How to manage first week after chemo?

Dear @Mich_AH,

from jennyss in Western NSW

And does anyone know if it matters which protein water I drink?

Thanks so much everyone. I spoke to my oncologist who believes I had grade 3 mucositis. She is going to reduce the dose of the most reactogenic chemo drug and also look at giving me a bag of saline when similar effects start to kick in for this next cycle. Other than that, I will use your tips to help keep my nutrition and calories up as best I can and eat well as my body recovers each time. Roll mops used to be a favourite snack of mine so I'll be sure to add those to the list for when I can eat! 

Someone else recommended I look at supplements that are given to patients who have had gastic banding, as they are designed for people who will certainly not get enough nutrients from their limited diet while they recover. Has anyone else tried this/heard of this? 

I had a dreadful time with the AC part of my chemo and spent a total of 56 days in hospital split up over the four doses. I ended up losing 11 kilos and was seen by the hospital dietitian who worked on the oncology ward. I was given little boxes of high kilojoule drinks (I forget the name now, but I'm sure someone, maybe arpie, will know). They can be purchased at the pharmacy, but are expensive. I was also given a tin of Sustagen hospital formula to take home with a recipe book. She said to me "If you see a kilojoule, catch it and eat it". and also said that as opposed to what she advised other patients, not to drink too much plain water. She explained that it was 'empty' energy wise, and advised that I drink fruit juice, tea, herbal tea and so on either with added sugar or honey. She also recommended that I eat fish remembering the acronym S,M,A,S.H. Salmon, mackerel, anchovies, sardines and herring. These small fish are packed with small crumbly bones (not sharp pokey ones) and are an invaluable source of calcium and protein. I loaded up on rollmops and they were delicious as the sharp vinegar they are marinaded in, cut through the wet carpet taste in my mouth. I agree with the others about a list for your doctors...they might be able to tweak your drug cocktail. Good luck with your ongoing treatment.

Excellent tips given here. I am sorry you are feeling this @Mich_AH - definitely write down everything you are experiencing. I think it would be a really good idea to make contact with your team before your next round so they can start making preparations for you. They really want to keep you as well as possible and they will be able to prescribe medications that can hopefully help you. As @Irb_03 has said, significant weight loss can affect the dose, so best to give them a call now and let them know as you don’t want any hold ups at the next appointment. Take care 🌸

@Mich_AH I would make a note of everything that has happend so far, and until you see the oncologist before your next chemo. Have a good discussion around symptom management and what they can do to prevent it happening again. They may need to tweak meds a bit. If it does happen again, ring your treatment centre or brest care nurse for advice. 3kg weight loss is significant and tgey don't want that happening as it can affect dosing. Having said that,  I  didn't take my own advice when I had chemo. I  lost 12 or 13 kg over 6 cycles 😀

Sorry to see you here but welcome to the club that no-one really wants to join!  xx. Ask away any questions & we'll do our best to help you get thru this. xx

Do you have a Breast Care Nurse assigned to you?  They may have some tips too?  Or contact your Oncologist and see if you can go back onto the steroids, even at a lower dose - specially after your next lot of chemo?

SO sorry to hear you are doing it tough with the chemo side effects .... definitely take as much water as you can .... and if you are able to drink - maybe make up some eggflips/smoothies to sip on as well?  You can load them up with cream, custard & even icecream to make them more appetising ..... They will have more protein/carbs to hopefully stem your weight loss. 

Hubby is on permanent chemo & he just grazes most of the day - small amounts, often.  
What ever you think you can get past your mouth - just try it - probably nothing too dry tho (like biscuits ....)  In hubby's early days, I even mushed all his food up as well .... even roast lamb with gravy - LOTS of gravy, so he could just suck it down, instead of chewing it.  He still got the 'flavour'!

Jump onto this thread for some links on the blog that you might like to check out ....
https://onlinenetwork.bcna.org.au/discussion/23961/welcome-new-members#latest

I am sure others will jump on soon with more tips xx. take care