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anyone starting chemo in August?

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Re: anyone starting chemo in August?

just answered your post on fb Sam

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Re: anyone starting chemo in August?

Well girls i think my time has come. Had a phone call from the hospital this afternoon asking me to  go for an ECHO tomorrow at 9 as the oncologist wants it done before Monday- looks like Monday could well be Chemo no. 1 day for me! Now I will **bleep** myself!

xx

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Re: anyone starting chemo in August?

Hi all

sorry been out all morning so just catching up.

 

Christy I didnt get your pm  Ive only had one form Meg.

 

Genevre seems people have already told you how to send pm so feel free anytime you want

Lols was getting worried then saw your post so glad you are okish apart from the nausea and smells ie the usual suspects

Dee think you doing right thing ringing onc as you should be coming out of bad week now and you want  to get at least some good days b4 next session.  Fingers crossed you are ok

Venice/ Gill  not used cold cap but ladies have given youi good advice espcially re the strength of the Epirubicin I think, thats what should guide your decisiona nd if it was beraable last time

Roller hope you manage to get in some zzzz this afternoon

Hope thats everyone apologies if have overlooked anyone - Gilly I will catch you on FB or text

 

I just been for reiki cant say it did much but I came out relaxed at least.  feel very tired today on day 3 and it doesnt normally hit me til days 4 and 5 so maybe its a build up iof three cycles or maybe cos Im getting up earlier to get Rafa ready for school and walking the dog etc.  Normally would go to zumba tonight but feel like maybe too tired.  On other hand it might wake me up a bit - decisions decisions.

 

Hope everyone else keeping well -  getting bit worried about the number of people who seem to have dropped out since forum changed not just on this thread but on July also.  You dont know whether its cos they are struggling or dont like new format etc.  Alix if you can email me the list of maisies when you get chance as I know you below par at moment I can try and cross refer those that are on fb and those that are on here and can identify any mia that nobody has heard from. 

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Re: anyone starting chemo in August?

Hi venice25, I seem to be on a big dose of epirubicin, its 120 mgs. My hair didn't start falling out at all until day 17, then it was just strands that got more often, I could tell it was getting thinner overall. Then on day 21, when I got up in the morning it was coming out much more, then when I got in the shower it came out in big clumps, there was so little left it looked ridiculous so my daughter clippered it for me to no 3. I've been wearing beanie hats most of the time since then, apart from anything else your head feels cold! Whats left is rubbing off inside the hat. I haven't used the cold cap at all, don't want to run the risk of any stray cells being left behind, also didn't fancy sitting there for 5 hours. Hope this helps you decide what to do, its your decision that counts. Thinking of you and you know we are all here to support you whatever you decide, huge hugs xxx (i know its a painful decision)
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Re: anyone starting chemo in August?

Hi Gill I don't know if it helps but I am on EC cycle 2 day 14, my dose is 90 of the epirubicin. I lost quite alot of hair coming up to 2nd dunk but since the second it seems to have slowed down alot. My hair was quite thick to start with and I can tell the difference but my OH said he can't tell. I am going to see how I get on after 3rd dunk next week. I hope this helps and if you want me to keep you updated just ask hun x x

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Re: anyone starting chemo in August?

Gill do you know what strenght FEC you are having?

If it it FEC 100 you stand little hope of keeping your hair even with cold cap

If it is FEC 75 you have a chance of it just thinning alot but not losing it all

If it is FEC 50 you have a very good chance of keeping most of it.

The different doses are the amount of Epirubicin you are having and that is the one that makes you lose your hair.

If you dont know its worth asking then you can make an informed decision on whether to carry on with it

xxx

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Re: anyone starting chemo in August?

hI everyone

in  a quandry re carrying on with the cold cap.I am having 2nd chemo friday 13th I have still got my hair but is shedding not coming out in clumps but in strands, not had any loss on my pillow but coming out in the shower and if i run my hands through it strands do come away.  I am undecided weather to carry on with the cold cap or just take the plunge and get it cut off . Anyone having the cold cap can give me some advice is it working as i havent lost any noticable amount of hair yet or am i kidding myself . Having FEC x 6 am going re -wig tomorrow dont want to wear scarves  any input would be gratefully received. Am still checking on posts but having to reset my password each time i try to log on which is a pain Thinking about you all love Gill

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Re: anyone starting chemo in August?

Fingers crossed Dee it is just a case of you resting up hun, sending a hug  your way. Yes please let me know how you get on, I have sent a pm with my mobile number in case you need me or just to let me know how you get on as I will be going out shortly x x

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Re: anyone starting chemo in August?

Thanks deb to be honest after I've got through first 6 days I carry on as normal I really do try not to let this stop me doing Anything however even after a good night asleep I feel very tired and weak so am waiting for a call back off oncology team at the min will keep u posted xx
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Re: anyone starting chemo in August?

Morning maisies, I hope you are all coming  round abit now, sounds like there will be some napping later on this afternoon. I speak from experience lol! I start off well then by mid afternoon I need a 'pensioners nap' for a hour.

Dee I have been ok hun just tired and a constant runny nose but no cold. Do you think you did too much yesterday maybe thats why you were dizzy, but worth a phone call if you are worried hun, let me know how you get on.

The tablets have helped with the indigestion but i still have wind as soon as i eat anything, thank god I'm not alone, oh the joys hey girls!

I hope any se's are minimal today gilly and glad you have had a good brekky. Genevere you can pm me if you want to hun the same applies to any of the maisies. I can't remembet if any at the bar today but if so good luck and also to any with appointments.

Have a good day ladies x x 

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Re: anyone starting chemo in August?

Morning Maisies Fec 2 day 14 , had good night sleep but yhen I'm on sleeping tablets infact woke up late for school but Callum still made it on time lol. Still got snotty nose and very tired , not sure whether to phone in and check in with nurse I don't feel Ill though I think my bloods are just low??? Just having a pj day today , roller I'm up to the bar next thurs 29th and I'm glad you said about wind mine is horrific lol. sorry we had people on the night shift and hope nause and sickness stays away for you all rest up , christy I am the opposite to u Hun whereas u can't eat I seem to scoff my own body weight in 6 days lol , re steroids I take mine at 7, 11, and 3 now , nurse said 8,12 and 4pm but that was still too late for me xxx
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Re: anyone starting chemo in August?

Morning Maisie's, poor sleepers girls, I was on and off too. Steroids and nausea!!! Smells are terrible and ears buzzing , but I suppose it will all pass. Have a good one Maisie's, won't be long Sam and you will be propping up the bar yourself.. Hope everyone feels a bit better today. Good luck if up at bar. Chezz only just seen txt had phone on silent thanks Hun. Meg don't work to hard !!!! Xx ju
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Re: anyone starting chemo in August?

Morning Maisies,

Seems a few of you are struggling at the moment which is awful. Do you think it is beacuse when you start and have session 1 you are all  geared up to it even if you are worried and then by session two its a bit of  come down. I am not sure as I still have started mine.

Christymay, that's awful that yours has been postponed for so long , of course you just want to get it over and done with.

Roller not good the not sleeping, I am currently on nightwatch due to combination of OH working away and I think I am  subconciously getting sacred of the imminent start of chemo.

Have  agood day ladies xx

 

 

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Re: anyone starting chemo in August?

Morning Maisie's, I had one of those nights too, shattered drifted off at 10, awake at 2.25, then couldn't get bk off, eventually did not sure wat time but awake wen OH went to work at 4.45, so been waiting for my phone to charge cuz of my chemo brain I put charger in phone but forgot to plug it in!!!


just took my meds so lying still for a while as if not I feel sick, how do they expect you to take steroids with food? Most I can manage is a ginger biscuit & that's a struggle!

Hope all you lovely ladies are feeling better than yesterday & can get through today a bit easier xxx
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Re: anyone starting chemo in August?

Roller, I was up with you at 4am, but stayed in bed on my phone and I cant post on here from my phone. I was so nauseous last night, god knows how I didnt hurl. So I went to bed at 10pm and crashed out. Woke at 2am hugry, went back to sleep, woke at 3 hungry, went back to sleep again and by 4am I was wide awake and starving but didnt get up until 7am, I think I managed to doze again for an hour. The smells thing is horrible, it was just lillies and perfumes last time, but last night every smell would have made me sick I think.

So far have the appetite of a horse today, which is how I was last time, so I hope that last night was a blip.

Hope all you girls have a good day and that no one is suffering badly xxxx

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Re: anyone starting chemo in August?

Morning all, rollarcoster hope you manage to have a cat nap later. Christymay I will have been delayed by 10 days. There was a bit of a discussion as to whether I should go ahead but in the end they decided that if I inject with the white cell stimulating stuff it should be ok. Your wait does seem like a long time, that must be so frustrating for you. Don't worry you will not get left behind and we will be with everyone until the last dunk and beyond. Dee hope your feeling better this morning and no more fainting episodes. Hope all other Maises are doing ok xx
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Re: anyone starting chemo in August?

Fec 2 Day 3

As you can see from the time, I didn't sleep so well tonight. I couldn't stay awake past 9pm but was awake by 3:30, RAH! Oh well, just have to have a nap later I suppose! I guess since nobody else has posted yet today you're all managing to sleep, well done!

Christymay, what a real pain in the bum! Nobody wants to do this but since we have to we want to get it over with, still as my onc said, it is a long hard road but we will get you there, and they will. We have to just ride the bumpy road as long as it lasts. At least you will have a little while of feeling more normal, make the most of it hun.

Debs, thanks for the info on the acid tummy, will defo go see gp today. I have wind pouring out of every orifice right now too, no good for any social life I might be able to enjoy!

Breezey, i can empathise with you on the fainting/ dizzy spell, I had that on day 17, not what I expected at all. Thought the 3rd week was supposed to be the good week, got a bit fed up with everything then but it soon passed and had a good few days before 2nd trip to the bar. Hope youbfeel better now too. When is your next dunking?

Genevre, to do a pm go to the avatar, (character picture) of the person you want to pm and you will see the option to send a pm to this person. Don't know if anyone has told you this already but the more the merrier, and never feel embarrassed to ask. Nobdy minds and we are all suffering with chemo brains anyway! I totally agree with you about having young children to look after, I just couldn't manage that. In fact we are playing role reversal, my little girl (30) is looking after me and doing a cracking job, she is tuned in to my brain. Thank goodness for that!

Gilly, the smell thing is horrible, lots of things I usually love I can't stand right now, even foods. I can't bear bland or sloppy food, it has to be a strong taste but not necessarily too hot as in spicy. Finding pasta sauces about the best so far, but keep experimenting. Think OH is going to try a mild curry tonight, that should be interesting!

Well, sorry if I've missed anybody, its not intentional and I hope to catch you next time, sleep well, hugs to all xxx


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Re: anyone starting chemo in August?

Thanks genevre, it's so nice to have people who know exactly how we are feeling isn't it,

I'm going to try & get some sleep now, wishful thinking!! But a girl can try!

Night night my amazing Maisie's who have helped me in the worst chapter of my life xxxxxx
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Re: anyone starting chemo in August?

Annie and all paintsripper sufferers– just been to GP who has prescribed biotene – saliva-replacement gel you put on the tongue and spread round mouth – it’s really helping.

Cheezap thanks! I’d like to be in touch by text/pm with a few people - embarrassed to ask, but can you tell me how to do a pm?

Pendragon, sorry you’re feeling depressed, you’re going through such a lot.

Samj- thanks for kind words. It’s so unfair not being able to sleep, when that’s the one thing that might make us feel better.  So sorry for Maisies who have young children.

Gilly good luck with se this time

Christymay, at least we’re all in this strange cancerworld together! So sorry about all the upsets you’re having.  What a medical marathon we’re all going through.

All Maisies- thinking of you tonight as we try to sleep....xx

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Re: anyone starting chemo in August?

No christy lol that made me chuckle , just having a quiet few days deb how are you as we are both day 13 , I am normally fine after day 6 so this has come as abit of a surprise x
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Re: anyone starting chemo in August?

Chez I have pm u bk,can u let me know if it works please xxxx

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Re: anyone starting chemo in August?

Thanks debs anything worth a try xxxx
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Re: anyone starting chemo in August?

They haven't given me the next date as I have to wait for worcs to fit me in for Hickman line to be fitted then check bloods ok, bloody hassle
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Re: anyone starting chemo in August?

Cheeky Dee you talking bout me lol
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Re: anyone starting chemo in August?

Evening ladies sorry to hear a few of you are having a rough time if it.  Christy first cycle I struggled with real bad acid and indigestion but gp prescribed lansoprazole to take first thing in morning and I have bern fine since maybe worth a try! Dee sorry to hear you had a dizzy spell hun you rest up.

Sorry if  I've missed anyone out but I hope you all start to feel abit better soon and get a good nights sleep x x

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Re: anyone starting chemo in August?

Roller, I had to turn out lillies as they made me really nauseous. Other perfumy smells affect me too, so you are not alone xxx

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Re: anyone starting chemo in August?

Pain in the bum not on lol x
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Re: anyone starting chemo in August?

Oh bloody hell Hun what a bloody pain on the bum so what date is your next chemo? Looking forward to us meeting up next week 🙂 x
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Re: anyone starting chemo in August?

christy have sent you a pm to test it works

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Re: anyone starting chemo in August?

Because I have to have a Hickman line fitted have to wait for blood count to be ok & then leave it a wk, so frustrating, just want it all to go to plan!!

It's never plain sailing is it?

it's a very strange place to be in this chemo world!! My mind is boggled!! xxx
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Re: anyone starting chemo in August?

Christy how come your chemo has been delayed hun? U never said on phone? Am worried now cxx
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Re: anyone starting chemo in August?

Fec 2 day 2

Hi christymay, smells affect me too. Someone brought me some star lilies, they were beautiful but the smell was so nauseating i had to put them outside. Also daughter was spraying her deodorant this am, it got me nauseous again.
Sorry to hear you've been delayed 4.5 weeks, what reason have they given you for that ?

Does anyone else get a burning glow in their gut alongwith a weird taste in the throat? If so what do you do or take to ease it? Might go and see gp tomorrow,,see if she can give me something to help it.

Well my dears, lets hope we all get a good nights sleep tonight, it always helps us to feel better when we do.
Lots seem to be having a hard time this week, hope all soon feel better and ses go away quickly, huge hugs to all xxxx
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Re: anyone starting chemo in August?

Have pm u christy , yes smells affect me in the first few days. Well ladies I should of been cheering my eldest son on his football final this evening but instead I'm in bed, had a dizzy spell earlier and am so tired so guessing my bloods are low so resting up , I am Fec 2 day 13 hope everyone else is doing ok x
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Re: anyone starting chemo in August?

Spikeyred how long was your chemo delayed for? Mine is put off for 4.5 weeks & I am worried about it? Xxxx
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Re: anyone starting chemo in August?

Evening Maisie's, I did speak too soon, felt ok til bout hr ago, decided to come downstairs but big mistake, think its cuz I kept still all day & OH cooking his tea so I'm going bk up to bed! Do smells affect anybody else?

Can somebody plz pm me so I can see if it working xxxxxx
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Re: anyone starting chemo in August?

She did mention the Emend but must have been so much worse than that. Will of course pass on regards for everyone x
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Re: anyone starting chemo in August?

Evening Maises, A few of you seem to be having a really tough time this week. I'm really hoping that things start to feel a bit better soon. really hoping that Barbs is home tomorrow. I have been given the go ahead for chemo next Monday. Will be good to get another under my belt, it seems to have been ages because of my infection. Wishing you all a good night sleep as good as roller coaster and hoping no midnight cleaning of draws. Xx
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Re: anyone starting chemo in August?

Thanks for letting us know french fancy, please send her our best wishes. I thought she was having Emend this time xx

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Re: anyone starting chemo in August?

thanks for letting us know we were asking about her on FB as she usually posts on there too.

 

Please send on our best wishes to her for a speedy recovery

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Re: anyone starting chemo in August?

Hi Maisies, just popped in from the Stars.
Gilly was asking about Barbs and just heard from her. Despite an ok start when she got home yesterday, she wasn't able to get sickness under control so in hospital at the moment. She thinks will be back home tomorrow though. I thought it would be good to keep you in the loop and I've also told her you've been worried as you hadn't heard from her so she may well pop in as well.

Hope you're all doing ok ladies xx
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Re: anyone starting chemo in August?

cheers thats really helpful thanks for letting me know what to expect xx

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Re: anyone starting chemo in August?

before my taxol i have a cocktail fed in as a pre med so not too sure wats in there i asked but got told dont you worry bout this!! i usually just feel bit wired for a few days and then come down for a day and then i'm okish but as i say this week ive been so v v tired all the time, might just be cos im on week 4 supposidly come thursday so se's might have just built up over the past few weeks. this weekly waiting for the blood tests to come back is usually my only prob, the yes or no business. didnt mean to scare you and as i say usually im ok , the only meds i get to take home are anti-sickness which have worked very well. please let me know how you get on, yure more than welcome to pm me too xxxx

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Re: anyone starting chemo in August?

ah Ang thats what Im having too a lower dose but every week he said the SE would be less that way now Im not so convinced.  So do ylou not have steroids b4 but piriton instead?  Thats another reason I was switched to that as was originally meant o be th eother dreaded tax one.  Ive one more of EC then the weekly stuff starts on 21st october am dreading it as havent been too bad on the EC apart from first week of first cycle.

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Re: anyone starting chemo in August?

hi chzzap, mines a lower dose over a longer time cos of my heart probs, the se's seem to have built up this week and are hitting me from every side. just wish i could get some quality sleep, might make me feel better. maybe my body just couldn't cope with the herceptin as well cos haven't felt this bad before. moaning again girls, im sorry xx

 

hope everybody up at the bar is ok and chillaxing, ill be coming down in the night to watch old shows ive recorded if no sleep for me, i might ask for some gelclair as the taste is awful!!

 

thanks for everyones concerns love to all x

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Re: anyone starting chemo in August?

Roller just got back so will text you in a bit

 

Ang Im staring weekly Paclitaxol too with herceptin every third week.  Is yours a low dose paclitaxol or the full whack??

Sam enjoy the pasta bake  my dear

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Re: anyone starting chemo in August?

Glad ur doing ok Gill xxx
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Re: anyone starting chemo in August?

Hi regarding the sore mouths I've had difflam but as others have said it's temporary relief , so I told chemo nurse and she got me a huge box of gelclair on pescription and it's been fab, it coats your mouth and as soon as my mouth started feeling odd o used it and so far so good xx
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Re: anyone starting chemo in August?

Hi guys, back from number 2. Feeling ok so far, just a muzzy head and funny ears and a bit of a headache so far, so chilling with OH watching telly.

Hope everyone else is doing ok this afternoon

xxxx

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Re: anyone starting chemo in August?

Hi Maisie's, I've had not a bad day with se probably speak too soon, just been resting in bed as think all meds making me feel weary but def better this time on day 2, think the emend might be helping, as managed tiny bit of melon without being sick, didn't eat anything first time for first 4 days!

Onwards & upwards as everybody keeps telling me, really getting on my tit! If only they knew! Rant over, & last dose of steroids today coming up, 2.5 hrs early but I can't cope with no sleep so I being naughty & doing it!!

Poor you pen sounds like you having really bad time of it, I hope & pray you soon feel better lovely, I think the pm thing is a good idea but mine won't let me xx
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Re: anyone starting chemo in August?

Angie sorry you are not feeling too great. I am not surprise dthough it's a really harsh regime you are on, it is bound to take its toll on you. Sorry to hear you were  cleaning out cupboards at silly o'clock. I was wake for hours in the night and i had taken diazepam.

Paintsriper is obviously a commen side effect. Doe steh gelclair work for that?

Geneve hop eyou are ok. We all have down days and I know it doens't matter what anyone says on those days  it rarely helps. All I can say is try to  remember something good or look through some old photos that might cheer you up. x

Rollercoast I am so jealous of your sleep- I was up for hours in teh middle of the night. Watched 3 episodes of one born every minute, that was after dimissing a few films and getting a snack at 2am- I do not normally eat at that hour.

I dilue the Laimon drink with sparkling water, thats nice too.

Right chicken and ham pasta bake to cook, chat later ladies. xxx