G thankyou you have given me hope x
Yes I totally felt like a dead battery! (see my post on 10 Jan for example). Feeling basically normal again now… there is definitely hope!!
B74 thankyou ?
Yes, I felt rough for the first week too. I have got 5 days to go until my next”infusion”? and although I’m worried, at least I know what to expect this time? I have been making the most of my time going out on my bike and walking most days and eating well. I “braved the shave” yesterday. Exactly two weeks to the day I woke up and my hair started to shed. Quite distressing even though I was expecting it. I haven’t gone for a Sinead O’Oconnor, more of an 80’s sharp flick head , with a very short undercut. It looks quite stylish and I definitely felt more liberated, not so distressed. I went with a good friend to the barbers. Barbers know how to do a good short cut and it only cost me a tenner. I liked the straightforwardness of the barber shop. Men are straight forward, no prying questions and consequently no tears. ?Sadly, it will be a Sinead O’Connor in the next week to 10 days I guess and then baldy here I come ??? My sister tells me I need to get my nose pierced again and a pair of big hoop earrings. Ha ha ghetto girl at 49 ??? Stay well and up beat ladies. Strength in numbers ???
?? hugs ? to all xxx
Thank you LB and you too xx
Been a bit off the radar since Thursday, and wow, what a busy thread this is!!! I have a lot of catch up reading to do, not to mention thanks to give to those who helped me feel more in control by offering advice and tips - thank you so much!!!
So, first FEC is done and, apart from a swimmy head and ridiculous tiredness, I seem to have managed ok.
I did the cold cap, which surprised as, after just 2 minutes in it was unbearable. My husband set a 15 minute timer on my phone and I kept watching it to get me through the worst bit and, once the nurse was there administering my reds and whites, I was less aware of it.
Must find sone unscented conditioner to take though as Herbal Essences was slathered on for the cold cap and the smell made me gag terribly. Smell has affected me massively, and so quickly too, which I wasn’t expecting.
I’ve not managed much to eat since the end of the session, and I’ve struggled to know what I want. I’ve pretty much existed on whole grain cereal, wholemeal toast, fruit and sone soup. Sweet stuff doesn’t appeal at all for now.
Could really do with my tummy sorting itself out though or I’ll be struggling. I’m eating dried apricots daily and taken 2 doses of Senna Max Strength in the last 48 hours, to no avail. Is that TMI?!!! Eating less and sleeping as I have been won’t have helped but I haven’t been able to do more.
I’ve been asked to go in after my next treatment to have a PICC line. Maybe I’m being silly but win’t it keep catching on clothes etc? Can it be taped down? I know it’s not a huge thing in the grand scheme of things but a stringing arm from catching it on everything when I dress/shower/turn in bed etc sounds quite unpleasant. Has anyone else got one?
late one here… first EC on 08.01 have 3 more to go then 4 pac. Spending time moistursing my nails with jennifer young definate beauty nail oil as read good things about it online. I cold capped - used large for better coverage even tho’ I’m average wig cap size- and tied a pair of woollen tights around my head to keep it on - felt very heavy and my neck ached like hell and my face was all squashed I had it on so tight. Let’s see what happens. FWIW, I’m using vit d oil on my scalp at night and minoxidyl in mornings - if you read about this online there are mixed results so I am aware NONE of it guarantees anything! I bought waterans shamppo and conditioner and planning to wash gently 3 times a week or i think my hair follicles will get clogged. I don’t suit short hair so figured i have to throw everything at it and then i know i gave it my best shot whatever happens. I had nausea which disppaeared after taking EMEND anti -sickness but then it came back later in the days following my initial chemo. By day 5 it went completely. 2 days constipation from steroids and i got prunes in and drank a fibre solution - macrogol - which come in sachets and that sorted it. Nothing else to report so far - so lovely to read everyone else’s journey too xx They told me at the hospital i can’t eat live yoghurt while I’m on chemo and I am now convinced I’ll get thrush :((((
Hello everyone
I am glad everyone’s chemo is going ok so far. I’m afraid I can’t offer any help re; cold capping or picc lines, because I have no experience of them.
Gencat, I am glad your return to work has gone ok. It doesn’t take long before the observations start hey! I’m sure you’ll be brilliant. I am an additional needs teacher, working in a unit in a primary school. I largely work with primary 1 and 2 children (Scotland) but haven’t worked since diagnosis in August.
Anyway, I wanted to put this out there and wondered if anyone has had bad headaches associated with their hair loss? My head feels tender as anticipated. I just wasn’t expecting the headaches. I have drunk loads of water, so I don’t think it’s dehydration.
Love to all ? sunnydaze
Welsh j - I have no experience of Taxol (yet) but other people have said the tiredness tends to be cumulative as you go on. I don’t think you should experience totally different SEs though. My MO said the taste, digestive issues etc are more with AC / EC, whereas Taxol is more tiredness and body aches.
Trixielady - I’m sorry to hear about your blood test results. Were you already dealing with other health issues (thyroid, blood pressure, cholesterol etc) or were these results out of the blue? I have no idea what you could do to fix it & get ready for chemo apart from just trying to be as healthy as possible (diet, exercise etc) - but probably not easy to turn around in a short time. Manuka or Lifemed honey is meant to be good for WBCs.
Sunnydaze - I remember someone else describing the sensation (when her hair started to fall out) as like a “migraine of the scalp”. So it sounds like the headache thing might not be unusual. Have you done the buzz / shave yet? I’m planning to as soon as it starts because I’ve heard it makes it hurt less - but no idea if that’s true. My head has actually started to feel a bit tender today, so I don’t think I have long - aghh!!
Hope everyone is doing well. I’m just wishing time would slow down, it’s like I’m speeding towards the next infusion!
Hello all,
Just catching up on your threads to see if I can help at all. Much talk about the sore head… I had the same, it was really quite painful, stingy, tingly and achy just before it started to shed but once I braved it and shaved it off the pain stopped. I think its the hair follicles reacting. Just picture them going to sleep for a while ready to spurt out your new crazy chemo hair once its over. Mine was shoulder length, virtually straight and mid brown (with a little fleckle of grey at the sides) now is almost white/silver grey with a fleckle of black and wavy and crazy so its an exciting time waiting to see what you will get back!
If you are suffering from constipation I found lactulose helped more than the Sennokot… my chemo nurse suggested lactulose instead as she said your body can get used to Senna? Not sure why it wouldn’t get used to lactulose either… mystery to me!
Kip
xx
Hi Kip, my own GP had actually said the same about the senna, think so far constipation and not eating or sleep well was my main problem so far I find it really difficult to drink at the best of times , so that’s what’s on my mind also hated the thought of my hair changing but if I can find away to make it less painful it might be easier to stomach, Kip where are you up to with your treatment? Xx
Hi Welsh J. I had my second Taxol yesterday.
My side effects in my first week were very minor - a bit of an upset tummy on the Saturday - which was five days later (that could have been the pizza from the night before!) and I’ve been quite spotty (although I have been slapping on a lot more moisturiser). My nurse said if I didn’t have side effects in the first week, this was likely to continue going forward, apart from the tiredness increasing.
I asked about hair loss and when I’ll know if cold capping is doing its job and the nurse said I should know by about session 5 or 6.
They asked me if anyone had talked to me about a line (which they haven’t) as having the treatment weekly can be quite hard on the veins. I’m not sure if I’m keen though.
Debs x
Hi Debs my veins were so painful from chemo, I had a line put in last week I was so scared. It was absolutely painless and the difference it has made.
Love tbird xx
Hi everyone, thought I would chip in with my cold cap experience. I am now in my third week after 1st FEC treatment, 2nd one on Saturday. I did the cold cap, I would describe it as uncomfortable rather than painful. I took paracetemol before as a precaution, also wore a head band to protect forehead a bit. I have been washing my hair every 3rd day with non-paraben shampoo and wearing a hairnet in bed at night to protect the hair - not very attractive. My hair has started to fall out yesterday but not too much yet and mainly from underneath, I guess where the cold cap does not have so much contact. Even with the cap you can lose 30-50% of hair. I washed my hair this morning and expected to see a plug full of hair but there was not too much. So fingers crossed.
I also had a Pic line fitted the day before treatment it was a bit painful for me for the first week because of the bruising but has settled down now, don’t even notice it. I have also been very lucky with minimal side effects, make sure you take the steroids they prescribe, my worse symptom was back-pain after the filgrastim injections.
Good luck everyone
Hello TrixieLady, this is where I am up to with my treatment…
I was diagnosed in April 18, grade 2 IDC, had a single masectomy (no recon) and SNB removal, found sentinel node and another one had cells and the third had micromet so had 3 x FEC and 3 x T chemo starting in July and finished on 24 Sept. Then had ANC, remaining nodes in levels 1 and 2 removed, none had cancer in them phewwww… started 15 x radiotherapy sessions on 29th November, finished 19th December. So all active treatment finished now. Oh and started Tamoxifen for 10 years, started in middle of November. So far, hot flushes and aches and pains (although the pains could be due to chemo taking time to leave your system) but needs must so ploughing on. It seems so surreal when you see how much you go through over those months and you feel you’ll never get to the end but you do. Now I am waiting to see Radiotherapy for sign off and then I think i will getting a mammogram around the 1yr anniversary of diagnosis and then I believe its 6 months and then 1 yr and then ever year for 5 years… not too sure. Its a funny feeling when you get to this point… suddenly you are not at the hospital all the time and feel a bit alone… struggled a bit to be honest but that seems to be the norm. Suddenly you have to find you life again… I’ve signed up for a HOPE course at the hospital which is designed to help you move on, how to get to like you body again, how to address your fears etc.
You ladies are doing really well, its so good you found each other, my monthly chemo forum kept me going (and still does) its only people going through it who can truly understand…
Big hugs…
Kip
xx
Hi Kip, this forum is fantastic it’s really great to hear from ladies that have been or going through it, it seems like a never ending road of hospital appointments and worrying about results and other pains appearing, how did you find the chemo? on T did you also have the herceptin? administered? how did you manage around friends and family with risks of infection? I can only imagine what you’ve been thinking and feeling coz my chemo hasn’t started yet but I’ve had lymph node clearance in Dec cancer in one and also had a mastectomy in November chemo after heart scan just waiting for appointment, at least your going to get help to hopefully get your life moving again, big hugs, not sure the age ranges but I’m 50 xx
Hi,
TrixieLady: I’m 48 so not far behind you. To be quote honest I think I was fairly lucky with the chemo. The FEC part I used to find I felt a bit sickly (almost pregnancy like) for about 4-5 days and then had the loss of taste and sore tongue but this used to sort itself by about day 8-9. The tiredness builds up but I don’t think I was too bad, only remember 1 or 2 days where I had a sleep during the day. BUT I am very luck in that I work part timea and from home and was able to fall out of bed in PJs and sit at a desk for a few hours, my work is only centered around answering phones if they ring and a bit of typing so somedays I laid on the sofa and read a book inbetween or pottered around. The hair loss was a big big milestone for me. I had told myself I wouldn’t let it bother me “Its only hair”… but when on day 12 of the first chemo it started to go… my resolve followed suit. By Day 15 I had to have the shave… I will never ever forget that day, in fact I feel tears just thinking about it…a friend sat and held my hand and my son watched as they shaved the lot. I couldn’t bear to see myself for a few days but I had a nice wig which everyone said looked fab and used that and went around the house bald for most of the summer as it was so hot. It was hard to make people understand that even though I had lost a boob, losing my hair was harder. I felt I had gone from being a healthy person to looking like the chemo patient. Having said all that, after a couple of weeks I did move forward and accepted it… never like it particularly… but accepted it and wow it saved time in the shower.
The T Part of chemo was a differnet kettle of fish. I didn’t have herceptin, just docetaxol and I was dreading it. I had read about it, it was going to be awful etc etc and I was so scared. But it was anymore awful… just different I guess. The SEs I found didn’t start for a few days, the worst being the horrible mouth, T seems to affect that more I think. I got oral thrush during the 1st cycle of T and mouth ulcers but the hospital sorted me out and gave me medication for the next 2 cycles which helped it from getting too bad. The loss of taste was worse, lasted longer. I did have a stay in hopsital during cycle 4 (first T) when my temperature was high, 2 nights in a single room wasn’t pleasant but they looked after me and made sure I didn’t get an infection. The next time round I was fine, during the last cycle I had the self administered injections to ensure white bloods were high enough for the last bout. Eyelashes and eyebrows going was hard too, they didn’t go until chemo 5 but they are back now. My hair was growing again during chemo 5 (apparently thats quite common if you have FEC first and then T). Now its full coverage. Oh my thumb got numb during T too, look out for numb fingers and toes and report it as they can reduce the chemo to prevent neuropathy. After chemo finished my thumb came back to normal but the nails are quite ugly, very short and have ridges, par for the course I’m afraid but they are growing too. As they always say, everyone reacts differently to all of this and its best to wait and see and just deal with it as it happens. Don’t be hard on yourself if you need to rest, ask for help it you need to (my mum used to come over once a week and clean for me so I didn’t need to worry even though I could have done it). Hope that helps.
DiKat - after treatment ends? Well I have read everything going about what I should eat, what I should do etc etc… the conflicting reports are a nightmare. I am taking magnesium and zinc for my joint aches (chemo or Tamoxifen not sure which is causing it) but checked that with teh Onc nurse first. As for eating, I wasn’t sure if I should be avoiding dairy (many posts suggeste that) but I asked at the hospital and they said no, just eat a balanced healthy diet… don’t worry if you drink a bit, keep within the guidelines and just try to maintain a healthy weight and do some exercise. Its a minefield of information and quite overwhelming but I was asked if I wanted to see a dietician for some advice and although I haven’t yet I may ask. Its hard to move forward when you wonder what you should be doing for the best but I think just be sensible and try to eat well, I still eat dairy, meat, drink alcohol and eat chocoloate:smileywink:
I know this is a bit further down the line for you guys still but worth a read:
"After the Treatment Finishes - Then What? by Dr Peter Harvey… you can find this on line and it hits the nail on the head! Ive just printed it off to show my hubby, gives him an insight into how this feels to.
Keep well
Kip
xx
Meant to add DiKat… my chemo nurses always told me not to worry about the diet during chemo… you need to eat what you can when you can… its not a time to worry about that. If you are struggling to keep weight on, then fill up when you can with what you can!
Kip thank you, you explained that lovely found it really informative, just received my heart scan for Wednesday, its such a strange feeling that probably only you ladies will truly understand but I can’t wait to get started, because every ache & pain sets my mind on the first seat of the biggest rollcoater xx