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anyone starting chemo in August?

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Re: anyone starting chemo in August?

Hi chezzap, just so you know I have pm'd you re your suggestion
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Re: anyone starting chemo in August?

hi chezzap im on paclitaxol and herceptin, was feeling ok but had them both together for the first time last week and has made me really tired. also got painstripper mouth and horrible metallic taste driving me crazy, i have weekly taxol and herceptin every third week.  not sure ill be at the bar this week usually im feeling quite normal by a tuesday bt not this week, think depression has kicked in too. 

sorry to be a moany maisie this morning, was up at midnight clearing drawers out as i couldnt sleep , many more nights ill have nothing left to chuck away.

love to all hope this nasty se's arent too bad xx

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Re: anyone starting chemo in August?

hey Annie are you ok as they say in Smooth Criminal!!!  I have only just cottoned onto that!

Its weird how we all get different SE isnt it thats why this thing is so unpredicatble.  i just starting to feel I know where Im up to with the EC part and then after my next cycle Im changing to paclitaxel and herceptin so a whole new host of hidden delights to expect!

 

Hey heres an idea ( not to be taken seriously of course!!! ha ha) but maybe if you actually gargle with paintstripper it might be so strong it gets rid of the sore throat!!!!

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Re: anyone starting chemo in August?

Thanks Chezz - as I said, it's easing off now thank goodness.  Yes, tried salt water but I think that's to ward off infection  more than anything.  It's no match for painstripper throat!

 

Hoping for a whole 'good' week this time - fingers crossed.

 

Annie x

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Re: anyone starting chemo in August?

sorry annie oyu must have posted as I was typing!  Sorry to hear about your sore throuat .  have you tried gargling with salt water pre boiled?

 

Day 13 means that you should be coming into good week in next day or 2 so hang  on in there

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Re: anyone starting chemo in August?

Hi all

genevre sorry to hear you feeling down.  This really is a crap six months or so isnt it.  I try to reply and include everyone but is extremely difficult as there are over 70 of us so if someone disappears for couple of days etc it may go unnoticed.  Its not intentional its a lot harder now that Alix cant post the list on here of who is up and when.  Plus having the c hemo haze on top of it all doesnt help.

 

I suggested ages ago that we swap numbers with just a couple of maisies so that way we all know we are being kept an eye on more closely and if we are feeling that bad or down that we cant even be bothered to post we just send a quick text to one of our maisies and they can let everyone know that even though we are missing in action that we are accounted for if that makes sense.  I know that wont be for everyone but its just added peace of mind for some.  If you want to pm me I will give you my number if you like

 

If Ivory mummy feels the forum is too busy and that people get overlooked I hope she manages to pm someone who she may have felt more of an affinity with and gets some support that way.

 

Roller thats a really good hb count love those iron supplements must be working!!!

Lols good to hear from you hope you feeling ok this time round chick.  let me know what hat you get.  Wish I was in Swansea I LOVE jigsaws.

Christy  good to hear from you too darling and you get better sleep tonight.  Dreaded steroids!

Hope everyone else is good and Gilly gets home safely

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Re: anyone starting chemo in August?

Genevre, I get that painstripper feeling too - it's horrible, isn't it?  I also feel as though there's a lump somewhere at the back of my throat which makes it hard to swallow.  I'm on day 13 of FEC2 and it's just beginning to ease a bit!

 

I've tried Xylotene, which someone on here recommended, but like Difflan the effect is only temporary.  I'm definitely going to get some Gelclair from my GP before next time, as all my Onc recommended was salt water....

 

Annie x

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Re: anyone starting chemo in August?

No sleeping pills, but with a day out all day sunday followed by a very late night followed by a long day yesterday just finished me off I think. By 8pm I couldn't hod my eyes open so gave in gracefully, glad I did now. Hopefully with the change in steroid times you'll do better too. Hugs, xxx
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Re: anyone starting chemo in August?

 

Morning Maisies, so sorry for all of you having a horrible time, hope you feel  better soon.  Sorry I can't mention you all by name, I haven't been on for a couple of days, feeling  bit grim, and am overhelmed by all new posts. Trouble is I don't want anyone to slip through the net like Littleivory, it's so easy to miss new people.

Now on day 8 of cycle 2 and it feel like I've swallowed paintstripper!- anyone else experienced this? Have tried Difflam for mouth and throat (works temporarily, will try to get gelclair as lots of you mention that) and gavescon for burning digestive tract (disgusting, makes me retch). Also feel quite low, perhaps because se much worse this time round.

Christymay and Linsey, I think we’re all scared as well as being fed up!

Lots of love to all you amazing people.

 

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Re: anyone starting chemo in August?

Morning roller, wow wat a sleep did u take sleeping tab? I want some of what your having!
Thats way I feel all zonked out & tried getting up felt nauseous so bk to bed I went! Try & rest that's wat I am doing! I'm def taking all my steroids before 6 like prescribed I will never sleep! Can't do me any harm xxxxx
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Re: anyone starting chemo in August?

Morning all. Slept well, 8:30 - 6:30, wow. I composed a post already today, took me ages then it vanished and I haven't got the steam to do it again, i feel ok but steam rollered. Moving makes me feel nauseous so staying in bed right now. Hope all doing ok and ses minimal.

Christymay, the chemo nurse told me to take my steroids morning and lunch time or even take all four in the morning if i like but definitely all before 2pm. Btw, my hb was 12.9, wbc 5.9, neuts 3.6 and platelets 249 , not bad.

Will try and post again later, going back to sleep again now, hope all treatments or appointments go well today and ses are minimal for all, hugs to ALL xxx
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Re: anyone starting chemo in August?

Morning maisies,  sorry to hear you are feeling abit rough Ju lets hope it goes away after abit of fresh air hun. Dee  have a fab day today with your friend. Good luck gilly I willl be thinking if you, let us know when you are back safely. I hope the rest of the maisies are doing ok and your se's are minimal, take it easy girls and plenty of rest , sending big hugs x x

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Re: anyone starting chemo in August?

Hi gilly no just ondansetron and domperidone!!! Took one early ok at mo!!! X
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Re: anyone starting chemo in August?

Ju, are you having Emend as well? Hope you werent too sick last night and that you have a good day xxx

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Re: anyone starting chemo in August?

TAC 2 day 2.
Morning Maisie's crap night I'm blaming the steroids been on them since Sunday . Bit sick , ears noisy , tired but otherwise ok ish. Up now and going to get some fresh air. Good luck today gilly and anyone else at the bar. Breezy enjoy your day out. Hope all dixies aren't suffering to much. Got that injection later then the lovely bone pain !!!
Off now th find nice hat so I don't scare postman as I hope my jigsaws arriving today. Good day Maisie's xx ju
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Re: anyone starting chemo in August?

Morning Maisie's, thanks Gilly that's wat it's called have to send the OH to get some, think it will be a nice change to water,

Good luck today Gilly & anybody else up at the bar!!

FEC-T ,2. Day 2

After such an ordeal yest slept considerably well, but hey that could soon change as I've just taken my first steroid & first time round felt like I was on another planet, decided take them early as I was taking last one at 6 & was up half night, asked chemo nurse & she said not really should stick with same times, oops!

How everybody has a good day!

Enjoy your day with your friend breezy, nxt wk we get to meet up, exciting times!!

Xxxxxxxxx
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Re: anyone starting chemo in August?

Good morning ladies , .hope everyones Ses are minimal , good luck Gilly at the bar will be thinking of you , I am off out to visit a friend today hope you all have a great day xx
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Re: anyone starting chemo in August?

HI Venice good to hear from you and glad you doiung ok.  Are you up this week?

 

Lucy you are on the fb page alreday arent you as the swan????

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Re: anyone starting chemo in August?

Christy, are you talking about Laimon Fresh? It is really lovely. Either big tescos or Waitrose sell it xxx

 

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Re: anyone starting chemo in August?

Evening maisies, glad all the girls are back from the bar now, I hope all your se's are minimal. Lucy it sounds like you have really been through it hun, if in doubt hun ring the chemo ward you shouldn't have been passing out. Some if the maisies are on a closed facebook group and it is easier for us to keep track of one another on there. If you want to join just send a request and gilly will accept it. I hope you start to feel better soon x x

Good luck to gilly and any of the maisies up at the bar tomorrow, goodnight ladies sleep well debs x x 

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Re: anyone starting chemo in August?

hi venice here ,I am doing ok been having trouble with this new forum keep having to re-set my password . wishing everyone well love Gill x
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Re: anyone starting chemo in August?

I am back OK with lots of delays but feel OK and really wired with all the steroids. Got back atafter eight but then started making cakes! Just trying to make most of a few normal days.

 

Some of you sound as if you have a really bad day.Hope things pick up for all of you.

 

Wishing you all well for the rest of the week xxxx

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Re: anyone starting chemo in August?

Hope everyone that had their trips to the bar are all ok , you all seemed to have horrendous dAys so hope all ur Ses are minimal , Lucy you poor thing u take it easy and rest up , GIlly good luck for tomorrow hun il be thinking of you , hope everyone else is ok much love xxx
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Re: anyone starting chemo in August?

Glad all of you made it safely home in the end. Sounds like for most of you it was quite a long drawn out day. Hope you manage to sleep well tonight. Lucy you sound like you have had a really tough time, fingers crossed you have turned the corner. Hope head is not too sore. Rest well Maises and may the se be kind to all. filly will be thinking of you in the morning.xx
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Re: anyone starting chemo in August?

Night night Maisie's, hope we all get some sleep! Big hugs to my amazing friends xxxx
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Re: anyone starting chemo in August?

Aw Lucy what a crappy few days you have had.  If it happens again dont take anychances just ring the ward and see what thye say.  Have you had the wbc injections?  Remember your blood count will start to dip now so even if you feeling better dont overdo it

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Re: anyone starting chemo in August?

Does anybody know the name of that lemon drink? I really want some & where do I get it, I'm fed up of water which is all I can manage at mo xxx
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Re: anyone starting chemo in August?

Poor you Lucy, you are having it flippin rough! I hope things start improving soon, I want to sleep but can't so annoying!!!

Thanks Karen for advice on my arm, I will keep close eye on it, can't be doing with something else going wrong!!

Thanks Lynsey I don't even think I've got 1 good vein now, they have always had problems getting blood!
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Re: anyone starting chemo in August?

Wow Lucy what a terrible time you've had!! 😞 that sounds awful passing out and hitting your head that hard you have a bump! How is your temp now has it come down further? Glsd you eating now!

Has Venice25 posted recently? I did get a pm from her but just wondered how she was doing. Hopefully i will see her friday if she hasnt posted.
Xx
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Re: anyone starting chemo in August?

Christymay yes im scared i think its the fear of the unknown again! Yes i will let you know how i go on i just hope its easier than trying to find veins everytime as i only have 1 good vein in my hand so want to save that! Xx

Glad you home safe Chezza xx
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Re: anyone starting chemo in August?

FEC-T #2, day 7

 

Evening Maisies,

 

Well I certainly don't want a repeat of the past 31/2 days.  Only been out of bed for trips to loo.  Yesterday panicked when my temp went to 37.7, but fortunately came down an hour later to 37.4.  Think I probably should have phoned chemo unit on Saturday after I was passing out and actually fell off loo.  I have now got a bump on my forehead to boot.  Did not realise how cold bathroom floor tiles can be!  Still feel quite delicate, but at least I'm now eating properly again.

 

Second chemo so different from my first, that I now have no idea what to expect on the third.  So a case of wait and see I think.

 

Having just read all previous postings since my last post on Friday morning, I can fully empathise with Ivorymummy, and know where is coming from. Hope she has decided to give the forum another try.

 

Hope all goes well for anyone up for dunking tomorrow with minimal se's x

 

 

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Re: anyone starting chemo in August?

evening maisies

Well 3 down!  After massive delays and numerous failed attempts to access the portacath finally done it. Did nt get out til six but am feelimg fine so far.

Claire hasnt let me know how she got on yet last I heard she had been sent home cos bloods were too low but the dozy sods had read the results from Thurs so when they realsied they called her back to say she could have it after all so she had to head back to Christies.

Christy you sound like you have had a tough day but its one less to worry about

Roller not been bed of roses for you either but you are back and in one piece thats the main thing

Lols hope you are in bed now and resting up

Has Daisymegan posted on fb I will have a look soon

Hope everyone else is doing well

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Re: anyone starting chemo in August?

Maisie's I've loads of gel Clair pm me address if you want me to send some. Gilly I'm same ear thing never went but more noticeable now very annoying!!!!! But keeps sickness away just nausea and indigestion and exhausted!!!! Hope all Maisie's at bar ok tomorrow, and all Maisie's se ,s manageable. Meg you safely home? Having hot flushes don't like them at all they'd better go again. Xx nite Maisie's peaceful dreams xx
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Re: anyone starting chemo in August?

Gilly hope your bloods ok as i can imagine it being even more depressing if they have to cancel, nearly did with me!!

I'm just feeling very weary tonight so hopefully I will sleep later 😖
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Re: anyone starting chemo in August?

Lynsey at least I not on my own, are you scared? I am!! You will have to let me know how it goes please xxx
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Re: anyone starting chemo in August?

Looked up Aloxi and it is the same drug as ondestron. One of the things it effects is the ears. Trouble is that mine havent returned to normal, they are still humming and growling away...Grrr. Just hope it doesnt get lots worse tomorrow, it will drive me nuts xxx

 

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Re: anyone starting chemo in August?

Just to let yoyu know anm home.  will read posts and catch up after Corrie!!!

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Re: anyone starting chemo in August?

Ju I dont have ondesteron, I have Emend and Aloxi, maybe I should look up their side effects.

Hope you and the other girls have a good night tonight.

I am up at 10.30 tomorrow if bloods are ok

xxxx

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Re: anyone starting chemo in August?

Glad you all back Ju, Rollercoaster and Christymay take it easy ladies hope your se's are minimal xx

sorry it was a rough day Christymay i have to have a hickman put in on friday before my chemo same day im just hoping it makes it easier as they struggle to find veins in me! It will be better than using your arm surgery side!

Maseo i got some aloe vera toothpaste from holland and barrat which is good for the mouth and i also use cordysol mouthwash.
Xx
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Re: anyone starting chemo in August?

Glad your bk rollercoaster all take it easy dixies. Just heard of chez she's on way home so that's four in. Gilly ondesteron ears buzzing like crazy at mo. got eye drops today eyes sore but look ok, just had a sleep, bit nauseous and dizzy. Your up tomorrow gilly? Good luck Hun I found it easier somehow xx at least hair worries are over !!!
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Re: anyone starting chemo in August?

Afternoon ladies, fab day out at seaside with fish and chips yummy!

Welcome back Ju, Rollercoaster and Christymay I hope you all continue to feel ok, remember rest and plenty of water to flush the chemo through, sending big hugs x x 

Still waiting for 3 more dixies I think to report back in? X x

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Re: anyone starting chemo in August?

Ju, what anti sickness are you one? The onc told me the ear thing is probably the anti sickness, my ears are still making odd noises, it never went away, I just lost the headache xx

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Re: anyone starting chemo in August?

Fec 2 day 1

Hey girls, I'm back home! When I got to the hospital they said you have to repeat your bloods, the neuts arevtoo low at 0.6, chemo can't go ahead but they had already put the cannula in so they could take the blood test from it, so I said to onc can we leave it there until the results come back in case it goes ahead . He says well if you want to but it won't have gone up enough so you will have to postpone for a week. I sat down to eat lunch nand the nurse comes back and says you can go ahead, your neuts are 3.6. A result! Also I got the emend aswell as the injections to boost the white cell production. So it was a long day with ups and downs, but it's done so I'm a third of the way with fec treatments, next time will be half way. So far I feel ok , hope it lasts. I'm a bit tired bu thats hardly surprising after yesterday. Hope all the other dixie chicks are ok, 3 reported now and 3 more to go I think.

Sorry you had a rough time christymay, at least you did get it done, they didn't postpone you so youre a third through as well, something else to cross off your list.

I was sat next to a lady who is having exactly the same regime as me but she's further on , just started the herceptin today and her rads on wednesday. Was good to see her and hear her story, gives you a glimpse into the future and a little reassurance.

Well my dears, I'm going to take it easy for a bit , don't want to tempt providence. Will try to post again later after some ginger biccies for insurance. Hugs to all, xxx
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Re: anyone starting chemo in August?

Christymay that's a nightmare of  a day. Hope you are resting now.

Ju glad you found this session a bit easier thna last time.

Maseo- you can get  a free sample of Gelclair online, it comes within a couple of days.

I am manically cleaning and clearing out this week girls incase on Friday they say, I am starting on Monday x

 

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Re: anyone starting chemo in August?

Glad all went ok Lols, Christymay that sounds painful. although you may not like the idea of a Hickman line it will make your life easier and will mean no needles in your bad arm. Just keep a close eye on the site they used today, any sign of redness, swelling infection get antibiotics for 2 weeks immediately. The actual needle from today won't give you lymphodeama but if it gets infected would increase your risk. Hopefully all will be ok. Georgina, I'm also told gelclair is good, you can get it on prescription, you could also try to suck some fresh pineapple. Debs hope you enjoyed the sea air. Hope all the other Maisies are doing ok today, Karen xx
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Re: anyone starting chemo in August?

Hi Maisie's , Christymay Hickman will save all the bother will be well worth it for you. Just reporting in from second chemo tac2 day 1. Was calmer this time and feel ok at mo bit dizzy and strange noise in ears same as last time , off to sit down for a while, hope to see other dixies posting later all home to roost!!!!
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Re: anyone starting chemo in August?

So it's not only me then! Thank the lord! It will save all this hassle hopefully, cuz I'm so bruised its awful, just want it done rather than messing around! Thanks pen xxxx
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Re: anyone starting chemo in August?

chrissymay, every week i go my first blood test is clotted as im on anti- coagulant injections i asked if there was a prob no no they say its our machine!! luckily thery've a;lways just bout managed to find a vein, eventually. ive got a picc line put in alot easier though bit of a pain as my plaster keeps coming off.

hope you get sorted huni xx

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Re: anyone starting chemo in August?

Hi Maisie's, wat a nightmare! First they said blood was clotted, so did another test today, that was fine, then took 3 diff nurses & 2 hrs to try & find a vein! No luck, had phone doc see if they could use my op arm, she said yes as if not chemo couldn't go ahead, so they did, now I prob get lymphodema! Great! .... Not!!!

now they've decided best option is to have a Hickman line fitted, so dreading that!

Can it get any worse?????

So fed up!!!! xxxxx

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Re: anyone starting chemo in August?

Hi maseo I suffer with sore mouth I had difflam but told nurse it wasn't working and they have given me a huge box of gelclair and it hAs been fantastic no sore mouth this time so do ask xxxx