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
Morning Helen, good to hear from you that everything went ok with your chemo and you're managing ok.
Yes, I thought I wouldn't be able to cope with the cold cap, but once I got through the first 10mins it was managable. I had icicles on my head afterwards! I was recommended to use Simple conditioner. (Plus Simple products for showering etc)
I had a PICC line and it was fine and didn't catch. My hospital let my ED come in with me whilst it was being fitted-I'd got the impression from the literature given that she wouldn't be allowed, but they were fine about her staying. Might be worth checking if your husband can if you'd prefer someone with you. It didn't hurt, but it was nice to have my daughter chatting to me so that I wasn't thinking about it.
I just had hospital bandages covering my arm, but it might have been better to have bought a cover as I found the bandages were either a bit too looose or tight.
Definitely a good idea to buy the plastic sleeves for the shower-I got mine from Boots, it was about £5.
It was a bit of a pain to have to go the hospital to have it flushed every 7-10 days, but on the plus side I found it quite reassuring to see someone on the chemo unit regularly. (When I had a bad urine infection it was the chemo nurse who realised that both the onc and my GP had given me the wrong antibiotics, which was the reason I wasn't getting any better!)
I had some funny food cravings whilst I was on chemo-might have been a need to for carbs. After I'd had my PICC line flushed I often fancied a McDonalds-I hardly ate them prior to chemo and haven't had one since! The nurses said it was fine, I think the main thing was that I was eating. xx
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 (((
Hi , I had picc line put in on 3rd January prior to my first treatment. I requested it as have dreadful veins and didn't want the additional stress of them not being found a vein. It's ok, procedure wasn't as bad as I was expecting, it was a little uncomfortable for a few days but is well dressed and taped down and the the nurses supply a loose sleeve so it doesn't catch in anything. It's surprising what you get used to in all this. Definitely buy the limbo picc line waterproof cover to make showering so much easier it's well worth it. Some hospitals supply foc, mine did but only had super slim size. Hope that has helped you.
due to have second taxol this week , can anyone tell me how the side effects are do they get worse. Last week was ok and bearable but anxouis re this week,
Hi all, steroid blues is a definite... I always had a ciup!e of really teary emotional days once they had finished.... Famiky got to know when to tread carefully.... On the T part the steroid regime is different and i dont think i got so weepy. It helps to know its a nirmal thing
Sunnydaze and stuck at 14, I'm a teacher too! What ages do you teach? I job-share a Year 2 Class. I went back in September after having 11mths off! Returning was a bit of a shock and I was worn out by playtime the first week! My stamina is gradually increasing now, but I've cut down the hours I work xx
Hi all, just a quick thought about nail polish! I painted my nails with dark nail polish from teh start of Fec until the end of T... its supposed to help prevent damage from UV light I think. My chemo nurses told me to paint them with clear when I went to chemo just so they could have a check on them. It usually is the T part of chemo that affects the nails I think... mine have lots of ridges on them (you kind of get one each chemo I found) and then white bits at the top eventually became very dry and brittle. Only the last couple of weeks (3 months after finsihing chemo) the white ends have all snapped off quite low, not sore at all just very short nails, so hopefully now they will begin to grow again. Some ladies do lose nails towards the end of chemo (toes or fingers) but have all said they aren't sore once they are gone and there is always nail growing underneath. Nail polish will help to keep them in place and a bit more sturdy.
Have to say you all made me smile with your tales of all the things you took into chemo for your first one... I did exactly the same... laden down with things and only ended up using my water bottle and sucking a few sweets. Though I did take a friend or hubby to chat to. If you come to have T (docetaxol) its really useful to suck ice lollies whilst its being administered (its usually by a drip) as this stops it burning in your mouth.. I used to take a box of lollies and get through about 3 or 4 a session but the hopsital also had some. Might help with the FEC too if it makes you feel nauseous?
PS G - you didn't recently come off dexamethasone/decadron did you? I was in a pit of despair for a couple of days after that
I've become the most apathetic creature in existence. It's not a lack of physical energy (I can go for a 1 hour walk without difficulty), but all the oomph has been stripped out of me. I never used be be someone who could sit and stare blankly at nothing for an hour, I was always Go! Go! Go! Although I do keep just falling asleep on the lounge, so tiredness must be a part. I'm beginning to really wonder who/what I am.
I take my hat off to those of you who are working through this. I'm on 3 weeks sick leave at the moment and really debating what to do after that. I've been at the same workplace for 18 years and have accumulated a LOT of sick leave - so it wouldn't be a problem to take a break until I'm done, at least with the horrible AC part. Plenty of people have told me to just take sick leave and focus on getting better. But I'm not focusing on getting better, I'm focusing on a blank spot about 30cm in front of my face. At the same time I'm not sure I'd be any use at any kind of work except maybe licking envelopes - which is about as far from my normal job as you can get (I'm a project manager).
What is everyone else doing about work?
Thanks so much for all the information, it has been invaluable and to meet you all as well.
I hope the Nurses can tweak my meds slightly so I am not as sick the next time.
Kip, thanks for the info on the T. I will be getting Docetaxel.
I have had such a sore tummy, unfortunately it is normally very sensitive and I try to avoid tablets at the best of time but now I am like a walking chemist 😂😂😂😂. Needless to say it has certainly taken a beating so the Oncologist put me on a 2 week course of Omeprazole in the hope that it will calm down the stomach and acid reflux. Oh the joys of having chemo!!!
With regards to the bag packing for getting my first chemo.......it was hilarious. I also took everything but the kitchen sink. Pillow, blanket, sandwiches, iPad, phone, slippers the lot and I have to say I was so disappointed when I didn’t use one thing apart from the water bottle I took in. The nurses were in stitches. I was only in for an hour and back out again. I am known to carry quite a lot of extra luggage when I go places.
I have my wig appointment on Friday, I am taking my Mum and some friends just to lighten it up a bit. Let’s hope one catches my eye. I am in Scotland so I do get a wig on the NHS, no idea what they are like mind you.
OK, so I think I may have prattled on quite enough now and I should really go to sleep.
I hope you are all doing well (as well as can be expected). I do really appreciate the cyber chats albeit that I might not be on all the time.
Take care and lots of love xxxxx