Breast Cancer Now Forum

ps dikat - good luck for tomorrow with the oncologist xxx ... View more

Hi Dikat   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  ... View more

Hi drummerswidow   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?    xxx ... View more

Hi all   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??   Thanks xxxx ... View more

Hi Dikat   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!?   xxx ... View more

Hi Pinklily   My oncotype came back at 31 - the start of high risk. I already have peripheral neuropathy in my feet from a previous illness - Guillain Barre Syndrome. Because of this I can't have any of the taxanes and I'm having 6 x FEC. I actually feel upset because although I'm putting myself through the horrible scary process of chemo I can't have the most effective chemo ...which would be 3 x FEC followed by paclitaxol. So in a way I feel the opposite to you!   The unknown is scary. I've got my second FEC on Monday and I'm dreading it. When you read the side effects for the various chemo drugs they can seem horrendous and its horrible going into it not knowing what you'll get. What I will say is that you have to remember you tend to only read about negative experiences as thats when people often post -  when they are looking for support.  Also, from what I've read many people who get neuropathy from chemo do recover. And I've lived with neuropathy for 13 years. Its like a buzzy, slightly numb feeling in my feet.. I notice it more when I think about it...like now! I'd prefer not to have it but it really doesn't impact on my quality of life or stop me doing anything at all. I love walking and I'm very fit and active.    Hope this helps  xxx ... View more

Hi Rapunzel   Sorry to hear you've had a bad time. Glad to hear you're feeling better, It seems theres not many of us for whom its been straighforward. Although my second chemo was postponed I'm lucky not to have too serious side effects. Although the bleeding I had and now this sore throat are a pain!   It adds to the stress when you worry about finances too. You shouldn't feel bad that you can't do as much but I know its hard relying on other people to do more. You have to think that you would happily do more for them if the situation were reversed.   Like you I'm waiting for my hair to go. It is a weird thing to have to be doing!! Mine is shedding but not in clumps yet. But I know after chemo on Monday it won't have very long left. I'm planning on shaving it off on Tuesday. Well I say that but I feel sad and scared. I know some of the other December ladies have braved it though!  xxx ... View more

Hi Dikat   No I don't know what the lowest white blood count they'll accept is. I had tried looking on internet to try and found out but can't find any reference to it. Would be interesting to know though. I know the normal range is 4-11. Mine was 3.2 last week. I'm guessing it's still under 4 now. I'm a bit nervous about going ahead with chemo with it still being low but I have to trust it'll be ok!  Can I ask how it was found out you had neutropenia..did you have a high temperature? Hope your liver results are ok. Its so scary all of this!   I've also had a sore throat since last Weds (26th Dec). I told oncologist last Friday and he said it can happen and prescribed a mouthwash ... he didn't even look in my throat!! By New Years Eve it was worse and I ended up at Urgent care Centre and got given anitbiotics as a precaution. Finished antibiotics this morning and throat still feeling sore. Will mention this on Monday if I still have it or call them over weekend if it gets worse. Just a bit worried about having chemo with sore throat and low white blood count!! Roll on Summer when this (well at least the chemo) is all over!!   xx ... View more

Hi Wahini   How are you feeling after your chemo yesterday? Hope you're bearing up. Thats such good luck that deciding to apply for life insurance actually prompted you to consider that scar and investigate the hard tissue underneath. In a way its paid up in terms of your health if not financially. I do wonder if unconsciously we sometimes know theres something wrong. In the months before my first routine mammogram I had started looking for permanent work as it was playing on my mind that should I be ill I had nothing to fall back on. I'd also just looked into getting critical illness cover and life insurance. But I'd got myself so bogged down looking at different policies and what they did/didn't cover that in the end I decided to have a break from it and pushed the paperwork to one side...what a mistake!!   It is annoying and unfair to think that if I were renting my house I'd be getting my rent paid but I can't do anything about that. I should have got myself sorted out with permanent work and critical illness cover sooner...its my own fault! I will just about scrape by with a loan and universal credit.    Although my white blood count is still a little low my chemo is going ahead on Monday thankfully. I do agree that psychologically to think of being a third of the way through is a boost. I hope all you other ladies who have been delayed get good news next week.    xxx ... View more

drummerswidow - its hard when you have the additional financial stress on top of everything else. Its a shame you've had to use your pension. I had just started applying for permanent work when all this happened as it was always in the back of mind ...what I would do if I was ever ill. I should have started applying sooner! xx   kathyx - thanks for that info. I think it works out cheaper if I get a credit card balance transfer loan but I'll look into it more. I hope you're doing ok xx ... View more

Hi   Dicat - I thought the same about my delay, that I would try to enjoy the time and get myself back to strength. But although I definately feel better than this time last week I haven't felt relaxed at all! I hope you get the go ahead on Monday for Wednesday xx   Jencat - thanks, yes I've been in touch with MacMillan and got a small grant of £185 but theres not much else available out there. I should just about get by with credit card loan and Universal Credit. Plus I've got so much stuff that I've saved with the intention to sell on ebay and never get round to listing it ...so nows a perfect time!! Hope you're doing ok xx   Drummerswidow - just read your message as I'm writing this one! Hope you're doing ok xx   I'm really going to try not to stress about money. I just have to think that although things aren't great at the moment they're far worse for some people. I have good family and friends and there is an end in sight to all this xxx ... View more

Hi all   I think we are all suffering from a lovely combination of chemo blues and January blues! Aren't we lucky having chemo in winter when there are coughs and colds floating around and  the weather is dark and depressing!!  After finding out my chemo's delayed for at least a week due to low white blood count  I've found this last week difficult to be honest. It just feels like dead time and although I want to get it over with its making me dread my next chemo more. But had my bloods done again this morning so all being well my next chemo should be Monday.   Hairwise - I still have a decent covering but shedding a lot. I'm leaving a snail trail of hair behind me wherever I go. Also my hair is so lank and lifeless...it looks like I've got a dead cat plonked on my head!! Like a lot of you have commented, although I thought I was prepared, I'm finding it hard the thought of saying goodbye to my hair. I'm also worried about the fact that after chemo and radiotherapy I'm on tamoxifen for 10 years. As tamoxifen can be tough on your hair as well I'm worried if my hair will ever fully recover. But one step at a time I guess!   Money wise - I was on a casual contract and so had to apply for Universal Credit before my surgery. That was a joy...!!! I have a mortgage and I've discovered that if I was renting my house (rent would be £650ish) I would get my rent paid but I don't get help with my mortgage. When I was younger I made a conscious effort to save for a deposit, depriving myself of holidays etc. Now I think I should have just enjoyed myself and not bothered buying! It just make no sense that, if I were renting, the government would be willing to contribute towards the mortgage of my landlord who's bought a buy-to-let for his pension pot but not willing to contribute when its my mortgage! I've spent this morning looking at credit card balance transfer cards to use as a way of getting a cheap loan as my monthly universal credit payment doesn't even cover my mortgage payment let alone other bills and food. So stressful but I'm trying not to worry about it as worry doesn't really help recovery and relaxation...plus we have enough to worry about with bl**dy chemo!!!   Anyhow after that little rant of doom and gloom(!!!) I am trying to keep positive and focus on the time when this is over. Once we've got through this we can get through anything. I really feel that nothing in life will scare me after this and I'm going to live life to the full!   xxx ... View more

Thanks for the info and advice re the injections, Shi, pastamissus and drummerswidow. It doesn't sound so scary now. After your input I'm feeling all She-ra at the moment and think I'll opt to do them myself if its going to be awkward to get district nurse round!!    I'll check out that wig site as well Shi. I do have a wig through MacMillan, which I really like, but like you I wanted a couple so I could have a change.    ajorchid and catlady37 ...I think a lot of us are at that stage where we've got the hurdle of the first chemo done and now we're waiting for the hairloss.  My heads been tingling the last few days and then today strands have started coming out. Its horrible and despite the fact that I know its going to happen I'm gutted!   I'm sorry to hear about your abcess Ajorchid. I hope the antibiotics clear it up. Thats me, you and marycamille, as far as I know, who have had their second chemo postponed. Its disheartening. I've now added 4 weeks to my proposed finish date, just so if I do finish sooner than that it'll feel like a bonus!    Take care all xxx ... View more

Hi drummerswidow   thanks for putting my mind to rest re the injections. I think this whole expereince is going to make us all braver! Its at least a week away yet so I'm just going to focus on making this next week nice ...and also as productive as possible as I'll be waiting around for my next chemo! I hope alls well with you xxx ... View more

Hi all   marykamille - I'm so sorry to hear that its not going well dental wise. Usually dentists have appointments set aside for emergencies. Surely he could use one of these, as you would think that having chemo delayed is an emergency. Whilst I was at the dentist pre-chemo I heard the receptionist telling someone on the phone that the next available appointment was a couple of weeks wait but if they phoned and said they were experiencing pain they would get seen straightaway??? I hope you're not feeling too downhearted but I know its hard to keep on picking yourself up. Mine is also delayed for at least a week but I think it could go up to 3 weeks from what I've read. Its so frustrating with moving targets all the time when we just want to get the chemo over with and move on!!   drummerswidow - thanks for info re injections. Oncologist warned about bone pain. Is that why its better to do it in the evening or just your personal perference? Are they full size hyperdermic needles or just like the epi-pen? I think I may be able to manage an epi-pen type needle but not a big proper one! xxx ... View more

Hi all   Hope everyone is doing ok. Bad news for me yesterday. My white blood count too low so my 2nd chemo been postponed for at least a week. Also I will have to have the 5 lots of G-CSF injections after all susequent chemos. I know some of you are also having these injections. How are you doing on them? Do you do them yourself or does district nurse/someone else do them? I'm very needle phobic so don't think doing them myself will be something I could consider. I'm hoping I'm given the option of someone medical doing them!   Kc72   - thats really kind of you to share information about hair loss. I know it's imminent for a lot of us and the waiting and dreading it is the hard part. It must have been a traumatic experience to lose your hair so young. Its amazing that you've found such realistic wigs that your work colleagues don't even realise. Maybe you could tell them you're using the cold cap and you've managed to keep all your hair??  I looked on the Trendco site after you mentioned it. A lot of the wigs do look realistic and not 'wiggy'! Do you go for real hair or synthetic?    Rapunzel 2018   - my oncotype score was 31 which is the start of high risk, although my oncologist keeps referring to it as 'high intermediate'. Its confusing as it does look like 31 is high intermediate on the graph on my oncotype report but I've checked with Oncotype themselves and they confirmed it is high risk. I need to be brave and tell oncologist its high risk not high intermediate but it feels hard to disagree and I bottled out of it yesterday! Although it wouldn't make any difference to my chemo as he confirmed that due to my peripheral neuropathy I wouldn't be offered Taxanes. Its so random ..and annoying... in my 30's I got a  rare illness (Guillain Barre Syndrome) which left me with peripheral neuropathy and now 15 years later its impacting on the treament I can have for breast cancer. Oh well...C'est la vie!! I'm doing all I can do diet and healthwise to give myself the best outcomes.  Let me know what your oncologist says about your chemo regime though..and whether or not she believes taxanes would improve outcome. I really hope that  IVF is successful for you. It must have been so stressful to have it after your diagnosis. But its good that you know that having children isn't out of the question once this is all over.   xxx ... View more

Hi Rapunzel   Yes the bleeding has stopped thankfully, but thank you for your good wishes. It does get hard to keep up with where everyone is at, but its nice that its such a supportive group of women on here.   It must have been hard for you to be thrust into IVF on top of the breast cancer diagnosis. I looked into IVF in my late 30's/early 40's but decided to just let nature take its course and hoped for the best. It didn't work out for me kidswise but as it was my choice not to do IVF I was  ok with it. As luck would have it though I'd just booked onto a fostering/adoption information evening when I got my cancer diagnosis...so that option is now on hold!    I believe you said you are doing 6 x FEC, which is the same as me. A question to you and all the other ladies just doing FEC. Do you know why you've been put onto just FEC as opposed to FEC-T? I know I'm just FEC due to already having some peripheral neuropathy, otherwise I believe I would have been FEC-T. I've been doing some research into chemo drugs so curious into reasons why other oncologists have gone for Fec over FEc-T.   love to you all xxxx   ps - my hair has started prickling...yikes!!!! ... View more

Hi Jill   Thanks for your reply. Luckily the blood loss has now stopped. I think you're right that the mix of Tamoxifen and chemo just played havoc with my body!    xxx ... View more

Hi everyone   Thanks for all your good wishes. I'm pleased to say that the bleeding finally subsided last night, now just a trickle. And the accompanying headache left this evening. I'm finally feeling almost normal! Amazingly after all that blood loss my blood results came back ok today, only white blood count was low at 3.2 (the normal range being 4 - 11). But looking on the forum this doesn't seem particularly low compared to others.   I'm glad to hear your pain has eased now marykamille. But sorry to hear you now have dental issues. Its so scary all the problems chemo can throw at us. I hope it doesn't delay your chemo. I think we feel very similar about lack of support from Oncology. I'm just hoping that should I need further support I'm proved wrong and they're great!   Anyhow I know a few ladies had their chemo over the last couple of days so I hope you are all doing ok.    Wishing everyone a happy and restful Christmas. This time next year this will all be a distant memory!   Take care all xxxx   ps daffydilly - I don't have a picc line but I know some of the other ladies do so hopefully they'll be able to help x ... View more