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February 2021 Chemo Starters

hopeful1974
Member

Re: February 2021 Chemo Starters

Kaz11, I stupidly put hot soup in my Nutribullet. I definitely don’t recommend that! I also overfilled it. It literally went all over the kitchen and it took us days to remove it. I also thought I had burned myself, but it turned out to be ok once I had out some cling film around those areas (a top tip if you burn yourself: cover in cling film and leave it on for a few hours - makes the burn not hurt at all). 

Re the hot topic of sleep, I have been taking Zopiclone sleeping tablets as I too have been too alert to sleep lately without them. My GP has highlighted that they can be a foe in the long term as you can get dependant on them, but I feel that at the moment I need to do whatever I can to feel normal and I will deal with getting back to normal sleep at some point later! My surgeon is very keen for me to be rested for my op, so I am continuing with them for now.

 

My appetite has returned with a vengeance, which is very good news for me and I am enjoying large portions of less bland foods. 

Enjoy the sunshine if you have it. Siân xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Thanks for your quick reply and I appreciate the tips re browser etc.  The GP told me before not to hesitate to call the surgery if I needed anything and now I can’t even get a telephone appointment any time soon!
Will speak to oncologist re work.  As far as I am aware 18 weeks is a fairly standard timeline for BC chemo.  That in itself is nearly 5 months never mind the time taken for surgery and radiotherapy added on top so 6 months is used up pdq.  It is policy that we only get paid for 6 months and I know this was an issue with another colleague who went through treatment however to comment on my being back at work after that time to me just shows a complete lack of understanding as you say.  I had holidays to use up from last year so actually used up annual leave pre and post op so that I wasn’t eating into my sick pay too early.  Ridiculous that I even needed to consider that.

Will keep you posted.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 that's a poor show from your GP. TBH I find they don't have a clue. The practice nurse who referred me calls for a check-in every 4 weeks which is lovely. On the other hand one of the GPs told me to change my chemo day to fit in with his vaccine appointments. 🤬

Ask your Onc team for a letter or email for work. For speed, it might be worth trying a different browser for the econnect or make sure pop-ups are allowed or if you are using a mobile, change to the desktop version in the settings - the 3 vertical dots on Android.

HR need lessons in being human at times. My boss has said my 'case handler' is hopeless and hasn't the slightest concept of what chemo involves - hasn't even bothered to read the guidance provided to people managers by the company. My boss has said that the handlers boss is amazing - seems she's had BC herself.

I hope it all gets sorted easily.

Love AnGELa x 

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon everyone hope you are all having a nice Sunday so far.

@Gelbel lucky you with the sleep sounds bliss.  Think I had a spell of 4 hours last night between 2am and 6am which is the longest I have had.  My mind seems to start racing as soon as I lie down and so find it so hard to drift off.

Know what you mean @Teagold re the loss of confidence etc.  I feel that too and without a routine except on hospital days I find I am more anxious than before which doesn’t help sleep either.  Bizarrely the day I seem to be most chilled is when I go to the hospital for chemo.

On the work front my line manager called last week to say they are ok with me going back one day a week provided I get it signed off by the doc as she will need to alter my sick line. Called GP’s surgery on Friday to arrange a phone appointment to be told there are none until May and to use econsult via the practice website.  Tried and it was experiencing technical issues each time I tried 😡.  Will need to try again tomorrow but a hassle I don’t need.

Then had an email from HR at work telling me when my pay will stop in July (I only get paid for 6 months).  I know I take things to heart and am too sensitive but the message said not trying to put pressure on me but hope I will be back working by then.  My treatment is still going to go on well into June which I pointed out.  I have asked for clarification on a few points like a phased return and if that needs to start before my sick leave is up or not.  It is now a stress which I don’t need.  Sorry for the rant.  If I need to get the oncologist involved in writing a letter to say I will need to gently ease myself back in then I will.  Can’t see me being ready to be back full time by mid July somehow.  They probably don’t mean that but bottom line is I won’t get paid so I suppose at least I know how the land lies now.

@hopeful1974 am so glad the surgeon has said about doing your other procedure at the same time as your op.  Hurrah for joined up thinking!  Now going to be very careful with my nutribullet btw.

Weather wise not so nice here today so heating is back on again!

love and hugs to you all 

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

An exploding Nutribullet? Needed a photo of that @hopeful1974 

Hurrah for a sensible thought from a surgeon. 👏 

Honestly, Pax is so much easier to manage and, for me, hardly any side effects (so far). I've only had 2 and I'm finding the weekly regime is easier as I'm not counting bad, ok and good weeks and time's flying. I slept like a baby last night, sparko from 22:30 til just before 5am followed by a lovely snooze until 7. Apparently hubby ooohhed and aaahhed loudly every time he moved in the night as his arm hurts from his second vaccine jab. Didn't hear one. No doubt the day will be full of them!

Happy Sunday everyone. I hope it's just the day you want.

Love AnGELa x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Teagold, 

I think your reaction to change sounds perfectly understandable. I have found changes more difficult to cope with too. During my third cycle of EC, I was phoned up by a different hospital to tell me me that I have a ‘suspicious vacsculrity’ on my womb lining and they want to do a biopsy. That was one thing too many for me at a time when I was really struggling with weird side effects and was feeling very drowsy. Anyway, it is all sorted now thanks to my lovely surgeon who has arranged for that biopsy to be done during my mastectomy operation so that I won’t have to go in for a separate procedure. I am very impressed by his organisational skills! Whenever I have had a worry, my breast care specialist nurse has been the best one to talk to and usually sorts everything out really quickly for me. I lost my confidence in the kitchen as I had a few bad experiences with nausea and also an exploding Nutribullet! I have taken a while to get back to cooking, but I have managed a few meals this week and my confidence is coming back there. Taking baby steps with no pressure has helped.

Angela, I am impressed by your ability to pop out for lunch and see friends. I really hope I can do the same while on Pax. 

We had my sister and husband over yesterday as well as my parents. It is so good to be able to see people outdoors and feels like a little bit of normal life has returned. 

As you can tell, the more my life feels like the old normal, the better I seem to feel, although I do like the more relaxed pace of the day now with a film or two and some needlepoint! 

I hope you all have a good day. The weather is good here today so I will go for a walk and sit outside in the shade a bit I think. 

Sending love to you all xxx

Teagold
Member

Re: February 2021 Chemo Starters

Hi everyone

@CrazyCatLady so sorry to hear you’ve had such a rough time of it. How are you feeling now? Sounds v sensible to take the break from work and good that they’re being so supportive, I think you’ve done brilliantly to work up to now though I know what you mean about the distraction. I hope the next cycle is kinder and no more exorcist moments!

@hopeful1974 good news that you’ve got a date for the op and not long to wait now 🤗 

I’m feeling a bit anxious as I’ve got an appointment with my oncologist tomorrow to find out how things are going after some scans last week, then also seeing my surgeon on Friday to talk about what/when etc. Feels like quite a big week ahead and this may sound daft but I’ve got so used to my weekly routine now that any change in hospital days/appointments throws me, which is so different from how I used to be before all this when I was never fazed by a change of plan. I think I’ve lost a lot of confidence. 

It’s fab that so many of you are on the downward slope now, time really has ticked along hasn’t it. Assuming my onc doesn’t change the treatment plan I reach the halfway point next week - so I’ve a few weeks longer to finish and hope you’ll all keep posting so that I’m not Norma no-mates on the feb board all by myself!! 

Thank god for the sunnier weather - though still bloody cold. Has been nice to sit in garden but amusingly managed to burn my bald patch yesterday - oops. 

Have a nice Sunday everyone.

tg xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel @LottieLaing 

I got prescribed Omeprazole after first EC as heartburn was bad and took it after EC2 & 3.  Not taken it so far on the Paclitaxel but am careful what I am eating.  Seem to get heartburn if I eat too many fruity sweets so having to lower my intake of Percy Pigs unfortunately! 🤣

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @LottieLaing 

I was prescribed Lansoprazole for EC3 onwards - killed the indigestion I got with EC2. Hope it kills the heartburn I've got with Pax - especially as I've braved a lamb kebab and Greek salad tonight. Yes, salad! I might've managed my 5-a-day today for the first time since Easter day.

LottieLaing
Member

Re: February 2021 Chemo Starters

Angela do you have omeprazole to take for indigestion? I needed it after first EC x

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone

I hope you are all feeling as well as possible and enjoying the wonderful weather. Sam, are you back to your 'normal' self?

I'm 👌 today. 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. Actually I'll  have one now as I've not eaten for hours. 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! 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

 

hopeful1974
Member

Re: February 2021 Chemo Starters

I have a portacath, which makes blood tests and infusions easier. They started running out of good veins for me in my arm after a while so it might be worth thinking about a PICC line. 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi there K,

 

My tip would be to make sure you take all the anti-sickness meds they give you and to not be afraid to change any of them or ask for stronger ones if you need to. I changed my anti-nausea plan after the first cycle and it made such a difference. For me, the Dexamethozone was the most effective at keeping the nausea at bay, along with the Aprepitant, which I had for the first three days. I developed diarrhoea after the nausea had eased, and loperamide helped with that. If in doubt, just ask your nurses (we have a 24-hour hotline for questions like that). Rest when you need to but I also tried to at least have a little walk around the garden each day even on my hardest days. Know that the side effects will end! 

I hope that helps. Siân Xx

ktruffin
Member

Re: February 2021 Chemo Starters

@Kaz11 Udderly Smooth moisturiser is fab and can even be prescribed by some chemo units as it’s recognised as being v effective on cracked hands / feet. I had awful peeling on Docetaxel and it fixed its in two days

Top tips for tolerating EC as my FEC starts this week. Anyone got a PICC line - only 3 cycles so not sure if it’s worth it 

k

Kaz11
Member

Re: February 2021 Chemo Starters

Morning @hopeful1974 

So glad you now have your date for surgery that is another huge step in the right direction and it’s not too long to wait now.

Also great that your work is being so understanding and have given you the year off which is great.  I don’t have kids so don’t have that added pressure but sounds as though you have your hands full.

Sending hugs

Kaz11 x

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady I hope you are feeling better now after what sounds like quite an ordeal! I am glad that they may lower your doses for next time as I imagine it is important for you to be able to eat and drink. It is their job to manage these side-effects for us after all. My work has given me the whole year off which is just as well as I don’t think I would have had many days when I felt up to working. I have only felt better for the last couple of weeks in terms of being able to concentrate on a book or some needlepoint! I think working would have been one step too far for me. I’m not sure what I will do long-term work-wise, but I definitely don’t want to work the four days a week I was doing, as it was too much even pre my diagnosis combined with looking after our children. So I will see. I don’t have to decide yet anyway.

@Kaz11, glad to hear you have been able to organise your one day a week at work. It sounds like Paclitaxel is much better tolerated in general than the EC was. I think I will ask for the weekly one if given the choice as I like getting into a routine. 

@Gelbel I am glad to hear that you are having an easy time on the Paclitaxel too. All very encouraging! I will have Trastuzumab and Pertuzumab as well, but the nurses say that I should not have much problem with them. 

My surgery is on 26/04. I am pleased that it will be done so soon and I will then have 6-8 weeks to recuperate. Then, 9 to 12 weeks of a taxane (hopefully Paclitaxel) with the immunotherapy (Trastuzumab and Pertuzumab) once every three weeks. After that it will be just the T and P on their own until the end of the year.

 

It seems like a long road ahead, but in terms of the chemo, it is good to know that I only have 9-12 weeks more. 

Sending love and hugs to you all for a good day. 😊 😘 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Sitting in bed reading through today’s posts after being at the hospital today for my second of 9 paclitaxel sessions.

@CrazyCatLadywhat a horrific time you have had you poor thing. Sounds absolutely awful and frightening.  Quite right re the work situation for the last 3 cycles as you must be exhausted.  Sending you massive hugs and hope you feel better soon.  Sounds like you could give some serious thought to packing your job in anyway.  Your health is more important than anything.  I too am suffering from chemo brain at times in that I go to do something and then 2 seconds later have forgotten what it was.  Looked on Facebook earlier and saw some handcream advertised that was produced by nurses so thought I would check the price on amazon.  However by the time I clicked on amazon I’d forgotten what I was going to look up 🙈.

@Gelbel like you I was much better after the first week of Pax as opposed to EC.  Felt slightly tired a couple of days but not so much that I had to lie down so better physically.  Don’t know if it will be the same each week or if the cumulative build up will have a different effect each week.  I noticed today in my cancer book that I got the same dose as last week.  Was relieved that my bloods were ok today and I could still get the treatment as I was worried that covid vaccine number 2 which I had on Tuesday may affect my cells.  Ended up getting the jab a week early as my GP’s surgery had cancellations and spare vaccine which needed to be used. It will be 3 weeks before I am “covered” with both doses.

 I checked with the nurses re what I am allowed to do/not to do when things open up here.  They usually say it’s what I am comfortable with but have said it would be ok to go into a cafe as long as it’s outside.  Hopefully the weather will be warmer by then as temperatures currently in the minus range overnight.

I tolerated the cold cap again today. The nurse told me that my hair is not too bad at the back but of course I can’t see that.  Looks awful at the front/crown and have bald patches above my ears now.  However I know if I stop the cold cap the rest of my hair will fall out and not sure if I’m ready for that further psychological blow at the moment.  Will just decide on the cold cap week by week.  No sign of anything growing back yet for me.  Only washing it once a week as advised by the nurses but it certainly isn’t greasy anymore.  I could have really washed my hair every day in normal times as I had an oily scalp.  By day 2 my hair was always a riot and I needed to use dry shampoo if it wasn’t being washed.  Skin was also oily in T zone but not now.

 I too now have 7 weeks of chemo left (49 days and counting) provided my bloods stay ok.  I know I have radiotherapy to come, portacath removal and bone strengthening drug to come at some point (apparently I need to get a dental check first) but have always viewed the chemo as the worst part.

Spoke to line manager yesterday so work ok with me doing one day a week.  I just need to get it agreed by GP and sick line amended accordingly so that will be tomorrow’s job.

Anyway going to try to get some sleep (always a challenge though piriton seemed to have more of an effect today) as am now gubbed.

Take care everyone and good luck for tomorrow’s Pax @Gelbel 

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady / Sam Lovely to hear from you.

OMG you don't do things by half. Your Exorcist hospital trip sounded horrendous. If it gets people noticing that dosages of stuff need adjusting then hurrah!

That's also good news about work and you don't have to worry given you do have severe reactions. Funnily enough, I got a copy of the letter sent to my GP re my last doctor-led check-up. He mentioned that while on EC "she did struggle significantly with what sounds like chemo fog for several days and this was quite severe for 24 hours."

Loving Pax - if there's such a thing! Apart from being a bit iffy on Monday it's been my EC late week 2 into week 3 feeling.

Your hair! So with you. I raise you 1" of fluff but not all over - say 1 hair for every 3 sq mm! I love it when it dries after a wash (it flutters in any slight breeze) and when I take a wig or a beanie off and it slowly rises up from being flat. 🤣🤣🤣

I got my bloods done this afternoon to save hanging around tomorrow ahead of chemo. Nurse called for another check-up, I missed her call. So she called the house phone and had a natter with hubby.

Hope your Pax went well today @Kaz11 🤞

Love to everyone. 🤗
See you on the other side...

AnGELa x

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello everyone...sorry not been on for a while and you've all been busy keeping the forum updated so had a lot of catching up to do!

Hope you are all doing as well as you can and if on the Pax, hope you're coping OK with the weekly regime. And for those who've had some rough days, hope you are all now feeling much better.  And glad to hear everything sorted now for you @Leftygurl - so good to see you were finally able to go home.

@Gelbel you did make me laugh ref your physio appointment....that is SO me lol 🙂  I keep trying to remember where I got things from in the kitchen and stand there with the coffee jar in my hand looking around at the cupboards before finally remembering where it lives (literally right in front of me)!

I know it seems so long ago now, but Easter was a non-event for me as had 3rd TCHP chemo on 1st April.  And joy of joys, no filgastrim again!!  Plus finally given antiemitics which worked yay!!  Ondansetron and Cyclizine worked well for me and no sickness at all 🙂  However, whilst I didn't get any ikky side effects, it did completely wipe me out.  

From day 2 to day 7 I was unable to stand for more than 30 seconds and could only manage a few short steps from living room to kitchen and spent these days lying prone on the sofa napping on and off all day.  Lightheaded and dizzy with absolutely no energy whatsoever and food and drink not even on my radar (so probably didn't help matters).  I even called the chemo line to see if this is something I should be worried about or if it was just the cumulative effects of chemo.  Said my bloods (which are apparently bloody good - parden the pun) didn't indicate any areas of concern re anemia or low neutrophils, and as my temperature normal, probably nothing to worry about.  But said may want to check with GP to do some obs/bloods to double check.  So then got call from my GP who said couldn't do anything until at least next Tues, so said to call them back after the weekend if still the same.

Anyway, had fun and games on day 8 (last Friday 9th April) as went to have my PICC line dressing/flush done.  However, I was still a bit wobbly and I think the short walk from the entrance doors to the ward - probably no more than 600 yards - finished me off.  Told them when I got there I was woozie and went straight to my seat so they were forewarned.  The nurse had just about finished my dressing when I said I was going to go....so nearly fainted/partially collapsed and then proceeded to do my impersonation of the Exorcist!  Hadn't even been feeling sick beforehand though! 

So my 10 min appointment turned into over an hour and there were suggestions of admitting me.  Fortunately after being seen by a variety of nurses, registrars and an onco consultant, and me producing my good bloods and all other obs being completely normal, they sent me on my way (in a wheelchair) for my husband to drive me home.  He'd been waiting in the car park as he knows it's normally only a 10 min or so appointment...so he was trying to phone me to see what was happening whilst I was in the midst of being changed into a gown (as my top felt the full force of my emissions yuk!)

At least this may mean my dosages will be reduced as the onco said she'd liaise with my consultant to advise of my issues.

So after all that, I also made another decision in that I'm going to get myself signed off from the GP for the remaining 3 cycles - next one being next Thurs 22nd April.  So gives me more time to recuperate after each session and not having the wear myself out with my WFH (ableit it only 3 x 6 hr days).  Even doing this makes me tired so putting myself first for a bit whilst I get to the end of the chemo stage.  My boss has been brilliant about it and said she was impressed I'd even managed any work at all whilst going through chemo.

I'm in the very fortunate position in that my husband is on a good salary and has said to me I can pack up work whenever I want.  And I think I'm nearly at the point when I may want to finally pack it all in....but going to wait and see how I am after all my active treatment has been done.  Like many have said, it does give me something to focus on and and there is only so much housework you can do!  

And finally (sorry for such a long post btw!) but I think my hair may be starting to re-grow!!  Only a few teeny tiny grey tufty strands peeking through but I'll take it!  So far I've still got a smattering of 2mm hairs all over so not been completely bald, but the longer ones now starting to be more noticable 🙂

Anyway, thank you for reading my rambling post and wishing you all well for the coming days and weeks xx  Think we're all nearly on that downward slope to the end of chemo (49 days till my last one now!) xx

Take care all, love

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Ps my chemo brain kicking in now!  Someone told me (can’t remember who) that I could use the eyelash serum on my eyebrows too which I have bern doing.  However as they appear to be thinning too have now bought the Lipocils specifically for eyebrows.

Kaz11

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel @ktruffin 

The eyelash serum is called Lipocils.  I got it on amazon - not cheap but it was recommended by the hospital.  I also use polybalm on my fingernails and toenails.  Again recommended by the hospital and I got on amazon.  Again not cheap but although my nails are quite brittle they are growing.  Have been told that the Pax can have more effect on nails so will need to wait and see how they fare during this.  As you say @ktruffin good to know that things can fall out post treatment like we’ve not been through enough already!  However if it’s doing it’s job I suppose we need to accept that.

@Gelbel hysterical account of being at the physio!  Good old chemo brain.  That has given me such a laugh today.  Thanks for the work info you are a star so appreciate it.

Have had a call from GP’s surgery so just heading for covid jab a week early as they’ve had cancellations.  
Travel ban in Scotland also being lifted early now so we can leave our own council area from Friday for the first time in around 6 months.  Yay!

Kaz11xx

ktruffin
Member

Re: February 2021 Chemo Starters

Very quick question - what is the eyelash serum and who / how did you find out about it? Currently using a really good Bobbi Brown Eyebrow gel which is brilliant but havent started giving my eyelashes any love and like you I am holding onto hair of sorts hidden under hats but dont want my other hair to start to scarper any earlier than it must. Was warned the eyelashed and eyebrows fall out around 2 weeks post treatment to add insult to the many injuries. I suppose we have to remember the chemo is actually doing an amazing job for us even if the process is so rough

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Guest user Found this for you: BC and employment.

Employers are required to make reasonable adjustments to help you continue to work, return to work, have time off for medical appointments or for continued treatment and recovery.

The jelly beans are the sour ones (mine are from Aldi).

My temples, where wig tabs go, are smooth.

Physio 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. There's a novelty. I have quite an amount of cording rear its ugly face in the last 2 weeks. The physio and her student did a wonderful job 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?"

Physio: "Yes please"

Me 20 seconds later: "Ready" with bra still on

Physio: "Lie on your back"

Me: "Is that looking at the ceiling?" 

😳😳😳😳😳

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

That’s really interesting what you say about the letter from the oncologist as I am getting a bit concerned re work long term.  My job involves long/late hours sporadically and travelling to other places in Scotland at times outwith my main place of work. I am thinking that even when my treatment stops I am obviously not going to be 100% and I don’t want to be sent all over the place as I think it will be too much for me but not sure how well it will go down if I say that. I only get paid for 6 months full then it would just be statutory sick pay.  Retirement doesn’t appeal to me yet as I feel I still need to keep busy not to mention building up my pension contributions.  Maybe I should speak to the oncologist about it as I get nearer the end of my treatment and ask her advice.

Like you I still have a pretty rotten taste in my mouth permanently.  Jelly beans - that’s a new one I will add to my shopping list this week!  Have had a bit of indigestion again but not too bad and the bowels seem to be normal-ish. Haven’t had the crushing low of EC so far though been a bit more tired the last couple of days but not so much that I can’t do things.

My flushes and sweats have been awful the last couple of days so one minute roasting and then cooler again though like with you it has been baltic here and minus temperatures during the night so heating is on and off like a yoyo at the moment.

Nice for you to see a new face with the physio.  I have 2 days to go until the big weekly outing to the hospital for Pax number 2!  
Just gave my hair (or what’s left - probably have a cheek to call it hair!) it’s weekly wash.  Still some coming out when I comb it and notice balder patches appearing above my ears.  What a joy it is seeing myself in the mirror these days.  Also think my eyelashes starting to come out despite using the serum. Meanwhile my arms still have a yeti like covering! 🙈.  I suppose it’s not much wonder that we feel rubbish and emotional at times!

Have a good day everyone 

Kaz11 x

 

 

Linda1967
Member

Re: February 2021 Chemo Starters

Hi Lottie. Glad you are finished EC 

I didn’t find nausea bad, but I did take regular tablets just in case. 
on we go to the next step..... nearer to end of treatment. 
take care everyone x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

My ONC consultant did a 'to whom it concern' letter to my boss for my sicknote to cover 'at least' 6 months and might need extending for another 6. It says the side effects will make it difficult do continue my usual duties. I sort of agreed the wording with her as sort of a way me being able to work when I feel able to. Though TBH retirement is looking more attractive... or going part time.

I'm lucky that I get 12-month's full sick pay and 6 month's half.

I felt a bit rough with steroid withdraw yesterday so I didn't work. I was cold too - it was bitter up here. So I ended up semi-prone on the bed (the sun streams in the bedroom all day from 10ish at this time of the year), feet under the duvet watching Spiral from 10:30-15:50. It was lovely - might make that my next 8 Mondays regime!

I was better, though not 100%, when I got up. Went to bed proper at 19:30, didn't see 20:30 then work up at 5am. Feel just about OK today though - except for that sea-water taste you mentioned, mixed with gone off milk. Yuk. Need to dig out the jelly bean sours!

Physio in a bit - be nice to see an new face. What has my life become?!

Hope you and @hopeful1974 are feeling brighter today. 🤗

Love AnGELa x 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

Glad to know it’s not just me who is fed up!  Like you I am trying to be so careful however I am going to ask the nurses for advice again when I go on Thursday. I am the same re nit being sure what I can and cannot do especially when things open up here a bit more in 2 weeks time.  I had been sticking to walking with one friend but as she could only walk certain days I felt I needed to see other people to keep me sane!  Have been walking now with other friends - we both wear masks and try to keep our distance as much as possible.

Hoping to hear on Wednesday from my line manager re the work situation.  I think it would help me to have another focus as you say as long as I feel up to it.  Even if I can’t manage a whole day I could split the hours over a couple of days but will need to see what they say.

 I hope you hear about your op soon.  Whilst I was nervous before my surgery as I’d never had an op before I found it much easier to deal with than the chemo and was back on my feet quite quickly.

Take care and I’ll update on what I’ve been told I can and cannot do after Thursday.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

I have totally been feeling like that - fed up of having to shield and just wanting a sense of normality. It sounds like a bit of work might be a good distraction as long as you feel up to it. I am waiting for surgery at the moment and it has been four weeks since my last chemo. I am feeling a lot better but still not normal and I don’t quite know how careful I have to be either. I had my second jab 9 days ago now, so think that I should be ok but don’t want to take chances. I am seeing quite a lot of different people for walks, which helps a lot.

 

I hope you find your balance. 

Sian xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Big hugs right back at you too and I hope you get rid of the steroid buzz after a rest today.  I keep waiting on something to happen so probably analysing it too much.  Hope your hubby is giving you lots of tlc as you deserve it.

That’s good to know you are still going to the shops but at non busy times.  I actually had a dream last night about going to Morrisons but you had to do a covid test at the door before getting in for shopping (maybe I have seen into the future!).

I didn’t appreciate from a work perspective how we are classed so that’s good to know.  My line manager and senior manager are supportive but they will need to speak to HR.  My GP gave me a sick line up until the end of this month so not sure of the in’s and out’s of that if I want to work the equivalent of one day a week.  I didn’t ask for my sick line for that amount of time initially but she did it anyway as I am on chemo.  Will also take on board re what you have said about a full day being too much maybe so could split it across days and keep a note of the hours.  It would also enable me to claw back some sick days as we only get paid for a finite period of time. However that is not the main driver for doing it.  As I mentioned it’s more to give me another focus.

Just realised I sound a right moaning minnie today so apologies for that.

Fingers crossed that you feel better by the end of today after resting up.  Big hugs 🤗 

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Aw, sorry you feel like that @Kaz11. 🤗 I do go out to essential shops early or late in the day to avoid crowds. I won't go in if it's busy. Hubby had to shield so I was very careful but refused to stay in 100% of the time. And that's the attitude I'm now taking with me! I've had my 1st jab (AZ) and the second one's mid-late May.

Climbing the walls to go swimming now the gyms have reopened. I guess I won't be able to go for a few more months.

I hope you can do some work. Lay on the need to for your mental health to them. Don't forget they have to make reasonable adjustments as we're classed as having a disability. You can argue a few hours work a day (rather than one full day) is an adjustment. I find full days difficult - reduced hours work for me and my boss let's be me as flexible as I need to be.

I didn't have steroids for home, just before the Pax. It's still enough to set me off! Hopefully it'll be short and not too bad.

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

I didn’t get any steroids this time after my first weekly Pax so have had no meds to take since I came home.  Just got the metroclopramide in case of nausea and sachets of stuff to rinse my mouth in case I get ulcers.

Have felt normalish the past few days.  Bit more tired yesterday and anxious.  Just feeling a bit sorry for myself and fed up with it all now.  Want the treatment to be over so badly - I am sure everyone else feels the same.  Also sick of the lockdown and even when things open up here not sure what I will be allowed to do as still going through treatment.  Will need to be guided by the medical team.  I long to have someone in the house just for a chat and a cuppa!

Hoping to hear from work this week as I would like to do one day a week to give me something to focus on other than BC.  There’s only so much housework I can do and am getting so fed up with the monotony of it all.  I am getting out for walks with friends thankfully but am finding the days dragging a bit at the moment.  I suppose the weekly chemo will help as my hospital visit is my big day out - how sad is that!  Even sadder will be the first time I get back to the supermarket- I will be so excited.  Not been near a shop since December!

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

@LottieLaing I never feel nauseous nor ever sick. I take them if I am 'aware of my tummy' which is as far down the 🤢 route as I get. That's why I take so few. Only 31 in 4 rounds of chemo.

How are you today @Kaz11? Deffo on the steroids withdraw whoozy step today. So going to have a lie down lazy day to ride it out.

Hope everyone else feels OK. 🤗

Enjoy your haircuts, large g&ts in beer gardens and battles in Primark if your country is opening up some more today. 👍

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi Sian

Thank you for your reply, that’s good to know. I just had a sore arm for the day after the first vaccine which was the same as when I got the flu jab.  Was just concerned as am on the weekly chemo doses now so getting the vaccine just 2 days before my 3rd weekly chemo cycle and it will only have been 5 days after 2nd weekly by the time I get the vaccine.  However I need to be guided by the oncologist as you say and she told me last week to go ahead with it.  The nurses tell me that my cells shouldn’t dip as much during the weekly cycles so hopefully that will make a difference too.  Currently on the first week after my first weekly Pax so monitoring myself daily for the side effects.

Thanks again for your help.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Kaz, 

I too had my first jab (Pfizer) before I started chemo. I had my second one on Saturday 3rd April, which was three weeks after my last chemo session. I don’t have any major side effects, just a slight temperature on days one and five and a few headaches. 
In the week before your next chemo, your immune system is supposed to be better so it is a good time to have it, according to my oncologist. 
Siân xx

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Linda,

I had my second Covid jab last Saturday, 3 weeks after my last chemo. I had a sore arm for a few days and a couple of times a very low grade temperature. A few headaches too. Overall, I didn’t feel bad at all, though. My oncologist advised that it is best to have it in your good week just before the next chemo, so hopefully you’ll be fine. 
Sian xx

Kitkat23
Member

Re: February 2021 Chemo Starters

Hi Lottie

hope you don’t mind me jumping in ( had chemo July 20)....I’m on citalapram....couldn’t take domperidone due to taking pregablin so had cyclizine and ondansetron for both EC and paclitaxol....never had nausea or vomiting once.....both are fine to take with citalapram.

take good care

LottieLaing
Member

Re: February 2021 Chemo Starters

@Gelbel @Ah that’s the ones I got this time but they don’t agree with citalopram which I take ... do you still feel sick on them slightly or does it stop nausea? X

Gelbel
Member

Re: February 2021 Chemo Starters

@LottieLaing when I said I took 2, it was one in the evening and one the next morning, not at the same time. The tablets I have are Metoclopramide 10mg. Onto be taken 3 times a day as necessary. 

Kaz11
Member

Re: February 2021 Chemo Starters

Thanks so much @Gelbel 

Sounds the same as what they said to me I would be given as it was mentioned it is to prevent it spreading to the bones.  Will wait and see when I have to get it.
I have to get tablets too for years (they have called it endocrine treatment when talking to me) likely tamoxifen or letrasole.  They have said it is to get rid of my hormones as my BC was hormone positive.  Goodness knows what the menopause symptoms will be like then, it’s bad enough now!  Like you I will be rattling and to think I barely had to take any medication in the past.  Changed days.

Thanks again for the info.

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Gelbel .... hope you don’t mind me asking what antisickness tablets you take when you say you take two? 
I got new ones this time but when I checked if the were ok to take with citalopram they weren’t so ive just carried on with the domperidone for now. It’s my last EC so I’m hoping I won’t need them much after this. X

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

Bisphosphonates are a drug used to help osteoporosis - bone strengthening etc. 

Research has shown bisphosphonates reduces the risk of breast cancer spreading to the bones and elsewhere in the body in post-menopausal women being treated for primary breast cancer. It's still in trial and, at the moment, recommended to be taken for 3 years.

Given as IV with chemo every 3 cycles when vit D levels acceptable and as tablets after.

I'll also have hormone tablets for 10 years. 

I'll be rattling! 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Sorry chemo brain in gear so have another question I should have asked in last post 🙈.

Re bone infusion - is that a bone strengthening drug?  I have been told I have to get this every 6 months for 3 years but haven’t had it yet.  I thought I would likely be getting it at the end of my 9 weekly Paclitaxel doses but not sure.  Can’t remember the name of the drug I’ve to get.  My legs are aching a lot at the moment too - never sure if it’s chemo or menopause related or a combination of both.

Thank you.

Kaz11x

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 
Thanks for the Pax info.  I also had a flushed face on Friday (day after treatment) and wondered what had caused it.  Thought maybe the sun had caused it however in hindsight my mask covers the area affected so it couldn’t have really caught the sun.  Kept checking forehead in case I had a temperature but that explains it. Have sent away for sunscreen for face anyway.

Thanks so much.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Linda1967 

That's it in a nutshell and then some for me. Although I didn't have insomnia. I'd say more severe jet lagged than drunk but I do know what you mean.

Deffo steroids as for last EC cycle only took half of dosage at home and I wasn't so bad but still had a grotty 24 hours (lunchtime to lunchtime) on day 5. As against a grotty 2-3 days.

So my 1st of 9 Pax on Friday. This is what I just this minute WhatsApped to my bother who asked after me with a couple of word changes...

I'm loving the new stuff... so far. So much better than days 1 & 2 after EC. Virtually no side effects at all.... except waking up just gone 2am yesterday and not getting back to sleep. So I got up and did house work at just gone 5! Thanks steroids! Not happened before. I can usually nod off after an hour if I wake in the small hours.

Also had Piriton infused so you'd think it'd contradict the steroids. In a way it did as I was able to drive home... as in hubby didn't need to get a cab to the hospital to drive me home. #result

Slept OK last night. Got a bit of a flushed face/chest - can happen with 1st dose of Pax.

And I had my bone infusion this time so could expect a few aches and pains from one or other but nothing. 👊

Only took 2 nausea tablets Friday night and Saturday morning 'just in case'. Did have one an hour ago as totally missed lunch to go for a walk with a pal. If I don't time eating right in the few days post chemo that's when I feel 🤮

So all good!

End of message.

If you bob on the January 2021 starters thread, you'll see that @Belinda_F thinks 1st Pax is a bigger dose than the rest. Be wonderful if that's true. 

All the nurses I've spoken to say Pax so much easier than EC and say EC is not a very nice chemo at all. They only say that when you've completed it.

I hope Pax is a walk in the park for you. 

Love AnGELa x

 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi ladies

I am due to get my 2nd covid vaccine (Astra Zeneca) on 20th April.  I got my appointment for it at the time I got my 1st vaccine.  Got the first one ahead of my first chemo.  Didn’t have a reaction to the first jab but bit more concerned about the second one in case I do and it affects me getting chemo 2 days later.  I checked with the oncologist last week but she said the policy up here is that the only reason not to get the vaccine would be if it clashed with a chemo day.  My jab is due on the Tuesday with chemo scheduled for Thursday.  I have heard reports that you get a larger dose with the second vaccine but not sure how true that is.  Will just need to wait and see but I’ve certainly been told to go ahead with it.

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Linda1967  Hi Linda I just had my last EC on Friday and feeling really 🤢 today .. but I’m glad to be done with it too. I start my new cycle on 30th April. Pertuzumab, Docetaxel and Herceptin.. like you I’m anxious about reactions/side effects but they say it’s the treatment that really hits the tumours hard so it’s good news really isn’t it ? How did you find the nausea on EC ? 

linda 😊 xx

Linda1967
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

I think I noticed on one of your posts a while back that you had some problems with the steroids. I think I did too.
But I dont know if my symptoms on EC were chemo or steroid related. Out of head feeling, irritable, restless,insomnia, over emotional. Drunk in a horrible way ! Were you the same?

Linda x

Linda1967
Member

Re: February 2021 Chemo Starters

Hi ladies,

I very much enjoy reading your posts, even if I don’t post much myself. You all seem to be doing so well. Finally finished my third and final EC cycle. It was not nice, glad that’s done with. Is anybody else now starting weekly Paclitaxel plus three weekly Herceptin and Pertuzumab? If so, how are you feeling? I start next Monday. Feeling anxious because it’s all new drugs and side effects, but hoping it’s easier than EC was. I’ve heard through the grapevine that these drugs tend to be more tolerable than EC chemo drugs. Wondering if anyone has any experience of this?

Also, I’ve been offered my second covid jab (Pfizer). I felt fine after the first one. Has anyone else had their second jab yet?

Hope you’re all managing to enjoy the weekend as much as possible. Sending love.

Linda x

Teagold
Member

Re: February 2021 Chemo Starters

@Gelbelkudos on the chicken biryani - I’m really missing being able to eat anything and everything and always having an appetite, curry takeaway was a standing treat but not sure I could take it now. Managed an M&S Chinese last night but even that was on the spicy side for me - so boring to have to cut certain things out that I used to love and of course the booze too. I love a glass of wine but can’t bear the idea of it now. I find the weeks when I get paclitaxel on its own I don’t get the same metallic mouth taste as with the carbo weeks but feel more like I’ve been drinking seawater, everything tastes salty even sweet stuff, but that’s easier to deal with than the carbo aftertaste for sure. 

I’m up for a ceremonial team burning/destroying of chemo clothes when this is all over - except that I’ve been wearing one of hubby’s shirts each week (next best thing to having him come with me, was the theory) so not sure he’ll thank me if I torch it!

tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

I’m the same as @Gelbel and am on weekly doses of Paclitaxel so hardly had any take home meds this time.  Only one anti sick med if needed and stuff to rinse my mouth with if I get ulcers.  Got anti sick stuff via IV on Thursday prior to the Paclitaxel.  I was told by the nurses that you need to take the injections and other meds on the Docetaxel but don’t know if that’s a general rule or not.  I will only need injections if my cells don’t bounce back in between.

@Gelbel your meals sound fab which is a good sign that I am thinking that way I suppose.  I am still a bit wary about spicy stuff but may be brave and try something soon.  Ha ha red wee!  Not missing EC at all!

Kaz11 x