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anyone starting chemo in August?

GillyR
Member

Re: anyone starting chemo in August?

Julie 66 where are you in Kent? I am in East Sussex xx

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Re: anyone starting chemo in August?

Jacquie,

Thank you for Gelclair link I have requested a free sample online.

chezzap
Member

Re: anyone starting chemo in August?

hi all

is anyone having a tingling face?  I had this last time too.

Think swapped sickness for muzzy head this time.

Interesting what you say about hearing loss as |I have to keep asking OH to repeat things I thought was cos had my anna bandana scarves over my ears!!!!

hotkatz_ingoa
Member

Re: anyone starting chemo in August?

Just for the record. Like Pendragon & Pennycrow, I too am 51 (born Dec 61). Also lump was found on first mammogram. Which steroids are you girls having as I had no trouble sleeping and wonder if mine were different, or was I just lucky? Have had a lovely day& lunch out, nice weather here so off out again tomorrow. Got to make the most of it while I can!! Bev xx
GillyR
Member

Re: anyone starting chemo in August?

Jacqui, do your ears feel full of cotton wool too and make you dizzy just to stand up and walk around?  xx

Jacquie08
Member

Re: anyone starting chemo in August?

Oh good I'm glad to hear that Annie, I was nervous waiting for the phone to ring after I had my bloods done on wed, really is a case of no news is good news!  Fingers crossed for you xx

Annie62
Member

Re: anyone starting chemo in August?

Nooo - not in hospital Jacquie thank goodness!!  I certainly don't want that to happen again!

 

I did post yesterday, I think, so many posts it's hard to keep track, but I'm keeping my fingers crossed for OK blood levels in time for Thursday.

 

Annie x

Jacquie08
Member

Re: anyone starting chemo in August?

Hi girls and welcome Anna I'm so sorry just tried to tab up and now can't? For your full name,   65 of us truly amazing!  Hope you're ok Annie last time you were quiet you were in hospital?  Gilly I have hearing loss and tinnitus as se on EC,  it does resolve post chemo but some people have a little hearing loss permanently. ?...yuck!   

I suffered really badly with being wired on steroids 1st cycle, I asked if I could halve the dose but nurse suggested taking at 7 and 11.  As I was awake from 04.45 yesterday and 05.50 this morning I have taken them at 6 and 10.30 and slept so much better.  I felt very sick so got emend for this 2nd cycle you need to ring your helpline and get some for next time as you have to take 1st 1 an hour before chemo.

 

Did anyone see the gelclair link or was my post lost in Maisie mayhem?  Xx

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Re: anyone starting chemo in August?

Gilly, I was told that hearing loss and tinnitus was a side effect of fecT, and that it would go when treatment finishes but not sure if that meant it would last throughout or come and go. Just what I need, I'm already deaf in one ear, I do hope this improves for you, it's so distracting when you have ear pain.
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Re: anyone starting chemo in August?

Ju I wonder where in South Wales you are? I'm from Newport originally although now live in Kent but visit often to see my family.
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Re: anyone starting chemo in August?

Christy I am redditch 🙂 i work at bromsgrove hospital , il pm you my number and let me know if you want to meet for coffee , be better after the 5th as my little one will be back at school cxxx
GillyR
Member

Re: anyone starting chemo in August?

Thanks Penn, I have read up on all the FEC drugs and couldnt find anything. Whichever one it is, I need the dosage lowered I reckon, it has been awful and should be easing now surely, its nuts xxx

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Re: anyone starting chemo in August?

Gilly,

I know that some chemo drugs can affect the ears.  Definitely talk to your oncology team about this.

Penn x

GillyR
Member

Re: anyone starting chemo in August?

Hi there Anne-Marina, welocme aboard the happy train.

Has anyone else got a noise in their ears like the inside of a shell and feeling like you have cotton wool in them. My head feels clear but when I start moving around I am so dizzy and I am sure its from whatever is going on in my ears. They have been like this since day 1 and they put the drug in that makes your head go funny. Words with onc I think. I would feel good apart from that today and it is stopping me going out as I am too unsteady on my feet....Grrrr xxxx

Anne-Marina
Member

Re: anyone starting chemo in August?

Is there anything you can do to lessen the effects of the steroids - I took them really early as I was warned, but still couldn't sleep more than an hour or two.  Don't suppose I can pinch some of my OH's Diazepam?

chezzap
Member

Re: anyone starting chemo in August?

Hi Anne Marie welcome on board - yes the wired feeling is the steroids Im afraid

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Re: anyone starting chemo in August?

Hello Anne-Marina,

Welcome to the August Maisies, you are our 65th Member.  I'm sorry that you qualify for membership because you are undergoing chemo, but the delight of being in such a big group is that there is plenty of chat, support, experience and laughter to call upon.

 

We have two other ladies (CarryF and KiwiHelen) who also started chemo on the 21st.  As yet Bar Group has no name but if you three want to suggest something, I will add it to the list. 

 

Good to hear that your side effects have been small-ish.  Yes, it is the steroids that make you hyper.  Don't take your second dose after 2pm or you will not be able to sleep at night.

 

Any questions just ask and someone on the forum will know the answer, or know who to suggest may have the answer.

 

Best wishes,

Penn x

Anne-Marina
Member

Re: anyone starting chemo in August?

 

Hi all Maisies - I have finally succeeded in posting something - don't know what I was doing wrong! Anyway, I would like to join the group  - I have been reading some posts. - I started chemo on 21st August - I'm on FEC-T 3 cycles of each.  I have been fairly lucky so far I think - felt sick but not being - headaches and now the sore mouth/ulcers have started.  Is it the steroids that make you feel so 'wired' ? If so is there anything you can do about it?  I haven't had much sleep at all for a few nights and am exhausted from 'dancing' around all the time!  I have a PICC line - it suits me well as I have small veins and always have difficulty when they want to take blood.  I also have the Limbo sleeve to go over it - that's so much easier than the cling film I was using! 

 

Please can you include me with all the others who went to the bar on 21st?  What's that group called?

 

 

Christymay
Member

Re: anyone starting chemo in August?

Thanks penny xxx
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Re: anyone starting chemo in August?

thanks pennycrow and yes 62 was a good year my OH is a 62 babe as well lol, thanks for altering your ever changing list most prob wont get to go now just to be awkward xx

sam i suffer from AF which includes palpitations and they have completly changed my meds, they also keep a closer eye on your heart whilst on chemo, i have a scan every 2nd time of herceptin, hopefully it was all ok last time so wont change too much, not feeling any great change, had a couple of palpitations the first night after chemo but seemed to go as quick as they came. sorry if im rambling bad day today !! xx

hope you all have a good day, suns coming out here in sunny beds so hopefully a nice bank holiday ahead xx

GillyR
Member

Re: anyone starting chemo in August?

Sam I have sent you a message xx

samjs
Member

Re: anyone starting chemo in August?

Hope you have a good afternoon ladies,

Me and the Oh are going out shortly to the pub again (promise I do not have  a drink problem, just going out while i can). We are going for drinks with several people: a couple who  are getting married in a couple of weeks in Greece and we missed both the hen and stag nights. Also  some friends are moving to Canada so it is good bye drinks with them. 

But I do  ahve a question if anyone can answer it. I suffer with heart palpitations but am not on medication- has anyone else had these prior to chemo and if so what did  docs say regarding it and chemo?  See I was wanting that appointment so much now I am already starting to worry. xxxx

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Re: anyone starting chemo in August?

Bakeswhenstressed (Katherine) - you have a complicated, concurrent chemo cycle.  If you want to let me know the weekend before each Monday if you are in chemo that week I will add you to the weekly list.  Otherwise, know that we will be thinking of you whenever you are having treatment.

 

List revision: 

 

Subject to positive blood results, those up to the bar this week should be 14 of the group:

Tues 27th Julie66 (Chemo #1); Chrissie49 (Chemo#2)

Wed 28th JunieB (Chemo#1); Three Amigos #2(Tasha, Whiterose and me)

Thu 29th Pendragon (Weekly), Three Degrees +2 #2 (Annie, Bumpkin, Deb12, Breezy and Sakura1971)

Fri 30th Jo43 (Chemo#1), Bakeswhen stressed (Concurrent chemos)

 

As ever, please let me know if I have missed anyone.

Bakeswhenstres
Member

Re: anyone starting chemo in August?

Oh, and Penny, just to complicate matters I'm having my vinorelbine chemo on Friday this week before having the four day run of cisplatin the following Monday and another vinorelbine sometime that week I think. C is on a 3 week cycle but V is bracketed around the first and last week of rads.
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Re: anyone starting chemo in August?

Christymay - don't worry about your scans.  Your oncology team is just making sure that you are fit and stay fit through your chemo.

 

(Mmm - I've just read again what I wrote and it sounds mad as we are all having side effects with chemo and being fit in chemo sounds like a contradiction!)

Christymay
Member

Re: anyone starting chemo in August?

I might have got it wrong but sure that's wat they said, I've got a ct scan weds so dreading it as I obviously think the worst & a heart scan on following mon
Christymay
Member

Re: anyone starting chemo in August?

I love it,& cuz my name Christy may it fits xxx
GillyR
Member

Re: anyone starting chemo in August?

Christy, normally with FEC-T you have 3 sessions of FEC and then 3 of T. Have a chat with your onc when you see them xxx

Bakeswhenstres
Member

Re: anyone starting chemo in August?

Christy, it's maisies because we are the Amazing Augusts.
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Re: anyone starting chemo in August?

Pendragon that's you and me at 51 then!  Must have been a good year  Smiley Wink

Tylerrose
Member

Re: anyone starting chemo in August?

Hi Lucy ditto I had endometrial cancer 2 years ago that's all clear now bloody breast cancer that's spread to spine ribs and nodes makes me wonder why some people , but I suppose that's life, just back from doing a car boot with my daughter now chilling with a cuppa , hope everyone as a good day luv to all xxxxx Rose
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Re: anyone starting chemo in August?

Sergio's good appetite is a very good sign!  Smiley Happy

Christymay
Member

Re: anyone starting chemo in August?

I have FEC-T, well the T part on mon 9th September, it's all confusing to me as ive only had 1 dose, might understand it more the more I have! Well I hope so anyway x
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Re: anyone starting chemo in August?

Deb - kidney stone sounds grim.  Don't know much about them I'm afraid, but hope that you are sorted out ASAP.

Extra trauma you can do without.

 

Penn x

chezzap
Member

Re: anyone starting chemo in August?

ha ha  nice one bakers dozen. 

I quite like Hells Bells too for a bar name for someone!!

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Re: anyone starting chemo in August?

 

Hells Bells - I left you off the list again Pendragon.  I am really sorry.  I even managed to ignore the note I'd left myself on the file.  Just shout at me if I do it again.

 

Okay everyone, with profuse apologies to Pendragon, the revised list for next week is:

 

Subject to positive blood results, those up to the bar this week should be a Baker’s Dozen:

Tues 27th Julie66 (Chemo #1); Chrissie49 (Chemo#2)

Wed 28th JunieB (Chemo#1); Three Amigos #2(Tasha, Whiterose and me)

Thu 29th Pendragon (Weekly), Three Degrees +2 #2(Annie, Bumpkin, Deb12, Breezy and Sakura1971)

Fri 30th Jo43 (Chemo#1)

 

chezzap
Member

Re: anyone starting chemo in August?

ah Deb what a royal pain in the butt.  Hope you are on the mend now hun.  Not found out Sergio's blood results yet and imagine wont be til Tues with the BH.  He has just had some paella for lunch cooked by Jose and wolfed it down.  That boy can sure eat!!!

 

Am going to waterpark now for some fresh air and a walk braved putting on annabandana scarf and Rafa said I look like a neverland pirate!  Thanks for that kidda!!!

 

have great day everyone xxx

Jacquie08
Member

Re: anyone starting chemo in August?

Ec #2 day 3

Morning Maisies wow what a lot of posts since just last night!  Sorry Karen that I gave the quote credit to Gilly by mistake! I'm 50 exactly and didn't find a lump, my ca was discovered on first routine mammogram thank goodness for screening eh!  I do sympathise w kidney stone pain they reckon it is worse than childbirth!  If they are gravel like they pass quite quickly, I remember sieving urine through gauze on the ward  to measure them!  They blast bigger stones with lithotripsy but no idea if that is possible whilst on chemo?

Ref sore mouth I saw a link on another thread for a free sample of gelclair concentrted oral rinse gel the card says it's available on prescription or it costs 36.75 to buy, so hopefully good stuff! The website also gives info on oral mucositis (more jargon I know) as well as links to other helpful sites.

 

  It's   www.gelclair.co.uk  I hope it helps!  

 

Hope you're feeling better Ju?  We have both had major hangups ref hair loss I remember chatting about it on another thread?  It is such a public C over the top of your head I thought, however my head was so bloody sore and the trauma of handfuls coming out even when the wind blew meant it was quite cathartic having it shaved!  I can't say I'm happy as a baldie but it will grow back and I'd rather obliterate this cancer than be in my box with a full head of hair?  Soap box rant over!  Hope you all cope with whatever you have to today you're a lovely lot of ladies to chat to!

Lots of love Jacquie xx

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Re: anyone starting chemo in August?

EC cycle 1 day 18

 

Good morning maisies, sorry been away for a few days. I hope all your se's are disappearing now girls, I will keep my fingers crossed for you.

My trip away didn't quite go as planned, as I said missed our first night in skegness due to ending up in a&e due to kidney stone moving. Made it for 2nd day and promptly spent the evening in the room in agony not good. It seems to have eased off now thank god but still no sign of it, totally unrelated to our forum but does anyone know how long it takes for a kidney stone to come out. I don't want to still have to deal with this when I have my 2nd chemo on thurs aasrgh!!!!

Ju glad your OH is back home now plenty of hugs hun. Chezza hope you are doing ok and Sergio is ok. X x x

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Re: anyone starting chemo in August?

Morning my darlings,
For the new ladies again, a product called Xylotene from an Internet company called sweet cures is a miracle worker for mouth ulcers, sore throats and other mouth pain. It's a naturally occurring plant sugar, no chemicals or alcohol. You dab it on ulcers neat or mix a spoon of the sugar with warm water and mouth wash with it. Pain relief is instant.
Christymay most of this group is young - me and whiterose are both 44. One poor lady in the July group is only 28. At least being younger we are more able to handle the treatment xxx
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Re: anyone starting chemo in August?

morning maisies, another bad nights sleep for me, very dry mouth last night but thank god no idigestion!!

im also in my 50s 51 to be precise, lol.

penn im up every week for dunking huni, bar delays as i seem to be only maisie on weekly cycle with herceptin thrown in every three weeks, i presume i dont get time for up and down days as such, bit of a pain trying to plan anything!!

overcast and wet here but supposed to brighten up later, think ill try for a bit more sleep. hope youre ok lyndsey and youve had lots of hugs lois, my OH back to work on nights tonight so no cuddles for me.

hope you all have a good day, and SEs not too intrusive xxxx

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Re: anyone starting chemo in August?

Lucy,

I am so sorry to hear that you are going through the mill again with cancer.  All I can say is that your wonderful positive attitude will carry you through.  Good on you!

Best wishes,

Penn x

Lucy58
Member

Re: anyone starting chemo in August?

FEC-T #1, day 13

 

Good morning all,

 

A gorgeous day here, so I'm off out shortly making the most of the weather whilst I am having a good day.  

 

Penn, yes you are correct, I am in my fifties.......59, same age as rollercoaster.   This bloody awful disease (as my sister used to call it), can affect any age, and we will all be ecstatic when a cure is found.  In the meantime, it would be great if they could come up with a chemo regimen that is free from all side effects.

 

There is so much more support for breast cancer than some other cancers, and I am so very grateful for it all.  I woukd like to say a big thank you to all you ladies on here.  Last year when I was diagnosed with endometrial cancer, I found that there is very little support here in the UK.  Thankfully, in that instance, my family, friends and the local hospice helped me get my head back together, and they are still continuing to do so, to get me through this.  

 

So cancer........up yours.........I am not going to let you win!!

 

 

chezzap
Member

Re: anyone starting chemo in August?

have a great night Breezysounds like will be really good

Christy yes dunking refers to the chemo

Lynsey is still in hospital.  They have given her a different injection this morning.  I have sent all our love to her

Christymay
Member

Re: anyone starting chemo in August?

I live in bromsgrove? Bout 15 miles from Worcester? Where are you from breezy?

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Re: anyone starting chemo in August?

FEC 1 Day 6 feeling better today I think.  Cold sore going, had breakfast and numerous ginger biscuits with tea and could even taste them.  Thanks to Gilly re the ginger beer which I had last night, was quite nice to actually taste something.  Wish these injections would finish (2 to go) as by the evening am feeling achy all over especially around my shoulders.  Might even try some housework today and see how i go although I tend to get pretty breathless quickly.  Hope everyone is feeling a bit better today.  Karen x

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Re: anyone starting chemo in August?

Fec 1 day 18 hi Maisies , christy r u from worcester itself or Worcestershire if so whereabouts? I'm 41 so just bit older , getting more used to my shaved head although it doesn't look that nice covered in bald patches but my mouth is so sore IRS making me miserable this is meant to be my good week? Anyway getting me heels wig and lippy on tonight as our friends have been doing a 24 hour dj set for cancer so I'm going tonight for the finale 🙂 hope ur ok everyone x
Christymay
Member

Re: anyone starting chemo in August?

Right I get it now,so dunking is chemo?

hotkatz_ingoa
Member

Re: anyone starting chemo in August?

E-CMF #1 Day 12.. Morning Maisies. Feeling quite normal today,even taste buds are better, sherbet lemon's refresh mouth quite well. For those of you who've been suffering with horrid se's, hope you're feeling better too. I've found each day to be a little bit better than the one before, though I've been very lucky and not been too bad at all. Hope everyone has a lovely day. Love 'n' hugs Bev xxx
chezzap
Member

Re: anyone starting chemo in August?

ha ha I think its cos we are called the Amazing August so we shortened it to Maisies from Amazing

we are also known as hobnobs if you are familiar with the Peter Kay joke about dunking biscuits.