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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

 

Thank you Anna 

 

yeah Iv had a few aches and pains. No sickness 🤞🏽 Probably feeling more tired then usual but like you said once I’m doing stuff it tends to pass. Iv Still had my periods since starting chemo in August but this month it hasn’t appeared yet and it should Of.. could just be a bit late so we’ll see. Everyone’s experiences on chemo are so different aren’t they. One of the chemo nurses said that some people walk through it and others really struggle. 
i hope the side affects for you are minimum. 
Lisa xxx

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Re: August 2019 Chemo Starters

Hi 


@lisaloo79 wrote:

 

Hi Annagabanna

 

No need to apologise! We’re all here to help each other. Iv had mine the other way around. So Iv had 4 cycles of EC and just had cycle 2 of paclitaxel yesterday. 
I don’t know how often your having your Ec? I had mine every 3 weeks. I found that I had a week we’re I just didn’t feel myself then 2 weeks of feeling ok. I was pretty lucky in that I didn’t really suffer with sickness and still haven’t so far 🤞🏽 Just drinking  lots of liquids and trying to make sure I eat properly. I found in the first week after EC I had a bit of a fuzzy headed feeling which I’m not having so far with the paclitaxel.
How have you found the Paclitaxel? 12 weeks seems such a long time. Has it gone quick for you? I also still have surgery to have after chemo. 

Lisa xxx


Hi @lisaloo79 with weekly Paclitaxel I seem to have different sideeffects every week but manageable once I.e. joint/muscular cramps but is controlled by pain relief I normally take paracetamol first Day 3 before joint pains starts to show it’s ugly head. I barely take antisickness at home tbh so far maximum of 7 since week 1.  I am now on chemopause so hot flushes aren’t fun🙈 But I still do yoga and walk dogs to help my WBC count. Cumulative fatigue is a pain but once you manage to get yourself up and crack on withstuff class it’s as winning. I also have surgery after lumpectomy if my gene test comes out not BRCA. then rads ❤️ You’re the second person this week on EC that I spoke too who said it didn’t bother them. 
P.S. with Paclitaxel keep an eye on tingling of toes and fingers and always let your nurse know. I had a day of it last week on 3 fingers but it went so they were ok on the dose. Xx Anna


@lisaloo79 wrote:

 

Hi Annagabanna

 

No need to apologise! We’re all here to help each other. Iv had mine the other way around. So Iv had 4 cycles of EC and just had cycle 2 of paclitaxel yesterday. 
I don’t know how often your having your Ec? I had mine every 3 weeks. I found that I had a week we’re I just didn’t feel myself then 2 weeks of feeling ok. I was pretty lucky in that I didn’t really suffer with sickness and still haven’t so far 🤞🏽 Just drinking  lots of liquids and trying to make sure I eat properly. I found in the first week after EC I had a bit of a fuzzy headed feeling which I’m not having so far with the paclitaxel.
How have you found the Paclitaxel? 12 weeks seems such a long time. Has it gone quick for you? I also still have surgery to have after chemo. 

Lisa xxx


 

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Re: August 2019 Chemo Starters

 

Hi Annagabanna

 

No need to apologise! We’re all here to help each other. Iv had mine the other way around. So Iv had 4 cycles of EC and just had cycle 2 of paclitaxel yesterday. 
I don’t know how often your having your Ec? I had mine every 3 weeks. I found that I had a week we’re I just didn’t feel myself then 2 weeks of feeling ok. I was pretty lucky in that I didn’t really suffer with sickness and still haven’t so far 🤞🏽 Just drinking  lots of liquids and trying to make sure I eat properly. I found in the first week after EC I had a bit of a fuzzy headed feeling which I’m not having so far with the paclitaxel.
How have you found the Paclitaxel? 12 weeks seems such a long time. Has it gone quick for you? I also still have surgery to have after chemo. 

Lisa xxx

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Re: August 2019 Chemo Starters

From September 2019 group Like what Shi said I admire how everyone is so positive here ❤️ @lisaloo79 also TNBC diagnosed 21st of August. Approaching week 10 of Paclitaxel and last cycle of Carboplatin ❤️ I plan to go back to work after the last cycle of EC before. Surgery but my Oncologist seems to be unsure it’s poss. I’m a scrub nurse but my work will put me on admin duties.  I am dreading the EC which I start on December😓any tips? Sorry for hijacking your thread🙈


@lisaloo79 wrote:


Thank you Shi 😘😘 and Spottycotty I Hope you enjoy your party and that your not to bad after your final one on Tuesday! 
I too haven’t had any alcohol either. I’m sure it will taste all the better for not having any for so long!  

take care everyone and I hope you all have a lovely weekend. Lisa xxx


 

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Re: August 2019 Chemo Starters


Thank you Shi 😘😘 and Spottycotty I Hope you enjoy your party and that your not to bad after your final one on Tuesday! 
I too haven’t had any alcohol either. I’m sure it will taste all the better for not having any for so long!  

take care everyone and I hope you all have a lovely weekend. Lisa xxx

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Re: August 2019 Chemo Starters

Look after yourself Lisa.

 

We are off to a party this weekend, it’s my last one on Tuesday, dreading it but will be glad when it’s done, I’m also looking forward to having a glass of wine when recovered, I’ve not had a drop of alcohol since June!! 

Have a good weekend everyone xxx

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Re: August 2019 Chemo Starters

💪💪💪🥊🥊💪💪💪👍👍👍brilliant beautiful aug thread. Keep focused you glorious people ❤️❤️ Do you know how fantastic you all are? Because you are, when you look in the mirror tell yourself how fabulous you are ❤️❤️ 💕💕Shi xx

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Re: August 2019 Chemo Starters

 

hi Wolves girl.

 

I think it’s only natural to have downers I get days like that too.. we are all doing so well though and although our plans are very different and we’re at different stages we are all getting there. I hope your doing ok after number 5. Iv had my second Paclitaxel today. I came home and had to have a snooze as I felt so tired... still do now so I think it’ll be an early night tonight for me. 

big hugs to all xxx

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Re: August 2019 Chemo Starters

Hi Lisa

That is such a positive way to look at it - Christmas is a useful focal point for us in our group I think - over half way is a massive point in the journey.  I had number five of six yesterday and am thinking that this time in three weeks all will be complete (fingers crossed).  I will be finished before the Strictly final!  I had a bit of a downer last cycle but have a plan in place to control the physical symptoms which impacts on the psychological when all I can think about is having cancer and the worst case scenario.  So, they gave me Amend this time which they don't usually with Docetaxel and I told the chemo nurse my plan for preventing nausea and heartburn which she approved of.  So, fingers crossed!  Have a lovely weekend xxx

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Re: August 2019 Chemo Starters

 

Hello wolves girl. 

Yes it’s number 2 tomorrow. I blinked and that’s a week gone already!.. Just taking each week at a time. By the time Christmas is here I’ll be over half way 👍🏼 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi everyone

Great to hear all the news and thanks for the info re the flu jabs.  I went and had mine today but forgot to ask about the pneumococcal and she didn't mention it.  Still, happy to have had this one which I am sure will do the trick.  I know Australia had a bad flu season which normally means we will so its worth doing.

 

Blackcat - I am told by the chemo nurses that the mind does rather block out the more unpleasant days in the same way that people forget what being in labour is like until the next time!  Clever old thing, the human body.  So well done on nearly getting to the end - you were our advance party in all this weren't you?  Do you think you will have surgery before Christmas?  I am sure that the worst will be over after your last chemo and you will sail through the surgery.  Are you having a lumpectomy or a mastectomy?

 

Julie - I agree, surgery is scary but not as bad as chemo to me either - this has to have been the most challenging thing I have done in my life and I genuinely could not have done it without this forum.  I  have had my surgery but to be honest it was a doddle compared to this and I am hoping that the same can be said of radiotherapy.  You have been through it haven't you with the need for transfusions - I bet you can't wait until the 28th for the last cycle.  I understand re the flu jab if you have never had it - I have for the last few years as there is significant pressure to have it if you work in the NHS (its incentivised for Trusts) but I have also had flu three times and don't want it again so its each to their own I think.

 

Spottycotty - Your scars sound like mine, I can hardly see the one on my boob (its on the bottom half way between the nipple and the chest wall so you have to look hard) and the one where the nodes were taken is just a smiley shaped one!  Have you had any twinges near the latter?  I do occasionally but apparently that is normal so I am not worrying about it.  Your experience of docetaxel is similar to mine - day four is the downhill day and I perk up about a week later (hopefully less).  You are so close to the end too - who would have thought we all would get here?  It seems in some ways to have gone so quickly.  Re the flu vaccine, when our grandson had leukaemia he could not be in school the day the others were having the nasal spray as it was live so he got a day off.  Now he just has it the same as them.

 

Lisa - I know you have until January but you are right, it will be over before you know it and at least you are not floored by side effects so that makes it seem a bit better I am sure.  I am feeling more tired now but I think it cumulative.  Well done on keeping so positive - it is a difficult road at times.

 

Much love to all and well done. xxx

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Re: August 2019 Chemo Starters

I rang my gp and asked for it for them. 
they are definitely entitled to it Lisa.

worth it I think.. 

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Re: August 2019 Chemo Starters

Stick on dots 😳not fits sorry predictive text 💕💕Shi xx

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Re: August 2019 Chemo Starters

Bag for surgery, button front pyjamas with short sleeves, dressing gown to wear over your op gown, pair of sliders/flip flops to wear while in hospital, lip balm and hand cream it gets dry in hospital, anosol (the op meds can bung you up) for after found a zip front bra with racer back from M&S worked well, go up 2 sizes you will be little swollen after. I used stick on fits on the door frame so I could see daily my progress with the exercises, do gentle and as your team instructs and your movement range will return ok. Hope this helps those jumping to surgery, we all bounds to surgery and rads thread but our chemo thread was our home thread where we all kept in tough right through ❤️💕💕Shi xx

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Re: August 2019 Chemo Starters

 

hello everyone

 

lovely to hear from everyone and catch up on how everyone’s doing. Julie I hope your next cycle doesn’t get put back.. keeping everything crossed for you. 
although Iv still got until the end of Jan to go with chemo the way these weeks are flying over I’m sure I’ll be there before i know it. At my last clinic appointment they said that the weekly pax is a low dose.. I’m on day 3 now after my first pax on Friday and apart from a few aches and pains and feeling tired im feeling ok and enjoying not having that horrible fuzzy head that the EC gave me. 🤞🏽 

I’m going to check about the flu jab as the breast care nurse told me the flu jab should be given before chemo but to check at my next clinic appointment. I wonder if my kids could maybe get it if I can’t. 

big hugs to everyone 

Lisa xxx

 

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Re: August 2019 Chemo Starters

Ahh Julie, you really have been through the mill haven’t you!!

Fingers crossed the tumour has shrunk, are you having a full mastectomy or just the lump removed?

i had lumpectomy before chemo, I have to say I’m pretty pleased with my scars now, they are literally just a line, one on my boob and the other under my arm where the nodes were taken.

 

The last round I had of docetaxol was pretty much the same as the first, felt okish till day 4 then just felt pretty awful until day 8/9. 
My last round is 19th nov, everyone tells me I should be pleased about this,which, of course, I am, however, I don’t feel overjoyed like I expected earlier on, I just think there are no guarantees that I will never have to do this again so I darent be complacent and celebrate if that makes sense. 
My husband and children have been given the flu jab as I have a low immune system, although they wouldn’t give the children the nasal spray as they say it’s a live vaccine and would affect me, that went down like a dream as you would expect 🤣🤣🤣 they were not impressed at all!!!!

 

Anyway, hope everyone is ok and feeling positive ... nearly there 💪

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Re: August 2019 Chemo Starters

Hi everyone

 

Great to hear everyone sounding so positive!  Yes, we're all approaching the next stage of our treatments now - although the thought of surgery is scary, it can't be any worse than the chemo in my opinion.

 

I had my 5th Docetaxel (+ Carboplatin + + +) last Thursday but unfortunately had to have another blood transfusion the following day.  The hospital told me that would be needed earlier in the week, so it wasn't a result of the 5th treatment but the one before when I had to have a week's delay due to low platelets.  So if it's not platelets it's anaemia for me it appears!  Still, going to get through this and out the other end - my 6th and final chemo is due on 28 November and, like Blackcat, I really hope the bloods will be OK.  I'm finding the fatigue is worse now, although it does come and go.  I have an appointment with the surgeon next week when I'm hoping to be told the lump has reduced and then I'll be given a date for the surgery.  I'm not getting too excited as I thought it had shrunk when I went to my last ultrasound and was SO disappointed when it hadn't (well, hardly).  The psychological effects of all this are becoming more of a reality for me now - but need to soldier on and we'll all get there.  I am still in my first week though, so as others have said I'm probably just forgetting how it gets better by Week 3.

 

No-one has suggested I have a flu jab, so I haven't had one (or pneumonia).  I think I'll give it a miss as I've never had one before and if I can get through the next few weeks hopefully won't need one.

 

Love to everyone - we really ARE getting there!

 

Julie xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

It’s great to hear that you enjoyed your trip away!  It’s true that when you get to week 3 of the chemo cycle and feel well, you can hardly imagine how you felt at the lowest points of week 1.  I guess our minds blot it out.  Won’t it be wonderful when our lives are no longer governed by the three weekly chemo cycle, and we will be able to plan things normally again!

 

I had my flu jab at my GP surgery a few weeks ago, having been told by my oncologist to get it a couple of days before a chemo treatment when my neutrophils were high.  I was told by the nurse giving me the jab that it can make your temperature rise for a few days, and my temperature was indeed higher than usual when I went for the chemo (but as it was still only 37.3, it was fine to have the chemo).  I was also offered a pneumonia jab, but did not have it on the same day as I wanted to check it was OK with the oncologist.  It is OK, apparently, but I have not had it yet as I couldn’t get a slot with the GP at the right point in the chemo cycle.

 

It’s great to see how all of us on this thread are slowly but surely getting through our treatments.  I will have my last chemo on 20 November (fingers crossed that bloods are OK), which is now just a week on Wednesday!   I also have a breast MRI this Wednesday to assess the effects of my second chemo regime and provide information for the MDT (in particular relating to the options for surgery), and then I will have an appointment with the surgeon on 28 November.

 

I hope that everyone will have a good week, and wish everyone who is having a treatment this week all the very best.  We are all getting there, and the light at the end of the tunnel is definitely visible.  Love and hugs to all.

 

Blackcat xx

 

 

 

 

 

 

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Re: August 2019 Chemo Starters

Hi Lisa and everyone

 

Hope all are well - Lisa, sounds like you are doing well following paclitaxel - I do hope that has continued.  

 

All good here, had a lovely couple of days down in Hampshire with my eldest stepdaughter and her three boys aged 9,7 and three (husband was away sadly) which was just so nice to not be here and not thinking about cancer.  I felt OK, got a bit tired but nothing special.  On the way back we called into the village I grew up in which is in Bucks to put flowers on my parents and grandparents graves.  I always love going back there, such happy memories.  Then a great lunch with really good friends on Saturday in a tapas bar in town so a good few days.  Now, three days away from docetaxel number two and overall number five of six so the light at the end of the tunnel is beginning to show.  I have a call with the chemo nurse on Wednesday but I hope all will be well and I can carry on as planned. Isn't it funny that when you feel better in week three, its hard to remember how rubbish you felt in week one?  Still, we are getting there girls and this will all be worth it.  I have booked my flu jab for tomorrow - anyone else had theirs?  When I was working it was easy to get but its a bit more problematical now but its worth doing.  

 

Take care and much love, xxxxx

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Re: August 2019 Chemo Starters


hi everyone.

 

hope everyone’s ok and enjoying any time  your getting feeling well enough to get out and do things. 

I had my first paclitaxel on Friday and I’m feeling very tired but apart from that and a bit achy im not feeling too bad. No steroids to bring home with me this time so actually got a good nights sleep last night.. amazing how much it helps getting a decent nights sleep!

no fuzzy head like I got from the EC either 👍🏼

big hugs

 

Lisa xxx 

 

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Re: August 2019 Chemo Starters

Hi Blackcat and everyone

 

So good to hear everyone sounding positive as we travel along this chemo road.  Julie, you are right I think, I am becoming aware (at least I think I am) of when my neutrophils are low as I have increased sternal and low back discomfort and I agree that is when you need to rest a bit.  Yesterday was day 7 and I began to feel a bit better although still nauseous in the evening - I am convinced its the injections!  Blackcat, you sound as though you have a great plan to get back to normal life - I for one am really looking forward to getting back to the gym, seeing my friends and getting fit again.  I feel so unfit, just walking up the hill to the village leaves me lightheaded!  But hey ho, I think I am turning the corner and am looking forward to a couple of relatively normal weeks before cycle five.  Then I think I see the oncologist before cycle 6 to talk about radiotherapy and possible biphosphonates.  

 

Blackcat, thanks for the tip re jelly beans - always worth a try.  I have found over the days when eating has been hard that scrambled eggs is a real treat too!

 

Love and hugs to all xxxx

 

 

 

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Re: August 2019 Chemo Starters

Hi JulieME (and everyone),

 

I’m glad to hear that your fourth docetaxel (plus other drugs) treatment went well.  The timings of the side effects for this treatment are strange, aren’t they - in the first few days eating is OK, then the foul taste arrives and food seems repugnant.  I had my fifth treatment yesterday (docetaxel/herceptin/perjeta) and am of course currently high on steroids, so am starving and have to keep raiding the fridge.  I know, though, that in a few of days I will probably be struggling with the foul mouth taste and finding it difficult to eat, although I don’t actually feel nauseous. My oncologist suggested to do exactly what you are doing - to eat as well as possible in the parts of the cycle when you can, so as to make up for the days when you eat less.  My weight is going up and down across the cycle too, but on weighing in day before treatment, I have always managed to be about my original weight.  Other than having red hot steroid cheeks, at the moment I am feeling well and don’t have any other side effects, but I will be doing the first filgrastim injection tonight and so no doubt some bone pain will kick in, probably to be followed by some digestive disruption!

 

I have found something nice to help with the foul mouth taste - a friend who previously had chemo sent me a tin of jelly beans (Jelly Belly, but other brands are available) which she said had helped her - because they are small and have quite a range of vivid tastes, they are good at freshening up the mouth and cutting through the grim taste.  I tried out a few (quite a few, if I’m honest) of the beans over the days of the last cycle, and was surprised to find that they do work well.  Unfortunately friends and family keep pinching them, so I will need to get a new bag to fill the tin!

 

I now have just one more chemo treatment to go (No 6 on 20 Nov), then will see the consultant surgeon on 28 November to plan for surgery in December.  After that I will still have continuing treatment of 14 three-weekly cycles of herceptin/perjeta infusions, but as these are antibodies and not chemo, there is no need to be immune-suppressed or to have frequent pre-treatment bloods tests, so the oncologist says it should be possible (hopefully, if surgery goes OK) to get back to working full-time around early February.  I will need to see how things go, of course, but it is giving me hope to think of the possibility of returning to something of a normal life in the not too distant future.  I really miss my job (I work for a charity supporting people living with dementia and cognitive impairment), and I have found it hard to be signed off totally during treatment due to infection risk, as a lot of my work is based in GP clinics and other frontline healthcare settings. 

 

I hope that everyone is having a good day with the least possible side effects, and that everything will go well for anyone with an upcoming treatment or appointment.  We are all making progress through the treatment journey, bit by bit, and the light at the end of the tunnel is getting closer.   Love and hugs to all.

 

Blackcat xx

 

 

 

 

 

 

 

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Re: August 2019 Chemo Starters

Sorry to hear Docetaxel isn't treating you kindly, Wolvesgirl.  I had my fourth of that (plus others) 2 weeks ago, and I was surprised it was the easiest to cope with so far.  I think I may have just got used to the nausea, as I was told it was likely at the beginning so didn't expect to get away with it!  I found I could hardly eat (each time) from Day 5 to Day 8 and SUCH a foul taste in my mouth didn't help (I think Blackcat mentioned that).  Then from about Day 10 I felt better, and had to seriously start eating to regain the weight I'd lost before being given the next treatment.  The chemo fog lasts a bit longer with me - I've found one of the worst things about all this is not being able to think clearly.  I feel I'm likely to make mistakes, so I check and double-check everything - then STILL make the mistake.  

 

So I'll be having my 5th Docetaxel (+ Carboplatin + Herceptin + Ptsumababababbabbthing) on Thursday next week, provided my bloods come back OK... which I really hope they do this time.  I've also now been given an appointment with the surgeon (having op after 6 chemo cycles) so progress is being made.  Don't forget it's important to rest while your body is re-making your platelets etc - I think that's where I may have gone wrong before.  Good luck to everyone having treatments this week (and everyone else of course).  Julie xx

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Re: August 2019 Chemo Starters


Hi Wolvesgirl

 

Sorry to hear you’ve had a rough few days but glad your feeling a bit better today. I’m feeling pretty much back to myself now after my last EC. 
it’ll be the end of January before I’m finished this chemo journey but if it’s anything like the last 3 months it’ll fly over! I’ll just have to try and take each week as it’s comes and once I’m half way then I’ll start counting down. 
Were all at very different stages in our treatment but we are all getting there ladies 💪🏽 

hugs to all 😘 xxx

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Re: August 2019 Chemo Starters

Hi everyone

 

Good to hear how everyone is getting on - Spottycotty and Blackcat, by the time you read this you will have had your fifth cycle and be well on the way to finishing.  So pleased you had a good weekend away Spottycotty, it must be such a mental lifter to do and see something different.  I agree re getting fed up of this ruling our lives - Lisalou - I know you have several more weeks to go as well but you will smash it.  I think you adapt psychologically to what treatment you know you have to have and get that fixed in your mind.  We will all be in a position where we move onto the next phase, be it surgery or radiotherapy in due course and I think (in my case) that will be a breeze compared to the chemo.

 

I have had a challenging few days with side effects of Docetaxel - very disappointed to have had nausea but also significant heartburn and some abdo pain, and the fatigue is overwhelming!  I have literally done nothing for three days - today is the first day I have opened my laptop and actually done something (though not much).  For me to be off my food is unusual but the thought of eating anything other than ginger biscuits has been too much.  Hopefully that means I am on the mend and can get on with my coursework tomorrow when my brain is a bit more together.  I am going to try to go for a short walk this afternoon with my husband as I am sure that will help.

 

Wishing you all love and best wishes and looking forward to hearing your news xxxx

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Re: August 2019 Chemo Starters

Hi Spottycotty,

 

Glad to hear that you have had a nice weekend away (as I’m in York, you’ve been in my neck of the woods!).   All the best for your Treatment No. 5 tomorrow.  I have my No. 5 on Wednesday, and  I know what you mean about it all wearing a bit thin now.  I think that as the cycles go on, it’s natural to feel a bit tired of having our lives governed by the chemo cycle and its side effects.  I have just got back from an echocardiogram, and when I was waiting (the clinic was running late) I looked at all my past appointments on the calendar on my phone - I seem to have been at the hospital 42 times since I was diagnosed in July, if you include short appointments for bloods etc!  So the end of the chemo treatment can’t come quickly enough, even though I know that there is still a long way to go as I will have surgery following chemo.

 

After we have had Treatment 5, there is only one more to go, so we are getting there and soon will see the light at the end of the tunnel.  Fingers crossed for no infections in the final two treatments.  

 

All the best to everyone on the thread.

 

Blackcat xx

 

 

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Re: August 2019 Chemo Starters

Hi,

 

Hope everyone has managed to enjoy the weekend. 
we’ve had a nice weekend away in a log cabin just outside of York, very peaceful, just what the doctor ordered!!!

got home today feeling a big down as it’s chemo day tomorrow but my lovely friend has posted me a card full of motivation for me to find upon my return, it’s so lovely.

so number 5 of 6 for me tomorrow, it’s all wearing a bit thin but definitely getting there now....

Wolvesgirl, how are you feeling???

Lisaloo, it does sound like a long road ahead but hopefully it will fly by and you’ll be at the end before you know it...

 

Hoping everyone else is ok too xxxxx

Speak soon, hoping to not get an infection this time round 🤞🤞🤞

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Re: August 2019 Chemo Starters

Thanks Shi

Granny visit will be very much under control - eldest grandson (now 9) had leukaemia just before he was three so whole family down there very geared up to risks of immunosuppression and being exposed to new germs.  I won't be allowed near if any colds or school bugs around.  Granny from a distance!!

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Re: August 2019 Chemo Starters


morning Wolves girl 

 

glad to hear your ok after your Treatment. I’m now 7 days post Ec so fuzzy head has lifted and started to feel more like myself again. My mouths a little bit sore this time round but making sure I keep it washed out with mouth wash and also got my freshly chopped pineapple in the fridge too. 
Iv still got 12 weeks of paclitaxel to get through so still a long way ahead for me.. although I can’t believe how fast it’s gone since my first treatment on the 16th August! 
Iv got out for a walk the last couple of days but it’s pretty bleak here to today. No rain but very cold. 
hope everyone’s ok.

Lisa xxx

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Re: August 2019 Chemo Starters

Hi wolves girl 😁 if you get the t ‘slime mouth’ fizzy water has helped others 👍 if you get hurricane botty up your carbs and bit of Imodium 👍 you are doing great 💪💪💪 when you are on granny visit just be careful ❤️ And have a lovely time ❤️😘💕💕shi xx

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Re: August 2019 Chemo Starters

Morning All

Thought I would message whilst still on steroid high after my first Docetaxel yesterday.  All went well - still cold capping which adds time on but not as much as before but it probably works out about the same as the infusion takes longer than the three bolus meds.  Felt fine last night and slept well and so far the same today, however am aware that the next two days will probably see a dip once the steroids wear off.  

 

I only have five days of GCSF jabs this time instead of seven and have the antibiotics to start next week but thats it unless I need antiemetics in the meantime.  Some taste changes noted but so far not too bad.  

 

Fingers crossed that these three cycles are better than the last three.  Still hoping to go away in a couple of weeks on granny visit to Hampshire.  

 

I really hope you are all well and getting through this - we are nearly there, I think I was last to start and have two to go so well done us!  Have a great weekend - already pouring with rain here so an in day I think - the dog certainly thinks so!!

 

WG xxxx

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Re: August 2019 Chemo Starters

Hi Julie

 

Thanks for the reply - glad to hear that you are not suffering more each cycle.  I found that with the three FEC cycles - the first was awful and I was in hospital for a week but the other two, whilst unpleasant, were manageable.  Just hoping the Docetaxel will be the same and not be cumulative.  I agree, I would have been really disappointed to have a delay for a week and I hope that won't happen to me but your body clearly needed the extra time and I am sure that you had a better experience because of that additional week recovery.  Nearly there - keep well and as you say, we will all soon be looking back on this as a memory! xx

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Re: August 2019 Chemo Starters

Hi everyone, and thanks for sharing your Docetaxel experiences. It sounds like we're all suffering similarly - although as I think I said before, I've had no nail problems and am only moisturising them with plain Nivea cream.  I had my fourth Docetaxel cycle last Thursday (with all the other drugs I'm having) and have only just starting going 'downhill' today (Day 5).  I guess I'm used to the symptoms now as I haven't been on another regime but, so far, each time has NOT got worse... so please try not to worry.  I had to have a week's delay last time because of low platelets and, although it was annoying and a bit upsetting to put the whole course back, I'm now thinking it might have actually helped - a short break to give my body a chance to get a little better before the next onslaught.

 

I do agree it's constant adaptation - with what drugs we're taking to ward off nausea etc, best foods to eat, sleeping/resting etc.  Each cycle I've thought I could predict what was going to happen next, and then something else happened instead!  You're right though, Wolvesgirl, we are definitely getting there... it did seem like too huge a mountain to climb in August, but I'm starting to feel we're reaching (or have reached) the peak and it's downhill from now.  And we WILL all get through it - this time next year we'll be laughing about how many medical terms and names of drugs we learned, even though we'll have forgotten them all by then.

 

Good luck everyone, Julie x

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Re: August 2019 Chemo Starters

Hi Blackcat

 

Thanks for the post - and for the Evonail suggestion.  Glad to hear that so far it has been good for your nails - I will probably paint my toenails red again before Thursday (they are having some time off at the moment after a summer of being painted) but will just have the Evonail on my hands.  Thanks as well for the information about how you have found Docetaxel - its always reassuring to read your words.  As I said, some people have clearly really suffered with it and its hard not to be slightly concerned when you read things.  I am sorry you have had some gastrointestinal side effects but it sounds like you have them under control now.  Its just a constant adaptation isnt it?

 

I have just had my call with the CNS who was one that I don't know but she was very helpful and kind.  She was able to assure me that due to my initial reaction to FEC when I was in hospital for a week they will keep me on 80% dose which I am pleased about as hopefully it will make sure that the side effects are proportionally reduced.  I was worried that it would automatically go back to 100% dose as its a new drug.  She also said, interestingly, that the majority of people on FEC-T have a dose reduction at some stage but given what I have told her she just said that I seem to be pretty sensitive to medication.  Goes to show how vicious it is as a treatment so hopefully its zapping any cancer cells it finds hidden away.  We talked about all the side effects you mention plus the fact that the "danger days" for neutropenia are a bit earlier with Docetaxel at days 7-11 which probably explains your slight pyrexia on days 9-11.  I noticed a similar temp rise during my last cycle of FEC but it didn't go above 37.5 (nothing like cycle one) and actually when I checked in the other ear it was always a bit lower so I split the difference!  Like you I have the GCSF injections so am well used to them now.  We did talk about the SE of that but as she says its really hard to know if its the injections that cause certain things or the chemo.  I personally feel better once I stop them but who knows. 

 

I told her we are away for a couple of nights to see the grandchildren this cycle which she was OK with as its later in the cycle and gave me some advice about keeping safe.  She also said that Docetaxel is less toxic on the veins especially when compared to Epirubicin which has pretty much wrecked the veins on my right hand.  However, I now feel more confident that the veins on my left will survive the next three infusions.  

 

So we are getting there aren't we?  Soon be November and we can all say we are in the last month or two of treatment.  It seemed so far away at the beginning but I do feel that time has sped up over the last few weeks.  Thanks for your support - will post after Thursday.  xx

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Re: August 2019 Chemo Starters

Hi everyone, 

looks like I’ve missed loads since being away, lots of reading to catch up!

 

Ive been pretty poorly after my 1st docetaxol to be honest, the day after treatment I was sat in Starbucks feeling pretty chuffed with myself because I had no nausea and that I would usually be out for the count for a week after EC! 

Anyway, my symptoms were extreme tiredness, I was falling asleep at the drop of a hat but then fatigue too, I really couldn’t be bothered to even speak at times ha ha!!

I was having 6 poos a day which the hospital weren’t too bothered about as it was soft not runny and I was waking every hour and a half throughout the night with hot sweats, I

I started to feel unwell on day 5 with a sore throat, again I rang up and they said just to monitor it, day 6 and 7, the pains started, felt like I was in labour with the pains in my back but the pain was everywhere else too. I took co codemol which did help but I couldn’t make it to 4 hours without the pain returning so I had 1 tablet every 3 hours to keep doses up. 

I then felt really shivery, hot/cold, again I rang up and was told to monitor. Got to Thursday morning, woke with a temp of 38.2 so was told to go in and take an overnight bag 🙄

Was put on a drip, bloods etc done and ended up being sent home with antibiotics for 5 days.

I won’t lie, it’s been an awful 2 weeks, I feel well today for the first time and I’ve only got 6 days left before the next one 😩

I do wonder though if I would’ve found this round so bad if I hadn’t picked up this infection, it’s hard to know whether it’s the treatment or the infection, I just wish they’d told me to go in on day 5 when I rang with the sore throat.

What I’m trying to say is, don’t let this put you off Wolvesgirl!!! As you day everyone is different and no nausea has been great!

 

I have black nails on my thump and one finger as described in the half moon which has not showed any signs of leaving as yet, I’ve been using Sally Hanson vitamin E nail oil which seems to be doing its job up to now🤞

Anyway, hope everyone is well, we are all counting down to the snow aren’t we...can’t gone soon enough!!   

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

I hope that all on the thread are OK, and will have a good week.  I’ve been using Evonail regularly since the beginning of chemo at the start of August, and I think that it is doing a good job of protecting my nails (which are looking healthy and strong even after 2 x EC and 2 x docetaxel/herceptin/perjeta).  I think that it is mainly the docetaxel that affects the nails, and on each of the two last cycles I have noticed on about Day 5 after treatment that dark half-moon circles appear on the nail bed at the bottom of my nails.  These then gradually disappear over a few days and the nail goes back to normal.  Other people on docetaxel in my unit have had the same thing.  One person who had not used Evonail (or similar) now has permanent black areas on her nails, and also has some nails coming loose on her toes. 

 

I think that docetaxel is definitely seen as a hard-hitting drug in terms of side effects, but my oncologist told me that it is also one of the taxanes that has proved to be most effective, so if you can tolerate it, it is worth the side effects.  I am on Day 13 of the second docetaxel cycle now, and I am not finding the side effects too bad, although there are a certainly a few of them.   In both cycles, on Days 1-4 I felt very well (and of course was wired up by the steroids).  On Days 5-9 I had a bit of bone pain after the filgrastim injections (this was managed with paracetamol), plus some digestive problems (speeded up digestive transit and some loose stools/rumbling innards/wind, although not diarrhoea as such - occasional loperamide helped with this) and also a most disgusting taste in the mouth which put me off eating.  On Days 9-11 in both cycles I have had a slightly raised temperature in the mornings (37.3-37.5, but always coming back down to about 37.0 by lunchtime), plus a rash on the cheeks which subsided over a couple of days.  From Day 9 onwards, I found that I could eat normally again.  On the first cycle, from about Day 14 I felt back to my usual self and also was quite full of energy - so far I have never felt too physically tired on the docetaxel.  I am hoping that it will be the same on this cycle.

 

I have not had any symptoms of peripheral neuropathy (so far), but this was something I was concerned about as I know it can be caused by docetaxel.  Some people in our treatment room have had this and have noticed a tingling in their feet when the drug is infused, but I have not experienced this myself.

 

I have two more cycles to go with the docetaxel, so am hoping that the side effects don’t get any worse over time.  The bone pain was definitely much less on the second cycle, but this is probably because I did the injections in the evening.  The digestive issues are a pain, but I am a getting more used to how they affect me and when to take the loperamide to control them.  

 

I hope that all goes well for you on Thursday, and that you don’t find the docetaxel too bad.  We will look forward to hearing how it goes.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi everyone

 

Hope you are all OK.  Lisa - I am using Evonail too - it was Blackcat that mentioned it so I got some from Amazon as I would rather not paint my nails - it looks weird to me having colour on them!  My nails are pathetic anyway so I am bracing myself for them to be affected with the Docetaxel and am just keeping them short and neat(ish).  

 

I have my call with the CNS today prior to my first Docetaxel on Thursday.  Feeling apprehensive but in a way pleased to be moving on - as we all seem to be - to the next phase.  I think I have read too many posts on here and Macmillan of people saying how dreadful it is so I am just remembering my consultant saying that everyone is different so trying not to be too worried.  

 

Take care everyone and keep safe xx

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Re: August 2019 Chemo Starters


Hi Becki and everyone 

 

thank you for the update on how your pax is going. I had my 4th and final EC Yesterday, feeling ok at the minute and not too much nausea last night which is a good thing. Iv got an ultra sound over the next three weeks and a meeting with the surgeon. Then all being well onto pax starting the 8th November. Thank you for the tips on the nails. Mine have been ok on EC but I think it’s the tax that can be harmful to your nails. Iv got something on amazon I think it was that I was recommended called evo nail. It’s just a clear liquid and You just paint it onto your nails. It moisturzes and strengthens your nails and also has a UV filter. 

hope everyone’s ok and has a nice weekend. 

lisa xxx

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Re: August 2019 Chemo Starters

Jumping in here from June chemo 2019 thread.

re nails -  i was told by a friend who went thru chemo to paint my nails n toe nails with a dark colour polish ,which i did from my first session.

i also kept my nails out of bright sunlight and had no problems at all with them.   Its something to do with uv sunlight.

im now 2 months since i finished my chemo and nails still good but maybe a little weaker.  No black nails or nails lost 👍👍

good luck.  Mini mad xx 💖💖

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Re: August 2019 Chemo Starters

Hey All,

 

Feels like we're all getting a bit of a chunk of this under our belts now, Julie - that's frustrating with change of plans, I feel your pain a little having had a two week delay with blood clots and suddenly all my plans for a chemo free Christmas were scuppered - have you had your 4th cycle now?  Really interesting to see the difference in how things are administered. On fortnightly EC I had an appointment 2 days before each cycle with the oncology nurse consultant or chemo pharmacist, and they checked my blood results and we chatted through the SEs and it felt quite a thorough check in (although I blinking suffered on EC so maybe they gave me more time knowing I'd been ringing the chemo line most weeks!)

 

Today was my second weekly pax and it felt MUCH more casual - I did bloods at 11am and then snuck away for a nice lunch (I went on my own for everything today as wanted to just sit and listen to my podcasts after a busy week - I got a few pitying glances as being probably the youngest and slightly lonely looking patient in the ward today, but I was quite happy particularly as weekly pax is quite quick!). Clearly bloods were okay as I was called back in for 1pm chemo, the lovely chemo nurses met me but the check in was just 'how are you' and when I said 'okay' that was it! I don't think I clocked that this was my actual medical check in rather than just small talk. I think I get a proper chemo nurse clinic appointment after my 3rd.

 

Pretty sleepy now, but last week after my first pax was fine in the main - on day 3/day 4 I needed a bit of downtime mid-afternoon, but otherwise actually did quite a bit of house sorting, made a few yoga classes and saw some friends, plus managed to really make the most of doing school pick ups for my eldest and spend some proper time with her afterwards (when I'm at work she's often at afterschool club). I can sense that the tiredness will grow, and I'm getting lots of niggly things, crumbly nails, bad stomach, weird dry puckered hands and a bad stomach, but no crippling nausea or overwhelming constant fatigue, EVERYTHING CROSSED for this week. I've a little work planned and a few other bits and bobs I'm hoping to do in the next couple of weeks, but all on a 'might need to cancel' basis if things aren't quite so smooth...

 

louisefpage or anyone else - are you trying the freezy gloves for fingers and toes? My nurse reckoned there wasn't much science behind this so I didn't really look into this, but my fingertips are feeling a little strange (but feels the skin behind the short crumbling nails rather than the nerves) and I'm wondering if it's just worth a shot as well as the dark coloured nails.

 

Good health and speedy treatment to y'all! xxx

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Re: August 2019 Chemo Starters

Thanks Hodo

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Re: August 2019 Chemo Starters

Hi there, I am currently reading Victoria Derbyshires book 're her experience with BC and chemo and she wrote that she painted her nails with dark polish as this was supposed to assist ?? Have no idea why but sure others can help,  wishing you good luck on your journey. 

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Re: August 2019 Chemo Starters

Hi

My toenails have started to go black. They are very tender. I have read chemo causes this. Any suggestions please how to stop this. Many thanks

Louise

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Re: August 2019 Chemo Starters

Hi Blackcat

That sounds really organised and absolutely the sort of thing I would like to do - I love a spreadsheet!  In a funny way I wonder whether having such a process has helped you with how you have managed this process - whilst I know that side effects happen whatever anyone does, there has been a lot of research to show that being well prepared about something, generally surgery, has a positive effect on how a person recovers.  Wouldn't it be interesting to do a comparative study on different chemo units, their processes and patient reported outcomes......wonder if its been done!  

 

Hope your docetaxel combination is still OK and you are managing to be out and about.  xxx

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Re: August 2019 Chemo Starters

Hi Lisa

Thats great seeing the pharmacist - I haven't seen one at all during this process although any amendments to drugs seems to happen seamlessly.  Good luck with the last EC - what comes after that?  I have my first docetaxel next Thursday - bit nervous but glad the FEC is finished. xx

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Re: August 2019 Chemo Starters

Hi Ruthie

 

Thanks for the reply - your experience is much like mine - I actually have my bloods done in the phlebotomy lab so don't go the chemo day centre so there is no discussion at all.  Then I rock up the next day at the centre, the nurse looking after me (has been different every time but all excellent) discusses my results and goes through how I am etc.  In between treatments so far I have had two face to face sessions with a CNS (same one both times). I was due to have had another this week on Saturday with the Consultant as I was adamant that I would stop after the last FEC (cycle 3).  I think this was probably because on cycle one I had an admission and on cycle 2 I just got very down and couldn't shake it off.  However, I have had a change of heart and I phoned and suggested that was a waste of a Consultant appt and so I have a call booked with the nurse on Monday.  That suits me much better as one of my issues has been going onto site all the time - I just really value not being there (probably because I worked there I think).  The normal plan would only be to see the Consultant before treatment and then between cycles 5 and 6 to discuss and start the process to get into radiotherapy so that will happen as planned.  I have found that the CNS is very knowledgable and can answer any questions I have.  I rather like the idea of Blackcat's spreadsheet - sounds very organised.  

 

All the best xxx

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Re: August 2019 Chemo Starters

Hi everyone

Isn't it interesting?  I think generally we seem to feel well looked after - I know I do - but the variation in processes is wide.  I am sure there must be some NHS England overarching strategy for cancer care which probably gives baseline requirements.  There are Cancer Networks that measure care I think (dredging my mind back to my working days) so presumably there are measures that each centre and cancer type has to achieve.  One day I might feel like looking it up!

 

Hope you are all well - we have had lovely weather here the last couple of days and for the first time (not just due to the treatment but also weather and other commitments) for ages I was able to walk with a friend yesterday evening for about 2 miles which was just lovely.  She was my boss at one time and has been such a support during this journey, especially the darker days when she has helped me get a grip of myself and how I am dealing with the challenges!  Today I plan to walk to the parish hall where there is an auction every Thursday (also about a 2 mile round trip) just to see what there is.  Usually a bit junky tbh but if you look carefully you can find the odd gem.  Its always a bit sad as its house clearance stuff.  My best purchase was an old Belfast sink for £1 which is a great addition to the patio with herbs in it!  I am looking at buying a few Edwardian scent bottles so am on the look out for them at the moment and I have heard there may be one there today.  Also..... have booked a holiday for next May to the Outer Hebrides - I have a great longing to see their beautiful beaches so am really looking forward to it.  It will be a restorative week away and also a great opportunity for my husband to get some good photos.

 

Take care everyone xxx

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Re: August 2019 Chemo Starters

Hi Ruthie 

 

I have a breast care nurse but to be honest Iv never heard from it seen her since I started my treatment. I have a booklet that my Blood results and dates for next appointments are wrote in. This book also has a section that I can fill in with any side effects and how bad they were in. Everywhere does seem to differ a lot xx

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Re: August 2019 Chemo Starters

 

Jumping in if that’s ok as it constantly amazes me on how much treatment can vary. I’ve just had my last docetaxel (had 3 ec, 3 docetaxel on 3 week cycle). I saw the oncologist before I started, I see him again next week to be signed off as I have to go to a different hospital and oncologist for rads. That’s twice altogether.

each cycle I would go for bloods the day before where I was asked how I’d been, ok I’d say, oh thats good was the reply! No specific questions ever. I’d return the next day for treatment. Bloods were never discussed but I did take photos of my results in my notes and at each treatment there was always at least 6 flagged in red, always hb and RBCs.

I didnt/don’t have a chemo nurse I just had to ring the ward if I needed to. No chemo books or cards at all but I did always see the same nurse apart from once as she was on holiday.

still I wasn’t really ill or anything major (although struggled mentally big style) so  it did work for me. It’ll be interesting to see how the new place compares.

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Re: August 2019 Chemo Starters


Hi ladies 

 Hope everyone’s ok. 
I get an appointment to see the either the pharmacist and chemo ward sister or my oncologist on the Wednesday before my treatment in the Friday, I also get my bloods taken on the same day. I can discuss anything I’m worried about or side effects that Iv been having and they’ll alter meds if needed and those will be ready for me on the Friday when I get my treatment. I’m assuming if there’s any problems with my bloods they’ll ring and let me know on the Thursday. There hasn’t been up to now 🤞🏽 It is interesting how each hospital does it differently. Iv got my appointment and bloods tomorrow then my 4th and final EC on Friday all being well. 

Lisa xxx