Hi Dikat, which steroid are you on - I take dexamethasone 2mg 2 twice a day - but was told firmly to take first dose at 8am and the second before 2pm (even though instructions say space evenly through the day) or I wouldn’t sleep at night. Perhaps ask your helpline whether you can change timings.
i am fortunate that I don’t get the bone pain with filgrastim although they do make me feel very jittery and everything seems to fizz but a lot of people take the antihistamine loratadine which seems to help. X
Yes I agree with Jencat, feel like a lie down after a shopping centre at the best of times so you did well. Are you having Taxol on it's own or with anything else. My next stage will be surgery. I've kind of been burying my head about which way to go. Breast consultant initially said lumpectomy and I also have multiple lymph nodes affected. She says she's happy to do mastectomy if that's what I want but there's no guarantees it won't come back elsewhere in my body. I know it's a decision only I can make but do you or anyone know of a good reputable site where I can get info to make a well informed decision on the best possible odds. Thank you xx
Jencat hope you're coping and feeling ok.
So day 3 after 2nd fec today. Managed to get out of bed about 6pm yesterday as dizziness had started to subside. Ate pretty well throughout the day too. Hardly slept a wink last night, steroids I guess. Does everyone else have 3 a day for 3 days after chemo day. Mine say take after meals and don't have tea til 6ish so last one ends up being quite late. Had banging head at half 3 this morning so had to take some paracetamol. Not keen on doing this due to bashing liver gets from chemo. My throat doesn't feel as harsh today. The biotene toothpaste and mouthwash seemed to help although I did freak a bit when I saw that the mouthwash contains 2 types of parabens, cant win! I also took my first teaspoon of life mel honey last night and swished it round in my mouth. It felt like that provided some relief in my throat and gullet too. So the first of 10 filgrastim injections today, not keen on the pelvis, top of leg pain and headaches the 5 from cycle 1 provided me with last time but here's hoping they keep the dreaded neutropenia at bay this time 🤞
Wishing everyone a good day xx
Drummerswidow, I think you must live in my area as you went to Bluewater-it's my nearest shopping centre. I'm worn out going there without having chemo as well! x
Hi DiKat. I’m okay thanks. Managed to get to Bluewater shopping Centre early today but had to have a lie down this afternoon to get over it!
Bloods and PICC dressing change tomorrow in readiness for chemo on Monday if all okay. I have one more EC after that then 4 cycles of Taxol. Got 4 weeks Radiotherapy after that. It seems relentless. Never mind it’ll fly by!
One more fec then move on to 3 cycles of Taxotere/Herceptin/Pertuzumab. I've been trying to avoid reading about these but keep stumbling on things that say they're worse. Yikes!
Cant believe I've already started with throat problems again this cycle and it's only day 2. My voice has nearly gone and I'm being really careful, cleaning teeth regularly with soft tooth brush, using mouthwash and drinking properly. I'm never sure if it's coming from my throat and or up through my gullet from my stomach. Have long standing bowel and digestive issues so this is a weak area for me. I already take esomeprazole 20mg twice daily and asked Oncologist on Monday if I could increase whilst on chemo and he said no as would cause issues with constipation!
How are you doing? Xx
Hi Pastamissus. I didn’t mean to imply that Manuka honey will help boost neutrophils as I know it doesn’t but it can help with some symptoms ie soothing sore throats.
Thanks for the info on hair loss, Drummerswidow. I have hopes that my few last bits will just take a dive with the next Chemo. At the moment it is good to have a few bits of fringe etc poking out of my headscarf. Today I tried out the stuff I bought to do my faintly-still-showing eyebrows. I'm not sure I have got it right - looks a bit menacing to me! But husband says it looks fine and maybe I had just got so used to not much definition being left that it strikes me more now I have tried to correct it than it would others.
Shi thanks for your info. Really valuable as always 😘
Rapunzel2018 like Drummerswidow says, the honey will be good for your throat if nothing else and Manuka is a really good one.
Jayne1966 I know what you mean about not realising there's so many types of BC. I feel we have to trust that the Breast Cons & Onc and rest of team have chosen the best treatment pathway that's specific to us.
Drummerswidow yes getting lots of comments about being positive and brave etc. I think people who haven't experienced this feel they need to boost us in this way and I've had some say if it was them they'd be in pieces. I do feel like this on some days but know I've got to hold it together and carry on.
Well had my 2nd Fec yesterday, yay 2 down. Had reduced dose so now at 80%. It really doesn't like me!!!! Felt the effects quicker this time. Totally spaced out, feel like I've been hit by a bus and mouth feels what I can only imagine what it would feel like to eat the bottom of a bird cage😂😂 have to see the funny side at times. Spent most of the night tossing and turning feeling cold to the touch but in a pool of sweat, sorry to sound gross. I'm just so tired, head is pounding but can't sleep. On a positive note feel less nauseous and managed a bowl of porridge for breakfast. I so don't want to lose any more weight, I'm 5ft 5, weighed 8st 11 beginning of Nov, 7st 12 now...might look good on a pert muscular young woman but not so good on a sagging and what feels like rapidly aging 49 year old 😂 Anyway got some biotene dry mouth toothpaste and mouthwash on it's way to me today so hope that helps a little with the dryness. Keep forgetting to ask for these things on prescription and really must start as not working throughout treatment and not entitled to any sick pay.
Sorry for the long post but trying to keep my mind off how rubbish I feel and gain such great support from these threads 😘
Don't let my experiences cause worry/anxiety to anyone else. I have always been a lightweight with medication and suffered side effects so to take such quantities now, it's hardly surprising!
Hope everyone has a good day, love & best wishes xxx
There's no proof that honey (of any type) helps the imune system. It does help wounds heal if spread on the wound though.
Re boosting neutrophils - the only thing that works is GCSF injections or reducing the dose of chemo.
I know how how you feel. Conversely I’m getting a bit fed up with people telling me how brave I am, how positive I am. I’m not inside and when I’m home alone I’m panicking about my finances as well as my health. I too look in the mirror, not too often, and I feel as if I have been mutilated. My scar is horrendous, I’m fat and I have no hair.
We we are all just getting on with it but it’s an uphill struggle most days. I’m finding people keep telling me how well I look! How am I supposed to look. I am making an effort and putting on makeup when I go out. Just want to scream sometimes xx
Thanks for telling me about the honey. Wonder whether Manuka would also do the job (it's easier to get hold of that). It's all rather expensive. I hope your appetite returns soon and that you'll be able to eat well and keep strong. My other half kept reminding me I had to eat on the days when I really didn't feel I could stomach much. Had to force myself sometimes but have managed to keep my weight stable this way.
All the best,
Yes, that's how I feel - not keen on the side effects but also don't really want therapy to be postponed (although to be perfectly honest I could do without any more therapies but who wouldn't want that). No, I haven't been given any G-CSF injections so far. Will ask my oncologist about them. I've read that neutropenia often is most severe in cycle 1, that gives me hope. Am a little worried at the moment but fingers crossed that I won't get an infection and that WBC will recover quickly. Ironically, the antibiotics I'm on at the moment can also cause neutropenia. Can't win, apparently. Another question to ask the oncology team.
All the best,
Hi Rapunzel2018. Sorry your chemo has been postponed. It’s funny, we don’t want the chemo because of the side effects but we don’t want it postponed either. A pain having more antibiotics. Are you not having any G-CSF injections? Hope you get your chemo soon and feel better x
Sorry to hear your chemo has been postponed Rapunzel2018. It is disheartening at the time but I realised I needed to be stronger than I was to cope with next cycle. Hopefully it won't be too long a delay! I know what you mean about taking lots of antibiotics...makes you wonder if they are still going to work if you desperately need them, not to mention the damage it does to our gut destroying healthy bacteria etc.(well that's if there's any left after the chemo!! In terms of boosting your immune system, my onc has told me to take a good general multivitamin. I had lost quite a bit of weight though and wasn't eating well from neutropenic sepsis cycle 1 so if your diet is good this might not be necessary. I have just got some of the life mel honey to try (very expensive) https://www.boldbeanies.com/blogs/news/dr-chris-recommends-honey-to-help-patients-with-chemotherapy I read this article but there are others that say it's a con. I will try anything once not to go neutropenic again so will see how I get on this cycle.
Good luck xx
I joined the club of those whose 2nd chemo had to be postponed today, potentially by a week, maybe less. Apparently my neutrophils/WBC are too low (that's what the pre-treatment blood test showed). Didn't get any boost shots with my first FEC but will ask oncologist about them for the next chemos to come. I've also been given a 10-day course of antibiotics since I developed a bit of a sore throat and some white patches on the tonsils, and the GP wanted to be safe rather than sorry. Oncolgy ward also phoned to check on me but decided not to call me into hospital since I seem stable; if I feel worse I have to call them, of course. Now I keep fingers crossed the antibiotics will help sort things and the WBC will go up so 2nd chemo can go ahead next week. I'm a bit tired of taking antibiotics, tbh - if I count both oral and intravenous antibiotics, this is the fourth in less than a month. No fun. Does anyone have any good ideas on how to boost WBCs/neutrophils - or any experience how fast they can recover?
At least I went out today wearing just a headscarf. No wig (although I quite like mine, I didn't feel like wearing it today). Felt a bit conspicuous but otoh I (and everyone else) have to accept that that's just how I look now - I guess it takes some time getting used to it. I think one or two people stared at me (at the GP surgery mostly) but most people didn't bat an eyelid, which is good.
All the best to everyone,
Hi MaryKamille. My hair started coming out about 10 days after the first EC chemo. I had most of it taken off. After the second chemo I just had a few bits so had that taken off so I now have none. Hair gone from other areas too 😜 lol. Not got a wig yet but think I will have to succumb x
Good luck for your chemo tomorrow and hopefully it will be kind and not cause you any problems like last time.
I've had my second fec this aft. Struggled with cannula this time but managed eventually. Currently feeling like I've stepped off the waltzers after drinking a bottle of wine. Not that I've ever done that😂 I've got to give myself 10 Filgrastim injections this time instead of the usual 5(which is not uncommon with FEC I was told) due to my neutropenia last time. Oh the Joy's....
Take care xx
I've decided it's the colour of my wig I'm struggling with. It's very dark brown and although I used to be this colour, for the past few years I've gone a couple of shades lighter as thought it was starting to look harsh on my ageing skin. Think I'm going to have to get another one. I don't wear anything on my head at home. Hubby, kids and grandkids don't seem to mind. We have to do what's best for us to make this journey as tolerable as possible.
Sending hugs, take care xx
Second FEC tomorrow. Been making the most of having some brain by learning how to do French knots and then finishing off a cross-stitch which needed 108 of them! Hair only just starting to come out. Hope the next FEC goes as well as the first one - no real problems except tiredness and weird dreams while on steroids.
I will let you know how I get on with the dioralyte for the BP issue. Onc said to have couple a day so I will start today in prep for tomorrow.
Hope you are getting on ok with your wig. I've been wearing mine out but still don't think it's quite me. It's a Bob. I had it inverted at the back but still feel it looks a little too precise so might go and get it cut into a bit more. I've ordered various headwear/scarves but don't feel they suit me! Never have been good with hats. Admire all you people that rock the bald look. Maybe I'll get there, still getting my head around it all as only diagnosed 14th Nov.
Take care xxx
Glad you were able to have your chemo and that you'll get to see an different oncologist. I really feel with you and anyone else who finds it difficult to trust (some) members of the medical profession at times. Especially in a situation like the one we find ourselves in, it is hard to be one's own advocate on top of everything else, but - as someone wrote to me yesterday - when you're going through this illness and treatment, you'll find a strength in yourself you didn't even know you had before. It will help carry you through - and so will people who genuinely care and want to help.
All the best to you - and everyone else,
Glad to hear that your second FEC is going ahead, and that the lump seems to be getting smaller! Thank you for mentioning low BP as a side effect. That's definitely something I can relate to as well. Will keep an eye on it.
Fingers crossed for you tomorrow!
Hi Marykamille - if I recall correctly it was your extraction yesterday??? If so I hope it went well and you're feeling ok xxx
That great news that you're going ahead for wednesday - fingers crossed. Its extra stress and worry when its delayed. And its good news you were able to have a good conversation with your oncologist...and brilliant news that your lump is shrinking.
My chemo went ahead yesterday!! The on call registrar decided to do bloods first due to previous low blood count and as I was still on the stronger antibiotics. That meant an additional 2 hour wait but I didn't mind. Luckily all was ok and went ahead. I had an inexperienced nurse try to put in the cannula. It was awful. She didn't do it right, it was so painful. Due to my complete phobia of canullas I was incredibly upset and asked for the nurse I'd had previously to do it. It still took another 2 attempts though as veins withdraw after first attempt. They agreed that I should potentially have a PICC line due to how distressed I get with Canulla - but then I don't know how I'd feel with something permanently there. I'm maybe going to see how my hand/veins heal this week first. More good news is that I spoke with someone about changing oncologists and it seems very straightforward. We've agreed I'll call later in week to discuss this as with yesterday being my chemo I needed to focus on that.
Love to you all, I hope everyones getting on ok xxx
Just seen my onc consultant and feeling more positive. Glad I had made my list of questions and side effects. Despite my neutropenia from chemo 1 (FEC) he was going to keep me at full dose but when I informed him of all my other side effects, mainly my low BP, nearly passing out on chemo day and generally feeling spaced out, he has decided to reduce by 20%. I had mixed feelings about this but felt a bit more reassured when he examined my breast and said he can already feel a reduction in my lump so feels I am responding well. He also advised me to start using mouthwash as of today, prior to my chemo on Wednesday, to take a general multivitamin because this will support the filgrastim to do it's job (this is due to me not eating very well from nausea I experienced and the sore mouth) for people having a normal healthy diet this wouldn't be necessary but probably wouldn't hurt to have an extra boost. He also told me to take dioralyte to help increase my BP. I have a naturally low BP and he said the chemo and combination of drugs afterwards can lower BP so not great in my case. He also reassured me that my raised liver bloods were nothing to worry about, again down to the chemo and antibiotics I'd had. So, all being well chemo 2 on Wednesday....I CAN DO THIS! Hope everyone else finds some of this info useful.
Angelblue, fingers crossed for you today and how is everyone else doing who started in December?
Hi Angelblue. My next chemo is on the 14th January all being well. Funny how we kind of look forward to a chemo session! I hope you get your chemo sorted.
It’s a nurse led clinic 2 days before the chemo. I see one of the Sisters. They do pulse, bp, temp and weigh you. Ask me questions which they input the answers as it goes over to the Oncology Unit which is a few miles away. They want to know re nausea, pain, sleep pattern, how you are emotionally and mentally. The chemo support worker changes my PICC line dressing and takes bloods. I was pretty upset last time so they got the Chaplain to come and see me on chemo day. I’m not religious but he’s pretty good. They have counselling skills don’t they. All the staff know that I’m on my own at home.
I have to say when my husband had cancer 8 years ago, it wasn’t as good. So far so good apart from a small hiccup but I’m doing some meditation which keeps me calm. Well most of the time lol.
Well done on being so brave today. Its a big deal. I'm really glad you're feeling happier now that your hairs cut and you've got your wig sorted. I think its a big step psychologically and like you say it gives you some control over this process. If my chemo goes ahead tomorrow I'm thinking of shaving my head on Tuesday or wednesday.
Thanks for the info re the level of care/monitoring your receiving. Like I said before it does seem that most people have someone within oncology to check in with on each chemo cycle. I really feel short changed! As well as asking to change oncologist I'm thinking of contacting the PALS (Ithink thats what its called!!) at my hosptial with my concerns. but its just an added stress when you're trying to get through chemo!
I've also been referrred to the psycho-oncology service and have my first appointment 18th Jan. I think this will help! I was referred by a breast care nurse after surgery when I was first insisting on the Oncotype DX test - which they all said I didn't need. I was told I was 'being silly' for insisting on it (but in the end it showed I wasn't low risk as I'd been told but high risk..so not so silly after all!!). I have anxieties which go back to when I had Guillain Barre Syndrome. I was really ill before anyone medical would take it seriously and have a distrust of medical profession which has been exascerbated by the current situation!
Let me know how you get on re your chemo change
Hi DiKat I found my first dose of FEC back in 2011 horrible with lots of sickness and constant nausea. I was dreading going through the same on the second but it was much better and the 3rd one was better still. But I needed lots of antibiotics throughout my treatment mainly for sore throat and I just had to ring the doctor and they’d do a prescription for me to collect so I didn’t have to sit in a germ filled waiting room. Good luck with your next dose.
with regard to how I'm looked after:
I saw my oncologist before the first chemo. Normally I would only see her again half-way through (i.e. after chemo no 3 of 6) but because I'm still wondering whether another chemo regimen might be more beneficial for me, my oncologist arranged for an earlier appointment (after chemo no. 2).
I have bloods taken before the next scheduled chemo and then the chemo ward rings me on the day beforehand to go through the side effects I've experienced. I also had someone ring me after Christmas - just to check in with me and everyone else who had had chemo before Christmas and to see how I/we was/were doing.
The latter call may also have been prompted by the fact that I had had to go to hospital right after the chemo and been in touch with the local Cancer hotline about a bit of a persistent cough.
In theory, I'm meant to ring the central helpline first if serious, chemo-related problems arise. I would also be able to consult my GP if there are side effects that they can prescribe something for.
The breast care nurses are based at my local hospital (I have chemo at another hospital and will have radiotherapy at another hospital yet again - so I'll be getting to know quite a few hospitals). I can always ring them with questions but they're not really involved with the chemo treatments - they can answer general questions, of course, and they are generally a good source of support.
Overall, I feel well looked after. I guess more blood tests could be taken but I'm not sure what good it would do. As long as I know where to turn in case of emergencies, etc. I wonder about the aftercare of the surgery scar/tissue a little. Will ask my oncologist about that next time I see them.
I also got a referral from my GP to see a psychologist (got an appointment in February). This is related to a long-standing issue with anxiety, but it is also a good time for me to see someone.
All the best,
Hello everyone -
this is just a bit of advice for anyone who is still waiting for their hair to come out and who is anxious about that. My hair did start to come out yesterday, and I got rather upset, so I got in touch with my hairdresser today to get the wig sorted (I had been to see him a few weeks ago just to choose the wig and for an initial consultation). He cut my hair really short (to a few milimeters) and then personalized the wig for me. I was feeling really really low this morning but after the hairdresser's appointment I felt much better. Am very happy with the result - artificial hair, paid for by the NHS, relatively short (which is easier to deal with/look after/transition into and out of). The hairdresser also said that by cutting the hair really short before it sheds more and more, one can prevent the scalp from becoming too tender and itchy. It's also a good idea from a psychological point of view: gives one a sense of control. I may end up wearing the wig only at certain times and opt for scarves or hats at others - but it's great to have a choice.
All the best to everyone,
(now even more aptly named ;-)