Good evening everyone,
Moijan - it wasn't me at your hospital, I'm afraid! I haven't worn my wig outside the house yet.
Bluelily - our treatment is the same! I have had problems this week with finding good veins. The phlebotomist had to use both arms yesterday, and I had cannulae inserted in three different places today for chemo. I am hoping to avoid having a PICC line, but we'll see how I get on next week.
I had Herceptin today too, so I think I've been jabbed by enough needles for this week!
Does anyone have any tips for keeping veins in good condition through chemo?
Love to all,
Hi all. I haven't been on for a while so hope everyone is ok. I have had to have a stay in hospital over Easter and have only just got back home. Without wanting to frighten anyone it turned out that I had a series of mini strokes on 15th April so my husband rushed me down to A&E where they carried out scans and tests to see what had happened. Whilst I don't want to alarm people because I think this is not common and I have a family history of stroke etc it also reinforced how important it is to report any signs and symptoms that worry you rather than wait to see if they go away. I have had no lasting damage thankfully but my oncologist is deciding now how best to proceed. Should they bring the op forward or carry on with the chemo. The chemo is working well and shrinking the tumour (down from 40mm across to 17mm) so I will have to leave it in the hands of the experts. I should be having my third lot of FEC next Tuesday but am still waiting to hear whether they will let me go ahead. Take care everyone and stay safe xx
Hi, had my last chemo/FEC last Thursday - all 6 cycles done!!
The fog is still with me for now and I certainly feel more tired now than I have since I started in January.
At least once these SEs are gone my body will start to recover.
Each cycle has been slightly different and from cycle 4 onwards the SEs were more obvious.
Keeping a chemo diary has helped me compare from one to the other .
Sore mouth and awful taste seem to be on similar days of the cycle.
Happy days xx
How's everyone doing? I'm just out of the five days of fog and weakness after FEC, hope to go out for a walk in the sunshine later.
Anyone else find their side effects changing with each round? This time I really went off sparkiling water, so am now drinking sugar free lemonade by the pint - it's all I can tolerate! And the veins in my lower arm are sore from the injections - just hope they last another 4 rounds 😕
It's good to read about how you are all getting on. I am now halfway through my course of Paclitaxel - 6 down, 6 to go! The side effects haven't been too bad this week, but the fatigue, broken sleep, lack of tastebuds and hair loss are all ongoing. I will probably get what is left of my hair clippered off next week and start wearing scarves or hats. I bought a cheap pink wig for fun and I love to wear it - cheers me up! I have only worn it at home though.
Love to all,
Hi everyone, I had my second round of EC yesterday, have been trying the cold cap, had long hair but got it caut short, my hair only started coming out a few days ago before round 2, the nurse said though to try and persevere with cold cap, as the shedding can sometimes stop suddenly for a while, wishful thinking! I have my last EC in 3 weeks, then the dreaded Docetaxal 3 rounds, I've heard it's quite harsh, painful joints, eyebrows and eye lashes can go, on a plus note though, was told the hair can sometimes start to grow back!😊 I suppose the positive thing through all this, it's a small price to pay to keep the cancer at bay.😊Xx
I'm taking steroids right now (had chemo on Wendesday), I take at 8am and 12 noon and have had no problems with sleeping at all. In fact for the fice days after chemo (I'm on FEC-T) I sleep really well and actually struggle to stay awake for more than two hours at a time!
Your chemo nurse will explain all the medications they give you - I'm on seven different medications at the moment to manage side effects, so I took a notebook with me to write it all down as nurse dispensed them to me.
Good luck! x
Hi I am due to start chemo in the next week or so. Have been reading March and April threads. Remembered seeing something re not sleeping and not to have steroids after 2pm otherwise you will be awake at night. Said to take 8am and 12pm not sure how that works as new to this.
I am new and like to join you all , I was diagnosed in Feb and am having neoadjuvant chemo started on 20 March so so far have had two FEC have one more FEC then the three Tax .
I also used the Cold cap but most of my hair gone now I only think I have around 20% left which I dont think I mentally prepared for , it mostly fell out at about day 17 but the rest a few days after the second round , Its looks so awful I too dont know if its worth carrying on but theey advised me to try as it will come back quicker , I had lots of thick hair too so now have to get a wig sorted as I feel so self conscious wearing hats and scarves .
I felt fine the first time but have had a lot more nausea after round 2 and mouth ulcers too , I guess its cumulative ,
Its good to chat with others going through the same thing at the same time
Hi thank you for this info ad I did not given one first time round but asked for this today on second treatment x
Hello Amoyart - I am having Herceptin and will be having my next injection on Monday (9/18, halfway there!).
The Herceptin you have with chemotherapy counts towards the 12 month course, which is 18 in total. Assuming you are having FEC-T, you will have the first three Herceptin with Docetaxel (Taxotere). You will then have another 15 Herceptin on their own every 3 weeks after your chemotherapy finishes.
Depending on the policy at your hospital, they may give you the Herceptin and Docetaxel on separate days. It sounds as though you are having all of your Herceptin by injection, whereas I had my first 3 intravenously with another targeted therapy drug (Perjeta = Pertuzumab) and the Docetaxel. The rest of the course is being given by injection.
The first dose of Herceptin is the 'loading' dose (double dose) so it takes longer. They will also monitor you to make sure you don't have an allergic reaction. Herceptin injections are given in the thigh, and they have to be given slowly. A standard dose takes about 5 minutes to inject, I assume the loading dose will therefore take about 10 minutes. It sounds horrible but it really isn't that bad provided the nurses are careful, and I have never had any serious pain from it.
Herceptin can have side effects but they are usually not serious. When you have it with chemotherapy, you can't tell which of the effects you are getting are from Herceptin, but for most people, the most horrible ones are caused by Docetaxel not Herceptin. The only SEs I have had that are likely to be caused by Herceptin (because they have persisted for a long time after chemotherapy ended) are a runny nose, occasional need to rush to the loo, and hot flushes/ red face for a few days immediately after the injection. The SEs seem to have settled down now, and are not as bad as they were.
I hope this helps set your mind at rest, or at least gives you some pointers towards possible questions to ask before you start the next phase of your treatment.
P.S. People generally don't notice when you are wearing a wig, because a) most wigs these days are very convincing and b) people are usually too wrapped up in what they are doing to notice that other people are wearing wigs, unless the wig is terrible and it is blindingly obvious.
Week 3 of EC number 2 & feeling fine. My mood has been lifted by a day out yesterday in 'the wig'. Felt like laughing/crying/cringing at first, bumped into my (very honest, tell it like it is neighbour) as soon as I stepped out of the front door who said I look totally like me, but with just come out of hairdressers look.
First trip and I went to the garden centre to buy manure. I really know how to live it up. Friends have bought me climbing roses instead of flowers etc and my so horse manure required 💩. Anyway the wig was fine, it is uncannily like my own hair and it felt ok. As Victoria Derbyshire says in her video re hair, you have to try to see it a friend that enables you to live as normal a life as possible during this crappy time. It did get hot in the car, couldn't open the window too much in case it blew it off/all over the place but I think it will just take getting used to.
Hair wise, had it shaved short (grade 3) on day of EC2 & since then its continued to shed (little spikey hairs now). I still have hair but very little on sides and patchy on top, so will probably need it shaved again at some point. I wonder if you lose it all, would prefer this as the patchy look is not great. Plus had an eye full of shedding spikey hair in the shower and scratched the cornea of my right eye, ended up in Eye Hosp with antibiotic eye drops and eye patch so didn't get out much over Easter. Didn't see that one coming. Brilliant eh? just when you look like/feelcrap these small things happen to make you feel even worse. Still I have been lucky with side effects again, just some gastric pain, tiny bit of constipation 😬and the usual fatigue.
Cartwheels, glad to hear you've recovered from Shingles, hope today goes well.
Onwards Good luck this week too.
Helen hope you had a good Easter with the kids and your sisters visit lifted your spirits.
Moonstruck - lovely idea re France trip, it's so tempting but scary as it's hard to predict how you'll feel by then.
Meash - sorry about late reply, I'm using E45 shampoo on head/hair it's very moisturising and also Jennifer Young cooling spritz which is great, very soothing. Also use her nail oil and hand balm at night since starting treatment.
Wishing everyone a good week
Love Eliza xx
Morning all! Hope you enjoyed Easter as much as side effects would allow 😉
I'm off to hospital this morning to get my bloods done ready for round two of FEC tomorrow, then having acupuncture at a local cancer charity centre - appparently it can help with nausea. Then off to have a wig fitting, with my one of my good friends so we can decide what style I should go for. Sometimes having cancer is a full time job.
Had a lovely, funny moment yesterday. I met a new friend for a cuppa, who I met through a Macmillan therapy course. She too is being treated for breast cancer. We took ourselves off to the ladies toilet to compare hair loss (she wears a wig) and compare boob scars. It made all this craziness seem a bit more normal. Although the other women in the toilet must have wondered what the hell we were doing....
Hi everyone and welcome to Lynhq27 - Hope everyone had a good Easter!
I had my third and final FEC on Friday, although it was delayed a few hours as I had to have my bloods redone as my electrolytes came back as low - ok on Friday. I felt okay, just a bit tired,a dn a fuzzy head most of the time - it's amazing how much I can sleep. I spent a few hours at my sister in laws yesterday afternoon with a house full of folk and got home and went to bed for 2 hours - so tired - I think listening to everyone talking wore me out!
Cartwheel, your shingles sound awful, on top of everything else - and a pain to have chemo delayed, hopefully that's it done with now.
I have to do 3 rounds of Docetaxel next - so will have to see how that goes - I've heard that it can make your bones achey.
Tryng to decide about a holiday in France in July that we have been invited to by some family - 4 weeks after my final chemo - the travelling would be complicated by flights and trains, and don't know how I'll feel at that point - don't want to feel rubbish in the middle of nowhere!
It's been quite cold here so haven't had much fresh air - hoping to get out today for a while to clear my head.
Hope everyone is doing okay.
Hi Cartwheels glad to hear you are back on track I am on second fec on Wednesday will be thinking of you fingers crossed it goes well for both of us x
Hi Helles belles like you second session of fec on Wednesday hoping ses will not be any worse than last time would be interested to know how people are doing after second round xx
Happy Easter everyone!
Tinkerbell - we must have started chemo at the same time as I will also be having my 6th round next week. I'll be half way there - yay!
I also try to have a long walk every day, and I noticed this week that I am getting pain in my knees and legs. I will keep on walking though. I am quite interested in mindfulness - do you use an app / book / CD / course??
I had a very short haircut this week. I usually wear my hair short so that wasn't too much of a shock to my system! My hair is falling out quite a lot now though and although it still looks OK, it feels thin. If it goes 'patchy' I will have it clippered off.
Love to all x
Happy Easter everyone!
Tinkerbell, I'm rattling too... I'm now on anti-virals for my shingles all through chemo and radiotherapy! I've set alarms on my phone as I need to take it 5 times a day and with chemo brain I know I'll forget.
Lyn, I tried the cold cap (have only had one FEC so far) and I've had significant hair lose this week, but mainly from my crown. I'm convinced it did not fit properly. So I'm now debating whether to just ditch it and embrace the baldness (easier said than done ;-)).
Meash, I can totally relate. Emotionally I've had a couple of really tough days this week. My shoulder length hair starting coming out at an alarming rate, so I took bull by horns and got a pixie cut at the hairdressers. The shingles scabs were healing over so I was no longer contagious to the hairdresser (the shingles was on my face. Thanks cancer). I actualy quite like the short hair, although I look about 5! but even so the hair was covering my pillow this morning. I know some women are ok with the hair loss, but I've been really upset and it's exhausted me emotionally. At least I still have my eyebrows and eyelashes. And haven't needed to shave under arms in 10 days!
RuthElisabeth and Moonstruck, how are you getting on with your next rounds of chemo?
Hope you are all doing well, I notice some are having chemo again this week I have my 2nd FEC on Monday so in for a resting week ahead. I hope you are managing with your shingles, I do feel for you.
I had a bit of a melt down today as my hair has come out in clumps, you know it's coming but it is still a very big shock. Trying to stay positive, my head feels very sore to touch it feels like someone has pulled it out. Can anyone recommend anything to put on it to moisturise and wash please.
thinking of you all on your chemo rounds, stay strong xx
Thank you Cartwheels,
I am already finding the group supportive and helpful!
I noticed today that more of my hair seems to be coming out than usual when I washed and combed it. As you say, not big clumps and not noticeable when I look at myself, but I suspect this is definitely the start of something! I usually wear my hair short, but will get a trim this week I think, and take it from there. I want to be in control of my hair loss as much as possible, so will have it clippered off if it gets very thin or patchy.
Shingles can be horrible, so I hope that clears up quickly for you.
Thanks too for the website link - I hadn't seen that one and I love a good online shop!
Three days to my 3rd FEC, so trying to make the best of my few good days. Had a nice walk canal walk yesterday with my husband which was sheltered in bits, so not too cold - lovely to hear the birds singing! Today I went into work for the first time since the end of January - it felt so familiar and good to be talking about work - it's a very small office so not many folk around.
Amanda - my hair loss started about 2 weeks after my first chemo - very gradual but I found it annoying leaving a trail of hair everywhere and had a pixie cut and then all off before my second chemo. It felt very strange at first but now I've gotten used to wearing hats and my wig now and then. I was given Dermol 500 by the chemo nurses to use as a shower cream, hand wash and to wash my hair - or you can use an E45 product, or non perfumed. I was also given Oilatum cream to moisturise my scalp each night, or you can use a non perfumed face cream.
Emotionally this is very difficult ( which is an understatement!) - it took me a long time to accept this was all real - and at times I still think it's just a bad dream - still have low days when I'm feeling crap and just want to cry. It's also difficult trying to get friends and family to understand what you're going through - I do get a lot of support from them, but it's great to have this forum to share experiences and have a rant with others who are going through similar experiences - and also laugh at some of the things we put up with.
Like a lot of folk I am counting down the weeks when I don't have to think about my next chemo - it does sound like you have a tough time ahead of you, but you will get there. Join the club who are thinking about a relaxing holiday somewhere warm sitting with a good book and a cocktail - mine's a French martini or a pina colada !☺️
Its a real help to know we are all going through this journey together and to read your experiences and how you cope. Had 2nd round of chemotherapy last Thursday and have had a long hard weekend and spent most of it in bed , but it's good to be feeling alot better today and able to get outside in the fresh air. As some of you have said make the most of the good days and be kind to yourself on the bad ones.Take care.
Hi everyone. Welcome to the new ones that have joined and hope everyone else is doing ok.
I've had my second lot of FEC today and all went well. They managed to find a good vein which helped and it didn't ache as much as the first time. I started taking my ant-sickness meds yesterday so that they are in my system already which will hopefully stave off the nausea a bit more. I am also trying to drink loads of water to flush my system through so will see if that helps.
Cartwheels - how are you doing? Sorry to hear that you have had shingles. Has that delayed your second chemo?
i feel that I've been through the whole hair loss process over the last 2 weeks! I had brown shoulder length hair this time two weeks ago. On the Wednesday I had my hair cut short. Last week I went for my wig fitting and found something I was happy with but she did say I needed to get my hair shaved off as quite a lot was starting to come out and I was going away at the weekend so she said it could make me self conscious and not relax. She would have done it there and then but I wasn't ready so came home and did it. I have found sleeping a bit uncomfortable as the short stubby hairs tend to dig in when I put my head on the pillow. I have started sleeping in one of my bamboo turbans which is a bit better. Still got some hair but it is rapidly thinning and lost all my underarm hair which as others have said is a bonus!
Also touched to get a Freddo Frog Easter egg when I went for chemo today - all donated to the ward by Morrisons - and some flowers from friends at work when I got back home. It's the kindness and thoughtfulness of people that really helps.
For those of you who are feeling rubbish - hoping that it will pass and you will get some good days. For those of you who are feeling good - enjoy! X
Thanks for the advice. Reflux is just hideous, isn't it?! Pleased to hear yours is on the wane again.
Never had it before having chemotherapy, except after eating chip butties, so I fear chips are not recommended (damn!)
My reflux is better (nurse advised me to take Gavison) and I'm sleeping on my left at the moment, purely by conincidence as I've got shingles on my right side of face so have very painful glands in the right side of my neck. But I will try your milk advice, thank you.
Welcome! It's a great group here, lots of support and advice.
Sorry to hear chemo has been tough, I think many of us feel the same. I've only had one cycle so far, but I had a couple of days when I felt so depressed and did not want to talk or see anyone and felt quite numb and bleak.
My chemo is not the same as yours - I'm on FEC T, so my hair loss may be different. I tried the cold cap, but I'm sure it did not fit tightly enough. Not sure if you had cold cap too? I think without it the hair loss is more rapid.
I washed my hair just once a week, using a wide toothed comb and dry shampoo in between to stay presentable and keep my hair for as long as possible.
My scalp became itchy and tight on about day 14, then day 19 it started to come out. I washed my hair and about 5 times the amount came out that normally would (my hair is shoulder length bob). I can run my fingers through my hair and lots of hairs come out, but it's not great big clumps. I've been surpsingly ok about it so far, as it's not noticeable. I'm almost a bit fascinated by the process!
My plan was to get a pixie cut once this happened, but I got shingles on my face a few days ago (low immune system, thanks for that!) so I'm contagious and I don't want to expose my hairdressers to infection risk. I think I have a patch of shingles blisters on my scalp too. Yuk!
Also, my underarm hair seems to have stopped growing since about day 15 and my pubic hair is falling out at a rapid rate. No more shaving and waxing for a few months, there have to be some plus sides to all this 😉
I don't have any scalp advise, but this website sells some great things to make treatment more bearable:
I am new to this thread. I was diagnosed with DCIS in January and had a mastectomy and a silicone implant in February. Pathology showed Grade 2 invasive cells, so I am having Paclitaxel weekly for 12 weeks, with 3-weekly Herceptin for a year, followed by Tamoxifen for 10 years. I have completed 4 of the 12 Paclitaxel rounds.
The physical side effects this week weren't too bad - mostly fatigue and some nausea. I have had a sore mouth, headaches, a spotty rash, a runny nose and peripheral neuropathy in previous weeks. One of the worst side effects for me has been the loss of taste buds, and this does not seem to lessen between chemo rounds.
Emotionally, I am finding chemotherapy hard. The pathology result was difficult to hear as I was not expecting to have further treatment after my initial diagnosis and surgery. My lymph nodes are clear though.
I still have my hair, but I am expecting to lose it over the next couple of weeks. My hairdresser is on standby with the clippers!
I am interested to know your experiences of hair loss - does it go overnight or gradually - if so, over what period of time? I am also looking for information about caring for a bald head. Which creams, soaps etc do you recommend?
Love to all,