@Jayne1966 Hello from a June 2018 starter who also had 4xT. I know you are getting Herceptin, but are you also getting Perjeta -- another HER2 antibody -- alongside your docetaxel infusions, before surgery? (I haven't been able to catch all the relevant details). If you are getting Perjeta, that might be the reason you have been prescribed 4 cycles of T (really, TPH). My oncologist explained that since the NHS only gives Perjeta before surgery for primary (non-metastatic) cancer, and since Perjeta often has very good results against HER2+ tumors, at my hospital they add a 4th cycle of TPH to max the amount of Perjeta patients get. So I had 4xTPH without having any lymph node involvement -- my pre-chemo SLNB was clear, no micro mets, so the main reason I was getting chemo pre-surgrey was to be treated with Perjeta.
Also, I thought it might be worth mentioning my experience in advance of getting your mid-chemo US results. I fully expected my mid-chemo MRI to show some results for all the misery I'd gone through, but the reading was "stable disease" -- meaning, the tumors hadn't appeared to grow, but they hadn't shrunk either. I found a way to interpret this as good news, because I really, really wanted good news after the rough patches of FEC, which weren't nearly rough as some people have it. But it's also true that some BC tumors respond to one cocktail of chemo (FEC) and other tumors respond to the other cocktail (T), and they don't yet know which ones or why. (They're doing a trial right now, the Rosco trial, to try to figure this out.) As it happens, my HER2+ tumor responded really well to TPH -- the IDC shrunk down to less than 1mm, and my very extensive DCIS shrunk down by half, which was amazing, gratifying news to get. And HER2 antibodies, particulary the combination of Herceptin and Perjeta pre-surgery, are often very effective. Some people even see a "pathologically complete response" -- no sign of cancer in the tissue removed at surgery.
I share this in case your MRI reading ends up being similar to mine. If you've had a good response to FEC, fab! If not, you're about to start the treatment that is specifically tailored to stop your tumor in its tracks -- hold on to that.
Nice to hear from you. Sorry you have been feeling so low, but guessed you would have been. It's a shame they have to delay it by a whole week when bloods are low, especially with you being borderline. It makes you wonder if a couple of days would have just tipped you over that 1.5. I had 5 injections first cycle and was supposed to have 10 last cycle because of previous neutropenia but only ended up having 4 because of palps. They are still saying they think palps are due to stress. Makes me laugh when they say are you feeling stressed. I've been told to have 5 this time. Totally get the dressing gown thing and look forward to seeing you in your wig. I think it's more noticeable to us and other people don't bat an eyelid x
Been feeling so low since finding out on Friday that my chemo wasn't going ahead today. Just been through the weekends posts on here and it seems quite a lot of us are feeling down at the moment! Today has been awful - thinking I could be half way through but instead I've another week to wait. I also called and spoke with a nurse on the chemo suite today and she said theres a chance that all of my chemos will be postponed by a week. Which really wasn't what I wanted to hear. That potentially takes me into May to finish. Its so cold and I've just been moping around with my dressing gown on over my clothes all day!! I then get annoyed with myself for feeling like this. I know I'll bounce back but each knock back is just that bit harder at the moment.
Dikat - your photos are lovely. It must have felt liberating to post them. I'll do the same once I start wearing my wig. Hair still here but really hurting at the moment so don't think theres long to go...its stressful waiting for it to go but as I still have a fine but ok covering I don't want to shave it until I need to. I know what you mean when other people complain about little things. I find my patience level is really low at the moment. In a way when people complain about everyday problems it makes me feel even more isolated as I feel that I can't always say whats worrying me as its too much for other people to deal with sometimes I think. Glad you got the go ahead for Wednesday. My neutrophils were 1.5 and white blood count was 2 and they decided not to go ahead. I can't recall....are you having the 5 x daily injections? xx
Rapunzel - sorry you're feeling low too. Like you say I think the weather does play a part. I'm sure if I was having chemo in summer I would have been sitting out in the garden reading a book today rather than mopsing round in my dressing gown!! I had a heavy period after first FEC. I did a lot of research on this and other forums and found that women who still had periods prior to chemo could have a period after their first 3 FEC's so hopefully its nothing to worry about but its a pain when you're already going through so much. xx
Marykamille - I hope today goes well. All of us have to be so brave through all of this process and I think wearing your wig out for the first time takes a lot of courage. I had a trial run and wore mine out when I went for a curry last week. I sat right in a corner and kept asking my ex (who has been my complete rock through all of this) if the wig looked ok...not a very relaxing experience for either of us!! xx
Jayne66 - glad today went ok. Enjoy your curry!! xx
Fluffysunshinepants - side effects wise from injections I had some bone pain around hips and lower back - but not too bad. I also felt more nauseous, had a heightned sense of smell and find that strong smells made me feel sick. I also had what I called 'heavy' palpitatiosn. It felt like my heart was thudding heavily nd slowly rather than the usual quicker palpitations. Hope you're ok xx
Lots of love to everyone on here xxxxxx
Well I've just scraped through to go ahead with my last FEC on Wednesday, my neutrophils are 1.71 and 1.5 is acceptable level. I know I should be feeling pleased but feel quite down. I didn't get to see my Oncologist, it was one of his team. I know it shouldn't matter but I like continuity. He said my lump felt the same size as it had been noted down the previous time. Panicking that the reduced dose means it's not working! He said they will do an ultrasound after last Fec and before THP to check on size.
Enjoy your curry Jayne, it's great you feel well enough to do that on chemo day xx
Is it the jabs that are messing with your sugars or the steroids. I dipped my urine earlier this month as thought I might have an infection. I was surprised to see the glucose bit was off the scale and I've never had any issues in the past. I read that the steroids can do this big time. I checked a few days after finishing steroids and I was back to normal, phew! Every little thing becomes a worry doesn't it! X
Pleased you've got your Fecs done Jayne. So is it 4 T's you're having? Think I've asked you this before, chemo brain, are you having Herceptin and Pertuzumab with your T. Hope FEC se's are kind this time xx
Hope things improve soon. With SEs we never know what will hit us next! Don't beat yourself up over not being so positive. All the posts show that everyone has good and bad days. We're a brave lot and we keep going and get through. My brothers, in particular, are amazed and keep saying they could never do it! (As if we have a choice)
We have sunshine today and it makes such a difference to me and my mood. Because we live high up close to moorland we often get mist/fog/grey/drizzle and the locals call us 'the cloud people'! Getting out is great because we often find that lower down the weather improves.
Today I am going to a small social gathering, my first one really with a small group (less anonymous than anything else I've done) since September last. I have got the wig, the make-up and done my best with clothes but still feel shaky and under-confident. Wish me luck!
Hi Jayne, it’s won’t be because you have a worse cancer, are you having chemo or surgery first? I am also on 4 x fec and 4 x t but my ER+ had escaped to a lymph gland so am having chemo first to make sure anything is mopped up and killed off before surgery. It’s all individual to us as patients and also to our oncs and hospital trusts. I am constantly surprised how different all our treatments are!
I’ve also had a major dip emotionally this time having finished fec cos at first it was Yay! I am halfway through but then realised oh no I am only halfway through and dreading T and another set of symptoms to get used to. I also intend to talk to my onc about the jabs this week cos they seem to mess with my BP and also my blood sugars which quickly normalise when they finish. I keep telling myself it’s all good for us and to make us better but 🤬 it’s a grind.
Keep going girls, you are doing great and we will get through this. Isnt it great to have each other on these forums, they really are a godsend x
Although I think I am doing better than most, regarding side effects, I am too going through a dip at the moment and I feel worn out. Last week I had my third FEC and three more Ts to go. Take care everyone and be kind to yourselves x.
Will be thinking of you today. You can do this....half way. Having said that I totally empathise. I don't know what's wrong with me, I find out today if mine is going ahead Wednesday but feel so anxious and down about the whole thing. Maybe its normal to have a slump around now, I just don't know....we are in this together though and we will do it. Lots of love xx
I hate the injections too. They seem to give me high blood pressure, racing heartbeat, lack of balance and nausea. Day after They finish I usually feel much better(not normal though!). I tried to get them cut from 7 to 5 but no luck. I guess they help prevent even worse problems so have to put up with them.
First time round I got some bone pain in my pelvic area, not too bad though. I also got visual disturbances, flashing light type migraines and headaches.
Second time I didn't notice the bone pain but still got the headaches and visual disturbances. I also started having episodes of tachycardia although not sure if this is injections or chemo. I found it better to have them in the evening around 8pm.
Everyone is different so I would discuss any side effects with your Oncologist.
Hope this helps x
It's great to hear from you and glad you have been able to offload about how you feel although I'm sorry you have been feeling so low. I can relate to so much of what you're saying. I was expecting to feel better with fec2, especially because my dose was lowered and although some aspects were better it seemed to bring a load of new issues. 10 injections was a lot, no wonder you're feeling down if you have prolonged side effects from them. I was meant to have 10 this time but stopped after 4 due to bad palps. Not sure if it was them tbh, so don't know what will be in store for Fec3! I can understand your anxieties about your hubby both for him and your concerns about picking anything up. Every time I hear anyone sneeze in my house, I'm shoving antibacterial into their hands. Like you, I also have a problem with my right arm, been there since Fec1 and not getting any better. I met a group of friends yesterday just for a morning cuppa. Was lovely to have some normality but started feeling a bit down at one point when everyone started talking about their upcoming holidays. I've had to cancel mine as it could be around October before my treatment is finished. I was meant to be in Italy for my 50th in July and had planned a couple of mini breaks with family and friends. I know I can do things at a later date but selfishly did feel a little resentment. I'm also struggling a little bit when people complain about little things. I want to say you think that's a problem!!! I know people don't mean to be insensitive, they're just going about their life as normal, they don't understand and like you say, wouldn't really want them to as would not inflict this on anyone.
It's so comforting to know we all have each other on these forums. I'm having bloods and seeing Oncologist today. Hardly slept as feeling anxious about pretty much everything. Well, will take my list of all the new problems I had this time and see if he can throw any light on anything.
All here for you Rapunzel2018 and take care everyone xx
Sorry I've been a bit on the quiet side lately. I kept following the thread/s but didn't really feel like chipping in. Have been a bit low after the 2nd FEC and rather tired at times. Not sure why. Maybe because this time round I had to deal with even more steroids and 10 injections on top of everything else - and the accordingly prolonged sleep deprivation/additional SE (from the Filgrastim). My right arm has been hurting, too - I suspect unhappy veins but haven't consulted anyone about this, yet. Also, my hubby came down with yet another terrible cold only a day or two after my chemo (he suffered with one for most of my first chemo cycle) - I was worried about him, and of course the risk of my picking up his cold bothers both of us. Yesterday, completely out of the blue, I got my period (and a heavy one at that), too. Hadn't expected that all, and I'm not sure I'm happy about it (probably not). Did get out of the house finally this Friday and today for the first time, and I notice how much I miss just being among other people. I'm keeping fingers crossed that I'll be able to make the most of this coming week. I feel with everyone here who is low, doesn't feel like being 'strong' all the time, wonders about how other people look at you (when you're out wearing a wig or a headscarf). It doesn't help that the days are still rather short, the weather is often dull, and even if it is nice outside, if one's energy levels don't allow you to do much, it's not ideal. Sorry for not being more positive at the moment. I promise a more uplifting comment as and when I can manage it. Thanks to everyone for continuing to post on this forum. It is so helpful - makes one feel less alone - because even the people right next to you simply don't know what it really feels like to go through this, as much as they may try or want to understand. If I'm honest, I wouldn't even want them to, because it's not an experience I'd want to inflict on anyone I'm fond of. All the best to every one of you! xxx Rapunzel
Thank you so much for sharing these photos!
You look absolutely beautiful in all of them!
I think I’ve missed quite a few posts lately as I am still a bit confused about the numbering system on the threads! Apologies to all you lovely people.
Jencat many thanks for that info; it is encouraging. My oncologist told me that 3-4 women in 100 in my position benefit by that hormone treatment regarding recurrence. I dismissed that, for me, as negligible compared to the risks to my jaw bone. He wants me to have the treatment because of the risk of osteoporosis afterwards as I am in the older age bracket and Chemo is not kind. So we are two different cases really – good to be treated as individuals anyway!
Jayne1966 Hope you still get that weekend of luxury on the South Coast. That’s something to look forward to. I am inspired to look into a shorter break and be independent about it. You’re right - my oncologist need never know! I still wear my wig cap underneath my wig although I have no hair. It feels better. The wig can slip about a bit though – have to be careful when removing hats, if you wear them.
Drummerswidow I know exactly what you mean about ‘looking well’ from others.(an earlier post of yours). I think they almost feel they must say that and maybe you know you actually don’t look as bad as you feel! I was looking at a fairly recent photo of me and my husband the other day (before diagnosis etc) and comparing to now and I actually decided I looked better facially now than I did then! Maybe it’s just the wig!
Dikat your wig is great and you look absolutely lovely! I agree with what you say about not wanting ‘pitying’ glances. How inspiring you are, too. So sorry that I got your name wrong in one of my posts – blurred vision and keyboarding I guess!
Daffydilly I’m on an emotional tipping point a lot of the time. I gave up all my social activities after diagnosis in late September of 2018. I had to deal with it and all the implications myself and alone first, although husband has been and is great. I am struggling now to gradually pick up the pieces again and hope to go to two social gatherings next week. Wish me luck and courage! I just don't want questions and I don't want people looking at my chest to see if they can work out which one got the chop, or at my head to weigh up the wig!
Hugs and best wishes to everyone
Hi maryKamille, I'm so sorry about your dental problems and I hope you manage to get them sorted soon. I did know that Zoledronic Acid can rarely cause jaw problems and if I need any extractions or major dental work doing it has to be done at the hospital incase of bleeding. I think I might have been in a bit of blissful ignorance because my onc told me of the advantages of having it and didn't say much about the disadvantages. But I did also see a Maxifacillio Consultant at the hospital about a problem with my gum and he said to look at the bigger picture and in my case, it was better to have a problem with my gum and still continue with Zoledronic Acid as apparently although it's a bone strengthener, recent studies in the US have shown that it can help stop recurrence x
I already had dental problems after first Chemo and I had my teeth all checked and hygienist 10 days before I started Chemo to make sure no problems! My oncologist is noting my dental problems now and I am hoping he will find me a replacement hormone therapy as Zoledronic Acid is in rare cases damaging to the jaw bone and I obviously have a weakness in dental area.
My 2nd Chemo produced sore and swollen gums, too. I am coping with that but it's still not completely gone. I am so careful with dental hygiene and fearful of that hormone treatment, especially as my dentist is dead against it - I had to give her the paperwork to note on my file and she nearly exploded!
Your wig looks terrific. Did you have it trimmed to fit you or is that as you bought it? I had an appointment to have mine ‘customised’, but chickened out and cancelled!
First injection went ok. So far feel better this time than last. Nurses suggested splitting steroid into 2x2 instead of all at once so maybe that has helped as well. Fingers crossed for a better round, but each reasonable day is a bonus.
Sorry your feeling low. I’m also finding it a very emotional journey - quite teary at the moment but find visits from family help as it gives something else to focus on for a while. Hope you manage to enjoy seeing yours.
Thank you so much for your lovely comments and to your hubby too. I am so pleased its given you inspiration. We are all in this together xx
I forgot to say Daffydilly that I hope your injection goes ok this eve and it doesn't cause you any pain x
Daffydilly, have you got a liner under your wig? I think that they're meant to help. I think my wig fitted better once I hadn't got any hair x
Hi Drummerswidow, I'm so sorry you're feeling so low x It's hard work trying to put on a cheerful front, could you postpone your family's visit until you're feeling a bit better? I think I've sent to a pm! Shi from the Oct '17 has explained to me what to do xx
Sorry you're feeling down Drummerswidow. I really hope you're mood lifts a little tomorrow but I'm sure your family will understand. It's not always possible to put that brave front on and being tired doesn't help. Vent on here as much as you need to, we are all here for you xx
having a bad time still. Tried to work today and ended up crying in a clients house. Came home and went to bed. I’m very tired and tearful. Got family coming tomorrow but in truth I don’t want to see anyone. Don’t know why but I’m struggling mentally at the moment. Fed up with being cheerful in front of everyone
You look lovely. Very brave. I haven't got myself a wig yet. Well done you. xxxx
Thought I would be brave and introduce myself. I've not been out in public or answered the door without my wig. I've worn a scarf once on one of my visits to a&e but vowed never again as struggled with all of the pitying looks. I don't suit hats and didn't feel comfortable in my wig at first but getting used to it gradually. Xx
Unfortunately it was the one who said it had to stay at 7 - although blood tests were ok, levels had dropped each time so I guess that’s why. It can’t be more than 7 can it?!! 1st injection tonight so guess tomorrow will be worse
Have cold capped each time but hair very thin and straggly now so braved a wig today. Still seems to slip a bit- maybe because still some hair under it?
Yes I'm losing weight too and I don't have any to lose. It's the one thing I hate the most, even more than my bald head. I lost about 10lb when first diagnosed due to the stress of it all so was only 8st then...I'm 5ft 5 inches. After first chemo and being in hospital etc. I went down to 7st 10. Managed to get back up to 7st 13 on chemo 2 day but then over the next 10 days ended up dropping 4lb again! Managed to claw a few pounds back this week so currently 7st 12 but have next chemo on Wednesday so guess I will drop again. Due to this, I'm not eating as healthily as I should because I feel I need to try and get the calories down me. My bum has disappeared and legs too thin. When I was in hospital they made a dietician referral but said it would be a while to wait as they are so busy! I've tried to take complan and the ensure build up drinks but I have ibs/diverticular disease so find they upset my stomach. I've gone off tea, been drinking camomile to help with settling my stomach. Xx
Hi maryKamille, I'm from the Oct '17 thread and I'm having Zoledronic Acid. I had infusions of it with every other chemo (and will continue to have it for the next 2 years. So far I haven't experienced any problems) and just wondered if you could do the same so that you're started on it before you begin radiotherapy and can have the holiday? x
Drummerswidow, I hope you're feeling a bit better now x I would have replied to your pm, but I haven't worked out how to find them yet with the new format! x
Hi Daffydilly, is it the chemo unit or the your onc who have said you've got to have 7 injections? I had 5 for FEC, but 7 for T and I'm sure it was the injections that made me feel worse. (My onc said it was chemo se's, but I'm not so sure) Anyway, I managed to persuade my onc to 'only' have 5 injections again for the next two T's x
The last thing you need is guilt! Your two obviously miss the mum of old, but they will adjust and probably already have. Sometimes it does feel that we are being punished though, doesn't it?
Thank you for the tips about toothpaste, I will look into that. Have a child's brush and have been using Sensodyne, thinking that keeping to normal toothpaste might be a good idea. However, Sensodyne might not be quite kind enough and I do get a dry mouth which makes the gums feel 'rough' not smooth like they usually are.
As to the chemical smell. Yes, I've noticed that, too! I will up my water intake.
My husband is great and does loads of things for me but I feel that I have to do some chores myself as I need a routine to keep me going and not brooding over it all. He can't cook, unfortunately. Only joking as I am perfectly capable of doing that most of the time and I want him to keep to a good diet.
Is anyone losing weight? I've lost a bit and I am small anyway. I think I'm eating healthily but not so much of it as before and less interested of course during even slight nausea times. I've gone off coffee, too. XX
So sorry to hear about your delay. I know how it feels because I had that break for my tooth extraction and when you have marked up the calendar and are awaiting that mid-way point, let alone the end point, it's horrible when it stretches further forward. But you need to be fit enough to take all this and it does mean they are looking at you carefully. We are not just one of many, they do seem to see us individually. I guess they have to with these drugs.
Hope you have a super birthday lunch! Don't stint yourself!
Yes, I have come to terms with my oncologist and realise it's all about my welfare really. Not that I might not moan at a later date!
Hugs and every good wish to you.
Oh no, sorry about your blood results. Like you say, in addition to all the physical stuff, these knocks and setbacks have such an effect mentally! We know that we need to be at full strength to cope with our next cycle but we end up centering our lives around these dates that are set for us. Enjoy your lunch and belated birthday celebrations and try and enjoy a week of getting stronger with some nice things planned.
Take care xx
Sorry to hear you have been feeling so tired. Do you have anyone to help you?. I am so lucky that I have a husband that takes care of housework, shopping, cooking etc. As I've been good for nothing most of the time since chemo. I was feeling sad a couple of days ago and found myself apologising to my 14 & 17 year old for being such a crap mother at the moment. Of course they said I wasn't but it doesn't stop you feeling so hopeless. Damn cancer, you sweep in from nowhere and drop a huge bomb that makes a huge hole in so many people's lives! Regarding your mouth problems, don't know if it would be any help to you but after suffering very badly with my mouth first time, I used biotene toothpaste and mouthwash with a soft children's toothbrush after cycle 2. If nothing else, the biotene helps to keep your mouth moist, it was loads better this time. Bicarbonate and salt are probably just as good though. Funny you should mention the flatulence. My hubby says he has never known me so audibly windy. It does take a good few days to get the bowel movements back to normal after the chemo. I try to get 3 litres of water a day down in those first few days and take lactulose. Sorry if this is tmi, but my bowel movements smell extremely chemically for about a week after. Your philosophy of taking one step at a time is a good one and make sure you offload on here whenever needed. Take care x
Just had call from hospital....white blood count and neutrophils too low again .....so chemo postponed by a week again As I had the injections this time around it looks like they may be increased on next cycle....more needles woohoo!! This whole journey is so hard physically and mentally. You try to get yourself psyched up and mentally ready and you also get practical aspects in place ready for chemo on a set date and suddenly its not happening. So disapointed. luckily a friend is coming round shortly and we're finally going out for my birthday lunch - postponed from my birthday as it was the day before chemo started in December!
Good to hear from you Marykamille. Sorry you're still having mouth issues. Sounds like your oncologist is finally being more on the ball now though? xxx
You are not a wimp! None of us are. This is a unique experience in our lives and it really does 'change everything'. Apart from all the physical aspects, I don't know about you and others, but I am very emotional a lot of the time and that tends to make me think I am weak - I thought I was a strong character until now! So, that adds to it all. Don't undermine yourself, and anxiety is absolutely natural I would say. Take care and give yourself a pat on the back for your endurance and sheer honesty!
Hi Dikat and everyone else and good wishes and hugs for you all.
I am catching up again after a fatigue period which is beginning to hit me quite hard now. I do housework, cooking, ironing etc and shopping, of course, but slowly.
It seems to be PICC lines at the moment - pros and cons. I had a different nurse for my 2nd Chemo last week and she had no problems with cannulation. They tell me to get very warm beforehand and wear gloves. Also, she brings me a bowl of hot water just before to help the vein. I can understand that if it is difficult or painful & you hate needles that it could be very traumatic.
My oncologist is going to discuss the 'holiday possibility' when we meet next before the 3rd Chemo. It will be half-way through this horrible course of treatment! I've had surgery before Chemo and am meant to have a clear month before RadioTherapy. It is awful this concentration on C all the time, endless scans and constantly checking to see if your side effects are on the 'list' and therefore OK. We need to try to unwind and get away from it all.
But my oncologist is not keen because I had dental problems from the start & he wants me to have this dangerous hormone therapy (Zoledronic Acid, can attack jaw bone) which I think he wants to start before the Radiotherapy, and he said (via Secretary) that it is all a bit 'tight'. Anyway, I have had red and swollen gums which gave me soreness and some pain eating from day 5 this time, so it's definitely a weak area for me. I have used bicarbonate of soda and salt dissolved in water as a regular rinse during the day and I think it is pretty much sorted now.
Apart from fatigue and nausea starting up a bit - I was OK at the beginning - I am not doing too badly. Finding it hard to get the constipation/diarrhea balance right. It seems Laxidol is always followed by Immodium! Also, terrible flatulence! Anyone know what to do about that?
They are going to sort me out for Radiotherapy soon now - you have to be set up with your position for it and they do 3 or 4 tattoos to mark you up ready for when the time comes.
I am trying to take it one step at a time and find something nice to do but most things require a bit of energy and that's lacking at the moment.
Keep smiling everyone if you can.