64899members
341919posts
cancel
Showing results forΒ 
Search instead forΒ 
Did you mean:Β 

December 2019 Chemo Starters

Highlighted
Member

Re: December 2019 Chemo Starters

Can I have some advice please ladies? I had EC 16 days ago and have made a good recovery (next one is planned for next Monday). I had 3 injections for the white blood cells last week. My son has been complaining of a sore throat (nothing too serious) but I've now developed a sore throat too. Again nothing too bad and no raised temperature but I'm still cautious. So I phoned the unit where I'm having treatment to ask if I needed to do anything (blood test, ABs or anything else) and the woman made me feel really stupid saying you don't need to panic, sounds like you've caught a cold, there are a lot of colds around at this time of year, bla bla, bla. She said if you're really worried call your GP which I think I will do for peace of mind, but am I overreacting? Being silly? I know it's not the most critical period as my own immune system should be on the up but I'm cross she has made me feel like a total hypercondriac (which I'm generally not!).

Highlighted
Member

Re: December 2019 Chemo Starters

Hello MrsS 1968

 

oh that’s so weird and unsettling ... could you check with your breast care nurse. 
i am due to go on Paclitaxel too and chemo unit told me I will only have 6 rounds - which I know is not correct as I will have 12 (😱) So sometimes we need to be on top of it - they are very busy... 

have a good day all - last AC for me later on today 

aurore

Highlighted
Member

Re: December 2019 Chemo Starters

Lady34 the regimes seem to vary ever so slightly. I am also feeling a little vulnerable as the pharmacist assumed I was going to docetaxel, not paclitaxel so dispensed steroids she shouldn't have and gave me the prescription for docetaxel, so I am unsure what I will be having and hope they prepare the correct chemotherapy drug for the 20th! Think I will have a word with the pharmacy manager when I go for bloods tomorrow. Hope you feel better soon x

Highlighted
Member

Re: December 2019 Chemo Starters

Thanks Madcatlady- I think my sister caught up on about a year of TV/ movies!!! I really hope you don't suffer too much with the SEs xxx

Highlighted
Member

Re: December 2019 Chemo Starters

Hi Lady34 

Glad to hear you're home - take care and try and relax.

Being in hospital is not easy and it's bound to make you feel vulnerable.

xx

Highlighted
Member

Re: December 2019 Chemo Starters

Hi Mrs1968 thanks for asking I’ve been home 2 days just catching up on sleep dosing trying to eat and relax. 

Minds boggling reading your posts on round 4 some on injections some not? All on steroids?

not sure what I’ll be I’m on Taxotere. 

Already feeling nervous of next round but guess I’m feeling vulnerable after my hospital stint 

Hope weather easies up alongside all of your side effects. 

Hugs to all

πŸ’•πŸ™πŸ½πŸ›ŽπŸŒ²πŸ’•πŸ™πŸ½πŸ›Ž

Highlighted
Member

Re: December 2019 Chemo Starters

Thanks livers, and good luck tomorrow. Let us know how you get on. My oncologist mentioned the obvious side effects but the nurse doing the infusion seemed to think it might not be too bad, so I am just waiting somewhere in the middle!

The steroids ended at lunchtime so I'm hoping the effects go soon. They seem pretty ubiquitous on chemo for most if not all of us, but they aren't great mentally even if they help physically.

xx

 

Highlighted
Member

Re: December 2019 Chemo Starters

Hi MrsS1968

Thanks, and glad you're feeling more yourself again. It's something to look forward to during the cycle...

I bet it's been lovely seeing your sister, but it's always hard saying goodbye. Hopefully you've been able to spend some good times together in between the side effects biting.

I just hope the steroid effect doesn't hang about, especially if joint pain and bone pain both kick in, but at least I'll know what to expect for the next sessions. Forewarned is forearmed, as they say.

I got out briefly in the garden and tidied up a bit from the wind, filled bird feeders etc, but it was too cold to hang around. You did well to get out and I bet your dog loved it!

Take care too - not long until 20 Feb and the next stage.

xx

Highlighted
Member

Re: December 2019 Chemo Starters

Hi Madcatlady,

 

Glad to hear all went well.  I’m seeing my oncologist tomorrow so plan to ask her about se’s and double steroids!  Hope you have an easier week πŸ’ͺπŸ’•

 

Lynne x

Highlighted
Member

Re: December 2019 Chemo Starters

Hi Madcatlady

Glad to hear you are doing ok. We haven't had any snow down south but today is very windy again and very cold. Fingers crossed that you respond better to the docetaxel. I am feeling human again after my EC on the 30th. Next round I move onto paclitaxel weekly from the 20th and no filgrastim!!!

Glad to hear you have sorted out the timing of the steroids and are sleeping better- nasty little things that they are.

I took my dog out for a good long walk today which always makes me feel better, like I have actually achieved something. Sais goodbye to my lovely sister who has been over from Australia for a flying 11 day visit, so that is a bit sad. Just counting down the weeks so I can put this all behind me and move on.

Take care and keep up the good work xxx

Highlighted
Member

Re: December 2019 Chemo Starters

Hey rizzer, livers and Adelemck

Greetings from the day after first docetaxel!

So sorry to hear about your fences coming down, Adelemck - just what you need to worry about at the moment, especially when you need to keep pets safe πŸ˜•

My friend who drove us yesterday was a star coming back in worsening snow; it took us all hy surprise as it started as we left the hospital. By the time we got back home I told her to drop us at the top of the road as it's not the widest street, is downhill, and there are parked cars down one side and a narrow pavement and stone walls on the other! Not the easiest to navigate in slippery, slushy snow..

Is anyone else affected by the wind and snow? We've just had flurries today and the wind is high again, but nothing has settled.

I slept better last night but made sure I took the second lot of steroids by 12.15pm yesterday and the same today. Thankfully that's them finished until next time. The filgrastim are for seven days again from tomorrow 😟

The nurse was quite vague about side effects and said I might find it better than FEC, but I'm reserving judgement at the moment! 

How is everyone doing? 

xx

Highlighted
Member

Re: December 2019 Chemo Starters


@Madcatlady wrote:

Hey rizzer 

Not tired at all - I'm hoping that will change before the early hours. Otherwise I will be a bundle of laughs in the morning 😫

Light relief reading is going to be much more helpful. We ought to collate some tips.

I'll check in tomorrow when I'm back from the alternative universe of more steroids and the infusion...

Take care 

xx

 


Wishing you all the best for today Matcatlady - speak to you on the other side!

 

Lynne x

Highlighted
Member

Re: December 2019 Chemo Starters

Sending everyone love and positive thoughts for the week ahead will be thinking of you all especially those on round 4 πŸ’ͺπŸ€žπŸ’ž ...I lost all the fences at the back of my house in yesterday's storms so trying to sort that out as I have a dog! Just what I need right now as on ssp! I love to read but on easy chick lit at the moment love Lesley Pearce but read all hers - have also enjoyed Audible it's a bit expensive but I find it very relaxing 😊 Adele x

Highlighted
Member

Re: December 2019 Chemo Starters

Hey rizzer

Thanks: a bit wired still - wide awake till 4am then dozing on and mainly off until 8am with breaks at 6am and 7am. To add insult to injury, more steroids with breakfast!

Everything was churning around as it always does in the small hours. Getting up to a sunny and slightly less windy day today is helpful, as is the fact that the first docetaxel is this morning so not as long to wait 🀞

xx

 

Highlighted
Member

Re: December 2019 Chemo Starters

Hi MrsS1968

Blame chemo brain - it's Villanelle, isn't it!

(I asked my daughter if she thought he was nice looking, and she said yes, in an 'old man kind of way'...I looked up the actor and he is 53, like me!!)

I haven't seen Line of Duty - another one people say is good to watch is Broadchurch. 

I was really hoping they'd say no more filgrastim injections, but maybe it won't be a week's worth.

I was still awake at 4am...went to the bathroom...dozed until 6am then awake again at 7am...and must have nodded again as the alarm was set for 8am and woke me up. Grrr!

I'm going to take the second lot of today's steroids to the hospital to take at 12noon as that might make a difference. (Yesterday it was 1pm, the latest the nurse had advised.)

Hopefully it will be better tonight 🀞

xx

 

Highlighted
Member

Re: December 2019 Chemo Starters

And good luck today .... let us know how you're doing if you feel like it later X

Highlighted
Member

Re: December 2019 Chemo Starters

How are you doing madcatlady? How was last night? 😬

Highlighted
Member

Re: December 2019 Chemo Starters

I am SO relieved, also relieved that I won't need filgastrim injections with paclitaxel. Hope you managed some sleep 🀞

I loved both series of Killing Eve, I kind of get where you're coming from re her handler. Have you also watched all the Line of Duty series? They are fab x

Highlighted
Member

Re: December 2019 Chemo Starters

Thanks MrsS1968. You must be mighty relieved!!

Thanks for the tip re. the Stranger. My daughter wants me to watch the second series of 'Killing Eve' on Netflix with her. Not sure it's the best choice at the moment, but I did have a bit (well, quite a bit!) of a crush on Villaneuve's handler (think that's how you spell it?). She's also watched 'Derry Girls' and loved it.

xx

Highlighted
Member

Re: December 2019 Chemo Starters

Hey rizzer 

Not tired at all - I'm hoping that will change before the early hours. Otherwise I will be a bundle of laughs in the morning 😫

Light relief reading is going to be much more helpful. We ought to collate some tips.

I'll check in tomorrow when I'm back from the alternative universe of more steroids and the infusion...

Take care 

xx

 

Highlighted
Member

Re: December 2019 Chemo Starters

Madcatlady I nearly had a hairy canary. The pharmacist gave me 16mg of steroids to take thinking I was going on to docetaxel next, not paclitaxel. Fortunately I questioned it and I don't have to take them pre paclitaxel πŸ˜…, not even going down the drug error route...

I am a great reader but when I'm really low hit Netflix big time. If you have it definitely watch The Stranger which is new. Be warned though, once you start it it's difficult to take a break, 8 episodes!!

Hope you manage to sleep.

 

Lady 34 hope you are feeling better.

 

Debelina totally rocking your wig. I find mine really hot! Any tips? 

 

Xxx

Highlighted
Member

Re: December 2019 Chemo Starters

Thinking of you Lady34. Big hugs Xxx

Highlighted
Member

Re: December 2019 Chemo Starters

Hey madcatlady, I sooo know that feeling - and I’ve never taken 16mgs! Keep on rolling with it, lady! 
That book sounds like just the sort of masochistic stuff I would pick up deliberately, hoping to get some insight, but just end up anxious and deflated. 

I think I just want a good laugh really. So if anyone can recommend something that works on that front, please do.

Thinking if you madcatlady... hope you can get some sleep later Xx

Highlighted
Member

Re: December 2019 Chemo Starters

Hi Debelina

I couldn't believe it - weird or what?! There really should have been a health warning on the back. I'd never have picked it up if I'd known!

I read all the time normally, fiction and non-fiction, but am finding I haven't got the energy for anything heavy or classic literature at the moment. My sister loves all the dark Scandinavian detective fiction but I think they would be too much for me at the moment. Candyfluff sounds more like it!

I've also been reading old favourites from childhood and the familiarity and going back to a happier time is really helpful.

I've taken the double steroid dose now - four lots breakfast and again at lunch, so 16mg. I've cleaned the house, gone food shopping, washed the wigs I've been lent, am about to strip our bed and put clean sheets on, and have dinner in the oven. I really hope I'll have tired myself out by bedtime but feel a bit wired at the moment! 

xx

Highlighted
Member

Re: December 2019 Chemo Starters

OMG freakyyyyyyy Madcatlady……did you mean to pick it or maybe it picked you Smiley Surprised I usually read really gory, scary books but all I can cope with at the minute are books that my sister reads.....I call them her candyfluff books because they are such a gentle read...….x

Highlighted
Member

Re: December 2019 Chemo Starters

Thanks so much, Debelina xx.

Yes, my thoughts exactly. Double steroids scare me too, but then the thought of an allergic reaction, which they give to try and prevent it, is also scaring me. The phrase 'caught between a rock and the deep blue sea' springs to mind!

I bought several books from a charity shop earlier today. I started one this afternoon; on the back it said it was about two couples, formerly close friends, and something from the past coming back to haunt them. There was no clue, but you'll never guess what the female protagonist's job is....yes, a breast cancer doctor, and the friend has Stage 1V breast cancer. You couldn't credit it, could you?! 

xx

Highlighted
Member

Re: December 2019 Chemo Starters

Madcatlady…………...I am gutted we need double steroids on Docetaxel because of the low I get from them....I am more worried about this than the physical side effects. I hope all goes to plan for you on Monday...……….much love xxxxxxx

Highlighted
Member

Re: December 2019 Chemo Starters

Lady34...…...I am so sorry to read your post......you must be absolutely pulverised and even more exhausted being away from home...….infections are physically so scary but what I didn't understand before this week is how an infection can effect your body mentally. 

You are so right...….we are definitely are faced with reality when we are in hospital and out of our cocoons at home......please keep us posted on how you are coping.....I hope you get home soon xxxx

 

Thanks for the picture comments ladies...alas if it weren't for my wig and Boots make-up counter you would be looking at a picture of a hairless steroid puffed up Debbie Smiley LOL Smiley LOL Smiley LOL 

 

Much love to you all x

Highlighted
Member

Re: December 2019 Chemo Starters

Big hugs Lady 34- you are doing it tough xxx

Highlighted
Member

Re: December 2019 Chemo Starters

Hi lady34, I’m so sorry to read what you’re going through. It sounds just awful and you must be wondering, how much more have you got to take. We’re here - thinking of and praying for you. Hoping you’ll be home soon, love Xxx

Highlighted
Shi Community Champion
Community Champion

Re: December 2019 Chemo Starters

Right then let’s all have an agadoo dance to help get lady’s neutrophils up (this stems back to May17 thread that used to do a bloods dance for each other if anyone had casa nhs stay) πŸ˜πŸ‘it always worked and they were back home safe soon πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ», lady this ones for you, push pineapple shake the tree πŸ˜πŸ˜πŸ˜˜πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’•πŸ’•βœ¨βœ¨Shi xx

Highlighted
Member

Re: December 2019 Chemo Starters

That has really made me chuckle - I saw black lace at an 80's festive last year - they were amazing! got everyone up and dancing - bought tickets for this year and booked our hotel before I was diagnosed so that's my first big goal it's not till July so it feel doable - been out for lunch today it was tough as my back has been in spasms today but I just needed to get out!   Hope everyone has as good a weekend as possible Adele x

Highlighted
Member

Re: December 2019 Chemo Starters

Oh Shi, Black Lace takes me back to my teens! When I was thin, had two boobs, better eyebrows, no grey hairs, etc, etc, BUT also when I had no idea of what strength there is in us women! 

xx

Highlighted
Member

Re: December 2019 Chemo Starters

Oh Lady34, so sorry you're in hospital. I was in this time two weeks ago and it really lowers your spirits. Thank goodness you're now in the oncology ward where the staff are trained in caring for people undergoing chemotherapy.

The antibiotics should sort your infection and the anti-coagulants the arm pain, and the delay before having T will allow you to get stronger. The drugs they give us are pretty nasty and take some coping with, so when you're battling an infection as well, it's no wonder your body struggles and your emotions take a dive too.

Take care of yourself.

xx

 

Highlighted
Member

Re: December 2019 Chemo Starters

Oh, that's great news, Debelina! That big smile says it all.

And you're right: it's now February and we're well on our way now.

I saw the oncologist yesterday and she said they'll do a slightly lower dose (but it's still a full dose apparently) of the docetaxel (T) on Monday, as I've had a couple of hospital stays and they want to avoid it again. 

She told me to expect joint pain, sore mouth, the possible loss of nails, and tiredness. All she could offer was paracetomol...and the steroids for three days are double the dose for FEC. I'm going to be either on the ceiling or very down...not looking forward to it at all! 😬

Take care of yourself.

xx

 

Highlighted
Shi Community Champion
Community Champion

Re: December 2019 Chemo Starters

Lady34 ❀️Sorry to hear you are having a stint in casa nhs. Let the drugs do their job, keep strong your neutrophils will suddenly go whoosh and get that infection under control, it’s just the days feel like forever. Discuss with your onc about next treatments, I had reduced dose after casa nhs stint but thought well better reduced dose than nothing, I really didn’t want to do any more, but thought I have to give it another go and was fine on reduced doses for remaining chemos. Right then challenge for today is do the conga on the way to the bathroom while singing it like black lace (if you are old enough to remember them) you have to try and have fun still while you are there 😁 keep πŸ’ͺπŸ’ͺyou can do this πŸ’•πŸ’•βœ¨βœ¨Shi xx

Highlighted
Member

Re: December 2019 Chemo Starters

Hello Ladies

long time I’ve been off here. First due to lowness and just managing my tiredness. On Wednesday got 39 temperature got to A and E admitted and still here!

 

just read your posts fear being the big one. Being here adds to all my fears. The only space they had was in the acute stroke unit yesterday I’ve been put in the oncology unit. 

 

Ive not eaten since I’ve been here just apples oranges but lost my appetite a week before. The nausea has wiped away my desire to eat. 

 

Ive got an infection given antibiotics and anticoagulant the arm I had chemo in in December has swollen up and veins are sore. Had a scan on it for blood clots luckily No Clots. They’re talking about a pic. 

 

The infection isn’t gone so they’re keeping me in. You cannot help thinking of the worst when dealing with these side effect then being dragged down further and stuffed full of more meds. 

 

My first chemo of T was due on Friday so put off for a bit. To be honest I can’t face more treatment at the moment. I’m half way through got 3xt to go then the op then still every 3 weeks anti body infusions. So still a way to go. 

 

Sending hugs to all πŸ’•πŸŒ²πŸ›ŽπŸ™πŸ½πŸ’•

Highlighted
Member

Re: December 2019 Chemo Starters

Looking great Deblina πŸ’ͺπŸ’—

Highlighted
Member

Re: December 2019 Chemo Starters

Yes, Debelina. You may well not feel it but you certainly look amazing. So glad you’re well enough to go home X

Highlighted
Member

Re: December 2019 Chemo Starters

Beautiful photo! You're looking amazing Debelina! Xxx

Highlighted
Member

Re: December 2019 Chemo Starters

Ladies coming home from hospital and seeing so many people there with really bad SE to their chemo has made me realise that our wee group are such great wee supporters to each other.....I won't use the word warriors or fighters for us tonight as reading our posts I think we are all just too weary now (but only for a while)...…...but omg this the beginning of February and we are the Dec 2019 Chemo starters...….look how far we have come already......by the end of April hopefully must of us will be thru chemo and those of us who have a year of Herceptin & Perjecta ahead of us will have learned even more about how we are able to determine how our bodies can and cannot tolerate changes to or meds so we are going in more prepared than chemo...…we have to hang on xxxxxx

 

The Excitement Of Going Home xThe Excitement Of Going Home x

Highlighted
B4
Member

Re: December 2019 Chemo Starters

Hi,

I live in Bromley (S London/Kent).

 

xx

B4

Highlighted
Member

Re: December 2019 Chemo Starters

Hi yes it is the docetaxol that does the damage as far as I can remember

Highlighted
Member

Re: December 2019 Chemo Starters


@daisydi wrote:

Hi I'm from Feb 19 group.  Regarding nails I couldnt get on with the dark nail varnish either but changed to a product called Evonail which protects from UV but is clear.  My nails took a bashing but they did survive.  I used dark polish on my toenails and they are not nearly as good so I would thoroughly recommend this product.  I got it on Amazon.  It is quite expensive but well worth it.  Lots of luck x Please pop into our thread if you need any more information.  I think between us we have been through everything!


Thanks @daisydi, I will try anything at this stage as they look pretty awful and I’m only halfway!  Going into 3 rounds of Docetaxel next and I have been told that’s harder on your nails than the EC?

 

Lynne x

Highlighted
Member

Re: December 2019 Chemo Starters

Hi I'm from Feb 19 group.  Regarding nails I couldnt get on with the dark nail varnish either but changed to a product called Evonail which protects from UV but is clear.  My nails took a bashing but they did survive.  I used dark polish on my toenails and they are not nearly as good so I would thoroughly recommend this product.  I got it on Amazon.  It is quite expensive but well worth it.  Lots of luck x Please pop into our thread if you need any more information.  I think between us we have been through everything!

Highlighted
Shi Community Champion
Community Champion

Re: December 2019 Chemo Starters

Just gentle reminder to be careful about giving locations out on the threads it’s ope to the world ❀️Keep safe β€οΈπŸ’•πŸ’•βœ¨βœ¨Shi xx

Highlighted
Member

Re: December 2019 Chemo Starters

Hey, I’m near Tunbridge Wells, but just over the border into East Sussex.

 

I think it’s healthy to set realistic goals Adele πŸ˜‰ X

Highlighted
Member

Re: December 2019 Chemo Starters

Hi Lynne

I have just had my third and last EC and have also been feeling very low. I agree walking helps, as soon as you feel up to it. 

Regarding the black nail varnish, I have also been trying this but I find it chips off so quickly; possibly because I was my hands so often. I usually end up wiping it off after the end of the second week. I was told the theory behind it is that it stops ultra violet light which reacts with the chemo. 

A tip I was given also was to moisturise your nail and cuticle area well when applying hand cream. 

I wish you well with the rest of your treatment. And well done for managing 3 mile walks.

Love mc22 (Maddy)

Highlighted
Member

Re: December 2019 Chemo Starters

Morning ladies,

 

I also was very down earlier this week, definitely must be the se’s after round 3!  I have forced myself out on a 3 mile walk each day for the last 3 days and it has really helped to lift my mood.  I live in Sunningdale near Ascot and am walking distance from Windsor Great Park - so am very lucky to have some wonderful walks close by πŸ€

 

On another note, does anybody have any recommendations to strengthen nails?  My finger nails are just peeling off in layers and are very weak.  I’ve painted them with a dark colour from Day 1, but now there is so little nail left it hardly seems worth it!

 

Stay strong all πŸ’ͺπŸ’•

 

Lynne x

Highlighted
Member

Re: December 2019 Chemo Starters

Good luck Adele!

I am in North Hertfordshire.

Fiona x