Oh bless you! I am glad to hear that they have got to the bottom of the problem but so sorry that you have had to go through all of this. Sending you huge hugs and wishing you a full and speedy recovery from it all. Siân xxx
So.....I’ve had quite a week.
Last Monday after my third chemo cycle on the 25th March I had a really bad headache that no painkiller would touch and during Monday night had a massive night sweat (which was disgusting ) headache all day Tuesday then Wednesday early morning woke up feeling terrible with a raging temperature. Phoned my emergency chemo number and was told to go straight to A&E as it was only 6am.
Spent most of the day there and to my amazement was admitted!
I was so shocked but as the Doc said we need to observe you for 24-48 hrs and find out what’s causing this.
tbh I’d didn’t take them long to work out using numerous blood tests and a swab from the incision point where the portacath went in that this was the cause, no big surprise to me as I have saying this for the previous two weeks as it’s still swollen/hard and red and bruised on the surface.
They started me on two types of IV antibiotics and then after 3 nights on one ward was transferred to the specialist Macmillan cancer ward which was a lovely place, so clean & modern with my own en-suite room. I’ve been neutropenic 3 times and it was only yesterday I was told I’m healthy enough that they can remove the portacath today!!
I am just sooo relieved that it’s going to come out and just hope beyond hope that I don’t have the same traumatic experience as I had when it was installed.
I don’t care that I missed Easter but I do really care that I didn’t get to spend any time with my family and we have all missed each other so badly.
Keep fighting everyone!
I hope your vaccine goes well, Linda. I had my second one on Saturday and felt fine. I had a very slight temperature on the day but very low-grade (37.4 was the highest it went). Otherwise, I felt fine. I hope your third EC goes well. Xx
Lovely to meet you. I started chemo in Feb. I did three EC chemos and am now waiting for my surgery (meeting on Friday to tell me more). I will then have three more chemos with Herceptin and then 4-5 more Herceptin on their own after that. I think I should be finished by about end of October. It seems a long road ahead but I am trying to just take it week bu week and sometimes day by day. I have found great comfort in coming on here. As you say, it can be very lonely going through this and because of Covid there are not the normal chances to meet with others in person who are going through the same thing. I hope you feel that this is a place where you can share what you would like to. Siân xx
Hi @katiem I started my chemo 26th Feb too. So approaching my 3 rd EC ... should be Friday but I get my Covid vaccine on Thursday late afternoon and chemo 9am Friday so I will see how I feel after it and might need to postpone chemo if I have a temp or don’t feel great ... I hope your first chemo went ok for you.
As you say it can be a very lonely place and as orhers have said unfortunately it is not a club that any of us would have wished to join. However speaking for myself it has been great chatting to all the lovely ladies on this forum and getting feedback and support. We are all here for each other during the most difficult of times. Not only are we dealing with BC but are having to deal with it during a pandemic too.
Sending big hugs
I started my Chemo in Feb but have only just come across this forum! I’m looking forward to chatting to you! It can be a very lonely place can’t it?
I hope you are all feeling OK (or as well as you can be) and had a lovely, if cold, Easter weekend.
I had my pre-Pax check-up earlier. Dr listened about my steroid reaction and said they were not acceptable. #Result However, as Pax is new to me he will prescribe the full dose for my first session on Friday and then look to reduce depending on how I am with the chemo. He assured me it will be much less than for the EC and the amount I take at home will be too. Again no injections nor Priton (thank god) or other stuff to administer myself nor be given on the day other than the huge anti-nausea tablet 30-60 minutes before the chemo's administered.
He was lovely in that he said that I was doing very well and he was looking at my hair to work out if it was mine or a wig. Bless him - I saved his embarrassment and said it was a wig.
We did talk about a Picc - we'll see how my veins cope. And the good news is, I will have telephone check-ups each week rather than having to go hospital. I will have face to face appointments after the 3rd and 6th weekly cycles. It does mean my bloods will have to be done before each of the other cycles so some hanging around before sitting in the chair.
I am going to have my 2nd biphosphonate this cycle too. I did question it and he understood my reasoning but as I'd had no side effects, I'll have it.
There was a hell of a queue for bloods this afternoon - catching up on the Bank Holiday I hope. My pal said that it was madness today.
So Friday. I so hope I'm OK on Pax - dreading feeling pants until June. I won't - be positive!
Love and hugs.🤗
Totally get where you are coming from re “limbo”. I hope you hear about your op soon. It just adds to the anxiety level doesn’t it.
Re appetite I have been eating chocolate like it is going out of fashion! However like you my eating habits now seem to be different. Can’t take spicy foods due to indigestion so everything a bit plain at the moment. Also wondering if I should take my own lunch to the hospital on Thursday as after each treatment the thought of what I ate in the hospital makes me nauseous. However on the flipside it may put me off what I take with me ftom home too so will need to have a good think about it.
As you say hospital visits are reassuring as I get to speak to the nurses and get a bit of a boost from them re how I am doing. Think the oncologist also going to speak to me on Thursday so will ser how that goes.
Take care and hope everyone has a good day.
Hi again Kaz,
I totally know what you mean about the lack of structure. I am in limbo at the moment waiting for news about my operation and I’m finding that quite hard. On the plus side, my appetite has come back so I am enjoying being able to eat semi-normally, although I have to say I prefer completely different foods now to before I started chemo.
I found the hospital visits were good for being able to talk to people, whether it be nurses or other patients.
That is great that you are nearly halfway. It will be very good psychologically I am sure.
I you and whoever else reads this has a good day. Xx
Thanks for your reply. It’s reassuring to know it’s not just me feeling the cumulative effects and like you it seems to have taken me longer to recover each cycle. Am so used to doing things at 100 miles an hour pre BC it’s hard not being able to. Housework is about the only thing I can do as I am not currently working but the routine gets quite monotonous. As you say I need to listen to my body and give in and rest when I need to. Has just felt strange this cycle as I have had to take more rests than I did in the better weeks of cycle 1 and 2.
I have also spoken to work about doing one day a week doing things that are not time sensitive so I am not under pressure. I feel like I need something else to focus on other than BC and treatment. I will then have a bit more of a routine although the weekly paclitaxel cycles starting tomorrow will give me that too. Sad day when hospital visits will be my main weekly outing!
Hope everyone is as ok as they can be this week. As you say @hopeful1974 each completed cycle is another one off the list. Tomorrow is week 9 of chemo out of 18 for me provided my bloods are ok so looking at it I am now at the top of the hill heading down the slope which is a good thing.
Take care everyone
I definitely found that I was able to do progressively less during my better week with each cycle. I’ve had to really learn to listen to my body and get used to putting my feet up. I also find it hard when my default is being really busy, doing housework, cooking etc. After the third round, it took me 9 days to recover, whereas after the first cycle I did a long walk on day 4!
I am aware that different chemo drugs hit you differently so when I am on my next ones (a taxane plus Herceptin), I am expecting different side effects but probably still lots of tiredness and rest needed.
Keep going everyone. We are doing so well getting through this and each chemo is one we won’t have to do again! Xx
Thought I would share my experience with the injections. My chemo is a Thursday and after each of my 3 EC cycles I had to take the injections for 7 days starting on the Saturday after my treatment on the Thursday. I found I really had to psyche myself up to do them even although it only took seconds to do. I took mine around lunchtime each day. The first time I did it I was planning to inject myself mid afternoon (can’t actually think of the logic behind that now) but then on the first day I felt like I was putting off the inevitable and thinking too much about it so did it around 1.15pm and then had to stick to that as I was told to inject at the same time each day. I too had pains in my back and chest on the last injection day of my first EC cycle. Was so worried I phoned the chemo team who told me the same that it was the cells reproducing and being stored in my bone marrow. I was told there is an area like this in the chest which explained the pain but at the time I was worrying it was my heart which in turn led to more anxiety! I didn’t have the same issues in my second or third cycle but have found my joints aching more particularly in my legs. As I am now going through menopause though it is hard to know if it’s a chemo side effect or a menopause issue. I know some of the ladies on this forum have not had to take the injections all the time. I was just given them at the hospital and told I would need to take them so I don’t know if this means my cell count was low in the first place but it wasn’t an option for me not to have them.
On my better week last week I was able to go out walking more however not sure if it’s because of that or the cumulative effect of the chemo but I have felt generally more tired this time round on my better weeks. Maybe I am just kidding myself on that on the better weeks I should feel “normal” and have maybe been doing too much. My coping mechanism has always been to keep busy but perhaps cleaning all the skirting boards was a step too far! I suppose I need to remember that I am going through treatment so my energy levels won’t be as they were pre chemo but it makes me feel pretty rubbish when I get the energy slump as it takes me back to the week following chemo when I have no energy at all.
Hi @hopeful1974 your right it’s so hard when we are managing side effects also from the chemo . I feel side effects are worsening due to accumulation of chemo / injections . I’m glad you have felt better these last few days. Sorry you had to have the injections for 7 days too. What time of the day did you do your injections please ?
Sending love xx🌈
I was given filgrastim injections for 7 days starting on day 3 of each cycle of EC. The first cycle they didn’t seem to affect me until day 7 when I had really weird chest and back pains, which the nurse practitioner told me were my bone marrow making the white blood cells. I was able to take paracetamol to help and it cleared in less than a day. The other cycles, I had diarrhoea after the nausea subsided and never felt better until I had stopped the injections. This could have just been a coincidence. It’s so hard to tell when you are experiencing side effects from the chemo too. I definitely had nausea and diarrhoea for longer during my third cycle. The effects seem to have been cumulative for me. This then all combined with anxiety symptoms for me which I am now treating with antidepressants. I have been feeling better for the last few days, so am very hopeful they will do the trick.
I hope you feel better soon. I decided to stick with the injections as I thought it was better not to get an infection and just took ibuprofen or paracetamol to help when I felt bad. Xx
Hello everyone and hope you are all managing to have a lovely Easter Weekend 🌼
Just wondered how you all are when you start filgrastim injections . I had treatment last Monday felt like I was going in the right direction until I started injection Friday night . Since then every day felt achy / headaches/ nauseous/ bad tempered and not sleeping well at all . These symptoms seem to have appeared on the Saturday after starting injections last 3 cycles , I never seem to turn a corner until I finish the five day course. I usually have injection on a night just wondered when any of you lovely ladies have yours ? I’m seriously considering not having It tonight. I saw the list of foods @CrazyCatLady @kindly placed on the group which can help raise neutrophils. So going to stock up also need to get some of these tuc biscuits . Thank goodness for curry pot noodles too 😋 .
good luck to all having treatment this week will be thinking of you 💕
Hi @CrazyCatLady / Sam. I ordered knitted knockers as soon as I knew I was having a mastectomy! The Birmingham branch are (were in December) still fulfilling - go to each individual branch to check. I got a swim scrunch while I was at it.
They, like softies just aren't heavy enough to stop my bras riding up. I brought a big boob booster/fillet thing. That's lighter, yet still not heavy enough. I think it'll be better than the scrunchie when I get back swimming. I can't wait.
I love pickled beetroot and hate fresh- tastes like mud. I manage 2.5ish most days and can do 3l to flush the steroids out. For all the good it does. 🙄
About to stink the house out with a nice bit of smoked haddock. I might kedgeree mine - I've always got some of those Merchant flavoured rice packets in, bound to be an Indian one lurking around.
Take care. 🤗
Love AnGELa x
Hi @Gelbel - so far so good on the new anti-sickness tablets and yes, I get that hungry/nauseous feeling so rather than a tablet I eat something. And yes to Ritz Cheese crackers....with a dip or cream cheese with jalapenos. I'm terrible at getting my 3lts in a day but probably do a good 2ltrs when I add in my 2 large morning coffees!
Ended up avoiding the pasty as, like I said, don't normally like them so not sure why I would want to eat something I know I don't like lol 🙂 Still never, ever eating cottage cheese ever again after my mum force fed it us as kids with our summer salads...oh and beetroot too yuk! Least now I can avoid the beets due to the allergies lol 🙂
Glad to hear you have a good week off and well done you on venturing out to give a presentation! There's no way I could do that at the moment....I'd have been a sweating wreak!
Have you checked out the Knitted Knockers site yet...they are free and you can get to your correct size and preferred weight, and they also do swimming ones which are filled with shower scrunchies so they don't get water logged and are easy to try. Not sure if they're still fulfilling orders thought as their site is saying orders closed but that was back in Nov 2020 (https://www.knittedknockersuk.com/). Although their Facebook page looks to be open for business/orders (https://www.facebook.com/knittedknockersuk/).
Take care my dear xx
Love - Sam x
Hi there @Teagold - think my 'super admin' head must still be alive in some shape or form lol. If it's not written down I've now hope and still have the habit of note taking after spending years having to do verbatim management minutes 🙂 Guess it's not a bad skill to have...they always used to be astounded that I could type as they talked and got everything covered.
Sounds like they are taking good care of you at your unit...even if you do feel light a scatty brained school kid lol 🙂 It's just the good old chemo brain doing its stuff xx
As for protein helping with neutrophils I think it was just something I heard or read about...but did find this which pretty much sums up my whole diet as carbs, protein and dairy are about the only things I can eat due to my allergies.
I really am allergic to ALL the healthy stuff....gimme a jacket spud topped with cheese along with a yummy steak and sour cream or a lovely chip shop supper and I'm a well-happy bunny 😃
Sun came out a bit here although still rather chilly with the wind blowing, so managed a little walk around the block. So already up to 4,700 steps for today and may do another jaunt out later as 'roid head not letting me get any naps in yet (despite trying).
Hope you manage to get a good rest though xx
Love - Sam xx
I hope everyone who had treatment this week or yesterday is feeling comfortable and as side effect free as possible. 🤞 I hope your new anti-nauseas work @CrazyCatLady
Mmm Cornish pasties. I'd love one but I don't buy pastry goods as it's the one thing that upsets hubby's Crohn's. I had a Greggs bacon roll and coffee for breakfast at one of my M62 services meets. I picked up a reduced of M&S Extremely Chocolatey hot x buns. So glad they were reduced. Yuk - too sweet and sickly and sticky.
I buy those salted or rosemary crackers that Aldi do for a salty hit. I found some Ritz biscuits in one supermarket. Can't remember which one I'm afraid. They come in useful, though they are too moreish. 🐷
I've had a very lazy, feeling well, week off work. Does anyone find when they are hungry they get a blugh feeling in the tummy? Once I eat, that feeling goes. It's not a hungry feeling but a toned down, could be a 'slightly nauseous, if I think about it' feeling. Weird.
@CrazyCatLady / Sam
your post deserves a 👏👏👏 for replying to everyone and making notes - I’ve often thought I should do that so I can remember everyone’s real name vs post name and who’s at what stage etc but I keep not getting round to it!
On the story of leaving hospital with my port needle hanging out of my chest (😳), when I turned up yesterday the nurse gave me a bay right next to the nurse’s desk so that she could ”keep an eye on me this time”. So it’s just like being back at school and right under the teachers nose. I still managed to nearly shoot off without collecting my chemo book - doh! I’m getting scattier and scattier.
Congrats to you Sam on hitting the halfway point too. Was interested in what you said about neutrophils and protein - does it help? Mine were low yesterday, still ok for treatment and I’ve got the injections this week but happy to try anything extra to boost them.
Spent most of the morning dozing on sofa, definitely a low energy day so just getting as much rest as possible. Hope everyone else is having a good/relaxing day.
Good morning all
I too have just hit the halfway mark (3/6 yesterday)! So if all goes to time, last one in 63 days yay!! It does definitely feel like the downhill slope now. Also good news again for me this week as still managed to avoided the filgrastim jabs (neutrophils actually went up a bit....phew!). So guess keeping up on my proteins is helping this along so fridge/freezer getting stocked up with steaks and chicken again this week 🙂
Apologies in advance, but on the lovely steroid buzz this morning so will be a long rambling post (so far 4 x dex with another 4 at lunchtime) plus 1 each of Loratadine (minor hives breakout as had 'naughty' food last night as was starving hungy after chemo - note to self, chicken curry is a no-go food!), co-trimaxade, ondransatron (new anti-emitic) and 1 Lansoprazole. Nausea seems to be under control but chemo trots yesterday evening hence also had imoduim before bed last night and popped a Nytol to see if it would allay the steroid wakefulness.
Apparently had 8 hrs sleep....but only 2.4 of deep sleep and woke up 7 times in night before giving up and rising at 6am. Will keep trying with the Nytol though. Not sure I'm a candidate for the Calm apps though as listening to rain will only make me need the loo more lol! Also himself's snoring doesn't help much!
I've been reading through all the posts I've missed so again apologies if I miss anyone but here goes with my replies (have to get my notebook out to do a list lol):
@hopeful1974 Sian - had my onco visit on Tues and plan looks like will do review now after cycle 4 around end April/early May. But had to actually point him to where my right lump was so looks like shrinking even after only 2 cycles! Still nothing palpable on the left one though so no idea how this one is doing! So it's the waiting game now until I've got one more cycle under my belt. Also will be due my heart monitoring and poss another breast MRI (but said may wait till I've finished all chemo before doing the breast one). Good to hear you managed a good sleep last Friday - takes me until at least the end of 2nd week after to get caught up.
@LottieLaing - Linda - yep totally agree ref sleep issues and hope you got a good walk out with hubby and dogs last weekend (before weather went downhill mid week!). I broke shielding on Weds (only 1 day early) but weather was good so did garden visits to see my mum and then on to see my dad and it was so good to sit outside in the sunshine and have a good old natter with everyone. Even managed 2 hours of visiting without needing the loo....always a plus point!
@Teagold oh so sorry you got the Palb2 news but looks like you are dealing with it really well. Sorry but you did make me chuckle about leaving the unit with a needle sticking out of your chest....I just turn up for appointments a day early (for my first breast MRI lol). Good luck with starting your EC but like me, you should be ending chemo by June so just in time for some lovely summer weather (hopefully).
I too am totally off the choccies...so none for me just yet (can manage a nibble or two in week pre-chemo though so any I've got will wait till then)
@ktruffin thanks for the Penny B info was really useful so reviewing this quite regularly!
@Kaz11 yay to halfway point for you too and hoping you are managing to get some better sleep now. And good luck with your weekly pax.
@Gelbel - Angela - you also made me chuckle with you trying to have warm pineapple juice with raw egg (ugh!) but it would have been a good protein drink lol 🙂 Hope you get sorted out with your steroids too....I'm on a super high dose of 8 tablets x 3 days but they do seem to manage my sickness for these days, it's just as soon as I'm off them the old anti-emetics didn't cut it, hence now trying out the ondransetron and so far so good as only need 2 per day of these (but it is only day 2 as at today). Hope you do get to see a 'dishy doc'....no luck for me so far on that score haha 😂 Oh and good luck to you too for starting weekly pax.
@Linda1967 - so get you about the 'roids buzz...on it now, can you tell lol?? Good luck for your THP - agree with others that the H&P seem to be good ref SEs...just the taxol/taxene regime seem to make us suffer but at least we know there's and end point to it.
@Leftygurl - good luck for your port removal bet you'll be so glad when it's gone. Glad I opted for PICC line as it's been so good for me so far and not had any issues ref clots or line movement. Hope you're feeling better after your last cycle too x
@Rainbow70 - glad to hear you've had your last EC and good luck for the next sessions - nearly there x
Finally, for those who've mentioned about the various body hair issues....my legs look like I'm morphing into a yeti but daren't shave them so resorting to tweasering out the longer more noticable ones. Lady garden is still fully intact apart from a central bald spot....a reverse Brazillian anyone? And underarm hair has been shedding but still the odd rogue one left so tweasering these too. Still holding on to lashes and brows although thinning a bit, but been told that as I'm on docetaxel likelihood is they'll fall around 6 weeks after last chemo....oh joy!
OK so now off for my first nap of the day but may venture out shopping later as really fancying a Cornish Pasty (which is odd as I don't normally like them!) I blame all the food adverts and just go, oh really want that now....well that and the steroids haha xx
Hope you all have as good as day as you can and well done to all of you who've got to the halfway stage...we're all getting there, slowly but surely xx
Love to you all - Sam xx
I highly recommend the Tuc biscuits. I had not eaten them since I was a child but loving them now. I put philadelphia cheese on mine and have them for lunch or a snack. I also put grapes on top of the cheese. A nurse friend recommended them to me as the saltiness encourages me to drink more fluid rather than trying to force another glass of water down without eating anything. The grapes work for me to keep certain things moving! Used to love spaghetti hoops on toast as not a baked beans fan so will add them to this week’s shopping too. I am always looking for something simple like that post treatment when my appetite is shot. Not sure if it will be the same after my paclitaxel on Thursday. Feeling apprehensive about what joys this treatment is going to bring to the party.
Glad you like your gym wig @Teagold. I love mine and an wearing it every day. I got the mid length praline mix and tie it back in a pony tail as advertised on the site. It’s a bit longer than my original hair but feel more like me when it’s on. Can see me wearing it more than my “dress” wig. It feels secure with the band at the front and the velcro adjustment at the back. Mixing it up also with different coloured headbands over the top. I can’t remember now who recommended the wig so apologies (chemo fog brain!) but can’t thank you enough. It’s given me some confidence back.
Happy Easter weekend everyone. I’m definitely going to eat chocolate while I still have the notion. First creme egg of the year literally inhaled yesterday!
Wishing you all the best for the next days. I hope you find the right foods to spark your appetite at the right time. A friend made me some focaccia bread with olives and sundried tomatoes and it has been great when I’ve not fancied other things. I have been having Jane Clarke Nourish drinks to supplement my food intake as they contain quite a lot of calories and I’m trying to at least not lose any more weight. Although my last chemo was three weeks ago yesterday, my appetite has not really returned properly. I think it is mainly due to the antidepressants I have started this week. It’s annoying as I feel like that has set me back a bit but do see that long term they should help me get through the rest of my treatment. After surgery, I will have three more chemo sessions with Herceptin plus 4-5 Herceptin sessions after that so I need to feel good about this for a while yet!
I hope everyone has a restful weekend. Xx
Yikes - obviously that should have been “hope it does NOT clobber me as badly as last time” - don’t want to tempt the side effect demons by posting the wrong thing!!
Well I had my treatment yesterday due to bank hol so now have woken up convinced it’s Saturday. Also, steroid buzz had me up late night online shopping buying a juicer - not really sure why or where that came from!
Did any other Friday ladies have to go in yesterday? Perhaps for those with three week cycles the bank hol didn’t clash - but anyway, hope everyone is doing ok today. Yesterday was my carboplatin as well as paclitaxel so I’m sticking with the anti nausea meds and hoping it does clobber me as badly as last time.
Getting into quite a bad habit of eavesdropping the dietitian as she goes round talking to other patients about what suggestions for what to eat and how to manage nausea. Last time she was chatting to someone about tuc biscuits and I thought fab idea and got four packets on way home. Yesterday she was suggested Heinz spaghetti on toast and I started rumbling with hunger (rare) so immediately added it to my next online shop.
Oh and got my gym n swig wig yesterday - I LOVE it, and miles cheaper than the others I’ve been looking at. Thanks everyone for that suggestion. I got the smooth bob style but v tempted to get a wavy one too or a hat with hair thingy.
Right, tea and telly...
hugs to everyone for a restful Easter weekend and if - unlike me - you still have a taste for chocolate, hope there’s plenty around!
I’m chuckling at the hair conversation - same here re eyebrows, they seem to be sprouting in all directions but I can’t bring myself to pluck as I’m taking the view that any new hair growing is good. I took a photo of the top of my head today and my goodness I look like I’m auditioning for a part in Name of the Rose - quite a pronounced bald spot right on top, so had to be careful in the sun today so as not to have a glowing red burnt patch.
@Rainbow70 - I think I was referred for the gene tests by my surgeon but I’m guessing it was all agreed by the multi disciplinary team. I got the impression everyone thought it most likely to be negative because I didn’t have a particularly “strong” family history, so I’m not sure what made me a candidate for it - maybe my surgeon does it routinely, I’ll ask next time.
Ordered my gym and swim wig today so excited about getting that to cover up my bald patch...
Oh you made me laugh there with the hair discussion 🤣 as you say the things we talk about on this forum!
You reminded me that despite being told my eyebrows wouldn’t grow back in at the moment that silver grey ones are actually growing below the dark ones. I would normally be plucking them out because they are not within the natural arch however I am actually going to leave them there in defiance for now as I am just amazed that they have appeared at all. If only some similar activity was happening on my head...
I hope you are all doing ok and coming out of the side effects of your latest cycles. 🤗
I'm joining the weekly Pax brigade, starting 9 April for 9 weeks.
I didn't have my onc consultant appointment today. One of the Dr team called a few hours before my appointment time and said that unless I had in-the-moment side effects I needed help with, it would be a waste of my time as I'd need to go next week for bloods ahead of the chemo. So we rescheduled to next week but he did confirm the Pax and noted my major steroid reaction/concerns. He assured me that even 1/3 dose will be so much easier. I explained 1/2 dose wasn't! Anyway he agreed a big discussion is needed. I'll see him rather than my actual consultant as she has another clinic on Tuesday - seemed very switched on. I need to ask my chum if he's as dishy as he sounds!
Talking of hair. OMG. I've never really had eyebrows - never over plucked, they just never grew. I probably have 3 hairs each side I pluck once a quarter. They blooming well have grown this week. Today, I put some slap on as I was going out and saw 10s have grown. And you can see them (well I can with a magnifying mirror) and they are all over the place so they are going to have to go. That seriously is taking the mick.
My tiny little 1" wide, 3 hairs deep fringe (yes I am counting), grown recently, has changed from white to dark. My forearm hairs vary between none or a few. Leg hairs and underarm gone and stopped. You know where looks like I've had a visit to a salon with a little strip left. I'm rather proud of how tidy!
Blimey, the things we discuss. 🤭
Love AnGELa x
Hi @Kaz11 Not confirmed yet the Regime for the filgrastim injections but all trusts seem to be different so see what yours says . I’m not even sure how often will have bloods checked either . I just thought if it’s 3 cycles Over 9 weeks would have injections 3 weekly and bloods ? I don’t like the side effects injections bring , well done for administering them yourself though . I’m a nurse and I can’t even give myself the injection Ive trained my hubby up to do them . My underarms has stopped growing too .. yes very strange .
Totally get what you mean re all the meds we are on now when all I took before was ibuprofen for a sore head!
Hate the injections too. Takes seconds but have to psyche myself up each time. I thought they were done with after EC but maybe not....
Still have hair on my legs a bit and still on my arms fully. Underarms it has stopped growing. Strange how if has stayed in the places where I wasn’t bothered about.
Hi @Kaz11 your right will never know if diarrhoea caused by treatment or something you ate . But I suppose at least you have loperamide to help if happens again. I was a bit constipated last time so may need to take something tomorrow as all this medication can cause constipation. I know it’s not pleasant to talk about but my word the burning sensation is not nice 🥲. I only used to take paracetamol before bus I seem to have a right collection of meds !.
i get what you mean about the clothes , I have a little collection of clothes I wear for hospital and when all my appointments are over I’m getting rid of them ! I found it a hard decision about not capping any more and wasn’t sure if I chose to have my hair clippered on a day I was feeling really low. But it’s done now so will see if start to lose more now. I’m hoping to hang onto eyebrows /lashes too 🤞.
Has anyone else Kept hair to legs ?xx
your right about more of a routine having the weekly treatment and I guess until we start it we won’t know how the side effects will be . But it’s good to hear a lot say it is kinder 🤞 I asked the nurse yesterday if I would still get same supply of anti sickness /steroids and she said yes . Need to confirm filgrastim she seem to think will get 3 x 5 day course spread over 9 weeks ?? Hate those jabs , never seem to feel right until I’ve finished them.
gelbel I hope you are feeling better after your last EC cycle 💕 and Thankyou for the skin regime cloths . Will have to look in Aldi at the hot cloths and check beauty pie out . I found a blog on hear from lady called Laura she advised Jennifer Young products .
@Teagold sorry you have had the extra worry of waiting for your genetic results . It is reassuring your family will be screened now too and kept an eye on . Do you have a date yet for your surgery ? Sending virtual hug 💕 would you mind if i asked if it was oncologist or breast consultant who requested genetic testing . I have asked about this but I don’t seem to be getting anywhere . I’m researching nice guidelines now about it for when I go to my next oncology appt .
Sending love 🌈xx
Lovely to get your messages.
Was speaking to a nurse friend today and she thinks the diarrhoea sounds more likely caused by something I ate rather than the chemo but I suppose I’ll never know. I blame everything on chemo these days (rightly so in my opinion as never had any of these issues pre BC). Anyway called the GP surgery today to ask for a prescription for loperamide so that I have it. So will have lactulose to get things going so to speak and loperamide to stop the flow! Honestly you couldn’t make it up!
As I mentioned before I get a whole load of take home anti sick meds including the steroids which I’m told have anti sick properties too but not sure what the situation will be on the weekly paclitaxel. I am kind of looking forward to the weeklies as it’s more routine and will hopefully have the psychological effect of crossing off the sessions quicker but I know what you mean re the nausea. For me it’s after being at the hospital I feel it. If I think of what I ate that day in the hospital it turns my stomach. Silly as it may sound even after I’ve washed my “chemo” blouse when I look at it or go to iron it my stomach turns too. Similar feelings about the cold cap. Not so much when there but thinking about it makes me nauseous. Still not sure about continuing with it. I have some hair left but feel I look like a very poor version of my former self. Thank goodness for the gym wig which I am now wearing daily. I know the cold cap encourages regrowth not that there is any sign of it for me right now so starting to wonder if it’s worth it. Certainly was harder the last time round. If I don’t though I presume the last of my hair will fall out. I presume the cold cap doesn’t affect anywhere else and only your head which has clearly done diddly squat for me or maybe it’s the reason I still have some. Hoping to hang onto my eyebrows and eyelashes which are staying with me at the moment. Nurse said I would be very unlucky to lose them too but hey I got BC the same as all the other lovely ladies on this forum and I would say that was pretty unlucky too!
@Kaz11 @hopeful1974 Your right half way through is a massive milestone to reach and dealing with also dealing with the psychological effects . We are all heading in the right direction and ticking the cycles off ♥️
I just need to get my head around going for the treatment weekly. As soon as I go to the unit nausea just overwhelms me and I just can’t wait to get out. Need to get first one out of way to see what time frame is like and 🤞side effects are kinder .
arranging walks with friends sounds good ..enjoy 💕
Hello everyone hope you are all doing ok 💕
@hopeful1974 hope you are doing ok and welcome to this lovely support group 💕good advice regarding anti emetics , I had my 3 rd and last cycle of EC yesterday . Taking anti emetics regular as prescribed, I didn’t cold cap this time and I don’t appear to feel as light headed today as I did when I cold capped . Still have headache it’s so hard to drink fluids when nauseous ☹️Nausea still bad but tablets are taking the edge off . Everyone does responds differently to treatments.
@Teagold @That’s good weekly paclitaxel side effects has been kinder for you. Yoga tips sound good , I need to get back into yoga . I have 9 weekly paclitaxel next.
I need to read all the posts and get caught up , Im so slow at posting / typing !!
hope the sun is shining where you are , I can see it from the settee but it’s better than seeing rain outside .
sending love 🌈xx
My tips for EC are: take all the anti-nausea meds and don’t be afraid to ask to change them if they are not working. The steroids were the most effective for me at suppressing the nausea. I had to take Imodium for the diarrhoea I had after the nausea had stopped. Everyone responds differently and my neighbour had a pretty easy time on EC. It probably depends on the dosage and frequency too. Xx
Hope everyone as ok as possible today. @Linda1967 I totally know what you mean about that trippy feeling and it’s how I’ve described it to the nurse - I didn’t know whether it’s the drugs or the steroids, but it’s sort of a buzzy jangly feeling which means I can’t concentrate on anything much. This week I haven’t had to take steroids so been much better. Back on steroids next week when I get my next carboplatin so already not looking forward to that... I hope everything went as smoothly as possible on Mon and that you’re getting loads of rest.
I have to say that for the weeks I’ve had just paclitaxel I’ve been mostly ok - sleeping, eating, getting out for a walk and sometimes even a run (though just a short one and really hard going!!). My bad week was one of the double dose weeks so I think it was the carbo chaser that got me. So for those going on to paclitaxel or equivalent I really do think it’s much better compared to the side effects you describe for EC. I’ve also found it actually good going in weekly, the time does clip along and I’ve got into a rhythm now. Sadly I’m going in the other direction, with 4x fortnightly EC starting some time in May so I’m pretty apprehensive about it. But - it is what it is, will just have to try and get through it as best I can.
@hopeful1974 I found some good online classes for yoga, Pilates and meditation at Breast Cancer Haven online - free or you can make a donation of your choice. I think there are different levels for the Pilates.
Thank you for your messages. Totally agree re the psychological effects of the halfway stage. That’s what I have been trying to tell myself so actually on the countdown to 8 April. Like you I feel at that time I will be at the “hump” of the hill and then I will be counting down the weekly doses on the downward slope. Although I have to get a few sessions of radiotherapy after this the chemo was always going to be the toughest part for me so my focus is on getting through that.
Like you have also arranged some walks with friends this week. Last week would not have been an option with my low cell days but this week I need it for both my physical and mental health too. I find the isolation hard so am craving some social interaction. Thankfully the wild weather of the weekend has subsided and we are due a dry spell over the next week so I can walk each day.
Take care and have a good day.
I was also just thinking that halfway is a big psychological milestone and the time hopefully won’t drag as much if you know you are past that point and counting down to the end. Xx
I can completely relate to this. I am 2.5 weeks after my last chemo and have been feeling quite a lot better for the last few days. I’ve started a daily walk with friends which has helped my mental and physical state of mind. Not overdoing it though as I’m mindful that I need to regain some weight too! My appetite is improving and I’m going with foods which spark it. I have heard that the Paclitaxel can be much easier than the EC. Different side effects but more manageable. I hope this is the case for all of us!
Love, Siân xxx
It’s been really interesting reading all your recent posts. I had my last EC on 18th March and can relate now to the cumulative effect. I seem to have had an additional new side effect after each cycle and it seems to have taken an extra day each time to feel more like “me” again so it’s good to know it’s not just me. My joyful extra last night was dreadful diarrhoea when I have had the exact opposite issue all other times. Just took me completely by surprise then made me anxious and hey presto rubbish sleep AGAIN. Mind you the noise of stormy winds and then a load of seagulls didn’t help - why are birds awake so early in the morning?!
Start my weekly paclitaxel on 8 April so that is my next goal as by that time I will be at the halfway stage in terms of chemo treatment time (week 9 of 18) provided my bloods ok to get treatment obviously.
Friends keep saying the time is going so fast. It so isn’t for me and just want it over as someone else said. I find the time in between the 3 weekly cycles drags so hoping it will feel better with the weekly doses. Also hoping it’s not as hard on my body as the nurses say but am feeling nervous the nearer it gets about how it will affect me.
Big hugs to everyone and hope like me you are not getting people telling you about how excited they are to get their hairdresser appointments! Lucky them having hair - if only 😢
I know exactly what you mean about the feeling that somebody has removed the part of my brain that is useful.
Had EC, pactitaxel and Zoledronic acid last Thursday and feel pretty wretched this morning, thank god I’ve got 3 days of a/l left to take before the end of March so only working Thursday this week which is a bonus seeing the improvement in the weather, just hope I’ll feel well enough to enjoy it!
At least I’ve got a date to remove my portacath from my chest as it’s been a pain since day one of installation, had neck ache after every night on the side where it loops up and down to the heart and of course the main problem being the redness then bruising over the site, tenderness, swelling to the point of hardness and the nurses have come to the conclusion that my body has rejected it. I can not wait till it’s removed, counting down the days, 15 days to go!
I think the sofa will be my best friend today lol
Hope you all have a good day whatever you’re doing
@Linda1967 Good luck today. Sending you lots of positive vibes - not in a trippy way. 🤗
I'm pinching your brain etc. words to use with my onc consultant tomorrow when we discuss Dox or Pax. You have nailed what I've been trying to explain for weeks. They are duly noted in my little book.
The more I am hearing of Taxol the `happier` I'm feeling about it.
I'm just about back to me after my third and final EC. Look forward to a productive week off work - I've such a long, gentle, don't push it, to do list. And I cannot wait to meet the girls in the park this evening. Hope the weather picks up as promised as it's grey and very windy out there. #NotGoodWigWeather
Better eating regime starts today!
I hope everyone has a good week.
Love AnGELa x
You are on the same regime as me, although I am now having a break for my surgery but will be back on a taxane plus Pertuzumab and Trastuzumab after that.
With then EC, I found the effects to be cumulative and on the third cycle, I had 8 days more or less in bed as I had diarrhoea after the nausea had gone (the nausea was well-controlled by the drugs by that time as we had tweaked them). I also wonder whether the G-CSF injections were to blame for some of the later symptoms as I had them for 7 days starting on day 3. I have heard from a friend who went from having a tough time on EC to Paclitaxel that the two were like night and day for her and that she only had one really bad day on the Paclitaxel. She didn’t had H&P along with it, but it has given me some hope. My nurse also said that H&P are usually more manageable in terms of side-effects.
I would have hope that the next ones will be easier and if they are not bearable, then the oncologists are there to adjust the doses.
I hope that helps in some way. I have just had to have a break by having my surgery first as I was losing too much weight and I am now rebuilding my strength and trying to eat as much as possible before my op.
I am also looking for an online Pilates class to start to try and work on my core strength as I see this as an important thing to do when I have spent so much home horizontal in bed!
Wishing you all the best for today. It will be good psychologically to know that this is the last one.
Love, Siân xxx
Hi Linda ... I’m sorry you’re having a strange time on EC I certainly agree it messes with your head at times.
I see you are doing weekly chemo for the 3? Is this an option as I’m starting it on 30 th April but 3 cycles 3 weekly ... I didn’t know you could get it weekly.
Hope tomorrow’s cycle is a bit easier on you. Xxx
I have not posted in a while. I read your messages most days.
I have my third and final EC tomorrow. I have found it really hard in ways I didn’t expect. Nausea is bearable as long as I keep food bland but the feeling that someone has removed the part of my brain that is useful and I have been sent on what I imagine a bad 1960’s psychedelic drug trio would feel like is really horrible. I feel like the real world is within sight but can’t quite get there. It lasts for about four days. Don’t sleep at nights as body is agitated and can’t settle but mind is so mushy I can’t focus to watch TV so listen to stories and meditations constantly . The first three days after chemo mind is as high as a kite ... had a steroid reduction and slightly better last time. I can’t wait to be done with this.
Next for me will be 12 weeks of taxol, herceptin and pertuzanab. The nurse said most people find it more bearable... I hope so.
My thoughts are with all of you. One day at a time.
Thanks to you all re the sleep tips. I have tried most things including the Calm app, which is wonderful but still not enough to send me off! I have a lavender spray so will definitely give that a go. I am feeling a lot better today actually, and although I did have to take the sleeping tablets at night, I had a full night’s sleep and have had so much more energy today. My appetite is back, so I know it was the antidepressants which were giving me the nausea. Not what I need on top of everything else!
Can I just say that you are a lovely group of ladies and that I look forward to continuing my journey with you. I will have 3 more chemos after my surgery, plus the Herceptin, although I have heard that that is not as harsh usually as the chemo.
Hugs to you all today.
Oh @Teagold what a unwelcome result. As you say, at least you and your girls know and the professionals will be all over it. And science is advancing all the time.
As for walking out with the port in. I thought I was going some putting a glass of pineapple juice in the microwave this am. Thankfully I didn't turn it on. I nearly drank the raw egg I was going to poach in the microwave though! 🤭
As @Kaz11 has said, at the risk of sounding blazé, surgery is so much easier than chemo. I know a double will throw up additional practical problems. You will cope. I'm not sure if the recovery will be longer. Get gallons of cream for massaging your scars - I used Garnier intensive 7 day shea hand cream by mistake after a few weeks. I've been using it ever since. Oh boy, it's good: sinks in straight away so no material stains. Being flippant you won't have to double the massage time - do both at the same time. 👐 All part of my bed routine now.
Talking of which, @hopeful1974. I agree with lavender spray. Creighton's the UK hair and beauty brand do a lovely one. It helped a colleague who was struggling to sleep in lockdown 1. Usual advice on no devices before bed. Do you have a smart speaker? I've used a mindfulness skill to listen to the sea or white noise when I've struggled.
Google pressure points to help you sleep. I will rub away at the web between by thumb and finger when I've a headache. It works so might be worth a try.
I'm off to Aldi this evening - will see if they have any frozen pineapple. Ooooh, I could just eat a pineapple yoghurt.
I hope you all have the weekends you wish yourselves. 🤗
Love AnGELa x