can find the blog by clicking on my name. 

https://community.macmillan.org.uk/members/jacquiw10/blogs

The ear thermometer is good to have as you need to watch you don’t get a high temperature   I bought a tangle tease hair brush as my hair did thin and I used a gentle shampoo twice a week. I also bought some hats from a website called Suburban Turban! My own hair dresser organised a lovely wig for me but as my hair only thinned I didn’t need it.  My daughters really helped me with this and bought me lovely make up!

I used to have a bath in the morning as it helped me relax and deal with the nausea. So lovely relaxing bath oil was good! 

Eating little and often and drinking as much water as possible helped. I did try ginger and lemon tea which I quite liked.

I did use Difflam mouthwash when my mouth was sore but that only happened once or twice.

Do post any questions here as there are lovely people who are really supportive and will help you and your mum. 

Xx

Hi

Its great to hear your mum is recovering from her op, it sounds like she has been through the mill recently. I’m sure her team will do a good job at helping her through chemo but here is a few things that have helped me (I’ve just started post surgery chemo on Tuesday, a different regime FLOT at the moment nausea is the most awful part but after 5 days I’m starting to see the light) 

Hot water bottle - I found I get aches and pains all over and headaches so the warmth of the bottle really helps 

bed wedge - not everyone likes them but I feel better sleeping propped up, I put it under my mattress and also have lots of comfortable pillows, I basically flank myself in pillows to support me and stop me from moving about too much. I got the bed wedge via an offer through the oesophageal Patients Association site, if you want a link let me know. 

Biscuits - rich tea and ginger nut, help a little for nausea just getting a few calories in, I haven’t really eaten much the past few days. Just having something handy to nibble on is good

olbas oil - I find my sinuses get affected so I have some handy, I also think it’s quite calming

hand cream/moisturiser/lip balm - everything seems to dry up with chemo

a hospital bag ready - nightclothes, etc, toiletries, book, snacks, eye mask, earplugs, baby wipes  hopefully it’ not something you need, but after temperature spikes I attended hospital with each cycle and was admitted once, it’s just helpful to have something ready to go rather than rushing around  

A fan - I sometimes get hot flushes so a fan comes in really useful, I have a big one next to my bed but haven’t needed it yet, I also have a hand one and also a battery operated hand one, the battery one I use quite a bit, it can even help with nausea  just the cool air gives me something else to focus on

We bought lots of hand sanitisers and make sure when someone enters the house they wash their hands thoroughly, your mums immune system will be weak if not wiped out so if anyone has a mild illness keep them away, avoid crowds too we became totally germ paranoid but I didn’t catch anything during chemo so it was worth it, my husband even used disposable gloves and we used face masks when the kids had colds, I was the only person in the house not to get sick! 

There are days when I just want to be left alone, so we got a TV in the bedroom with Netflix and DVDs and I have books and puzzles for if I get bored  sometimes my concentration just isn’t there but it’s nice to have tv or radio on in background  

i also keep a note on my phone, but anywhere is fine of my daily symptoms so I can tell my oncologist, I also make bites of which tablets I’ve taken and when so I don’t miss anything it helps with sickness meds to take them before they’re needed so keep on top of them  , also with sickness meds if it’s not working speak up, there are different ones to try, I will certainly be discussing mine at my next appointment  

I know everyone is very different and some people sail through chemo, hopefully your mum will get through it unscathed. My mother in law had it after bowel cancer and she even managed to go on nights out with her chemo bag attached!  If your mum is able to get out for a little walk then that is brilliant  

Hope some of that is helpful, it’s hard to prepare for everything but it’s lovely that your mum has you on hand to help, after all those we love are the ones that get us through it more than anything. 

Best wishes  xx

You are right every one is different. I had 5 cycles if EOX. I had 2 problems one is nausea and vomiting but the main challenge was reduced white cell count. This caused delays to treatment and they had reduced my dose twice down to 70% of the original dose. I hope your mum would have s better experience. Deya 

Thanks everyone for all your advice. Mum had another CT scan before the chemo started and cancer spotting was seen on her pelvis and spine. There will be no change in her chemo and we've just got to hope these spots can be controlled. 

One of the main symptoms Mum's getting is tingling in her hands and feet especially when she touches cold things. We've got some gloves for her to wear. Any other suggestions?

Her mood is also terribably low. I'm trying to keep her up but we're only on cycle 1! How am I meant to keep her going for another 7 cycles?!? 

C

Sorry to hear about the spotting, hopefully the chemo will soon clear that up. 

With regards to the tingling it’s called neuropathy and very common , you need to tell her team that she is experiencing this because they may need to adjust her dose to avoid permanent damage. It can get worse with each cycle which it did for me but thankfully cleared up after chemo finished (although I’ve got it again slightly in post op chemo) 

I remember my first cycle being a huge shock to my system, the reality and enormity of everything hit me, it was a very low point, my mood lifted towards the 3rd chemo as I just seemed to tolerate it better. I did consider counselling but in the end decided I was doing ok, maybe suggest it to your mum or speak to Macmillan about what you can do for her. My advice is just being there with lots of reassurance but also not make everything about cancer, I got really sick of it being the topic of conversation amongst everyone, i felt like I became a patient overnight, not mother, wife, daughter, organiser, worker, I lost my identity and it’s quite isolating. 

Hope the next cycle goes better for you all xx