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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Dear Spottycotty and everyone

 

Great to hear that everyone is doing well - Julie, excellent news about the response to chemo and that you are on course for your lumpectomy - personally, I found the surgery really easy to recover from so hopefully you will too.

 

Spottycotty - I would find the delay really frustrating - I had a delay  of a couple of weeks which was nothing compared to yours and I share your irritation.  However, info for you - I have just got back from the planning scan - very easy, the 30 seconds are actually less but as the CT scanner cannot detect if you start breathing again and therefore won't stop scanning, they want to know that you can hold your breath for longer than you probably need.  The radiotherapy machines will stop automatically.  It took about 40 mins in all and most of that was explanations, getting me lined up and fiddling around.  The scan itself took about 3 minutes.  I have my dates for treatment - I start 16 January so not too long.  I actually found the whole thing really easy - the girls were very friendly and helpful and even the tattoos are not too obvious.   

 

Blackcat - glad you will only have one night in hospital and only one drain to contend with - I am sure you will manage splendidly and I look forward to hearing how it has gone.  Will be thinking of you.

 

Lisa and Hollyleaf, nearly into January - your last month in which you will have treatment - great news.  Hollyleaf, I will be interested in your feedback re surgery and what they say about reconstruction etc.  Lots of big decisions to make but I am sure you will be supported in doing so.  

 

Take care everyone, xxx

 

 

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Re: August 2019 Chemo Starters

Hi everyone,

 

Glad to see everyone is doing Well, Lisaloo, glad the time seems to be  flying by for you, welcome Hollyleaf, lovely to hear from you!!

 

Well it seems everyone is starting to move on now, Wolvesgirl, your post made me slightly frustrated due to my circumstances with radiotherapy at the minute!

At my discharge appt with Oncologist on 10th dec, he mentioned that he had referred me for rads in Oct and asked if I’d received the letter, I said I hadn’t, he looked and said that actually it hadn’t been sent to rads dept until 2nd dec, he told me he would chase it up that day.

I received my appt letter this week for 31st Jan!! This is just the initial meeting so the treatment won’t start for another couple of weeks after.

I was so upset and angry, I go half pay 11th Jan and was hoping all treatment would be done by end of Jan and I could start thinking of going back.

I rang and complained and they admitted I had been overlooked so have now given me 15th jan appointment which is better but still too long to wait in my opinion, my last chemo was 19th Nov.

So this will put my return to work back another month now, it’s so frustrating!!!!

 

Anyway, enough of my whingeing, I’ve got another worrying time tomorrow, I hid hubby’s pressies when i was emerging from last chemo and now I can’t find them 🙄🤣🤣 He’s at work tomorrow so I’ll have to have a really good hunt round for them! I swear I can’t be trusted with anything these days 😂😂😂

 

Have a lovely Christmas everyone, here’s to a happier, healthier new year 🥂

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Re: August 2019 Chemo Starters

Dear Lisa, Blackcat, Wolvesgirl, Julieme and all,

 

Thank you so much for your replies and understanding. It is a difficult journey and I remember my heart sinking when after the first ultrasound and two chemotherapies nothing had changed. Thankfully my oncologist changed strategy and moved onto docetaxel. I had a large tumour, 44mm which had shrunk to about 29mm but I have had two more docetaxel since my last scan, so I am really hoping it’s a lot smaller now. I actually cannot feel anything so I am going to ask for another scan before my last chemotherapy. Hopefully not an ultrasound as things were hard to see from the last one.

 

 I will report back on my chat regarding reconstruction/surgery. There are so many things to consider: recovering, radiotherapy, how an implant might look and feel and any pros and cons. 

 

So glad to hear we are nearing the end of chemotherapy, for some is nearly the end of the journey, not yet for me but it feels good that part one is nearly over. 

 

Much love to you all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi Julie,

 

Fantastic news about the tumour shrinkage, and good luck for the surgery next week.  I’m glad that your tastebuds are recovering just in time for Christmas.  Take care, and let us know how you get on.  

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi everyone (new and old posters and readers)

 

Great to hear everyone is getting there.  My last post was that I was disappointed my lump had not shrunk, according to an ultrasound, and I must admit I deliberately haven't posted since then because I couldn't think of anything positive to say.  As others have said, we've all had to deal with this in our own ways but I didn't see any value in posting "depressing" news.  BUT... I've now had good news!  Because the surgeon wasn't happy with the ultrasound result, he sent me for another MRI - which revealed my tumour has shrunk from 3cm to 3mm!!!  Although I (and the docs) can still feel a larger lump, they believe it's scar tissue and say that the MRI doesn't lie.  (Hollyleaf - that was after 6 x Docetaxel + Carboplatin + Herceptin + pertuzamab.  I was quite ill with it - had to have 2 separate blood transfusions, and had 2 delays of a week each time for low platelets.  But we got there in the end!).

 

I'm now booked in for surgery next Friday, 27th December.  It should just be a lumpectomy and removal of the first few lymph nodes to be on the safe side.  I'll then have radiotherapy (daily for 3 weeks) but don't yet know when that will start yet.  I'll continue with the Herceptin/pertuzamab for a few months and then follow with hormone tablets for 5 years I think.  Still feels like a long road, but I'm on Day 18 of my last Docetaxel and nearly all the side effects have gone.  I'm actually starting to enjoy food again!

 

So, thank you all again for keeping our spirits up when we've needed it and sharing experiences.  Wishing everyone a peaceful and happy Christmas, and especially a very healthy New Year.  I won't be sorry to see the back of 2019, and I'm sure you all feel the same.

 

Best wishes, Julie xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

All the best for your planning scan appointment on Monday - I hope that the 30 seconds goes quickly!  

 

As I’m not having reconstruction, if all goes to plan I’ll be in hospital for one night and then sent home with one drain (the lymph nodes will be removed via the breast incision, so there will just be one wound).  I will report back on the thread as soon as I am able.  I am feeling a bit apprehensive about being in hospital and about the operation, but not actually about losing the breast as I will be glad to know that all the tissue where the tumour was has been removed.  I have got the hospital bag ready and the pre-op assessment team have confirmed that I don’t need any further tests, so for the next few days I will be trying to enjoy Christmas and not think about the surgery.  My tastebuds now seem to have fully recovered from chemo, thankfully.

 

Merry Christmas everyone, and may 2020 be a better year for us all!

 

Blackcat xx

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Re: August 2019 Chemo Starters

 

hello Hollyleaf

 
im so pleased that we’ve all managed to help you along the way with our little tips. Everyone chooses to deal with things differently and I too haven’t looked at anything on google. I did when first diagnosed and scared the life out of myself and after a chat with my breast care nurse she said it’s the worst place as a lot of the info in inaccurate and out of date I told myself I’d not go on it again and I haven’t! (Very proud) 

You started yours on the same day I did and we’ll be finished around the same time too! Well I’ll be a couple of weeks after. I also am yet to have my surgery but haven’t had the reconstruction chat yet. I’m having a mastectomy.  It sure about radiotherapy yet. 

Hope side effects are kind following your latest cycle and that you enjoy Christmas and new year. Let me know how your chat goes about reconstruction. I’d be interested to hear what your advised. 


wolvesgirl - hope your scan goes ok on Monday and you manage to hold your breath! It’s easier said than done isn’t it!  

Lisa xxx

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Re: August 2019 Chemo Starters

Dear Hollyleaf, Lisa and Blackcat (and anyone else reading this),

 

Firstly, welcome Hollyleaf!  I am sure there are more people who identify with a monthly group but don't post - I think however these threads work for each of us is fine.  So pleased that you only have one more Docetaxel to go in January - it will soon come round but it has been a long road for you.  Glad that the tumour is shrinking and the chemo is doing its stuff.  I can't advise re reconstruction as thats not been something I have had to think about - I had a WLE before the chemo and so don't have the surgery ahead of me (hopefully).  I have my planning scan on Monday prior to radiotherapy.  I have been practising holding my breath for 30 secs lying on my back with my arms above my head as requested by the hospital - its harder than you think and for someone who prides herself on fitness its rather salutary that I can only just do it.  Its fine sitting up but thats no good for the scanner!

 

Lisa - well done re your chemo - end of January will soon be here and now you are past half way it will fly by.

 

Blackcat - will be thinking of you on the 2nd but it sounds as though the preadmission clinic did its job and provided you with the information that you need.  No doubt we will catch up once you are feeling up to it.  How long will you be in hospital?  

 

All - I wish you a happy and peaceful Christmas and a health 2020.  We have all been up against it this year so we deserve it!  Right, am off to polish brass in the church ready for the carol service tomorrow.  

 

Much love xxxx

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Re: August 2019 Chemo Starters

Dear Lisaloo and all on this thread,

 

 I have been reading your posts with such great relief from about the end of August. I started chemotherapy on the 16th of August and today I had my 7th treatment (only one more to go on the 10th of January all going well). So sorry it’s taken me so long to post, I followed a friend’s advice and have not Googled anything. I only read your posts (was terrified stuff was going to appear on my feed!).

 

Anyway, here I am with hormonal breast cancer and on my 5th docetaxel after 2 FEC which didn’t work. Thank goodness the docetaxel has already shrunk my tumour a lot. Only one more to go.

 

It has been so great to read all of your tips. Thanks especially to whoever posted about the full English breakfast on the day of chemo, it works! Thanks for the warm water bottle on your arm (mine were very sore with FEC and after my first docetaxel went to out of hours for a minor blood clot. All was well though. Lately I have had trouble with my nails but I have just applied the Evonail for the first time tonight. I really hope it works on my half black and painful nails.

 

As my thoughts turn to surgery I am scared. I am small chested and chances are I might have a mastectomy. I am meeting my oncologist on the 2nd (someone is having surgery on that day, good luck!) to discuss surgery and my meeting with the surgeon.

 

Any advice greatly appreciated - with regards to pros and cons for reconstruction. I will also have radiotherapy afterwards. Lots still to go.

 

Thank you for reading this belated post and I hope you all have a peaceful Christmas with your loved ones.

 

Hollyleaf

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Re: August 2019 Chemo Starters


good morning everyone.

 

Blackcat and Wolvesgirl.

 

loveley to hear your starting to feel back to normal following your final chemos. I’m onto number 7 tomorrow so I’m over half way and really starting to see the light at the end of the tunnel for the chemo part of it anyway. Once Christmas and new year are out the way I’ll be on to the final 3! Still managing with side effects mainly being tiredness and aches and pains. My mouth has been very dry and a bit sore this time around though. I hope everyone has a lovely Christmas and new year. 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and all on the thread,

 

Great to hear that you feeling well after your last treatment cycle, and that everything is in hand for your radiotherapy to start in the new year.  It’s so encouraging to see everyone on the thread making good progress and moving on to the next stage of their treatment plans.  When we all started out with chemo in August, the next stages of treatment seemed so far away, but - helped by the wonderful support of this thread - we are getting there and are moving slowly but surely toward recovery.

 

I had the pre-op assessment for my surgery on 2 January (mastectomy plus axillary node clearance) last Thursday, and got the hospital admissions letter today, so the next stage of my treatment now seems like a reality.  I had not thought much about the surgery during the 18 weeks of chemo, as the date for the operation seemed so far away.  I have felt a bit nervous since the pre-op, as the sight of the enormous drains bottle freaked me out a bit, but the BCN was very helpful and reassuring.  She gave me a goody bag containing a heart-shaped cushion, a floral bag for the drain, and two softie prostheses of different sizes, plus lots of information about post-surgery bras.  She recommended Asda bras as being comfortable and good value, so I have bought a couple of packs of them (for immediate post-surgery and for later).

 

It is four weeks today since my final chemo treatment, and I am finding that my tastebuds are finally getting back to normal!  I am feeling much less tired too, despite being busy with various Christmas preparations.  I can also cook properly again for people with normal tastebuds (during my first chemo cycle when I could taste nothing, I made a chilli for friends and put in about four times the normal amount of spices, which obviously nearly blew their heads off).  I am really appreciating small things about food, like the smell and taste of an espresso in the morning, or being able to eat a runny egg with buttered toast.  I guess it’s true that cancer, and cancer treatments, make you appreciate the ordinary little pleasures in life.

 

I hope that everyone on the thread Is doing well, and will be able to enjoy the Christmas and New Year period.  Whatever you are doing, I hope you have a great time.  I also wish everybody all the best for any upcoming treatments or appointments, and for a very happy and healthy 2020. 

 

Blackcat xx

 

 

 

 

 

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Re: August 2019 Chemo Starters

Dear Friends

 

Just wanted to wish you all the compliments of the season - I hope that Christmas will be good for you and that we all have a healthy and happy 2020.  

 

I am getting on well following my last cycle - 14 days today and pretty much back to normal.  I saw the Registrar yesterday, signed consent for radiotherapy and then saw one of the radiologists who explained the process.  I am waiting for a call from the hospital for my CT scan appointment to set up ready for radiotherapy in the new year.  The scan should be done before Christmas.  This is when the tattoos get done and they do all the measuring.  Then the scan has to be reviewed by the consultant who does the treatment plan.  He is away until after Christmas so early January will be when I start my 20 doses (15 plus 5 boosters).  Just want it done now......

 

xxxx

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Re: August 2019 Chemo Starters

Thanks Blackcat

I am certainly finding the fatigue much greater this time - a combination I think of the cumulative effect of chemo and also the psychological effect of having finished the treatment.  I just want to sleep all day but am forcing myself to do things and keep on the go.  I have found that the docetaxel has resulted in significant constipation for me which has not been helpful either but I am dealing with that now.  (too much information I am sure).

 

Speaking personally, I am not too worried about the radiotherapy (I could be in for a shock) as chemo was the thing I dreaded most so I hope that you find the surgery to be straightforward and easier to recover from.  

 

We are all nearly there ladies...... xxxx

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Re: August 2019 Chemo Starters

Hi all,

 

It’s good to hear how everyone is doing - we are all progressing slowly but surely towards the end of treatment, even if we are getting a bit tired along the way.   I can certainly relate to the feeling of fatigue that several others are experiencing.  I am now 20 days after my last chemo, and am finding that almost every time I sit down after doing something physical, I fall asleep.  It feels to me as if my body is trying to rid itself of the final side effects of the drugs and gradually get back to its normal pre-chemo state, but that this process in itself is taking up a lot of physical energy.  My oncologist did tell me that the side effects of chemo are cumulative and so I should expect to feel tired for a while after the end of the treatments, so I guess that she was right.   I am really relieved to be finished with the chemo sessions, the steroids and particularly the filgrastim injections (normally I would have had another treatment this Wednesday), but I wonder whether the momentum of counting down the treatment cycles actually keeps us going forward, and whether once they are over it is natural to experience a bit of an anticlimax, particularly because our bodies are physically depleted and most of us still have more treatment (surgery or radiotherapy) to undergo. 

 

I’m not sure what the answer to the fatigue is, but I am trying to eat as well as I can and am taking advantage of the fact that my tastebuds seem slowly to be returning to normal.  I am also trying to get back very gradually to my former level of fitness, and am doing a little more exercise every day.  Like Spottycotty, I have been going to one or two Christmas parties which I have enjoyed,  but I find I don’t have the stamina to stay late into the evening like I would usually do.  I guess we just need to take things slowly and give our bodies time to recover from the battering they have taken from the chemo.  I am finding that some people expect me to be firing on all cylinders now that chemo is over, but - as we know - it’s not as simple as that, and we need time to get back to normal, or perhaps more accurately, to what our new normal is after chemo.  If our bodies are telling us to slow down and rest, then that’s probably what we need to do at the moment, and hopefully in time we will recover our usual levels of energy and enthusiasm.

 

I hope that everyone begins to feel better soon, and that anyone who is still having treatments has minimal (or ideally no) side effects.  My next challenge is a pre-op appointment with the surgeon and BCN on Thursday, prior to my mastectomy on 2 January.  I am finding the through of the surgery slightly scary as I have not had any operations before, but - like the chemo - it has to be done and I will just have to grit my teeth and get through it.  I think that if we can get through chemo with all its unpredictable side effects, we can hopefully get through most things!

 

Take care, everyone, and lots of hugs.

 

Blackcat xx

 

 

 

 

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Re: August 2019 Chemo Starters

Well done Spottycotty, going to a party - I can't imagine that at the moment but hopefully on 21st December we are going to a friend's 60th.  Bit of shame about the ankles though - hope that gets sorted.  

 

Yes the fatigue is so draining - today I have just pottered around but can't really get the enthusiasm up for doing anything - I hope this feeling will go soon.

 

I don't feel ecstatic either about finishing partly, like you, I still have radiotherapy to go - maybe thats when we get to hang the streamers out!

 

Take care and hope the appointment goes well

 

xxxxx

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Re: August 2019 Chemo Starters

Ahh so sorry to hear you ladies are feeling down, Lisaloo, Hopefully yours will fly by now, as you say we are in the middle of December already. I can remember the feeling of it will never end though so I do understand how you feel.
I don’t feel down but I dont feel as ecstatic as I imagined I would now that the chemo is finished, I remember lying on the hospital bed in the beginning when I went in with nausea thinking I can’t wait to finish all this, I’ll be over the moon!!! I feel disappointed that I don’t feel like that!!

Ive got my (hopefully) final appointment with oncologist tomorrow, hoping to be referred on to radio, really wanted to crack on with that before Christmas but I can’t see it really.

 

I went to my gym Christmas party last Saturday, it was so nice to see everyone again, I got hime though and my ankles have turned into cankles!!! Really swollen and they still are, I’ll have to tell Onc tomorrow as well as my arm, its still so painful from chemo round 2 when the nurse pushed my treatment through to fast 🙄 I’m starting to worry it will affect my job now to be honest. 

Anyway, I’ve just walked the dog and I feel like I’m walking through treacle so I’m similar to you Wolvesgirl with the fatigue side of things, I can’t imagine having the energy to get back in the gym at the minute.  

Never mind, I’m sure we’ll all get there soon xx

 

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Re: August 2019 Chemo Starters


Thank you Wolvesgirl.. sorry to hear your not feeling too great also. I think we’ll all have times when we feel this way.
yes the end of January. I think it’s sounds so far away with it being next year but then I think we’re in December now! 
Having all you ladies here to talk too has helped massively. We’re all going through the same thing and we’re all getting there.

Lisa xxx 

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Re: August 2019 Chemo Starters

Hi Lisalou

 

Sorry to hear you are feeling a bit down - I am too if thats any consolation - feeling a bit floored by side effects of nausea and tiredness which always bring me down and get me worrying about whether I will end up spending the rest of my life on chemo.  I guess its natural and we will get over it but please be aware you are not alone.

 

Imagine being nearly half way!  Well done - is it the end of January for you?  It will soon be here.  I am still waiting for my post chemo appointment with the oncologist who will refer me to radiotherapy - I should have had it between cycles 5 and 6 but am on a waiting list so will give it to the end of this week and then ring them.  

 

Keep your chin up - you are doing a great job!

xxxx

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Re: August 2019 Chemo Starters

 

Thank you Shi 

 

Iv found myself feeling really down and worrying about every little thing the last few days. Not like me at all. Hoping it’s just a build up of everything.

 

hope everyone’s ok. 
Lisa xxx

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Re: August 2019 Chemo Starters

Wolvesgirl 👍👍👍😁😁😁well done you finishing chemo, lisaloo 💃🏻💃🏻🕺🕺💃🏻💃🏻Keep dancing you are not far behind 😁😁 you are amazing 👍💕💕Shi xx

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Re: August 2019 Chemo Starters

 

Hi Wolvesgirl 

 

well done on your last chemo! Hopefully side effects are minimal for you. 
Iv enjoyed reading your reflection on chemo. Everyone’s journey is so very different isn’t it. 
I had cycle number 5 yesterday, next Friday ill be half way! It really has gone quickly.
hope everyone else is ok and enjoys there weekend. 

Lisa xxx 

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Re: August 2019 Chemo Starters

Hi ladies

 

As we draw to the end of this phase of our treatment over the next few weeks and I finished my six cycles yesterday  (being very aware that some of you have more months of IV treatment to go),  I wanted to have a bit of a reflection on the whole chemo experience. I appreciate this is personal to me – not a message that others should do the same as me and not a criticism of those that do things differently.  Some of this was me scoring points against cancer and chemo and refusing to give in so more about my bloody-mindedness.  Just thought it might amuse/inform!

 

Firstly I cannot stress more how incredibly helpful the forum has been and how much I have valued your friendship, both practically and supportively.  As you may remember I nearly stopped after cycle one when I was in hospital but with gentle coaxing from the team and on here have just got through cycle by cycle.  From the days when I first accessed the site to now I have found that it has always provided an answer to something, mostly in the early days when I wanted to know what to buy and have in the house ready to go.  This is a bit about what I have found – in all honesty, I probably got things I didn’t need but as we used to say in the army “any old fool can be unprepared”!  This first bit of my ramblings is about the practical issues we have all faced.

 

Oral Hygiene:No child’s toothbrush for me, I have continued to use my electric toothbrush, floss, interdens and anything else I used to use with no ill effects.  I have also hardly used mouthwash – it tastes too disgusting – but have drunk copious amounts of fizzy water which I think has really helped to keep my mouth clean.  I did spend a fortune on Manuka Honey which I have used sporadically but to be honest cant tolerate the sweetness so it sits in the cupboard and probably wont get used along with the pineapple chunks either!  I didn’t go down the iced lolly route at all. I have not had any issues with my mouth in terms of ulcers or thrush so maybe I have just been lucky.

 

Skin Care:  I have continued to use the shower gels that I have always used with no ill effects on my skin and have also continued to use the skin care products (Elemis) that I have used before.  I have enjoyed facials throughout the process which have really helped me so have been worth doing.  The girl that does my facial said that my skin looks really good but I wonder if that is more to do with the copious amounts of water I am drinking.

 

Hair:  Have cold capped throughout and whilst I did lose most of my hair on the first cycle it has steadily and slowly grown back since. I have followed all the tips re shampoo, washing, conditioning and combing on the forum and think they have really helped.  It looks dreadful but less than it did and I have high hopes that I will be calling my hairdresser to do something to it in January.  I will also be throwing the shampoo and conditioner away as soon as I can – I cant bear the smell and it will always remind me of this time. Other hair hasn’t all gone, still have hairs on my legs (and elsewhere) but not on my arms.  Weird.

 

Nails:  Thank you Blackcat for the recommendation for Evonail.  Have followed the instructions to the letter and my nails probably look as good as they ever have.  I will carry on with that!  Bearing in mind I have only just had my last Docetaxel so could be laughing too early but I think I might have got away with no nail issues.  Toenails are fine too.

 

Alcohol: Hmm!  Clearly have drunk virtually no alcohol during chemo but have enjoyed one glass of wine on a Saturday night at the end of the cycle when on no medication and feeling better – if not the latter I have not had any.  It has been nice to feel normal for a short time though although I have had a bit of heartburn afterwards but not enough to worry about (or stop me)!

 

Water:  Before this experience I rarely drank water except a couple of glasses in the evening and that was never tap water.  I am now a fully fledged water drinker, taking in between 1.5 and two litres a day.  Hope that continues as will my significantly reduced coffee intake as for two weeks out of three it makes me feel sick.  Tea has been OK though.

 

Nausea:  Been my main problem.  For me the anti nausea wrist bands were useless but I do accept that others find them really helpful.  I resorted to drugs – they gave me Emend for the last two cycles of Dox which really helped and I took regular Domperidone for three days after that which broke the back of it. I hate taking medication of any type but when needs must ......  

 

GCSF Injections  Hate them.  I don’t mind actually injecting myself but I am convinced they made me feel worse in terms of nausea, temperature raise and general achiness. I do accept that they are important to increase neutrophils but I wont be sad to see the back of them at all! Probably the thing I have found most unpleasant.

 

This has turned into a long post, so will leave it here as I have more to say which will be for another time!  Have a lovely weekend everyone, looking forward to hearing your news.  I am writing my end of term essay at the moment so will be spending most of the weekend working on that.  With love and best wishes and hoping everyone is feeling OK xxxxx

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Re: August 2019 Chemo Starters

Hiya everyone,

So glad everyone seems to be doing ok and nearing the end now. 
Im now 11 days post final chemo, feeling a lot better now although my skin on my face is dry and sore and my fingernails hurt too. It’s easier to put up with though knowing I don’t have to go through another round!

My mum came to help me with the children this time, (she lives away) I don’t know how I’ve managed without heron the past, she did so much for us!!

Next appointment is 10th dec to see onc Then I think he will refer me to radiotherapy, i really hope they start before Christmas 🤞🤞🤞

We are going to a retirement party tonight and I might have my first glass of wine since June...I’m terrified!!!

I hope everyone can enjoy your weekends even if you are in the midst of chemo side effects....

Nearly there girls 🥳

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Re: August 2019 Chemo Starters

 

Hi Wolvesgirl, Blackcat and everyone else. 

so glad to hear your both doing ok.. and excellent news for you Blackcat i’m so pleased for you!! 
I’v just had cycle number 4 today, the weeks are really flying by and Apart from feeling tired and a few aches and pains Iv been dealing with it ok 🤞🏽🤞🏽 Really enjoying not having that awful woozy head I had with the EC.. I just didn’t feel myself at all looking back but with the paclitaxel i haven’t got that which is good. 

Hope everyone has a lovely weekend. 

Lisa xxx

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Re: August 2019 Chemo Starters

Blackcat, 

 

That is fantastic news - you must be delighted that despite the challenges of going through this treatment it has had such a resounding effect on the tumour.  Whilst I am sure that you would rather not have surgery to do so is the final piece in the jigsaw and I quite understand your dilemma into whether to have reconstruction.  There is something about just getting some normality back that is just as much part of our recovery as the treatments we have gone through or are coming to the end of - although I retired last year I am now thinking that when my PGDip finishes in the summer I might like a day or two working or volunteering again.  I am no longer on the nursing register but could do something else.  I just need to get back with people preferably who don't know I have had cancer.

 

I am so delighted for you - great news to start the weekend with xxxx

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Re: August 2019 Chemo Starters

Afternoon Wolvesgirl and everyone,

 

It’s great to see that so many of us are coming to the end of the chemo journey - it seems no time at all since we were all nervously starting out with our first treatments back in August.  The idea of writing some reflections on the chemo journey is a great one, and I look forward to reading them. 

 

I am on Day 10 following my final chemo session, and am feeling well (having just emerged from the period of bone/muscle pain side effects).  I am glad to have done the last of the filgrastim injections - it felt good to return my sharps box to the hospital yesterday.  

 

I had my post-chemo review appointment with the oncologist yesterday, and received the good news that my tumour and one affected lymph node have had a complete pathological response to the chemo - my MRI scan after Cycle 5 shows that the tumour has completely disappeared, and the lymph node has returned to normal.  There had been shrinkage after the first two cycles of EC, but it seems that the main effect has been caused by the subsequent cycles of herceptin/perjeta/docetaxel.  So although this regime has been quite harsh to tolerate, it has done a very effective job.  

 

I also had an appointment with the surgeon yesterday, and got my date for surgery which is 2 January.  Normally the surgery would have fallen in Christmas week, but the surgeon is on leave then.  Although the tumour has gone, I have titanium markers in which show where it was, and the surgeon still recommends that I have a mastectomy rather than a lumpectomy due to the shape and position of the lesion.  I am happy with that, as it was what I was expecting from the start.  I am having axilliary clearance too due to the fact that one lymph node was affected.  My next challenge is to decide if I want to have reconstruction (immediate or delayed), and if so, what type.  My BCN has booked me a one-hour appointment next week to discuss all the options, and then I will see the surgeon again.   I am finding it difficult to decide what to do, as I have been off work for 6 months now and am desperate to get back to a more normal life in the not too distant future.  Some of the more complex reconstructions (such as a DIEP flap) would involve a three month recovery period, which seems such a long time.  I have been given a lot of material to read on the various options, so will do that over the next few days and try to come to a decision.

 

I hope that everyone is well and will have a good weekend!  Love and good wishes to all on the thread.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Morning fellow August peeps

 

I hope everyone is well on this rare sunny day!  All fine here, am in the final week of the cycle so feel normal and am cracking on with chores before my last cycle on Thursday next week, all being well.  I am supposed to see the consultant before then but have not had an appointment yet so will wait and see.

 

I have started to write down some reflections of the chemo journey I have been on and will post them next week - just to amuse really!  I thought it important to look back over what is a pretty significant time in our lives, to be honest I still can't quite believe we have got as far as we have - in hindsight time seems to have flown although it didnt seem so at the time.  

 

Anyway, have a great weekend everyone, much love xxx

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Re: August 2019 Chemo Starters


Hi Wolvesgirl 

 

Yes the weekly paclitaxel is a lower dose so side effects not as harsh. The same with all the chemo though in that it will effect everyone differently. Iv just been tired and a few aches and pains so far 🤞🏽 Hoping it stays that way! 

big hugs to everyone 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Lisa

 

Well done - another one ticked off the list.  Hope you are feeling OK today - is it right that Pacetaxil is not too bad on the side effects?  Hope that is the case for you.  I agree re the TN thing - I was very positive before starting chemo but the whole process has been so consuming it has been hard not to think about the alternatives but now is the time to start being positive again - this is curable and hopefully we will be in the cured group - thats what we need to hang onto.  

 

Have a good weekend - and everyone else.  Much love

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Re: August 2019 Chemo Starters

 

Hi Ladies 

 

number 3 of paclitaxel today. Was there a bit longer than usual as the poor nurses were rushed off there feet. Feeling ok so far, just tired. Lovely to hear everyone so positive! 💪🏽 I too am TN so always have that little niggle in my head about it coming back.. just keep trying to tell myself that it doesn’t happen to everyone and there’s new research happening every day. 

hope everyone has a lovely weekend. 
Lisa xxx

 

 

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Re: August 2019 Chemo Starters

Julie ❤️ You have a busy few weeks, it’s not unusual for the chemo not to shrink things so glad you are 💪🥊💪 it is a lovely euphoric feeling when you’ve had your last chemo 👍👍 so look forward to that and hope you get go ahead for 27/12 agree with you get out the way in 2019. Sending 👭❤️👭 and lots of Shi xx

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Re: August 2019 Chemo Starters

That's excellent news that the radiographer struggled to find a lump, Lisaloo!  Congratulations - I'm not surprised you're relieved.  I went to see my surgeon this week too but, unfortunately, my lump doesn't appear to have shrunk much, if at all (I've just completed my 5th cycle).  The chemo consultant had said at the beginning she expected the lump to "almost disappear" but as that hasn't happened they're now sending me for another MRI scan in the hope it's mainly made up of scar tissue.  It's a bit of a blow and I'm now trying to get my head round what it might mean.  I'm Triple Positive.

 

My 6th chemo (plus Herceptin + all the other drugs) is due on 28 November - I'm hoping my bloods will be OK so that it doesn't get delayed - and then MRI on 9 December; see surgeon again on 11 December; and then I've been provisionally booked in for the surgery on 27 December.  I initially thought "oh no, between Christmas and New Year" but then decided it would be good to get it done while we're still in 2019.  Then, depending on the operation I have which can't be determined until after the MRI results, highly likely to be followed by radiotherapy.  After that, Herceptin etc for 10 months at 3-weekly intervals.  Phew!  I'm sure I should feel delighted to be coming to the end of the chemo but seeing the surgeon has dulled that for me.  Still, I'm shaking myself down and will "re-positivise" myself over the next few days.

 

Well done everyone else for getting through your latest rounds.  We ARE getting close and we WILL get there.  Hope everyone has great weekends, with or without decent taste buds!  Best wishes to all, Julie xx

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Re: August 2019 Chemo Starters

Hi Mini Mad

 

You are right - you will never know the answer to that question but what is important is that your recurrence has been dealt with and you can move on with your life now.

 

Have a wonderful time - it will just be lovely to be away from this weather!  Pouring with rain here. x

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Re: August 2019 Chemo Starters

Hi Shi,

 

try again...  had a quick read of the link re antihistamines and TNBC

i have had hay fever since i was around 15 every year and have always taken antihist for it.

 

ive also had bc twice and both have been Triple Negative.. unlucky i guess 🤷‍♀️🤷‍♀️
mini mad xx

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Re: August 2019 Chemo Starters

hi Shi,

 

Had a quick read re l

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Re: August 2019 Chemo Starters

There has just been a paper issued about antihistamine and tnbc, https://www.nature.com/articles/s41416-019-0636-x I’ve asked mai7 to put link in tn thread, hope this helps 💕💕Shi xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

yes i also read that TN responds well to chemotherapy.  Fingers crossed 🤞🤞

Maybe if i had decided to have chemo back in 2017,  i MIGHT not have had it recur.

we'll never know..

have a good weekend to you also.

we're off to Fuerterventura next wednesday just for a week... so looking forward to just getting away..
mini mad xx 💖💖

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Re: August 2019 Chemo Starters

Thanks Mini Mad

 

That trial is interesting and I note that phase one testing is due to finish in about a year so they are cracking on with it.  Its not that I don't think there is no more treatment but just that we have less options than the cancers that respond to targeted treatment but also TNBC responds well to chemo (I hope, having gone through all this) and that is what I am clinging to.

 

Have a lovely weekend and thanks for the info

 

 

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Re: August 2019 Chemo Starters

Hi Wolvesgirl    ( intrigued by the name ?? )

 

im also TNBC and have now finished my chemotherapy.

noticed in your post you mentioned there isnt anymore treatment available for us TN ladies once chemo ( and radio ) is finished.

there is a new trial bing tested right now for TN ladies.  It targets the cancer cells and destroys them before they have a chance to split up and divide.

try googling BOS172722 and check out the info.  Mini mad xx 💖💖

 

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Re: August 2019 Chemo Starters

Hi Spottycotty and everyone else

 

Spottycotty, Yes, great to hear everyone so positive at the moment!  We are nearly there.....  Glad to hear that SE not too bad for you at the moment but agree that the injections don't help in the making you feel good stakes.  I finished mine last night - I am only having five whilst on T rather than the seven I had on FEC which is a bonus and I can feel that my bone marrow is working hard this morning so neutrophils must be dropping which is about right for day 8.  I have to say I agree with you about the next stage - I will have an appt with the oncologist before my last cycle on 05 Dec for the referral to radiotherapy which I understand will be 15 + 5 boosts and then when thats done, presumably end January,  I should be starting biphosphonates twice a year.  I had a lumpectomy back in June and nodes out in July when they realised it was cancer not DCIS so the surgeon told me my next mammogram will be around then.  Being TNBC I am a bit nervous as am aware that there are not many options for treatment going forward after this finishes.  It does seem that people have very different regimes doesn't it?  But, I trust them so will go with the flow.  During the days when I have felt ill during chemo I have convinced myself that there will definitely be a recurrence but I have to get out of that mindset I think.  Hope the cheesy scone was good - sounds lovely.  Cheese is one thing that I enjoy whilst taste buds are dodgy.

 

Lisa - you will absolutely walk the surgery and so pleased that you like the surgeon.  Mainly pleased about your response to chemo which is great news.  

 

Blackcat - Hope you are enjoying the immaculate surroundings of your home despite the foul taste in your mouth - btw, thanks for the tip re jelly beans - they do work.  My mouth has been much better this time but things still taste funny - it lasts longer with the T I think.  Again, surgery will be very straightforward I am sure and will be a massive step along the road for you.  Re hair - yes, mine is growing back at a good rate, I didn't lose it all as you did so what was left is now longer and where there was none there is a covering.  As you, mine is the same dark brown (not much grey to be fair) it was before but where my hair was coarse and thick at the moment it is fine and thin.  I would imagine needing the wig for a few weeks yet but I am thinking sometime in January I might be able to get my hairdresser to do something with it.  I have continued to cold cap all the way through and will do for the last one as apparently it does aid regrowth but I am cheered that yours is doing it all on its own.

 

Stay safe everyone and hope that the side effects remain minimal for all. Much love xxxx

 

 

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Re: August 2019 Chemo Starters

Hi everyone,

 

Well everyone is sounding very positive at the moment, I love it!!

 

i had a full nights sleep last night which I’m amazed at and I’m currently still in bed!!! Feel good, this only happened as I mustn’t have suffered many hot sweats last night!!

injections start today though so I know it’s downhill till next week but it’s good to know it’s the last time.

 

my next appt is 10th December to see onc, he will then refer me to radiotherapy. I had my surgery before chemo, just a lumpectomy. Worryingly though I don’t get a scan of any kind at the end of all this!!  I will just get a yearly mammogram 😬

 

Anyway, hope everyone’s week continues to be positive, I’ve got to get up as I’m off out with mum for a warm cheese scone before my taste buds disappear too!!!!

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Re: August 2019 Chemo Starters

 

 

Hi Blackcat and everyone else.

 

well done on your last one yesterday!! 😃😃 hope the side effects are kind to you! 😘 

I went for an ultrasound scan on Tuesday and to meet the surgeon. I am so relieved that the chemo is doing what it should and the radiographer actually struggled to find any lump as it’s gone that small 😃😃 first time Iv met the surgeon and what a lovely lady she is. All the nurses Iv spoken to along the way have said how lovely she is and excellent at what she does. Meeting her has really put my mind at ease about the surgery part. 
hope everyone is ok.

 

Lisa xxx

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Re: August 2019 Chemo Starters

Black cat 👍😁👍👏👏🛎🛎well done ❤️ Your tea sounded lovely glad you enjoyed 😋 hair does grow back on t and if you have a downy face, leave it, it does settle down 😘 the op is a doddle after chemo, you will be amazed how quick your body recovers 👍 ❤️💕💕Shi xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl (and all on the thread),

 

Thanks so much for your good wishes.  I had my final chemo session today, so have my last load of docetaxel on board and will now just have to deal with the last lot of side effects.   I will continue with the antibody infusions (herceptin/perjeta) every three weeks for 14 more cycles, the first one being on 16 December).  When I got my new appointment card today, I saw that I have now been moved to the non-chemo clinic, which has shorter appointment slots (max 1.5 hours) and no paperwork to fill in (previously I had to complete a spreadsheet of chemo side effects for each cycle).  So it does feel as if I have reached a small milestone on the treatment journey.  

 

The next big milestone will be preparing for surgery in December, and I will have an appointment with the surgeon on 28 November to discuss options.  I was told at the start that the most likely option is a mastectomy, due to the location and shape of the tumour, so that is what I’m expecting (although I have had two breast MRIs - one after the first two chemo cycles of EC, and one after the next three chemo cycles of her/per/docetaxel - and the results of these will be fed into the MDT to determine the surgery options).  I know from the first MRI that the EC caused a reduction in the tumour, and although I don’t yet have the results of the second MRI, I can observe that the her/per/docetaxel have definitely softened the tumour, which previously was a hard area to the touch, but which I now can’t actually feel.  I will get the results from the second MRI on the 28th, and will find out what the surgeon recommends, and hopefully also a date for the surgery (which might well be Christmas week, as I was originally told it would be about 4 weeks after the last chemo).  

 

Due to the lack of sleep last night caused by the mega dose of steroids, my house is now extremely clean and I even managed to wrap quite a few Christmas presents.  The steroids have given my tastebuds a reprieve from the foul mouth taste, so I have just cooked and eaten a lovely meal (roast chicken with lots of vegetables, followed by fresh pineapple with cream then crackers and cheese).  No doubt my extra calories from tonight will be balanced out by the lean days to come when the docetaxel hits my mouth and digestive system (but at least it will be for the last time).

 

Has anyone else on taxane chemo noticed that their hair is growing back?  I lost all my hair during my first cycle of EC, but I started getting a bit of downy hair sprouting once I started on the her/per/docetaxel.  Now I have noticeable hair growing back all over my head, in the same chestnut brown colour it was before, but it seems to be a coming through slightly curly (as far as I can tell, as the little hairs are only about 6mm so far!).  It is nice to run your hand over your head and feel some hair rather then being as bald as an egg, even though I will obviously have to keep wearing my wig for a long time yet.  

 

I hope that everyone who has just had a treatment is doing well, and that any side effects are mild.  Love and hugs to all on the thread.

 

Blackcat xx

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Re: August 2019 Chemo Starters

👏👏👏🛎🛎🛎🛎🛎💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻🕺🕺🕺Aug thread are whoooop whhoooppp finishing chemo 👍👍👍😁😁😁enjoy it 😁😁😁💕💕💕Shi xx

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Re: August 2019 Chemo Starters

Hi Blackcat,


Just want to say all the best for your last chemo tomorrow- your last Docetaxil!  Bet you are thrilled you won’t need to have to put up with the awful taste changes any more after the next couple of weeks. 

Hope the house cleaning is going well - the steroid highs are an interesting experience to say the least!

 

take care and let us know how you get on xx

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Re: August 2019 Chemo Starters

Hi Spottycotty,

 

I hope that all went well with your final treatment today - it’s wonderful that you have got to the end of the chemo journey!  I hope that any side effects are minimal, or preferably non-existent.  Hopefully the psychological effect of knowing that this is the last cycle will help. My last one of the docetaxel/herceptin/perjeta is tomorrow (had bloods done today, so fingers crossed they are OK), so that will also be the final one of the six chemo cycles for me.  I will still have to have 14 three-weekly infusions of herceptin/perjeta over the next few months, but thankfully this is not chemo and so does not involve being immune-suppressed.

 

I am on pre-treatment high-dose steroids tonight and so am about to demolish the entire contents of the fridge (plus probably clean the whole house later, as I have four more steroids still to take and will likely be too wired to sleep). Isn’t it strange how the treatments affect our appetite and energy?  A few days ago the docetaxel foul mouth taste, warped tastebuds and dodgy digestive side effects were putting me off eating, but tonight my tastebuds are temporarily back to normal and I am ravenous, so I am going to make the most of it.  I hope that everyone has a good evening, and send hugs to all on the thread. 

 

Blackcat xx

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Re: August 2019 Chemo Starters

Go Spottycotty - well done!  Hope all goes well for you today. I think it’s Blackcats last one this week too.  Nearly there girls - will stick together until we are all done!  Just in side effects week here but not too bad - managing nausea much better which is making a difference. xx

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Re: August 2019 Chemo Starters

 
Whooo hoooo 💪🏽😃 @spottycotty you’ve done it! Hope your last one goes ok today and the side effects are minimal for you.

 

Lisa xxx

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Re: August 2019 Chemo Starters

Last one tomorrow ladies 👏👏👏