12-01-2019 03:24 PM
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! )
Keep going girls, we can do this!
11-01-2019 09:10 PM
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 😘
11-01-2019 07:08 PM
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
11-01-2019 10:21 AM
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
11-01-2019 07:52 AM
10-01-2019 05:51 PM
10-01-2019 08:51 AM
09-01-2019 08:20 PM
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
09-01-2019 06:56 PM
Well said Tbird, we are all behind you Liloc, enjoy that ice cream and fingers crossed for 24 hours at normal temperature
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
09-01-2019 06:04 PM
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
09-01-2019 05:45 PM
09-01-2019 04:39 PM
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
08-01-2019 07:44 PM
08-01-2019 04:06 PM
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 (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
08-01-2019 03:43 PM
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.
07-01-2019 09:20 PM
07-01-2019 03:30 PM
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
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 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 ).
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.
06-01-2019 11:32 PM
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 !)
06-01-2019 10:43 PM