Debbie, hope you start to pick up soon. I do admire those of you with young children to take care of aswell, even with help and support I can imagine how difficult it is. This is definately the place to have a good rant or moan, so never feel you should apologise for it.
Nathalie, glad you’ve found us and I hope everything went well with telling your children. Let us know how it went.
Sissy, hope you start to feel better soon too. I wonder if maybe what kept us going after the first dose of FEC was the relief that we’d survived it, and now it just seems a real long haul. I’m starting to get a little nervous for my second dose on Monday, it’s a strange feeling knowing what’s coming! My hair is shedding slowly and steadily and like you, my scalp is sore so I’m wearing a sleep cap at night which feels very strange, but more comfortable than not wearing it. I’m thinking I wont bother once its all fallen out!
Mechele - was it today you had your second dose, or is it in the morning? Hope it all goes/went well - fingers crossed for you, hopefully you will feel better this time!
Got bloods tomorrow at 8:30am - that will be a shock to the system having to get up that early! Then I’m dropping into school at lunchtime for a social visit - just to the staffroom tho, not risking mixing with the children so close to chemo day! How have you found working Claire?
And hope everyone else is feeling OK at which ever stage you are on now :)
Hi Natalie, sorry you have had to join us but welcome to this very supportive forum. I had first EC 13th Jan, 2nd treatment yesterday. I am moving to weekly paclitaxil after 3 cycles of ec so no cold cap. Hair started to come out on day 9 I had it shaved on day 13 as it was such a mess. Gone nearly now but once I got my head around it am finding it easier tho discoverd you definitely have to be aware of the weather before choosing wig/ hat or scarf ?.
I have two girls aged 18 and 14, I was definitely more concerned about their reaction telling them I had breast cancer and had to have op ( lumpectomy and sentinel node biop) the reality was vey calm though I made sure to explain this cancer has much better survival rates as they can take it out etc. Did such a good job they been great and just accepted it all. At first I was expected to only have radiotherapy and the girls seemed more concerned if I would loose my hair! So when there were traces in the node and chemo was prescribed again I was worried about telling them the plan had changed ! Again they accepted it and quite happily share my rabid dog, prison and now fortune teller jokes. You will be surprised how resilient they are, we lost my husbands mum and my aunt to lung cancer in the last couple of years so their C experience has until now been quite bleak. I found open & honest with a fair bit of humour has worked for us. Good luck, hope you are not feeling too ill. Sending love Jo X
Had my first outing with the wig today! Walked down to the Dr surgery for bloods and later went into school at lunchtime to see everyone. Was really nice to catch up and get over my wig anxiety! Was a little hot in it mind, so I imagine it will be worse in the summer, but I felt normal and that’s what I wanted As soon as I got home the headcarf went on for comfort mind!
I’m in at 1:30 Monday Claire, so you’ll probably coming to an end as I start, assuming it takes longer cold capping. Its probably worth continuing with now you’ve started, it might just be a patch that you can cover up hopefully.
Strangely my 3rd FEC which was due on 29 Feb, is going to be on 1 March instead because they said the Pharmacy wont be open!! The GP I saw this morning who did my bloods said it was rubbish! He’s a junior Dr training to be an A&E doctor, so he works there as well (really good at taking blood - don’t feel a thing!) He said that if someone comes in with a heart attack they’re hardly not going to treat them because the pharmacy is closed!! Which is what I thought, so I’ve no idea why it should affect my chemo! Are you the same Claire - your 3rd should fll on the 29th too?
Glad all went well Mechelle. Lots of rest for you this weekend.
Claire and Kim sounds like you’ve had a nice time in at work. I do find my wig hot too, I take it off as soon as I come home. Not sure what I’m going to do in the summer, maybe a straw hat!! Does anyone know when our hair should start growing back???
I’m now day 8 and still feeling rubbish. I went to oncology unit today to get checked over as I’ve got awful tingling in fingers and sometimes my toes and ache in arm, feeling very light headed too. Everything was fine, told tingling prob vein damage, which is great after 2nd chemo!! I haven’t taken an anti sickness since yesterday afternoon as I think the Cyclizine was giving me other side effects. Nurse told me to try and not have any anti sickness today as should be feeling better now, but I’m feeling sick again and also heartburn, so think I’ll be taking a tablet soon. Thankfully husband came home last night, so he has watched the kids this afternoon as I’ve been in bed since 11am!!! Fed up now, this is the hardest thing I’ve ever done, just wondering how I’m going to do it 4 more times!
Debbie x
Debbie, I’m having the same thoughts as you at the moment, can’t believe I’ve got to do this another four times, family keep saying how it’ll fly by and I can do it, however it’s easy to say when you’re not the one being pumped with chemicals!
Day 5 now, took my last steroids and anti sickness yesterday, haven’t taken any today and haven’t felt too nauseous, I got my husband to make me a baked cheesecake yesterday so I’ve been eating bits of it. Is everyone else craving bad carby foods? I dread to think what I’ll weigh at the end of all of this.
I’ve defo found this cycle harder than the first, have been more tired and spent more of the day time laying in bed, though I’ve also had trouble sleeping at night, the last two nights I’ve been awake until gone 3am. First injection tonight, husband is going to do them this time. I’m quite nervous about them as they made me feel quite rubbish last time. And my wig, I’m very envious of you ladies who have been out wearing yours, I’m still to scared to go out in mine! Sissy xx
Aww Debbie sorry you are having a Rubbish time. You will get through this, make the most of hubby being home and enjoy the rest you probably don’t normally get ?.
I agree the cotton type scarves and summer hats will be a must for the summer. I saw a link on Facebook for bamboo/nylon headwear that said they control temp. Link was “Living with cancer” ?
We are all a little step forward this month and are strong women, we will get through this and the hair will grow back love and hugs to all Jo xx
Debbie I do hope you’re feeling a bit better now X
Mechele - how did the second Chemo go? Better Than last time I hope. X
I do hope everyone else’s 2nd cycle goes well, it’s definitely worse when you know what’s coming I think! Let’s try & enjoy the weekend (I might be shaving my shedding head) love to all xxx
Hi Elizabeth - welcome to our group! My cancer was also found during routine mammogram. I actually cancelled mine twice as I had a school trip to a Food Festival and the next one, I was on a 2 day mental health course. But I’m confident that nothing grew significantly in the 3 week delay.
Having my grey roots growing through and not being able to dry and straighten my hair was one of the reasons I decided against cold capping plus I can’t bear to be cold! My natural hair is pretty rubbish, so I’m hoping for thick straight dark hair when it grows back!!! Unlikely I know!
Spending the afternoon rearranging my clothes drawers to reflect what I’m actually able to wear these days - the under wired bras are out!! After that I’m rearranging the things in my bedroom so I have things I need during my week of chemo fog to hand, but also so it looks like a bedroom not a hospital bay!!
Have my wig on a polystyrene head on my chest of drawers - might have to rethink that …
Well, back to it!
Xxx
Ellie, on this round I’ve been having the injections a lot later as my husband has been doing them for me rather than the district nurse. I usually have them at around 10.30pm, then check my temp and take a couple of paracetamols. I don’t think they make me feel that well, I ache a bit and just feel like I’m not really with it! I’m dreading the last one on Tuesday as like you I had an awful night with the 5th injection last time. I’m looking forward to Thursday when I will hopefully feel normal!
Is anyone else having sleep issues? I stopped the steroids on Thursday yet I’m still awake at 3am each night.
Good luck to those starting round 2 over the next few days, make sure you keep up with the fluid drinking! My current thirst quencher is diet tonic water mixed with lemon squash and lots of ice! Sissy xx
I have 7 injections but didn’t seem to have any side effects from them last time except the day after my last one I had pulsing lower back ache which I took paracetamol for. Don’t know if it was caused by the injections though because it was 24 hours after the last one.
Not massively looking forward to the next round tomorrow! Have nearly drank 2L water and been sorting out my bedroom so it feels less cluttered. My daughter Becky (24) is back for a few days next week as its her half term. It’s a shame it falls on my spaced out week, but will be so nice to have her home for a few days
Xxx
Kim, I had lower back pain last night, I took my last injection out of 7 yesterday at 11am and back pain started at 7ish last night, I wonder if it was the injection. I don’t seem to notice any SE from injections, but maybe that’s what back pain was from. Debbie x
Hi Claire. Glad round 2 over for you! My second one felt quicker too… Can’t say same for three! hoping SE will be minimum for you xx
On hair front… I’m post FEC 3 by 11 days now. Still have hair though quite dry. Still shedding lots but it’s still there. Very thin no bald patches. Have a bag of hair looks like a nest! Lost about 40/50% I think? I’m also getting tender areas on scalp and it’s still tingly/fizzy! Dreading cap again as its gonna feel colder!?! Fingers crossed Hun it’ll all be worth it for us?! Xx lots hugs Tina
Kim & Debbie - as the injections are making your bone marrow produce more cells you get lower back ache as the pelvis is “full” and busy particularly the more injections you have. If the pain isn’t better with paracetamol/ ibuprofen you can ask for a single injection of pegfilgrastim if your centre offers it. It’s expensive but better tolerated especially with the docetaxel which causes overall muscle/joint pain.
Debbie I just read your post from 5th. Tingly toes and fingers may be neuropathy. Are you on docetaxel(T)? It is a known side effect so mention to your doctor/specialist nurse.
Cold cap ladies- well done for persevering. I really hope you manage to keep your hair, you so deserve it!
Welcome Elizabeth! I don’t know why we all have different drugs in different orders. I dare say those clever oncologists know what they’re doing!
I’m struggling to keep up with everyone -going to make a list of names, usernames and treatments so I don’t lose track!
Love to all and good luck for #2. Xx
Been home about an hour, had a cup of tea and an eccles cake, taken my anti-sickeness tablets and booked my next blood tests at the Gp surgery. It seems I need to have my bloods checked after 7 days each time, not sure why but the chemo nurse thought it might be because they want to keep an eye on my kidneys.
It all went well, same nurse which was nice. She’s very chatty, so kept my mind off what was happening! Like you Claire - now waiting for the side effects to start! Feeling more relaxed about it than last time, probably because they weren’t too bad - so I’m really hoping they’re not any worse this time!!
Debbie, I mentioned my lower back pain and she said it would have been the injections. Also said that the pain will be worse when I get onto the T cycles!!
Hope everyone else is doing OK? Jolie and Cassy, are you also having your next round this week? Hope all goes well (and anyone I’ve missed - think there’s a couple of you on weeklies? hope that is going well too)
Tina - good of you to drop in on us, fingers crossed for you hair - you’ve done really well keeping up the cold capping (you too Claire). Sorry that round 3 of FEC wasn’t so great tho I will be following you December ladies for tips and advice for the T cycles - especially nail advice, I’m putting onicolife drops on mine at the moment to strengthen them up.
Claire, when I read about your Emend I literally gasped out loud ‘oh no!’ They’re not the easiest tablets to get out the packaging are they?! I know they are one of the more expensive drugs, but the company could really cut the cost down by rethinking the packaging - what’s all that about? It looks like it’s a sample of posh perfume rather than 3 anti sickness tablets! (Over packaging is the thing I rant over most!)
I thought my side effects kicked in quicker this time, but we reckon it might be because last time I was just waiting for them to get worse so not acknowledging them soon enough (if that makes sense). One think I do have which is different is a sore forearm. Have it on my surgery side too, but know what that’s all about. Started to have it mildly on ‘chemo’ arm too, put it down to bring on my phone too much, but it was sore as the chemicals went in and it’s sore now (not red or swollen tho). Got my blood test with my GP rather the a practice nurse on Monday so assuming it gets no worse I’ll have him look at it. I’m quite lucky we have a GP who does blood tests, he’s a junior doctor training to be an A&E doctor/consultant (or something) and I think I’m his only patient going through chemo so he’s really chatty!
Just tried to take 2 tablets at the same time - mistake! One started to dissolve at the top of my throat - yuk!!
Enough of my rambling! Have a good day everyone xxx
Tina, is there a Toni & Guy near you? Our local one has someone trained with MacMillan who would be able to help with hair loss and wig issues. I went to our local one last week - just walked in to get my hair shaved so didn’t see the Macmillan trained hairdresser, but the young girl in there was amazing, really sensitive as was the receptionist. Maybe worth a try? As for ‘hairpiece’??? Wig is bad enough - but hairpiece!! I’m with you on that one! I call mine my hat - cos that’s what it feels like!
I’m fairly happy with my wig now but wear my headscarves at home as they’re so much more comfortable. The thing I found was that wearing a wig out in public I blended into the background whereas my headscarf drew attention to me - even at the chemo unit! So that’s how it’ll be with me - wig in public, headscarf at home!
I had my wig on it’s stand on the side in the bedroom but hated looking at it so it’s back in its box and the stand is shoved in the wardrobe!
Hair is shedding fast - impatient for it to go as I’m sick of wiping it off the sink, shower and bed (even tho I wear a cap at night) I’m still washing what’s left of it cos it feels relaxing, then I gently blow dry it so I can get the headscarf on ASAP!! Then I get the Hoover out to get it all off the bed!
Day 3 post chemo, day 1 of injections. Chemo fog setting in …
Take care everyone xxx
I know what you mean about going to your own hairdresser, I have avoided mine since she trimmed and coloured mine before Christmas! It’s worth a try ringing your own tho, she may even do a home visit?
As a non coldcapper, I admire you both for going through it! How can someone say it doesn’t work, when I’ve seen ladies on other threads having success? It might be thinning your hair, but I’ve read that o cr you start T then hair quite often starts growing back. Tina, you’ve managed 3 - keep the faith I say! I know you’re finding it really tough, but at the end of the day you’ve given it your best shot!
I keep dipping into your Dec thread for nail tips! Just of now to rub oncolife drops into mine - loosing my nails worries me more than my hair (my hair was pretty rubbish anyway!)
Xxx
As soon as I got home the headcarf went on for comfort mind!
hoping SE will be minimum for you xx
I will be following you December ladies for tips and advice for the T cycles - especially nail advice, I’m putting onicolife drops on mine at the moment to strengthen them up.