Hi Capelmum,
Yes, the crawling sensation is the precursor to hair going. Mine started on Day 14 of my first FEC cycle. By Day 18 it was largely gone. Weirdly, I have done FEC 3 and am at Day 18 but still have my hair everywhere else - only the head hair has gone but I guess the t will take some of the other bits.....😕
Funnily enough the the hair thing only worried me as it came out. Once it was gone it was strangely liberating not having to think about when it would go...
Sue xx
The December thread is up, which is where I really belong. I wanted to say thank you all for sharing your experiences, it's been really helpful to know what other people are actually going through. I shall continue to lurk and maybe post sometimes. Or lots, if December is quiet. Good luck, everyone!
I shaved my hair off a couple of days ago. I wear a beanie hat in bed as its just too cold. I know you can buy sleep caps but I just bought a hat from primark. I seem to be losing hair from everywhere but my eyebrows and lashes are still intact -would be good if I kept them but not holding out too much hope.
Second EC tomorrow so the cycle starts again.
Hi Dragonfly,
it is so good to read your post. I did a very similar thing. It helps so much to get some kind of feeling of 'normality' working when we can. Of course providing we are safe from an infection point of view!
As you go through chemo, it may become more challenging and I hope you can keep your routine up for as long as possible, if not all the way through!.
Hugs
Sue x
Morning ladies,
hair is falling out massively today, going to get hubby to shave it off tonight, fed up of getting the hoover out 😳, then I get to wear my wigs which I'm kinda looking forward to, 😀 it's just the bald head at night that I'm not.
Snail88 I can't work either as I'm frontline nhs and too many sick patients coming through the door. Missing it though especially on my 'feel good days'. Hope you are feeling better.
Hugs to all xx
Hi Snail88,
As you are a teacher it makes sense that you aren't going in to work. I'm also not working and avoiding crowds. I mentioned to my chemo nurse that it might be a bit too careful but she reassured me that there is no such thing as too careful during our neutropenic periods.
On the other hand your liver is really important. If your oncologist wants weekly blood tests, I would not hesitate to go in. They will be very careful regarding germs and if your fear is from other patients, then could you get a medical mask from the chemist to cover your nose and mouth?
I would discuss your worries ASAP with your BCN or chemo nurse. From my experience ( I'm an October starter), they never dismiss even the silliest or most paranoid questions I have had. They know how tough this is and are always caring and patient. Don't put your liver at risk without talking to them.
Hugs and good luck.
Suex
Hi Capelmum,
It's so good to hear that you have been able to get back to work and felt better by day 8. I was day 2 yesterday and felt OK.....tired and queasy but nothing like the first night. I work out of a number of different offices and am also able to work from home. My plan is (subject to SEs) to take the first week off after chemo, work from home in the second week (whilst immune suppressed) and head into the office in the third week....provided there are no bugs going round. My work have been fantastic and are very supportive. Whilst my job is not an important one (I'm not saving lives or making people's lives better like so many of the people I've met since my diagnosis) but it is really important to me and my self-esteem and feeling normal and valued.
Jacksprat - I just wanted to wish you all the very best of luck for today. I am confident that it won't be as bad as you fear it will be. Make sure you wrap up warm for the cold cap and have hot drinks throuout if you can. Will keep everything crossed for you. Let us know how you get on.
love and hugs.
Thank you for your words of encouragement. I am feeling much better this morning. Still queasy but have managed to go out for a walk with the dog and am having some soup! The lovely chemo nurse who 'did' me yesterday called me this morning to check up on how I was doing and I mentioned I had thrown up four times. Within half an hour they had called back and said they would give me Emend? next time as they didn't think I should be throwing up. They are so lovely. Weird question though....I am having real hot flushes since yesterday...properly beetroot but my temperature is fine (if a little low). Is this a known reaction to the chemo drugs or has my body decided to go into early menopause...just to add to the fun!
I've got my positivity back today....it took a bettering at midnight last night when all I could see stretching ahead was months of having my baldy head shoved down a toilet but as you all say....we will get through this and come out of it battle scarred but stronger!!
Morning Gang
Skye- thanks for your lovely words of encouragement, im feeling a bit stronger about it all this morning.
Dragonfly- I feel for you hun. As you and I are only days apart from starting we will probably be going through similiar issues at the similar times !! Im really rubbish with being sick so dreading this SE !(especially when it won't of been brought on by alcohol !) Also anxious about cold capping and have heard stories that this did feel worse than the Chemo itself ! But want to give it a try. Four months does seem a lifetime away but i guess every treatment down is bringing us closer to the end .
We can do it ...we can do it...we can to it ( repeating this to myself as a mantra !)
try and have a good day gang
xx
Morning Ladies,
Dragonfly ask your oncology team for stronger anti-sickness they should be able to help you. Hope you feel better soon it will pass.
Fiona, my GP prescribed me some omeprazole last week to help with the heartburn which really helps.
Hair update, really on the move now, head feels very tender today. Picked up my wigs yesterday and a couple more hats, this chemo is costing me a fortune 😳 But if we can't pamper ourselves now, when can we 😀.
Hi,
i had had my first dose of FEC today and found the actual treatment process to be reasonably uneventful and painless. I think the cold cap was worse than the drugs. However, I have felt hideously nauseous from a couple of hours after the treatment finished and have thrown-up 3 times in four hours. I took the anti-sickness meds as prescribed but from reading all the comments here it seems to be about finding the right combo for you. I am trying really hard to stay positive but the thought of four months of this (with really bad hair thrown into the mix) is depressing. I was hoping to work through chemo but, at the moment, that seems somewhat optimistic / naive. I can't even imagine being able to leave the house.....any advice???
Hi Capelmum
Im more comfortable about my hair now, had a shower tonight and some rubbed off - aw well it's gonna happen anyway. Got lotrps on the top do just patted it dry. Hope I don't end up looking like a pineapple!!!! lol
Had my 2nd FEC yesterday and met a lady on the same as me 3 XFEC/3 Tax and her hair had started growing in too. So it might well be the case we're not without it too long. Anyway, we'll save a fortune in shampoo!!!
Big hugs n kisses
Skye xxx
Hi Jacksprat
Try not to panic too much - the fear of the unknown is the worst thing. Once you start your treatment you'll feel a lot better.
Feeling scared is normal as is having a wobbly and crying and feeling helpless and so many other emotions that we all go through at one timer another. All perfectly acceptable and understandable given the circumstances.
We we will all get through this together. If you need any help of advice uou will always find it here pet.
Big Hugs for Thursday - will be thinking of you.
Hugs n kisses to those who need them.
Skye xxx
Hi All
Just having a wobble thinking about Thursday... 1st FEC and cold capping.
think i have everything i need, just hitting me that this is really happeneing !!! . My test results from lumpectomy and auxillary nodes removal came back allclear (thankgoodness) and Chemo, radio and Taxofen all recommended as preventitive. So im doing whatever i can to prevent it coming back but am suddenly feeling scared !!
Hope i can sleep !
love to all of us going through this x
Hi Capelmum
Try and get Omeprazole for the heartburn - it should help a lot.
Hope your Xmas plans go well - I'm sure they will.
Im losing hair dart, mainly at the sides and back, but no-where else Unfortunately. Your episode in the shower made me laugh. I guess mind must be working up the way lol.
Big hugs.
Skye xxx
Hi Sarah
Ive just finished 2nd Cycke yesterday and felt tired today, usual sore head and can't be bothered doing anything. Slept for quite a few hours throughout the day, and still feel knackered.
Re the lumpectomy - yes, your Breast shaoe changes - I had a 2cm tumour and the scar is 4cms long. There is a swelling round the scar (scar tissue) and my hood does look a big indented when I have no bra on, but it's no big deal. My BCN said when I have Rads that will also change the shape and after recovery I will have a new "normal". Hope this helps.
Hope uou uou feel better over the next few days.
Big hugs.
Skye xxx
Hi regulars & welcome newbies
Been at hospital last 2 days as I've had diarrhoea every day since chemo 2 (15th). Taking max Imodium & still not stopping it. All tests ok but white blood cells very low. Feel sooooo drained. I get IBS diarrhoea usually so they think as its my weakness anyway it's just hitting me harder there. I've got the heartburn too & have been prescribed the lansoprazole daily. It's helping a bit. I've got a nightcap too as my head was getting chilly at night. What do bald men do?! We've had to cancel our ski holiday at the beginning of Feb which my 2 boys (14 & 11) are gutted about but hoping to do lots of little things to make up for it. Planning everything around chemo dates & Christmas is a nightmare isn't it. Decided to have our first Xmas just the 4 of us & then if I'm up to it might visit family. No pressure then. Got to do what we can when we can. Hugs to all. xx
Hi fiddlercrab
Sorry you have had to find yourself on a monthly chemo thread, but it really is a great place to be for support through this specific journey. It can seem such a lonley place to go through chemo, as rarely anyone around us knows, what it is like. So many questions, niggles and worried as we go through it. It really helps to be on a thread, where experiences and knowledge can be shared. Rants and raves, tears and laughter are all part of these threads and many, many virtual hugs.
The December starters thread will be up in the nex few days - and, as usual, a lot of tips of how to prepare for chemo will be at the start of the thread.
Hope to see you there.
Hugs
Sue xx
Got my start date! It's 6 December (so I'm in the wrong thread...). Also found out that the lymph nodes are involved, and it is weakly ER+ and weakly HER2+, so it's gone off for further testing to see if it's actually HER2+ or not. It feels good to have a plan, and even better to have one that puts Christmas at the end of week 3!
Hi,
My chemo nurse (I'm from the October thread and a bit ahead of you), told me Gaviscon alone won't work as the indigestion is from the chemo effects on the gastric mucosa. To protect it from irritation from steroids, foods etc, you need them to prescribe lanzoprazole or omeprazole. I would call them asap because my indigestion was always worse mid- cycle.
Hope that helps.
Sue xx
Hi all. Got the appointment letter for the CT scan through today - it's on Thursday. I was expecting to be told the date at my oncologist appointment tomorrow, so now my mind is working overtime and the nerves have stepped up a notch.
Had my first EC chemo on 4th Nov. My hair started to fall out on day 13. Decided to have it all shaved off today and had my wig trimmed ready to wear. My head feels quite strange and its really cold. Think I'll be going to bed in my woolly hat
Morning ladies and welcome Fiddlercrab,
Just been catching up on all of you. Been feeling 'normal' over the last few days, seemed to have more energy than the OH 😀, so feeling a fraud that my GP signed me off work for all my chemo 🙁 but I have to stay away from patients. Managed a Christmas shopping trip with my boy with a nice lunch out, like our QT time together.
Hi Fiddlercrab, make a list of all your questions for the consultant, I always forgot all mine when sat in front of them. Hope they make things clearer for you. Hugs to you.
Sarah, hope you feel better again soon. I think the weight thing might be something for all of us. I didn't eat or sleep much from the diagnosis to the op, then post op due to sickness, so lost a bit. But since chemo I've not stopped and I have a craving for pastry so have put all the weight back on 😳. The steroids can make you a bit puffy.
Fiona, it looks like we will be chemo buddy's as mine are moving to Wednesdays so my Christmas one is also due on the 21st, I want to put up the decs now so that we can do it early but OH says it's far too early. Just want to do stuff whilst I feel well.
The hair is slowly on the move, I shaved my legs last week and it's not come back, pubic hair fell off in shower on Saturday, which I seemed to find hilarious 😂😂, guess it's working upwards. Then head hair had a little shred yesterday, so got my friend to cut it shorter. Going to get the wig sorted this week.
Lots of love and hugs 🤗 🤗🤗 to all
Morning all.
PICC Line fitted on Friday which went ok. No real discomfort but at times over the weekend felt like I've had indigestion ! Collecting my waterproof cover from pharmacy today which will make showering easier !
1st Chemo is on Thursday !!! Bit worried as have woken this morning with one hell of a cold😷 so trying my hardest to get shut of it before then ! Don't want Chemo delayed just want to get started now !!
Am going to give cold capping a try... all this really is a whole new world isn't it !!!
Love to u all & hope you all have a good day x
Hi Fiona
The waiting has definitely been awful so far, especially the extra hour in the waiting room at the breast clinic to get the diagnosis because they were running an hour late! And now more waiting to get dates for treatment. I really wish they could just start, but dreading the possibility that they find something else in the CT scan.
I am seeing the oncologist on Tuesday, and the BCN have said that I will get appointment dates for the pre-assessment (MRI and CT and ?other things) and first chemo then. Hopefully I will also know more about which drugs and why too. I like to have all the information!
The small person is 8, he has taken it all really well so far after an initial wobble and now finds the idea of a bald mum very funny. (Edited - Xmas worry comes from the fact that we had a week away planned which might now be cancelled, leaving him without his grandparents/aunties/cousins and with a sick mum on Xmas day - but we will make something work)
Thanks for all the support
Thanks pernapus, hoping that the bad hangover is the worst of it and I can just mope around for a few days, but it hits everyone differently, doesn't it. Just wanting to get started really! My Christmas worry is more for my son - it might be the last year he believes in the Big Man and I want it to be fun for him.
Are there any key things I should ask the oncologist on Tuesday? All I know is that it's invasive ductal and quite large and straggly, so they are hoping to shrink in before surgery. I guess I also want to know whether the lymph node was clear or not (the results weren't back even though it was 2 weeks after the biopsy) and the ER and HER2 status if they can get than info from the biopsy.
Scared myself reading the 'reconstruction' booklet they gave me!
Hello everyone
I was diagnosed last week and they've recommended neo-adjuvant chemo, starting "sometime in the next couple of weeks". I've got my first appointment with the oncologist on Tuesday and find out then whether I will be a November starter or it will sneak into December. My biggvest worry at the moment is feeling sh*tty over Christmas 😞
Mornin everyone. Well its day 3 and feel ok at mo other than bit breathless when doing things. I cant believe how all similar we sound. i was so tired straight away after 2nd round. i did pick up next morning though. Has anyone else gained weight ? Mine is creeping up. Put on half a stone in 3 weeks!
Seagul, a friend of mine has extremely curly hair (afro) and it has come back exactly the same! Just taking a bit longer to grow as sooo curly.
Great to hear your news permapus. I too had the good news about the BRCA gene. Had to go and have clip put inside my lump as a marker on Friday morning before chemo as it seems to be shrinking. It was 3cm in breast and 2cm in node, but both feel smaller.
Does anyone else haxe a swollen face after their steroid pre chemo. Yesterday and today its really puffy.
Another question sorry...for those that had lumpectomy, i have to have this after 6months of chemo. I only have smallish breasts, will my breast look odd shape? Feel quite selfish asking this as i know some of you will have to have or may already had a mastectomy. So i apologise for my question. But its something ive been thinking about.
Hope you all are on the up soon after your 2nd round. Knowing its day 4 tomorroe, i may not be on for few days if anything like last round.
Hugs to everyone. xxx