Wow - going to Wembley, thats fantastic. Well done you - I hope you have a wonderful time and that your dad enjoys his 70th. I have only been to Wembley to see Take That a few years ago with one of my stepdaughters which was fantastic. I am curious about the hotel - you said that they know you are on chemo and are sorting your food - could I ask what that entails? I don't think it would occur to me so I was wondering what I am missing!!
All good here - finish antibiotics today thank goodness and then hopefully cycle two on Thursday. Spent the morning picking up apples fallen from our one extremely prolific tree - none worth saving sadly but there are hundreds more to come down. Hope everyone is OK and enjoying the weekend. xxx
Lisaloo, wolvesgirls planned it with that 2nd wig hasn’t she if case 1st one blows away 😳a lady I met used wig tape/excuse the use of this word tit tape and stuck her wig onto her head. Spottycotty, something quite a few of us mixed up was something called thieves oil and had it on tissues while out so we could sniff that, just google recipes, don’t know if it worked but a lot of us had it. Also pack antibacterial gel in your bag and use all the time and again excuse the detail, hover above loo or put paper on the seat. And have an amazing weekend celebrating your dads 70th ❤️ Wolvesgirl big ❤️To you, keep getting the 2-3 litres flowing through your system daily ❤️💕💕✨✨Shi xx
lisaloo, you made me laugh saying you didn’t dare get out the car 🤣
I’ve still got my (thinning) hair at the minute but decided I’d wear my wig the other day, I was meeting a friend for breakfast so thought I’d just turn up and see what she’d say.. anyway..I felt like I was on an undercover mission in disguise !!!! Honest, I was so scared, anyway, she thought I’d been and had a blow dry 🙄😆 so felt better after the first outing.
Wolvesgirl, so glad you’ve got a plan in place now and you’re feeling more positive about things.
my veins are still sore, I’ve rang the hospital and they keep telling me I’m ok!! I’ve bought a heat pad for it so hoping that helps.
Sooo, you’re all going to think I’m mad but..,my dads 70 tomorrow and we are off to Wembley to see England play 😬
setting off in the morning and coming home Sunday so it should be ok, told me not to mix with crowds but Wembley stadium isn’t that crowded is it??? Seriously though, hotel is right next to the stadium, hotel are aware of chemo and are sorting my food etc so I thought I’d be so gutted if the family are there and not me.
ill let you know if I survive 😷
Anyway, I Hope everyone manages to enjoy their weekend as much as we can do xxxx
Hi Wolves girl.
Glad your feeling better and a bit more positive about your treatment 👍🏼 Also great you have a wig at the ready just in case!
Im back home now after my 2nd EC. Had a stronger anti sickness before the chemo this time as I was sick on the evening after the first lot. Iv also got my anti sickness bands on that others have recommended so fingers crossed they do the trick.
Iv also got some stuff for constipation to take 👍🏼😃 that’ll keep things moving a bit better hopefully.
My wig has thankfully remained on my head! 😂 it’s windy again today! and I walked to the hospital as it’s not far from my home..the fear was there it might blow away 🙈 Think I’m getting a bit more confident it won’t and a couple of the ladies on the ward today didn’t even realise I had a wig on!!!
hope everyone is ok and have a good a weekend as possible xxx
Hope everyone is OK - Lisalou - I hope your wig didn't blow away! I went and got mine this week in case my hair gives up the ghost - I am really pleased with it (actually got two whilst I was there so bought one of them) but I am not using it at the mo as I don't want to do anything to jeopardise my own hair which so far is hanging on in there. It doesn't look great but its mine! I am washing it twice a week in lukewarm water and a natural shampoo, drying with the hairdryer on cool and held far away from it and putting a leave on conditioner through. I also bought a silk pillowcase which is lovely and cool. I feel a bit happier now I have the wig in reserve just in case.
Spottycotty - my vein was (and to an extent still is) sore - I forgot to mention in yesterday in clinic so it can't be that bad but I will be unwilling to let them use that vein next time. They managed to avoid it when I was in hospital as I had to have several cannulas.
So, update re me. Went to clinic yesterday - didn't see the consultant but had a long chat with the CNS. The consultant has reduced the dose of epirubicin for next time which at the moment is still planned for next Thursday, bloods being well on Weds. Apparently my gamma GT shot up whilst I was in - the effect of the chemo on my liver so they need to check that. Normally I would expect that in a drinker - and I have been alcohol free for a month!! So I will give it another shot, she reckons it wont happen again but can't say that definitely, but hopefully with the lower dose it should be fine. So I am feeling a bit happier about it - now I feel back to normal I am planning things in principle for week three of the next cycle so at least every three weeks (and maybe more if I feel like it) I can do nice things with friends.
Think thats all my news - hope you all have a good weekend and can do whatever you want to depending on how you feel. xxxxxxxx
Sorry to hear that some of you are struggling but we’re all here for each other so don’t feel bad about coming on to vent your frustrations.. although family and friends are there for us we there not going through what we are so don’t really understand how we’re feeling.
I had my bloody done yesterday ready for my next EC tomorrow, can’t believe it’s come round so quickly! I’m every 3 weeks Becky so I suppose my body’s got longer than yours to recover before my next one. My hair started coming out by the handfuls 2 days ago and felt like straw 😫 so Iv just been for the shave this morning and am now wearing my wig. Just sat in the car wondering if I dare get out as it’s a bit blustery here today! I’m a bit concerned it’ll blow off!! 😳😂
take care ladies and I hope those that are struggling feel better soon.
Apologies, a bit of a whingey post today but just wanted to vent off with a a big BLARGH to someone other than my long suffering husband! I'm on day 7 post EC 3 and I'm just not getting the lift in SEs this time, when on the last few cycles I was on the up by this day, but I just can't shift things. My temps are fine, and my bloods were a-okay on the last two, but, boy, this is undoubtedly the most ill and useless I've felt, and it's been a bit heartbreaking not to be able to do the start of term school runs this week. I wonder if it's the dose-dense routine (anyone else on the fortnightly EC?) meaning the SEs are just getting cumulative and my body's not recovering, but I'm SO tired, my stomach is killing me (I'm a long term IBS sufferer and the chemo meds are messing with me badly - could hardly eat yesterday which is weird after being constantly hungry on the last cycles) and my chest and bones are aching. Sorry to be downbeat, I'm normally a VERY positive gal and trying to find my mojo back, but I think feeling a bit dwarfed by the thought of another blast of this next Friday, and I really wanted to get back to work next week! I'm wondering about asking for a dose reduction or even a delay of a week (although that would tip me away from the Christmas finish) for my last EC, although not sure they'll do this if my bloods are holding up...
Sorry, not huge point to this post just needed a rant - I know you're all going through the same ! I might try to cheer myself up with more wig shopping! I found an old dramatic blue mermaid wig in my fancy dress box that I used to wear when running 'under the sea' disco parties for kids (Actually, however bad I feel today, knowing at least I don't have to organise 30 sugar hyped up 7 year olds into a game of 'under sea disco limbo' whilst trying to retrain my dignity in a flimsy mermaid costume *not entirely suitable for wearing in front of the dads* make today feel a lot better...!). I've found with the wig teemed up with a beanie and a lot of black eyeliner I'm channelling a bit of Avril Lavigne teenage rebellion today (well, if you ignore my baggy eyes that look at least 70 years old!) so I might see if I can dig out my DMs and at least manage a surly stomp round the block and surprise my neighbours! But the wig has seen better days and is losing a lot of hair, so I'm wondering about upgrading a little! Mind you, I'm now at 4 proper wigs (not including the balding mermaid one) so I fear this could be getting a bit of an obsession and not the most sensible use of finances (particularly as the wigs are collecting in company with my growing scarf and turban collection!).
BTW Spottycotty, my Picc line remains a breeze - it is a bit weird knowing it's in there, but it's not caused any hassle at all (including on my good days being able to play the cello around it and manhandle the kids without it getting knocked or pulled)
Big love! Hope you're all handling things more graciously and less grumpily than me 🙂
Do you know though, the PICC line is the thing I have not wanted from day one!!
im terrified I will pull it or something!! 😩
Also, they don’t really have trouble putting the cannula in, it’s my veins that are bruised from the chemo that’s causing the trouble.
I rang today and they said it will get better, it’s been a week so hopefully it will improve before the 17th sept which is my next one...
i don’t want any delays but I wouldn’t be able to let them go near it at the minute.
Thanks for your advice, I’m going to get heat pads tomorrow ...
Hi Spottycotty ,
i also had problems with the nurses putting my cannula in.
it got so bad and i got sooo stressed that it was suggested i have a PICC line put in.
which i did have done.... no more painful cannula's , i was having my treatment every week and everything was done. Chemo , bloods n pre meds through my picc line 👍👍
if you decide to have this done n you want to know anything about it just ask..
mini mad xx 💖💖
I got my microwaveable heat pad from Sainsbury’s, it was one of those ones that you can use for neck, it stretched out lovely along my arm over the veins 👍if you are switching to t is softer on veins it was the fec that made mine look like a shark had chomped me 😳💕💕✨✨Shi xx
Sorry to hear that you are having trouble with your arm and veins after the treatment, and I hope that this clears up soon. It seems to depend so much on individual nurses and how they do the infusion - the nurse for my second EC put my hand in a really hot basin of water for about 10 minutes and then got the cannula in straightaway with no problems, while for the first EC I was given a lukewarm basin for about 30 minutes, then a lukewarm hand “warmer” which didn’t seem to do much at all, as she still still had trouble getting the cannula in.
I hope that your helpline can give you some advice, or perhaps offer your the option to have a PICC line or similar if that would be appropriate. Hopefully it will not affect your next treatment at all.
Take care, and I hope that you (and everyone on the thread) have a good day.
I did actually dip my arm in hot water and they used a heat pad as chemo was done.. the first time... the 2nd one she didn’t and she gave me really cold chemo too, I felt the shringe as she did it...so painful.
Anyway, it’s a week on and veins feel very bruised, I can’t wear my watch still, I will ring today to see what I can do as I’m worried it will affect my next round.
Microwavable pads sound lovely though, I swear my veins feel cold still sometimes.
For sore arms after chemo one of those microwave heat pads 👍really helped and also rubbed ibruprofen cream on too, but check with units this is ok so nothing interacts with chemo or meds. Your unit might make you dip your arm in warm water bucket before canulating you and also they can provide hot pack for your arm while chemo is being done 👍hope this helps 💕💕✨✨Shi xx
Great news to hear that you are back home, and that you are on the mend. Take it easy and give yourself time to recover. I hope that the discussions with your oncology team on Thursday go well - I’m sure that they will be able to find a suitable way forward for you, as they must have to deal with treatment setbacks and delays all the time. We are all on a long and sometimes uncertain treatment road, so we will be jogging along here with you for some time to come. However long it takes doesn’t matter - we will get there in the end.
I hope that your hair holds on! Mine is just a memory these days, but I am getting better at wearing my wig with confidence outside and not worrying so much that it is going to fly away.
Now had a chance to read through what has been happening to everyone over the last few days - generally it seems that everyone is doing well which I am so pleased about. Varying positions re hair - will let you know how mine goes as I about to enter the danger period in terms of hair loss!! I am now home and I am sure will continue to improve - the hospital was fantastic but they can't do anything about pump and monitor alarms going off all night which became a little wearing (and I can sleep on a clothesline)! I am still a bit chesty but apyrexial and on oral antibiotics so on the right track.
I will let you know the outcome of my discussion with the oncology team on Thursday - if I continue with chemo it will probably be delayed and as I am way behind most of you anyway I will be even further! By the time I finish you will all be well on the post chemo road!
Thanks again for all your support and hope you all continue to do well. xxxxxx
Happy belated birthday Lisalou - glad you had a good celebration and that your hair was still around! Here's hoping your next cycle goes well. Thanks for the good wishes during my little diversion into hospital this week! xxx
Sorry to hear that you have a sore arm - my vein was, and still is, sore from my first cycle - I am assuming it will improve over time, there is nothing to see in terms of inflammation but its very much there.
Re your hair - I smiled when you said crap hair is better than none - I would agree with that! I am not at first shedding point yet (day 13) but am being vigilant. It is not at its best to be sure but I am prepared to keep going with it. I didnt mind the cold cap first time, will be interested if its painful second time if I continue. I am going to try on the wigs I ordered tomorrow so I will feel a bit safer when I know I have a fall back position if it does all fall out. xxxx
Thank you so much for your honest and very helpful message. I agree with everything you say except I am sad that you feel angry and disappointed - I think to take the decision to stop is a very brave one and I commend you for being decisive and doing so.
Sadly, I don't have the option of Letrozole so I have to consider my options slightly differently. I won't make a snap decision - certainly when feeling so ill it seemed very clear to me that chemo was not the right thing but now I am feeling better that is not the case. Having said that I still might decide to stop but I will have a good chat to my oncologist on Thursday and will be advised by him.
I am sure that my next cycle will be delayed in order to make sure I am completely well before carrying on if I do which I am really upset about as it will mean that I won't finish before Christmas which was a bit of a goal. Still I know its a safety thing and will do as advised. The lack of control through all this is a real problem for me!
Thanks again for taking the time to be so supportive and to share your valuable experience. All the best to you xxxxx
Hi Wolvesgirl, I’m so sorry you had such a terrible time first round, sounds Like hell, it’s bad enough as it is! Sending my love and hope the docs can come up with a plan for you, so you at least feel like you have an option to continue or not.
Spottycotty, I’m the same with cold cap, it was harder this time and my headaches afterwards were so intense and lasted days. I had my 2nd round of FEC80 on Thursday (day 25). No Hospital this time, I spoke to docs and they gave me Emend and patch prior to chemo so I had plenty anti sickness in my system. I was still sick and nauseous but nowhere near as bad. I am much more tired this time, does anyone know if it gets progressively harder to bounce back from after each treatment?
My hair was thin to begin with and much thinner now...bloody horrendous, my heart just goes out to everyone losing their hair....I just feel mine will be out any day now and it’s so hard to face. It’s like the last part of a healthy normal you being taken. But suppose it Shows the treatment is doing what it should. My friend suggested shaving it but can’t do that yet! Think I’ll hang onto my last weak strand!
sending love to everyone, another day down is another day closer to finishing this! Thanks so much too to lovely ladies adding from other monthly threads, your experience and advice is invaluable xxx
I am mbj from February 19 thread. I too had neutropenic sepsis on my first round of FEC. Believe me I know how ill you have been feeling and how weak it leaves you. I was in hospital for five days. I had IV antibiotics and oral ones for two weeks after I came home.
From reading your post I saw that you are unsure of whether to carry on with your chemo or not. I made the decision to stop chemo after my first round. I was not very fortunate in my oncologist as he was not particularly helpful. My BC is ER+ so I have been able to start taking the hormone medication Letrozole. I understand you are triple negative so don't have that option.
Looking back now to February my advice to you would be to take your time in making a decision and ask lots of questions about the benefits of the chemo to you and what do they plan to do to keep you safe next time.
I am really not sure if I made the right decision, of course now six months later it is harder for me to remember how sick I was. I was and still am angry and disappointed in my body and my bravery that I could not face another round of chemo.
Although we all have BC we are all unique and each one of us is making life changing decisions every day at a time when we are most vulnerable. I hope you have someone who will go to your oncologist with you, so that you can both ask questions and only then can you decide what will be the best way forward for you.
I hope you are feeling better and will be going home soon.
Wolvesgirl, so sorry to hear of your rough time, I can totally relate to your feelings of not really wanting to carry on as that is how I felt on round one when I had to go in with nausea, nowhere near as bad as you!! I can remember thinking that there was no way I could manage another 5..,
Really hope you get a plan sorted with your Onc.
Im now on day 4 of 2nd AC. Had a rough night again the first night, wretching every hour throughout the night but felt bit better by the morning, I’ve had fatigue earlier this time but I’d rather have that then feel sick all the time!
I’ve got a really painful hand and arm from where the chemo went in though, it was so painful at the time, the nurse was pushing it through so fast and it was freezing.. anyway, went in Friday and the dr had a look and said it was fine and to keep an eye on it, still painful today so if it hasn’t improved tomorrow I think I’ll ring again. Anyone else had this??
My hair is still here (for the time being!!) I’ve cold capped both times, I’m day 26 from first treatment) it’s sheds so much st the slightest touch, I have no bald patches as yet but it’s very thin and lank, I can see me getting fed up of it if it doesn’t go by itself, but then I think crap hair is better than no hair??? Saying that, the cold cap was so painful the 2nd time round, I’m unsure at the minute if I can face it again!!!
Keep well everyone, chin up Wolvesgirl, you’re hopefully coming out the other side now 🤞🤞
thank you for the birthday wishes 😊 it really has flown over and I certainly intend to make the most of this week until Friday. It’ll be another one ticked off and I suppose I can look at it as half way through the EC as I’m having that for 4 cycles. Then onto the
Belated happy 40th for yesterday lisaloo 😘😘glad you managed meal and your hair celebrated with you too 👍your 2nd one has Coe round quick now, enjoy this 3rd week, we always got excited getting to week 3 if that’s not too nuts but we were focused on ticking them off, I had postit note up in the kitchen ticking them off and every time I passed the bell in the unit, I’d sat to it, i’ll Be ringing you soon 💪💪💪big ❤️❤️To everyone 💕💕✨✨Shi xx
wolves girl.. sorry to hear your still in hospital like the other ladies have said it’s not an uncommon thing and hopefully they can get your chemo tweaked for you. I’m keeping my fingers crossed for you that you can get back home ASAP.
Glad everyone seems to be doing relatively ok, everyone’s side effects are so different and all of us don’t know what the next day is going to bring, it really is a case of taking each day as it comes. My next EC is on Friday...it seems to have come around so quickly! It was my birthday yesterday (40 th 😫) and Iv enjoyed a weekend of eating seen as though I can’t drink! Meal out last night with the girls and Sunday dinner out today with my family.. my hair has stuck around for the occasion too although I’m expecting it to start shedding anytime now.. I’m on day 16 post EC and going off what you ladies have said it could start happening over the next few days.
Big hugs to all.
It’s great to hear your update, and that you have been able to get out for a couple of hours today. It sounds like you are making good progress, and hopefully your temperature will stay down and you will be able to get home tomorrow. I will keep my fingers and everything else crossed that they let you escape very soon.
As far as the second EC cycle goes, I am now on Day 5 and feeling more or less OK (have just cleaned the whole house, done a load of laundry and also some gardening this afternoon). I felt a bit more nauseous than in Cycle 1 on Days 2 and 3, but this has subsided and I am now back to eating normally. I don’t have any tastebud changes this time round (so far), which is good. I also don’t feel as tired this time as in Cycle 1, and in fact seemed to have quite a lot more energy today than I was expecting. I don’t have any mouth, skin or nail symptoms either, so at the moment I can’t complain. Who knows what tomorrow will bring, as I know that more side effects may kick in soon, but for the moment I am just taking things as they come.
I’m sure that your medical team will be working out a solution for you - they must be used to people getting infections, and having to adjust the treatment if necessary. During my one night in hospital, I met several people who like you were on IV antibiotics for a few days. One of them was discharged at the same time as me, and as we left the ward he said that he was going to resume his treatment as planned, having had a review with his oncologist about some adjustments to his regime. So hopefully this will be possible for you too.
Take care, and let us know how it goes.
Dear August starters,
Sorry I've not checked in for a while, and Wolvesgirl, really glad you're feeling better and hope you get home soon, and can have some good conversations with your oncologist on Thursday. I know what you mean about how feeling better makes you realise how bad you've been! I've not had any need for hospital so far and have been lucky with my bloods, but on EC seem to get a really blinking rough week (nausea - I'm taking EVERYTHING meds wise - diarrhoea, cramps big time fatigue, aching bones) followed by a week of feeling pretty normal (last week I managed to get back to work on day 11, and managed to lead 2 toddler storytelling classes which was really good for my mojo). I find on the good days I want to do everything possible before going in for the next dose which is probably not wise in terms of managing my energy (I'm on fortnightly EC so not getting much recovery time). I'm on day 3 post EC 3 today and not feeling too great - just managed a very slow stumble round the park after a hefty afternoon nap, and I think that's me all done for today. Just one more of these devils to go, then I'm switching to 12 lots of weekly pax which I'm hoping hoping will be gentler...
Saw some comments on wigs - I've had some success with fun cheaper wigs from annabelle's wigs and lush wigs - they're not as good quality as the NHS wig I was given, but not too pricey, but actually I've found myself wearing them more as somehow the pink/blue ones, being 'out there' fake look, strangely less 'wiggy' than my 'trying to be natural' brown NHS one (plus I guess this is the one chance to outlandishly wear the hair styles I've always secretly wanted!). Also getting skilled up with tying my own turbans and headscarves - if you're looking for turban tutorials and are on instagram the 'bravery co' do good quick videos on how to tie.
I think it's 3 or 4 days on the sofa and watching Friends on netflix ahead for me now! Thankfully school and childminder routine starts this week (my little ones are 3 and 6) so I'm really looking forward to getting into some sort of a routine - chemo and kids on school holidays has NOT been the ideal mixture this month... Although not sure if I'm going to have any luck with actually being awake in time for the school run this week so going to need a bit more juggling to make this work somehow...
Thank you for taking the time to send such positive thoughts to me over the last couple of days - I really do appreciate it. I am still in hospital as although my bloods have improved I am still spiking temps at night which is annoying so still need IV antibiotics. However so far today all good so fingers crossed it stays down and I can go home tomorrow. I did have a couple of hours out today which was great and I am certainly much better than I was when I would not have made it to the end of the ward!
I will check in as suggested with the June and Feb groups before I see the onco as planned on Thursday so again, many thanks. Perhaps changing the dose is an option - feeling better today has made me realise how awful I have been feeling.
Many thanks again and my my best wishes to you all - looking forward to hearing how the second cycle folks have been getting on! xxxxx
im from the June chemo thread and just wanted to say that i am also Triple Negative...
we are limited with regards to our treatment and chemo seems to be our only option...
sorry you ended up in hospital, at least i didnt have any infections or extra visits to a & e.
i did have acute reaction to Paclitaxel though after about 5 minutes.... horrendous lower back pain spasms but nurses n dr where incredible in getting it under control.
i finished my 12 Paclitaxel on friday the 23rd.... didnt think i was gonna make it to the end...had serious " wobble " around session 7 but i did... and so can you my lovely 💖
if you needany questions answered and i can help just ask..
i had 12 paclitaxel over 12 weeks and carboplatin every 3 weeks for 12 weeks.
tc. Mini mad xx 💖💖
Hi Wolvesgirl xx hope you’re starting to feel better 💕 I wrote you some words of advice on the February forum so pop over and say hi when you can xx
Hi Julie ME
Susie from Feb 19 group again. I'm not stalking, honest😆😆😆. Regarding wigs I bought one on-line from Wigs4you. They have a brilliant choice of reasonably priced wigs and as you need one for medical reasons i.e chemo you can purchase one free of vat. There is a form to print off which you send to the company based in Ely, Norfolk, together with your order. When they have cleared the paperwork they will phone you for card payment details and post the order to you. They also do a fringe that you can attach to bandanas, hats, etc so if like me your fringe, if you have one, does disappear, your sorted. They also sell a starter pack of wig shampoo, styling spray, conditioner, brush, stand for storing/drying wigs. I also bought a wig through my hospital using a voucher. I cold capped and lost up to 60% of my hair but decided to wear a wig until I can dye my hair again as I have no desire to rock the grey look🦍🦍🦍🐱.
I’m sorry to hear that your hair is shedding, despite the cold capping. I didn’t bother with the cold cap as I was told that my first two sessions (EC) would be very harsh on my hair, and that even with a cold cap, I only probably had about a 30% chance of keeping about 30% of my hair! I did keep just about all of my hair until Day 18 after the first EC, and then it started coming out in handfuls. I still do have a light wispy covering and am not totally bald all over, surprisingly enough, but certainly do need to wear a wig or a hat.
I went to the wig fitter recommended by the hospital, and for whom they gave me a voucher. I did this before my first chemo treatment because I didn’t know how quickly I would lose the hair. I was able to try several wigs, was given lots of good advice, and took away my preferred wig on the same day. Once I had got used to the first wig (which was slightly shorter than my own hair), I decided I also wanted to get a longer wig to wear as a change. This time I looked online because I felt I had enough information to make my own choice, and found an excellent range of wigs on the site “Simply Wigs”. I asked them a question via email about cutting the fringe, and they responded immediately and were very helpful. The also have videos with people wearing the wigs, and 360 degree images so you can see exactly how the wig looks when it comes out of the box. I ordered a wig from them, plus some wig care products, and received it in a couple of days. I am very pleased with it, and would highly recommend their service - although of course other companies are available and other people will no doubt have other suggestions.
Best of luck with whatever you decide to do!
Hi Wolvesgirl. Very sorry to hear of your setback - as someone with more experience than me posted, that's all it is and I feel sure your consultant and doctors will be able to adjust your chemo to suit you better. Hopefully your body is now fighting back and you'll be back home very soon.
I had my second cycle on Thursday (T-CHP) which included Zoledronic Acid for the first time. I'm sure it was that which caused me to feel like I had flu yesterday... could hardly get out of bed all day, but managed to be up and around in the evening and I'm feeling better today. Waiting for all the other side-effects to kick in now, if last time is anything to go by - so I'm planning to take it as easy as possible for the next 6 days or so. It does feel like an uphill battle, but we all know we have to go through the 'pain' to get the gain in the end. I have cold-capped both times so far - although not all of my hair has come out (yet) I do get handfuls every time I touch it. Ah well, it was probably worth a try but I didn't buy a wig, although do have a few turbans for emergencies. Did any of you just buy wigs off the internet, or did you go to specialist chemo wig makers? My hospital gave me the card of someone they recommend, but it seems quite a faff if I want to get one quickly. Any thoughts / advice would be very helpful please.
Thanks all, and very best wishes Wolvesgirl.
Sorry to hear that you have been admitted to hospital. I've noticed a couple of people have replied to you already but if you want to hear how others have coped with being neutropenic or had viral infections then please pop into our Feb 19 group. As I've mentioned before we're a large chatty group and I'm sure the girls will be only too happy to relate their experiences. Being TN doesn't offer the best variety of options but does respond exceptionally well to chemo. As already mentioned a reduction of dosage may be all that is required and your onco will discuss this with you. Get well soon.
Susie B ❤❤❤
PS. I'm also TN along with another lady in our group.
So sorry to hear that you are in hospital - I had been wondering how you were doing. It is bad luck to have developed a viral infection, but you are in the right place and it sounds as if you are being well cared for in the oncology unit. I felt the same when I had my overnight stay in the oncology ward two weeks ago. I will keep my fingers crossed that your neutrophils get back up above 1 as soon as possible, and that your temperature stays down so that you will get home to the Shropshire hills very soon.
Hopefully your consultant will be able to guide you about what the best way forward is. I guess that any of us can develop a viral infection during chemo, and that it does not necessarily mean that your body cannot cope. I have met people in our chemo treatment room who have had a similar infection and hospital stay early in their treatment, but still were able to go on to have more sessions of chemo (some had an adjusted dose, or a tweak to their regime). I’m sure that your team will be able to offer you a solution, or different options, that will work for you.
Take care of yourself, and do let us know how you are doing when you are able. You could definitely have done without this bump in the road, but you will get through this very soon and you will be OK. We are all here cheering you on.
Wolvesgirl 👭👭😘😘sorry you’ve ended up in casa nhs on 1st lap 😘😘same happened to me. Firstly very well done you on keeping vigilant and getting yourself to hospital and kept safe 💪💪I was 😳same as you, but spoken to my onc and had a reduced dose for remainder of chemos. Remember your full whack is tailored just for you, so a reduced dose could be someone else’s full whack. A lady tipped me off about life Mel honey when I had my casa nhs stint and I don’t know if it was that or reduced dose or combination of both but did remaining 5 and no more casa nhs stays 💪 if you google Bristol stool chart cakes you’ll see all the cakes that people have made to resemble the Bristol stool chart 😂🤣😂🤣😂 I know it sounds bonkers but it gave me a 😁after being in casa nhs for a while 👭👭we are here ❤️❤️💕💕✨✨Shi xx
Dearest fellow August 2019ers
Sorry I have been a bit quiet this week - I will post more fully in due course but to cut a long story short I have been in hospital since Monday evening with a ?viral infection that combined with the chemo has taken me off my feet. I was a bit better today and my temp was settling so I nearly made it out of the door but now am neutropenic so couldn’t leave after all - IV antibiotics back up and have to have neutrophils over 1 plus no temp for 48 hours before I can escape. I know I am in the right place but I so wanted to get home today 😒😒😒
Positives - the helpline system worked very well, out lovely Trust which is much maligned were, and continue to be, magnificent, given ED was rammed and ambulances were queuing off site (which as an ex manager I noted)!! I only spent one night in an acute admissions area before getting a bed on oncology where I feel safe and cared for.
Negatives - I am becoming increasingly sure that chemo is not for me despite it being the only option as I am TN. Its a decision I need to discuss with my consultant of course but they can’t rule out this happening again! I think my body is telling me that it cannot deal with it despite how robust I think it is.
So pleased you have been celebrating birthdays (with or without hair) Lisalou and that second cycles are going well Blackcat. Keep posting as it’s good to hear from you all whilst I gaze longingly at the Shropshire Hills! Xxx
Hi Lisa (and everyone on the thread),
I hope that you had a great birthday, and it’s good to hear that you have kept your hair! Mine suddenly decided to depart last weekend (it came out in big handfuls just before I had planned to have a head shave), so I have now had to get used to my wig, plus a variety of hats. The first day I wore my wig outside it was 33 degrees, which was not the best day to road-test it as it kept slipping around with the heat!
My second EC on Wednesday went OK, and was really quick (the nurse pushed in the 5 syringes of the dreaded red E in about 15 minutes, and then the C and final flush only took about 30 minutes). I was sitting next to a lady having a 10-hour infusion for bowel cancer, so felt very lucky to be in and out so fast. I had a slight headache afterwards which lasted only an hour, and now the only side effect I have is a bit of a nauseous/churning feeling in the stomach which comes and goes. I forgot to put on my acupressure wrist bands overnight and woke up feeling quite queasy this morning, but as soon as I put them on the queasiness reduced. I don’t know how they work, but as long as they are helping, I am not going to question it. I am not taking any medication for the nausea other than the post-treatment steroids (although I have two boxes of different tablets which my unit has given me on standby), but am hoping to manage with the wrist bands plus some natural remedies (peppermint tea and eating dry oat biscuits with ginger pieces in them seem to work quite well for me).
I hope that everyone on the thread is having a good day. I gather that there has been a technical problem on the forum website since Wednesday (I emailed the admin team because I couldn’t log in), but that this has now been resolved, so hopefully more of our little gang can check in soon and we can catch up with how everyone is doing.
Thankyou for the birthday wishes.. still clinging onto my hair... for now! Hope your second EC treatment went ok and your not feeling to bad from it.
Hope everyone’s feeling ok.
Great to hear that you are feeling back to normal, and I hope that your hair will make it through to your birthday! I think that there is a good chance that it will - mine only really started shedding in a noticeable way on Day 18. It did, however, fall out quite quickly after that, and by today (Day 20) it is almost completely gone. I had been planning to have a head shave tomorrow at our Cancer Care Centre, but there is nothing left to shave off. I have been trying out my two wigs today, and in a way it is a relief not to have to worry about the hair falling out (I know the feeling about checking the pillow).
I hope that you are enjoying the sunshine, and that you will have a lovely birthday. I am off to the hospital for blood tests tomorrow morning before EC treatment 2 on Wednesday, so am just beginning the whole cycle again.
So sorry to hear that some side effects have kicked in after Day 3. I’m pretty sure that this is just a blip, as quite of few of us had a downturn after the steroids finished, and felt more nauseous/miserable/wiped out than in the first few days. My worst days were Days 5 and 6, but from Day 7 onwards things got better and I was able to eat properly again. I am not having the injections, so for me the only difference was the steroids ending (or maybe it’s just the way the drugs work - perhaps we just get a dip after a few days as our bodies absorb them). Don’t be disappointed - you are doing really well, particularly as we can’t control the way we react to these potent chemicals across the treatment process. You have got this, and hopefully you will feel much better soon as you move into the next few days of the treatment cycle.
Sorry to hear you haven’t felt very well Wolvesgirl. Hopefully it is just a blip and you’ll be feeling well again soon. Spottycotty sorry to hear the hair has now started to shed. I’m now 10 days post and I’m already checking my pillow as soon as I wake up I’m that paranoid about it. It’s one of those things that we know is going to happen but we just want to cling onto it for as long as possible. Plus it’s my birthday this weekend and I’d really still like to have my own hair for then! 😆 anyway... if not Iv a wig at the ready. Apart from worrying about the hair loss I feel pretty much back to myself 🤞🏽 Hope everyone’s having nice bank holiday Monday.
Wolvesgirl ❤️You have got this 💪💪it’s just settling into routine with it. Your team should tweak your antisickness meds till they hit right combination, I was akynzeo and metochlopromide and no problems. As for sleeping, don’t worry about that, you’ll be up all hours, peeing all hours because of fluids and then catching up on zzzz at all hours, it’s just about listening to your body and doing what it wants ❤️❤️ Time for a bit of eye of the tiger by survivor on chemo jukebox for you 💪💪💪 I know you can 🥊🥊🥊through 💪💪💪💕💕✨✨Shi xx
Wolvesgirl, it definitely is a blip, keep going, i was a lot better by day 6 and head cleared as soon as I’d stopped meds and injections.
I kept a diary of how I felt so i can focus on it next round, it’s awful not knowing if you’ll get yourself back but you will and you HAVE got this 💪
So glad to hear that you are all doing well despite the hair loss Spottycotty - maybe it was the rollercoaster! Sadly, I have taken a couple of backward steps - days 1-3 absolutely fine, the last two have felt really rotten - very sick, bit fuzzy and sleeping badly which has made it worse. I phoned the helpline this morning who advised restarting the Ondansetron which I was pleased with as the other antiemetic (Maxolon) has been useless. Am keeping going with the fluids and eating bits and bobs so hopefully this is a blip. I wondered if it was the injections but the helpline didnt sound that interested in them. Really disappointed - I thought I had got this!
Good luck to all who are about to start cycle two - that time seems to have gone quickly! xxx
Morning....spoke to soon, hair shedding 😆
and then, because I probably murdered a frog in another life and need to be punished, I started my period 👍🙄😆
Never mind, can’t tell just yet so I’m off to a bbq with my grilled salmon 😎
Hi Spottycotty (and everyone),
Good to hear that you enjoyed the rollercoasters without feeling sick, and also without any unexpected hair loss! I definitely couldn’t have risked going on a rollercoaster over the past few days, as my hair started coming out in handfuls on Friday and today (Day 19) has just about all dropped out. I was planning to have a headshave at our Cancer Care Centre on Tuesday, but there will be nothing left to shave by then! I tried out one of my two wigs today for the first time - not the best day to have to do this as it was so hot - and it was OK, so I will venture out of the house with it tomorrow and see how that goes. Other than the hair loss, I have had a good past few days and have been feeling completely normal.
My next EC chemo is on Wednesday too, so I am also counting down (I have to get bloods done at the hospital on Tuesday). After a week of feeling full of energy, I am not looking forward to being at the mercy of the side effects again, but on the other hand it will be good to get the second treatment completed.
All the very best for Wednesday, and good luck too to everyone else who is having a treatment in the next few days. I hope that everyone will also enjoy the Bank Holiday tomorrow!
Just checking in, hope everyone is enjoying the bank holiday weather 😎
Not much to say really, we went to a theme park Friday and I managed all the rollercoasters without feeling sick 😁 Also, I was slightly worried that my hair might just blow off but fortunately that didn’t happen 🤣
Im now 19 days past 1st chemo so I’ve been expecting the shedding to start from last week really. I have woken up in the night to check my pillow so it really is on my mind!!
Anyway, everyday is a bonus isn’t it!
hope everyone is ok, countdown for number 2 on Wednesday xxxx
Thanks very much BOD. It was great to hear from you, as it sounds as if we're having similar treatments. My drugs are Ontruzant, Herceptin and 2 types of Zoledronic acid. I'm seeing the chemo consultant on Wednesday and will ask if she could explain a little more - I'm down for 18 cycles in total, which seems an awful lot, but it's "only" 6 cycles of the chemo. I haven't had the Zoledronic acid yet as needed to get sign-off from a dentist before they start me on that. So I go back for the second chemo next Thursday, and assume will be given the Zoledronic acid then.
I'm also on steroids the day before, the day of, and the day after treatment. Then I get a couple of days off and back on steroids for 2 days. I agree, although my face swelled up on the steroids I did feel much better when taking them. Then I have to self-inject the drug to help white blood cells for 7 days - not nice, but has to be done!
I found Day 10 to be when I started to feel better as well - more energy, less nausea. And, as you say, diet seems to make a big difference (although I'm either constipated on running to the loo - no happy medium). It really makes you appreciate how your body copes normally doesn't it? The hospital are going to change one of my anti-nausea drugs for the next cycle, as I did feel very rough when I ran out of one of the two I was taking (so I think only one was working).
I'm pleased to hear you're half way through - I'm looking forward to getting there so that I can start to feel I'm on the downward path! I hope the rest of your treatment goes well and we can all leave this behind us before too long. With best wishes, Julie
😁wolves girl 👍keep fluids flowing keep taking temp, start watching out for oral thrush, burning pee even with no temp days 7-14 are you nadir days so even with no temp if anything doesn’t feel right phone your unit. Epsom salt baths everyone to deal with bone pain from jabs/t chemo 👍👍it really helps and was a tip passed onto us from May17 thread that looked after us oct17 thread 😘also is your skin drys out and no moisturiser can work get udderly smooth with extra urea from Amazon 👍👍it’s sublime and again another invaluable tip passed to us ❤️❤️💕💕✨✨Shi xx
So far so good - day 3 today so will be starting the dreaded injections so bit worried about the back pain that may occur. Still, has to be done. But generally pleasantly surprised that I feel like this - I know the first cycle is the easiest!
I have spent the morning picking plums off our small but prolific tree ready to make into plum gin - should be ready for Christmas! Now sitting in the shade loving this weather whilst listening to my husband mow the churchyard!
Hope you and everyone else are ok and enjoying the sun. Xxxx