@dianne3 shaving my head was definitely a relief for me, it took away the stress of losing it. I think I’ll potentially still lose more, but to still have some (albeit patchy) hair after 4 ECs I think is good. I’ll just see what the Docetaxel does, but I’m hoping the fact I’ve kept some till now bodes well for regrowth. As for yourself, go with whatever feels doable for you over the next part of your treatment. If the cold capping doesn’t feel doable for 9 more sessions, don’t put that extra pressure on yourself.
I have tinnitus and I feel that has worsened during chemo, but no real issues with hearing. I spoke to my nurses and then my GP, getting it checked but they’re not concerned about it.
Are the bruises around the injection site for the accofil? I’ve not had any bruising but definitely have felt some wee pains - even drew blood one time which the nurse said was fine - just maybe nicked a wee capillary.
I would say anything at all maybe just chat with your team x
@woodstock77 my understanding is that the accumulation of the drugs can make the last few cycles harder so that may be what you’re experiencing. So far I’ve been ok, finished EC a couple of weeks back and just started Docetaxel so just waiting to see how that impacts me - so far I’ve felt a little more tired than I normally do at this point.
Sorry you’re experiencing that. The pins and needles and aching is something I was told to expect on the taxol drugs, have you spoken to your team? My nurses told me if I find the aching too much I was just to call them & they’d be able to prescribe pain meds, so maybe something to consider?
I thought I had a cold. And wasn’t surprised that it hit me like a ton of bricks. My temperature was ok, so I wasn’t too worried.
My temperature went up today so I rang the unit for advice and she asked if I could do a COVID test.
Couldn’t believe my eyes when it was positive!
I’ve spent the evening in A&E but thankfully theres no infection hiding somewhere, so they sent me home and will be giving me a prescription for anti virals.
EC3 won’t be happening on Friday now.
If you need me, I’ll be spending the next 6 months indoors
So sorry to read this @preferablywithfood. Seems a lot of covid around again and you must be disappointed to have your EC postponed too. Hope you feel better soon
While I’m on….has anyone had either flu or covid jabs while on chemo? I’m told it’s advised we have the jabs given the immunocompromised stuff but I’d still be interested to know if anyone experienced side effects from either. I’m booked in for end of month for flu as want to see how my first couple of Paclitaxels pan out first (all being well start weeklies on Tuesday), but I might end up regretting that if catch a lurgy first!
@preferablywithfood oh no! I hope you feel better soon sorry that the third EC won’t go ahead this week too, I know how disappointing it is when a chemo gets delayed.
Hi @pollypox, I fall into the over 65 category for flu jab so had already been called to get it. I discussed with my chemo team and was advised to get it before next EC cycle on 20th October. So i will be getting it done next Monday 13th, and so will my husband who has not bothered to get one before. Still not too sure about Covid jab as I reacted really badly to all those injections when we all had them. I think if you have flu/covid jabs its worth asking about getting them for partners as well. Xx
I had a Covid & pneumococcal jag just before chemo, I’ve been invited back for flu and Covid booster. My nurse team told me to book it a couple of days before my next chemo (I’m now on Docetaxel so I’m 3 weeks apart) as that will be the week after my immune system is at its lowest so I’m not getting it done till 22nd so can’t really comment on how it is but I was fine after the jags pre chemo so I’m hoping it’ll be the same this time!
Hi all
My 4th and final EC was on Tuesday I’m doing ok so far and hope that’s a good sign as if I’m in for a rough ride I usually feel pretty crap by now!
I have the usual 2 weeks between treatments before I start my weekly Paclitaxel, but my lovely oncologist has agreed to give me an extra week of recovery So, I’ve booked a long weekend away with the family at the end of that extra week. We’re going to a holiday village in The New Forest where we can just chill and my beloved pug gets to come too.
I’m soooooooo looking forward to it
Had my first paclitaxel yesterday. So far ok. No flu or covid vaccines have been mentioned by my tream.
On the plus read a lovely article on bbc this am about time in nature boosting natural killer cells ( which fight viruses).
Thought I’d touch base as I’ve been quiet this week. Thought I was doing ok all things considered but had a cough develop on Wednesday which I thought was maybe just a tickle and I needed to up the mouthwash use, but it’s dropped a bit to neck level and sounds phlegmy (sorry if TMI) but I feel fine otherwise. Anyway I rang cancer helpline today and have had lots of calls to/from them, the hospital and the GP surgery. Nobody seems overly worried, I had to go to GP who checked temp, looked at throat, listened to chest, checked for swellings who knows where and then took bloods. Hospital (macmillan suite) said just keep an eye on it over weekend and if anything gets worse phone helpline, but as nothing is obvious and I feel generally well just keep drinking fluids and don’t worry too much, so I guess I’ve done what I can. It’s the sort of thing I wouldn’t normally worry about but this chemo business gets you freaking out about every sniffle - GP actually told me to try and stay calm as BP was up, but what do they expect . Especially when before this year I never darkened their door .
I also had fun on Wednesday with an evil District Nurse (all the others are lovely) who just ripped off the PICC dressing at high speed and broke some skin at the same time . Not at the PICC site, but on the edge of the dressing where it’s a bit sensitive. Normally they’re super careful and try to move it around a bit to let the skin recover, but she just ripped it off and then my arm started bleeding so now I’m trying to let that dry out but it keeps sticking to the blue line/PICC sleeves which isn’t much fun. Hopefully that one won’t be back any time soon.
Oh and I had a letter calling me for my routine breast screening . So I cancelled that sharpish .
I’m looking forward to a quiet weekend sleeping, drinking lots of squash and water and hopefully shifting the cough after all the drama of the last few days.
@preferablywithfood I hope you’re starting to feel better now, covid isn’t fun at the best of times and the delay in chemo must be frustrating too
I think I have to wait for a letter about covid and flu jabs, but if I’ve not had one by the beginning of November I can then chase them up. I’m not sure what I’ll do, I’ll have had most of my chemo by then anyway but I guess it might be worth doing once chemo is over even if I don’t do it before. If I can face more needles at that point
@outdoorsy glad to hear first paclitaxel went ok (so far) - I’m a bit apprehensive about starting mine next week, it’s back to the unknown with regards to side effects isn’t it.
Hey @pollypox. I was an Aug chemo starter, posted a couple of times early on in this thread, I’m more a lurker .
I’ve had three rounds of EC so far (latest three days ago). I had both my COVID and flu jabs on 7 Oct, the day before this latest chemo as that’s when your immunity level is highest again and is what my chemo team recommended timing wise.
and booked it, along with the flu jab at the same time, at another nearby surgery/pharmacy as my own GP only does the flu, not the COVID jab.
They do check if you’re eligible but it’ll be all in your medical records that you’re
immunocompromised so completely entitled to the jabs. I’m 48.
As a side note, if you have a partner living with you, they are not automatically entitled to get the free COVID jab unless they are over 75 or are immunocompromised themselves - the criteria has been really tightened up this year (no doubt due to cost).
However, one way to try to get the COVID for free is for them to register as an unpaid carer with their GP surgery - we’ve done that and are going to try to book it now.
But they absolutely are entitled to a free flu jab - doesn’t matter their status or age, if they’re living with someone who has a weakened immune system: Flu vaccine - NHS Flu vaccine - NHS
Hi @dianne3 sorry missed this as been trying to just get through the week!
I definitely felt it was a relief to shave mine. It’s still been coming out but I barely notice it, whereas my curly hair before was just coming out in my hands. I’ve also had problems with my hearing - very sensitive to noise and everything sounds louder. I’ve had a type of tinnitus but can just hear my heartbeat - it’s driving me mad and I looked at the possible causes and raised it with the team, but they don’t seem too bothered. I hope it goes back to normal once this is done. And yes to the neck pain too - it usually starts two days after starting my jabs and gets worse the day after that - so I start on Thursday and on the Saturday afternoon/evening it starts in the back of my neck and across my shoulders and on the Sunday I can feel it a little further down my back and arms and then its usually gone by the Monday. Strange how some of us get some symptoms and others don’t - but yes you aren’t alone!
My EC3 has been rubbish, I’ve had a headache all week, no energy been feeling pretty pants. Had bloods today and was really hoping to get the call saying EC4 delayed, but alas despite feeling awful my bloods must have been okay, so final EC on Tuesday!! Hope I have at least one day of feeling normal before Tuesday comes xx
@sunshine-smile don’t worry about not replying straight away, I have days when I don’t look at the chat at all because I’m feeling so rubbish. It’s good to know that the side effects I am having are similar for others. I was so ill with my third EC just hoping the weekly Paclitaxel will be a bit kinder, will be having none of them and every third one will be with a Herceptin injections as well. Scary going into the unknown again as far as side effects go. Hope all goes well with your 4th EC on Tuesday, is this your last one?
Hi @nflk99 and thanks so much for the jabs intell - much appreciated. I managed to book a flu jab at my local pharmacy yesterday (my BCN also said get as close to end of cycle as poss) but they turned me away as ‘not authorised’ to jab anyone with reduced lymph nodes! As I’ve got none in left underarm and had two removed on right was sent home with flea in ear and told to rebook with GP!! I get it but have a sneaking suspicion they’ll send me away too cos don’t usually get their hands dirty with jabbing. Hopefully there’s a nice practice nurse who’ll sort me out
@pollypox Yikes! Sounds like that pharmacy was just covering themselves, although v annoying for you. Sounds like the practice nurse will be the best route for the flu jab at least, it’s so hit and miss, really depends where you live it seems and on their NHS trust/health policies etc.
Maybe try to get it done same time as COVID jab if they say no…
@nflk99@pollypox I find the different trusts/postcode lottery/hit and miss thing possibly the most frustrating thing about all this. In my mind it’s simple, we get diagnosed with BC, and are under the hospitals care whether it’s the breast centre or oncology (depending on where you are in your journey) so why can’t that department sort out fit notes/blood tests if you’re not feeling right (like me this week) and even the flu/covid jabs. I have nothing but good to say about everyone at my hospital, they have all been lovely and have helped when I’ve needed it. But every time I’m passed to the GP for fit notes or general checks the GP moans it’s not their job! I’ve had such battles, and we all have enough to be dealing with without fighting for things we shouldn’t have to fight for, or being sent off “with a flea in our ear”! I was told on Friday lunchtime by the GP that he had “other priorities on a Friday afternoon” (he did reluctantly see me at 2pm) whereas the hospital had said one way or another I would be sorted by 6.30pm. Unfortunately it wasn’t by them!
I don’t mean to moan, but I feel a bit moany and teary this weekend (I think we all have that right at some point, this is so tough and such a slog), like I say 95% of everyone I’ve been in touch with this year has been brilliant, but I don’t like being made to feel like I’m being a nuisance when I’m only doing what I’m told, and we shouldn’t have to feel like that. I do understand the NHS does a tough job in tough circumstances, and I’m sure there are budget battles behind the scenes that we have no idea about, but I feel like a couple of small tweaks would make our lives so much easier!
Hoping I wake up tomorrow with no cough (still feel line apart from that) and my positive head back on.
I totally agree with you @bramble1 but having worked in the nhs myself for a hundred years I expect the silos, differing cost codes and unjoineduptogetherness. You’re right though - it shouldn’t be like that - and yet it is .
Also you’re not moaning! We’re all doing the best we can and it’s bloody tough even when everything works…and I find it’s the little stuff that tips me over the edge too. I couldn’t find a hospital consulting room last week and when a lovely porter told me I was in the wrong wing I burst into tears (poor man), even tho it was literally 2 mins away.
I hope you feel better soon and your cough disappears even sooner xx
@dianne3 yes my last EC yesterday I’m so happy part one is done and dusted. I’ve felt quite nauseous and bloated since yesterday but just been for a walk and that has helped a bundle. Hair is thinning even more, but still holding in there. At least I felt more well on Sunday and Monday so wasn’t going in feeling too pants. On to fortnightly Paclitaxel for 4 rounds next!
Seeing oncologist next week and have a long list of questions but have also had my radiotherapy appointments through already. Initially I was due to start the day after my last chemo I phoned this morning and said no chance, that can’t be right. They thankfully agreed, but will be starting 3 weeks after my last session on 30th December and all the way through January. I was hoping for a month or so of chemo recovery time, but I guess it gets it out the way.
Hope everyone is doing okay and looking forward to seeing how everyone gets on with Paclitaxel xx
bloody Covid on top of chemo is the last thing you need. I hope you have a speedy recovery xxxx
I’m doing ok so far and hope that’s a good sign as if I’m in for a rough ride I usually feel pretty crap by now!
So, I’ve booked a long weekend away with the family at the end of that extra week. We’re going to a holiday village in The New Forest where we can just chill and my beloved pug gets to come too.
. Especially when before this year I never darkened their door 
. Not at the PICC site, but on the edge of the dressing where it’s a bit sensitive. Normally they’re super careful and try to move it around a bit to let the skin recover, but she just ripped it off and then my arm started bleeding so now I’m trying to let that dry out but it keeps sticking to the blue line/PICC sleeves which isn’t much fun. Hopefully that one won’t be back any time soon.
. I was an Aug chemo starter, posted a couple of times early on in this thread, I’m more a lurker 
.
.
I’m so happy part one is done and dusted. I’ve felt quite nauseous and bloated since yesterday but just been for a walk and that has helped a bundle. Hair is thinning even more, but still holding in there. At least I felt more well on Sunday and Monday so wasn’t going in feeling too pants. On to fortnightly Paclitaxel for 4 rounds next!