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January 2021 Chemo Starters

792 REPLIES 792
FlorrieBee
Member

Moving on...

Thanks @donkeywoman and so good to hear you are moving on and getting back in to the swing of work, a little normality I am sure will do you the world of good and hopefully that will continue as an upward trend, it's really positive news.  Also pleased that the Herceptin seems to be going okay. I would like to say a massive thank you to you, your posts over these last few months have been a great source of support and inspiration through the ups and downs.  I am sure it is not a place any of us would choose to be, but this forum has been such a reassuring place to come when we feel the need to talk to someone who will understand exactly what it is we are going through.

All the very best to you going forward, thanks for your helpful posts, good humour and pics of those lovely donkeys, sending love, positive vibes and big hugs 😍 xx

donkeywoman
Member

Re: Recommendations?

Hi @FlorrieBee and everyone. Sorry, not much help about your sore face - have you had some decent advice by now and it's improving. @Pesto - good to hear from you, have wondered how you are, hope things are as okay as they can be?

I'm doing pretty well and am back at work now. I'm almost back up to my hours, but using holiday for odd days here and there for some extra rest. I was classed as clinically extremely vulnerable by Occupational Health still which was frustrating, but think I am okay to see some patients, who are known to be covid neg, by next week. Herceptin seems fine so far, 3rd one post chemo on Monday... And hot flushes and maybe some more achiness is all I've noticed from Tamoxifen. So if that stays the same, I will count myself lucky!

How about you all? It's quiet on here, so hopefully that is to do with moving on and getting busy...

I am kind of signing off today - I'm not feeling I have much to share or offer and my time is much more filled now. I'm sure I will still pop in now and then to say hello and to see how folk are doing. But for now I would like to thank you lovely women for the humour and compassion I have found on this thread. We have all gone/are going through a lot and the companionship that this forum enables seems important. It certainly has been for me, so thank you! 

And all the very best in the near and far future

Hugs all round and fingers crossed for a sunny, covid-free summer xx

FlorrieBee
Member

Recommendations?

Lovely to hear from you @Pesto how are you doing?

Just wondering if any of you out there have any recommendations for a sore face? I have had plenty of sore bits with each round of chemo, mouth, nose, eyes, body etc. and each time have had red, puffy patches on my face. They have cleared though after a few days, assume it's a combo of chemo and steroids. This time though it does not seem to be getting any better and is really sore, it almost feels like my skin has been burnt.  Any suggestions for something soothing? I need to be a little careful with what I use as some of it is on my cheekbones, quite close to my eyes and they are also really sore.  Any ideas appreciated.

Hope everyone is doing ok ☺ xx

Pesto
Member

Re: Photo for a smile

 

Hi Guys,

 

Long time no speak.  No excuses for being off radar.  I hope you are all as well as can be expected, hopefully much better.

 

I know I have missed loads and loads, 

Big hugs ( three months worth )

 

Gilly

 

xxx

 

 

 

FlorrieBee
Member

Re: Photo for a smile

Fab picture @donkeywoman, they are just too cute!!  Glad things are ticking along ok for you and long may that continue, please keep us posted.

As you say, I do hope that everyone else is doing ok and of course, if not, then it's ok to say so.

I cannot believe how wiped out I have been with this last round, exceptionally fatigued and sore everywhere.  But.... keep thinking by the middle of this week I should hopefully have turned a corner with it, fingers crossed! 🤞 Hugs everyone. xx

donkeywoman
Member

Re: Photo for a smile

My attempt at posting a photo - not sure why it is so big! But here are donkey woman's donkeys! They kept me going through chemo and are still keeping me smiling. 

So glad to hear stories of finishing chemo, hair growing and generally people making progress. I just hope that folk who aren't posting at the moment are doing okay - and that everyone knows they can still post if having a bad time. 

Things are going pretty well for me, I started back at work, on a phased return, last week and, though it's really tiring, it's good to be back. And Herceptin jabs and Tamoxifen tabs don't seem to be causing problems... yet! I'm quite achey and hot flushes wake me up at night, but they were happening a bit before all this.

All the best to everyone xx

donkeywoman
Member

Re: Photo for a smile

Hi all, what a great picture @FlorrieBee ! definitely one to make you smile 20210428_123511.jpg

Gelbel
Member

Re: Nearly done!

My hair is doing well, thanks @Mumboo About 2-3mm and stubs of eyelashes, which I'm grateful for as I'm out tonight at a place where false lashes would look out of place. And a pigging nose hair, a thick blonde one that stuck out at 90° - that's taking the mick.

Don't know what brand of Biphosphanate tablets- at the moment it's given every third whole dose (so with #2 EC and #1 and 6 of Pax) via a generic name infusion. I will take alongside whatever hormone tablets I end up on. Anything to up my (pants) 5 year survival rate.

I hope the school run went well.

@Lewy2803 yeah, all done. How fabulous. OK, so there's other stuff to come. If it's any help, my MX was a comparative walk in the park.

I've packed some weight on during the last few weeks but my team are keeping eye on a bit of a bloated stomach area. 

Love and hugs to everyone. 🤗

AnGELa x

FlorrieBee
Member

Photo for a smile

Sorry, had not realised last post was sooooo long! Photo hopefully attached, anyone else have any pics, dogs, cats, donkeys, wigs?? 🤗

20210512_101204.jpg

FlorrieBee
Member

Re: Nearly done!

@Mumboo How did your school run go and how did it feel to wear your wig out? Another milestone, yippee! Now you've done it, it hopefully will give you the confidence to wear it out to other places as well? All these things are sent to test us, but it is good to try and just see what works for us. I am hunkering down for the next week or so while immune is low, but will then decide on my first wig outing. Hope to get out for a few dog walks but will stick with my beanies and scarves for those. If I remember I will post a photo of one of our nutty dogs that I took last week, it made me smile and always nice to see a photo I think 😊 

I think you hit the nail on the head about expecting to be thrilled about the last chemo, but it is almost other people's expectations of you that I think got me thinking so much. I was super excited Monday leaving there and when hub picked me up, I did give a little cheer as I got in the car that it was done. But.... I'm back there in three weeks and will return every three weeks for the Herceptin injections for 12 months, surgery middle of June, won't know until after surgery, which will be full mastectomy middle of June and I have opted for delayed reconstruction with DIEP, don't know yet whether I need radiotherapy. They don't think it's in the lymph nodes but won't say for sure until following surgery and they've actually done the biopsies. So much to think about, but I have like you say, kept my head down and doing things one at a time. I have had a few people talk to me though as if the end of chemo is the end of the saga, it does not feel like that to me when I feel there is still a lot to get through yet! I am sure from reading other things it is completely normal to have mixed emotions from time to time, so we mustn't beat ourselves up about it. I do feel blessed to have some very supportive family and friends, it helps so much, but there are plenty of times even with them I sort of feel I'm putting my brave face on, as that is what I'm used to doing!

Best of luck today @Lewy2803, last round so hopefully that will be a good feeling to get today ticked off. From what I've read, if there is no evidence of spread, there is no reason to think that it will reoccur and our treatment plans are individually designed for the absolute best chance of preventing this.

It's so hard not to think of all the 'what ifs' isn't it? When I was first diagnosed, hearing that HER2 grows quickly scared the pants off me! But then they explained there are really good targeted therapies they now use and have great success with.

The way I am looking at it is, for me, they have done the chemo first which blasts the whole body, so if there are any little rogue cells out there, the buggers have been done away with by now. The chemo has hopefully also shrunk the tumours and the mastectomy will completely remove what's left. If radiotherapy is needed, then so be it, let's throw that at it as well!! Then the Herceptin is a targeted therapy designed to prevent any cancer returning so I'm seeing it as, the cancer being removed and gone with chemo, surgery etc., the Herceptin is like an additional insurance policy to prevent any reocccurence. I'm sure the consultant explained the treatment plan something along these lines, but maybe not in my simplistic terms! I try and keep things on a simpler level for my chemo brain 😂 All of that said, I also believe it is completely natural, especially once active treatment has finished for a little fear to kick in from time to time. It would seem time helps with that and if we are ever worrying I think it's important to seek the right support for reassurance ☺

Hope you are all doing okay ladies and you are being kind to yourselves, would be lovely to hear anyone's news 😍 Hugs to all xx

 

Lewy2803
Member

Re: Nearly done!

Yep - last one today. Feeling ok and looking forward to closure when I have my completion mastectomy in June tho I’m not sure we will ever have total closure fr this awful disease. 

Question: if you have a bilateral mastectomy and there has been no evidence of spread, are you free from the worry of secondary breast cancer?

Mumboo
Member

Re: Nearly done!

Hello ladies, 

So you've finished your chemo @FlorrieBee!!  Woohoo!! That's brilliant news! Phase 1 ☑️. So surgery next. Do you have a date?  And what is it you're having done? (sorry if you've said before.. Good old chemo brain!!). I know @Lewy2803 is right behind you with her last one tomorrow. 👍

Hope you're coping ok with all the rotten side effects. It really is tough sometimes, isn't it. Love that you've kept sense of humour too. It's a definite necessity right now! 

I know a few of us have felt a bit low/emotional before final chemo. I think everyone expects you to be thrilled to bits & while it is a huge relief to know that it's the last, you still have to go through yet another load of side effects & then possibly another treatment. While going through chemo, you tend to put your head down & get through one day at a time, marching onwards. Then you stop because you're nearly at the end..and realise what you've been dealing with these past many months. It's no wonder it can be an emotional rollercoaster!

Get that glass of fizz lined up!!  

How's your hair doing @Gelbel?  How exciting that you can see it starting to come back! You mentioned that you're going to be on biphosphonate tablets next. Is that the ibandronate to help strengthen bones? My Onc Dr said i could take these tablets too, alongside Astranazole. I'm not decided whether to or not yet. More decisions! 🤦‍♀️ 

And how has your 2nd cycle gone @tennisgirl? Hope you're doing ok, especially after a busy week last week. 

I'm nearly 3 weeks post last chemo. It's been tough, but i do feel over the last couple of days that i'm turning a corner. I've not been able to get out as much as before, there's been an awful lot of lying on the sofa (when the kids allow!!). I've struggled a bit with breathing whilst climbing stairs etc & a feeling of really heavy legs, like wading through treacle!  Bloods tested & all ok, so just got to gradually get moving & try to balance this with resting! 

I have been getting really watery eyes too, but mentioned to Nurse & was prescribed drops for dry eyes! She said it could be that they're over-compensating for the dryness. Seems to be working!  Not stopped, but a definite improvement! 😁

I'm doing my first school run of the year tomorrow. Got my wig ready. Hoping for rain so i can put my hood up & hide!  I've got some lovely Mum-friends who will be there, but still nervous. Another occasion to put on those Big Girl Pants & just get on with it!  

Hope all you ladies that i haven't mentioned are ok. Still thinking of you all. Xx

 

FlorrieBee
Member

Re: Nearly done!

@Gelbel You are ticking off your PAX sessions, over half way now and next month will soon come round.  Oh the joy to see some hair return, that is great news and must feel like a massive win, lovely news 🎉 I will be very grateful to reach that point, even a little covering all over given time and I may be brave enough to venture it without a beanie or scarf. I have actually just bought a wig I like. Wasn't at all sure about wearing one but the reality of having no or little hair for a long while and then it taking months to grow made me have a rethink. Anyhow think I will practice wearing it at home for the odd hour befriending it a proper outing.

So my news is I had my last chemo yesterday, hooray, chemo done!! 🎉 I've had quite a mix of feelings, could not wait to get it over and done with and definitely left hospital yesterday on a post chemo high! Over the last week or so though, I have really been thinking there seems to be a long road ahead yet and have not been my usual upbeat self.  Strange how our emotions can throw us a curve ball when we think we are in top of things. I have given myself a bit of a shake now and trying to focus on the positives! Phase one is done, surgery next month, but from most of the posts and info I have seen, it would seem that the surgery is often easier than the chemo phase, so that is what I'm hoping for 👍🙏  Will be very pleased to get rid of the next 10 days and the various side effects that chemo loves to batter us with, and knowing that these will be the last 5 days of steroids, injections, anti-sickness etc is cause for celebration for sure! Started on the steroids Sunday and got up yesterday with a very attractive red blotchy, puffy face. Asked hub of he had noticed, to which he replied, yes you look like a puffer fish 🐟 I may have lost my hair and taste, but what a good job I've not lost my sense of humour, they do say that laughter is a great medicine! 😂

@donkeywoman Hope things are continuing well for you. Best of luck with the return to work, hope you plan to ease back in very gently. Btw, how did your prosthetic boob fitting go?

@Lewy2803 Hope there are some more trips to the sea planned, such a tonic. Last chemo for you too this week, yippee, will be so good to get it done! You are absolutely right, the end of chemo probably means the start of a different phase for most of us and it would be lovely to continue reading everyone's updates when you all feel like it and have the time and inclination. I don't do very much online but have found this forum a wonderful source of support and inspiration, and of course a place to vent, or let off steam, with a lovely bunch on here that all just get it and understand what it is really like to be going through the various challenges of BC.

@Mumboo Fantastic that you have also finished chemo and all the best for radiotherapy next week, another phase to reach and tick off! I don't know about everyone else, the time can drag by on sleepless nights and days with bad side effects, but on the whole I really do not know where the time has gone since January, it seems to fly by somehow.  now

I'm still looking forward to my first glass of cold fizz which I feel isn't too far away now, get this chemo out of my system and that bottle in the fridge will be opened, even if it is just one glass! 🍸🍹🍻 Little things please little minds and all that 😂

Really hope all of you are okay and getting through, maybe enjoying the odd outing, or get together with the restrictions easing a little. I haven't intentionally left anyone out, only so much my brain can cope with. 🙈 Sending love and big hugs all round 😍 xx

 

 

Gelbel
Member

Re: Nearly done!

Hello everyone

So lovely to read you are all (expect for @tennisgirl ) reaching or have reached the end of your chemo. Let's hope the next steps are less cruel on you all.

I've just done Pax #4 of 9. So I'm saying I'll be done next month. Then rads, Biphosphonate tablets for 3 years and hormone tablets for 10.

Massive update on me... well it is massive for me. Last evening, I took my wig off after being out and about all day and changed into comfies and caught a sight of my bounce.
I'd do cartwheels if I could. 🤸‍♀️🤸‍♂️🤸‍♀️ Since yesterday am I only had a 4"x2" patch of dark fluff appear on my right side halfway between my ear and the top of my head. And if that was not enough, I've a 5 o'clock shadow round patch on the back.

So happy - could even feel the back hair lying on the pillows last night.

And it grew a bit overnight.👊

So light at the end of the tunnel in lots of ways.

I hope everyone is enjoying the weekend and baby steps of coming out of lockdown. 🤗

Love AnGELa x

donkeywoman
Member

Re: Nearly done!

Hello all

@Lewy2803 that's great, that you managed a weekend away - just what the Dr ordered! And you are right, we still all have lots to come, in various ways. 

Thanks @Mumboo - it does feel as though life is starting to come back - albeit in a slightly weird way. I'm not feeling particularly emotional about it, but did cry quite a bit during 'The Dog House' (about rescue dogs)! @tennisgirl hope your chat with your team before next treatment is helpful. I found mine responsive and, even though my bloods were generally ok (ish), they did reduce my dose a bit when I said that some of the side effects were problematic for me. 

Hope everyone is enjoying the weekend, in spite of the weather (though the sun is currently shining here in Derbyshire). xx

Lewy2803
Member

Re: Nearly done!

Good luck this week @tennisgirl - all the BC stuff going on as well as elections! Were the injections the bone marrow ones? I absolutely hate them and only start to feel better once I have finished them each cycle. 

We managed to get away to the sea side this weekend and despite the changeable weather it has been just the R&R we both needed. The end of chemo brings the start of another phase for lots of us, whether that be start of radiotherapy, breast surgery or simply a return to work - they are all major emotional events so we must make sure we keep supporting each other on here. 

loads of love everyone xx

tennisgirl
Member

Re: Nearly done!

Hi there! Good to hear the end is nigh for you.

My second cycle begins Wed and my pre appt is Tue so will discuss the previous side effects and injections then. Had bloods done yesterday. I will try to endure the cool cap like last time.

Have to admit I am getting a but nervous about side effects etc - if they get worse as time goes on, and also when / if hair will come out more quickly - at the moment there are quite a few odd bits in strands.

Big week here as I am standing in the Holyrood elections as a list candidate so it’s going to be busy / nerve wracking!

Mumboo
Member

Re: Nearly done!

Hi ladies, 

It's been a little while since i've written. No reason, just the joys of chemo reducing me to a blob on the sofa, with an eyemask! 😂 

I've had my final chemo just over a week ago, so am beginning to emerge from the initial fug of the first week! Got radiotherapy booked to start 20th May,  along with Anastrozole (for 10 years). Then done. Woohoo! 

Hope you've managed to get your daytrip to the coast @FlorrieBee?  Gorgeous sunshine here today!  So you're right there with @Lewy2803 & just one more to go. 🎉While i think of it, you asked about dose of Docetaxol.. Mine was 180gm. 

My eyes are terrible too. Constantly watery, especially after waking up. Blurry too. Hope clears up soon!! 

Well done on your socialising @Gelbel!  But it really is so tiring isn't it! I haven't managed any big groups yet, still just one on one, but after a few hours of chatting i'm completely pooped! Good to hear you've got plans for visitors @donkeywoman.  I'm looking forward to having people in the house again but it does mean i'll have to keep on top of the cleaning a bit more! 😂

Have you managed to get your injections reduced @tennisgirl?  And an apt for a pre-chemo chat before your next round?  I'd always have a phone call with the consultant 2 days before, with a quick trip to hospital for bloods too. 

Not sure if any of you have done this, but there's a website called Www.littlelifts.org.uk which is specifically aimed at those with breast cancer. It sends you a gorgeous little box of goodies for if you're going through either chemo or radiotherapy. Doesn't cost anything. I've just received mine in the post today & it's lovely!  Herbal teabags, bit of chocolate, body creams, eyemasks...Such a lovely, thoughtful treat. 

Hope anyone i haven't mentioned is doing ok. Lots of love & hugs to you all. 

Xx

FlorrieBee
Member

Re: Nearly done!

Thanks @donkeywoman I hadn't thought of the lack of lashes but that does make sense, it can't help can it and I've always had pretty sensitive eyes to begin with. Uuugh to the oral thrush, such a pain and hope it clears quickly for you but glad to hear things pretty good otherwise 😊 I have a sore mouth again, I don't actually have any ulcers this time but my whole mouth feels sore so being a little picky with what I eat and drink, nothing tastes nice anyway so hoping it won't last long.

Sunny morning here, or at least I assume it is as I can see some brightness peaking round the blind, I'm still in bed! I'm so slow in the mornings at the moment! 🐢🐌

Hope today is a kind one to all of you lovely ladies 😍 xx

donkeywoman
Member

Re: Nearly done!

Hello everyone

@FlorrieBee before I forget (chemo brain hasn't passed yet, guess it will be replaced by menopause brain!) - my eyes are much more blurry too. I'm just waiting to have my second covid jab and then I'm going back to the optician. Mine water a lot too - presumably due to lack of eyelashes and eyebrows... but they also feel gritty and it's definitely harder to focus. It is really good to have finished chemo - not long for you now too. I have started putting in dates to meet up with people and even have folk to stay (not til June of course). You're right, it does feel a bit weird to be planning 'normal' stuff. I'm going back to work in a couple of weeks, so I'm thinking that will make me feel that I'm on the way back to my life a bit... Glad your last round wasn't as bad, although it still sounds hard, with pain and nausea. I've not noticed anything since the Herceptin jab on Monday. I do have oral thrush back again - my GP says it will be because my gut flora is so diminished by chemo. I've got Fluconazole for a week and then he suggests I get some of those little Yakult pots. I did notice I had a bad taste still, but didn't check my tongue. So I probably didn't catch it very quickly this time. But it's small fry in comparison! 

Hope everyone is coping okay? xx

FlorrieBee
Member

Re: Nearly done!

Ah I bet it feels so good @donkeywoman to have the chemo phase behind you, so pleased for you. 😊 Do keep us posted on progress with just the Herceptin and anything that throws up.  Small steps to normality must feel very positive but i can't help feeling will also be a little strange for us all as we all adjust to more 'new normals'. Have you got any exciting plans ahead? If I'm feeling like it, we're considering a day trip to the coast at the weekend, might get excited about fish and chips by the sea! 😘 

So last round of Docetaxel not as severe thank goodness, hoping no other nasties are going to crop up between now and last chemo in a couple of weeks! Bad pain over the weekend that has eased off now, just tired and keeping on top of nausea.  Question for you all, have any of you had problems with your eyes? I'm about 12 months overdue for an eye test. I only wear glasses for reading and computer work but I seem to be continually having to adjust my eyes as they are blurry or watery. I'm thinking maybe it should now be safe to go and get my eye test and some new glasses, has anyone else been?

How's everyone doing? Do hope everyone is getting through ok, what ever stage you are all at, anyone due to have treatment this week? Erin, how are you doing and have you had your first Docetaxel now?  Belinda, mumboo, pesto, how are you doing now, everyone else?  I know lewy and I are both approaching last chemo in couple of weeks, then surgery in coming weeks and months, anyone else? Still good to hear how everyone else is getting through when you all feel up to it, trials, tribulations, any tips. Wet day here today so a good excuse for a lazy day and hope the garden will benefit as it is really dry so it should get a good water! Take it easy everyone ☺ xx

donkeywoman
Member

Re: Nearly done!

Yes, I had a face to face or a phone call the day before chemo, to check how my blood results were and to talk about any issues. This is when they prescribe the chemo and take home meds. Do you have an appointment? If not, you can always give the consultant's secretary a call to check x

tennisgirl
Member

Re: Nearly done!

Hi

My next chemo is a week on Wed so hoping I will have a pre assessment to discuss how the last one went etc - is this usual?

 

 

donkeywoman
Member

Re: Nearly done!

Evening all, you are right @Lewy2803 , it has gone quiet on here. I must admit that I've been on the forum less the last couple of weeks. I think that life has just become a little busier as lockdown eases and I can get out and about a little more. Friday was the first day that it really felt as though I had finished chemo, as I would have been going that day for next treatment. It was so good not to go! I'm at the hospital tomorrow for the Herceptin (Tratsuzomab) injection and back on Tuesday for my prosthetic boob fitting... It feels a lot easier than before and I'm hoping that Herceptin will allow me to carry on with my life okay. @Lewy2803 that's great, one more to go - hope this one isn't too bad and you can soon start to get on, though I know you have more surgery to come. @FlorrieBee hope that this round is kinder to you and, if not, that you have plenty of meds to help. 

How is everyone else? @tennisgirl - any luck with getting your injections changed? and @Erin 35 hope things are going as well as possible.

All the best to everyone xx

FlorrieBee
Member

Re: Nearly done!

@Lewy2803 round 5 done is a good feeling I bet!? Very pleased your pics line behaved, thank goodness!  One more round, we can do this! 

I'm hoping it is quiet here as everyone maybe enjoying the weather, maybe some of you have plans now as restrictions have eased a little. It supposed to be nice over the next few days, hopefully that will give everyone a little lift. 🌞

Good luck today for treatment and I hope those who have had treatment in the last few days are doing ok. I had my second Docetaxel Monday and have actually had an ok few days, very tired.  It was Friday night that the bone and back pain steamrollered me last time, really hoping that I don't get a repeat! I have got the painkillers at the ready though and will just take to my bed if I need to, think a lazy few days for me.

How is everyone doing? Take care of yourselves and hope the weekend is a decent one all round, sending big hugs 😊 xx

Lewy2803
Member

Nearly done!

Wow chat on here is really tailoring off, I assume as we are finishing our treatment. It would be good to keep supporting each other during the next phases for everyone. 


I'm just home from #5 so one more to go. Such a good feeling! Thankfully my PICC line held up.  How is everyone doing? 

Mumboo and Florreebee had treatment this week and know Belinda is tomorrow. donkey woman is now onto Herceptin only ?

tennis girl how are your feeling this week? Are the injections you speak of the filgrastim? I hate them!

How’s everyone else? Erin, Gelbel, Pesto and anyone else I’ve forgotten. Sorry am typing on my phone so can’t look back to check names! Hope you’re are all ok!

tennisgirl
Member

Re: G-CSF injections

Thanks! If they can do it after in one shot that would be far better. I am a nightmare lol x

Erin 35
Member

Re: G-CSF injections

Hi @tennisgirl  I had a lot of back pain on the 7 day injections and mine was reduced to a single injection 48hrs after chemo. It’s definitely a lot easier to bare! Might be worth a mention to your team! Xx

aqua76
Member

Re: G-CSF injections

Jumping in from November starters here

im not sure why there are different ones, and if it depends on ur chemo type but my GCSF injection was only a single one that I took 24 hours after my chemo 

I would definitely ask your oncologist if you are suffering with it afterwards. 
I also remember reading Liz O’Riordans cancer blog and she had similar issues with the injection. Can’t remember how she resolved but she definitely got something changed and it helped her

x

tennisgirl
Member

G-CSF injections

Hi

I am 6 injections in doing the G-CSF? Injections following 1st chemo - husband has been doing them for me as I am really needle phobic. Until now it has not been pleasant and a bit stingy but bearable. We have been alternating injection sites.

Tonight though it was painful and stingy straight away. Hubby said I was tense but I didn’t think that was it. I am freaking out now because of it. Does anyone know why this has to be given daily for 7 days and if I can ask the consultant to just have one jag after chemo for it? This is my worst nightmare 😔

Gelbel
Member

Re: January 2021 Chemo Starters

Sunday socialising was lovely, if tiring. I threw the girls out after 4 hours. I can't believe how quickly the time went. I was beginning to flag. Bkess them, they cleared all their rubbish, packed the chairs up etc.to save me a job. A colleague said today that she saw pals over the weekend after shielding for the best part of a year and was absolutely cream crackered too - so it might not have been wholey chemo tiredness. I slept 11 hours solid. 🦥

I did nothing yesterday as I was a teeny tiny bit whoozy. Mmm, it makes me wonder if my body thought: "Pah, you were well enough to work you shirker" and decided to pay me back as I feel really quite whoozy today. I had a telephone check-up and they're going to check me over on Friday as I've very mild neuropathy. My tips of my fingers feel like I've trimmed very long nails - though I've not cut them. Hubby offers me his shirt buttons to make sure I'm dexterous. 

Question - not to be read if you're eating! If you get bunged from chemo, do you find you feel more chemo fog/brained/whoozy? I ask as I have been (or not been - until early pm) this cycle and am not feeling good today. Though I picked up a bit afterwards. I could make a case for this looking back at my notes - especially  EC #2 when I was very whoozy from day 3 and didn't go properly for a good few days after the actual chemo. Nurse said could be likely - toxicity not worked its way out etc.

Be interesting to know. I'll keep on top of that in future.

If I'm feeling up for it tomorrow, a few of us are meeting for our tea in a beer garden straight after work. Mind you, if it goes as chilly as it is tonight I will not be going. Gosh it's dropped.

I hope everyone is feeling as good as possible. 🤗

Please excuse any typos - awful time thinking how to type what I want to say!

Love AnGELa x

FlorrieBee
Member

Re: January 2021 Chemo Starters

@Glad you had a good weekend @Lewy2803 I'm really thinking about booking something before surgery in June.  Bet it felt good to be away and have a little normality, but hope they sort your picc line tomorrow.  Thanks for advising your dose on the Docetaxel, think mine was about 164, but I didn't know if this was normal, or whether the Onco had lowered it as they reduced my FEC by 25% due to side affects.

Hope everyone gets a decent week ahead, take care and hugs to all. xx

Lewy2803
Member

Re: January 2021 Chemo Starters

Hi @Erin 35  i am so very sorry for your loss, such a shock at a time when you and your dad are at your lowest. Please take care of yourself. Biggest hug to you xxxx

ive felt well this week ahead of #5 on Thursday and hubby and I even managed a weekend away this weekend. It was so lovely and the sun was out. But boy am I tired now. Just as we arrived at my holiday home my PICC Line arm felt quite heavy and on investigation, I have a tender lump under the skin a couple of cm after the insertion. It’s remained tender over the weekend but hasn’t got bigger. I have a flush and bloods tomorrow so will ask the nurse but has anyone else had this? 

re docetaxil mine has ranged from first dose of 164 and the last couple have been 132. The onco adjusts mine each month dependent on how the side effects have been. For me it has mainly been joint aches (incl lower back like period pain) and tiredness. I don’t often feel too nauseous luckily. 
Good luck everyone for the week ahead. Loads of love xxx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Oh @Erin 35 what a terribly sad and difficult time for you, I am so sorry to hear of your loss.  Sending you a big virtual hug.  There are no words but I hope you have some close family and friends to support and help you through these awful times, and also to support you with your Dad.  I know it's tricky when you have so much going on, but try and be kind to yourself too, have plenty of downtime and take any help offered.

Re Docetaxel, I am on chemo #5 tomorrow, it is the second Docetaxel for me.  As everyone says, we all react differently and some have minimal side affects.  For me, I was not too bad until day 5 when the steroids and injections finished, I then had chronic back ache, sore hips, pelvis and legs.  The pain was pretty bad and although I was taking cocodamol, it did not keep on top of it.  Lasted 5-6 days (I sort of hibernated for that time) and then eased off.  I didn't get to speak to the Oncologist on Friday, it was a nurse practitioner instead, she didn't seem too worried about it and really only suggested extra painkillers.  As I take cocodamol, I am also going to try Ibuprofen in between these if I need them and hope that keeps on top of it.  You may not get any of this, but maybe stock up on painkillers just in case.  I also take senna and laxido as at least 3 of the meds I take cause constipation.  Good luck for this week, will be thinking of you.

@donkeywoman A birthday to celebrate and some socialising equals a little normality, what a treat! 😊 Hopefully things continue along that theme for you.  It will definitely be interesting to see how you get on with the Herceptin alone, I am sure for those of us that will get to that point in the coming weeks and months, everyone is hoping the side affects are minimal compared to the chemo, fingers crossed for you.

@Gelbel And some socialising for you too, must feel so good.  Hope you had a lovely time.  We had my youngest's 18th last week.  It was a very quiet affair, both of the Nan's came over and we had lunch and birthday cake in the garden, so it did feel like a little celebration.  Hoping he can celebrate properly with friends during the summer.

Random question for you all... anyone have any idea of what the normal/average dose is for Docetaxel every three weeks?

How's everyone else doing?  Hope those that have had treatment are doing okay and resting up, good luck to those having treatment this week, look after yourselves.  xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Hello everyone, 

@Erin 35 I am so sorry to hear about your Mum - what an awful loss and also unexpected. Nothing we can say on here will really help, but just remember that we will be thinking of you. My mum also died unexpectedly (many years ago) and I remember that it took some getting over. It sounds as though yours was also young, as she was working with you. It sounds as though you had a wonderful relationship, which, though lovely, will make the loss even harder to take, I would think. Take as good care of yourself as you can. In terms of Docetaxel, as @Mumboo says, it is very different for different people. I had no problems with the infusions, and probably my worst side effect was fatigue. I did have issues with constipation and was too slow to realise. @Mumboo seems to have got more organised than me, so good tips there. I felt better once i stopped pushing myself in the first week. I did lots of lie ins, watching easy tv and napping. There seems to be a real 'aura' around Docetaxel and, although it is hard on your body, it doesn't have to be too awful... We are all so different. But your team will want you to do well, so they will tweak things as needed. All the best.

I've been a bit quiet on here the last few days - I have been feeling well and it's been my birthday which has been lovely, I've seen a few folk and been very spoilt with gifts, flowers etc. Wow, I find socialising exhausting! The unit of blood definitely helped, though I still have a lump on my hand, so I think the infusion may have finished off the veins in my left hand. I'm lucky that they made it through chemo...  Hope you have a lovely time with your pals, @Gelbel  - it's so much easier having people in the garden than meeting somewhere! 

So this week would be my chemo week, so it will be quite weird when Friday comes, I think. I'm still having a blood test on Wedensday and a phone appointment on Friday. Then first lone herceptin jab on Monday, when I guess I will find out if it has its own side effects for me.

@tennisgirl - sounds as though chemo is hitting home, maybe not too surprising, but still hard. Hope you can be gentle with yourself and rest well. Sorry, no advice re hair as I didn't cold cap. But mine is starting to grow back - I have a little furry covering...

Hope everyone is managing as well as possible and being able to enjoy the light and sun, even if it's from the sofa.

All the best xx

Mumboo
Member

Re: January 2021 Chemo Starters

@Erin 35 I am so very sorry for your heartbreaking loss. There are no words. 💖 Sending you & your family much love & strength. 

I'm due my 3rd & last Docetaxol this week. As with everything on this journey, everyone's experience is different but i can give you advice based on mine.

I had absolutely no problems with the infusion. Nurse keeps a close eye on you at your first one, just in case of a reaction. Infusion only took about an hour,  made longer because i'm still having cold cap though. 

I found that it really bunged me up & made me extremely uncomfortable when trying to go to the loo. So the 2nd round i really focussed on the constipation side of things & it helped massively. I took Senekot for 3 nights starting on the day of chemo. I also took dulcosate (prescribed by Onc Dr) for several days too. My Onc explained that one of them softens the stool & the other makes it want to come out!  Sorry if too much info!  Absolutely keep up the fluids. Drink at least 2L a day, every day. 

I got body aches started on Day 4, so immediately started to take cocodamol regularly. (The first round i left it too long & had to take codeine, which then made my constipation worse!) This lasted for several days, but the trick is to keep on top of it if you can, with the tablets...keeping an eye on your bowels, just in case you need another Senekot/dulcosate. This all worked so much better. 

Pineapple juice was lovely & sour sweets were also a nice treat. Anything that cuts through the nasty taste in mouth, if you do get that. 

Keep on top of oral hygiene as much as you can too.

Basically, as always,  if you feel any side effects at all, speak to your Onc team straight away so that you can get on top of them. I put up with stuff & that just made it worse.

You can do this. 💪 Sending you much love & strength. Be thinking of you on Tuesday. 😘

Xx

 

Shi
Community Champion
Community Champion

Re: January 2021 Chemo Starters

❤️Erin, so sorry to hear of the loss of your mum ❤️ the shock of sudden passing can feel like you are in a plastic bubble and everything else is just carrying on around you ❤️ sending much ❤️ to you and family. Docetaxol can make your bum a bit loose so Imodium on standby and upping carbs worked for lots of us, Epsom salt baths helped too ❤️ docetaxol saw off any remaining brows and lashes and too. When you are having infusion if you suddenly feel hot and you chest starts to feel tight when you breath, shout the nurses,  they will stop infusion and sort it out, just giving you heads up on this in case it happens so you know what to do. It’s happened to lots of us on docetaxol and some people have even had the person next to them flake out on it, I just wanted you to know because if you don’t it can be 😳😳 but your team sorts it 👭 again sending much ❤️💕💕Shi xx

Gelbel
Member

Re: January 2021 Chemo Starters

@Erin 35 I have no words. What an absolutely horrendously upsetting event to cap the BC and family situations you are in.

Many, many condolences to you and your family.

Sending you love and hugs. 🤗

Angela x

Erin 35
Member

Re: January 2021 Chemo Starters

Hi ladies. I hope you’re all feeling well and treatment is being kind to you! @Belinda_F sorry I didn’t reply last week. You are so kind always thinking of others! 

I have to apologise again for being M.I.A but my chemo journey has been on hold for a while. My Mum passed away unexpectedly from a heart attack on 31st March and I’m completely broken. She was my best friend - I’m a teacher and she was my Teaching Assistant, so we spent every day together before the pandemic. I miss her so much! My Dad is also battling cancer so I’ve been caring for him the last few weeks. Honestly, this year has been so horrific. 
I should be on cycle 5 next week but I’ll be having round 4, my first Docetaxel, on Tuesday. How have you ladies found it? Any advice? 
Sending love to you all!

Erin Xx

tennisgirl
Member

Re: January 2021 Chemo Starters

Hi

I think I crashed and burned yesterday and today - I think it actually dawned on me chemo has started. I have no energy, and paranoid about everything which I think could be something. Also it hit me that whilst I was ‘ok’ with the idea of hair loss etc - i am really not. The nurse said only wash my hair every 5 days - It is day 3 and absolutely horrendous - you could fry chips on my hair. Terrified to use anything on it.

I know it will get better but this past 24 hrs has been tough. Any hair cleaning tips that won’t help it to fall out would be appreciated - I cold capped the first session.

Gelbel
Member

Re: January 2021 Chemo Starters

Hello everyone

I hope you are all feeling as well as possible after your recent cycles and enjoying the wonderful weather. @tennisgirl how are you managing?

I'm 👌 today after Pax #2. Same 167mg dise @Belinda_F 

Woke up at 1am, saw 5am but then it was 7am. No feeling whatsoever in my tum so I've not taken the anti-nausea tablets. I will take an indigestion tablet later as I had awful heartburn in the night. Don't even feel whoozy. I did have a good chemo brain incident - tried to push the toast in the marmalade jar. And sucked the spoon used to stir the coffee thinking I was drinking it! 🤦

All my May appointments are in the afternoon. Didn't like that yesterday - felt like a condemned man waiting for the final knock on the door. My pulse and BP were off the scale. Made my veins easy to get to though! Will see if I can change but it does mean me and hubby can go out for lunch beforehand. Messes up the day before bloods too as the phone check-ups are late pm. If I can't change the appointments I'll ask if she can book the bloods a week in advance.

I've set up the garden for a socially distanced visit from the girls tomorrow. No way could I last a few hours sitting in the park without a wee. 🤭 Least here its comfy chairs and I have layers to hand if it gets chilly  Everything sorted for keeping the downstairs loo as clean/germ free as possible if anyone needs to visit. For once I'm not going OTT with food - they can have a bag of Hula Hoops each and an individual wrapped madeline - found a bag hiding that needs using PDQ. 

Rather looking forward to it.

Here's wishing you all lovely things to look forward to. 🤗

Love AnGELa x

FlorrieBee
Member

Re: January 2021 Chemo Starters

Great news on the scan @Belinda_F and hope you have been feeling better today? I have been tired but a decent few days otherwise and think I'm all set for no.5 in Monday, bloods this morning and call with Oncologist tomorrow. Not sure where we will go and of May, early June but even if it is just a few days out it will be special! A trip to the coast is a definite one, longing for some sea air and fish and chips! 😜 Our dogs are due to have haircuts tomorrow (aren't they lucky having hair to cut!😂) so think I am going to go with hub so we can grab a take out coffee, so that's an outing to look forward to for now! Just thinking about the hair thing, compared to when I had my long hair i am now super quick in the shower and actually enjoy the shower on my scalp so I guess that is a positive 😊

How's everyone else doing? Pleased to hear round1 went ok for tennisgirl, hope it is still going ok for you.  Hope everyone is managing to enjoy a little sun 🌞 Hugs all round xx

Gelbel
Member

Re: January 2021 Chemo Starters

Hi @tennisgirl Lots of fluids helps to keep the vein open.

I'm off to get my bloods done at lunchtime - nurse booked them for me so I don't have to hang around tomorrow. Do a bit of click and collecting on the way there/home.

I hope everyone is having a good a day as possible. It's still cold despite blazing sun - washing's drying though. 

Love AnGELa x

tennisgirl
Member

Re: January 2021 Chemo Starters

Thank you so much. No mention of a Picc line as they thought veins were ok but will keep it in mind. Anything we can do to keep our veins in good condition?

 

 

Lewy2803
Member

Re: January 2021 Chemo Starters

So pleased @tennisgirl @that you didn’t find it too bad. Have your asked about a PICC line? Don’t forget to keep a detailed diary of all your side effects so you can plan better for cycle 2. 
I got my period too just after my first round but haven’t had one since. 
we are all here for you xx

Gelbel
Member

Re: January 2021 Chemo Starters

Way to go @tennisgirl. Lots of 🤞 for continued minimal side effects. Glad you have everything to hand to help out. Don't forget to get plenty of fluids down you.

Never TMI. Aren't our bodies amazing things?!

Hope you have a good night's sleep. 🤗

Love AnGELa x

tennisgirl
Member

Re: January 2021 Chemo Starters

Hi all, thanks for your support so far.

So finally had my first chemo session and it was not half as bad as expected, nurses were brilliant, lunch was lovely and managed to endure the cold cap.

Got home about 3 hrs and starting to feel a little bit woozy and light headed but have my anti nausea pills, bands, and ginger sweets to take. Maybe too much info but my period decided to arrive today with mega cramp and bit of a headache so that added to the fun.

Genuinely getting the cannula in and out was fine. I am really squeamish so they covered it with gauze cos there was like 3 tubes lol so that helped me.

So will see how it goes there on in. 5 more to go! Take care x

Belinda_F
Member

Re: January 2021 Chemo Starters

hello guys!!! oh god @Lewy2803 what a nuisance!!!! I have terrible problems getting 'bloods back' and also have had the loosener drugs... I do hope it's OK next time! mine was...they're only good when they work these things aren't they! 

@Gelbel your massage, 😂 bet they had a little giggle too didn't they? chemo brain is so a thing!!! (I want a massage....) sorry you had post steroid slump, but very glad it wasn't as bad as before... I too have shocking flushing on my face! first few, I flushed couple of days then it went but last time I came up in rash/spots on my face... lots and lots. Not sore or anything but not fab being spotty at my age lol. They've now given me some anti histamines and they seem to be helping. 

@FlorrieBee how are you doing? I do hope you're in that time during treatments when you're feeling 👌 that's funny you should mention that gap between treatment and op, I too have that end of May and into June. I CANNOT WAIT!!!!! will get out of London for sure... sea, hills, countryside... you? what will you do? just to have a break from the hospital visits will be bliss won't it! 

and @tennisgirl is your first treatment this week, what day? be so thinking of you... it's the start of the finish of treatment ~we're here for you x. 

talking of which.... our super lovely @donkeywoman has now had last chemo and transfusion. Monday was it? beyond super congrats DW!!!! I'm so over the moon delighted you've finished. now, and can look to the future bc and treatment free!!!! woo-hoo.!!!! how are you doing and feeling? what a feeling it must be... but odd too perhaps... after such a long haul, a difficult haul... send news when you can Xx 

I'm exhausted now... have felt super tired last couple of days...my bloods are down or the effects of taxol are cumulative like EC... just so exhausted...oh! I do have news, silly me, had a scan yesterday and tumor still shrinking, now only 3mm...good news... 

sending big big hugs guys, have good sleeps, and peaceful dreams. Xx 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Fingers crossed @Lewy2803 that everything remains fine with your picc line, especially when there's not long to go.  Sounds like you had a bit of a day yesterday! I'm hoping my viens are going to hold up too, as I've had a cannula so far, so fingers crossed 🤞 

Hope everyone else is doing okay, maybe enjoying a little sunshine? 🌞 Xx

Gelbel
Member

Re: January 2021 Chemo Starters

Must be the day for going out and about @Lewy2803 I hope your picc behaves itself.

I felt a bit rough with steroid withdraw yesterday but no where near as bad as for EC - not even when I took half measures at home. Perfectly do-able once a week. Did ask the nurse who called about a little reduction but she said wait to see how I am after Pax cycle 2 as I was red/flushed/slightly rashy over the weekend. My mouth off taste has changed - 
sea-water mixed with gone off milk. Yuk. Need to dig out the jelly bean sours!

Want a giggle?

Had some physio this am as got cording in my operated arm. It was amazing to see an new face - 2 as there was a student. What has my life become?! 
It was wonderful - even better than a foot rub. At one stage I was like a cat having a chin tickle - purring and nearly dribbling. Wow - someone massaging me. They and a couple of exercises every hour should sort it out in a few days. Not helped with a few classic cases of chemo brain:
Me: "Bra off too?"
 
Physio: "Yes please"
 
Me 20 seconds later: "Ready" with bra still on
 
Physio: "Lie on your back"
 
Me: "Is that looking at the ceiling?"

😳🤣

Good luck to everyone have their next cycle in the next few days. 🤗

Love AnGELA x