Hi Lisalou and everyone
How are you? Lisalou - hope you enjoyed Downton Abbey with your daughter - I am hoping the DVD will be out for Christmas and it will be our film to watch Christmas afternoon. Sounds like its the right kind of feel good factor!
I am OK - day 5 which seems to be my worst - had a bad night with nausea but managed to get it under control and get some sleep though feel a bit spaced out today. However, positive thinking is the way forward so I am up and about and getting on with things rather than moping about like I did last cycle.
Blackcat - how are you getting on with the new drugs? Better or worse than the EC? Take care all xxx
Hope your feeling ok after your latest treatment?!
I’m slowly feeling like I’m back in the land of the living (day7) stomachs a bit tender today though.
Hoping to get out tonight to watch downtown abbey with my daughter so just having a chilled out day.
Hope everyone’s ok.
So, third and final FEC administered today and now doing it worst (I hope) to any random cancer cells that might be floating around. Determined to keep positive and crack on through the Docetaxil - I am assured that nausea not so bad with it which is a massive bonus. Also only 20 mins of cold cap after treatment compared to 1.5 hours with FEC.
Hope you are all well at your various points of treatment and keeping dry in this weather. We live close to the Severn (not at risk of flooding though) and it’s very high at the moment! xxx
Jencat - it sounds like we are having similar treatments (although I'm Triple Positive). I've been having Zoledronic acid with chemo every 6 weeks (so every second chemo cycle) and will carry on for 3 years - along with Herceptin and ptzumamab. I'm 59 and post-menopausal.
Spottycotty - I think you're probably right about it being more appropriate for post-menopausal women. You've obviously been doing some research, but I found this useful (although I can't see that it mentions who it's suitable for - so still may be worth mentioning to your docs).
Wolvesgirl glad your meal out went ok I do think it’s more us that feel conscious of it rather than other people even realising we have one on. Glad your feeling more positive too! I’m 5 days post EC now and feeling ok just very tired. I am finding that these first few days after chemo I feel a bit down and less positive then as I start feeling more myself I get my mojo back and feel very upbeat and positive again 💪🏽.
I too am TN. Everyone’s treatment plans are a bit different aren’t they. I haven’t had surgery yet. I was offered to have it before chemo but I said whatever they thought was best and I think they thought chemo first to blast as much of it away as possible.
its a lovely day here today so going to drag myself out for a walk.
Morning Wolvegirl, pleased to read that you're feeling better today x
Re wigs, I think it's often us feeling self-conscious wearing them at first, but actually other people can't tell we're wearing them. I remember a neighbour commented on my lovely haircut when I wore mine and she didn't even know I'd got bc so had no idea that I'd be wearing a wig x
I think Zoldronic Acid is only for post menopausal women, so probably not suitable for you.
No, I haven't been having chemo for two years, I think I must have worded my message incorrectly! I had Z A alongside my chemo which finished in March '18, but I have to go back to the chemo unit every 6mths for an infusion of Z A until next Summer x
Hi Spottycotty and everyone
I just wanted to check I had told you the right thing about the biphosphonates so I checked the info leaflets on here and Cancer Research UK. Both confirm its used in post menopausal women which makes sense I guess.
Thanks to all for support re the wig and my supper with friends I haven't seen for a while last night. Both said how nice my hair looked and asked what I had done to it. Rather than coming clean, I mumbled something about covering up the slowly emerging grey with highlights! If they suspected anything they kept it to themselves.
Off for bloods today prior to last FEC tomorrow. Feeling very positive about it all today which is good after how down in the dumps I was last time. Think I am back to my normal self and am determined to keep it that way. Take care all xxxx
im 45 and pre menopausal so by what I’m reading I don’t think it will be relevant to me?
Have you been having chemo for 2 years?? 😨
Hi Spottycotty, I'm also TN. I started having Zoldronic Acid whilst having chemo, every other one and then for 3 years afterwards. I think you have to be post menopausal to be able to have them. (I'm 60 now and 58 when I started chemo) I'm not sure how old you are, but if this applies to you it might be worth talking to your onc about it x
Ahh, I see, thanks Wolvesgirl
mini mad, I’m halfway through treatment now, I’ve got round 4 of chemo next week.
I hadn’t heard of this before, I like to know what I can in case anything is relevant!!
These drugs are used to treat osteoporosis generally but as I understand it there is evidence that they may help prevent spread of cancer to bones. I don’t know what the criteria are for having this but it might be that you have to be post menopausal which I am (I am 61). I was also young when I became menopausal so it might be a good thing for me to have anyway. The oncologist said to me you can have tablets or a twice yearly infusion. He also said three years to me. We are going to discuss it when I have finished chemo but it seems a good idea to me. Hope that helps xx
the best thing for you is to google it or take a look on the Breast Care website.
you say you're TN, are you having treatment now ??
mini mad xx 💖💖
I haven’t heard of he drug you are talking about, could you tell me more please??
im TRiple negative too
i am having Zoledronic Acid infusions every 6 months for 2 years.
i've had one already n next one is January 2020.
i did try the tablets but they gave me horrendous heartburn, so now having it through IV.
I think they offered it to me because of my age (69) and i've had TNBC twice in 2 years.
do whats best for you. Mini mad xx 💖💖
Hi again Mini Mad
Sorry forgot to add that biphosphonates as well are probable - another 2% benefit is worth having I think. Don't know if anyone else is considering these? If I do have them I would prefer an infusion every six months rather than the tablets but need to consult the dentist first anyway. xx
Hi Mini Mad
So pleased you have got plans for a lovely holiday coming up - that is something to look forward to as the days get shorter and darker. Good news re the hair too - all signed of return to normality.
My treatment plan is FEC-T, three of each, so this week will be the third FEC and then onto the T. To be honest I have struggled - I had an admission on cycle one and then really hit the grumps on cycle two to the extent that I decided I would stop chemo. Had a long chat with the nurse who suggested I had at least the last FEC so thats what I am doing this week. Of course, now I feel fine I can't imagine why I was so down and I really want to carry on with the whole treatment! So, my plan is to see how I am on cycle three and then decide but I do want to make sure I give myself the best chance now so I will probably grit my teeth and get on with it. Then onto 15 radiotherapy sessions plus boost doses so it will have had everything thrown at it. As the whole cancer has been removed with wide margins and clear nodes I think that is as good as a position as I can get.
Its been more challenging emotionally than I was ready for to be honest - I have always thought of myself as pretty robust and able to face anything but I seem to be making much heavier weather of it than you and all the other lovely ladies on here who are inspirational with their determination to get this done. xx
yes i finished my chemo 5 weeks ago.... huge relief and i dont miss my hospital appts one bit 😆😆
think i have a little more energy now but gonna be a long haul....just booked a weeks holiday at end of November to Ferterventura for our 46th w/ann, just gotta watch out for the sun 😉😉
my hair has begun to sprout !!! Got about 1/2 inch all over, so still wearing my lvely scarves until it gets longer, then i might go ' natural '
sorry, chemo fog.... what was ur treatment plan for your TN ??
Hi Mini Mad
Me! It itches when I get hot so I haven't been to the gym or anything as I don't want people there to know about the treatment (my issue sadly) but if I go for a walk or something its bliss to take it off. Just feel sorry for my husband who has to look at me with thin, lanky hair although he doesn't mind.
How are you now as I think you have finished your chemo haven't you? I have struggled but am determined to get through it and beat this TN thing!! xx
The only downside I have experienced is I get a bit hot - a bit of energetic hoovering and my scalp itches a bit but it soon wears off. I must admit by the evening its nice to get air to my head! I have another wig which was quite a bit more expensive (I paid for one) which I don't wear so much as it is a bit OTT - I think I will take it in to get it cut as it is better quality. Re the collar - mine is short so I haven't found the same as you. Like you, I am not sure that anyone has really noticed and I am used to it now. Even went out to walk the dog in windy weather and felt pretty OK! Thanks for getting in touch xx
Your experiences are the same as mine. One person in the village said that my hair looked nice last week - she is a hairdresser and I can't make up my mind if she sussed it or not! Anyway, I don't think she would say anything. I had tea with a friend last night who does know and she said that it makes me look slightly different but eventually after much laughter we decided it was because it was tidier than mine!!
The people I am meeting tonight are ex work colleagues so probably won't feel they could comment anyway. Have a great day - term at UoY has restarted this week and I am so happy to be back at the books again!
Same for me really - those that do know say that the wig is exactly like my own hair as I am fortunate to have thick hair anyway. I have two wigs - one is a bit OTT and I am not so comfortable with that one, might get it trimmed a bit I think. I do take it off in the evening when I have showered but I couldn't go out with my extremely thinned hair! I am hoping that the cold cap will promote quicker regrowth even though I have lost most of it and I have read in other places that people have seen their hair regrow whilst on docetaxel which I move onto soon.
I will let you know if anything gets said - I hope it doesn't but I will deal with it if so. Thanks for getting in touch xx
You are right, I would hope that they won't comment out of sheer politeness
Wolvesgirl, if it’s close to how you hair was I doubt anyone will notice or they might think you’ve had a new style. No one could tell mine were wigs people just thought I’d changed my hair (did that loads with my different wigs) it’s just to us it feels like we’ve a cat sitting on our heads, but to everyone else it just looks like hair honest 😘😘💕💕✨✨Shi xx
I also have a wig and do wear it out for special occasions.
i do find it very hot and scratchy even though i wear a scull cap under it.
i get home, take it straight off and oooh the bliss of scratching my head 🤪🤪😆😆
Anybody else feel the same?
mini mad xx 💖💖
I too wear my wig all the time when out and I’m starting to get used to it now. The only bit that’s getting on my nerves and I don’t know if anyone else is getting this is were it sits on my collar it obviously doesn’t sit like normal hair and getting on my nerves a bit. Apart from that though I don’t think those that don’t know even notice. Iv been into work a few times and Iv even had people saying how lovely my hair looks. I had it cut shorter once I knew it was going to fall out then got a wig very similar apart from the fringe. Those friends that do know said how real it looks. I’m still quite conscious of it but getting more used to it now.
Hope you have a lovely night out 😘 xxx
Like you, I wear my wig all the time when I am out, and have got used to it as being my “hair”. It does actually look pretty much like my own hair used to be, although the fringe is cut in a more choppy style. Some friends/neighbours/former colleagues I have bumped into (who don’t know about my diagnosis) have said that they like my new haircut and have not asked any questions about whether I am OK or whether something has happened to my hair, so I presume that they have not guessed I am wearing a wig. I was also at a work-related event a couple of weeks ago where nobody knew about my diagnosis (the people there were colleagues from a different office, who I only see every few months). Nobody made any comments about my hairstyle at all, and it was nice just to be able to have an evening without any discussion about cancer/chemo etc. I guess that it may depend on how well people know you, but I would presume that most people will not notice, or if they do, will not make any comment about your hair.
I hope that you enjoy your evening out!
I have still got my hair although it is quite lank now, I have been wearing my wig to go to nice places.
my friends know about my treatment so their initial reaction was suprise when they saw my wig, they insist that had they not known me previously, they wouldn’t know at all.
The thing with my wig is that it is actually better and thicker than my real hair before it shed so my family and friends can tell, strangers in the street would never know.
I nipped to work yesterday to drop hubby off and saw a colleague, he hugged me and he touched my hair whilst doing so, I felt a little awkward so I told him I was wearing a wig and he asked if I was serious and insisted he couldn’t tell.
When you’re with your friends tonight and if they do suspect your hair is a wig, you would like to think they wouldn’t say anyway???? Bit rude if they did?? It must feel like a lot of pressure on you keeping all this to yourself although I do understand why you have, sometimes it’s lovely to just talk about normal things!!!
I hope you have a great night and your worries are unfounded. Let us know how it goes.
Thinking of you xxx
I meant to ask about people's reactions to wigs for those of you that wear them. I wear mine all the time and am almost at the point of forgetting its a wig not my hair. I do wonder whether people that don't know have noticed - no one has said anything - have any of you had anyone ask you? I suspect people won't ask but just wondered. I am out tonight with a couple of people I haven't told about the cancer and don't really want to - I am hoping I can get away with it as it is just nice to be with people who don't know and therefore its not the "elephant in the room". xx
Spottycotty, on the t, it’s softer on veins and everyone is different on t, some are still botty blocked and others need Imodium and some were just fine, there is no way of knowing ❤️But know it will be fine 👍😁 for bone pain this is the Epsom salt bath time, it’ll help a lot. You can get jaw pain from it too but as always anything you are unsure of please phone your unit ❤️💕💕✨✨Shi xx
Wolves girl ❤️Third one already 💪💪💪yet to you 👍👍 your arm will ease off on the t, it’s softer on veins. Get them to soak your arm in warm water in sharps bucket and get them to put heat pad on your arm while they do the fec it will help 👍💕💕✨✨Shi xx
Good to hear everyone is pretty well and managing side effects. I am feeling fine - third FEC on Thursday so doing a few things and seeing people before the dreaded chemo coma hits at the weekend. Am determined not to let it get to me this time so I can continue as planned with the three docetaxels afterwards. Really need to get a grip so have things to keep me entertained during the down days. It’s interesting hearing about the different side effects that you are reporting and I have to say that not being nauseous will be a bonus! I still have a sore arm but it’s bearable and I have about 15% of my hair which, I am sure, is growing! Weird.
Spottycotty - hope you have a great birthday and go somewhere lovely.
Take me care all xxx
Hi Spottycotty and everyone else.
iv not been feeling too bad thank you. Not sleeping great even though I’m feeling so tired. The steroids are keeping me awake. An achy arm still but seems to have eased a bit from last week. I’m Currently sat with a hot chocolate and a heat pad on my arm 😆. Managed a little walk to my local shops today, albeit a woozy headed one it was nice to get some fresh air after being inside most the weekend. I do find the EC does make my head fuzzy 🤪 been a few comedy moments of me saying random things and also my 18 year old daughter looked at me slightly worried as I sprayed air freshener onto the work top and wiped it down instead of antibacterial spray! Anyway hoping I can muddle my way through this week somehow.
Nice to catch up on how everyone is.
Hope everyone’s feeling as well as possible 😘 xxx
Thanks for your reply. Yes, I agree that Days 5-9 have been the worst on the Docetaxel, particularly in relation to the bone pain, and that everything feels better once the filgrastim injections are done. I am on Day 12 and now feeling pretty OK, although still having occasional episodes of loose stools/speeded up digestive transit for which I am taking the loperamide my unit provided.
The team who are looking after you sound similar to mine - I have a consultant oncologist, a consultant surgeon, and a breast care nurse who links everything together. I had an initial appointment with the surgeon in July, at which point she booked me in for an appointment on 28 November to discuss the surgery. At this point I should be just over one week after my final chemo session, if everything goes to plan. I think that I will only get the surgery date on 28 November, but I understand that it should be in December and that it will probably be about 4 weeks after the final chemo. Given that this takes us to Christmas week, though, I’m not sure what will happen! I would ideally like to get the op over before the end of the year, as I am supposed to be going back to work at the start of February, but I will just have to go with the flow. Hopefully we will both get our dates sorted out in due course, and will be able to plan better for Christmas.
I hope that everyone on the thread is well, and enjoying the evening.
I see that you will be having your first Docetaxel next week, and I’ll be having my second one (plus the Herceptin and Perjeta) next Wednesday. I felt exactly like you before my first one, as I had got used to the ups and downs of the EC, and knew roughly what the treatment cycle would bring, but was apprehensive of the new regime and side effects.
I am now on Day 12 after the first Docetaxel, and am feeling OK but have had a few points where I have had rough side effects over the period of Days 5-9. Nausea/sickness have not been a problem, and I really hope that you will not have them either - my chemo unit told me that Docetaxel is less likely to produce these effects than EC, but that it does tend to hit the digestive tract lower down in the form of diarrhoea (they gave me a box of loperamide as a precaution). I have found that they were right - I have had a few bouts of loose stools which have been a bit annoying as they are unpredictable. The loperamide has sorted them out, though, although I am not sure how long through the cycle I will need to take it (I’ve been taking 1-2 tablets per day over the past couple of days). The other side effect which I have had is the bone pain, which hit around Day 5 in the middle of the night and was quite bad, but which subsided after I took paracetamol. It then was OK for a couple of days, and came back in the night around Day 8. It seems have gone completely now, particularly as the filgrastim injections are finished. I haven’t had a woozy head feeling at all with the Docetaxel, and seem to have felt less physically tired than on the EC, so some things have been better.
Like you, I am hoping to enjoy the next few days and get out to a few places with friends before the next treatment cycle starts. I hope that you have a good time meeting up with your friends, and that Docetaxel is kind to you!
Awww Em, there’s nothing worse than feeling sick is there! Really hope Shi’s advice works for you 🤞
Starting to dread next week already, I’m starting on docetaxol so feel like I’m starting from the beginning, I haven’t got any idea of what to expect really, I know it makes your bones hurt, I’m hoping that I can swap the nausea for that awful Side effect, I’ll be gutted if I get both!! How is the sickness for everyone else on that drug?? black cat??
Anyway, I’m going to enjoy this week, meeting friends etc while round 4 is looming in the background.
Realky hope everyone is well xxxxx
Thank you Shi will definitely ask about that...the sickness really gets to me, it’s like a scene from the bloody exorcist, so anything to make it a bit easier xxx
Em have they tried you on akynzeo? I had to take that 1 hour before chemo then after meds were metrochloptomide (excuse my spelling) you’ve mentioned it below. Might be worth asking 😘it worked well for me that combination sending 👭👭💪💪💪💕💕✨✨Shi xx
Hi Blackcat (and everyone else)
Good to hear you're not feeling too bad on the Docetaxel. My worst days each time have been Days 5-9, so hopefully you're tolerating it better than me (unless it's the Carboplatin causing issues in my case). I seem to feel much better once the filgrastim injections are done each time (7 days seems forever whilst I'm doing them!).
It certainly does sound like we're on very similar treatment paths - I'm waiting to hear when I'm likely to have surgery... there's a team at the hospital I go to, and I've been allocated to one chemo consultant; one surgeon; one breast care nurse (not that she has done anything); and others, so I get passed around depending on which part of the treatment I'm on at the time. So, the chemo consultant will refer me back to the surgeon after 5th cycle and it will then be decided when the surgery should take place. I'd like to know sooner, really, although having the final chemo date - which I was only given last week - will have to be enough for now. Obviously I'd like to plan for Christmas, but it sounds like I'll just have to wait until early November to find out.
Best wishes to everyone for a relaxing Sunday and thank you all, once again, for sharing your experiences.
Hi lovely ladies,
love the chemo coma description....so so true! Happy birthday spottycotty for next week have the best time celebrating!! Love the days when we feel normal!
had my 3rd FEC on thurs so just coming round, I seem to be really sick (on an anti sickness patch 48 hrs in advance, emend, ondensatron, dexamethasone, metoclopromide and the injections) and still horrendous...but not hospital admission horrendous like 1st time! Nurse said they can’t really do much more for sickness other than sedate me for 3 days 😳😳😳 no thanks!!!
anyway we are really getting there ladies, u r all an inspiration to me and helps to keep chin up that we aren’t alone 💖
love to all xxx
Glad it went well Julie, hope you sail through the week to feeling well again xxxxx
Im at mums for the weekend with the kids so we are all getting spoilt and being constantly offered food!!! Hahaha!!!
looking forward to next week as it’s my ‘good’ week, lots of coffee and lunch dates then it’s my birthday on Friday and we are going away somewhere apparently...can’t wait!!
Have a good weekend everyone xxxxx
Thank you ladies 😘
weathers been horrendous here too so definitely a curling up on the sofa weekend. Iv actually transferred myself to bed now to watch tele so that’s me set for the night. Slight nausea and starting to feel verrrry tired now so most likely be asleep soon if this sickness keeps alway 🤞🏽
I think your so right about the nurse Julie! I was actually going to say I don’t want you to give me it if she was there today 😂😂 she wasn’t though so all was good. The nurse I had today was so lovely 😊
I’ll go off into my “chemo coma” now and update you all soon.
Thanks again for all your well wishes 😘
Well done Lisa. The nurse you get does seem to make all the difference, doesn't it? Glad to hear another one over.
I’m so glad to hear that you had a better experience with the infusion this time, and hope that the side effects stay at bay. Cosy on the sofa is the best place to be on this rainy day - it’s where I am now too, with my two cats curled up snoring beside me. Take care of yourself and I hope that the next few days go smoothly. Another treatment down is a great achievement, and one more big step towards the end of chemo!
So pleased you had a better experience Lisalou and hope that your recovery from this one is as SE free as possible. Its a weekend for snuggling on the sofa I think - its bucketing down here at the moment.
Have a good weekend all
Thank you Shi once again for your advice.
Im all done and back home now. It was all fine the nurse was lovely. I went over my concerns and she said the message had been passed on and they’d kept my meds out of the fridge once they’d been brought up and she put it through a lot slower than the nurse last time and into a different vein.
Another one down.. so one more EC to go in 3 weeks then on to paclitaxel.
Im feeling ok at the minute but it’s been about tea time when Iv started feeling sick the last couple of times so I’m just waiting for that to kick in. Pjs are back on and all cozy on the sofa.
Hope everyones ok.
Lisaloo, get the arm in sharps bucket of warm water, get the heat pad on arm while they do it and remember it’s dr chemo, the extra doctor on the inside with its light sabre zapping power 👍😁😁💕💕✨✨Shi xx
Spottycotty that must of been awful for you! Not a nice experience at all. Thank you Shi for the advice 😘 I am getting quite anxious about tomorrow now with my sore veins 😫 the ward sister assured me that when the medication is brought up it will be kept out of the fridge so it’s not as cold as I’m in at 10 and it’s only brought up at 9.. and she’s also having a word with the nurses to administer it slowly as I told her I felt it was forced through quicker last time.. so fingers crossed all will be well 🤞🏽😫
Nice to catch up with everyone’s progress. Hope everyone’s feeling ok 😘
So great to hear how we are all getting on - you are all such inspirational people.
Spottycotty - can empathise completely re the sore veins and so sorry you had a bad experience with one person. Sadly it happens. My main discomfort started last week in the vein that I had the original boluses through - its not at the site as such but up to my elbow and its weird it started so long after the actual cannulation. I can only put it down to the dose of epirubicin which has now been reduced following my initial reaction. The second site is a bit sore and the vein is getting harder. Slightly worried I am going to run out of them if I continue! Don't want a PICC though. Loving the description "chemo coma" - perfect!
Lisa - wish I worked at your spa - what a great boss. I really miss the gym too and I think that is what has caused my problems in that I am getting a bit depressed not feeling well enough to go out and about for a week. Crazy really, its just a week but it seems an immense problem at the time. Now I feel relatively OK its hard to remember how despondent I felt last week. I just don't think I have the energy to do a zumba class or even some time in the gym itself especially as my insides are still all over the place (sorry, too much info).
Blackcat - well done on getting through the marathon last week relatively unscathed. I am pleased the nausea is not as bad - that is a really unpleasant feeling isn't it? Re the bone pain. I have had the GCSF injections since cycle one and in my experience the side effects kick in around days 6/7 which the CNS tells me is about right. The pain that you describe as needles is very accurate but I felt it mainly in my sternum and my lower back - not constant but sharp and unpleasant. Easily controlled with paracetamol though. So it could be the injections or the Dox I guess. I did not feel it in my thighs or hips but they are long bones and so could be affected by the GCSF doing its job. The pain went within 24 hours of stopping the injections both times.
Julie - so sorry you had to endure a blood transfusion as well as everything else. This does take its toll doesn't it but as you say we are all getting through it - there is a big part of me that wants to carry on and not stop after the FEC so we shall see how I feel about it in a couple of weeks but I know that either way we are all well on the way to finishing!
Love to all xx