My oncology nurse really emphasised the need to report SEs, think I have the message, so if that happens will need to override the nurse in me that thinks it will be fine!
Sorry to hear you had a rough couple of days, but thanks for your honesty.I am going into chemo with a suck it and see attitude.
I am definitely taking your advice about not suffering side effects without informing the team looking after you. My oncology nurse really made me feel it's okay to just pick up the phone and clarify things with them. She also said, if you do feel unwell, check your temperature as that is one of the questions they will always ask/
Hope you have a good sleep tonight.
Hi Geordie doon sooth
Glad to hear all is okay with you so far.
I did quite a bit of research too and am happy to have a PICC line. I could have had a port, but this wasn't for me. I managed to wash with lots of dressings post op, so think I can cope with the PICC.
Good luck with the cooling cap and let us know how you get on with that.
Think I am just going to practice drawing eyebrows on, but my lovely nurse told me that not everyone loses their eyebrows, so I am living in hope.
All the best with your PICC. Mine is going in on Monday, with first chemotherapy on Wednesday. I am also not having the cold cap, just not the right thing for me. Oddly enought always wondered how I would look bald, so won't have to wonder for too long! Hope you have a good time with your kids tomorrow/
I am also starting chemo on 6th September. My PICC line is being put in on Monday. I'm not too worried about the procedure as think it is fairly straightforward. I also live alone, but think there is a few of us, so hopefully we will get support for us on our own and those who live with other people. I've learnt that all help is to be welcomed.
Can I also say, sorry if I don't reply to everyone who posts on here. I do read all the posts, but it's hard to keep on top of replies, but my thoughts are with everyone who is going through chemo or those who post about their previous experiences, all appreciated.
Don't apologise at all for your essay, you've provided some good information.
I echo what Jacqui has said.... do not suffer there really is no need, if something doesn't work for you they have plenty more anti side effect meds up their sleeve.
I had an awful allergic reaction to one of the antiemetics, they gave me something else to try which did nothing for me yet other girls in my group raved about it. Eventually the worked out the best cocktail for me and the 2nd cycle was much better x
Hi Cathysid - and everyone who's joined since Wednesday. It feels like ages since I was last on.It's been lovely reading all these posts in one go. Sorry to those who have found themselves on here, but welcome too and let's hope our treatment is smooth and successful!
I've had a rough couple of days after my first FEC on Wednesday but have come through the other side now - I hope! I managed to crawl to the bathroom to avoid a sick bucket in my bedroom sanctuary! My sickness med's just didn't cover it so I needed a brief stay in the day unit for some IV fluids and stronger anti-sickness yesterday, and they found a water infection too, so all sorted! Becuase you have no idea what to expect, sickness and nausea, I assumed, was just something I had to struggle on with, and tried to until it was unbareable. Needless to say the BCN was appalled that I'd not rang earlier to sort a shift in the med's - now I know that most side effects can be managed.
Somebody mentioned earlier about the first cycle being scary because of the unkbnown - so true. I found that loss of control feelingso scary & overwhemlimng - bit like childbirth (but without the after fun!). I thought all the genning up I'd done before hand would prepare me - and whilst it did help inform, it's true to say that no chemo experiences are necessarily the same!
For those talking about PICC's - I too am needle phobic so it was a must for me! It's not yielding bloods but everything is swimming through fine. Apparantly this can happen, but they're not worried - so I'm not. They say they are happy to do another chest x-ray to check next time, but used an analogy - something about a little ' net curtian' can sometimes gather at the end of the line in the vein to prevent blood getting up but still letting fluids in....grossing me out even talking about it! Anyway, I'm hopeful it will behave next time! And anyway I am so proud to have handled the GSFC (?) stomach injections daily since - a doddle and for a needle phobe, that it amazing!
Only advice I have - don't just suffer any side effects that you don't feel that you are coping with - just ring/ talk to your unit/ BCN immediately and don't think you should just battle through. I just assumed that feeling bloody awful was inevitable - it seems that most things CAN be managed well. I was stupid (with hindsight) thinking it was part of the course & I had to put up and shut up!
Good luck to those going through the first cycle - and the older hands! Can't wait to be one of you!
I'm an eighth of the way through!
Hugs galore to you all -
Thank you all for your lovely supportive messages 🙂 Day 3 now and still doing fine - just hoping it stays this way when I come off the steroids on Monday!
For those of you asking about PICCs, I recommend having a PICC line right from the start. I did a lot of research before getting mine and decided it was a better option for me rather than attempting to get in through veins every time and risk collapse etc. You may find that your medical team recommend you have this or a port anyway as some regimes are safer this way. I didn't fancy more surgery and am not bothered about swimming during chemo (infection risk!) so PICC was better. The procedure was nowhere near as bad as I thought it might be. The only minor pain was the local anaesthetic injection and the rest was no big deal. And once it's in there's no more injections needed - everything just screws on and off the tube. You need to keep it covered up but the nurses bandage it all up and you can then buy a PICC line cover for when you're out and about and a Limbo cover for when you shower (you cannot get it wet). I used Livebetterwith to buy mine.
I have also also gone for a cooling cap. Can't say if it's working or not yet as it's only day 2 but it's only slightly uncomfortable and you get used to it after the first 15 minutes. My oncologist recommended I try it as even if it saves 50% of my hair the regrowth will be much easier. It's worth getting some pure conditioner, a water spray bottle and a wide tooth comb to prepare your hair, an Alice band to protect your forehead and ears and also cut your hair to above shoulder length before hand.
If you're worried about hair loss, I'd also recommend having your eyebrows done with semi permanent makeup (you need permission from your oncologist) as soon as possible before starting chemo. It is expensive but I am glad I did this as will look more like me when my eyebrow hair goes!
Hi unjoya and welcome to the thread.
Please don't worry........ It's probably not as bad as you think.
Come on here as much as you like and we will try and help where possible. As I say to all ladies, prepare for the first week so that you've got everything at hand that you might possibly need. Then you can sit back and rest when you need to.
Mine coming off today, day 3 2nd cycle - glad it is as I'm shedding all over the place! I would have been able to have an appointment day 3 I think, cos I had the steroids keeping me up, it was 4-9 that were my rubbish days. Maybe you can cancel on the day if you don't feel up to it? Xx
Hi Jo, I agree with Sue, I too was on FEC & definitely recommend you rearrange your appointment for a week later. My hair had to be shaved off about day 19 as it was coming out in clumps so as Sue says you have time x
And yes yes do something fun this weekend 😘
And welcome Geordie to the thread.
Jo...you may want to leave the wig fitting for a week, if that's possible. I found that day 3 was probably my worse day, in terms of fatigue really. Also, hair loss starts about week 3, so you have plenty of time.
It's a good idea to get a few sleep caps, because it helps catch the hair at night and keeps your head warm.
Thanks all for nail varnish advice- I will use the evonail strengthener for the FEC bit and then dark polish for the T.
That is really tough Geordie doon sooth having this going on just after your wedding.
My PICC line goes in on Monday too Rhona and I just heard yesterday that I am also having chemo starting on Wednesday at a private place (NHS funded). There won't be any doctors there but the nurse reassures me that they can deal with any adverse reactions.
I'm due to have wig fitting on Friday (just 2 days after my first FEC chemo)- can anyone advise whether I should rearrange to a later date please?
I've also requested a look good feel better course, but again need to wait for that as full. Hoping I don't look too rough in the meantime! I bought a second hand beanie type hat from the Macmillan shop but otherwise feel a bit unprepared head wise. I'm not cold capping on the advice of my oncologist (because it takes much longer and they are so busy). I am enjoying my new short hair though- while it lasts.
Lovely sunny day out there so feeling a bit of pressure to do something really fun on my last weekend pre chemo!
Hi Geordie doon sooth
Congratulations on your marriage and sorry you are having to deal with BC at this time
It is good, however to hear from someone starting the same regime as me. I am starting FEC T next week. You definitely made me feel more reassured and I am keeping an open mind about chemo.
Sounds like you are coping really well despite the complications of a blood clot. I'm having my PICC line in on Monday ahead of my first chemo on Wednesday.
Hope you have a good night's sleep.
supplements - don't take anything without checking with your team first
nail varnish - my oncologist told me the theory is that docetaxel (t bit of fec-t) is believed to react with ultraviolet light in your nail bed so any solid colour will work. I took this one step further, I never left the house in daylight hours without wearing gloves, even when nipping out to the dustbin I put on marigolds. I started T in the second week of November so luckily I didn't look a twit wearing gloves 😂
they became a bit sore like they were bruised but I didn't lose any, could have been fluke or the gloves & varnish did their thing.
Foods - I was advised to stick to a diet similar to a pregnancy one, i.e. No pate, rare steak, soft cheese, runny eggs, unpasteurised yoghurts etc, it's because your immune system is gonna take a bashing so best to avoid potential risks.
weight - I gained almost 3 stone 🙈, probably one of the worst in my group, (I lost it pretty quickly once I came off the steroids) most ladies in my group gained weight - there was only one who lost a lot of weight. When on chemo it is better to gain than to lose, they don't like it if you lose weight.
Welcome to the thread.
Apologies as can't comment about cold cap or Picc line as its not something I had, but hopefully someone will come along shortly. Also, the chemo nurses will go through everything with you.
I had my first chemo session yesterday so hope I can qualify as a September starter. I was diagnosed in June with IDC which has since turned out to be Grade 3, 5cm and was in 10/23 nodes. Had a single mastectomy and full axillary clearance in July and started the FEC part of my FEC-T regime yesterday - am having 3 FEC before 3 T. I'm also on Zoladex to hopefully help with fertility later on as am 38 years old and jut got married 7 weeks ago.
In answer to to the question about nail polish, I asked my onc if this was necessary and she said that it is a good idea before Taxotere as there is some evidence to suggest it is light sensitive so is less likely to damage your nails if the light can't get to the bed - hence the darker polish the better. This isn't necessary for FEC.
With regards to supplements, I've been advised to take simple Vitamin D only due to the Zoladex but steer clear of everything else unless your oncologist has approved. Gentle creams and products also recommended due to skin sensitivity from chemo - particularly PH neutral (especially with hair products if you're cold capping like me).
My first chemo was much better than I thought it would be although it was delayed to the afternoon as I had to have scans before starting with a suspected them confirmed blood clot in my chest from my PICC line which was fitted last week. Apparently this is rare so early on but did not effect my treatment. It does however mean that I now have to self inject an anti-coagulant every day for he next 6 months. I'm not worried about this though as did a round of IVF after diagnosis so am used to injecting now and it's easier than one might think.
Im feeling good today and have experienced very few side effects so far. Let's hope it stays this way! Just want to reassure those not started yet that it might not be as bad as our minds let us think it might be. I hope all the ladies starting today are doing well too! It's nice to meet you all and I hope we can all become friends and support each other through this all xx
I had a tumour removed and three lymph nodes, at result day it was found that cancer was in one of the nodes so two weeks later I had all the nodes removed and they were all found to be clear. So it was very good news for me. However, I still have to have chemotherapy and radio therapy. I see the chemo nurses next week so will know more about the regime.
I have been reading so much about what will and could be coming up for me. Can anyone offer any advise on the cooling cap and having a picc line (I am needle phobic). Thank you.
All the best for your full chemo today. I was awake at 4am and now up again to meet the oncology nurse this morning. Just filling myself with coffee to wake up!
I'm 55 years old, just grown all the bleach out of my hair, finally got it back to my own colour and will be losing it all soon as start chemo next week, but it'll come back.
I agree with the fruit, veg and fish and have been doing this on weight watchers. Will try to stay away from the cake. I'm going to have a look at the website you mentioned thanks.
I don't have children to think about, but will still be accepting help that is offered, which I'm not so good at doing. I am hoping to do some food for the freezer before next week.
I'm sure someone who has had chemo may be able to advise re nail polish. My oncologist did say they ask people to paint their nails a dark colour. I am having FEC T and if I recall correctly, it was mainly when having the T. I was just planning to wear it all through chemo as feel better with painted nails anyway.
I am also a bit concerned re weight gain, having just lost 16 pounds, just going to try to be as sensible as possible, preparing myself that I may gain some weight and will deal with it afterwards.
I was going to avoid supplements, but checking with my nurse in the morning. I had heard of avoiding grapefruit, but not seville oranges. xx
Thank you Sue and Nikki for that advice, We've had a lot of support from friends with kids and food post mastectomy so didn't want to overburden people with additional childcare duties if unnecessary, but sounds like it may be wise to prepare for the worst. My husband is around but finds the kids hard work on a normal day...... Unfortunately we are hosting a kids birthday party at home in middle of month. Would be a shame if I have to retreat upstairs, but hope people will understand.
And thanks for advice re parabens- will save my toiletries for the post chemo phase after Christmas. I was advised not to take any supplements. And no grapefruit or Seville oranges.
Michelle, I hope all goes well for you tomorrow (or rather today- I'm not sleeping well). That must be tough doing this as a single parent- I do hope you have family and friends to help out? I would have had chemo up front but at that point the drs didn't realise my cancer was so big or aggressive. At least you will know whether the chemo is working if tumour shrinks.
My other query for the old timers is around black nail varnish- is there any evidence that it works please? There appears to be a lot of conflicting views, I have bought something called Evonail which is a nail strengthener but wondered if there is value on painting nails on top?
I'm also a bit concerned about the steroid induced weight gain- being fat, bald and one boobed doesn't feel like a fun prospect but guess it is a minor issue in the scale of things! Better to be alive.
I think you're right....TC seemed to be slightly better re. side effects. I certainly didn't have any sickness, but the fatigue was really hard. I didn't leave the house for a week! But then I struggle with fatigue anyway, so that is partly me. Also, my kids are teenagers, so not quite as demanding as little ones.
Hi & welcome Jo,
with regards to your question re child care.
I'm going to disagree slightly with Sue as different chemo regimes have different side effects, (check out macmillans a-z of chemo for detailed info on se's) I notice say you will have FEC, I believe Sue was on TC.
I had FEC, it made me feel very nauseous within 2 hrs of infusion & I felt like that for 10 days - I was never actually sick but felt rough.....think hangover from hell 🤢
You're going to get bored of hearing this but everybody reacts differently, im afraid you're not going to know how it's going to affect you until your first dose, the following doses will roughly follow a similar pattern so it's a good idea to keep a diary, you'll thank yourself on the next cycle 😊
So in my case there is no way I could have coped looking after young children during those first 10 days of FEC. T has a completely different set of side effects but wayhay no nausea 🤗
A lady in my group (was on a different regime) went to work throughout chemo! Out of 40 of us she was the only one I hasten to add 😳
Hi Jo, my BC nurse at my pre assessment recommended not using shower gels or make up with any parabans in. Apparently the skin becomes very sensitive and can absorb these easily. There is a pictorial information sheet on here telling you about the various 'nasties' to stay away from. As it's sunny at the mo you should invest in a factor 50 sun cream as your skin becomes extremely sensitive to the sun. I went on a Look Good Feel Better course at my local Maggies and got some wonderful safe high end products to take home with me. Why not save all your lovely gifts for treats afterwards if you aren't sure?
Hi Chasndave, if you've got your info from your Onco then you'll be somewhat prepared for side effects such as nausea and constipation. I had Ginger biccies by the bed, and mint imperials . I bought two types of herbal tea to combat the nausea but didnt work that well for me. My hubby found a wonderful soup recipe with ginger in and I drank/ ate gallons of that. Great when the appetite went. My pain meds caused constipation, so although I bought a stool softener from Boots I managed on bags of Pontefract cakes. Loved those! My taste buds went after the first cycle, and are still a bit iffy on rads. I got in some dilutable drinks like lime juice, elder flower cordial and fresh lemonade. I could tolerate sharp and fragrant, but not sweet. Funny that we are all so different. Pineapple is good for you, very refreshing if you put it in the fridge. I got little tins of fruit for energy, but used a lot of soft fresh fruit for breakfast and in smoothies. Frozen blueberries and strawberries are also ace for that. I added oats and natural yogurt to bulk up the nutrients. Your skin will probably take a hammering, so you will need to stock up on paraban free stuff. My chemo nurse gave me Aveeno moisturiser, and a good mouthwash . I got aloe Vera toothpaste and Manuka honey 15+ for my dental hygiene. I managed to get a hygienist appointment sorted before I started. I also bought Defiant nail oil and had regular manicures as my treatment could have softened my nails a lot. Even though I've finished chemo I still stick with my rainbow diet of fruit and veg and seem to do very well on it. Sending hugs for a safe journey. 🍀 X
Just wanted to welcome you to the thread. Hope you can all help and support each other through this challenging time. I had chemo last year, so can share my experiences if that's helpful.
Like I said previously, try and organise childcare for that first week and then hopefully after that you will be fine. Just try to minimize contact with other children and get yours to wash their hands as soon as they come in! I've got older kids at home, but still got out the antibacterial hand gel as soon as they walked through the door. I got through the whole process without any infections.
Best of luck.
Hi Jo and welcome to the thread.
The hardest days are probably 2 to 7 so that may be the time to get help with the children. I made sure that I was prepared for that week, eg, food shopping, washing etc so that I needed to do very little. You may feel very tired and nauseous. But the rest of the time you should feel fine. Also, the biggest worry is getting an infection. Very difficult I know with children! But just be as hygienic as possible and don't arrange any play dates!
Not sure about non perfumed products. I didn't change anything during chemo, but i did need to have certain products for rads. I'm sure there will be other ladies along soon to advise on that one.
Hope this helps.
I'm a September starter too so would be great to join this group. I'm having my PICC line in on Monday but don't have an actual start date for my FEC-T as the chemo unit is very full - there's a lot of cancer around in Bristol at the moment! I'm feeling a bit apprehensive and still a bit sore post mastectomy, but also keen to start and blast this thing asap (I have grade 3, stage 3 : ER+ PR+ HER2- 1 lymph node multicentric disease with largest tumour being 70mm).
My youngest child starts school next week- very gradually. Does anyone have any idea whether I'm likely need to get in extra help with kids? Looking at past threads, people seem to have quite different experiences.
Also, I have been given a lot of lovely gifts included scented washes and creams- any idea why non perfumed toiletries are recommended please- do they just not smell great or does your skin get very sensitive?
Thank you, Jo x
No I didn't work at all during treatment. I also work term times, not in a school, but with children. I have a very physical job and was unsure how reliable I would be, so it was better to just stay off. If you work with children, then its not advisable anyway due to the risk of infection. And I would say if you can take the time off, then do so. The first week you may not want to do much at all and then the rest of the time your body needs time to build up the immune system, ready for the next cycle. Don't feel bad. Do what's right for you.
TC chemo is simply based on your type of BC. I was told that for me, it had better results than FEC. I didn't have high blood pressure ( although I do now, due to letrozole!) but that wasn't a factor.
I see there is another lady on here with similar chemo. Yes fatigue will be challenging! and I did have bouts of diarrhea, but that can be treated.
Hope this helps xx
Thanks Sue, ive stocked up on dvds and just want to get on with it now. Did you work at all during chemo? I work term time (not in a school) and am due back at work Monday (had my mastectomy the first week of the 6 week holiday). I thought id go back until I start chemo but am not keen on working during chemo - i have no support at home and look after my daughter and also check on my 89 year old mum every day. Dont need the added pressure of work as well but feel bad saying i dont want to go back until treatment finishes. I suppose I'll have to wait and see.
i feel much better knowing there is someone who has gone through the same regime and can compare with. Thank you xx
i wonder if TC is because of high blood pressure?
Thanks Jacqui - you sound like you have done brilliantly today - I hope you have a comfortable night. Your wig sounds fab - I tried on an 80s type one and looked like a newsreader! I heard today that the prescription people will allow me a curly one 'off list' so that will save a few pennies! Am trying to fill my week with meaningful activity and pretending not to be fed up with the delay! Well done again on the first one under your belt x