Hi everyone, I've been catching up on all your posts, those getting through the first few days after chemo and those getting ready for the next one and those still waiting to start. This is a tough business! Sunnydaze & G I'm in a similar place with the hair. My scalp has been prickly and painful for days, I am shedding random hairs everywhere, I know for a fact that if I gave a tug it would just come out by the handful, so I am not touching it at all! As a consequence my hair is unwashed, unbrushed and basically just horrible looking, but I'm completely unable to accept the inevitable. Maybe tomorrow if I'm feeling stronger I'll do something about it.
I just got out of hospital today (after pleading with the registrar to please let me go - they wanted to monitor me for another day!) and am a physical and emotional wreck. I barely slept for the 3 nights (constant noise and disruptions all night - I'm not a great sleeper at the best of times). That on top of the IV antibiotics, bad hospital food and lack of exercise have left me feeling 10 times worse than when I went in. Far harder though was seeing all the very sick people on the oncology ward with me and hearing their stories. Obviously the hospital has the worst case scenarios and not all the people who've recovered and been 20+ year survivors, but it really did my head in. I'm hoping a good night's sleep at home will restore some of my positivity. There are only a few days until I have to start fasting for AC#2 on Friday, so I really need all my strength! It's a bugger because I was feeling so good before I went in.
Hugs & strength to all of you xx
Never know which thread to post in lol. I posted in Dec thread but seems more active here. I started my chemo 27th dec so probably best to post here
Had 2nd chemo yesterday. No problems. Just hate the waiting round when you get there. Had cold cap but my hair is falling out. Think I will have to brave the shave soon.
Got home and felt "bit" naseaus about 8.30pm This is when the severe nausea started after my first chemo. The nurse advised me to up my "when needed" medication so tried the Prochloperiazine which had to disolve high between upper lip and gum. I didnt try this one 1st chemo. And yes it worked. But I had been trying the fasting for 2 days pre chemo. Didnt fast completely but did cut back on what I normally eat. So maybe that helped too.
Had my 4 steroids today and yes have slight palpatations. So think it is the steroids. Have to take 4 a day for 3 days. Took them at 6am so hopefully wont disrupt sleep tonight too much.
Hi Sunnydaze, sorry to hear the shedding has started in ernest... that is the toughest of days believe me... once you have had the shave and given yourself time to accept the new look you'll feel better. Once its gone you no longer have that to worry about but be kind to yourself.. its a huge thing to deal with for a lot of people (me included) and it takes time to find your peace with the no hair look.. but it happens. Its crap its coincided with your daughters birthday, I was having surgery the day my son had his first GCSE, having chemo right through them and had to rock up to this Prom with the wig in situ... actually would have crawled there bald to see it though. I was also in hopsital the day he got his results, he still passed them though.. bless him. Just remember.... next year you can celebrate her 16th in style!!
Sunnydaze - just a big hug from me. I totally get where you are. My daughter was 15 in November and, due to my recovery from a second stint of surgery a couple of days earlier her birthday was pretty low key which was rubbish and then I had my first FEC just before Christmas so Christmas was pretty subdued too.
Well done to you for making a cake though - superstar!
I TOTALLY agree about the hair thing too - I thought I was kind of prepared for it but mine has been shaved off for a couple of days now and I can barely bring myself to look in the mirror when I have nothing covering my head. I guess it must feel more "normal" (whatever that is?!!) gradually...
Big hugs x
Hi B74... hope are you bearing up in Casa NHS. I had exactly the same during my T chemo, a 2 night stay. I had IV antibiotics and regularly blood tests throughout the day and by day 2 the neuts were 0.6 (still not great) but they said as there were no signs of an infection I could go home. I actually think I was a more risk of an infection in the horrible little room I was put in than being at home!! Hang in there... use the time to rest up and get waited on...
Hi debs, thanks for your message, great to know your side effects have not been too bad. I did have some nausea and aching joints for 2 days. Both relieved with paracetamol and the anti nausea meds. Also some diarrhoea 3 days post chemo. I kept a journal to see if this week follows the same pattern. The nausea is much the same but manageable. I have a picc line and is much easier than stressing they won't find a vein as mine are terrible. It's ok , I attend hospital one day for bloods and line redressing then chemo the next.
Hope you have a good week xx
I'm 50 in July, so all quite similar. I love your grey crop Kit, really brings out your eyes. I've always had my hair coloured but its it's pretty much full grey so that's going to be interesting for me too when it grows back x
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!
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
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.
Hi Kip 'm a December starter so post on that forum. If you've seen any of my posts you'll know I'm struggling big time with the chemo. It's really useful hearing your journey and bet it must be really strange to no longer have all these appointments. I'm struggling to keep my weight on so not adopting the most healthy of lifestyles at the moment. Im interested to know how you feel about lifestyle once you've finished treatments Kip. Does it send people into a blind panic about doing only the right?? No alcohol, parabens only wholegrains wholefoods etc. etc. I'd be interested to know what anyone else thinks too. I've read the lifeafterlola blog and found that interesting. Am I going to be a nervous wreck about anything that I eat, drink, use for ever! X
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...
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
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.
I can recommend the Lactulose as well. I haven't used it personally, but the pharmacist recommended it for my elderly dad-said it was gentle, but effective! x
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!
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!
Sunnydaze, sorry I can't help re headaches as I didn't have any. Is it worth giving your chemo unit a ring for advice?
Thank you for your kind words about my observation A bit dramatic, but I'm trying to think to myself that if I can get through chemo, an observation is nothing! RE on a Friday though...! I was asked today if I could do some extra work next week, so definitely back properly now! I've gone back to a harder job than the one I left-I was covering PPA time before, now I'm job-sharing and teaching an age that I've not had so much experience with! Luckily I taught them a morning a week when they were in Reception and they are a lovely class and I'm enjoying being with them. They made me smile last week-I'd been wearing my wig when I returned, but ditched it over the Christmas holiday. They were very observant that I'd had my hair cut and one thought it looked a bit of a different colour! At least my wig must have looked realistic!
I was really nervous about returning-I was off for 11mths-I wasn't sure I'd even remember how to take the register! I went back on a Phased Return and that made it easier x
Helen, I meant say smells affected me too! I thought I could smell rotten fruit and kept making my daughter's check! And my bin smelt (to me!) like a chemo smell! xx