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 ;-)
It seems that most people do have someone to check in with prior to each chemo. I'm just worried that on alternate chemos I only have blood tests at the GP and thats it. I feel I would want to discuss how I've felt during the month re side effects. Apparently it was the oncolgists decision that I would only see him on alternate chemos. Its crazy that at my hospital they don't have the facility to see a nurse pre each chemo so they can feed back to the oncologist. i'm going to see what I can do about it. Hopefully transfer to the other oncologist!
I wasn't prescribed gelclair but I have since read about them. If sore throat happens again I;ll definately ask for them! Re headaches and dizzyness...are you on FEC? I am and from searching on the forum I found that some women do tend to suffer with dizzyness on fec but usually around chemo 3/4. I also had headaches about a week post chemo - went on for around 10 days but they've cleared. Yes I wonder if the dizzyness is linked to anxiety. I know I'm so stressed and anxious by not feeling I'm getting great care and you must feel anxious after what you've been through. Hopefully the next chemo will be better for all of us who've not had a great time with this one! xxx
Thanks for getting back to me. I'm ok thanks. Bit worried in case chemo is postponed again tomorrow due to the stronger antibiotics I'm on now but what will be will be I guess! How are you doing? When is your next chemo due?
Can I just ask - when you say you have bloods and assessment prior to every chemo what assessments do they do?? Just check you're doing ok etc?
Hi Angelblue. I see my Oncologist before I started chemo, after the first chemo and then after the 5th chemo. They are based at another hospital. I go to the chemo unit at the local hospital for bloods and assessment 2 days prior to chemo. The unit is in contact with the Oncology team if there are problems. The breast nurses are based st my local hospital but said if there’s a problem with my chemo to contact the chemo unit. The breast care nurses are very supportive, so I’ve found. It seems there are regional differences. My breast unit has a good reputation. How are you doing? Xx
I just wanted to check what level of support/care others are receiving?
I only have appointments with my oncologist before my 2nd, 4th and 6th chemo, and as I said in my last post the pre 2nd chemo appointment only lasted 5 minutes! I have blood tests done at the Gp which are sent to hospital (my weight isn't taken - is that normal??) Breast care nurses are based at the breast surgery centre which is at a different location. they aren't present in Oncology at all and if you want to speak to one you have to phone and leave a message on an ansaphone and wait 24 hours for a reply.
Can I ask what care/monitoring others are getting...is it similar..especially re appointments/thoroughness of oncologist? It just doesn't seem very much ..or am I just being overly anxious??
Thank you. Unfortunately I ended up at the Urgent Care centre again yesterday morning. I finished my antibiotics Friday morning and by the evening I could tell my throat was getting worse again. By sat morning it was redder than ever with with white spots. Urgent Care GP gave me stronger antibiotics but he said to call my oncologist first thing monday morning before chemo to let him know. Not that I hold out much hope. On my pre-chemo 2 appointment on 28th December I told him about sore throat and he didn't even look at it - just prescribed a mouthwash. I was only in with him for 5 minutes. I also told him that I was dizzy when I stood still and it wasn't improving - he didn't even address that! Then I had my bloods done on Thursday monring to check chemo could go ahead on monday after the one week delay. I didn't hear anything on Friday so I called the hospital at 3pm. The nurse finally called me back and said she'd managed to grab oncologist to check bloods and he said alhthough still low i could go ahead on Monday. Tomorrow I'm going to ask whether my blood results would have been checked and someone got back to me had I not phoned. I have to be honest I have little confidence in my oncolgist and want to change. I did ask about this intially but was told it may delay treatment to get the oncologist I wanted (head of breast cancer research)as I'd have to wait for an appointment. But I know this oncologist has private appointments at the local Nuffield and I'm thinking of asking if I could book and pay for an initial appointment with her at Nuffield so that she could continue my NHS care. Although it would cost £200-ish?? I'd be happy to whack it on a credit card to get peace of mind.
Thanks for your tips/info about neutropenia as well. Sounds like you've really been through the mill. I hope your next one is better and you're getting good care. Re honey I've got some mgo525 manuka honey from Holland and barret. It was £32 for a 500g jar (in penny sale it should be £64...but usually on offer!!). I'd read it was great for sore throats and white blood count but didn't really help me this time...unless I would have been worse without it maybe!?
Yes I was given 7 injections rather than 5. The lump started to soften and shrink towards the end of the 1st dose but don’t expect that to be the norm. Just as everyone’s cancer is different so is the response xx
I get weighted when I give blood for my blood test so they can inform my oncologist. I forgot to ask if they amended my dosisdosis they told me they rather not.
Hi Dikat, just been reading the December thread and just wanted to say that I had exactly the same reaction to my 1st dose of fec down to the neuts of 0.03. However my onc reduced my dose by 20 percent and I am about to have my fourth and final fec on Thursday and have had no further neutropenia and coped much better. There is some tolerance allowed apparently within the dosages as you have to survive the treatment before you can survive the disease and despite the lower dose my lump is rapidly reducing.
A piece of advice I would offer to everyone is that if you have lost much weight during a cycle let your onc know as this determines your dosage and none of us wants to be given more than we need!
@pigeon I didn't have any liver-specific symptoms. In fact, I felt great -- in the 3 days before the blood test, I'd been hiking in the Wye valley with my OH and sister, visiting from the US, doing about 10 to 12 miles each day, with some ascent. My sister joked that she was having trouble keeping up with me, but that was mostly because she was lugging her laptop in her rucksack.
I had my chemo before my breast surgery, other than SLNBs, and the IDC and DCIS in my right breast wasn't palpable or visible on US, which is why I got MRIs before, midway through, and after chemo.
@reddi Wow, 60 to 240 is quite the leap! I think mine was something like 144 previous cycle, and 177 this week. I’m not sure specifically which liver function reading that was, they did say I had one in the normal range and this one that is high.
Did you have any symptoms from your liver issues? I was surprised by mine today, as I feel relatively well this week. 🤷♀️
Its a relief to hear that the T is still effective at a reduced dose. I'm not sure if I’ll be given a post chemo MRI since I had a mastectomy already, and the chemo in my case is to pick up any stray cancer cells lingering anywhere, since I had one positive lymph node of the five removed. While I know that chemo is necessary, I do wish that when I finish treatment, I could get some test done to show that all of this has done me some good!