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October 2016 starters

PeggyCat
Community Champion

Re: October 2016 starters

Hi everyone. Sorry to hear so many of you are having mouth issues, especially at this time of the year when you should be able to enjoy lots of lovely food. 

 

I'm an October 2015 "veteran" and the possibility of mouth issues really worried me before I started FEC-T. The two things that I found really helped were:

 

1. A mouthwash called Gengigel that is available from Boots. It contains hyaluron which is supposed to help facilitate natural tissue healing. It's not cheap - a bottle is around eight pounds - but I was fortunate in that I wasn't too troubled with too many mouth problems throughout chemo aside from the odd small ulcer and a little thrush towards the end of my final T which cleared up pretty quickly. It doesn't taste nasty either.

 

2. I ate absolutely tons of fresh pineapple. For one thing there were a few days each cycle when it was the only thing that tasted good and I had read it's supposed to contain an enzyme that promotes good oral health. I was convincend that once chemo was over I'd never want to look at pineapple again but fortunately I still like it Smiley Happy

 

Hang on in there everyone. This time last year I was in exactly the same place as you are all now and never thought I'd feel normal again. It does get so much better I promise you.

 

Ruth xx

fairycake2
Member

Re: October 2016 starters

hi Angwyd, it may be that i am having the T weekly because my treatment is private through husband's company. I have been told that the weekly treatments are easier to handle but the only reason that i can think of that the nhs doesn't do it weekly is because of staffing costs. This is speculation though. To be honest, it's quite difficult to admit to going privately as i feel rather guilty about it. However, this is the only difference that i have noticed, everything else seems to be exactly the same. If it is true that weekly treatments are easier then I should think there is a strong case to make that you should have them when you get very adverse reactions. Apart from anything else, there's the cost of treating the side effects. But as I said, I don't really know. I start the T in three weeks so will keep you posted. xx

Sus12
Member

Re: October 2016 starters

Angie I feel for you going through all this. I'm only on day 7.....:(. I've tried Fluconazole tablets, gel claire, Difflam mouthwash and spray and now the dreaded yukky Nystatin! Plus regular paracetamol to try and ease the pain and discomfort. Nothing working so far. Going to the docs in the morning as everything has been prescribed over the phone but I want a doctor to actually look and see what is happening. The treatment might still be the same but at least I'll feel like they saw what it's like. They keep just giving me 1 Fluconazole tablet instead of a weeks course which I've read is what I should be having. I agree with you re the T. I was in tears earlier today with my hubby trying his best to console me but I just felt I'd had enough pain and discomfort and like you the thought of going through all this again.....:(. However, I've come this far and it's what they have recommended for me so I don't want to stop the T despite all this. I too would be too scared not to - it's a big risk. I do however want it over with as soon as possible!
I will post any information or anything that I find helps as soon as.
Love and hugs Sue xx
Angywd
Member

Re: October 2016 starters

Hi Sue F

Im still struggling with the sore mouth now and it's day 12.  If you know of or find anything that helps please let me know as I found that nothing helped.  It literally was a case of hoping each day it would get a little better. The thrush has cleared up but it's still sore with the ulcers.    I feel for you going through the worst of it on xmas day, must have been so awful watching everyone tucking in ๐Ÿ˜ฐ  The thought of going through it all again in just over a weeks time is just awful...   I feel,like I'm going to just sit and cry whilst they are doing the infusion cos I know what's coming....and I hate feeling this way ๐Ÿ˜จ

I have a friend who is a nurse and she knows another lady who started T just before me, she has now refused to have the 2 remaining T chemo's as she also found it really hard going.  She is going back to FEC.  Personally I'd be too scared that it would compromise my treatment but I'm definitely going to discuss how hard I found it with my oncologist next week.  I'd rather have more lower dose T chemo's than go through the last 10 days again... 

Angie

xxx

Sus12
Member

Re: October 2016 starters

Angie I think you just meant that you personally have found the T harder than the FEC. We all respond or react to the different drugs and regimes in different ways but it's all pretty difficult whatever regime we're on. None of it is easy and my chemo nurses keep saying that all the regimes are tough and can be gruelling at times but it will all be worth it when we all finish and can get on with our lives :). I've found the T worse so far but I think that Jo's oncologist has a point. .our bodies are still trying to deal with the aftermath of the FEC while we are just starting the T so I guess it makes sense that that could cause problems. Angie my oncologist said that the 2nd T can only sometimes be worse as you are slightly more at risk from an allergic reaction so actually even though they monitor you closely on the first T for any adverse reactions they monitor you even more on the 2nd. But adverse reactions are still not common.
The way I'm feeling with my mouth and throat I don't want to ever have another T ever again but I just need to make sure I get given the meds I need in advance. On this occasion it started on Christmas Eve then worse on Christmas Day with no one to give me anything for it. It probably could have been more preventable. Now it's so bad I find it hard to swallow and my mouth is so sore I can't eat much at all never mind taste anything! I know for the next one though now and will be fully armed!!
Fairycake sending you lots of love and big hugs. I hope everyone finds some good day / times in the coming week to keep us going.
Hugs, Sue F xx
Angywd
Member

Re: October 2016 starters

Hi fairycake
Thank you for support and sympathy, so lovely that we are all in this together.
I'm intrigued as to why you are having weekly chemo and whether that is easier to cope with? Do you know why you are having weekly rather than 3 weekly?
I'm wondering if I could ask for it weekly...
Also, I'm due to have a mastectomy at the end of chemo. Haven't got my head around it yet and I know I'm going to be a mess when the time comes. I can't have the skin sparing cos I'm having radiotherapy afterwards. I can imagine how you feel, all of this is taking over our bodies and it feels like we have no control over it. Sending you big hugs xxx
Angywd
Member

Re: October 2016 starters

Hi all

Jo,  My partner made the mistake of mentioning my next chemo which is next Friday 6th.  I've been trying not to think about it! I was in tears for the next hour with him feeling so bad for talking about it.  I was told by the chemo nurse that the 2nd dose is the worst...but I see my oncologist next weds 4th so will clarify with her. Thanks for the advise about T affecting the wound site, I was getting worried thinking maybe I had another infection.  Have you suffered with blurred vision too?

 

Fairycake and Sue HS thank you for your kind words, it means a lot.  Sorry I didn't mean to sound dismissive of the side effects of the FEC just that I found the pains from the T chemo floored me...literally.  I spent 3 days and nights  just crying in pain.  I know we all suffer in varying degrees and all chemo is debilitating in different ways.  The oncologist did say that if you manage ok with the FEC you are more likely to struggle with the T and vice versa.  I also struggled with the shortness of breath on FEC, it doesn't seem to happen with the T.  Although the hot sweats are as bad as they were with FEC.

 

Thinking of you all ๐Ÿ’

 

Hugs ๐Ÿค— 

Angie

xx

 

7oanne
Member

Re: October 2016 starters

Hi everyone

 

Angywd, I thought it was only me that was dreading the next T, but when I was in hospital and told the oncologist my fear of the next one, he said it's usually the cross over from fec to the T that most people have a reaction from as both drugs are still in your system as some metabolise things slower than others and that the next one shouldn't be that bad (whether or not I believe him only time will tell).

My next T is next Thursday and I'm feeling anxious, ๐Ÿ˜ฑ ๐Ÿ˜ฑ๐Ÿ˜ฑ but I'll keep you posted .

 

Oh also about the sore wound site apparently that's normal as my mx and my armpit felt sore the nurse said its the T affecting your weakness' as if we haven't got enough to deal with.

 

lots of love to all Jo ๐Ÿ˜˜

fairycake2
Member

Re: October 2016 starters

Hi oldDawn, I think mine are different, I haven't started the T yet, have my last EC tomorrow. Also my blotches don't seem to be like an irritation, more like age spots, but ones that have appeared over the last week. So I look even older than my 58 years.

It is getting harder to really believe that my body will ever return to normal, I really hate the prosthesis that I have, it feels so weird, like a lump stuck on my chest. I had the skin sparing mastectomy so they put a silicon, or possibly saline, prosthesis in. I can feel the edges of it under my skin. Plus I have three new scars, two from the mastectomy and sentinel node biopsy and one from where the portacath was inserted. 

Angwyd, you are really being put through the wringer, I am sending lots of hugs and sympathy your way. I just hope it gets better for you, or at least less bad. I know I have been very fortunate so far, though have yet to experience the T part of the treatment. My treatment will be weekly, I don't know whether that will be more or less difficult than the three weekly cycle most of you seem to be having, but will let you know. 

So, the start of a crap week tomorrow, just have to bear it. 

OldDawn63
Member

Re: October 2016 starters

Fairycake2 - I haven't got brown blotches on my face, but I have got red blotches which isn't any better, plus a few spots like blisters/ insect bites (which also appeared on my arms and legs), and sore, red eyes! The skin on my face is also so sensitive that I can't use any cleansers or moisturisers at the moment. I think it must be some sort of allergic reaction to the T (or to the Herceptin or Perjeta), because I had the same problem on the last cycle as well, though not on the first one. The last time it went away after a couple of days, but this time - my final cycle - it is sticking around (it is now Day 16). The spots appear to have responded to the antihistamines I normally take when I get an allergic reaction from an insect bite (allergy relief tablets containing Chlorphenamine Maleate) and antiseptic cream, and have largely gone now. I have also been washing my face in luke warm water and rinsing it in cold water, and have been applying a cotton pad soaked in cold water to my eyes, which has helped a bit with the redness and soreness. I hope it will eventually go away in its own time. Although the antihistamines appear to have helped me, I would not suggest that you take them without first seeking medical advice, because they may not be suitable for you. Your BCN or doctor may be able to suggest something more effective and more appropriate for you.

Sue H-S
Community Champion

Re: October 2016 starters

Hi Angywd

So sorry to read that you are struggling so much. I certainly appreciate some of what you are going through - my gunk was white....I never suffered 'downstairs' thankfully. Luckily enough I was prescribed antibiotics for it, as it was so bad - thankfully did not have ulceration though. So everytime post chemo treatment, when I felt the slightest twinge in my throat or saw the fleck appearing - I took them for 7 days - and got through. And it happened after every treatment. Mind you the flecks were also right down to my gullet - so very unpleasant.

I found that pineapple and pineapple juice helped me.

As you are on the T - are you taking any additional antihistamins, such as Claritin? They do seem to help.

As to T being worse than FEC .....I went through 6 x FEC and although the only bone pain I had was from the Gcsf injections - the super strength hot flushes became nearly permanent and the fatigue is something to behold. I still suffer from fatigue now and also some of the 'chemo fog' symptoms are still with me, too.

By chemo 5 and 6 I could not get around my flat anymore, anything I tried to do made me completely breathless - for the first 10 days post treatment. t is just as debilitating, just in other ways.

Hugs

Sue 

Angywd
Member

Re: October 2016 starters

Hi everyone

Sue F I had the same, my mouth was coated in a disgusting yellow gunk.  Anything I ate was like cardboard with crushed glass and chillies in it.  I was given a weeks course of the tablets for oral thrush.  It went on for a least 6 days like that.  I also had such a dry mouth all the time so painful.  I  had it down stairs too and was given pessary and cream.  That was last Tuesday and I still can't drink hot drinks or eat anything remotely spicy.  I now have lots of ulcers on my tongue ๐Ÿ‘… and the eating thing is really getting me down. Like you the difflam made no difference.   The bone and muscle pains have mostly gone just the fatigue now.  I actually feel like I was being burnt from the inside out.  Had hot flushes, waking up soaked in sweat.  My woumd site also has been twinging.  The thought of the next T chemo brings me to tears, I have never experienced so much pain...๐Ÿ˜ฐ Add to that not being able to eat and even speaking was uncomfortable.  This is definitely the lowest I have been throughout the whole chemo sessions.  I certainly feel that the FEC was easier to deal with.  

That said I did manage xmas dinner ๐Ÿ‘๐Ÿผ and had a lovely day with family.  They took lots of photos and I look so ill.... just want this all to be over now.

Hope you have a lovely time at the panto ๐Ÿ˜‚

Sorry to such a Debbie Downer!

 

hugs

Angie

x๐Ÿ’žx

7oanne
Member

Re: October 2016 starters

Hi Sue,

I had oral thrush on two out of the three FECs and used Daktarin oral gel on the affected area four times a day after food. It seemed to clear up after a few days, but you have to keep applying it for seven days after the white patches have gone (it's a pain I know).  Hope you enjoy the panto and that the symptoms only last a few days (fingers crossed) ๐Ÿ’•

Jo xx

fairycake2
Member

Re: October 2016 starters

Managed a good Christmas but am now desperate for the family to leave! It's hard work keeping it all together for days on end. 

Has anyone else developed Brown blotchy patches on their face? Just to make me feel that little bit better about how i look...

Sus12
Member

Re: October 2016 starters

Hi all. Hope everyone managed a good Christmas and have had a good time with family. My taste buds went completely so couldn't taste anything and still can't :(. Had to get my daughters to check seasoning in things etc :D. Oral thrush set in big time and my tongue feels very very sore as well as my throat. I got fluconozole prescribed - one one off tablet but phoned the doc this am and now have more + some liquid stuff but don't know what that is yet! I have some gel clair sachets to rinse and gargle with every so often but they're not doing anything to help, also got some Difflam but same - not helping.
Anyone know how long this lasts? It's pretty miserable. Wish they'd given me the fluconozole before Christmas and it might have kept it at bay....I'll know next time!
Off to the panto with the grandkids this afternoon but just wish I felt a bit better. The tiredness is worse on this T bit for me.
I also just long to taste something that tastes nice! ๐Ÿ˜„
Sue Fxx
swampy1901
Member

Re: October 2016 starters

Good morning everyone. I hope you all had a peaceful, wonderful time over Christmas. District nurses were in yesterday for my PICC line flush which was a stark reminder that my next chemo is a week today.

Side effects have been popping up as usual but fairly manageable - but a quick snooze (as everyone does!) after Christmas dinner or whatever is good for the moment to help the recovery.

The taste buds are still weird - and I'm sure I've eaten things that I probably shouldn't but what the heck - it's a lottery finding things that are not too metallic tasting that don't give you the trots. But for the first of the T trio - I can reassure you all that there is light at the end of the tunnel despite the fatigue and all the side effects. Keep going everyone!!

 

swampy

 

OldDawn63
Member

Re: October 2016 starters

Afternoon all - I now have date of 19 January for lumpectomy following meeting with surgeon yesterday, so I will soon be joining the Surgery Thread. 7oanne - sorry to hear you had to go to hospital after your last infusion but glad they have sent you home for Christmas. Hope you and your family have a lovely time. There should still be plenty of Christmas food left in the shops, and you might even get some bargains if they have started to reduce the prices.  Sus12 - food shopping yesterday after hospital appointment wore me out as well, I slept very late this morning! Still, it's done now, all I've got to do is cook it! Wishing everyone a restful and enjoyable Christmas once more. ๐ŸŽ…๐ŸŽ„๐ŸŽ

maryminder
Member

Re: October 2016 starters

Hi All

 

Day 3 of my first T and like you Sus12 just very tired due to not sleeping well hopeing to get through Christmas Day at least before any SE kick in.

 

7oanne so pleased you will be at home for Christmas Smiley Happy

 

Wishing everyone a Merry Christmas hope the SE are few and far between for you all

 

Love and Hugs

Mary xx

7oanne
Member

Re: October 2016 starters

Hi All,

Thanks for all the well wishes. I've been in hospital for the last two nights but they have now said that my white blood cell count is now 4.5 up from 0.5 so I can go home. They are just preparing me a prescription of antibiotics and then I'm off. Yey ๐Ÿ˜„๐Ÿ˜„๐Ÿ˜„๐Ÿ˜„ SOOOO HAPPY.  Dont known what's left in the shops food wise but I'm sure hubby will do his best.

Home for Christmas  ๐Ÿ˜Š

 

Lots of love to you all, and hope everyone is feeling better or will be tomorrow ๐Ÿฆƒ๐ŸŽ„๐Ÿพ๐ŸŽ๐ŸŽ‰

 

Merry Christmas x

Sus12
Member

Re: October 2016 starters

Happy Christmas to everyone.
Jo really hope you get home to enjoy your Christmas and hope everyone else has a lovely Christmas Day and Boxing Day and get to enjoy some of it at least with family and friends. I'm on day 3 of my first T....no bad se's so far just tiredness really setting in but hubby has been great and we went to do last minute food shopping yesterday before I felt too exhausted with it all and fell asleep for 2 hours when we got home :D. Hoping the bone pain etc doesn't kick in but I've been given Oramorph in case it gets bad again although I seem to get severe back spasm pains towards the end of my 7 day filigastrim injections. Have more meds to cope with that now + been told to take 4 hourly paracetamol right through then this time. Just hoping the T 'feel like been hit by a train' doesn't appear as my oncologist warned me! I'm lucky that I have family pitching in and I'm so looking forward to having my two girls here for Christmas :).
Hope everyone is ok and se's give us a break a little over these next few days!
Love and hugs to all.
Sue F xx
Angywd
Member

Re: October 2016 starters

Hi all

Jo, hoping that you get the all clear to go home for Christmas and enjoy the day with your family x

 

๐ŸŽ„๐ŸŽ๐ŸŽ‰ Hoping all of my lovely friends on here have a wonderful restful Christmas, thank you for all the support and advice throughout the last few months ๐ŸŽ‰๐ŸŽ๐ŸŽ„

 

Love and hugs

Angie

x๐Ÿ’x

 

Truey
Member

Re: October 2016 starters

Morning Everyone. Merry Christmas!

 

I'm on D4 of my 5th cycle (T) today. Fatigue is setting in but hopefully if that's the worst se then I will be able to cope. My onc didn't want to give me codeine for the Filgrastim pains I had last time - I can't use ibuprofen so really struggled last time with excruciating pain. Instead my injections have been reduced from 5 to 3 (last one today - hurrah!) so fingers crossed as based on last time Xmas Day and Boxing Day are potentially the worst........I don't imagine I will taste anything as my taste stayed bad throughout the first T cycle....but hey ho! Family and friends have rallied round and Christmas should be a cheerful time despite everything ๐Ÿ™‚

 

Best wishes to all of you lovely ladies for a Christmas with as few side effects as possible. We are a strong bunch and together we are getting there. Hopefully 2017 will see us getting back to ourselves a little.

 

๐ŸŒฒ๐ŸŒฒ๐ŸŽ„๐ŸŽ„๐Ÿท๐Ÿพโค๏ธโค๏ธ

 

Sue O xx

suebond88
Member

Re: October 2016 starters

Currently Day 4 post 4th FEC, and not feeling too bad considering.  Hair shedding a little, and nausea under control.  Am surrounded by my family, who have taken over the shopping, prep and cooking ๐Ÿ˜  All I'm supposed to do is relax and enjoy.  I'll do my best.๐Ÿ˜ณ

Wishing everyone a happy Christmas and sincerely hope that the se's  are all under control enough for you to enjoy the day.

Jo, I hope you make it home - fingers crossed.

merry Christmas everyone

xxxxx๐ŸŽ…๐ŸŽ…๐ŸŽ…๐ŸŽ…๐ŸŽ…๐Ÿพ๐Ÿพ๐Ÿพ๐Ÿพ๐Ÿพ

sueBxxxxx

Gracie
Member

Re: October 2016 starters

Just a quick post to wish everyone all the best for Christmas. 

 

Jo, so sorry this is happening to you. I hope you are well enough to get home today.

 

oldDawn - great news about the scan.

 

Everyone else, I hope the SEs are few and far between for you all.

 

Gracie xx

livvy
Member

Re: October 2016 starters

Aww Jo poor you I really hope your home tomorrow,if its any consolation im still suffering after my first T I'm on steroids & antibiotics aswell now but still not feeling any better its grim isn't it๐Ÿ˜ I still haven't wrapped a single present yet! I certainly wasn't prepared for the T effect at all,I'm hoping I get a burst of energy tomorrow if not its tough lol. Take care and hope you have a lovely Christmas despite your challenges.
And merry Christmas to everyone else hope you all have a pain free peaceful Christmas.๐ŸŽ… XXXX
7oanne
Member

Re: October 2016 starters

Hi everyone,  

 

Feeling a bit down today as yesterday afternoon had to go to A and E with a temperature and have been kept in (so close to Christmas ๐Ÿ˜ฎ haven't even done the food shop yet ๐Ÿฆƒ)  apparently my white cells have dropped low and although my bloods don't show any infections I'm on antibiotics iv and more of thoughs dreaded injections.  I have to stay in tonight as well but if my temperature stays normal for  24 hrs I can go home so fingers crossed I don't miss Christmas .  I also came up with a hot itchy rash just under my neck which they think could be a allergic reaction to something hope every T isn't going to feel like this.

 

Hope everyone else is more organised than me and has a Happy Christmas ๐Ÿ˜˜ Jo

k_adams
Member

Re: October 2016 starters

@OldDawn63 I can also recommend Onicolife Drops from LiveBetterWith.com .. Great product and helpful site. Someone got me there ultimate chemo hamper as a gift this year and it made my day!

maryminder
Member

Re: October 2016 starters

Thanks OldDawn, I did ask about moving the appointment to next week but because of the bank holidays there were no spare spaces, so like Sus12 I will be asking questions today and have my meds all prepared, hopefully things won't be to bad.

 

I recieved an appointment for the end of Feb yesterday re a consultation for Radiotherapy, strangly it made me feel a little more positive  a sign that things are moving forward and all of this will end eventually Smiley Happy

 

Hubby and I went to the Theatre last night to see Sunny Afternoon, and like you Sus12 was nice to do something normal, absolutely shattered by the time we got home but so worth it.

 

Merry Christmas and Best Wishes for a Better New Year to you all

Mary xx

 

Sus12
Member

Re: October 2016 starters

Thanks OldDawn. Yes not brilliant timing at all and the chemo unit is closed over Christmas so if there are any problems it's an hours journey to the main hospital! ๐Ÿ˜ž . I've got a long list of stuff to ask them for and I have an out of hours number for the main Hospital which is one of the the Cancer wards basically but they are good. Hoping I don't suffer too much but I already have plenty of pain killers stuff including morphine as I do seen to suffer with the severe back spasm pains ๐Ÿ˜ž Anyway we went out for a Christmas meal tonight just the two of us and had a lovely evening and it was all very Christmassy so I won't feel I've missed out too much on the food front if I dont feel like eating much. It was nice to get out and feel vaguely normal! :D. Didn't have any wine though with having the chemo tomorrow I'll save that for a very small glass of something maybe on Christmas Day :). It will be lovely to have my two daughters here and then hubby's daughter, hubby and the Grandkids. I've got in loads to keep the little ones occupied in case I'm not up to a lot. Hubby is good at cooking so the goose is his job this year with help from the girls. I'm having a year off! :D. We've booked the panto for the 28th for all of us...not sure if I'll manage that but they will all live it and I'll keep my fingers crossed I can go :).
Trying not to worry about the T tomorrow.....what will be will be and it might not be as bad as I'm fearing! Here's hoping.... Thinking of you both Maryminder and Sel84, lots of love and hugs and to everyone on here. Hope you all have as good a Christmas as you can and get to enjoy it as much as possible.
SueF xx
OldDawn63
Member

Re: October 2016 starters

Thanks to all of you for your supportive posts, and sorry for the marathon post the other day - it must be a record! A Merry Christmas to one and all (though you are probably feeling more like 'bah, humbug' at times, I know I am!) ๐ŸŽ…๐ŸŽ„โ›„

OldDawn63
Member

Re: October 2016 starters

Maryminder and Sus12 - what rubbish timing for your first T infusion like Sel84, I am so sorry you have to go through this as well. I am surprised some hospitals think it is a good idea to give patients their first infusion of a new chemo drug so close to Christmas, with all the risks that entails if things go wrong. I can't see what difference it would make in the grand scheme if it was postponed until January. They will have to anyway if your bloods aren't right. Sending hugs, and hope that as well as briefing, you are all given emergency helpline numbers and a bag full of medication to help you deal with the most likely SEs, and most of all, that your SEs are bearable and you manage to enjoy your Christmas in spite of them.

OldDawn63
Member

Re: October 2016 starters

7oanne - I was told I could take Immodium (until the bleeding started, when it was agreed it was best to stop all non essential meds, but that's another story...), but it's best to check with your nurse first. Sensitive moist bottom wipes and moisturiser are essential though! ๐Ÿ˜ฃ

7oanne
Member

Re: October 2016 starters

Hi Everyone,

Day 7 of T cycle and oh my word, I seemed to be attached to the loo! I was hoping that this would calm down and I was foolishly thinking that it would be better than the constipation (how wrong was I) as now it's accompanied with a tummy ache too ๐Ÿ˜‘  Can I take Imodium?  I haven't managed to go for any short walks as I need to be near the toilet.

I can relate to you livvy as the tips of my fingernails also feel like someone's caught them in the door, especially when you grip or pick things up etc.

Also what's left of my hair (from stopping the cold cap at cycle three of FEC) is now deciding to drop out - I was quite hoping that the little coverage I had, would stay, but the armpit hair on my mx side is still hanging in there! Oh the irony of it๐Ÿ™„.

Hope everyone else is doing well and that the SEs subside soon. Hope we all manage to enjoy Christmas and families etc. (albeit from the bathroom ๐Ÿ˜Š)

Jo xx

Sus12
Member

Re: October 2016 starters

Hi all.
Start my first T tomorrow and like you said Sel, it feels a bit like starting chemo for the first time. Am hoping I don't get too many awful se's especially with Christmas being so near. I saw a different oncologist thus last time as they only seem to get locums in for a very short period so there's no continuity which is hard. He was very gung ho about the T but then he's never been through it! My docs could only fit me in at 2.30 yesterday afternoon for my pre chemo bloods and so no results this am when I phoned the chemo unit. I know it's better to take the steroids earlier in the day rather than later or it affects your sleep but the unit said they can do them again now and get the results straight back so I'm off to the hospital....again! :(. There's no way I want to be awake half the night as well as starting the T tomorrow!
Bit fed up but at least I'll have one T over tomorrow. Just dreading what effect it will have on me :(. However I'm determined to have a nice Christmas and just enjoy having my daughters and the grandkids here :).
Hugs to all, especially those starting or having treatment this week. It's so tough but we're getting through it all.
Sue F xx
miss.mc
Member

Re: October 2016 starters

I get the burps too! Thought it was just me.
As usual it's great to have this forum to share & check experiences.
suebond88
Member

Re: October 2016 starters

Good morning everyone,

 

had my 4th FEC -  (4 down, 2 to go), yesterday - went as well as these things go, and as yet am waiting for the se's to kick in....

have been given extra meds to help with nausea - which for me lingers for the whole 21 days in different degrees!  So have been given something to help my stomach lining, as I also burp for England!!  And I suppose the stomach and nausea are linked.  Didn't sleep brilliantly last night, so am planning a sofa day in between doing a few necessary jobs

Good luck everyone with coping with your se's and treatments over  the Christmas period - good news that test results are coming in positive.

it's great having family home too - am loving having my daughter and baby grandson here - but sadly I am also preparing myself for when they return to Oz on NYE, but in the meantime am going to enjoy as many cuddles as I can.

Have a Great Christmas everyone, and sincere wishes for a stress free and se controlled/ free holiday period.

sueBxxx

Sel84
Member

Re: October 2016 starters

Good luck Mary, hope today goes as well as it can.

Old Dawn, thanks for all the advice, sorry to hear you have been suffering but that is great news about the MRI.

I had my blood test yesterday, they found my vein fine so that was a relief. I was given the low down on the T from my oncologist, she didn't fill me with much reassurance but did say that everyone is different.

It's like beginning chemo again, not knowing what to expect. I do now have to have the daily injections which my mum will do for me, as I can't even look at needles, so that will be a nice Christmas present.

I start herceptin tomorrow which will be by cannula apparently my hospital prefer to do it that way at the moment due to the amount of data they have with giving it by injection. I can opt for having an injection which I might need to do as I don't think I can face a year of infusions every 3 weeks.

I wish everyone lots of good wishes and hope your side effects ease for Christmas and hope we can all enjoy the day.

Big hugs xx
Angywd
Member

Re: October 2016 starters

Livy I have exactly the same as you, thrush in both departments! Got the stuff to clear it from my Doc yesterday too so hopefully it will clear in time for xmas dinner!  MUST be the T chemo that brings it on. Didn't want to say so much about the T side effects knowing lots of you are starting it this week but forewarned is forearmed!!

 

Mary, lovely to have your son home, there's nothing better than mum & son cuddles ๐Ÿ’ž Hope the swollen glands and pain in your ear get sorted so you can go ahead with the chemo although if they do postpone it at least you would have a good xmas week.... but if you're like me you will be geared up for it and would prefer to just get on with it.  

 

I seem to have the got the pain under control with the oramorph every 4 hours and nurofen.  Don't like to be taking so much morphine but needs must at the moment.  

 

Slept a a little better last night, 9.30 til 12 then 3.30 til til 8, good job I stocked up on some books! 

 

For anyone who has very sparse eyelashes like me I have stumbled on a brilliant mascara which has an amazing brush which captures the tiniest of eyelashes and makes mine look very long, it's Max Factor False Lash Epic in a gold tube.   Brilliant ๐Ÿ‘€

Love 'n' hugs

Angie

xxx

miss.mc
Member

Re: October 2016 starters

morning ladies,
Just wanted to say good luck at the doctors and with the 1st T Mary. I do hope it goes smoothly. Though if it's delayed, you may have an easier Christmas - every cloud.....
Old Dawn: BRILLIANT news about your MRI results. I am so pleased for you. As you say, that has to be the best Christmas present ever. much love.
I have rather randomly woken up feeling rubbish & tearful this morning. Not sure why particularly. Side effects aren't bad today. Both my daughters have their period so perhaps I'm just hormonal....despite now being 'post menopausal' at 51. ๐Ÿ˜Ÿ
Love to all
Karen
maryminder
Member

Re: October 2016 starters

HI All

I am due to have my first T tomorrow morning and have been reading all your posts, I am trying to prepare myself for any SE but it is quite scary, have got painkillers from my Oncologist and have stocked up on Paracetamol so will start with those as soon as I get back from the hospital, have woken up this morning with a pain in my ear and swollen glands so will be trying to get a doctors appointment to see what is going on.

 

On a positive note my son arrives today and will be staying for two weeks so lots of embarrasing mum cuddles and kisses for him, Christmas dinner this year is Lamb Stew which is already in the freezer so no big meal to prepare on the day so whatever SE i'm having we will still eat (hopefully taste it as well).

 

Will update how it's going, wishing you all a Merry Christmas

Mary xx

swampy1901
Member

Re: October 2016 starters

Hi Truey

 

Yes I'm on the Filgastrim injections for seven days and have had these with each chemo. Last one tomorrow though so hopefully the pains will ease off a little over the next few days and then I shouldn't need to see the district nurses until Boxing Day for my PICC line flush.

I have tried all sorts of different things to eat and drink in the hope that I will find something palatable and apple juice is ok as is Ribenas Winter Warmer to get you in the mood for Christmas!! I might try the ice lollies that someone has suggested. Because taste is so rank it is easy not to bother eating and drinking - I actually went nearly six hours with not eating anything earlier today and brought on a bout of nausea - not good!! So consider myself chastised and will keep drinking plenty of water if nothing else.

 

As for pain relief the oncologist said to start with painkillers as soon as I got home - don't wait for the pain to kick in as it then makes it very hard to get on top of it - start with single tablets and when necessary - up the dosage to two tablets and then if necessary alternate with Ibuprofen or Naproxen at two hourly intervals without exceeding  maximum dosages on any of the drugs. If you need more than that or pain relief isn't working then you need to be prescribed stronger painkillers to get you over the worse days and then you can revert back to your usual dosages if any. (I find when things settle down I don't tend to need anything - so I'm a junkie for a few days then back to normal)

Swampy

livvy
Member

Re: October 2016 starters

Hi everyone
Haven't been on for a few days I didn't want to moan about my troubles when most of us seem to be going through the same Side effects of the T! I for one was not prepared for the bone pain it totally floored me all I can describe it as is someone hitting my bones with a chisel & hammer! From the hips down and random shooting pains elsewhere my oncologist advised me to take paracetamol the cheek!๐Ÿ˜ž thank god I had co-codamol which helped a little bit,ive also got very sore finger tips which feel like they've been slammed in the door.๐Ÿ˜ I had the trots yesterday too which wasn't pleasant.my mouth is very sore and my taste buds are zilch! And last but not least ive got thrush both in my mouth & downstairs and I'm on tablets for that too, oh the joys of T! The upside is I feel so much better today lets hope it continues in readiness for Christmas ๐ŸŽ…. Good luck everyone and I hope your all feeling better really soon and have a wonderful Christmas and we all get a break from the side effects even for just that one day. Big hugs.Xxx
Angywd
Member

Re: October 2016 starters

Hi everyone

Wow Olddawn I'm seriously impressed!  And so glad for you that you are reaching the end of your chemo trail.  My pains which kicked in Sunday night continued to get worse over the last couple of days, was up all night last night in tears and literally did not know what to do with myself.  Was on the phone to my GP as soon as they opened this morning and luckily I am very friendly with my own GP as I am an assistant  manager in a GP surgery in my normal life!   He advised me to double my morphine dosage and I've also started on nurofen joint & back pain which has helped so much, I really couldn't cope with the level of pain in my hips, legs, ankles and feet.  I feel like I've battled all the side effects so far and just got on with it but this one floored me even though my oncologist did warn me...  He has also given me gabapentin which will take a while to kick in though.  My poor mum had to come over and stay over last night and has had no sleep either, she was up ripubbing my legs and feet trying to ease the pains. I still find that I am unable to sleep in the day. 

Like everyone else I refuse to stay in bed all day and get up and dressed no matter what... 

No T trots yet ladies, maybe I've escaped that one! Or it could be the morphine bunging me up.

Would just advise anyone starting my on the T if you start to get pains, get on top of it straight away, not leave it like me.  Don't know why I feel like I don't want to take the stronger pain relief unless I really have to, its just daft! 

Feels like we are all banding together in our determination to have a nice Christmas in spite of what s being thrown at us!

Big hugs

Angie

x๐Ÿ’žx

 

 

OldDawn63
Member

Re: October 2016 starters

Hi everyone and sorry to hear so many of you are still suffering so close to Christmas. I am sending hugs to anyone who is still suffering from their last infusion or has to have chemo close to Christmas, and hoping that for once the SEs will take a break so that you can too.

 

It's the same for quite a few of us September Starters as well, and being further ahead, the cumulative effects are starting to bite (thread's gone a bit quiet again, I hope because they're all off enjoying themselves rather than because they are floored by the SEs...). Having had my last infusion a week ago the end of chemo is in sight for me, which helps

 

It's been an up and down week for me since my last infusion. Although I started off a bit 'demob happy,' it is now Day 8 and the SEs are in full swing, so I am suffering a bit at the moment. The fatigue train, 'chemo brain,' sore mouth and tongue, sore/ swollen throat and dry cough have arrived again on schedule Woman Tongue, although the 'chemo brain' now seems to have subsided a bit. I've now swapped the Paracetamol for Ibuprofen in the hope that it will alleviate the dry, sore and swollen throat, which is now getting quite bad, and I have also started to take the Fluconazole today in the hope that this will keep oral thrush at bay - fingers crossed, it has always worked before.

 

The familiar T SEs have now been joined by a new one, peripheral neuropathy (pins and needles and numb feeling in fingers and toes), which I didn't get with my previous two T cycles. It was hard enough doing household chores wearing rubber gloves, and with numb fingers it's now even worse! This is what I was dreading, because with neuropathy you just have to hope it goes away eventually, as there's nothing they can give you for it. Fortunately, I think it is getting a bit better now.

 

My taste also seems to be affected more than on the last two cycles. I am hoping that things will improve by the end of the week, as they have done on each previous cycle, so that whatever Christmas lunch we have tastes better than cardboard. I won't be pleased if I can't taste or don't fancy the Christmas pudding and cake I made in October and my husband gets to eat it all! The trouble with chemo is that the SEs are unpredictable - and if there's one thing I've learned from my own experience, it is that no two cycles are exactly the same.

 

On the positive side, I have not had any severe joint pain (yet) during any of my chemo cycles (nothing the Paracetamol could not control), the hot flushes and red face caused by the steroids appear to have subsided now, and the 'Tax Trots' don't seem to be as bad (but give them time...). I also received some very good news yesterday, when I went to see the oncologist to review the MRI scan results and the next stages of my treatment plan. He showed us the latest MRI scans on the screen, and the tumour - clearly visible on the previous scans taken in August - is nowhere to be seen! This is probably the best Christmas present I could have had. We will be seeing the surgeon on Friday morning to fix the date of the operation, which we now know will almost certainly be a lumpectomy. Herceptin injections will begin on 9 January, followed by the operation, and I will next see the oncologist on 13 February to sort out the arrangements for radiotherapy and hormone therapy

 

So I have a lot to be grateful for in spite of the sore throat, as things could be a lot worse, and I know from your posts that they are for some of you at the moment.

 

Angywyd - your list of SEs sounds truly awful, and I do hope things improve soon. Can't quite believe your oncologist's 'sense of humour,' obviously he's never had to put up with the SEs of chemotherapy himself... The hot flushes and red face should soon pass, mine have now largely subsided, but be careful what cleansers and creams you use, as you may find like me that your skin goes all hypersensitive temporarily (it does eventually pass). Your sore mouth and throat has obviously come out in sympathy with mine, but with any luck - and preventative measures - by Christmas it will be a bad memory. I do strongly recommend getting a course of Fluconazole tablets from your GP this week though before it's too late, to make sure it doesn't develop into oral thrush. Re: sore and peeling feet, I suggest you also check this out with your GP or BCN, because it could be the start of 'palmar-plantar' (hand-foot) syndrome, which is a listed SE of T (see: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/docetaxel and http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/side-effects/... My feet started peeling during the first T cycle, but it wasn't too bad, and they have now improved. I don't know how much that was due to luck, or preventative measures. I've been applying various foot balms (whatever I could get basically!) twice a day since my FEC cycles. I am currently applying CCS Swedish Formula foot cream (costs about ยฃ6.00, says it is suitable for diabetics, I got it from my local Lloyds chemists). It is the best foot cream I've tried so far - my feet have definitely improved after a couple of weeks of applying it. It smells faintly medical which may be a bit offputting, but it really does help soften the skin on your feet. Re: nail and hand care, I can recommend Onicolife Drops (specialist product for damaged nails, including nails damaged by chemo and rads, unfortunately not cheap, around ยฃ15.00, and only available from Live Better With and you probably won't get them by Christmas now), otherwise, any oil or oil based cream that you can apply to your hands and nails should help minimise drying out and damage - try Dr Organic Tea Tree anti-fungal nail solution (cost around ยฃ5.00, paraben and pthalate free, and available from Holland & Barrett) and either Body Shop Almond Oil Hand Cream (good but costs around ยฃ10.00, though I got it half-price on special offer, also not paraben/ phthalate free) or Palmers Coconut Oil hand cream (very good budget option, costs around ยฃ3.00, is paraben/ pthalate free and and available from most large supermarkets). 

 

Fairycake2 - hope you have managed to order the essentials online in time, but please don't worry about the presents and cards, this is not really what Christmas is about! I'm sure your family and friends will understand why you can't do it this time, and would rather have you happy and not feeling stressed about it.

 

Gracie - sorry to hear you are having to battle an infection as well on top of the chemo. Glad your oncologist has had the sense to postpone your T because of this, as it will give you chance to recover and prepare for it, and you will also have some 'good days' at Christmas with your family after all.

 

Livvy - hope you're OK.

 

Kaz58 - I know exactly how you feel, I also felt like that immediately after my first T infusion. For three days, apart from the hot flushes, everything seemed fine, no nausea (yay!), go out for the day and eat a big piece of chocolate cake at teatime - then...wham! Hope the pains and fatigue subside by Christmas, and at least you know you are being looked after.

 

missmc - hope your nausea, taste changes and 'loose tummy' improve soon, and that your first T isn't as bad as you fear - at least you know what to expect and can prepare.

 

Sel84 - sorry to hear you are having your first H and T infusions this week so close to Christmas, and yes, unfortunately you do have to stay in the hospital for ages while they give you the first infusions, because you have to be monitored for possible allergic reactions. It is just a precaution, as they are rare, but it is a nuisance all the same. You'll also have seen that the SEs can be rotten and that they usually kick in a few days after the infusion, so the timing couldn't be worse. There's not a lot you can do about some of the SEs, but there are things you can do to minimise the skin and nail changes, such as make sure you apply moisturisers and hand and foot cream twice a day, and apply some suitable oil/ cream to your nails (see advice to Angywyd above). There are also things you can do to minimise the risk of mouth infections and relieve the dry/ sore mouth and joint pains you are likely to get (see my previous post of 12/12/16 below, which I have today updated). I hope they have given you an emergency helpline number to contact over the holiday period - otherwise you will be relying on BCC helpline, NHS 111 and A&E to pick up the pieces if things go wrong. And make sure they give you suitable anti-sickness medication, stronger pain relief incase the Paracetamol isn't enough, plus medication for sore mouth and throat/ to prevent oral thrush before you leave the hospital. Otherwise, all I can offer is sympathy, and hope that things will not be too bad.

 

Sus12 - hope the nausea is better now and that you have not been plagued with too many other SEs.

 

Swampy1901 - sorry to hear the taste changes and 'Tax Trots' have arrived, but you may find things improve over the course of the cycle, so let's hope that by Christmas the worst is over. There's not much you can do about the taste changes, other than eat whatever you fancy, but there's still time to get some Immodium and Andrex sensitive bottom wipes for the other thing if you haven't already! Also watch out for the dry/ sore mouth which may arrive later, though I hope you escape.

 

Truey - one down, two to go, but you will get there. Glad you are coping with the SEs from your first T thus far, except for the fatigue, which I'm afraid gets us all, the back pain, and the awful taste changes. The taste changes seem to have been cumulative for me, and have got worse since my last T infusion. This is not a SE you want this time of year, when everyone else is stuffing their faces with traditional Christmas fare, but all you can do is eat and drink what suits you. The only thing I've found that helps with the fatigue (and this confirms the standard advice and what other September Starters have said) is to make the effort to do some gentle exercise when you feel up to it, without overdoing things. For example, do some light housework or excercises at home, or get out and have a short walk whenever you can, even if it is only down the road and back. It's a bit of a struggle at first, but I find that once I get going, I feel a lot better.

 

In my experience Days 3 - 11 of the T cycle are probably the worst, and things have generally got better after that, so hopefully for those of us who have got some bad SEs now, there's still time for things to improve by Christmas. If I don't get chance to post on this thread again before the holiday is upon us, I wish you all a merry (and SE free or at least SE-lite) Christmas. XXX

Truey
Member

Re: October 2016 starters

Hi Swampy,

 

I can completely relate to what you say. The taste thing and fatigue are much more intense on T. Like you though, I have made myself get up, dress and shower ( not in that order!) every day. Did skip the make up and  post- surgery exercises a couple of times but managed to be idle on the sofa rather than in bed. Also keeping eating despite the awful tastes. I've found onion, garlic and leeks are the worst so am cooking without those right now.....

 

Are you having Filgrastim injections with T?

 

Sue X

swampy1901
Member

Re: October 2016 starters

HI everyone

I'm not enjoying this at all - the side effects from T are much harder to live with aren't they? The mouth makes everything taste rank!! I tried a bacon sarnie this morning and it smelt great but tasted bleuggh! I still ate it because you need to eat anyway but I'm sure cardboard would have tasted similar. lol!!

The fatigue is workable - do something then take a break for 10...........20 mins........... I'm sure you know the drill lol!

But throughout all the chemos I have always got up, showered, dressed etc even if all I do is sit around - the thought of wallowing in bed has no appeal at all unless I'm sound asleep. I realise others do need to take to their bed and whatever works for everyone is the maxim you must be guided by.

The tax trot introduce itself yesterday which was an all day thing of working through the whole cycle from constipation to run............!! But today much more settled and if it's possible I do feel slightly better - had the odd snooze but it's interesting to see how we are all affected by the side effects - some side effects affect us quite substantially. We can breeze our way through some but are floored by others but we can all understand where we are coming from.

Chin up folks - this is doable!!

 

Swampy

miss.mc
Member

Re: October 2016 starters

Morning all,
Sorry to hear so many of us are suffering even more; the side effects seem to have really ramped up. ๐Ÿ˜ฃ I'm making a mental note about the ice lollies - if all goes to plan I should start my accelerated T mid-late January. Have to say it all sounds pretty sure scary.
Gracie I hope you have a lovely time with your folks; it's lucky that they are coming at a time when you will hopefully be at your best.
Sel84: enjoy Christmas dinner at your sons. Could be quite nice to have someone else do the work for a change if, like me, you always end up hosting.
Good luck, and wishes & prayers that side effects reduce enough for us to enjoy at least some of the festivities.
Happy Christmas to all the amazing women who make up this super support group.
Big hugs
Karen xxxx
Kaz58
Member

Re: October 2016 starters

Hi everyone. I've not posted for a while but have been logging on everyday to catch up. Glad I have because it's so comforting to know everyone else seems to be experiencing the same side effects to some extent or other. I had my first T last Thursday and all went ok on the day. Friday morning I felt fine, even ventured out for  a coffee, pleased that I had no nausea that id had with the EC. However my smugness was short lived as yesterday the fatigue set in and today I ve been hit with the proverbial train. I am aching all over and have the most ficious sharp stabbing pains occurring randomly. The area around my MX is really sore , my mouth and tongue are both sore and everything tastes awful. I'm taking paracetamol which is helping a bit.

So, have just had a duvet day( thank goodness for Net Flix) and seeing what the next few days brings. Angie you're not the only one buying the ice lollies ! I've found these and jelly have helped a lot even with the EC.

Its the first time in years that I'm not cooking Xmas dinner this year as we've been invited to our sons so just hoping that things have improved by then so we can all enjoy the day. Thanks to everyone for the support I've found on here and I know will continue. Really hope you all have the very best Xmas you can ,, wishing you a very happy Xmas and best wishes for 2017.  Karen x

Gracie
Member

Re: October 2016 starters

Oh blimey, Angie, you really are being put through it. I was told that people tend to tolerate T better, but you seem to have gone through one lot of horrendous side effects to another. Do you like tonic water? Apparently it's good for bone pains due to the quinine. I have no idea whether that's true or not but I drink loads of it due to the taste and, following my first awful experience of the bone marrow injections, I have managed the pain really well with pain killers and clarityn, but perhaps the tonic water helped.

 

I saw my oncologist today and my first T, which was due to happen on Wednesday, has been put back a week, as she reckons I'm not well enough to tolerate it, especially as we have no idea how I'm going to react to it. (I'm probably going to be like you, Angie). I thought I would be upset about it but, instead, I'm really relieved. Although, generally, it's all gone very well and my bloods have been really good, it's been relentless as far as nausea is concerned and, more recently, fatigue. Getting a cold/chest infection on top has been utterly miserable. Now, my elderly parents who live away and who haven't seen how ill I can be, will see me at my best when they come to stay for Christmas.

 

Hmmmmm - chocolate tea? That sounds interesting.

 

All the best to those of you who are having chemo this week

 

Gracie xx

Truey
Member

Re: October 2016 starters

Gosh, Angie that sounds like a challenging set of SEs!! 

 

I certainly had had far less than that on my first T cycle. However, my tumour was her-ve, so I haven't had Herceptin. It must be so difficult to tell what is causing the SEs.......

 

Are you getting Filgastrim injections? I had my pre chemo 5 check today (next T on Wednesday) and mentioned to the nurse that most of my SEs seemed to come from them - including really harrowing back pain. She did say they weren't compulsory and we decided to see what level my neutrophils are at now before deciding whether to do them in the next cycle. If I do have them, I have asked for better pain relief!!

 

The T seems to make me much more fatigued than on FEC and my taste disturbance has stayed for the entire cycle. ๐Ÿ˜Ÿ

 

Hugs to you and I hope you start to feel better soon, will be thinking of you.

 

Sue XX