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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

Hi Spinks,

 

ive fasted on all 3 cycles of EC so far. 

Hard to know if it works as no real way of comparing to how I would be not fasting.

 

For the same reason, I wouldn’t not fast now for fear it might make SEs worse. 

All I can say is that my oncologist said that anecdotally (he wasnt actively recommending it) he was getting good reports from ladies that did fast, regarding their tolerance of SEs.

 

From my point of view, so far I can say I’ve not  experienced nausea beyond overnight of day 1, and apart from big tiredness early in cycle, I’m coping touch wood. No unpleasant infections so far 🤞. Again no idea if this is at all related to fasting or would have happened anyway. And no idea how this actually compares to the severity of other people’s SEs who aren’t fasting. 

It’s the steroid withdrawal that I’ve found hardest to cope with so am experimenting again this cycle with tailing off a much lower dose for longer. 

i don’t know what you’d thought of in terms of fasting duration, but I fast from Tuesday evening - have chemo infusion on Thursday morning and then break the fast on Friday morning. This equates roughly to 36 hours beforehand and 24 after. 

 

Good luck Spinks, whatever you decide to do! 

X

 

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Re: December 2019 Chemo Starters

Hello ladies.....just checking in on you all and how everyone coped over the weekend...….for any of you that are struggling with jumpy legs that wake you up during the steroid days I have taken quinine sulphate the Dr gave me which has really helped...wishing you all love......Debbie x

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Re: December 2019 Chemo Starters

Hello everyone, 

 

Has anyone tried fasting before and after chemo to help with nausea? Did it work?!

 

Thanks

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Re: December 2019 Chemo Starters

Thanks B4!

Rizzer, my 💩 emoji has never had such a workout since I started this malarkey.

Roll with it we must! 

Love and positivity to you all x

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Re: December 2019 Chemo Starters

I definitely feel we haven’t been using enough poo emojis on this forum, so thanks for that Mrs 1968... especially given how that’s the word (and other ones with quite similar meanings) I’ve been using most when describing chemotherapy to other people! Sad we have to go thru’ it, but as you say hope it’s going to keep us all sticking around. Lots of love X

 

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B4
Member

Re: December 2019 Chemo Starters

Me too Livers...

 

XX

 

B4

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Re: December 2019 Chemo Starters

MrsS1968......As my mother used to say “it’s just a phase, roll with it and you’ll come out the other side, fight it and it’ll be harder” - this was her stock answer to everything!  So I’m just rolling along!

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B4
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Re: December 2019 Chemo Starters

Thats great Mrs S... EC finished, we are all nearly there.... 

Sending you all my good wishes and hugs!

 

B4

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Re: December 2019 Chemo Starters

Thanks mini-mad! Shame about the biscuits and cake  😉Xx

 

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Re: December 2019 Chemo Starters

Hi Rizzer,

 

i also had a kinda sharp gnawing pain in my stomach.

what helped me was eating little and often  ( not an excuse to pig out n cake n biscuits )

just a suggestion.   Mini mad xx 💖💖

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Re: December 2019 Chemo Starters

Hi Rizzer,

i also had ak

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Re: December 2019 Chemo Starters

Livers so sorry to hear you have been so unwell on EC. I have had some nausea, fatigue and the awful side effects from filgrastim injections.

I hope the next phase is better for you. I just cling on to the fact that there is an end to this and it all increases our odds. Not much else to cling to when you feel like 💩

Keep being kind to yourselves x

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Re: December 2019 Chemo Starters

Hi Mrs1968,

glad you are also through the dreaded EC.  Good luck with the Paclitaxel.

 

Lynne 💪💕

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Re: December 2019 Chemo Starters

Hi B4, it’s Docetaxel next for me next by 3 rounds every 3 weeks.  I also start Herceptin injections by 18 rounds every 3 weeks.  So glad to be finished EC, I was so sick on it!  

 

Hope you’re doing well 💪💕

 

Lynne

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Re: December 2019 Chemo Starters

Livers I also ticked off my last EC on Thursday and move to paclitaxel on the 20th for 9-12 weeks depending how I tolerate it. They say it's better tolerated as they give it to 80yos.

 

Ladies on 'roids, I took a temazapam last night and had a brilliant sleep. Might be worth asking for some.

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B4
Member

Re: December 2019 Chemo Starters

hi Rizzer,

 

Sending you Love and best wishes for your side effects to settle soon.

Its not easy being a woman, but I guess we can do it way better.

 

Hugs 

 

B4

 

 

 

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B4
Member

Re: December 2019 Chemo Starters

Hi Adelmck,

 

I hope you start feeling well soon. Please do talk to your oncology services/ team- about the swollen arm, if the Lymph nodes were removed then it could possibly be Lymphedema but it is for them to make the diagnosis. I had edema on the arm where my PICCS line was inserted and the dopplers scan showed thrombosis.

Sending you loads of best wishes and Hugs

 

B4

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B4
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Re: December 2019 Chemo Starters

Hi all awesome & wonderful ladies,

 

I am so please today I had my 4th Paclitaxel via my portacath and did not have much pain..... ye... (will get there eventually 8 more to go). Crossed off the date today and felt good.

Also Mrs S and Rizzer- I did talk to my Oncologist friend and he is not bothered, so Turmeric has (I think) not harmed me. Anyway not taking it now... Think it might have contributed to my heart burns as well!

 

Good nite to all lovely, beautiful and very brave ladies!

 

B4

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B4
Member

Re: December 2019 Chemo Starters

Ye Livers!

 

So pleased for you that you are through EC... thats a milestone achievement for us ladies..

I hope rest of the chemo will be better tolerated.

Will you be starting Paclitaxel or Docetaxel?

 

Please take care, with best wishes!

 

B4

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Re: December 2019 Chemo Starters

Adelmek please watch the swelling and check with your unit, keep safe ❤️😘💕💕✨✨shi xx

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Re: December 2019 Chemo Starters

Hi everyone, how are we all this evening - I woke in the middle of the night worried if my syringes in the fridge! Chemo brain - bit naseous last night and woke with a swollen left hand this morning on my surgery side ( My chemo always has to be done on opposite side)  managed a little nap this afternoon 😊 hope everyone has a good a weekend as possible Adele x

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Re: December 2019 Chemo Starters

Hi Rizzer

We are on the same day. I was wide awake last night 11.30pm to 1.30am. Definitely taking a temazapam tonight. Tired today

Horrible nausea last night but slightly less today x

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Re: December 2019 Chemo Starters

Glad you’re halfway there Livers! Herceptin injections doesn’t sound much fun, but pleased to hear you’re not feeling too awful day 3 - and no more EC! X

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Re: December 2019 Chemo Starters

Day 3 following last EC, not feeling too bad just the muzzy head and some nauseousness, but not as bad as previously.  Start Herceptin injections on 18th (18 rounds) and T on 19th Feb.  Halfway there on chemo!

 

Lynne x

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Re: December 2019 Chemo Starters

Hey all,

 

Last night felt like I had a combination of a hangover and sunstroke! Not much sleep was had! 

 

Day 2 and definitely got crashing fatigue and constantly like I have a gnawing -almost sickness but not quite - in my tummy. Like I should eat, but it doesn’t actually help. 


Over extended myself by having a lovely breakfast with a friend, but by the drive home I felt like I could barely lift my head or move my body. 

Had one job to do after chemo (well apart from picking kids up and making tea etc) put my flipping syringe of stuff in the fridge when I got home. Forgot obviously. Checked with chemo nurses this morning that I didn’t need to come and get a replacement. Thank goodness. Think I might have burst into tears.

 

How is everyone else doing?

 

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Re: December 2019 Chemo Starters

Hi Adelemck 

How are you feeling today? Well done: let's ring that halfway bell!! 🛎

Xxx

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Re: December 2019 Chemo Starters

Hi Lady34

Yes, trying to think about such big issues would be a daunting task even without cancer being the trigger, and like you say, feeling tired and not mentally able to consider those aspects of the future renders the whole thing impossible.

You'll be having T just ahead of me - I'm 10 Feb. I didn't have some of the side effects I thought I might from FEC so I'm trying to go in with an open mind. They're doing this day after day across the country and there won't be anything they haven't been asked about. 

xx

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Re: December 2019 Chemo Starters

Hey rizzer, I feel like I'm living that very curse - but I can think of other 'interesting times' I'd prefer to be having! (Wouldn't we all...)

You're right; it's not just about what we've lost, but also about how to become the new 'us'. That feels quite unknowable and rather daunting (although that could be because time feels like it's stopped for the duration), but at some point we will feel more positive about thinking about it...well, I've been trying to tell myself that this week!

Thanks for saying that about the admission. It all took much longer this time (all night) as it was out of hours and so I had to go through a mini A and E unit rather than be directed straight to the chemo ward.

(Note to us all: make sure your temperature only goes up during the day!)

That certainly didn't help and things are always worse when you've been up all night...

Been out today in one of my borrowed wigs. Trust me to do it on a windy day! I kept my hat on to give me confidence but let myself get talked into a pub lunch and took it off. No-one batted an eyelid, so I might have another go when the wind dies down.

xx

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Re: December 2019 Chemo Starters

Morning ladies hope all with treatment are managing. I’m one whose having T on 7th Feb ive had 3 FEC Reading here about new side effects. My attitude is one of a lamb to slaughter. I have taken this route signed an agreement so chose this whatever the side effects are I’ll have to manage it. 

 

This possibly poisonous derivative of the yew tree has been used for 20 years now to target Tumours so all I feel I can do is let it do its work. 

 

Madcatlady and rizzer how how can we feel at home with the new diagnosed us? It’s not a person we’ve known for long. It’s a new part of us that we’ve just met and have to get to know!

Alienation is exactly how we can expect to feel because we are now different in many ways. Our life has been interrupted, put on hold awaiting an outcome some of which we know about the rest is the unknown! 

 

Rizzer I’m in a similar mind space to you. 

 

The life we’ve lived so far was without this new threat. This threat may limit our lifetime so puts us under a microscope in a way to see that we do what we want with out lifetime and not waste time or be stuck where we don’t want to be. 

 

Trouble for me is the side effects make me feel tired imbalanced and not mentally clear enough to make any decisions. So I’m putting it on hold. 

 

For now now the most I can do is get through this treatment. 

 

Sending love strength and hugs hugs to all 

💕🙏🏽💕🌲💕🙏🏽💕🌲💕🙏🏽💕🌲💕🙏🏽

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Re: December 2019 Chemo Starters

Sorry, just to add madcatlady... a lot of it feels like I’m struggling with, if/when I get through this and ‘normal’ life resumes... How do I want to live with hopefully the long time I have, what do I want start doing more of etc, what do I not want to keep doing? So that relates to the idea you were talking about - I.e of this cancer forcing us in to a bit of an identity crisis..

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Re: December 2019 Chemo Starters

Yes madcatlady, it seems a bit like the Chinese curse ‘may you live in interesting times’! Thanks for responding. I’m sorry to hear you felt like that waiting to be admitted to hospital. I really feel for you. That must have been horrible. I’ve not had that specific experience, but I understand what it’s like to try to explain these feelings, and however much people around you love you and want to help, there’s a gulf between you and them. Can be exhausting and exactly as you said, alienating when you so very much need to feel close to and understood by others.

Blimmin’ tinnitus doesn’t help 😂 X 

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Re: December 2019 Chemo Starters

Thanks mini mad. That is very reassuring 🤞

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Re: December 2019 Chemo Starters

Sending lots of love for tomorrow, B4

xx

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Re: December 2019 Chemo Starters

Oh rizzer, I know what you mean...don't worry if it's steroid induced but it does makes sense.

When I was waiting to be admitted to hospital in the early hours of Saturday I just felt so alienated and not me, but I couldn't explain it to my husband at all. I don't look like me, or feel like me, and my reactions aren't those of the normal me, and how people react to me is different.

I can only assume it is about identity at root and how we're changing in what feels like an uncontrollable and unknown way and cannot predict anything about ourselves at the moment.

On a less esoteric level I have tinnitus anyway, but at the moment I feel like I've got a range of brass bands rehearsing for a national competition on my head...the chemo worsens it and then the GCSF injections join in.

Well, it keeps life interesting! 

xx

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Re: December 2019 Chemo Starters

Hi everyone, 

I am banned from google - makes me paranoid! Often the info is out of date and tend to err on the negative.

Had my third EC today - did a little half way there jig! 

Nervous about the Docetaxel but it's got to be done! 

Hope everyone doing ok today 😊

Adele x

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Re: December 2019 Chemo Starters

Hi there MrsS1968

 

i had Paclitaxel every week for 12 weeks and it was definately doable..

good luck.  Mini mad xx 💖💖

 

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Re: December 2019 Chemo Starters

B4 this process definitely messes with your head. Lay off Google- it's full of rubbish x

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Re: December 2019 Chemo Starters

Oh B4 - huge hug...

We are with you lady. 
Things I’ve googled would make people without cancer think I was insane!
Sometimes the temptation is too great, when we’re trying to make sense of all this rubbish and take a bit of control back. 
Be kind to yourself about that X

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B4
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Re: December 2019 Chemo Starters

Thanks Mrs S,

 

For the first time I have known the negativity of mind power, usually I am quite a positive person. 

 

However since my diagnosis I have become a bit suspicious, trying mindfulness/ meditation/ Yoga (pranayam).. nothing helps long term.

I am in process of talking to an oncologist friend again (I am sure he will block me soon)... ..

Why do we google????

That was my insecurity which I have shared with all my cancer sisters (sorry getting emotional).

 

XX

B4

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Re: December 2019 Chemo Starters

Rizzer- it is lovely around here.

B4 I just don't think there is enough research on alternative therapies so no one really knows what is best. I would go with what your oncologist says. If there was evidence that it had a hugely negative effect on the chemo he/ she would know about it x

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B4
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Re: December 2019 Chemo Starters

Mrs S- Im having it in Guys... but please do stick to whatever treatment they are giving you (which I am sure you will), as with chemotherapy things are very different. I was taking turmeric since my diagnosis, now Google aunty tells me that it makes EC less effective which is quite scary. I had asked my oncologist about it who said that its OK.....

 

Now that makes me quite stressed!

 

B4

 

 

 

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Re: December 2019 Chemo Starters

Yeah, I’m sure it all adds up to the same thing...I hope! 

Used to visit my Nan in Welwyn Garden City. Many lovely memories of that neck of the woods Mrs S! x

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Re: December 2019 Chemo Starters

B4 I am in Letchworth, Hertfordshire. I think they all have their own variations on a theme with these protocols. I nearly died when I saw it! I am NOT good without sleep x

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B4
Member

Re: December 2019 Chemo Starters

Thanks Rizzer,

 

Is there anyone else have their chemo tomorrow??

 

XX

 

B4

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B4
Member

Re: December 2019 Chemo Starters

With Paclitaxel, I get only one inj 8 mgs Dexamethasone intravenously (in the drip), prior to the Paclitaxel.  I'm based in London and nearly same age as you are (1969 born).

Where are you based? May be that is their protocol... anyway you will have lot of positive feel good vibes with steroids.

 

XX

B4

 

 

 

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Re: December 2019 Chemo Starters

I am dreading it!!! Will have to replenish my temazepam supplies!

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Re: December 2019 Chemo Starters

Blimey that sounds like a lot of steroids 😬. Well at least you can write that novel while everyone else is 💤 X

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Re: December 2019 Chemo Starters

Thanks B4 that is reassuring to hear. I will also be having radiotherapy when I finish chemo but not sure for how long.

Rizzer I feel light headed after EC but no tinnitus. That must be frustrating.

Pre paclitaxel they have given me 8mg of steroids twice daily to start the day before and continue for 3 days- double what I have with EC. I might be bouncing off the walls!!!

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Re: December 2019 Chemo Starters

Good luck with your 4th tomorrow B4 🤞🤞

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Re: December 2019 Chemo Starters

Hey Fiona! Good to hear from you. So am I reading right that you’re done with EC too? Really pleased for you (I know you may have some crap times to come in the next few days - I’m with you on that). I appreciate you may not feel like celebrating yet...

 

Does anyone else get awful tinnitus after their infusion? My head is ringing like a whotsit...

Madcatlady, good on you for ‘experimenting’ with a different wig style to your usual hair. Feels like we’re changing in all sorts of ways we couldn’t have known beforehand. 

 

I was talking to someone about the experience of going somewhere where people didn’t know me, and meeting new people.

 

Before, I’d been saying that cancer had knocked my social confidence, but I’m thinking, actually when I walk in to that room looking like I do, it’s more because I feel don’t know WHO I am anymore, because everything feels like it’s changing. That’s what’s unsettling. 

 

Does that make any sense to anyone else?(Anyone who has the time, energy or inclination to consider my steroid-induced thoughts - I appreciate that may be no-one!)

 

Anyway, putting it out there...

X