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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

 

Hi Spottycotty and everyone else.

 

iv not been feeling too bad thank you. Not sleeping great even though I’m feeling so tired. The steroids are keeping me awake. An achy arm still but seems to have eased a bit from last week. I’m Currently sat with a hot chocolate and a heat pad on my arm 😆. Managed a little walk to my local shops today, albeit a woozy headed one it was nice to get some fresh air after being inside most the weekend. I do find the EC does make my head fuzzy 🤪 been a few comedy moments of me saying random things and also my 18 year old daughter looked at me slightly worried as I sprayed air freshener onto the work top and wiped it down instead of antibacterial spray! Anyway hoping I can muddle my way through this week somehow.

 

 

Nice to catch up on how everyone is. 

Hope everyone’s feeling as well as possible 😘 xxx

Member

Re: August 2019 Chemo Starters

Hi Julie,

 

Thanks for your reply.  Yes, I agree that Days 5-9 have been the worst on the Docetaxel, particularly in relation to the bone pain, and that everything feels better once the filgrastim injections are done.  I am on Day 12 and now feeling pretty OK, although still having occasional episodes of loose stools/speeded up digestive transit for which I am taking the loperamide my unit provided. 

 

The team who are looking after you sound similar to mine - I have a consultant oncologist, a consultant surgeon, and a breast care nurse who links everything together.  I had an initial appointment with the surgeon in July, at which point she booked me in for an appointment on 28 November to discuss the surgery.  At this point I should be just over one week after my final chemo session, if everything goes to plan.  I think that I will only get the surgery date on 28 November, but I understand that it should be in December and that it will probably be about 4 weeks after the final chemo.  Given that this takes us to Christmas week, though, I’m not sure what will happen!  I would ideally like to get the op over before the end of the year, as I am supposed to be going back to work at the start of February, but I will just have to go with the flow.  Hopefully we will both get our dates sorted out in due course, and will be able to plan better for Christmas.

 

I hope that everyone on the thread is well, and enjoying the evening.

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty,

 

I see that you will be having your first Docetaxel next week, and I’ll be having my second one (plus the Herceptin and Perjeta) next Wednesday.  I felt exactly like you before my first one, as I had got used to the ups and downs of the EC, and knew roughly what the treatment cycle would bring, but was apprehensive of the new regime and side effects.  

 

I am now on Day 12 after the first Docetaxel, and am feeling OK but have had a few points where I have had rough side effects over the period of Days 5-9.  Nausea/sickness have not been a problem, and I really hope that you will not have them either - my chemo unit told me that Docetaxel is less likely to produce these effects than EC, but that it does tend to hit the digestive tract lower down in the form of diarrhoea (they gave me a box of loperamide as a precaution).  I have found that they were right - I have had a few bouts of loose stools which have been a bit annoying as they are unpredictable.  The loperamide has sorted them out, though, although I am not sure how long through the cycle I will need to take it (I’ve been taking 1-2 tablets per day over the past couple of days).  The other side effect which I have had is the bone pain, which hit around Day 5 in the middle of the night and was quite bad, but which subsided after I took paracetamol.  It then was OK for a couple of days, and came back in the night around Day 8.  It seems have gone completely now, particularly as the filgrastim injections are finished.  I haven’t had a woozy head feeling at all with the Docetaxel, and seem to have felt less physically tired than on the EC, so some things have been better.  

 

Like you, I am hoping to enjoy the next few days and get out to a few places with friends before the next treatment cycle starts.  I hope that you have a good time meeting up with your friends, and that Docetaxel is kind to you!

 

Blackcat xx

 

Member

Re: August 2019 Chemo Starters

How have you been Lisaloo??

Member

Re: August 2019 Chemo Starters

Awww Em, there’s nothing worse than feeling sick is there! Really hope Shi’s advice works for you 🤞

 

Starting to dread next week already, I’m starting on docetaxol so feel like I’m starting from the beginning, I haven’t got any idea of what to expect really, I know it makes your bones hurt, I’m hoping that I can swap the nausea for  that awful Side effect, I’ll be gutted if I get both!! How is the sickness for everyone else on that drug?? black cat??

Anyway, I’m going to enjoy this week, meeting friends etc while round 4 is looming in the background.

 

Realky hope everyone is well xxxxx

Member

Re: August 2019 Chemo Starters

Thank you Shi will definitely ask about that...the sickness really gets to me, it’s like a scene from the bloody exorcist, so anything to make it a bit easier xxx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Em have they tried you on akynzeo? I had to take that 1 hour before chemo then after meds were metrochloptomide (excuse my spelling) you’ve mentioned it below. Might be worth asking 😘it worked well for me that combination sending 👭👭💪💪💪💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Blackcat (and everyone else)

Good to hear you're not feeling too bad on the Docetaxel.  My worst days each time have been Days 5-9, so hopefully you're tolerating it better than me (unless it's the Carboplatin causing issues in my case).  I seem to feel much better once the filgrastim injections are done each time (7 days seems forever whilst I'm doing them!). 

 

It certainly does sound like we're on very similar treatment paths - I'm waiting to hear when I'm likely to have surgery... there's a team at the hospital I go to, and I've been allocated to one chemo consultant; one surgeon; one breast care nurse (not that she has done anything); and others, so I get passed around depending on which part of the treatment I'm on at the time.  So, the chemo consultant will refer me back to the surgeon after 5th cycle and it will then be decided when the surgery should take place.  I'd like to know sooner, really, although having the final chemo date - which I was only given last week - will have to be enough for now.  Obviously I'd like to plan for Christmas, but it sounds like I'll just have to wait until early November to find out.

 

Best wishes to everyone for a relaxing Sunday and thank you all, once again, for sharing your experiences.

Julie xx

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Re: August 2019 Chemo Starters

Hi lovely ladies,

 

love the chemo coma description....so so true! Happy birthday spottycotty for next week have the best time celebrating!! Love the days when we feel normal!

 

had my 3rd FEC on thurs so just coming round, I seem to be really sick (on an anti sickness patch 48 hrs in advance, emend, ondensatron, dexamethasone, metoclopromide and the injections) and still horrendous...but not hospital admission horrendous like 1st time!  Nurse said they can’t really do much more for sickness other than sedate me for 3 days 😳😳😳 no thanks!!!

 

anyway we are really getting there ladies, u r all an inspiration to me and helps to keep chin up that we aren’t alone 💖 

 

love to all xxx

Member

Re: August 2019 Chemo Starters

Glad it went well Julie,  hope you sail through the week to feeling well again xxxxx

Im at mums for the weekend with the kids so we are all getting spoilt and being constantly offered food!!! Hahaha!!!

 

looking forward to next week as it’s my ‘good’ week, lots of coffee and lunch dates then it’s my birthday on Friday and we are going away somewhere apparently...can’t wait!! 

 

Have a good weekend everyone xxxxx

Member

Re: August 2019 Chemo Starters

 

 

Thank you ladies 😘 

 

weathers been horrendous here too so definitely a curling up on the sofa weekend. Iv actually transferred myself to bed now to watch tele so that’s me set for the night. Slight nausea and starting to feel verrrry tired now so most likely be asleep soon if this sickness keeps alway 🤞🏽 

I think your so right about the nurse Julie! I was actually going to say I don’t want you to give me it if she was there today 😂😂 she wasn’t though so all was good. The nurse I had today was so lovely 😊 

 

I’ll go off into my “chemo coma” now and update you all soon.

 

Thanks again for all your well wishes 😘  

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Well done Lisa.  The nurse you get does seem to make all the difference, doesn't it?  Glad to hear another one over.

 

Julie xx

Member

Re: August 2019 Chemo Starters

Hi Lisa,

 

I’m so glad to hear that you had a better experience with the infusion this time, and hope that the side effects stay at bay.   Cosy on the sofa is the best place to be on this rainy day - it’s where I am now too, with my two cats curled up snoring beside me.  Take care of yourself and I hope that the next few days go smoothly.  Another treatment down is a great achievement, and one more big step towards the end of chemo!

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

So pleased you had a better experience Lisalou and hope that your recovery from this one is as SE free as possible.  Its a weekend for snuggling on the sofa I think - its bucketing down here at the moment.  

 

Have a good weekend all

 

xxx

Member

Re: August 2019 Chemo Starters

 

 

Thank you Shi once again for your advice. 

 

Im all done and back home now. It was all fine the nurse was lovely. I went over my concerns and she said the message had been passed on and they’d kept my meds out of the fridge once they’d been brought up and she put it through a lot slower than the nurse last time and into a different vein. 

Another one down.. so one more EC to go in 3 weeks then on to paclitaxel. 

Im feeling ok at the minute but it’s been about tea time when Iv started feeling sick the last couple of times so I’m just waiting for that to kick in. Pjs are back on and all cozy on the sofa. 

 

Hope everyones ok. 

Lisa xxx

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Community Champion

Re: August 2019 Chemo Starters

Lisaloo, get the arm in sharps bucket of warm water, get the heat pad on arm while they do it and remember it’s dr chemo, the extra doctor on the inside with its light sabre zapping power 👍😁😁💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

 

 

Spottycotty that must of been awful for you! Not a nice experience at all. Thank you Shi for the advice 😘 I am getting quite anxious about tomorrow now with my sore veins 😫 the ward sister assured me that when the medication is brought up it will be kept out of the fridge so it’s not as cold as I’m in at 10 and it’s only brought up at 9.. and she’s also having a word with the nurses to administer it slowly as I told her I felt it was forced through quicker last time.. so fingers crossed all will be well 🤞🏽😫 

 

Nice to catch up with everyone’s progress. Hope everyone’s feeling ok 😘

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi everyone

So great to hear how we are all getting on - you are all such inspirational people.

 

Spottycotty - can empathise completely re the sore veins and so sorry you had a bad experience with one person.  Sadly it happens.  My main discomfort started last week in the vein that I had the original boluses through - its not at the site as such but up to my elbow and its weird it started so long after the actual cannulation.  I can only put it down to the dose of epirubicin which has now been reduced following my initial reaction.  The second site is a bit sore and the vein is getting harder.  Slightly worried I am going to run out of them if I continue!  Don't want a PICC though.  Loving the description "chemo coma" - perfect!

 

Lisa - wish I worked at your spa - what a great boss.  I really miss the gym too and I think that is what has caused my problems in that I am getting a bit depressed not feeling well enough to go out and about for a week.  Crazy really, its just a week but it seems an immense problem at the time.  Now I feel relatively OK its hard to remember how despondent I felt last week.  I just don't think I have the energy to do a zumba class or even some time in the gym itself especially as my insides are still all over the place (sorry, too much info).

 

Blackcat - well done on getting through the marathon last week relatively unscathed.  I am pleased the nausea is not as bad - that is a really unpleasant feeling isn't it?  Re the bone pain.  I have had the GCSF injections since cycle one and in my experience the side effects kick in around days 6/7 which the CNS tells me is about right.  The pain that you describe as needles is very accurate but I felt it mainly in my sternum and my lower back - not constant but sharp and unpleasant.  Easily controlled with paracetamol though.  So it could be the injections or the Dox I guess.  I did not feel it in my thighs or hips but they are long bones and so could be affected by the GCSF doing its job.  The pain went within 24 hours of stopping the injections both times.

 

Julie - so sorry you had to endure a blood transfusion as well as everything else.  This does take its toll doesn't it but as you say we are all getting through it - there is a big part of me that wants to carry on and not stop after the FEC so we shall see how I feel about it in a couple of weeks but I know that either way we are all well on the way to finishing!  

 

Love to all  xx

 

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Lisa and sportycotty, see if they can let you have warm water in a sharps bin too prior to being canulated and ask for the heat pad to have on your arm while it’s being done 👍I had a shark bite arm by end of fec that I couldn’t straighten fully either, use ibrprofen gel and heat pad at home, I got a long heatpad from Sainsbury’s, great as I could wrap it round or have it the length of the arm at home 👍Your arm will recover, it does take time but it will recover and if you get any chemo burns they do fade, it does take time ❤️❤️ 💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi lisa,

 

Im not being dramatic but it still makes me feel sick talking about that day!!!

she was pushing it through so fast, it was sooo painful, she then said that she probably should have used heat pads and put her hands on my arm instead, heat pads were used the first time but I didn’t realise I needed to ask 🤷‍♀️ She then said that she had been on holiday and had lost her routine, I was 2 hours behind my appointment time as she said they were just waiting for my treatment, however, she snapped a syringe full of treatment and nipped round to the desk and reappeared within 5 mins with a new one!! Thing was, it’s was straight from the fridge and flipping killed me!!!!!

That was 4 weeks ago now and I’m struggling to straighten my arm, they told me to use the gel. I’ve still got track marks up my arm too.

Saw onc before 3rd treatment and he mentioned a pic line, I said I really didn’t want one. He went to the chemo room and returned with a nurse that found an alternative vein, that’s when the horrid nurse refused to administer it so onc obviously said something.

Anyway.....the male nurse that did administer it was lovely and took really good care of me but said it could be a long time before arm recovers ...

It was just one of those things, I would just accept it’s part and parcel but I do blame her!!!!

Sorry for the long post!!! What I meant by all that was....they will more than likely be able to find an alternative vein, I took my own heat pads but the male nurse just stuck loads of hospital ones all over me 🤣 they definitely make a lot of difference in my opinion.

Good luck for Friday, let us know how you get on xxxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi Spotty scotty

 

my arms hurting too from my second round of EC! I’m due my 3rd on Friday and I’m really not looking forward to it as I’m worried it’s going to hurt! I feel my 2nd was pushed through quicker than the first so Iv mentioned that to the pharmacist and chemo ward sister today and she’s going to tell the nurses to do it slower this time and they’ve told me to use the bags you put in the microwave that others on here have mentioned to ease it and also rubbing ibuprofen gel into it too also helps. 

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi Julie,

 

Apart from the Carboplatin, we seem to be having quite a similar treatment regime - and I see that our planned final chemo dates are similar too - mine is 20 November if all goes well!  Like you, I will be having Herceptin and Perjeta injections in due course (I am HER2+ and the plan is for 18 injections, with treatment every three weeks).  My oncologist also told me that I will be able to go back to work as normal during the injection treatment period, and that the H/P does not tend to cause side effects (which indeed is what I have found so far).  After chemo finishes in November I will have a short break from treatments to let the body recover before surgery in December, so the journey is obviously still a long one, but the light at the end of the tunnel is definitely getting a tiny bit nearer.

 

As far as the Docetaxel side effects are concerned, I wouldn’t say that I feel particularly tired so far (it’s Day 7 now), but find that the worst thing seems to be the pain in various bones which comes and goes.  It woke me up at 1am last night (it felt as if my hips and thighs had been stapled to the bed) and I had to get some paracetamol and walk around a bit until it subsided. I know that the filgrastim injections cause bone pain too, and I have one more of these to do tomorrow, so it’s difficult to know what’s causing the issue.  I haven’t had any digestive problems/loose bowels from the Docetaxel yet, but am taking one loperamide every two days just in case they start up.  Compared to the EC I had before, I don’t have any queasiness or appalling taste in the mouth, which is a bonus.  I’m sorry that you have had low blood counts, but hopefully the blood transfusion will have helped with this and you will feel less tired soon.

 

We are now both three cycles in, so halfway already which is good progress.  It will indeed be wonderful when all of us on this thread get near to the end of our chemo - we will have to have a virtual celebration when each of us does the last one!  

 

Love and best wishes to everyone on the thread.

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

Hiya everyone,

 

I'm just emerging from the chemo coma, I’ve managed to get out and about today, I’ve been a bit impatient this round feeling well again, it hasn’t been any longer than usual, I think I’m just fed up of feeling crap!!!!

I've had my last EC now so I’m moving into docetaxol next, bit nervous of the change to be honest although I do really hope this nauseous feeling will go..

My Arm still hurts from round two, we think my consultant went and told the nurse who administered it off, she refused to do my 3rd round which was fine by me!! She kept saying I’m not doing you today, I’ve refused, expecting me to say ‘I don’t mind if you do’ but I just replied ok!!! She can do one!!!!! 😆

My hair is lank and flat but hanging in for now too ...

Off for a change of scenery to mums at the weekend, I’m sick of seeing my house at the minute!! Going slightly stir crazy 🥴

 

Wolvesgirl, I hope you get the answers you want/need from your onc to make the right decision for you.  it’s such a tedious journey isn’t it, I do understand how you feel xx

 

Glad everyone else seems ok, although Julie, it sounds like you’ve been through the ringer having a transfusion ... are you feeling better now??

Member

Re: August 2019 Chemo Starters

Hi everyone

 

Hope you're not suffering too much on the Docetaxel, Blackcat?  I've been on that (plus Carboplatin) since the start (3 cycles now) so it's difficult for me to say whether it's the Docetaxel that's causing me the tiredness or the Carboplatin.  In fact, my second cycle was pretty bad and when they took bloods prior to the 3rd cycle they decided to reduce the Carboplatin to 88% of what I'd been given previously as my haemoglobin and platelet counts had fallen so low.  I had the 3rd cycle on Thursday last week (8 1/2 hours!) and then had to go back in on Friday for a blood transfusion (another 5 hours).  So hopefully it's the Carboplatin that causes many of the side effects and Docetaxel is treating you more kindly.

 

I've also been on Perjeta and Herceptin since the first cycle and, like you, was initially given it on a different day to the chemo drugs to check for any reactions - none, luckily!  But those two are definitely fine and don't cause hardly any side effects - so the nurses tell me.  I think that's right, in that I will be having another 12 P&H after the end of the chemo and have been told I'll be able to drive myself to the hospital and back, and go to work without any issues.  I think I'm having such a lot of treatments because I'm Triple Positive.

 

Wishing everyone courage and all the very best as we go through this.  Won't it be wonderful when we all start saying that we're nearly there, and will be finishing our treatments?  If all goes well, my last chemo will be 21 November so I'm looking forward to that!!   Julie xx

Member

Re: August 2019 Chemo Starters

 

Hi ladies 

 

hope your all well? I have indeed been enjoying my chemo free days! Just sat in the hospital waiting for my bloods to to taken ready for my 3rd EC on Friday. Iv been getting slightly anxious about it as my arms been aching and still a bit tender round the vein where the chemo is put in. Going to mention it in clinic today. 

Im usually at the gym 4 times a week as well as working 40 hrs so I’m actually struggling to sit still and relax! I work in a health spa so have been taking advantage of my managers offer of using the new sound frequency bed whenever I want. It’s soooo relaxing 😌 you lay on a water bed in a dark room which sends vibrations up and down your body while listening to binaural beats through head phones. Really good for making me relax a bit more. Anything’s worth a try. 

 

Hope everyone is as well as they can be.

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl (and everyone on the thread),

 

Good to hear that you are doing OK, and I hope that you enjoy your two meals out today.  I also hope that your upset stomach settles down soon (chemo tum is no joke, is it - my digestive system is normally cast-iron, but since starting chemo I never know what to expect with it).  My tastebuds now seem to be working only sporadically after the Docetaxel - in the afternoon/early evening I get a respite of a few hours where I can taste everything fairly well, but in the mornings and late evening everything tastes either repulsive or of nothing.  There is no queasiness, though, which is a good thing.   I have not had the diarrhoea which is common with the taxanes, but am taking one loperamide every two days just to stop the digestive transit from going too fast.  The only other side effect I have had is intermittent bone pain, which started on Day 4 and feels as if little needles are being jabbed into the centre of the your bones.  It can be either a side effect of the Docetaxel or of the Zarzio (filgrastim) injections, apparently, so I am hoping it will subside once I do the last injection tomorrow.  I am managing it with a couple of paracetamol when it gets too bad, which so far has only been twice.  

 

I can totally understand why you are thinking of making your next FEC the last, given the risks/benefits figures and the fact that you had such a tough time in an earlier cycle.  It’s good that you have been able to weigh up all the factors and discuss them with the nurse, and the discussion with the oncologist in due course will give you a final chance to ask any remaining questions if need be.  I hope that your next/final FEC goes well, and that you enjoy the next week before treatment!

 

Love and best wishes to all on the thread - I hope that everyone is having as good a day as possible. 

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hey Blackcat and everyone

 

Hope all are OK and the fact that we are quiet is because we are all out enjoying some chemo free days and not because we are too ill to log in!  Blackcat - really interesting about the differences in your taste buds - I love cooking as well and have just bought the new Jamie Oliver book as we are veggie and I find that by about day 11 I am up for trying one of the recipes out.  Up until then, I find I almost crave some foods but when I have them they taste so odd I don't really enjoy it.  Binge watching Downton Abbey doesn't help as it seems that nearly every scene happens at a table - they are always eating!!  How are you feeling now after the Docetaxil?  I hear varying accounts of side effects so I do hope you are on the minor side and are feeling as well as can be expected.

 

I have my next FEC next week so have just over a week of freedom before that.  It will be my last FEC and I have had a long conversation with the nurse about calling it a day then.  The FEC gives 4% of the total 6% benefit of chemo and to be honest I am struggling with the whole thing so that seems a compromise to me.  Also if I have the biphosphonates they will add 2% benefit on so it balances it out a bit (although I know I am still 2% adrift).  I have balanced it with all the other factors - early detection, no node involvement etc and thats where I am.  I have still to have the discussion with the oncologist which I will have in about three weeks. Anyway, its for me to consider but thats where I am at the moment.

 

Today am out for lunch and then supper (nothing wrong with my appetite) but have a bit of an upset tum so I hope that settles.  Another joy of this chemo journey.  Go safely everyone and I look forward to hearing how you all are.  xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl and all on the thread,

 

Glad to hear that you are feeling better, and I hope that you have a great time at your two outings this weekend!  I’m sorry to hear that you have joined the thinning hair club (my bald head with a few wisps has definitely moved way beyond the tragic stage, but I am now embracing my wigs which look OK.

 

Yes, I have had quite a marathon in the chemo unit this week - 9 hours there on Wednesday for the first Perjeta and Herceptin infusions, and then 4 hours yesterday for the first Docetaxel.  The sessions were so long due to the time required in the first treatments for staff to monitor for adverse effects (particularly with the Herceptin, where I was disconnected from the cannula after the 1.5 hrs treatment, but then had to be monitored for 4.5 hrs).   Luckily I did not have any adverse reactions, and so will be able to have all three drugs together in a shorter session for my final three cycles.  It feels good to be half way through my treatments - the time has actually passed quite quickly.

 

It has been interesting to move on to the new regime, as I have found quite a few differences so far in comparison to the EC treatments.  The first thing I noticed is that I felt absolutely nothing during the infusions, maybe because they drip slowly from a bag and are not pushed in from a bolus like the EC (where I could feel the bad taste that came with the C, and also a bit of a cold feeling when the E was pushed in).  An unexpected surprise was that as soon as the first new drug went in (Perjeta), I lost the unpleasant metallic mouth taste I have had off and on during most of my second EC cycle.  My taste buds seemed to return to normal immediately, for some reason - the staff gave me a tuna sandwich just after the Perjeta finished, and it tasted wonderful (I then followed it up with a muffin, a banana and a chocolate bar, I’m ashamed to say, and everything tasted as it used to).  When I got home I decided to make an Indian butter chicken dish with saffron rice, and I could smell all the individual spices and later taste them in the dish.  I normally love cooking from scratch, but during the EC cycles could not normally face it, so am really pleased by this change.  I know that Docetaxel does cause taste changes and so am not expecting it to last, but so far, so good!   I also don’t have the woozy head or queasy feeling I used to have immediately after the EC treatments, or - at least at the moment - any other side effects.  I did my first Zarzio injection this afternoon, as I was not given these with the EC, and so far this seems to have gone OK too.  I do have the usual goody bag from this hospital with remedies this time for diarrhoea (large box of tablets, so does not bode well... ) and bone pain, so I expect that some horrible side effects will kick in shortly (probably tomorrow, as I have my last high dose of steroids tonight), but for now things are OK, and so I can’t complain. As we all know, we have to make the best of the good points on this treatment rollercoaster, as there will probably by a dip coming up,  

 

I hope that everyone is having a good Friday evening, and that weekend will also be kind to us all.

 

Blackcat xx

 

 

 

 

Member

Re: August 2019 Chemo Starters

Hello ladies

 

Hope everyone is OK on this beautiful Friday - I am slowly returning to the land of the living following my second cycle a week ago.  Hair is tragic and I couldn't possibly go out without a wig now.  I am getting tired of it falling out but it has slowed down a bit now.  It seems that days 4-8 are my bad days and maybe thats how it will be but I will have a discussion on Monday at clinic about treatment.  I am almost looking forward to radiotherapy now just as it will mean that the chemo bit will be over.....

 

Blackcat - how has your week been as you had a bit of a double hit didnt you?  I do hope you are OK.

 

Off out of the village later for the first time since I got back from the hospital last Thursday - yippee!!  Then hopefully tea at a local hotel with some ex work colleagues tomorrow.  Have a good weekend everyone, much love xxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi Ladies 

 

hope your all ok. I’m now 12 days post EC and feeling pretty much back to myself so trying to make the most of it and been for a cuppa with friends today. 

Blackcat Glad you got booked onto the look good feel great.. you were saying about the magnetic eyelashes.. my friend was literally just telling me about those today. Also worth a look are the C lashes that eyelure do, they have them in boots or you can get them on line, I looked in Superdrug for them but couldn’t see any. There were designed by a lady that’s been through cancer herself and found the usual false lashes hard to put on when you’ve no lashes there to put them onto! The C lashes have an invisible strip across the top which stops them dropping down. Iv not tried mine yet as I still have my lashes in tact... for now! Worth a little look though. 

No reason why us ladies shouldn’t still look glam when going through such a rubbish time..(saying that I most definitely don’t look glad the week after my treatment 😆)

 

big hugs to everyone

Lisa xxx 

Member

Re: August 2019 Chemo Starters

Hi Blackcat and everyone else

 

Blackcat - You are absolutely right about the steroids and the drop in feeling well when they stop - I should have thought of that.  I am sure that is what is happening with me as I have felt so dreadful the last few days - day 7 today and slowly, slowly feeling a bit better so fingers crossed that continues.  I do hope that your change in treatment goes well and is not too awful - it sounds such a long day today for you and then Doxetaxel on Thursday which I think (I am told re me) is about an hour.  Hopefully the side effects will be less than with the EC for you.  Thanks for the stirring words re hair and appearance - I have not been as robust as I would like during this process and if it wasn't for all of you would have crumpled some time ago.  I have to say I am still considering stopping but that is for discussion next week.

 

EM39 - how funny hiding from the wind!  I know what you mean though, the trail of hair I am leaving behind me everywhere is getting extremely irritating and even though I only comb it once a day I seem to comb loads out.  I couldn't go out without a wig on now - I look like my granny on a bad day!

 

Keep strong everyone - you are all doing a fantastic job and we are all one day closer to finishing this journey together. Thanks for all support as ever, xxxx

 

 

Member

Re: August 2019 Chemo Starters

Hi ladies, 

 

Not been on in a while, glad to see your updates and that docs are managing side effects where possible.

 

You are all amazing and it really helps hearing how everyone is getting through this. You are beautiful hair or no hair, and it’ll be back in no time! My wig is much nicer than my actual hair although not wearing it yet as I’m cold capping and still have about 50% hair...had a good laugh about the wind blowing hair off in a previous post...it was windy last week and I was literally hiding in a corner in case it took off with the wind 💨 

 

supposed to have 3rd FEC tomorrow but just had call from hospital that I need to delay a week as blood count too low! Quite disappointing as I feel well but suppose this is necessary to prevent complications! They are going to give me an injection next week to help with this! I’ve bleached my whole house in preparation for tomorrow so at least my house is looking good 👍

 

Take care ladies  xxx

 

 

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

I’ve had some problems logging into the forum over the past few days due to a technical issue (the system was not recognising my password), but today everything is back to normal - not sure if anyone else has been having difficulties?

 

Wolvesgirl - so glad to hear that you are at home and not in hospital.  I am not having the injections, but on both EC cycles I have felt fine for the first three days after treatment (when I am on steroids), and then worse on days 4-8.  I had a review of my EC treatment with my oncologist last week, and she said that this pattern is common and is (in my case as least) due to the ending of the steroids, as they protect against SEs from the chemo.  I’m sorry to hear that your hair is coming out, but 50% or so left doesn’t sound too bad at all.    I would say that I have about 2% left in the form of a few wisps, which I have not shaved off as my scalp was too tender, so it is definitely a hat/wig for me these days.   I know what you mean about feeling old, ugly and yuk - when I catch a glimpse of my bald wispy head in the mirror, I feel depressed.  However we are NOT old and ugly - we are just going through some tough treatment which is battering our bodies at the moment, and it is only temporary.  Hair will grow back in time, and our bodies will recover - and each day is one more towards the end of our treatments.

 

Lisalou - thanks for telling us about the LGFB session, which sounds great.  I am booked into one on 7 October, and your description made me look forward to it even more.  I noticed over the past few days that the outer parts of my eyebrows are beginning to disappear, so I could definitely do with some advice about drawing them in.  I am expecting that my eyelashes will go shortly too, so am hoping that they might also be able to give some advice about products like magnetic eyelashes

 

I have a change in my chemo regime this week, as I am moving on to Herceptin/Perjeta/Docetaxel for the final four cycles.  I will have the first two drugs tomorrow in a long session (6-8 hours on the chemo unit, as they have to monitor for adverse reactions), and the docetaxel on Thursday.  If all goes OK, the later treatments should be of all three drugs, and should be quicker. I am a bit nervous of the new treatments and the new side effects they will bring, but this cycle will be no. 3 of 6, so at least I will soon be halfway through.

 

I hope that everyone on the thread is having as good a day as possible.

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

I'm from the Oct'17 group and had the GCSF. Like you, I seemed to be not too bad until I had them-5 with FEC and 7 with T, although I managed to persuade my onc to reduce them back to 5 after the first one! My onc said it was the chemo and not the injections that had affected me, but I'm not so sure! I've just read on July'19 thread that someone has said that antihistamines have helped, so that might be worth a try x

Member

Re: August 2019 Chemo Starters

Hi everyone

 

Hope you are all OK.  I am 6 days post second FEC and at least am still at home which is an improvement on last time!!  However, feeling rough for the last few days (the first two always seem fine) and just bored and depressed sitting around at home all the time.  Just don't have the energy to do much so am binge watching Downton Abbey and being grumpy.  At least my husband can get out and away from me because it can't be much fun for him.  Hair still coming out - about 50% left (maybe less) so wearing my wig during the day.  I just feel old, ugly and yuk!  I need to snap out of it.

 

Does anyone else have the GCSF injections?  I am having them but I wonder if they are adding to how I feel because until I start them on day three I seem to be OK.  

 

Lisalou - I hope I get onto one of those sessions - apparently there is a waiting list but I have put my name down.  A friend of mine got on it just as her chemo was ending but she said it was good.  I love goodie bags.

 

Becky - roll on Strictly Final thats all I can say.  I think my last session is the first week of December so by Christmas I should be fine.  Then just the radiotherapy to get through.  Not even thinking about that for now.

 

Love to all xx

Member

Re: August 2019 Chemo Starters

 

 

Hi ladies 

 

I feel very much the same as you Becky in that I feel like 2 different people. How I feel today in contrast to how I felt last week is totally different. I think it’s just a case of listening to your body and looking after it. 

 

So today iv been to the look good feel great session that are available to us.. have any of you ladies been to one of these?? If not I’d highly recommend! The goody bag you get to take home is just amazing!! No 7, Mac, Clinique, Rimmel and many more top quality skin care and makeup items in it. They give you tips on how to look after your skin while going through chemo and how to do your brows and make up. I just found it a lovely morning with a group of lovely ladies who are all going through the same thing. And of cause you get to take the goodies home with you. Wish I could put a picture on to show you all! 

 

Lisa xxx

 

Member

Re: August 2019 Chemo Starters

Dear All,

 

Hope you're all doing well, and it's been great to catch up on your journeys! Sorry, I've been a bit MIA on here - I sort of feel like I'm two entirely different people at the moment, either immediately post chemo smelly ghost, or on the good days I've been a bit of 'duracel bunny trying to do everything' which I'm not entirely sure has been a good plan, as I was utterly exhausted even going in for my fourth and final EC last Friday so think I've been overdoing it on the better days! I'm on day 4 post EC now and haven't even made it in the shower since Saturday (first cycles I was always up and dressed and at least walking round the park, but this fatigue is definitely culminative!), but actually doing my best not to beat myself up about this and just take it as it comes a little more this time round.

 

Hopefully this cycle will follow the same pattern as the last and I'll be up and about by the end of the week - I was quite down in the dumps at this point last time, so I'm just trying to remind myself that these are days just to get through, and actually trying to embrace the telly and the snuggly blankets! This treatment might seem like a long long time, but once we're through it we will remember this as a blip, I hope! 

 

Thanks for the weekly paclitaxel tips mini mad, I'm hoping desperately the side effects are a bit more manageable on the new regime, but a little worried about not having the 'good weeks' imbetween doses to perk my spirits up, and another 12 journeys into that dreaded chair feels pretty daunting at the moment. Wolvesigrl - 13th December is hopefully my finish date so I'm with you on the Strictly final celebrations (everything firmly crossed!).

 

Right, need to somehow move myself off this sofa to eat something nutritious for lunch - last time I went off all food on day 5 (gah) and normal stuff is already getting unappealing (the lingering smell of my husband's toast is making me feel very sick) but hoping I can locate something more nutritious than oven chips for lunch! 

 

Big love to you all - every day is another day through this! xxx

Member

Re: August 2019 Chemo Starters

Hi Julie

So sorry you have been down - its such a rollercoaster isn't it?  I didnt realise what a long treatment time you have in front of you but as you say the journey is a means to an end and I am sure you will look back on it and feel that you did the right thing.  I feel bad moaning about my 6 cycles and some radiotherapy!  

 

The portacath is a great idea - our eldest grandson was diagnosed with leukaemia at the age of 2 3/4 and had a port put in - he referred to it as his "Ironman heart" (something to do with films) and it lasted the whole 3 years + of his treatment and caused no bother to him at all.

 

Wishing you every good wish for the rest of your treatment - as you say, its great to have this group - I have found it very supportive. xxxx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

 

Thanks for the tip re Toppik - I don't know if it would be any good for me as I have really thinned and I think people will just see my hair which is normally thick and really messy looking thin and even messier.  The wigs are OK actually - I know on the Paxman site some say you shouldn't wear a wig during the day but tbh as I am trying not to let people know about this I don't feel I have much of a choice as wearing a scarf or turban will be a bit of a giveaway!

 

Glad the Toppik worked for you though.  Enjoy the weekend. x

Member

Re: August 2019 Chemo Starters

Hi julie, sorry to hear you’ve been suffering with the sideeffects, it’s true that when you tell people about nausea or fatigue they interpret it as feeling a bit sick and a bit tired but we unfortunately know different don’t we!!!

glad you’re feeling a bit more up beat, go out and enjoy yourself this week while you can!!

 

Wolvesgirl, have you tried toppik for your hair?? I saw it on the Paxman site and bought some so I was ready for when I needed it. it’s like hair fibres and comes in a tin with like a pepper pot lid so you can just shake it onto the bald patches and it fills it in, my hubby was astonished how well it worked for me, you can get different colours depending on your hair, I used mine for the first time when we went to London as I didn’t want to wear my wig all day and it worked a treat. 

You can buy it from amazon.

Maybe worth a look

for you ?

Member

Re: August 2019 Chemo Starters

Hello everyone - I've been missing from here for a couple of weeks because, to be honest, I've been feeling quite low.  I had my second treatment 2 weeks ago and have felt pretty rough since.  I called the hospital 2 days ago to ask if there's anything else I could be given to help with the nausea/digestive problems or whether I just need to put up with it, and hopefully I'll be able to have an antacid for my worse days (around Days 5 - 9).  My next treatment is next Thursday (19/9) so fingers crossed!  I have also been much more tired during the second cycle... although when I spoke with the nurse 2 days ago she told me my bloods showed I had very low haemoglobin levels - so I suspect that's why!  I'm now eating lots of weetabix, broccoli, some red meat to try to raise my iron levels in time for next week.

 

Good to hear some of you are moving on to different treatments.  I've been on Docetaxel + Carboplatin, plus Pertuzumab + trastuzumab (Herceptin) both times so far, and will continue that for 4 more x 3-weekly cycles (plus Zoledronic Acid last time and continuing).  Then I'll be having just the Pertuzamab + Herceptin for a further 12 cycles (following a lumpectomy), but those two apparently don't cause the same side effects as the chemo... so I'm looking forward to that!  In all, I'll be on the P+H for over a year (3-weekly) and then it will go 3-monthly and then 6-monthly, along with the Zoledronic Acid.  It seems an awfully long time to be having treatment but I guess it's the end result we need to look forward to, not the journey.  Because I'll be having so many drugs over such a long period I've had a 'portocath' fitted into my chest.  It was a proper operation to put it in, and I now have a lovely plastic lump (under my skin) right next to my bra strap, but it does mean all blood samples are taken through it as well as the drugs be administered through it so my veins are not suffering.  I think my biggest celebration will be when the portocath is removed (another operation!) as it will finally feel like I'm done.

 

I've also been cold capping - and didn't find it too bad at all.  I think I'll keep going as still have a reasonable amount of hair, although definitely about 50% thinner than it was with a couple of small bald patches which have caused me to move my parting around to a number of strange places!  I've bought some turban-like head coverings, but have so far resisted a wig... although I've picked one online so I can order it urgently if necessary.  Thank you very much to everyone who previously gave me some advice on wig buying - it was very helpful.

 

Sorry for all the detail, but we all seem to be having very different treatments so I thought I'd put mine on here in case anyone else is having similar.  I'm planning to enjoy the next week, now that I feel almost normal again.  I'm waiting to be given the dates for my last 3 chemo cycles, but if all goes to plan I've worked out that I should be through the chemo part a couple of weeks before Christmas - woohoo, can't wait!

 

As someone else said, although we don't know each other personally, it's so helpful to be able to be in touch with you all going through this - family and friends are brilliant, but I for one didn't know what nausea REALLY meant before starting on this so why would they?  I've been managing a daily walk for about an hour since Day 10 (I've got a very lively dog) and that has certainly lifted my spirits, although leaves me tired afterwards.

 

Very best wishes to everyone, and I hope your next cycles go well.  I'm looking forward to being half way through the chemo next time (third cycle).  Enjoy this beautiful weather - although keep those heads covered if out in the sun!

 

Julie xx

Member

Re: August 2019 Chemo Starters

 

 

Hi mini mad 

 

Thank you so much for your words of reassurance! I am hoping I can get through it and put up with all the different side effects 😳 it’s all very daunting. 

Iv been sooo exhausted these past 2 days more so than my first cycle. But I feel a lot brighter today (day 7) and have got washing out on the line (so satisfying!) and had a walk into my local town which is about a 15 - 20 min walk. Back home now with my feet up and a cuppa. 

I have also found this time that my vein where the canullar was is bruised! And a bit sore. Hoping this dies down before my next cycle!

 

hope all you lovely ladies are ok and are able to enjoy your weekends.

 

lisa xxx

Member

Re: August 2019 Chemo Starters

Hi everyone

 

Spottycotty - so pleased that you enjoyed your day at Wembley with the family - I am sure you were tired but it would have been worth it.  Good plan re the breakfast buffet - I hadn't thought of that but you are absolutely right and I am glad the hotel looked after you well.  We might be having a couple of nights in a hotel in November so will bear that in mind.  I am also delighted you have been too busy to be on the forum - I am sure thats how it should be.  I must admit I am leaving the first week - 10 days free and then putting things in the diary for the last bit before the next cycle as certainly my experience so far is that I feel pretty much normal during that time.

 

Re the cold cap - have you looked on the Paxman webpage (if you are using Paxman) and their Facebook group?  It seems that it does vary in terms of success re hair loss - mine is looking dreadful and I have a bald patch on the top of my head which is difficult to cover hence today I am practising wearing my wig!!  I feel sorry for my poor husband who has to look at it more than me bless him.  Yes, looking at the webpage once we are on Docetaxel its 20 mins afterwards not 1.5 hours and apparently its worth persevering as it does stimulate quicker hair growth afterwards.  I think I probably will although I have not suffered with it as much as you.

 

Blackcat - sorry to hear you didn't get your MRI - slightly bizarre reason but I guess these things happen!

 

Hope everyone is OK and will be able to enjoy the nice weather that we have been promised this weekend.  For me, the third dose of FEC in three weeks will be a massive point as its half way - I guess some of you are already at that point which is great - don't forget that even I (delays not withstanding) will have finished my last dose before the final of Strictly Come Dancing which is on Dec 14th - thats keeping me going!!  Love to all xxxxx

 

 

Member

Re: August 2019 Chemo Starters

Hiya everyone,

 

So sorry I haven’t been on here, I haven’t got a good excuse, I’ve just been out socialising while I can 😆

 

Wembley trip went really well, we got up real early and travelled down so by the time we got there I was tired and felt a bit dodgy. I had a micro sleep, had a bowl of chips and a tonic water and felt like a new woman! 

Managed till 11pm so I was pleased with that.

Wolvesgirl...reference the food ... I just rang the hotel beforehand and explained I was on chemo and I couldn’t eat a buffet breakfast. They reassured me that they would cook my food fresh etc which they did, they were very attentive actually. 

I also made sure I didn’t eat from the street vendors too. 

So glad that you’re doing well this time round, I too lost a lot of hair this 2nd round, it’s does look thin and lank so I’ve been wearing my wig if I’m going anywhere nice but it’s still nice to have hair when I’m in the house. 

I will cold cap again on Tuesday but it was really painful last time so I’m dreading it to be honest. It’s my last EC before moving in to docetaxol, I’ve read somewhere that you only need to keep the cap on for 20 mins after this rather than the 90 mins on EC. Not sure if that’s right or not. 

 

Glad everyone else else seems to be doing well, I’ll be glad to say I’m halfway through after Tuesday though, just the thought of it makes me nauseous!!!

 

Anyway, take care everyone xxxxx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

💪💪💪🥊🥊🥊🥊well done wolvesgirl ❤️❤️No 2 big fat ✅ yehhhh😁😘💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Lisa,

so ur starting 12 weeks of Paclitaxel soon....  i thought the same as you,  you dont get a chance inbetween to recover a littlebefore you have the next one.

it is doable once your routine is in place.  I found that days 3-5 were my worst ....  fatigue, just slight nausea, headache and bone pain in knees, hips and back.   Sounds awful doesnt it but honestly once you get used to it and know what to expect each session you just kinda get on with it.

just do what suits you for your dodgy days....

i had a PICC line put in as could only use one hand for the cannulas and was getting real sore.

 

you will be surprised once you get the first couple out the way that it becomes your normal routine.

i used to have myPICC line flushed n dressing changed,  then they'd take my bloods on wednesday and my chemo on the friday.

 

let me know how you get on wont you and anything else you wanna ask just ask..

we all handle ourtreatments in different ways and se prob wont be the same as other people.

keep strong,  positive and look FORWARD and not back.

minimad xx 💖💖   (ps.  I'm Triple Negative )

 

 

 

 

 

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Good to hear that you have had your second FEC treatment, and that you are feeling OK so far - long may it continue!  I hope that everything will go really smoothly for you on this cycle.   

 

I am just back from the hospital too, after having my first review of my two EC chemo cycles with the oncologist.  I was also booked in for a breast MRI straight after the oncology appointment, but this had to be rescheduled for next Monday because the oncologist was running 70 minutes late - apparently she had been poked in the eye this morning (by her toddler, not a patient) and had spent the first part of the day in A&E.  I move on to a new chemo regime next week (docetaxel + Herceptin + Perjeta) for the final four cycles, so am a bit nervous about the side effects of this new combination. 

 

I hope that you will have a good rest of the day, and that any side effects will stay away.  I hope that all on the thread, whether having just had a treatment or preparing for the next one, are as well as possible and able to enjoy some fun things in life every day.  Each day is one more step towards the end of our chemo, and we are all getting there slowly but surely!

 

Blackcat xx

 

Member

Re: August 2019 Chemo Starters

Hello ladies

 

Hope everyone is ok and not suffering too many side effects at our differing points of treatment. I have just got home after my second FEC - ok just now but very early in terms of nausea.  Feeling positive that this cycle will be better than the last.  Still cold capping but hair seriously coming out so not sure about it’s effectiveness really. To be honest I know I have a lot less hair but not sure the casual observer would. However if it doesn’t slow down it will all be out within the week!  I don’t mind the cold cap - it’s not painful at all, just takes a long time. 

 

Looking forward to hearing your news. Xxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi ladies

 

iv had trouble trying to get on here the past couple of days. Not sure if anyone else has? Anyway back on now! Hope everyone’s ok and the Wembley trip went ok?? Im now 4 days post 2nd EC and feeling ok 🤞🏽just very tired.  Becki our treatment sounds very similar I’m having EC for 4 cycles but mines every 3 weeks.. I’m then going onto 12 weeks of Paclitaxel which I’m also worried about the change and different side effects that will occur 😫 also the fact that it’s every week seems a bit brutal! 

mini mad any info or advice you have regarding this would be amazing! And I’m so pleased your through it now 😃👍🏼 

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi BeckyDixon,

 

jumped in from June chemo thread and moticed that you're starting Paclitaxel soon.

i had 12 x weekly Paclitaxel which i finished 3 weeks ago 🤩🤩🥳🥳 so if i can offer any advice/info or tips please ask.

good luck  mini mad xx 💖💖