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June 2020 chemo starters

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Re: June 2020 chemo starters

Sorry forgot to say, although my eyebrows and lashes have thinned they are still there. Eyebrows are the best I have ever had them and my husbands says he seems to think my hair is growing back on Docetaxel at the back in my crown xxx

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Re: June 2020 chemo starters

Hi ladies, hope all is as well as can be. Wanted to give a quick update. As I said I had first round of Docetaxel on last Thursday , went smoothly with minimal side effects until Tuesday morning. My eldest felt poorly so woke me up at 4:30am to ask me to lie with him. I went and lay with him and do you think I could get back to sleep? I started to get the most terrible heart burn so took a lansoprazole at 5:30 and continue to read surviving triple negative breast cancer until 6:30. The heart burn would not ease and I found it better to sit  up so went and sat in the recliner downstairs. I then noticed that my mouth felt really dry and I had a **bleep**e film on my tongue, quick call to the hotline and antibiotics were prescribed! I found it hard to rest all day. I was not in pain or achy but could not get comfy. It was like I was looking in from outside my body. No temp though so all good.
I did not sleep again at all Tuesday night, had a little doze for 10 minutes yesterday afternoon and finally managed to get to sleep at 10 last night. Slept right through til 7:15 this morning.

 I have to say that I think Docetaxel is easier in terms of you don’t have the sickness or nausea feeling, however it completely takes your taste buds. It also makes me feel so exhausted like someone is dragging me down, however it is not painful. Strange really like when you have gone past being tired and are frustrated because you can’t seem to do anything to settle and rest. 

 I had the steriods to take 4 times a day for 3 days starting the day before chemo. They are great and have stopped me from feeling sick. I know I have had heart burn but think that is more to do with eating spicer food as I just can’t taste anything. 

 Hope this helps as it really is not too bad!

 Have a lovely day all in the sunshine 🌞  lots of love 💕 Tara xxx

 

 

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Re: June 2020 chemo starters

Hi Anna & Jo, I hope this helps, I have had two Docetaxel infusions with two more to come, I take steroids the day before for 3 days and so far they have worked, I do feel tired, still have some eyebrows and eye lashes, have not had any problem with sickness, my food tastes funny, my stomach is non too keen, I get a very upset stomach and take "Loperamide" otherwise known as "Imodium" which works a treat and is much cheaper to buy. I don't find it as toxic as EC, I seem to have avoided the muscle aches thank goodness and I am lucky, I see a oncologist between every infusion.  It could be worse and from the sounds of it possibly better than FEC?  My next infusion is in a weeks time.

Keep your chin up girls, will be thinking of you both.

 

Love aNN

 

 

 

 

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Re: June 2020 chemo starters

Thanks for that Polybalm recommendation, Cubot! Will look it up in readiness. 

Does Docetaxel have any further impact on eyelashes /eyebrows? My lower lashes are pretty much gone but holding on to upper lashes and eyebrows are thinner but still there. Suppose the three cycles of Docetaxel may affect what’s left. 

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Re: June 2020 chemo starters

Hi Jo,

I’m so interested to hear your feedback from the Docetaxel as I am slightly dreading the change of drugs next cycle, after 3xFEC. I’m glad you’ve no heavy side effects yet and it’s good going that you’ve got from Fri to Tuesday without being completely miserable. Because the doctors have given me extra steroids to start 24 hours before the Docetaxel (round 4 for me is Sept 2nd) I reckon they expect your body takes a beating and that makes me a little nervous! 

Like you mentioned, I’ve found the nausea/vomiting during FEC really wearing. How long did you find the symptoms lasted?  It feels like all my symptoms are concentrated in the stomach. In the first week I feel wretched and just drag myself through the week, spending lots of time in bed. I bet I sound a complete wimp, it does go against the grain. Even a variety of anti nausea meds don't seem to hit the spot although they do help control the vomiting. Usually for me it turns a point after a week and it’s more bearable but still nausea present and I can’t eat my normal diet - chemo in my body just hates fruit and veg, it seems - which is a shame since I was going great guns with lots of plant based meals after surgery! 

Did you see a doctor before you switched to Docetaxel, Jo? My hospital has been doing phone reviews on the morning of treatment day, but they want to see me face to face before the next one. Consent forms I reckon 😉 

 

Anna

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Re: June 2020 chemo starters

Hi ladies , I hope things are going well for you all . I hope things get easier Tara for you , how awful  !

I had my first T...Docetaxel on Friday , no awful effects as yet apart from Very hot flushes the first 24 hours and a furry /dry tongue, which I use Biotene mouth wash and Tongue gel, and a slight loss of taste . No nausea  which is great as I felt dreadful after FEC !

i was told that 70-80% get Quite lethargic And bones aches from Docetaxel , fingers crossed it’s not happened to me yet ! X

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Re: June 2020 chemo starters

Btw, so none of you worry, abscesses are just something that I've been lucky enough to have been prone to over the years when stressed. It's not a chemo thing, definitely A level related. Good luck if any of you have got kids with GCSE results this week. 

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Re: June 2020 chemo starters

Hi Cubot, 

Your symptoms from your latest chemo sound not nice, to say the least. I'm glad it's clearing up. Are you on 2 week cycles? I start 12 weekly cycles of paclitaxel on 7th September. The weekly cycle are meant to be more tolerable than 2 weekly but I'm worried it's going to be fairly relentless. At least with the 3 week EC cycles have felt like I've had 2 weeks off each time. Am just coming out of days 4-8 of my last EC. EC combined with my eldest's A level results produced the most enormous abscess on my bottom so I've also been on antibiotics and Glow Up. I finished series 2 on Sunday so will be in desperate need of TV recommendations for 7th September. Hopefully the Autumn TV schedule will have started then and hopefully enough new stuff was shot for it pre lockdown. I hope everyone else is doing well. Tabs

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Re: June 2020 chemo starters

Oral thrush quite common during chemo 🙄 glad you got antibiotics, fluconzole is also one they prescribe. Ask for it in your goody bag so at first signs of it you are armed and prepared if it happens again 💕💕Shi xx

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Re: June 2020 chemo starters

Hi Tara hope you're doing OK and Michelle, cross fingers for tomorrow! 

So I'm 10 days into docetaxel (with pertuzumab and trastuzumab) now. I've found it quite different to FEC in that I am so, so tired and unlike with FEC that doesn't seem to be getting better as the days pass. Been quite difficult to adjust but i've worked out that any activity bursts needs to be followed by a rest (in my case lying on my bed watching the second season of Glow Up on Netflix!) and that's helped. 

Also had my first bout of oral thrush (mmm lovely). It wasn't what I expected - I thought I'd burnt my tongue as I had several inflamed tastebuds which at first looked like normal inflamed tastebuds which I've occasionally had in the past. Then they grew and looked pus filled (so delightful) and the rest of my tongue hurt A LOT. Good news is I called the hospital and they gave me some Nystatin which has been very effective so two days after the worst symptoms my tongue is almost back to normal. Thought I'd share as my oral thrush looked nothing like the horrific cases you see when you google so you might not realise what you've got, though hopefully you won't get it! 

xx

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Re: June 2020 chemo starters

Hi aNN

Thank you for your kind words! 
Bloods tomorrow and oncologist, I’m just hoping everything is ok for the go ahead!! 
I must remember to take the steroids tomorrow 😀

Michelle x

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Re: June 2020 chemo starters

Hi Michelle, will be thinking of you, it makes for a very long day and a half, I spent my time watching Judge Judy and eating, hope it goes well for you.  love aNN

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Re: June 2020 chemo starters

Hi ladies, I got back from my treatment about 3. No reactions which was great. Worrying fir nothing again! I appreciate all of your advice, it really helped.

 I felt sick when walking out of the hospital, ran to t try he loo and did a big burp and it went off as quick as it came on thankfully no sick. I felt really tired when I got home do had a couple of hours sleep. Mum had to cone around and cook for Adam and the boys and showers the kids , because Adan fell down the ladders cleaning windows yesterday and damaged the ligaments in his foot. He has a boot and is on crutches. It’s a nightmare lol. Mum is sleeping over tomorrow to help out, bless her 💓  

 I felt really hungry when I woke up do had some dinner and are now bracing myself for the side effects to come.

 Hope everyone is doing okay.

 Thanks for the support.

 Take care all

 lots of love 💕 Tara xxx

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Re: June 2020 chemo starters

Hi all

I hope every one is as well as could be. 

Tara i hope your treatment has gone well, ive been sending positive thoughts your way today!!!

I have  Docetaxel next Wednesday and Ttastuzumab, Pertuzumab the following day. Im also dreading the change in treatment from EC. 

 

Michelle

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Re: June 2020 chemo starters

Hi Tara, thinking of you today, hopefully it was not as worrying as expected.  Love aNN

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Re: June 2020 chemo starters

Hi All,

Thinking of you today Tara. I’m sure you’ll be fine.

Its a bit cooler here today which is nice. I’ve not been managing to walk as much because the heat was just too much but hopefully I should manage 3miles today with the dogs.

I had my third EC last week so 3 more to go now. Great to be halfway through but October still seems a long way off! 

Love to all xx

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Re: June 2020 chemo starters

Hi girls, Tara and Cubot, thanks for the tip about the nail cream, I will look at that but I am half way through my Docetaxel so not sure if I have left it too late already.  Tara, no sickness at all so one less thing to worry about, will be thinking of you.  We are all getting close now, keep you heads up girls and if you feel your crown slipping, remember the thousands that have gone before us.

 

Love aNN

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Re: June 2020 chemo starters

Hi ladies,

Thanks for the advice Ann, did Docetaxel make you sick? FEC madd me feel really sick but not actually sick. Also do you have the injections to boost white blood cells?

 I am such a baby being scared. My mum just said you are nearly there now get a grip! She is right. I have radiotherapy after 3 cycles of T too. Then hopefully an uplift to my good breast.

 I woke in the night with terrible cramp in my leg. It feels like I have pulled a muscle now. Don’t think the heat is helping!

 Hope everyone is okay today.

 Lots of love 💕 Tara xxx

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Re: June 2020 chemo starters

Hello everyone and sorry for long radio silence. I hope everyone is doing well 😊 especially in this heat which is not exactly ideal for coping with chemo flushes etc!

I wanted to let anyone know who's having docetaxel soon that I had my first cycle last Thursday and it went smoothly (I'm on FEC-TPH). I was a bit worried about the potential for allergic reactions but the nurses talked me through it and were very reassuring that whatever happens it's easily treatable there and then with piriton and hydrocortisone. Obviously everyone is different but I know after getting 'used' to FEC I was nervous about docetaxel being worse, so it's a relief that the side effects for me haven't been that bad (no sickness, some constipation, slightly painful stomach, headache, sensitive tongue and throat), in case that's reassuring!

My chemo nurse also told me about Polybalm http://polybalm.com/ which is specifically designed (and tested through clinical trials) for nails while you're having chemo, particularly taxane based chemo like docetaxel. It's designed to stop your nails deteriorating/falling off which is a common side effect and - though I'm quite enjoying having no hair in this weather - I am very keen to keep my nails! I've just bought some (arrived in about 4 working days) and put it on for the first time; if nothing else it smells lovely!  I hadn't heard of it from anyone else so wanted to share here in case anyone else wants to give it a go. It's £37 so not cheap but I reckon that's worth it for your finger and toenails!

Thinking of you all 😍 xx

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Re: June 2020 chemo starters

Good luck Cecilia  with your last chemo.  Iv got 3 more to go. I started paxitacil last week  but  unfortunately it didnt like me and I had a reaction to it on ward.  So they now going to move me bk to 3 weekly chemo and give me a different drug as well as the Carboplatin I was having as well.  Hope you get a rest or break before you have to start anh think else. Xxx

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Re: June 2020 chemo starters

Hi Girls, nice to hear your news, well done Cecelia for finishing, you must be the first, I have 2 more infusions then my op then radiotherapy.  Tara, will be thinking of you Thursday, it is always worrying changing to something new but the steroids should control any reaction you might have, ps Docetaxel is also known as T, I was advised to take my steriods before 3pm as they could affect you sleeping, lets hope this weather breask soon.

 

Love aNN

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Re: June 2020 chemo starters

Hi Cecilia,

 Thank you for the reply. I called the unit and was told to take 4 after my breakfast and take the other 4 with me to have at lunch time. I am so nervous, start making myself ill.

 Well done you on getting to the end of your chemo. How many cycles did you have?

  I can’t wait to be at the end of mine. Roll on next year I really want a holiday 😝  

 hope everyone is okay!

 Love Tara xxx

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Re: June 2020 chemo starters

Hi Tara

The chemo drug I was Prescribe is paclitaxel and the nurse always gives me Steroids on the day just before the chemo treatment starts 

I did not have any mouth also I have been using Sensodyne toothpaste and soft toothbrush And when he seems less I was going to get a mouth ulcer I wash my mouth with salted water 

hope all is well with everyone 

have any of you lovely ladies finished your chemotherapy treatments yet?
and what is the plan for moving forward 

my last is tomorrow 
My is to continue with Herceptin for at least a year and this will be taking every three weeks as an injection 

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Re: June 2020 chemo starters

I think they are just trialing it for now . 

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Re: June 2020 chemo starters

Hi Jill,

 Thanks for letting me know. I remember now seeing something that mentioned what you have said. Sorry chemo brain is not helping me remember things. Think it is good in some ways, however people that require an answer

to a question right away may struggle with the new process. I don’t mind either way.

 Love Tara xxx

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Re: June 2020 chemo starters

ttyler - the default notification settings have been changed on the forum to " daily digest " ,unless you go into my settings, notification settings and tick the box to always be alerted to new posts you will just get a summary .They are trying it to see if it works better as some people were being overwhelmed by notifications .

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Re: June 2020 chemo starters

Hi ladies,

sorry for the late reply. My phone does not seem to alert me now when someone adds a new post it waits until the end of the day and sends me an update of all posts for that day. Is this the same for everyone else?

 Tabs I have corsodyl mouth wash. Not sure I have spelt it correctly. I use it twice a day after brushing. Was not sure if I should do this or if I should wait til I get the ulcers and then use. Don’t really want to get ulcers, especially in my throat which is what my bcn said could happen Horrible side effects.

 My dentist has told me to brush twice a day after eating and not to use the mouth wash straight after brushing. He said to use it at different tunes in the day. He also said should I get an infection he will Perscribe an antibiotic mouth wash. Mind you I might see about getting the difflam one. Thanks Shi

 Hope everyone Is feeling well. I start my first cycle of Docetaxel on Thursday. I have steriods to take 4 lots twice a day. Can I just ask what time on the day of chemo did everyone take their steroids. Do you take 4 in the Morning before you go and then 4 when you got home?

 Enjoy your day everyone!

 Much love 💕 Tara xxx

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Re: June 2020 chemo starters

Please use what teams give you for mouth sores or if you have concerns about using it please discuss with them, it’s better than not using and getting an infection during chemo ❤️Please keep safe. Lots of us were given difflam previously and that helped and didn’t cause staining, please keep safe infections can take hold so quick on chemo. 💕💕Shi xx

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Re: June 2020 chemo starters

Hi Tara, 

What was the mouthwash that you were using? I was prescribed some on Friday as on my last cycle, I had a couple of mouth ulcers that took over a week to clear up using just saltwater or bicarb water gargling and bonjela. I'm not due to pick up the mouthwash until tomorrow when I have the 4th and last round of EC. I was looking at the mouthwash contraindications online but didn't see anything about staining. I may try to hold out from using it and just try more frequent preventative saltwater gargling unless I get multiple or big ulcers. I move on to weekly paclitaxel in September but, hopefully, I think that the side effects aren't meant to be too bad with the weekly dose, though I may get unlucky.

I hope that everyone is well and not struggling with treatment too much. 

Tabs

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Re: June 2020 chemo starters

Sorry meant to say have needed no dental treatment until now!

xx

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Re: June 2020 chemo starters

Hi Ann,

 Glad your second infusion went well. You are right it is very hot. Normally I wouldn’t mind but have to have the fan blasting all the time due to the night Sweats and hot flushes!

 I have my first Docetaxel on Thursday. The anxieties have started. I get so scared 😦 it’s the thought of the unknown. Only 3 more to go now though.

 My teeth have become stained from the mouth wash I have been using. I’m gutted more than loosing my hair as I have always looked after my teeth and until now have needed now. Dentist has given me some high flouride tooth paste and has said he will try and remove the stains after chemo. What a nightmare!

 Hope everyone else is feeling okay? 
 
 Enjoy the weather if you feel up to it.

 Lots of love 💕 Tara xx

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Re: June 2020 chemo starters

Hi Girls, how are you all doing?  I'v just had my 2nd P, H & T which went ok, no alergic reaction thank goodness.  Hope to hear how you all are, bit hot for sleeping, lets hope for a jolly good thnunder storm soon.

 

Love aNN

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Re: June 2020 chemo starters

Hi Horseylass

yes it is very hot. I’m in the shade 😀

ive been visited by friends and family ( not many) and going out to walk my dog. It helps with mood and brings me some energy 😷

glad your mood has improved x

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Re: June 2020 chemo starters

Yes, I'm feeling that, like it's all really dragging, I should finish chemo in November and then I'm really hoping I'll get my radiotherapy out of the way in December so that 2021 will hopefully just be a tidying up year. I'm really hope that I can get a matching mastectomy on my left side done by some time in March so that I'll be healed in time for a June holiday. I'd love to be swimming in the sea right now, ideally from a beach with a lovely little taverna! 

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Re: June 2020 chemo starters

It is hot isn’t it? Phew! I am enjoying sitting in the garden though. 

I have my 3rd (of 6) cycle of EC next Tuesday. Half way through then. Yay. October still seems like a long way off though, doesn’t it? 

I have felt quite down mentally this time. I think it is the fact that I can’t go anywhere or see anyone that makes it so difficult. Talking to people on FaceTime or Zoom is really nice but just not quite the same. Although I do feel better this week than I did last week. 

Just got to keep on keeping on haven’t we! 

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Re: June 2020 chemo starters

Hi all

 

I hope everything is going the best it can! 

ive just finished my EC treatment, and so far feeling ok, a little tired, but ok. However I’m dreading the injections later, in my opinion it’s the worst bit. 

Start Docetaxel in 3 weeks with Herceptin and pertuzumab, not looking forward to this, I’ve heard it’s not as kind as EC. 

michelle 

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Re: June 2020 chemo starters

Hi ladies,

 Been quiet in here. Hope everyone is feeling okay and enjoying the scorching weather!

 I have felt more sick and tired this time. It seems to be getting progressively worse. Just need to get through my 3 Docetaxel and then will feel happier.

 

 Take care all

 lots of love 💕 Tara xxx

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Re: June 2020 chemo starters

So sorry to hear that some of you are struggling. I don’t think that this heavy weather is helping either. Ie been sleeping really badly since my second dose. 
I had the heartburn problem last cycle but have some tablets now that really have stopped it, it might be worth contacting your team to see if they could send you some out. 

I have to keep reminding myself that this is short term pain for long term gain. We will get there ladies and we will beat this! xxx

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Re: June 2020 chemo starters

Hi Everyone,

I've been a bit quiet for a while, having had round 3 of EC last Monday. The first few days were fine but have been really tired since Thursday afternoon so have been taking it easy. I think most of my symptoms are from the filigrim (sp?) injections, aches, sore throat, bottom, tirednes,  etc. Am really looking forward to them being done. I was ok with them on the first cycle but I have to psych myself in anticipation now. Look forward to all the chemo and radio being done though it looks like it will creep into 2021. Hope the rest of you have a good week. Tabs

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Re: June 2020 chemo starters

Afternoon everyone

Tara sorry to hear you’re not feeling brilliant.  I’m due my third FEC on Thursday and I’ve still not recovered from the second one. I feel like I’ve never got any energy and appetite isn’t brilliant still.  I too go off of tea after I’ve had my treatment only had my first cuppa today.

ive been suffering from terrible heartburn this time round think I’ve taken out shared in Renee tablets 😂 

We managed to have a lovely break away last week only to a haven site, nothing was really open but it was a change of scenery.  Kids enjoyed it as the beach was deserted.  I felt bad though as I was too tired to go with them and hubby all the time so had to stay and rest in the caravan.  Was proud I managed a 4 mile walk one day but then ended up in bed poorly so think I may of over done things.

im worried that this second round has really taken it out of me so I’m dreading how it’s going to affect me after the third one.  

it’s sunny here still so I’m going to sit out in the garden for a while and see how I feel.

hope you all have a lovely day xx 

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Re: June 2020 chemo starters

Hi ladies,

Thank you for all of your advice. The bath was lovely and has perked me up!

My husband has just been to Tesco and got some sparkling water and different squashes for me to try so I will give it a good go.

 I think we have to expect the further along we go the tiredness will get worse. Roll on the end of September, can’t wait to be me again! At the moment I feel like the kids expect me to move at 100 miles an hour like they used to and I have had to explain that mum is a little slow at the moment 😝  

 Hope everyone is enjoying their day. It’s raining now here. The slip and slide has had to be abandoned until in the week!

 Love 💕 Tara xxx

 

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Re: June 2020 chemo starters

Dear everyone 

Reading all these posts always reassures me, thanks everyone. I had my second EC on the 15th and am only just getting over it. I also found Tara, that I couldn’t manage water. I thought I was going crazy. I also went off tea. I’m trying to drink squash and fruit juice, I also like flat Diet Coke. My husband got some sparkling water yesterday so I’ll try that. Not drinking enough has made me feel more sick, and given me headaches and constipation. Hopefully this week will be better. Take care everyone.

love CactusQueen x

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Re: June 2020 chemo starters

Hi Tara. 

 I had my 3rd Fec Friday , felt more nauseous afterwards too . Been taking the anti sickness pills but slightly better today . I’m too struggling with drinking more clear fluids .... not a good drinker at the best of times . I find squash with sparkling water easier to manage , bottle green elderflower is lovely!
hope you feel better soon x

 

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Re: June 2020 chemo starters

Hi tara  sorry to hear you been struggling.  I most admit after my 3rd round of chemo EC  I struggled for longer then the first 2.  On Thursday I start my next round of chemo of Carboplatin and paxitacil  feeling a bit nervous  as the Carboplatin is every 3 weeks but I got have the paxitacil every week. So lots of going up to hospital. But it be worth it in the end.  Have a good day  and hope the soak in bath has made you feel betterxx

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Re: June 2020 chemo starters

Hi, aNN, and everyone else. A warm welcome to Michelle too.

 I am good thank you. Found my third and final round of FEC a little harder to be honest. Feel really sick, although not been sick and my nose feels like I have been tumble turning whilst swimming and the water has got up there 😝  I am more tired too. My treatment on Thursday was really quick I was in and out in a flash, perhaps that’s why. Half way through now!

 Hope everyone else is feeling okay and not feeling to unwell with the side effects of their treatment.

 I am struggling a little with drinking plain water and any squash added to it you. Even just sipping water makes me feel nauseous. Have a craving for pure orange juice, but not sure if this will flush chemo through effectively. Any suggestions?

 I slept fir most of the day yesterday and are just about to have a bath to see if that livens me up a bit more today.

 Sun has just began to shine so may sit in the garden later and watch my boys on their new slip and slide that my mum has brought them. That should be fun!

Hope you all have a happy Sunday. Keep smiling.

 Lots of love 💕  Tara XX 

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Re: June 2020 chemo starters

Hi Michelle, welcome, the more the merrier, it sounds like we are on similar programmes, I've had 3 x ec and now on HP & T for 4 infusions.  

 

Tara, how are you doing?

 

Cheers aNN

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Re: June 2020 chemo starters

I’ve been ok. The second round I didn’t have any nausea at all and I’ve been managing to walk at least 3 miles every day which I think has really helped me. I had a lot of heartburn after my first round but I now have tablets for that which have stopped it altogether. 

I did the injections myself as my husband is a wuss too. Not a nice job but bearable although I was glad when they were over! I think that’s one of the worst bits. 

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Re: June 2020 chemo starters

Hi Horseylass

Thank you for your welcome.

Ive not been too bad all in all, those injections of filgrastim have been the worse bit for me. Ive had to get a friend to do it for me, im a bit of a wuss when it comes to needles  🙂 

How have you been?

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Re: June 2020 chemo starters

Hi Michelle,

Welcome to our group. I have my 3rd EC on 4th August, I’m having 6 EC. 

How have you been coping with it? 

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Re: June 2020 chemo starters

Hi i started my treatment 15th June. Ive already had 2 EC and have my 3rd on the 29th July. I then start on THP for a further 3 treatments.