I'm late to the January party but starting FEC-T this Monday. A bit like cramming for an exam and just really starting to delve in deeper to the SE and remedies etc! And getting the hang of the forum.
I have triple negative and over 2 ops I've had a mastectomy and axillary clearance. 4 weeks since mastectomy and feeling ready for this next stage to start.
Going to browse through more now to see if there's anything I missed!
Look forward to meeting you all. X
I'm due a picc line. They couldn't fit it before chemo number 2 (next Tuesday for me) at my hospital and wanted me to come into the hospital during my week 2 of my second EC to have it fitted and I refused as that's the week my wbc drops and I would have felt really anxious having it fitted then so I'm having mine done in week 3 of my cycle before my third EC. I imagine it's harder to bring an appointment forward, rather than put it back, so in your position I would ask for it to be done the week before your next (3rd) chemo. RE: hair, there are lots of things you can do like using oils for your scalp and shampoos that boost hair growth, even minoxidil was mentioned by a lady on here who was cold capping and kept her hair. I posted some suggestions lower down this thread and all are topical, with the exception of biotin supplements of which you should be able to ate 900 iu per day safely. Obviously run by your onc at next appointment. For anyone with sensitive scalps, chillow pillows are great. Can be bought on Ebay/Amazon for under a tenner and keep your head cool at night, just slip in between your pillow and pillow case.
Hi G that's great to hear. Is the one they gave you at the hospital very heavy - I've heard that they are so that's why I thought I'd get prepared. What colour is yours? Mine's a lovely torquoise on the front and lilac mix on the back. I love it.
Just wanted to reassure you about having the PICC line, I had one throughout my chemo and I had no problems at all. It didn't hurt having it inserted or when taken out. It said on my letter that relatives couldn't come in with you, but they let my daghter stay with me, so it might be worth checking. Do you think it might be worth phoning your onc on Monday to see if they could sort you being fitted in before Thursday as it doesn't seem at all fair that they're making you come in the day after you've had chemo. Or if you've already had chemo on Thursday via your vein, can it be dalayed until nearer your 3rd chemo when you're feeling better? I don't know if the procedure's the same in all hospitals, but I had to lie on a bed to have mine fitted which wouldn't be good for you if you're feeling sick.
I don't know if I've already mentioned this, but I wore the travel sickness bands whilst having chemo and for a few days afterwards, so they might be worth a try if you haven't done already xx
Ah thanks ladies, not sure if its smiley and fun or "drugged up to the eyeballs".. but I'll take the compliment. you'll soon be posting your new mad hairdos...
hi January Chemo Campers! I've just been reading through your latest posts (hope you don't mind) and it really brought tears to my eyes as you all deal with the hair loss. I was transported straight back to that day when I braved the shave. The head pain when its shedding, the prickleness when laying on your pillow (that goes once all the hair has), the worry and fear for your children.. bless you all... I remember it so well (and it was only a few months back). Had to smile at the stories of hair disappearing "elsewhere".. I remember that too... mine fell out in my knickers virtually all at once... what a fright! In terms of using something to encourage hair back... I use the Lush hair shampoo bar called "new"... its a little red circle thing. I began using it when the first hairs starting showing and (also rubbed it into where my eyebrows once were). I think I said before my hair began growing during the last 2 x T chemos, 4 months since the end of my chemo and I am having a little trim next week to remove the startings of a lovely mullet! If I can I'll upload some photos.
hang in there girls... you are doing wonderfully...this will make you smile.. the first place i remember seeing new hair growth was my toes....Bloody Cancer!!!
Kip.. heres my before and afters (and the after one was a month or so ago!).. Excuse the eye bags.. just another joy of BC
Well AC#2 was uneventful, the nurses are all so nice which really helps a lot. This time I was nervous but not terrified like the first time around, just knowing what's to come made it easier somehow. The good news was that my blood counts including neutrophils were "all excellent, better than before you started"!!! Not so happy about having to have a neulasta injection tomorrow, but I definitely don't want another trip to hospital.
Now I'm home waiting for side effects to kick in.... oh joy. Do the rest of you come home and rest, or just do normal stuff until you can't any more?
Oh and I didn't manage to shave last night - I got my husband to cut as close to the scalp as he could with scissors (we both shed a few tears!), then got into the shower with the intention of shaving the rest, but I couldn't see what I was doing, the razor was getting clogged up etc etc so I gave up and went to bed. So my current new look is very mangy and motheaten with obvious scissor marks all over my head. More concentration camp than proper bald. I still get a shock every time I see myself in the mirror. The kids have been ok, lots of extra hugs from my 7yo (as if to reassure herself I'm still the same mum underneath), but not entirely comfortable yet.
Hugs everyone & good luck G, MMJJ, Wantolive & anyone else also having treatment today.
sunnydaze, yes good carrier oils would be coconut, castor and for those with tender scalps almond oil is a very soothing carrier. You'll find biotin (b vitamin) is also used in many shampoos that promote hair growth and if you take up to the EVA you won't do yourself any harm - however do run this by your onc so they know. I checked I could do all of this first.
I don't know if any of you are near a Haven centre, if so there might be a herbalist there who can supply you with an oil for your scalps. I know there is one at the Haven in Fulham, London.
I know G, i am a bit obsessed I think (!) probably because I lost so much hair before. I was devastated. At the moment I still have mine but aware that could change tomorrow as this is my first time having chemo so unsure how it will affect me and when.
Wantolive, I hope you get some rest before tomorrow. Will be thinking of you all xxx
Hi B74 and sunnydaze, the reason live yoghurt and sourdough are not advised is they both contain bacteria, sourdough bread is made with a 'starter' which is a combination of yeast and bacteria. Ordinary bread is made with only yeast which isn't bacteria. I miss both but for what is a relatively short period in my life of treatment I have decided not to take any risks and follow the advice given, frustrated though as live yoghurt protects against thrush which I have read can be a s/e of EC and Paclitaxel. Am making do with supermarket greek style yoghurt
G, you asked about hair supplements further down the thread. I've had hair loss before from anaemia which was really upsetting. I'm prepared if it happens to me again this time from chemo but I decided to do all I could to prevent it, including cold cap. I asked my onc if I could take biotin and b complex throughout chemo and she said yes but I had to stick to the EVM, for biotin it's 900ug. Rosemary oil also good for the scalp (came out as good as minoxidil in trials) and vitamin d oil. Also, if your internal vitamin d level is low (which is really common in the northern hemisphere) hair won't grow as fast, so might be worth asking them to check your vitamin d, if they haven't before you began chemo. Finally, I swear by Watermans shampoo for fast hair growth. Also to avoid build-up neutrogena /t-sal shampoo is excellent. I hope this is of use maybe.
Good luck to everyone for the next round xx
Glad you're feeling a bit better today Stuckat14 🙂 If it's any consolation I suddenly seemed to emerge from the land of spaced out oddness yesterday exactly a week to the day of my first chemo and feel pretty much back to my normal self now. It was very strange, almost like someone had switched my brain back on. My mouth feels rather revolting though so that's at least one sign that the drugs are still working their magic.
Re: hair loss - for everyone curently shedding - does it all start to shed at the same time from all areas ?
There are parts of me I haven't seen hairless for years! I fear the drains will be blocked in no time.
Re: kids - yes it adds a whole new layer of cack to what is effectively the worst thing I've ever been through (and oh how I used to whinge about work/childbirth/life). It's the endless worry that I'm screwing up my seven year olds childhood versus the stark realisation that if I don't take these nasty drugs I will be screwing things up for all of them even more. He seems to be coping okay with things although probably getting fed up with repeatedly being asked by me if he's okay. Luckily my two year old is two and therefore remotely disinterested in anything not related to Peppa Pig and the baby is too busy learning to crawl to care if I am bald and sad at times. It is hard with small kids but I fear it would be much harder for you guys who have older children who are far more aware of what's happening and more likely to worry. I take my hat off to you all. I like the idea of the photos though - great idea. Soon we will have luscious locks again.
Hope y'all have a good day 🙂
Hi everyone - wow - I went to sleep and woke up to a new look forum and a dozen new messages! G how have your kids reacted to your bald head? (sorry if I'm getting mixed up but I think it was you who said they were really worried about it?) Sunnydaze I'm sorry you're feeling worse this time around - oh dear - not good to hear! - but also not really surprising I guess. This stuff knocks you around so it must get harder & harder for our bodies to bounce back. I certainly don't feel as good going into #2 as #1. Sparkie2001 - I don't know how you're doing it with little kids. My youngest is 7 and they've been on school holidays for the last 5 weeks which has been tough enough, I'm counting the days (6) til school goes back. (Only so I can get more rest time!!) Wantolive - geez I wish your husband would step up and support you by learning how to clean!! I can't believe you'd be up that late on chemo night cleaning up his mess. Time to put your foot down?
I'm 19 hours into my fast ready for next infusion Fri, feeling a bit weak but the fasting doesn't seem as big a deal as last time, maybe because I'm just so scared about the infusion and afterwards. I now just want it over and done with. Today I'm taking the kids roller skating and to the orthodontist and preparing a couple of meals and tonight I'll shave. I've been putting it off as long as possible but last night the back of my shirt was like a rug and lying down felt like pins in my head.
Take care everyone, thinking of you all xxx
Hi stuckat14, I am on 4x EC (1st one was 8th Jan) have you asked for Emend for your sickness? It's expensive to NHS but a very good drug. If they haven't given it to you please ask your onc or bcn to have it for the next round. I suffer with nausea quite easily but this helped me enormously. You should have it before your chemo then each day for 2 days afterwards.
Sunnydaze, i really miss live yoghurt too and not allowed sourdough bread either! I'm on 4 x EC and was told bloods start dropping on day 7 and come back up day 14 onwards, onc said the drop can start as early as day 5 though. Please take it easy and rest and I hope you feel better soon.
Hi Wantolive, I do try to get organised before chemo. Live alone so try to have a full fridge and freezer in. I ate pretty lightly first few days but on day 5 was back to normal eating, no taste changes as yet. I've been brushing teeth or rinsing mouth out with salt water each time after eating and for first time in my life using a tongue scraper as taste buds are on the tongue. If anyone here is on paclitaxel I read that sucking ice lollies when you have infusions helps with taste thing - not sure how you keep them ice cold though in chemo unit. I have a cool bag but it's not a freezer.
G, thank-you for your good wishes hon.Hair is holding on for now, I'm day 15 since first one and shedding could happen any day so thanks for the symptoms. I think i had a tingling on top of scalp on day 12 but it went.I definitely will continue to cold cap even I lose it all because from what I've seen hair does grow back faster afterwards and same as it was before. Got 3 friends all early 40s going through this and at different stages (some had chemo first). I'm going to continue with the vitamin D oil at night too.