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August 2016 Starters

julieg2106
Member

Re: August 2016 Starters

Hi Blueash 

 

Well done hunny... I'm not long behind you I have my induction on 1st December for radiotherapy and start 22nd December for 4 weeks.. I agree anything is better than what we are all going through with chemotherapy.. after this I feel I can do anything!! Xxxx

blueash
Community Champion

Re: August 2016 Starters

I started my radiotherapy last week. Nothing to it girls! After chemo anything is easy xxx

 

Vintage
Member

Re: August 2016 Starters

Hi lbseager,

Please see weekly taxol on the chemotherapy thread. See below for link. Hope this helps x

https://forum.breastcancercare.org.uk/t5/Chemotherapy/Taxol-weekly/m-p/969285#U969285
Lbsaeger
Member

Re: August 2016 Starters

Hi, I had my 4 AC and next week I start taxol weekly for 12 weeks. My hair started to grow back in between. Can anyone tell me about their taxol treatments?
Lisa
julieg2106
Member

Re: August 2016 Starters

Hi Vintage

 

Yes got through it! Thank goodness... bloody hard though. I'm going to ask too anything go make it easier.

 

Awwwww bless you I do hope it all goes well and that your side effects are easier for you.. keep in touch as and when you can to let us know how you are doing. Love and hugs to you ❤

 

 

Vintage
Member

Re: August 2016 Starters

Hi Julieg
Glad to hear you have got through your 2nd T. I am dreading it. But hopefull it won't be so bad😣
My second is next Monday. Quite close to when you will have your 3rd. I will be back this Thursday for bloods , so I will ask them about the steroids then.
We are geting there ladies!!
Love V xxx
julieg2106
Member

Re: August 2016 Starters

Hi lovely ladies

 

Glad you all ready for the T Aine and recovering well this time around... I have my last one on the 25th Nov and I am deffinately going to ask my oncologist about the Dex, anything to make things easier.

 

You did make me chuckle about decking the next person, I fully and we fully understand that yes you get sick of hearing it and the positivness begins to disappear sometimes... keep your chin up and I hope your T side effects are to a minimum.... ❤ hope everyone is getting on OK and feeling well xx

 

Love to us all xxx ❤❤❤

Aine
Member

Re: August 2016 Starters

This is all extremely practical and useful advice about how to prepare for the T cycles.

I am trying to prepare myself mentally having had a really tough time during the 3 FEC cycles.

I am on my 'recovery' week now and can't believe how much better I am - omg no nausea at all!!!!

 

Many many thanks for all your sensible and clear advice....I am taking it all on board.  

Got Clarityn.  Got the Dex to take before the big day.  Will ask for strong painkillers and get a week's shopping in the fridge and freezer!

 

If anybody else says to me sure you're nearly finished I am going to deck them!!

 

Good luck to you courageous ladies who are nearly 'there'!

Aine

x

Wendloui
Member

Re: August 2016 Starters

Hi ladies

I had the dexamethasone, 8 a day for 3 days, then 4 a day for 1 day, 2 for 1 day then 1 for 2 days, worked a treat but did suffer from really bad night sweats with them xx
Nikki49
Member

Re: August 2016 Starters

 If I remember correctly it was dexamethazone.

 

The usual dose for T was 4 tablets twice a day, starting the day before, day of & day after chemo.

(I took them at 8am & noon, I never had trouble sleeping)

 

With the steroid tale it was the same as the above then for the following three days two tablets once-a-day, then for the next three days one tablet once-a-day.

 

Best of luck xx

 

 

 

 

blueash
Community Champion

Re: August 2016 Starters

You can do the steroid tail yourself because you don't get any more you just take fewer pills on more days. It just means that instead of "leaping off a cliff" when your steroids stop you descend a flight of steep stairs.

You can Google "steroid taper" but basically if I was doing it and I had 16 mg of dexamethazone for 3 days I would take all 16 the day before chemo. Then all 16 the day of chemo but instead of taking all 16 the day after I would take 8 the day after, then 4 the next day and the last 4 the day after that.

 

That means I would take my dose over 5 days not 3 and have 3 days recovery so to speak. I only know all this because if you take steroids for a long time you have to taper them or it is dangerous to stop suddenly. A few days is not a long time but some people have to take them for many months.

Vintage
Member

Re: August 2016 Starters

Hi Nikki and Wendioui

Thank you for the info about the steroids. I will speak to my oncologist about this. Can you tell me what they changed with the steroids? Was it the same type , and how long and how many a day did you take?

Thanks again
Vxx
Wendloui
Member

Re: August 2016 Starters

Hi ladies, not posted on this thread but i'm also a august starter, had 3 ec and 2 t & h so far, just wanted to add anout the t, after the 1st one i was ready to give chemo up, after having such a easy ride on ec this one floored me, joint pain, muscle pain, foot and finger pain, itchy rash all over my neck, i couldn't take anymore. Saw my oncologist who is fantastic and was prescribed extra steroids co-codomal and pyridene for the finger pain, had mt 2nd T 10 days ago and apart from the horrible burny mouth feeling i've felt a lot more normal so please don't suffer, ask for the extra steroids and strong painkillers, i'm now more than ready to get my final dose on the 23rd out of the way knowing that i don't have to suffer xx
julieg2106
Member

Re: August 2016 Starters

Hi Nikki

Thank you for telling us about this medication that could help, like you, I and many others are totally hit hard with the T... it was absolutely horrific to say the least. I will deffinately be asking my oncologist about this to help me as a week or week and a half of pain and misery is horrendous and hurts not only in body but mentally too..

Thank you for popping in much appreciated xx
Nikki49
Member

Re: August 2016 Starters

I am from the class of September 2013, I don't visit often nowadays but couldn't read and go.

 

 I went through six rounds of its FEC-T

 

 First dose of T absolutely floored me, terrible pain felt like I'd been beaten up with a baseball bat.   Prior to my second dose I complained to my oncologist about it, hoping to be able to score some super strong painkillers.

 He prescribed what he called the steroid tail, great I thought more steroids!   But blow me it was like a miracle cure, on the days that I should have been flat on my back according to the previous cycle this time I was putting up my Christmas tree!

 

For those of you suffering the bone ache of T I'd definitely mention the 'steroid tale' to your team.

 

take care x

julieg2106
Member

Re: August 2016 Starters

Morning lovely ladies

 

Well done done to us all getting through this roller coaster of a ride to say the least..

 

I had my 2nd T (5th chemo) 3rd November, due to the horrific side effects I had to endure the first time round I decided to try claritin as mentioned here... I started the claritin 4 days prior the chemo and I will be taking them until 10 days after the chemo, last one being tomorrow. The side effects I have to say were just as bad, however, they didn't last as long so to me that is a bonus but I did feel out of sorts for the same period of time which I can cope with however it has still been a rough week. This time round though I have to say has been an emotional roller coaster for me... I suffered constipation again even though I followed a healthy diet, drank lots of water, laxatives on a daily basis and many many prunes 😐I eventually could take no more and had to contact the out of hours for help as I was very distressed.. and scared after the first time this happened. 

 

I eventually was able to go to emergency walk in centre at 1am to get some surpositries which helped eventually, again this was an awful experience but we are all different and respond differently to the treatment and the many meds we are on.. this has happened twice to me now so I guess 2 out of 5 ain't bad 😟

 

I will be taking claritin again as it really helped with the pain... 

 

This time round I have had to endure severe fatigue, this is very alien to me as I am very independent and active and my brain was saying yes but my body no! And we have to listen to our bodies so I have stayed in a lot more this time and slept a lot more... 

 

I guess we are all coming up to our last session soon, mine is on the 25th November yayyyyyy. ... we have come so far lovelies and nearing the end! Well done to us all and love and hugs to us all too! ❤❤❤

 

Well done Benno getting back to work, I think normality is such an inportant part of our journey.. I am hoping to go back in January.

 

Julie ❤❤❤

 

 

 

 

 

Aine
Member

Re: August 2016 Starters

thanks - especially that you had no nausea on T. I hope I am as lucky x
Vintage
Member

Re: August 2016 Starters

Oh and yes I had to take the steroids from the day before my first T and H. And on day had to stay for 6 hours incase of an alerjic reaction. I was fine and also had lunch on them.
I found the se took 3 days before they started.
I never had any nausea on T like I did on fec, so that was good at least.
X
Vintage
Member

Re: August 2016 Starters

Hello Aine,
Thanks for your jokes. Nice to have a laugh on here as well as a good moan 😅
I asked about taking Claritin also. They just said to me it would not do me any harm to try it. I will take it again for my next round but for me I don't think it helped, but who knows worth a try. Yes you can buy it over the counter.
Great you are half way 🙌 and hope you are lucky se wise with the T .
Vxx
Aine
Member

Re: August 2016 Starters

Hi from the September thread!

Just got over the usual horrendous 12 days of cycle 3 FEC and am rejoining the human race.

If anyone needs a laugh I put a few jokes on my thread  🙂

 

Can you buy Claritin over the counter or do I need to get a prescription?

 

Also I have to take Dexamethasone for 24 hours prior to my first T and H on the 21st.

Has anyone else done this?

 

I asked my doc about Claritin when I was getting my last FEC and he didn't have a clue what I was talking about.

 

My god you ladies have been through hell lately....I am really scared.. I think i will have an overnight bag packed in case I have to go to hospital on short notice.

 

I am trying to be positive. Carpe diem is my motto and i'm trying to enjoy being at home and not having the stress of work to worry about for a while longer.  My daughter has a cushion in her room that says 'positive vibes only' and I love that.  We survived FEC and we will survive the rest....X

Vintage
Member

Re: August 2016 Starters

Hi Benno449
Well done you going back to work. But make sure it's to suit you and don't over do it. Glad to hear it gave you a boost. I have been off my work since May but looking at early next year before I return.
Hoping the T is ok for you. 💜
Vx
Benno449
Member

Re: August 2016 Starters

Hi vintage
Hope your doing ok , my next bout is the t treatment pretty nervous to say the least but il deal with head on like all us exceptional ladies ....

Went back to work today after nearly 4 mths off ,omg how I needed this I really enjoyed it but gosh I was tired when I got home , only did 4 hours ....😀💕💕💕
Vintage
Member

Re: August 2016 Starters

Hi ladies
Hope you are all doing better than we were on last round.
I seen my oncologist today and I am having an extra week to recover , so a week on monday 😆 and then having the T reduced by 20% for next round. Hopefully the side effects will be much kinder.
Vxxx
blueash
Community Champion

Re: August 2016 Starters

Tracey they stopped me early because of low blood counts and numb fingers and toes.

traceyfizz
Member

Re: August 2016 Starters

cheers terri had mine reduced yesterday by 20% and got morphine so hopefully may help its my temp I struggle to keep down xx
traceyfizz
Member

Re: August 2016 Starters

Hi, Vintage its horrid isn't it youre suffering , i had a streaming cold after all the hosp stuff so i dont think that helped had 2nd t and herceptin yesterday feel ok so far , the pharmacist sent me home with morphine for when the pain kicks in as he said it definitely will lessened my t by 20%  ... cheers lol , he was more concerned about my numb  finger ends which worried me a bit cos he said if i ignore it it could be permenant so im on edge about that now only 1 more t to go so am a little happer heres to us all having better side effects xx

julieg2106
Member

Re: August 2016 Starters

Hi Vintage

 

So pleased you are now home....👍 Awwwww bless you, you make sure you take it easy hunny. ❤

 

Thank you for your reply... well 5th chemo done, been a long day but one to go yayyyyyy... I do hope SE are not as bad too but I'm ready this time for it!!! 

 

Sopke to my oncologist and she said she wasn't to worried as it's not near any organs but if still there in 5 days to call and go in for assessment and scan, so I'm happy about that as I am worried but she alleviated them a little. 

 

My thoughts and love are with you! ❤❤

Vintage
Member

Re: August 2016 Starters

Hi Julieg,

Hope you are better this time round. 💜 Did they change any of your meds to help?

When I had my masectomy I had alot of lower rib pain on that side. I was very distressed about it and found a lump between lower rib . I was sent for a bone scan. Told it was to put my mind at rest. And it was clear. The lump and pain still had me worried. So I had another ultrasound. I was told it was just a fatty lump nothing to worry about.
The rib pain has now settled.
I would get it checked just for your own peice of mind. we have so many worries that randomly pop into our minds. Best to put them to rest.

I got home tonight 🤗🤗
My nose is dry and bleading a bit inside. Sweaty head that comes in waves . Very strange.

Hugs and love
V xx
julieg2106
Member

Re: August 2016 Starters

HI lovely ladies...

Awwwww bless you Vintage and See See... Hugs and love to you you both ❤

 

Let us know how you get on.. I may be out of it for a few days as I have my 2nd T tomorrow not looking forward to it after last time but at least this time I know what to expect, I have also been taking claritin..

 

I was hoping you ladies could answer a concern I have... over the last couple of days I have noticed a few lumps on my lower ribs (breast cancer side) they are painful to the touch, in certain positions and when I lift my arm up it really hurts as though there is limited movement... has anyone else suffered with this? I must admit it does worry you...

 

Love and hugs to us all ❤❤❤

 

Vintage
Member

Re: August 2016 Starters

Not getting home today .🤒
Apparently white blood cell count up too high now!
This also means could be an infection or virus.
Vintage
Member

Re: August 2016 Starters

Thank you Julie and Blueash x
I will update you what I decide. Bit feel I have no idea at the moment what would be best. A bit eachy peachy. I wish the oncologist had more information on it.

Hi Seesee
Glad you are home but surprised they let you go home when your white cell count is worse. Take extra care honey. As to the se, I agree . I don't know if the pains were worse because of an underlying infection or not ? doctor did say these infections can come on very quickly.

I am hopefull to be going home today 😀 have to have more bloods checked before they will give me an answer🤑

Hugs to us
V xxx
See See
Member

Re: August 2016 Starters

Hi Vintage, 

i got out of hospital yesterday with oral antibiotics. They think mine was a chest infection. They've said the oncologist needs to check my chest again next week and my breast care nurse says I may get a reduced dose of the last 2 'T' or longer between doses. My white cell count is lower than when I went into hospital. It's hard to tell what are SE and what's out of the ordinary when you're changing drugs. 

Hope you get out soon

xxx

blueash
Community Champion

Re: August 2016 Starters

Hi Vintage,

 

Just wanted to wish you well and cheer you up if that is possible! Don't know what to say about your proposed choice of treatment but be sure to let us all know what you decide xxx

julieg2106
Member

Re: August 2016 Starters

Hi Vintage

 

Bless you, it sounds awful and not good for you! I hope you are able to go home as soon as you are well.. love and (((hugs))) to you ❤

Vintage
Member

Re: August 2016 Starters


Hi ladies and welcome Sweetbrire1,

Hope we are all holding out ok.
I am still in hospital on the iv antibiotics for neutrapenic sepsis .
it's day 8 from my T and just starting to feel I am getting better. Still on pain relief for stomach cramps and slight fever.
Hoping to get home Wednesday.
I was moved this evening from the single room on the receiving ward that I have been in since Sunday morning, (which I cannot fault) to another single room different ward/part of the hospital.  Fine I thought. Better visiting times.  The room has not cleaned from the previous person. Floor all dirty. Bits of loo roll on toilet floor and poo on the wall all round the paper dispenser.  Stains on bedding. Bins not emptied.  I fear touching anything in this room.  TOLD the nurse about it..... it was not her fault. It's the cleaning company. She cleaned the poo and I got fresh bedding. Someone may clean the floor tonight or tomorrow. ?  You just wonder how the same hospital can be so different between wards ?

Anyway, the oncologist came in to see me this morning.  It looks like I have a choice for next rounds.  Ether reduced dose of next 2 docetaxel. Or change to weekly dose of  Paclitaxol x6 .
No idea what would be best 🙆
Sweetbriar1
Member

Re: August 2016 Starters

Hi ladies
This is my first post having been just lurked around many threads since my diagnoses in June (49 years, dcis, grade 3, lumpectomy in July, FEC-T, cancer in 1 of 3 nodes, further node removal and rads to follow). Had my first T last Wed having got off quite lightly with se on the FEC. I too worried about starting T. My experience is ivwas fairly good in day 1. On day 2 I decided to have a day shopping as it was wa daughters 18th and didn't want to let her down followed by an evening meal. Day 3 & 4 pretty much in bed all day with no energy and pains in my feet, knees and back (felt like I had been touching an electric fence). Didn't sleep too well either. Night sweats and numerous toilet visits to follow. On day 4 I called the hosp who recommended taking ibuprofen and paracetamol alternatively every 2 hours which I did. Having read on this forum about Claritin, I also took a single dose of that. As a result my symptoms improved during the day and I had a much better nights sleep Today is day 5. Felt very tired first thing so took 2 paracetamol and a Claritin. Forced myself out for a dog walk. Walked really slowly (about 2 miles) but felt so much better for getting out. With a slight spring in my step (very slight!) I then decided to do a bit of gardening and then go shopping. Feel so much better than the previous 2 days. Maybe it was the Claritin that helped. Who knows, but I'm certainly going to continue taking it. Good luck to everyone else. X
julieg2106
Member

Re: August 2016 Starters

Hi ladies

 

It sounds we are all really going through it with the T, thanks for the tips regarding claritin, I will be deffinately trying that.. anything to help with the pain. Dreading my 5th session this Thursday but after that I have one more to go like many of us August starters we are getting though it... we are doing so well and yes it's doing its job. 

 

Hugs and love to you all..❤

See See
Member

Re: August 2016 Starters

Don't wory so much about 'T'. It turns out some of my worse symptoms are an infection. Back in hospital on IV antibiotics
Vintage
Member

Re: August 2016 Starters

Hi Aine + benno,
I also read other months posts to catch any tips I can , please dont panic too much, we are half way and that seemed like it would be a marathon but afew weeks ago 😆 I had 3 fec and my first t and h was on Monday there. All I can say to you is what my oncologist said at the start, everyone reacts differently. Same as the fec part. Some better than others.
And if you were to to feel bad , you have to keep your team fully informed to let them get you through as best as possible, without waiting around.
I did have my fec reduced by second dose. And kept miles better on 2 and 3. I don't know yet what they will suggest for the last 2 T but I am sure they will tweek something to make it more manageable for next time.

Luv and strength and huggs to us all
Vx
blueash
Community Champion

Re: August 2016 Starters

Aine,

 

The claritin is for everyone having the tax (docetaxel) because it gives you such bad pains but claritin helps with the pain. See here for details:

http://myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html

 

It cnnot hurt you and might be a real Godsend. Take it a day or two before your chemo and for at least a week-10 days after. It does not works as well if you let the pains get established. If you don't let them start you might not have any, I just felt very tired and achy but I was not in agony with it.

Aine
Member

Re: August 2016 Starters

SeeSee I am really sorry that you feel so awful.  

I have just been reading the August threads for the first time and I am quite shocked and dismayed by it all.  I am getting cycle 3 FEC tomorrow and was delighted to be able to say I am now half way through this.

 

Now I am realising that it is just going to get even worse.  I have had bad nausea problems and have been extremely tired.

 

Are you all having such a rough time on the T cycles?  Has anyone advice on how to prepare for the first one please?  I see the advice on taking Claritin - is that for people who have hayfever problems normally?  I don't.

 

X

Aine 

See See
Member

Re: August 2016 Starters

I had my first T on Wednesday. I ache all over; my arm from the problem that required the PICC line is sore; my neck and ears ache; I have no appetite and my mouth feels awful. Doing anything other than sitting or sleeping is too much for me. Don't remember feeling this bad for a very long time 😞

Vintage
Member

Re: August 2016 Starters

Hi everyone
Thanks for the posts of support for us right now. IT does help to know we will get through this. 💗
Well I kept drifting in and out of sleep yesterday and then in early hours started to have severe stomach cramps and thought I was going to pass out on the loo. I called the 24hr help line and have now been admitted with an infection. Don't know where the infection is.
So glad I called them now. Because at the time I just wanted to curl up in my bed and did not want to face the journey to a&e .

I was taking the Claritin. But unfortunately I don't think my luck was in this round.

I will be looking out to see how we all get on in next few days. Hopefully that's the worst over.😂
Hugs to us all😙xxxx
blueash
Community Champion

Re: August 2016 Starters

You have to get claritin hayfever tablets! Take them a couple of days before and for 10 days after. You will not get the pains I promise.

Benno449
Member

Re: August 2016 Starters

Hi all you brilliant ladies 💕💕I've got one more fec to do and then it's the T treatment ..I'm pretty scared to be honest but then I think my first fec was horrendous but I got through it so I need to hold my head high grim and bare and deal with it ...half way there ladies we can stand up to this little hindrance 💕💕💕💕xx
Terriannes90
Member

Re: August 2016 Starters

Dear All

I've popped over from the June thread, I always have a read of the other threads & after seeing all your posts I am crying for you all 😭.

I have been exactly where you all are with T & what a horrible place to be......but you can do it. I, like you, have never been so ill in my life and it's bloody frightening. I had my dose reduced for the 2nd & 3rd T and it wasn't as bad as the 1st. So I'm sure once onc knows how bad you are the dose will probably be reduced as this seems to be the norm.

Remember why you are doing this and be strong......you are all wonderful.

Lots + lots of love

Terri ❤️ xx
Vintage
Member

Re: August 2016 Starters

Hi Julie, Tracey and Seesee,
We are all in the same boat , and ohh it's so bad. The pain excruciating everywhere , sweating , swollen neck front even at back. puffed up face. Sore ears , throat. It is quite scary for me and my family to see. I just don't recognise myself.
It started on wednesday . I had gp out on Friday and got some solpadol and oramorph . It hardly touches the pain. Not sure what else there is that could help. Not been out of bed yet. Don't think I can take much more of the pain.
Do you think it will be the same for next rounds?
Feeling sorry for myself today. it is so hard.
Love and strength to you lovely ladies
Vxxx



See See
Member

Re: August 2016 Starters

Yep T is awful. I had my first one on Wednesday

traceyfizz
Member

Re: August 2016 Starters

hi , Julie I am so sorry for your side effects but at the same time relieved because I was exactly the same after my t and Herceptin ended up in hospital , keep strong its hard I know xx
traceyfizz
Member

Re: August 2016 Starters

hi vintage , no was fine until 2 days after t and herceptn then had the most awful pain in my bones then my temp went up so ended up in hospital again for a few days , pain not bad now but got my next round on thursday and am dreading it i think the t and h has given me different se like sore finger ends and feet very odd . Hope you are as ok as possible only 2 more t to go yippeeeeee cant wait x