I’m going to a chemo chat group tomorrow, it says its 3hrs, what on earth are they going to talk about for that long? i will get to look around chemo unit, not looking forward to seeing people who are poorly. I start EC on the 13th, not cold capping, thankfully my husband is allowed to come, so just wanted a ask a few things, if that’s ok.
1: What do I wear to be comfortable
2: Has Polybalm helped your nails
3: Am I likely to be sick during infusion
4: How often do I need to take temperature at home
5: Have you gained/lost weight, is so how much
I’m getting a Little Lifts box and have a supply of headware, my chemo bag includes : lip balm, wet wipes, sanitiser, tissues, ginger sweets, ginger/mint tea bags, flask of ice cold juice, puzzle mag/book… anything else you recommend, or have I gone overboard.
Hello, everybody’s journey is a bit different. I had my treatment years ago, so symptom management is even better now. I had 6 x EC. So in response to your questions. Wear anything you are comfy in, they will need access to your arms, to site the infusion if you dont have any other line/access site. My veins in my hands held out. I didn’t do anything for my nails and didn’t have any problems with them. You wont be sick at all, and they will give you meds to ensure that. I did feel queezy for a day or so, but my Mum has the same chemo more recently with better anti sickness drugs and was totally fine. I didn’t take my temperature much, and I never felt unwell with a temperature. Your hospital may advise a protocol, but I did it now and again. I didn’t get any infections during that time. My weight remained unchanged. It’s good to take a book or magazine and a pal, you are there for a while. You will find each cycle can make you feel abit different, so don’t worry if you do. It is a tough time, but chemo really is a life saver and dont be afraid to ask your hospital staff or come on here for advice. Best wishes.
Hi, you could look into wearing cold mitts and socks as they reduce the risk of neuropathy. I cold capped mainly because I had read research that indicated it protected the hair follicles and reduced the risk of permanent alopecia. I never took my temperature unless I felt unwell and my weight remained stable as I ate as normal and walked most days. I hope chemotherapy is uneventful for you and passes quickly.
Hey @cruising sorry to hear of your diagnosis. I have had 2 EC, hopefully round 3 this week. Thought I would answer your questions they way you wrote them and dont worry about seeing sick people as everyone is upbeat and not everyone is bald or looks like a ‘chemo patient’.
I wear joggies or jeans and a short sleeved top with a cardigan or zipper top to wear over my shoulders.
Not used polybalm, so cant help here
I was sick with the first one but meds were changed and not been sick again, just feel a little sicky.
I take my temperature every morning, just my new habit. I have a bit of a head cold just now, so gives me comfort. I have a book that I write in daily - temperature, how I feel, food I have eaten and the time I take meds as I was prone to forgetting if I had/had not taken them. Lets me look back to see how I felt on the same day after the last EC.
I have lost a couple of pounds short of a stone. Partly due to not feeling like eating after EC and partly because I am making sure it doesnt go back on, Any weight I lose, has to be good on my heart when I get my operation…I am over 30BMI so any loss is a bonus.
I take my phone, kindle, sucky sweets, a cup with straw full of water/squash, a small snack like fruit and nuts (which never ends up getting eaten), sanitiser, face wipes, tissues. I find I dont end up using my phone or kindle as I sit and chat to the nurse or the person next to me. Hope this helps.
Hi
I had chemo from august to December last year, so all done and dusted.
Best advice I can give is to wear trackie bottoms, leggings , joggers etc. You will be hooked up to a drip, which if you need the toilet, goes with you. It is far easier when you don’t have a zip or buttons to cope with. You will be offered drinks and snacks. I also took lemon sherbets as EC can cause a strange metallic taste when it’s given. I doubt you will be sick as they dose you up with anti sickness meds before they give you chemo, but some people have a reaction. I took my iPad, ear phones, drink, tissues and wipes, phone , sweets, packet of crisps. The staff are great and keep a close eye on everybody.
I took my temperature twice each day which is what I was advised to do. I did have numerous temperature spikes and ended up at A&E about 5 times. I never felt ill like I had an infection but because it was raised I rang the helpline and was told to go straight to hospital. I did have neutropenia a few times. Get yourself an ear thermometer if you haven’t already got one, they are more accurate.
Hi @cruising , hope you got on ok at the chat group.
I had EC for 3 cycles then Docetaxel for 3 cycles. Just finished it all last month.
For EC I brought a book, ear pods, cold water and some sucky sweets. I found there wasn’t really any time when I needed the book etc as the nurse was giving the chemo from large syringes so was sitting with me the whole time. It depends how they do things in your unit. I was assessed the day before so when I came for chemo I was straight in with no real delays. The whole thing was done in an hour.
I wore joggers or leggings and a t-shirt with a zip up hoodie.
I was advised I didn’t need to check my temp unless I felt unwell.
I wasn’t sick at all. The meds really worked. Just take all they give you and if you are feeling sick, let them know as they can try different meds. I also used travel sickness wristbands. No idea if they helped but they won’t do any harm.
During chemo my weight increased by a couple of kg overall. At times I lost a few pounds when my appetite and taste were poor but I put them back on again with lack of activity and too much bread!
Some of my nails now have ridges, some just have lines and they’re all a bit discoloured. I just used neutrogena hand cream regularly and painted on a clear strengthener. I only noticed the ridges and lines after a few cycles. It’s like one line per cycle as they grow out.
Will you be getting Docetaxel? I have different tips for it so just ask if you need to.
All the best for your treatment x
Don’t worry at all about seeing poorly people at the chemo ward. Most people don’t look poorly at all - it’s hard to believe that some of them are even having chemotherapy.
About clothes, I didn’t want to look like a patient (it’s just my quirk). I either dressed like I do to go running or wore normal clothes. You can wear what you want. But having loose sleeves helps if you’re getting infusions in your arm.
I only had 4 rounds, so no problem with nails.
I wasn’t sick, but I had a horrible taste and anything I smelled at the time of the infusion made me feel queasy when I smelled it again. So, don’t use your favourite soap that day, don’t wear a perfume you’re particularly attached to, and take something strongly flavoured (sweets or ginger if you don’t like sweets) to offset the taste.
I wasn’t told to take my temperature regularly, but to watch out for a fever. Good job I was vigilant, though, because I got neutropenic sepsis. It was fine after a stay in hospital and antibiotics. Ask them how often you should do it and what to look out for.
I didn’t gain any weight, despite being told I definitely would. I don’t eat refined sugar, I don’t really like deserts, I gave up alcohol, and I like to have low GI food because it gives you more consistent energy during the day. But I’ve always been on the skinny side. Everyone is different.
It’s nice if you can have somebody with you. Our ward stopped that during Covid and hasn’t restarted it.
Good luck, and don’t worry. It’s nothing like it is when it’s portrayed in the media or on TV. You’ll be surprised by how normal everything and everyone seems. xx
@pod123 the chat was interesting, I knew quite a lot already from on here, it was hammered home to phone hotline if worried about anything, we didn’t get to look around chemo unit as the meeting was in a church hall, so wondering if this will happen when I get bloods next Tuesday. At first my oncologist said it would be Docetaxel, I said I was concerned about studies saying it has a higher risk of permanent alopicia ), so she switched to Pac. She said she’d never come across anyone with permanent hair loss but look up the titless wonder, that’s where I found out and clearly it is a thing.
That’s interesting. I wasn’t given a different option. I was just told they recommended EC-D. I lost my hair 2 weeks after the first EC but it started growing back whilst I was on Docetaxel so I don’t think permanent alopecia will be an issue. Hopefully not anyway! I didn’t have a chance to look round my chemo unit before I started and I had my first bloods done at my GP surgery. I wasn’t really bothered as I’ve worked in a different oncology setting so I already had an idea what it would be like. As someone else said, chemo really wasn’t like in the movies. People generally looked very well. Some had hats, some wigs, some none, There was no vomiting the instant the chemo started! In fact I had no vomiting at all, except once on Boxing day, probably due to over indulgence on Christmas day, as much as due to the chemo
