Hi Manicmum, As much as you would miss going into school I think you may need to put your own health first, can you get any work from school that you could do at home?. I must admit mine was an easy decision and I'm enjoying being at home when feeling well as busy painting living room bit by bit, sorting out the garden etc.
With regards to T and reactions it does say that if it's going to happen it will be almost immediate to treatment being given so don't worry too much, I don't have any problems just the usual SE's, I'm starting to worry about Fec as I can't bear to be sick!!
Hope everyone ok, had busy morning so going for a siesta too! 🙂 x
Hi Manicmum, I'm impressed your still managing to work,I stopped when I was diagnosed because I do residential cleaning and I couldn't just leave work for appointments etc, also too strenuous, I can just about manage to flick a duster round my own house some days!!
I've still got 1 T and 3 FEC left which sounds a lot but is better if you say a third of the way through 🙂
Hopefulholly I agree better to get rid than block up again, I know which I prefer to suffer, I just make sure I up the water intake if too loose. It's funny friends ask how you are and when you tell them they cry "too much information", I keep telling them the trouble is you discuss everything in detail and get used to people looking at you and examining you that you don't hold back any info from friends and family, so if you don't want the full gory details don't ask the question!!
Hi ladies, I've not been on the site for a while as I've struggled since my 3rd FEC last Friday so have been catching up on the thread. I've felt like I hit a 'brick wall' over the past few days and thought I knew what fatigue was - I was wrong - I've experienced fatigue like never before. The thought of climbing the stairs just to go to the loo feels like an enormous task.
I see that the dreaded constipation continues to plague us. After days of constipation I've now gone the other way but I'm reluctant to take Loperamide as surely it's healthier to 'get rid'? (apologies for being graphic). Any suggestions?
Hi Sperry, definitely see about a line or central port. Makes the chemo so much easier, and saves your poor arms.
Glad to hear you had a lovely holiday, hope you feel refreshed x
Thanks Mazzi. Yep half way tomorrow! Saw oncologist yesterday who was really pleased with progress. Tumir has measuarable shuns which was great news (was 5.5cm across before). He seemed to think I was mad working while having chemo, as I'm a primary school teacher, but I would go mad being home alone all day with nothing yo do. Said I'd see how it went. Such a shame about the spa day. How many more sessions of chemo do you have? L x
Hi Sperry, glad to hear that you're coping ok with the paclitaxol - my second tomorrow and psyching myself up for it. Its a shame that they didn't give you a port or a hicc line to save your veins - will they not fit you with one as it would be much easier for you. Glad to hear that you managed to get away - France is lovely xxx
Hi Manicmum, hope your bloods went ok today, it must be awful to be jabbed everytime you go in, I do feel for you. On the positive side your nearly half way there :).
My son bought me a spa day Day for my birthday in June (before diagnosis) and I contacted them today to see if I could extend it as it runs out in December, but all they can do is extend for two weeks or if I pay £15 I can have it till February, now not sure if I should just go after chemo or flog it to a friend!!
As weather is supposed to be pants tomorrow I intend to spend it horizontal on the sofa and catch up with my Sky planner.
Have a good day all x
Hi Carole. Like you I had a break off this site. Glad you had your holiday. I love Italy. ONC didn't want to delay TX so I started then had a break. I remember you saying we are having same treatment. Chose not to have cold cap and hair ok until I had herceptin. Got about half now. Just having pax seems to lesson some SE against those who have something called FEC From what others are saying on forum.. ONC keeps telling me weekly is kinder to the body re SE so we'll see. Still have to go through tthe rigmarole each week as if doing 3 weekly, so my car in on autopilot to hospital.
concern now is how long hand veins will last as no discussion has taken place on Lines. I asked about pax chemo and getting 0.9% mix in saline but no idea if standard dose or not.
good luck with rest of your course.
Hi again. Been over a month since my first post but life has been hectic fighting with Social Services about care needed for my mum who has Altzhiemers and a sister who has found herself homeless. On my front doing not to bad.
Have now had 5/18 weekly tax and 2/18 3 weekly herceptin (due to being Her2positive). had a 2 week break as ONC said I was fit to travel so arranged annual travel insurance (at a cost) and went to France in our Motorhome for 16 nights. A good respite. Only problems to deal with were high 30's temps and moulting worse than a dog.
no major SE yet. Only noticeable tiredness. Still feeling well enough to work on reduced 3 days a week and some lighter duties.
have bloods taken on Mondays and levels although dropped are well with range. IV TX visits last between 2.45 and 6 hours depends on how much waiting time as where I am is a well used hospital and sometimes there is a wait for treatment area. I would make a good pin cushion.
Picked NHS wig up last Friday. That was a low point , but able to hang onto hair although thinned. Off to a wedding in a couple of weeks so that may be its first outing.
i need to have a recap on all your posts so will catch up later.
sending love to all x
I went out with my wig on a really windy day - live near the coast. I just warned my friends that they might have to retrieve it but it stayed in place amazingly well. I am also experimenting with caps and scarves but in all my life I have never "done" hats etc so like the rest of you is taking sometime to get used to - but the reality is we have to get on with it. Luckily i am off work until all of this is over so don't have to face work colleagues which actually makes it easier I think.
So I am really wishing for days with some sun and a slight breeze!!!
I love reading all your posts, I just feel so conscious in my wig or scarf. I'm always worried the wig will slip (or has and I didn't realise!).
Have bloods and oncologist today, ready for 3rd fec on Friday. No idea how bloods will go as my 'good' arm is so sore and swollen from blocked veins. It's so very painful, I can't pick my little one up with it or carry a shopping bag. Hopefully they can give me something to clear it, as a week of iboufen gel hasn't really one anything.
Hey ho, at least I'm still off for the school holidays for another couple of weeks
hope you're all ok xx
Hello lovelies, well I actually had a good sleep last night and woke at 6.30, feeling much better and sorted out my garden in the morning although had to have my usual afternoon siesta as may have overdone it a bit.
I wore my wig out for the first time at my hospital appointment yesterday, the nurse who did my first mammogram also did this one and remembered my face but not what my hair was like, when I said I was wearing a wig she was really surprised and asked to have a feel!.
I understand completely about the windy day scenario as I have stuck to hats with a visor so far and I do notice people doing a double take and realising there's no hair underneath and then either looking sympathetically at you or looking away embarrassed. I do also find now that the wig feels much more secure since I removed my hair as it had become so soft the wig was slipping backwards on it, I still have the feeling that it's moving up but when I check it hasn't, so I think it's just getting used to it. I was even feeling embarrassed about going into my back garden with a scarf on but now I don't care, ultimately though you must do whatever makes you feel comfortable and confident.
Night night all until tomorrow x
im now so used to having no hair..well baby fuzz now...i often go out forgetting my hats! Also at the football on Saturday i was sooo hot i took thd hat off..pretty terrifying amongst a football crowd but it was absolutely fine, except having my photo put on club Facebook page for the world to see. oh well, No hiding and no regrets my head is a symbolic medal of bravery and sure sign that the chemo is doing its job.
5th cycle done today....21 days till my last lot...whoop!
I haven't really adapted - I hate it as it makes me so hot but the hair I have left is a real fright so needs must. I try to make myself keepit on in the house to get used to the feel as it gave me headache initially. My freinds tell me it looks great and someone commented and said "well at least you haven't lost your hair" -so that all helps. However the need to wear it has reduced how much I go out but getting better. I talk to my reamining hair and dare it to come out in the shower but it's hanging on in there.
Hi Joyce11 - you seem to have adapted to wearing a wig so well; wish I felt so confident. I am still clinging on with my hair but it is thinning and flat and I would probably look better with my wig on. Each time I wash my hair it is seeing that day how much more is coming out and I try not to do anything with it during the day. Headstrong appointment on Friday so hopefully that will help towards giving me the confidence in getting used to wearing it and not having visions of it blowing off in the wind. Seaside resort so always windy.
I know what you mean about a wig flying through the air and I can see the funny side of it today. Not sure how the poor bloke who ran into the back of me will cope he will probably have nightmares - serves him right should have been more alert!!
Joyce11 - Sorry to hear about the car bump and hope the check-up at the GP shows you have come through with no problems. It did give me a chuckle to hear about the wig malfunction.
Thank you for the replies re Hickman line. I have now been booked for 21st August with chemo straight afterwards! It seems too much to have it all in one day but I guess they know what they are doing so chemo delayed 3 days which in the grand scheme of things is not long. Cellulitis slowly improving at last.
Mazzi - Sp pleased to hear the good news from the ultrasound. It makes it all worth it when you hear results like that. Hope you have had some success after the Dulcolax - we are all rooting for you.
Today I am off for an aromatherapy facial which I am so looking forward to although when I mentioned it to my BCN I was told cannot have neck or shoulder massage due to lymph glands/nodes? Pity that was the bit I was looking most forward to. Enjoy the sunny day and hope it is an enjoyable one.
Blimey sounds like everyone having a bit of a nightmare at the moment, hopefully I'm now over the worst of the constipation saga, could barely walk into hospital today but the lovely nurses at the breast care clinic were so sympathetic and kind and my wonderful Oncology nurse prescribed me dulcolax, which I had to take during today so may have a bit of a lively night ahead!
Also had ultrasound which showed that the aggressive lump has halved in size and the lymph nodes have reduced so worth putting up with the misery of chemo when you start seeing the results.
We're supposed to have a few sunny days now so hopefully everyone can enjoy x
Oh Joyce, I'm so sorry to hear that. I hope you're ok.
we had to put my mums greyhound down today 😔 everyone is very sad, we've had him 8 years. My eldest daughter is particularly upset. Horrid seeing him in pain and suffer.
hope everyone else is ok xx
oh heck Joyce...thats not good, hope the effects don't kick in too hard from shunt effects..usually takes 48hrs for whiplash sometimes. Must be few days for bumps as hubby noted we haddeng in passenger side sfter trip to Otley yesterday....buggars didnt own up though.
Has Herceptin today...all went fine, a bit bored for 6hrs but otherwise no problems. Also Consultant reduced dose of Tax for tomorrow due to me having had ' stage 2 ' side effects...anyone know what this means??
...mainly breathless, pain,dizzy,fast pulse. Also means i dont need GCSF injections with this lower dosage so hopefully will be easier. Glad on one hand, but anxious may be 'under treated' on the other...as neo adjuvant chemo, await op in October.
Good luck to anyone else having treatment tomorrow and this week, hope its kind to you but hammers the b@$£☆d cancer.
Take care all,xx
Today I feel like life is a bit of a **bleep**. Someone hit my car from behind just because I decied to go out to make me feel better!! Car in garage, waiting for replacement - hit me hard enough to make my wig fly off - If I could laugh about it it must have looked quite comical really. Will have to get to GP tomorrow to get myself checked out as the force might have given me a problem. Still at least it's not a chemo week. Sorry had to get that off my chest.
Hi Jky03 - had my first Herceptin injection last Thursday and have been ok - think aching is the chemo rather than the herceptin - bit of bruising round injection site but that's all - herceptin is only reason I'm having chemo as originally told only rads then after WLE told as well as ER+ pr+ was also her2+. Hope your team won yesterday - arsenal on today so will prob be manic in our house as OH and one of my daughters are massive fans. They are not going today so will prob watch on TV xxx
got my first Herceptin injection tomorrow and 2nd Docetaxel on Tuesday (5th cycle). Jyst wondering if annyone else has had Herceptin yet and any issues with it? . Dreading the Tax and filgastrim as not a happy time last lot....hate the day before treatment as just seems like manic cleaning sessions/diversion tactics and delaying the inevitable.
Re PICC lines...in my experience only trained nurses are allowed to access invasive devices and some havent had much experience with central lines etc, so you may come across folk who may be reluctant to use them. Bloods can be taken from them but if inexperienced nurses are doing it they may well opt for peripheral access instead.
Hope those having treatment upcoming have had a good weekend. We watched our footy team Notts County at Stevenage...we're mahoosive footy fans and hopefully the upcoming games will be a nice diversion for me....as long as we win that is!!
Hi All, I've woken up this morning feeling like someone has beaten me up during the night - first chemo last Thursday and I'm having weekly taxol so dreading next one if stIll feeling like this. Port still a bit sore but easing up a bit and glad I had it done as think weekly sessions would be too much for my veins. Ros hope your cellulitis is under control and it's good that they are giving you a line - like Manicmum said think it's a line rather than under the skin like the port - I had local sedation and didn't remember a thing although was awake apparently. Movacol is also really good for constipation. I have some as my 16 year old daughter is a sufferer, although she's improved over the years. I think you can take quite a few sachets a day and GP advised two at once in whatever you like to drink, orange juice, etc. She found this better than laxido which is the cheaper version, but everyone is different - you should be able to get this free on prescription. Hope everyone has a good day - sun is shining so might have a warm bath and go for a nice walk with he dog xxx
Hi everyone I have just joined today despite having cycle 1 fec75/tax75 on July 14th which wasn't too bad I used a cold cap which was ok better than I had read it would be. Managed to keep most of my hair until it has started to thin but by this cycle2 on Friday 8th I'd say id lost a fair bit on top and around edges but still can cover the light areas! Will keep going with it ik think despite being told my drugs induce hair loss by the nurse applying it!
Apart from constipation on first cycle all good so far hoping this continues into next cycle on the 28th aug I'll be half way!
Anyone else used the cold cap?
Hi All, thanks for advice, got hold of some laxido last night took it at 11pm and 4am but still no luck, will try lots of water and maybe prune juice today, I've got mammogram tomorrow at breast care clinic at 9am so will pop in to Macmillan and see if they can give me something. I stopped tramadol Thursday night and not on anti emetics so must just be the chemo messing me up, hopefully on next session I will get the meds right and fly through it!!
With regards to PICC lines etc if you've had one fitted it seems a bit mad not to use it, when I was in A&E they were a bit nervous about it getting infected and I know the nurse dealing with me was from the Oncology ward so maybe health care assistants aren't allowed to use them. I think hopefully we are entitled to make a bit of a fuss seeing what we're going through 🙂 Have a good day all xx
Manicmum, I didn't realise you had a port or that it couldn't be used to take bloods. That's a bummer. At clinic, the health assistant wanted to take blood through my hand and when I refused she said she'd have to get a nurse to do the picc. I did feel as though I was making a fuss but after having the picc fitted I didn't want to end up like a pin cushion with painful and bruised arm, hand and wrist. I hope things settle down for you.
Mazz, my GP prescribed glycerine suppositories when I'd allowed myself to get too constipated, they had immediate effect and were a lifesaver. I now use movicol twice daily whilst taking the anti emetics as my onc said they were the cause of constipation and this usually does the trick. Good luck, I hope you find something that suits you.
i think it's similar but the line is outside the body? My port is under the skin on my chest.
good luck with having it done in time, so yo don't have to delay the next round of chemo.
Hopefully everyone can enjoy the nice weather x
Morning Mazzi -Try Apple juice and prunes. I think you can buy Lactulose over the counter too. Hope you have success.
Thanks JKY03 for the advice on the Ibuprofen gel which did help me get a couple of nights good sleep. I have ended up with cellulitis in my arm and hand so now on antibiotics and have been told I need a Hickman line for the rest of my chemo. Is this the same as Port and Picc that has been mentioned? I was surprised at the cellulitis and so didn't ask any questions. Does it hurt when inserted, can you shower still and can you feel it under your skin? So I am now listed for this which may delay my 3rd FEC - so not fair.
Welcome back Nico - hope you had a lovely birthday. I never eat pork pies but this has now become a regular as well and not just the pastry. One minute hubby sees it, next gone!
Welcome back Carolec - good idea having a lovely Italian holiday before the chemo starts. I have had two FEC using the cold cap - still have my hair and only I notice it thinning. I have had it cut very short tho.
Beautiful day today so off to the Lake District. Wishing you all a lovely day. xx
Hi Mazzi, nightmare :-(. I'm not sure about quick but if you can get some movicol/laxido, it holds liquid in the bowel and really helps. Prunes and apricots are good too. Thinking of you as I had a rotten time last round - Senna and prunes weren't enough and I needed the laxido. Apparently lactulose is good too. It might be worth phoning NHS24 as you will be flagged up as urgent. Take care, xx
Hi All,after having 2nd T does anyone have any fast suggestions for constipation?, have been taking senna tablets last three nights but nothing happening, I'm starting to get that horrible sick feeling 😞
Thanks hopefulholly I have had a port fitted. Only issue is no one but the chemo people will use it!
I think I have four seperate blocked veins now, so painful but nothing I am really do about it.
Chemo is difinately better through the port.
Take care xx
Thank you so much for all of your replies and tips and whilst I'm sorry some of you are experiencing headaches also, it's good to know it isn't just me. I am drinking about 3-4 pints of water a day (well, reduced sugar Ribena) so staying hydrated (and the very occasional wine!) but I will try some of your suggestions, thank you.
I had my chemo through my PICC line today and it was so much easier and quicker. Manicmum, if you're having so much trouble with your veins might you consider asking about having a PICC line fitted? Tbh, I was afraid at the thought of it but it's been fine. After my last chemo which took 3 hrs and left me with a painful hand and arm which is still tender after 3 wks, I'm so glad I did.
Best wishes to everyone x
Just prior to my hair falling out...in 3rd week after FEC 1 it all came out in 24hrs, i had awful headache and scalp tingling. Having warm bath and gently massaging my head helped, drink plenty of water and use pain relief if needed..take temp first tho. I also shaved my head once majority had fallen out as i looked ill with a few strands here and there...i took care not to damage scalp tho as you wouldnt want any infection from sore scalp or unclean shavers..
Luckily it doesnt last long and after hair had come out it was fine....i didnt use cold cap so cant comment on that aspect, as i just went gracefully bald and use hats and scarves. I found it quite liberating and at times now have no qualms about going out without headwear if its too warm....use sunscreen on your heads tho ladies.
Ive now got a head full of fuzz as my hair is starting to grow back...i have 5th cycle on Tues and use coconut oil on my scalp...it seems to encourage it to grow..its like manure for hair!!
Hi Hopeful Holly, I had awful headaches for the first week after round one, could just about cope during the day but as soon as my head went on the pillow, it just got worse and worse and ?I couldn't sleep. Tried after advice paracetamol, ibuprofen, even both together but they didn't really help. Religiously taking temp before taking them in case they were masking an infection. In the end the gp gave me 20mg cocodamol, and I took one at bedtime and it really helped - a decent sleep and woke up almost pain free. This round is a bit better. The things that help me are heat wraps/ wheaties over my shoulders, keeping my neck and back moving with exercise and consciously breathing into my head and neck and relaxing. I think for me the chemo starts the pain but then I guard the area and that just compounds it all. Getting out for a walk is good too.
I hope you can find what will work for you as it is just so debilitating, xxxx
Hi hopeful holly. I had that feeling before a load of hair came out. I have about 30% of my hair left so I too don't really want to shave it, but if it happens again I might as it was so uncomfortable. Like I'd had my hair up too tight for too long.
My 3rd fec is a week today, then three lots of T
i have managed to get three block veins in my left arm through too many cannulas (they think that is the cause), very painful but nothing to worry about apparently.
Hope we everyone is well xx
I have had some headaches but find that drinking lots of water seems to help - so even if I don't really feel thirsty I am drinking water (and wine but suspect the water is more helpful). My scalp was really sore just prior to and during the time the hair was falling out but like you I still have some hair and reluctant to shave off.My third FEC is in a couple of weeks so a similar stage to you. Sorry i can't offer anymore help.
Hi ladies, I've been unable to comment on posts in the forum until today and since the website update 're: problems with password log in!
I'm just wondering if anyone is suffering from headaches due to the chemo as I get them daily? I mentioned them to my onc who doesn't think the chemo is causing them but I didn't have them before and I'm sure they're not due to stress.
I also have a very painful scalp, which is different to the headaches - it even hurts to touch my hair. I know someone who said the painful scalp eased once she'd had her head shaved and wondering if anyone else has experience of this? I've lost a lot of hair but still have enough cover so reluctant to shave it yet but would consider shaving it if it would ease the pain. I'm having my 3rd session of FEC tomorrow then 3 sessions of Taxotere.
Thanks in anticipation and best wishes to everyone.
Hi All, finally joined you today after originally posting early July as that was when my chemo was due to start but they delayed it as I had a holiday booked in Italy for my nieces wedding. Came back from Italy late Sunday/Monday and then went today for port to be fitted then on to chemo unit for first chemo. I'm so glad I'm over the first one. Had cold cap which was not good for first 10 mins and then it was ok. When they took it off I was half expecting a friar tuck haircut but so far so good although really early days and I'm expecting the worse and have wig ready. I need to lose a little bit of weight and thought chemo would do this for me but I'm absolutely starving and eating anything savoury - like some of you I'm usually a sweet toothed person but have craving for savoury food. The port site is really sore but I've been told that will improve over next week and I feel tired - might be sedative and piriton but apart from that ok at the mo - think this is the calm before the storm! Thinking of you all and especially those that are suffering SEs - I expect to be joining you soon, Carole xxx
Morning all.....had bad night too..not with me though!!.
Bought my daughter a Groupon meal deal at a local bistro restaurant..Steak meal with Prosecco...which she and her boyfriend had last night. At midnight complete explosion for poor lad...he'd had Scallops to start and unfortunately ended up with food poisoning!! Not nice for him when staying in someone elses house too, really felt sorry for him.
Me and hubby bought same deal and meant to be going tonight as a 'good week' treat....im cancelling tho as can't take the chance, what a shame.
Taking nephews to air museum todayvthen to an American diner for tea...dropping back at home as the sugar kicks in later....lol Theyre 4 and 9 so gonna have my hands full.
Hope you get rest today, feet up and box sets at the ready.
ps well done Mazzi on injs....ive given thousands to others and proper dithered with mine at first.
Hi Mazzi, hope you keep feeling better,x
ive been given domperidone on top of the ondansetron this time for nausea but not sure if it's helping much so far. Hoping to sleep but got a Jane Green audiobook if I can't 😏.
Good night all,x