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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

It’s an interesting question about how things work in different chemo units.  In mine, we have to fill in a detailed form during each cycle (it’s basically a spreadsheet) which lists all possible side effects - we have to state whether we have had them or not, when we have had them, how much they bothered us and what action was taken.   We also have to put on the form whether we need any other support (e.g. help at home, counselling etc), and there is a section to fill in about how we have been feeling.  We have to submit this form on the morning of the day before treatment when we get our bloods done.  The form is reviewed, together with our blood results, on the day before treatment by the chemo nurse we are going to see the next day, and she/he gives us a ring on the afternoon of the day before the treatment if there is something that needs to be discussed that day (e.g. if there are any blood results in the red zone).  If all is looking fine for the treatment and on the form, we don’t get a call the day before, but spend the first 20 minutes of the treatment session doing a review of the form and the blood results (and anything else we want to discuss) with the chemo nurse.  This is working quite well for me, as it seems to be time-effective and when I arrive for each treatment I feel that the nurse is already well informed about anything I want to discuss.  For example, if you have noted on the form that you had a certain side effect and need additional help with it, the nurse will already have discussed this with the pharmacist and/or oncologist and the meds will be brought to you at the end of the treatment.  So far I am lucky enough not to have had any significant issues with side effects and my blood results up to now have all been fine, but I know if they are not then I will get a call the day before treatment.  If I don’t get the call, i am happy because I know that everything seems to be on target for the following day. 

 

I hope that everyone on the thread is doing well!

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone

 

Between each cycle I go into the hospital to see, alternately, either the chemo nurses ("nurse review") or someone in the the Chemo Consultant's team.  They have tried to make the appointments on the same day as I go in to give the blood samples prior to each treatment, but that has caused a couple of difficulties as the appointments have been the day before treatment (nurses/consultant on Wednesday then treatment on Thursday).  So if the strength of the drugs need to be altered, or there's a problem with my blood, it's all a panic to get it sorted for the next day.  As I've had a couple of issues recently, they've now changed the blood samples to two days before... which don't match up with the dates of the clinics - so my next 'nurse review' will be over the phone.  During the reviews, I'm just asked about what side effects I've been having and am given advice on how to manage them.  I agree, it's really good to keep in touch - the only way I think my experience would be improved is if it was the same person (or couple of people) that reviewed my progress each time... although I do understand that would probably be too difficult to manage from the hospital's viewpoint.  xx

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Re: August 2019 Chemo Starters

Hi everyone

 

Me again.  I was just wondering about how units differ in their processes and one of the things I thought about was how often people attend outpatient clinics.  Our CNS team either see or phone you between every cycle which I think is excellent - do you all have that?  Personally I prefer a call as I feel the less time I spend on the hospital site the better but I am also grateful that they are so good at keeping in touch.  Do you have any preference?  xx

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Re: August 2019 Chemo Starters

Dear Julie, Becky and everyone

 

Julie - So sorry to hear that you had a wasted journey and wasted steroids last week - I can imagine how tricky it is having to rearrange things, like you I pack things into the third week.  I am in week two of this cycle now - 12 days post chemo so hopefully coming out of the neutropenic phase now.  Must admit, did go to the Harvest Lunch in the village yesterday but didnt mingle too much and was not aware of anyone with a streaming cold!  I am now looking forward to a few days of being "me" before my first dose of Docetaxel which I am a bit nervous about!   I agree re the injections and timings - its worth trying different times.  They do make me feel a bit "off" apart from the pain which has been minimal and if it happens it does right at the end of the seven days.  I have actually brought mine forward from 1830 to 1730 and I think that is better but its probably not really that big an adjustment.  Definitely best to have in the evening I think - thats what the nurses told me.

 

Becky - so pleased your first taxane cycle started well - how is it going now that you have finished the steroids?  I hate taking them but absolutely understand why we need the higher dose (thanks Blackcat) so am not looking forward to the higher dose.  Re the red cheeks - I am going to Boots tomorrow to see the Macmillan Beauty person (on the No7 counter apparently) to see what they can recommend as I don't think I will be on a LGFB course anytime soon.  Trying to be proactive here now I am feeling better!

 

Hope everyone else is good and had a lovely weekend.  Its getting very autumnal here now - lots of leaves off the trees and lots and lots of mud on our village lane thanks to the potato fields being harvested.  Yuck!  xx

 

 

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Re: August 2019 Chemo Starters

Many thanks, Blackcat.

 

My chemo journey - Herceptin, Perjeta and Docetaxel + Carboplatin - sounds very similar to yours, except that I've been on those 4 drugs since the beginning (will have 6 cycles in total).  I was very "excited" (!!) about going last Thursday for my fourth treatment of the same, but when I arrived at the hospital - all psyched up and ready - they told me I couldn't have it as my platelets were still too low.  I had to have a blood transfusion after the 3rd treatment for the same reason, but this time they have delayed my next one for a week instead.  This is obviously frustrating as my 5th and 6th cycles have also had to be delayed and I'm now having to re-arrange things I've set up for my 'good' week each cycle.  I'm finding I really only get the final week each time when I feel capable of going out with friends, but perhaps that's because my body isn't coping too well with making new platelets.  I can't wait to get past the 4th treatment as feel I'll then be on the downward run.

 

I don't know if it's any help, but I've experimented with the timings for the filgrastim injections (I've been having those throughout too) and found the best time for me is between 6pm and 7pm because I can then basically sit down all evening and then go to bed, so the bone aches bother me less.  I've only needed pain relief (simple paracetamol) once during the whole 3 cycles so far.

 

I've also been having the higher dose of steroids throughout - 4 tablets twice daily for the day before, day of chemo, and day after... and then reduced to 2 tablets twice daily for the two days after that.  It seems to me the worst side effects kick in once the steroids are out of my system.  I have had the red cheeks each time... which was particularly annoying when my last treatment was postponed as I'd already taken the steroids for nothing!

 

I've had no nail problems whatsoever (so far).  My nails still seem strong, although I am moisturising them often... just with basic Nivea cream.  My taste issues have been exactly the same as yours... everything tasting like cardboard for 3-4 days doesn't help with trying to eat, does it?!!

 

The nurses have said all the drugs have a cumulative effect, and I must admit I've been getting more tired (and with worse digestive issues) each time and not really getting back to 'normal' between treatments.  I can't imagine what it's going to be like after the 6th and final one - but it will be such a relief to have the chemo part of the treatment over that should raise our spirits!

 

Good luck everyone, and hopefully I'll be able to report I've had my fourth treatment next time I'm on here.  Thank you all for sharing your experiences - it really does help.  Julie x

 

 

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Re: August 2019 Chemo Starters


Hi All

 

thank you mini mad once again for your reassurance (feel like I’m a broke record) and thank you Becki for letting us know how you got on with your first pax. Glad to here it’s so far so good for you 🤞🏽 I do hope that continues for you. Let me know how your getting on as the week goes on. Hope everyone has a nice weekend. 

lisa xxx

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Re: August 2019 Chemo Starters

Thanks so much for sharing your experiences mini mad!

 

So my first weekly pax was yesterday and, boy, was I nervous... got there and in took at least 3 nurses and 5 stabs to get into my very tender and swollen new port, and I was beginning to fear another week of delays but we got in eventually (yowch!)

 

But so far a TOTALLY different ball game than EC (which was a real struggle for me), I got a solid night of sleep after and awoke today feeling a bit sluggish but pretty ‘normal’ (normal at the moment is slow and tired but I wasn’t crazy worse than usual) and NO NAUSEA!!!! I was up with the kids for breakfast (unheard of in the first week post EC), did some cleaning whilst they were at dance class and even took them to the cinema this afternoon. My appetite has been huge too! I’m pretty exhausted and flat out on the sofa now with a pile of magazines and don’t plan to move - thank goodness an amazing friend of mine has my girls for a sleepover tonight - but I still feel like ‘me’ (I lost that post EC for some of the days). I suspect things might be worse and the tiredness will really hit once the steroids wear off, and I know all bodies are different, but I’m taking today as a gift, and just wanted to add some hope that a change in meds might not be as bad as the last lot for us all! (and crumbs, EC was a tough ride).

 

Happy weekends all! Xxx

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Re: August 2019 Chemo Starters

Hi Lisa,

 

of course i had days when i felt better....wouldnt call it normal.    I found at the beginning that days 3-5 where my worst but i believe that as my body kinda got used to the chemo, 

that it became less.   So no, hopefully you wont feel wrecked for those 12 weeks.

i found going out for a walk every day with my dog did help.  Even if it was a slow plod !! 🚶‍♀️🚶‍♀️.    The fatigue/tiredness is bad,  at least for me...even now 7 weeks after chemo.

 

on the plus side my hair,  eyebrows and eyelashes are making a return...yay.... something so simple can raise ones spirit 💖💖   Dont forget our bodes are all different in the way we handle the chemo so just wait and see.

stay in touch.  Mini mad xx 💖💖

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Re: August 2019 Chemo Starters


hi mini mad 

 

Did you find you had any days when you felt “normal” I think my main concern is not having the couple of weeks of feeling ok in between. Am I going to be wiped out for 12 whole weeks? I’m not expecting it to be a walk in the park Iv just enjoyed having these times of feeling myself in between my treatments.

 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Blackcat and everyone

 

Thanks so much for the detailed information Blackcat - its really helpful.  I think the advice about the ibuprofen/paracetamol is good - so far on this cycle I haven't had any bone pain with the GCSF but today is day 5 of the injections so it might start soon as it seems to be towards the end it happens.  On my first cycle the pain was startling to be honest and I was quite glad that it happened when I was in hospital as it could have been a bit worrying, but they assured me it was completely normal.  Last time not so bad so I am thinking maybe my neutrophils did not drop as low so lets see this time.  If you can manage without stronger painkillers it is better - anything with codeine in can cause bowel issues and lead to feeling dizzy and sick as my husband has just discovered!

 

I will try Evonail - my nails are not particularly strong tbh but I want to try and protect them if I can as finally having given up nursing I am able to grow them a bit which is a great treat!  

 

I get what you say about the increased steroids - obviously a standard dose as I have to start 8mg twice a day before the next cycle.  I get the red face with the lower dose so I will probably look like a tomato with the bigger one!!  I believe that the chances of a reaction during administration is higher with taxane so it makes sense.  

 

I was very envious of you doing the LGFB course - it sounds fantastic.  There is a waiting list for LGFB in our area and I am on it - a friend of mine who had chemo about 5 years ago for BC got on it just as she was finishing so I am not hopeful of a place anytime soon but I am awaiting a call!

 

Taste - that sounds interesting.  I have not really experienced too many taste issues this time with the FEC but the nausea is a bit more long lasting but only on a very low level.  I have not taken antiemetics since Monday to prevent constipation which in turn causes nausea leading to the cycle continuing.  I do fancy certain foods though - strong cheddar being one of them - and cheese crackers.  

 

It sounds like you have managed the side effects and the chemo journey really well and I am so pleased for you.  You are right, it has gone quickly - for me, getting number 4 done will be huge as I will be over the "hump" and on the downward slope to the end.  Then just radiotherapy to contend with which at the moment is not even on my radar.  

 

Have a good week and keep safe. xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl, Spottycotty and everyone,

 

I’ve just got back from my second treatment with Herceptin, Perjeta and Docetaxel, which took about 4 four hours because there needs to be a saline flush between each drug infusion, but was much quicker than the marathon session of the initial treatment (9 hours the first day, 4 the next day) when you need to be monitored for adverse reactions for several hours.  All went well during the treatment - as in the first cycle, I felt nothing at all during the treatment.  The nurses gave me good advice about dealing with the bone pain, which can be caused by Docetaxel but is accentuated by the Zarzio (filgrastim) injections and therefore tends to happen mostly during that part of the cycle.  They told me to start taking paracetamol, alternating with ibuprofen, whenever any slight bone pain started after the injections, and to take it in anticipation of bone pain starting on Day 5 (when during the last cycle I was hit by severe pain during the night, having tried to ride out some lesser bone pain during the day).  They think that I should be able to manage the pain without being prescribed strong prescription painkillers, as I only really had bad pain twice, but I can ring up for stronger painkillers if needed.

 

The increased dose of steroids around the time of the Docetaxel treatment is apparently to counter possible adverse effects, and I have found that the high dosage (I have to take 4 tablets twice daily on the day before treatment, day of treatment and day after) has given me a few side effects (bright red burning cheeks and a slight rash on the chest, the inability to sleep/feeling restless, and feeling very hungry).  I did not get these with the lower steroid dose when on EC, but apparently they are all quite standard with the higher dose.  Indeed, at the LGFB course on Monday, one lady was on the day before treatment and had exactly the same red “steroid cheeks” as I have today.  My chemo nurse said today that the dose is very high, but is vital with Docetaxel (so much so that the treatment cannot be given if the patient forgets to take the pre-treatment prescribed dose).  So I guess that whatever adverse effects the steroids aim to prevent could be worse than those from the high dose.  

 

I have had taste issues with the Docetaxel on the first cycle - three wonderful days (Day 1-3) when on steroids with all tastebuds normal and functioning, but then a few days with weird/blunted tastebuds (bitter/metallic taste) followed by a couple of days with almost no sense of taste or smell at all, and when I didn’t have much interest in eating (although was not nauseous).  Thankfully the third week of the cycle was OK, as I could taste and enjoy most things again.  

 

Docetaxel definitely can cause nail problems, as a gentleman in my treatment room today showed  me how it had made several of his nails fall off (but he has a different type of cancer, so perhaps it is not a direct comparison).  I having been using Evonail since the start of chemo, and have no nail problems so far (in fact my nails are growing fast and are strong).  I have also had no mouth problems at all.  One benefit of the Docetaxel is that it has never given me the feeling of a woozy head or headache, and for some reason it has not made me tired (although I know it does in many people).  So these have been good things.  The digestive unpredictability has for me probably been the most inconvenient side effect, but the nurse today advised me to take the loperamide more regularly as a preventative measure, so I will do that.  I think I have learnt quite a bit from the first cycle, and will act on it during this one.

 

I hope that all moving on to a taxol regime will get on as well as possible with it.  It is scary adapting to new side effects, but we are all becoming more experienced at the chemo rollercoaster and will can do it!  It is amazing how quickly time is passing - I now just have two cycles to go, and it seems only a moment ago I was terrified at the thought of starting chemo.

 

Take care everyone, and I hope that you all have a good rest of the week.

 

Blackcat xx

 

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Re: August 2019 Chemo Starters

Hey Lisa,

 

yeh i think we have been in touch before.

if you want to ask anything please do.

i've finished my chemo now. 👍👍

mini mad xx 💖💖

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Re: August 2019 Chemo Starters


Hi mini mad 

 

Thank you! 😘 I think you’ve offered me some reassurance before. 
I think my main concerns are 1. the frequency in which it’s given, Iv been having EC every 3 weeks and I’m finding that for a week of that I’m very fuzzy headed and tired but then I have 2 weeks where I’m feeling “normal”. I’m worried about not having that break from it and spending a whole 12 weeks wiped out. 2. A whole new set of side effects to deal with 😳 I’m sure I’ll think of other things to pick your brains about to 😆🙈 

 

thank you so much for offering your advice 

 

Lisa xxx

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Re: August 2019 Chemo Starters

I had paclitaxel once a week for 12 weeks.

i finished my treatment 7 weeks ago.

if i can offer any advice pls just ask 💖

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Re: August 2019 Chemo Starters


Hi Becki 

 

lovely to hear from you. Sorry to hear you’ve had a few problems which have delayed your treatment. I’v got my last EC on Friday 18th then I’m moving onto Paclitaxel like you. Please let me know how you get on with it as I’m getting quite anxious about starting a different type of chemo. Feels like your starting all over again doesn’t it?! I’m hoping like you that its correct about the EC being more harsh. Are you having it weekly? Doesn’t give you much time to recover in between 😳   

Lisa xxx

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Re: August 2019 Chemo Starters

Hi All,

 

Sorry haven't been on here for a while, but good to read through all your updates and it seems we're all soldiering on! I have had a bit of a hiccup with developing blood clots in my picc line after my fourth EC - gah! So it's had to be whipped out, I'm on lovely blood thinning injections for three months (blinking painful but at least none of the horror side effects of the filgastrim!) and starting paclitaxel was delayed for two weeks until I could get a port fitted (my other arm is out because of ANC and they're worried about cannulating the picc line arm after blood clots). Anyhoo, that's going in tomorrow and weekly pax starts on Friday...

 

I had really mixed feelings about the two week break, as it pushes my finish point after Christmas, but also I was SO knocked out by EC 4 it has been good to recover a little. It's now 4 weeks since any chemo drugs and I'm feeling pretty good, managed some work and even getting to some yoga classes, but BOY am I exhausted, just made me think about after chemo is done there's a whole lot of recovery time in getting energy back to come...

 

Anyone else started weekly pax yet? I'm REALLY nervous about Friday - I'm hoping that it's gentler, which is the general guidance I've been given, but I've been doing a good job at side effects bingo so far, so fear I might keep this up and get everything going with pax! Saw the oncology nurse consultant today and she was quite confident I'd be able to work a little around pax, but it's hard to know, last EC had me in the fog for 8 days in the end, so I'm hoping for the best but preparing for the worst! Doing a massive shop and meal plan for the week now to try and get everything in place for when I go under...

 

Big love to you all and keep on keeping on! 

Becky x

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Re: August 2019 Chemo Starters

Hi everyone

Sounds like things are going OK for our little group - I am now day 6 post FEC - still nauseous but not taking antiemetics as I don't want the constipation that goes with them - managing with fluids and ginger biscuits!  Although I still feel rough I am much more positive than I was which has helped and reading your posts really helps with that so thank you all.

 

Blackcat - sounds like your first cycle of the new regime has gone well - I really hope that continues from this week with your next dose and you continue not to experience side effects to a great degree.  I don't know if the bone pain is the drugs or the GCSF - that can be pretty acute - but paracetamol is a good analgesic for it although I accept what you say about being unable to anticipate it during the night.  So very pleased you have been able to get out and about more - I am really hoping that will be the case for me next time.  I am so sad about the reduction in my fitness since this started - the gym is a distant memory - but I can only look forward to getting it all back again from the New Year.  

 

Spottycotty - well done!  No vomiting night one!  Again, really pleased that is the case and hope it continues.  How are you and Blackcat finding the increased dose of steroids (if that is what you are having - I have been given double the dose to start the day before)?  I can't say I like taking them but they seem to work re side effects so they are a necessary evil I think but it makes me wonder about the need for doubling the dose - what are they anticipating???  Fingers crossed for a good recovery.  Sleep is good - give into it - its your body telling you it needs it.

 

Are either of you experiencing taste issues?  I believe that can be more of a problem with Docetaxol as can nail issues - have you painted yours?

 

Lisalou - glad you are OK too and have had time out last weekend.  Its our harvest lunch this weekend and as the token village veggie I always have to make a quiche (for me and my husband basically).  Its always a nice occasion and I am really looking forward to it. 

 

Keep well everyone, love xxx

 

 

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Re: August 2019 Chemo Starters

Morning everyone,

 

Well I have had the first dose of docetaxol yesterday and I can’t believe the difference!! 

Ive got through the night without having my head down the freshly bleached toilet or sick bowl!!! 👏👏👏 slept right through till 4.30 so I’m feeling well pleased with myself 🤣

I felt really nauseous at the hospital but I think it’s the smells and the anticipation etc turning my stomach more than this lot of meds.

I came home, washed the conditioner out of my hair from the cold cap and got settled on the sofa. 

I’ve felt really tired and slept loads but I can take that, I know it’s early days and there may be a monster lurking round the corner (days 5-9 Blackcat??) but for the time being, I’m enjoying feeling normal ish 👍👍

 

Really hope everyone is getting on ok too..

 

ps, the nurse who hurt my arm refused to see me again 😆😆 ... bloody fine by me!!!!

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Re: August 2019 Chemo Starters


Hello ladies. 

Sorry for late reply wolvesgirl. I have indeed been enjoying these chemo and fuzzy head free days! im 11 days post EC now and feeling pretty good. 
Been trying to get out walking as much as I can with my dog and meeting up with friends. 
blackcat I’m so glad you managed to get onto the look good feel better workshop, I really can’t recommend it enough to all you other ladies. 
Hope everyone’s ok? 

big hugs to everyone 

Lisa xxx

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Re: August 2019 Chemo Starters

Hiya,

 

Wolvesgirl, well done done for trying to get out and about, it’s so difficult to do things when you have that woozy head isn’t it, I really hated feeling like that... anyway, last one of those so done so onwards and upwards.

 

Blackcat, the workshop sounds really good, I’ll have to book in when I know when my good days are.

Im having my first docetaxol tomorrow 😩 feel like I’m starting over and I’m a bit unnerved as I don’t know what to expect or what days I’ll be well. 

Ive been keeping track of my temperature this week as it’s usually low (35.5 ish) so I thought I’d keep track then I’ll notice if it drops more.

 

Anyway, we’ve had a lovely weekend away to prepare ourselves for the this week, my brother in law is getting married at Gretna Green on Saturday so I’ll be missing that, daren’t sit in the car for that long after hearing loose stool stories like yours Blackcat!!! Imagine!!!

 

Anyway, I hope everyone is as well as can be xxxxxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

I’m sorry to hear that you had a bad night with nausea, and I hope that you are feeling better now.  I think that you are right to be up and doing things, as I found it always helps me too when I am on the worst days of the treatment cycle - every normal task I complete is like a small victory!

 

I think that there are pros and cons to the new drugs (Docetaxel/Herceptin/Perjeta) in comparison to the EC.  On the plus side, it has been good not to have the nausea and the woozy head, but on the minus side the bone pain has been a challenge at times (particularly because twice it kicked in during the night and so I hadn’t taken any medication to anticipate it).  However, it was only really an issue on Days 5-9.  The Docetaxel has also given me some digestive issues - not actual diarrhoea (which my chemo nurse said was really common), but certainly a speeded up and unpredictable digestive tract, which is inconvenient when you are out.  On the new drugs I have not felt tired, and I have just had an excellent few days when I have been out and about doing lots of things (walking in the countryside, having meals out, and just doing normal tasks like taking my cats for the vets for their annual check up/jabs).  However tomorrow I am back at the hospital for bloods in preparation for treatment no. 4 on Wednesday, so I will be back at the start of the cycle (and the SEs) soon.  This time I am going to ask for some better painkillers for the bone pain, I think, and also for advice about whether to take painkillers in anticipation of it starting.

 

I have just come back from my Look Good, Feel Better workshop at the hospital, and it was excellent!  We were given fabulous goody bags containing about £250 worth of big name cosmetics, skin care products and fragrances, and were shown how to apply them to compensate for some of the issues we face during chemo (e.g. steriod flush on the cheeks, loss of eyebrows, dehydrated skin etc).  There were 7 other ladies there, 6 of whom are also going through chemo for breast cancer, and it was a great opportunity to compare experiences and share tips.  We all came out looking much more glamorous than when we went in, and feeling much better too, so the workshop definitely lived up to its name.  It has also come just at the right moment for me - I was dreading the steroid redness/heat/itchiness on the cheeks which I got on the first Docetaxel cycle (and which I will probably get tomorrow when I take my first dose for the next cycle), but now I have a lovely green (!!) skin treatment which miraculously makes the redness disappear.  My eyebrows have also been departing at an alarming rate, but today I was given a product to draw them in, and shown how to do it properly without it looking as if caterpillars have attached themselves to my forehead.  So if anyone get the chance to sign up for a LGFB session, I would really recommend it.   

 

I hope that everyone is as well as possible, and send a virtual hug to all on the thread.

 

Blackcat xx

 

 

 

 

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Re: August 2019 Chemo Starters

Hi Lisalou and everyone 

 

How are you?  Lisalou - hope you enjoyed Downton Abbey with your daughter - I am hoping the DVD will be out for Christmas and it will be our film to watch Christmas afternoon.  Sounds like its the right kind of feel good factor!  

 

I am OK - day 5 which seems to be my worst - had a bad night with nausea but managed to get it under control and get some sleep though feel a bit spaced out today.  However, positive thinking is the way forward so I am up and about and getting on with things rather than moping about like I did last cycle.

 

Blackcat - how are you getting on with the new drugs?  Better or worse than the EC?  Take care all xxx

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Re: August 2019 Chemo Starters

 

Hi Wolvesgirl 

 

Hope your feeling ok after your latest treatment?! 

I’m slowly feeling like I’m back in the land of the living (day7) stomachs a bit tender today though. 

Hoping to get out tonight to watch downtown abbey with my daughter so just having a chilled out day.

 

Hope everyone’s ok.

xxx 

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Re: August 2019 Chemo Starters

Hi everyone,

 

So, third and final FEC administered today and now doing it worst (I hope) to any random cancer cells that might be floating around.  Determined to keep positive and crack on through the Docetaxil - I am assured that nausea not so bad with it which is a massive bonus. Also only 20 mins of cold cap after treatment compared to 1.5 hours with FEC.  

 

Hope you are all well at your various points of treatment and keeping dry in this weather. We live close to the Severn (not at risk of flooding though) and it’s very high at the moment!  xxx

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Re: August 2019 Chemo Starters

Hi all

Jencat - it sounds like we are having similar treatments (although I'm Triple Positive).  I've been having Zoledronic acid with chemo every 6 weeks (so every second chemo cycle) and will carry on for 3 years - along with Herceptin and ptzumamab.  I'm 59 and post-menopausal.

 

Spottycotty - I think you're probably right about it being more appropriate for post-menopausal women.  You've obviously been doing some research, but I found this useful (although I can't see that it mentions who it's suitable for - so still may be worth mentioning to your docs).  

https://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/bispho...

 

Julie x

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Re: August 2019 Chemo Starters

 

Morning ladies 

 

Wolvesgirl glad your meal out went ok I do think it’s more us that feel conscious of it rather than other people even realising we have one on. Glad your feeling more positive too! I’m 5 days post EC now and feeling ok just very tired. I am finding that these first few days after chemo I feel a bit down and less positive then as I start feeling more myself I get my mojo back and feel very upbeat and positive again 💪🏽.

I too am TN. Everyone’s treatment plans are a bit different aren’t they. I haven’t had surgery yet. I was offered to have it before chemo but I said whatever they thought was best and I think they thought chemo first to blast as much of it away as possible.

its a lovely day here today so going to drag myself out for a walk. 

 

Lisa xxx

 

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Re: August 2019 Chemo Starters

Morning Wolvegirl, pleased to read that you're feeling better today x

Re wigs, I think it's often us feeling self-conscious wearing them at first, but actually other people can't tell we're wearing them. I remember a neighbour commented on my lovely haircut when I wore mine and she didn't even know I'd got bc so had no idea that I'd be wearing a wig x

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Re: August 2019 Chemo Starters

Hi Spottycotty,

I think Zoldronic Acid is only for post menopausal women, so probably not suitable for you.

No, I haven't been having chemo for two years, I think I must have worded my message incorrectly! I had Z A alongside my chemo which finished in March '18, but I have to go back to the chemo unit every 6mths for an infusion of Z A until next Summer x

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Re: August 2019 Chemo Starters

Hi Spottycotty and everyone

 

I just wanted to check I had told you the right thing about the biphosphonates so I checked the info leaflets on here and Cancer Research UK.  Both confirm its used in post menopausal women which makes sense I guess.  

 

Thanks to all for support re the wig and my supper with friends I haven't seen for a while last night.  Both said how nice my hair looked and asked what I had done to it.  Rather than coming clean, I mumbled something about covering up the slowly emerging grey with highlights!  If they suspected anything they kept it to themselves.

 

Off for bloods today prior to last FEC tomorrow.  Feeling very positive about it all today which is good after how down in the dumps I was last time.  Think I am back to my normal self and am determined to keep it that way.  Take care all xxxx

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Re: August 2019 Chemo Starters

Hi Jencat,

 

im 45 and pre menopausal so by what I’m reading I don’t think it will be relevant to me?

 

Have you been having chemo for 2 years?? 😨

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Re: August 2019 Chemo Starters

Hi Spottycotty, I'm also TN. I started having Zoldronic Acid whilst having chemo, every other one and then for 3 years afterwards. I think you have to be post menopausal to be able to have them. (I'm 60 now and 58 when I started chemo) I'm not sure how old you are, but if this applies to you it might be worth talking to your onc about it x

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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