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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Ahh, I see, thanks Wolvesgirl 

mini mad, I’m halfway through treatment now, I’ve got round 4 of chemo next week.

I hadn’t heard of this before, I like to know what I can in case anything is relevant!!

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Re: August 2019 Chemo Starters

Hi Spottycotty

 

These drugs are used to treat osteoporosis generally but as I understand it there is evidence that they may help prevent spread of cancer to bones.  I don’t know what the criteria are for having this but it might be that you have to be post menopausal which I am (I am 61). I was also young when I became menopausal so it might be a good thing for me to have anyway.  The oncologist said to me you can have tablets or a twice yearly infusion.  He also said three years to me.  We are going to discuss it when I have finished chemo but it seems a good idea to me. Hope that helps xx

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Re: August 2019 Chemo Starters

Hi Spottycow,

 

the best thing for you is to google it or take a look on the Breast Care website.

you say you're TN,  are you having treatment now ??

mini mad xx 💖💖

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Re: August 2019 Chemo Starters

I haven’t heard of he drug you are talking about, could you tell me more please??

im TRiple negative too

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

i am having Zoledronic Acid infusions every 6 months for 2 years.

i've had one already n next one is January 2020.

i did try the tablets but they gave me horrendous heartburn,  so now having it through IV.

I think they offered it to me because of my age (69) and i've had TNBC twice in 2 years.

do whats best for you. Mini mad xx 💖💖

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Re: August 2019 Chemo Starters

Hi again Mini Mad

 

Sorry forgot to add that biphosphonates  as well are probable - another 2% benefit is worth having I think.  Don't know if anyone else is considering these?  If I do have them I would prefer an infusion every six months rather than the tablets but need to consult the dentist first anyway.  xx

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Re: August 2019 Chemo Starters

Hi Mini Mad

 

So pleased you have got plans for a lovely holiday coming up - that is something to look forward to as the days get shorter and darker.  Good news re the hair too - all signed of return to normality.

 

My treatment plan is FEC-T, three of each, so this week will be the third FEC and then onto the T.  To be honest I have struggled - I had an admission on cycle one and then really hit the grumps on cycle two to the extent that I decided I would stop chemo.  Had a long chat with the nurse who suggested I had at least the last FEC so thats what I am doing this week.  Of course, now I feel fine I can't imagine why I was so down and I really want to carry on with the whole treatment!  So, my plan is to see how I am on cycle three and then decide but I do want to make sure I give myself the best chance now so I will probably grit my teeth and get on with it.  Then onto 15 radiotherapy sessions plus boost doses so it will have had everything thrown at it.  As the whole cancer has been removed with wide margins and clear nodes I think that is as good as a position as I can get.  

 

Its been more challenging emotionally than I was ready for to be honest - I have always thought of myself as pretty robust and able to face anything but I seem to be making much heavier weather of it than you and  all the other lovely ladies on here who are inspirational with their determination to get this done.  xx

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Re: August 2019 Chemo Starters

   Hi Wolvesgirl,

 

yes i finished my chemo 5 weeks ago.... huge relief and i dont miss my hospital appts one bit 😆😆

 

think i have a little more energy now but gonna be a long haul....just booked a weeks holiday at end of November to Ferterventura for our 46th w/ann,  just gotta watch out for the sun 😉😉

 

my hair has begun to sprout !!!  Got about 1/2 inch all over, so still wearing my lvely scarves until it gets longer,  then i might go ' natural ' 

sorry,  chemo fog....  what was ur treatment plan for your TN ??

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Re: August 2019 Chemo Starters

Hi Mini Mad

 

Me!  It itches when I get hot so I haven't been to the gym or anything as I don't want people there to know about the treatment (my issue sadly) but if I go for a walk or something its bliss to take it off.  Just feel sorry for my husband who has to look at me with thin, lanky hair although he doesn't mind.  

 

How are you now as I think you have finished your chemo haven't you?  I have struggled but am determined to get through it and beat this TN thing!! xx

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Re: August 2019 Chemo Starters

Thanks Lisalou

 

The only downside I have experienced is I get a bit hot - a bit of energetic hoovering and my scalp itches a bit but it soon wears off.  I must admit by the evening its nice to get air to my head!  I have another wig which was quite a bit more expensive (I paid for one) which I don't wear so much as it is a bit OTT - I think I will take it in to get it cut as it is better quality.  Re the collar - mine is short so I haven't found the same as you.  Like you, I am not sure that anyone has really noticed and I am used to it now.  Even went out to walk the dog in windy weather and felt pretty OK!  Thanks for getting in touch xx

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Re: August 2019 Chemo Starters

Thanks Blackcat,

 

Your experiences are the same as mine.  One person in the village said that my hair looked nice last week - she is a hairdresser and I can't make up my mind if she sussed it or not!  Anyway, I don't think she would say anything.  I had tea with a friend last night who does know and she said that it makes me look slightly different but eventually after much laughter we decided it was because it was tidier than mine!!

 

The people I am meeting tonight are ex work colleagues so probably won't feel they could comment anyway.  Have a great day - term at UoY has restarted this week and I am so happy to be back at the books again!

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Re: August 2019 Chemo Starters

Thanks Spottycotty

 

Same for me really - those that do know say that the wig is exactly like my own hair as I am fortunate to have thick hair anyway.  I have two wigs - one is a bit OTT and I am not so comfortable with that one, might get it trimmed a bit I think.  I do take it off in the evening when I have showered but I couldn't go out with my extremely thinned hair!  I am hoping that the cold cap will promote quicker regrowth even though I have lost most of it and I have read in other places that people have seen their hair regrow whilst on docetaxel which I move onto soon.

 

I will let you know if anything gets said - I hope it doesn't but I will deal with it if so.  Thanks for getting in touch xx

 

You are right, I would hope that they won't comment out of sheer politeness 

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Re: August 2019 Chemo Starters

Wolvesgirl, if it’s close to how you hair was I doubt anyone will notice or they might think you’ve had a new style. No one could tell mine were wigs people just thought I’d changed my hair (did that loads with my different wigs) it’s just to us it feels like we’ve a cat sitting on our heads, but to everyone else it just looks like hair honest 😘😘💕💕✨✨Shi xx

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Re: August 2019 Chemo Starters

I also have a wig and do wear it out for special occasions.

i do find  it very hot and scratchy even though i wear a scull cap under it.

i get home,  take it straight off and oooh the bliss of scratching my head 🤪🤪😆😆

Anybody else feel the same?

mini mad xx 💖💖

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Re: August 2019 Chemo Starters

 

Hi Wolvesgirl 

 

I too wear my wig all the time when out and I’m starting to get used to it now. The only bit that’s getting on my nerves and I don’t know if anyone else is getting this is were it sits on my collar it obviously doesn’t sit like normal hair and getting on my nerves a bit. Apart from that though I don’t think those that don’t know even notice. Iv been into work a few times and Iv even had people saying how lovely my hair looks. I had it cut shorter once I knew it was going to fall out then got a wig very similar apart from the fringe. Those friends that do know said how real it looks. I’m still quite  conscious of it but getting more used to it now.

 

Hope you have a lovely night out 😘 xxx 

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Like you, I wear my wig all the time when I am out, and have got used to it as being my “hair”.  It does actually look pretty much like my own hair used to be, although the fringe is cut in a more choppy style.   Some friends/neighbours/former colleagues I have bumped into (who don’t know about my diagnosis) have said that they like my new haircut and have not asked any questions about whether I am OK or whether something has happened to my hair, so I presume that they have not guessed I am wearing a wig.  I was also at a work-related event a couple of weeks ago where nobody knew about my diagnosis (the people there were colleagues from a different office, who I only see every few months).  Nobody made any comments about my hairstyle at all, and it was nice just to be able to have an evening without any discussion about cancer/chemo etc.   I guess that it may depend on how well people know you, but I would presume that most people will not notice, or if they do, will not make any comment about your hair.

 

I hope that you enjoy your evening out!

 

Blackcat xx

 

 

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

I have still got my hair although it is quite lank now, I have been wearing my wig to go to nice places.

my friends know about my treatment so their initial reaction was suprise when they saw my wig, they insist that had they not known me previously, they wouldn’t know at all.

The thing with my wig is that it is actually better and thicker than my real hair before it shed so my family and friends can tell, strangers in the street would never know.

I nipped to work yesterday to drop hubby off and saw a colleague, he hugged me and he touched my hair whilst doing so, I felt a little awkward so I told him I was wearing a wig and he asked if I was serious and insisted he couldn’t tell.

When you’re with your friends tonight and if they do suspect your hair is a wig, you would like to think they wouldn’t say anyway???? Bit rude if they did?? It must feel like a lot of pressure on you keeping all this to yourself although I do understand why you have, sometimes it’s lovely to just talk about normal things!!!

I hope you have a great night and your worries are unfounded. Let us know how it goes.

Thinking of you xxx  

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Re: August 2019 Chemo Starters

Hi everyone

 

I meant to ask about people's reactions to wigs for those of you that wear them.  I wear mine all the time and am almost at the point of forgetting its a wig not my hair.  I do wonder whether people that don't know have noticed - no one has said anything - have any of you had anyone ask you?  I suspect people won't ask but just wondered.  I am out tonight with a couple of people I haven't told about the cancer and don't really want to - I am hoping I can get away with it as it is just nice to be with people who don't know and therefore its not the "elephant in the room".  xx

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Re: August 2019 Chemo Starters

Spottycotty, on the t, it’s softer on veins and everyone is different on t, some are still botty blocked and others need Imodium and some were just fine, there is no way of knowing ❤️But know it will be fine 👍😁 for bone pain this is the Epsom salt bath time, it’ll help a lot. You can get jaw pain from it too but as always anything you are unsure of please phone your unit ❤️💕💕✨✨Shi xx

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Re: August 2019 Chemo Starters

Sorry that should have been yey to you, not yet 🙄text gremlins out and about tonight 🙄💕💕✨✨Shi xx

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Re: August 2019 Chemo Starters

Wolves girl ❤️Third one already 💪💪💪yet to you 👍👍 your arm will ease off on the t, it’s softer on veins. Get them to soak your arm in warm water in sharps bucket and get them to put heat pad on your arm while they do the fec it will help 👍💕💕✨✨Shi xx

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Re: August 2019 Chemo Starters

Hi everyone 

 

Good to hear everyone is pretty well and managing side effects. I am feeling fine - third FEC on Thursday so doing a few things and seeing people before the dreaded chemo coma hits at the weekend. Am determined not to let it get to me this time so I can continue as planned with the three docetaxels afterwards. Really need to get a grip so have things to keep me entertained during the down days. It’s interesting hearing about the different side effects that you are reporting and I have to say that not being nauseous will be a bonus!  I still have a sore arm but it’s bearable and I have about 15% of my hair which, I am sure, is growing!  Weird. 

 

Spottycotty - hope you have a great birthday and go somewhere lovely. 

 

Take me care all xxx

 

 

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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

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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

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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

 

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Re: August 2019 Chemo Starters

How have you been Lisaloo??

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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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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

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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

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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

 

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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

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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

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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

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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

 

 

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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??

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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

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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

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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

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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

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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