Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Hi ladies

 

Those of you now on T, thanks for posting your experiences, it's all useful. I start T this week and not looking forward to it, especially if it is rather drawn out.

 

Tracybev, sorry to hear you've had a virus, but good to know that the hospital dealt with you so swiftly.

 

Liloc, good to hear you are finally home, yay!

 

Pigeon, hope you are not feeling too drained at this point after your T, I also had bone pain on FEC so reading your experiences with interest.

 

Tbird, hope you get on OK with crochet, something I would love to do as I always gravitate towards gorgeous crocheted jackets and cardis. Think I need to find some classes and get myself enrolled. 

 

Mouth issues, I haven't had any major problems but wanted to try preventative methods. Not sure why I didn't think of this before but one of the oncologists I saw said to use bicarb if I had mouth problems, I've bought some baking soda toothpaste from a pound shop and am finding it much kinder to my mouth.

 

Anyone on T care to share their nail care plan? I'm still undecided as I hate nail varnish on my fingernails and also they are chemicals, which we are supposed to avoid. I'm just using cuticle oil and cream at present. FEC has caused no damage or change to my nails so far (it's just wrecked my stomach! Smiley Sad )

 

Keep going girls, we can do this! Heart  

Member
Posts: 16
Registered: ‎01-10-2018

Re: November 18 chemo starters

Hi Pigeon, glad you managed to get #1 T done today, I was doing fine up until today had the "hit by a bus" on day 3 but by yesterday was feeling ok, woke up this morning will a really sore throat but normal temp but by lunchtime had spiked to 38 spoke to chemo hotline told to take myself off to a&e who were absolutely brilliant treated like a vip all investigations and treatment started within an hour the only wait was for bloods to come back which thankfully were all ok was told the platelet count was fantastic....those bloody injections are working 👍they even emailed the oncology team who popped down to make sure I was ok, so after iv abx was allowed home....no infection just a nasty virus 😲

Good luck to all who have or are about to start T

 Stay strong ladies, take care of yourselves we can do this 😘

Tracy x

 

Member
Posts: 28
Registered: ‎21-09-2018

Re: November 18 chemo starters

Hi everyone,

 

Finally got to have my first Docetaxel this afternoon after last week’s delay, my liver function went from 171 last week to 99 this week, (40 or below is normal) which although not perfect, I think is a pretty big improvement!  And of course good enough for the team to give the okay for treatment to go ahead, which is the main thing.

 

I did have to have a reduced dose at 80%, so hopefully the side effects will be a bit kinder. 🤞

 

Tracybev, how are you doing following your first T last Friday?

 

Sals and Tbird, by the sound of your experiences on T so far, I’m guessing I’ll start feeling rubbish and achy by Monday or so - day 4? Bit nervous about that “hit by a bus” feeling, but I know everyone is different so we shall see. That said, I did have bone aches even on FEC, so maybe like you said Tbird, it is more of a side effect of the filagrestim injections? Anyway, I’ve got he painkillers and bath salts at the ready. 💪

 

Tbird, speaking of chemo brain, I’ve just had an extra week of no chemo so you’d think my chemo brain would be improved, but it feels like mine is just getting worse and worse! I couldn’t remember what I had for lunch today 15 mins after I ate it! 🤪 

 

All the best, ladies, xx

Member
Posts: 31
Registered: ‎22-10-2018

Re: November 18 chemo starters

Sals, I'm a bit like you aches starting to creep in, I have had a extra day on steroids (yesterday) and if I'm aching like this now I can only imagine what tomorrow will bring - my one remaining energy level has frazzled out today ha ha.  On the plus side chemo foggy brain is not too bad and so far no feeling of sickness.  Like you my chest is a bit tight and I feel so bloated but as you say probably the streiods.  I was wondering if the joint pain is from those littLe piskey injections we all love so much.  But anyway if this doesn't get worse then it's very do able.  Just to add I am very red so on antihistamine foR a few days.  It's nice to swop side effects.

 

Lilocci  I was so happy to hear you escaped Casa NHS and slept in your own bed, now rest and let people look after you.

 

im sitting here now waiting for Ken Bruce's pop quiz - I so rock and roll ha ha.  My friend is coming to visit on Monday to teach me how to croquet? I have nine grandchildren staring from age 18 to age 7, two of them will be going to uni this year so I want to make blankets for them all, I don't do things by halfs.

 

take care ladies 

Love Tbird xx

Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

Tbird, how are you feeling? I have woken up this morning aching from head to toe feeling like I have the flu but I think that is the ‘ you might feel like you have been run over by a bus’ effect the nurses told me about!
Sals
Member
Posts: 35
Registered: ‎21-10-2018

Re: November 18 chemo starters

Hi there, finally at home, got my 24hrs below 37.5 (without the ice cream trickery 🍨, OH said he didn’t want a message that I was in the morgue with a temperature of -5C). Sooooo happy to be back, couldn’t sleep very well there with all the antibiotics drips through the night and blood tests even at 5am! Exhausted but so looking forward to being in my own bed. They never found a cause for the fever 🤷‍♀️.
Was booked in to do a Reiki session as part of the complementary therapy offering tomorrow. Intrigued to do it as I don’t know anything about it but can’t face going back up to the hospital right away so have postponed for now.
T sessions certainly sound long! Was downloading episodes of comedy series from Amazon Prime onto my phone in hospital, so I must remember to get a few in reserve (need to free up some phone space though).
Right, resolution now is to stay healthy for a week til my last EC on the 17th. Not great shakes in terms of new year’s resolutions but little steps...
Thanks for all your good wishes x
Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

Hi All,
Now first thing is i’m Typing without glasses as I left them at home so maybe several typos! I had my first T on Tuesday, and was similarly surprised and a little frustrated by the time it took - same thing I had my targeted herceptin over an hour and a half then a flush then more saline and anti allergy then finally the dovetail again over and hour and a half then another flush or something like that! Anyway it was continuous administration of drugs for 6 hours - arghhhh!
So I didn’t have to go over 2 days but next time I will take more entertainment! I have to say I feel much better than after FEC in fact because of the high reactivity of theses you have so many steroids i’m buzzing about, cleaning, cooking, dog walk yoga but they are finished today and I am sure I will come crashing down soon. I do feel very bloated and my chest is tight but I think this is more how the steroids affect me than the chemo!
Lilocci hope you recover ASAP but just relax and go with the flo
It’s all you can do 😘 Tbird hope you are feeling ok after your 2nd session, love and strength to all - we are getting there 2 to go for me although I have to have the herceptin every 3 weeks after I finish for15 more sessions!
Take good care and be kind to yourselves there is a good book called mindfulness that is worth a read 💕
Member
Posts: 31
Registered: ‎22-10-2018

Re: November 18 chemo starters

Hi Holeinone

 

the reason I had to have it in 2 days was because the first targeted drug I had Took an hour then I had to be observed for 4 hrs to make sure I didn't have side effects after that the 2nd targeted drug took an hour then I had to be observed for another hour for side effects.  I didn't know until then I had to go back today - apparently they don't like to give you the chemo until the next day so if you get side effects they will know which drug caused it - for number 5 +6 I will have both targeted drugs and chemo on same day as I didn't have any bad side effects.

 

i wasn't offered ice mitts or given any advice about uv lights, I think I might give breast care nurse and see what they advise (thanks for the tip).

 

hope everyone stays well

 

love Tbird xx

Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Well said Tbird, we are all behind you Liloc, enjoy that ice cream and fingers crossed for 24 hours at normal temperature Heart

 

Tbird, absolutely no shame in having a little emotional release, I think we all need to do it every now and then during this treatment, just to stop us boiling over!  Congratulations on getting through your first T, although I'm anxious to know why it took 2 days? Were you offered any of those ice mitts or were any suggestions made for dealing with side effects at all?  I hate painting my fingernails but am thinking about it, I understand the damage is done due to UV exposure after having T, and as I always forget gloves in Winter I might just paint my nails to stop the light getting at them.

 

Keep strong November ladies xx

Member
Posts: 31
Registered: ‎22-10-2018

Re: November 18 chemo starters

Lilco

 

so sorry you're still in Casa NHS, don't save your ice cream eat it and enjoy.  It's so frustrating but you are in the best place ( I bet you're so fed up of cliches).  

 

Try  and enjoy your private room and the peace and quite and try not to get too down we are all rooting for you and sending hugs and positive vibes.

 

Love Tbird xx

Member
Posts: 35
Registered: ‎21-10-2018

Re: November 18 chemo starters

Well done on getting through your first T, Tbird, we’re all hoping the SEs are much less dibilitating than FEC/EC. 🤞
Still in hospital as I had a temperature spike last night so didn’t get my 24hrs clear 😡. Having vanilla ice cream for tea, wondering if I should keep some in reserve for just before my temperature’s taken...😂
Member
Posts: 31
Registered: ‎22-10-2018

Re: November 18 chemo starters

Hi Ladies

 

i hope everyone is keeping well.  

 

I have just just finished my 4th treatment which was my first T.  My T consisted of Pertuzumab, trastuzmab which are targeted drugs and docetaxel which is a chemotherapy drug.  I had to have them over 2 days which was a bit tiring but no 5 and 6 will all be done on the same day fingers crossed.  Apparently if you don't get side effects whilst it been adminastrated then side effect shouldn't be much - just them little blasted injections which get you (oh the pain) but watch this space and I'll let you know.

 

to be fair though I did have a major melt down yesterday morning and sobbed like a lass but it was just the fear of the Unknown all over again but apart from the length of time it took it has been fine (let's hope I haven't spoke too soon).

 

love Tbird xx

Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Liloc, oh my goodness!

 

Are you out of hospital yet? At least they are sorting you out and I hope you feel much better soon.  

Member
Posts: 35
Registered: ‎21-10-2018

Re: November 18 chemo starters

Hi all, caught up with your posts after being out of action for a few days, sorry to hear of postponements and delays to next rounds. I’ve been struggling to get through round 3 of EC which I had on the 27th. Last two I was over the nausea and exhaustion by Day 10, this time I just couldn’t get out of my hole. Then on Sunday I started sniffling and shivering by the afternoon and went into A&E in the evening. Wow, the 11pm to 6am shift was like a war zone in there, goodness knows on a Saturday night! Really admire the staff for what they have to deal with. Anyway, they kept me in as neutropenic (white blood cells had given up the fight and packed their bags for the Caribbean) and been here since. Temperature ok today but they don’t want to let me out until it’s been stable for 24hrs which I’m not going to argue with as the last thing I want to to go home and do the whole A&E experience from scratch. Have also got an upset stomach now but think that might be a reaction to the antibiotics. Hoping it’s not another spanner in the works. Got my own en suite room with a lovely view so not all bad being in isolation 😁😷🧤. OH spent two hours here yesterday with his mask on back to front. Hoping to go home tomorrow🤞.
Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Hmdhelen, thank you, looks just the joband good reviews too! 

 

I'm hating my wig at present, the ends feel frizzy and dry, they don't look it thankfully. Thinking of changing my forum name to Mrs Frizzywig Smiley LOL (apologies to Charles Dickens!) 

 

Apologies, I'm about to have another moan. I've just been to see the oncologist, it was a different one, this is the third different oncologist I've seen in four meetings, I'm a bit fed up!  This one informed me that T is highly toxic and I must take the massive amount of steriods I've been given as I questioned the dose. I did stupidly tell him that I had a constantly grumbly stomach due to the steroids and he said "why do you think it's the steroids?" because the last oncologist suggested it might be!!! He told me to add Gaviscon to the meds I've already been given. I didn't want to ask any more questions so we just left,.

 

Can't wait for next week now and the "highly toxic" T Smiley Sad 

Member
Posts: 8
Registered: ‎27-09-2018

Re: November 18 chemo starters

Re: hats, I've got this one: https://www.amazon.co.uk/LILYSILK-Womens-Sleeing-Bonnet-Mulberry/dp/B012ER5I6M/ref=sr_1_7?ie=UTF8&qi.... It's great - really comfortable, warm etc.

Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

Ah my oncologist said the red one is a nasty one and can cause a problem with the veins when I said I had some arm pain. Glad to hear it’s so far so good for you. I’ve had my steroids today so will probably be up all night 😬
Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Tbird, looks like you are paving the way with your T this Tuesday, good luck with that and I hope everything goes well (and you have nothing but good things to share!!). 

 

Kateday, I'm with you, I've also had trouble on FEC, not much respite from SE's and feeling constantly ill, oh and the bleeping constipation!!!! Since the last round I've been dragging myself around the house and keep feeling faint, I'm guessing my bloods will not be great this time Smiley Sad 

 

I also have the sore arm, I did have very prominent veins in the elbow joint on both arms but the one on my chemo arm has disappeared to be replaced with a bruisy coloured patch, hope it returns Smiley Sad Can't fully straighten my arm now either and it's the one I use the most. Had a fair amount of discomfort in my arm following the second round of FEC, but round three was much less painful. I'm now finished with FEC, so if it is the E causing the vein problems (thanks for the info there tracybev!), I'm hoping for arm and vein recovery from now on (now drinking extra water all the time to assist with vein recovery Smiley Wink ).

 

I've had a rough weekend following my last FEC on 27th, very spacey and lethargic. Still having the occasional stomach gurgles and plenty of wind, but appetite back to near normal so I'm thankful for that. 

 

My wig has had a wash, I was quite anxious until it had dried that I may have killed it and would have to go around with a frazzled lump of nylon on my head, but it turned out fine. The ends feel horrible though, might have to give it a condition on the ends only. 

 

I may need to treat myself to a new sleep hat, has anyone purchased a nice silk one, and if so are they any good?

 

Oh, and does anyone know when hair regrowth starts, I've heard it can start on T so I'm hopeful of some stubble by the end of January, fingers crossed. 

Member
Posts: 16
Registered: ‎01-10-2018

Re: November 18 chemo starters

Hi Sals I'm still doing ok since starting T on Friday, no nausea actually forgot to take any anti sickness tabs as haven't needed them !! Although I think SE tend to kick in on the 3rd day mainly joint and bone pain....😱😱...will see how I am tomorrow !!

it's the injections that I have the problem with have a really full uncomfortable feeling above my ribs have been given lansoprazole and gaviscon which doesn't seem to help much.

I also have pain along my arm, the nurse looked at it on Friday and said that it's cording of the vein and it's from the E chemo ( the red one !)

Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

Thanks Tbird and kitkat, i’ve not got any redness just a weird aching sensation and a bruised feeling but no visible bruising, the thought of a needle being inserted in this arm is making me feel nauseous! Problem is my other arm is the one where I had the mastectomy and lymph nodes removed so it’s not recommended to be used🤷‍♀️ Will have to wait and see what the nurses say.
Good luck Tbird for Tuesday I guess you have the steroids at the ready for tomorrow 😬 tracybev how are you doing since T on Friday?