Starting chemo in April 2012

Public Archive
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Hi Lisa - welcome to the warren!

If you go up a couple of pages you’ll find a few of us started TAX within the last couple of weeks and have been commenting on the SEs. The Starting Chemo in March thread is also useful.

This thread will also give you some tips - it’s not just about TAX but does have useful info. breastcancercare.org.uk/comment/2035261#comment-2035261

The thing to remember is that we all react differently and some people find TAX easier to tolerate than FEC or their other previous chemo drugs. I have found the extreme fatigue which kicks in after coming off the steroids, and the shooting pains difficult to deal with. Don’t think everyone gets the pains though. The main lingering effect for me is the sore mouth and lack of taste and I’m still very tired a week later although not as bad as 3 days after chemo, which was the worst for me. Also you’ll probably get the trots a week in, so if your previous chemo caused constipation you probably won’t have to worry about that any more!

Good luck - let us know how it all goes.

Sara x

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Hi Sara et al
Thanks for the welcome.
I think its the thought of a new regime that is doing my head in having just got used to the old one. Found it quite hard for a week after FEC treatment but it seems to have got easier as its gone along (apart from the sickness). Good to know that I can expect pain and then I wont be frightened by it.
Lisa

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Back from oncology appt. liver function still not good enough for chemo but is recovering and they are going to try me on 4 cycles TC starting in 2 weeks. Onc wants liver fully recovered before they start so keep fingers crossed please. At least it’s not the end of the world if my body can’t tolerate it, but worth a try for the extra prognosis. I am also reading all the tax SE talk with interest. Will be a bit behind you all, but glad I stayed on here with everyone. Still typing on iPhone so hard to reply to individual posts, but I read them all thoroughly and am very grateful for all of you. I cry and laugh in equal measure too :slight_smile:
Good news is surgeon got good clear margins so no need for radio, found out Imisunderstood and they actually removed 12 nodes, explains why I’m still so sore I guess. Have been doing without any painkillers since the end of last week to give my liver a rest, and drinking tonic water for the quinine on orders from mother. Don’t know if it’s helping but it makes a change from bottled water anyway :slight_smile: the older ladies in my family used to guzzle g&t or dubonnet & bitter lemon & never had liver problems apparently! oh, strangely the arm exercises for mx are also helping my sore vein. good luck to all those being juiced today and to pixie hope your surgery goes well.
Xxx

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Hi all and welcome Lisa sorry you had to join us , but yoou are in the right place for support and hugs. Sara sorry your feeling so low, me too, I was so lucky with the fec and was hoping tax wold be the same, but it has hit really hard, lost a bit of weight too, just dont feel like eating. I have been back to bed twice today, neverdone that before, but needs must, Margatee those steriods are terrible, I am awake on and off all night, and when I do sleep I have terrible dreams. the only thing that keeps me going is that there is only two more to go. Going to try and eat something now god knows what. Love to all Elainexxxx

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Hi Everyone been to hospital for another blood test today not heard from hospital so praying my bloods are up to 1.5 so i can have chemo tomorrow well i dont want it but know ive got to
Elaine so sorry you feel so bad on tax hope it gets better for you soon its not nice feeling so bad Fec was bad for me so hoping for a let up on tax but not holding my breath
Sara sorry your suffering with tax i also suffered with constipation with Fec so not looking forward to tax trot what we have to put up with i often wonder if i will ever wonder if will feel normal again
Margietee i spoke to onc about low blood and she said you are only under a little so sure it will be alright on day but in between end up having 3 blood test they cant get blood and keeping pocking around and hurting my arm as for steroids i hate them they make me feel sick and dizzy i feel like i have chemo and dont have it till tomorrow im sure they should be a band from taking
Pixie good luck tomorrow ill be thinking about you whilst being jucied sending you a big hug my friend cried when i gave her happy bag she loved it
Welcome Lisa this is a great forum to be on and we will all get you through chemo you get good advice and the girls bring you up when you feel down
good luck anyone i missed
Love Tracy xxxxx

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Forgot to ask pixie and natalie tell us what you got in your goody bag from look good course im excited to go on mine

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Evening all - and thanks for the sympathy. Managed to get to my two groups today but seriously flagging when got home. Wig off the minute I got through the door and straight up to bed. Managed to sleep for an hour and would have slept for longer but my cuddly cat came up and chirupped ‘hello’ which woke me up.

Lisa. I know what you mean about the change of routine - I suppose for you TAX may be better because there’s a lot lower chance of nausea/sickness than with FEC.

Elaine I’m having difficulty with food too. My mouth is so sore and dry all the time and I have to force myself to eat some protein to keep going. Had two boiled eggs with soldiers tonight… old fashioned comfort food. Like you, I never had to keep retreating to bed with FEC.

Margietee - hope infusion went OK today - at least it’s a lot quicker than FEC. You probably have two days’ grace now - if the crash comes it will probably be at the weekend. Hope you escape though.

LittleChick - crossing my fingers that your liver will recover over the next couple of weeks. Good news that your margins were clear and you will escape rads.

Tracy good luck with juicing tomorrow. Steroids really are nasty things aren’t they?

Pixie, hope you’re home safe and sound and that they sorted out your jugular problem as well as putting the new portacath in.

Am off to watch TV for an hour or so, but will probably fall asleep in the process. I have a quiet day tomorrow, thank goodness, so time to recover before going out again on Friday.

Sara x

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Good evening bunnies
those of you hunkering in the back of the warren shove over as I need to hunker down big time. Had a truly tough day.
Up at 5.45 to eat breakfast at 6 as directed by hospital. Got to hospital for 9am and told I was 2nd on list so very pleased. saw nurse and to;d her I was concerned about my jugular and that first portactah wound still hasn’t healed. Said I needed to see surgeon before my op.
Surgeon came at 11am. Told me I have phlebitis in my jugular caused by scarring. This will get better in time, up to a year! Unhealed wound is not infected so leaving it be for now.
Lost my place on the list… At 2pm I went and found a nurse and said I don’t feel very well and had had no fluids since 6am and I am midst chemo and this isn’t good. Told I can’t have any water and to just lie down, it won’t be long.
4.15pm I am taken to anaesthetic room where anaethesist has a fit as my blood pressue is sky high and my heart is pumping at 89 beats. I am chronically dehydrated so he hooks me up to a 500ml drip and says I have to get 2 of these in me before he can put me to sleep. He goes to see ward sister to see why a patient on chemo has been left 10 hours without fluids. I don’t hear their excuse.
5pm I am put to sleep and have the op.
Back on ward at 6.45 still hooked up to a drip.
Portacath fitted in shoulder muscle and using arterial vein this time as jugular is buggered. Shoulder aches like mad. I was discharged home at 10pm.
OH is furious and says my care has been negligent and is going to complain blah blah… I feel too washed out, upset and just beaten down to be bothered.
So on my chest I have scar in boob from WLE; scar under arm for node removal; scar where portacath 1 went in; scar where catheter 1 went in; scar where portacath 1 came out; scar where portacath 2 went in; scar where catheter 2 went in; - I look like a frigging self-harmer:(
Sorry I am not replying to individual posts, allow me a bit of self-obsessions as me ears, whiskers and cotton tail are very droopy indeed tonight but I have read all the posts and have loved catching up = feels like coming home.
will post again tomorrrow when I hope I shall be a bit cheerier.
much love

Pixie xxx

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Morning all, hope everyone had a sort of good night, I actually got 4 hours sleep then did the ironing about 3.30am. Pixie what can I say, your treatment has just been awful, I carnt believe that you were left without any fluids for that long, they all should be shot. You know most of the care we receive is really good, and we are very lucky to be able to have all the expensive treatments ect, but nothing is ever consistant, one hospital its this way, another its that way, and the only ones who end up hurt, messed about, fed up, is US the ones who need love care and attention. I agree with your OH that treatment you received, or not received yesterday is terrible. After my lumpectomy, they could not get my drain out, I was sent home with it in. Ten days later it was still there, they deceided I need another op to take it out, which they did, then I had an infection. All in all a month later the drain site healed, but I cold have done withot it all.(sorry to go on)I really am but its not good to have to go through all that, it really brings you down emotionally. I really hope you recover quickly Pixie. I am off to the shops this morning to get supplies, check in later. Sorry again for ranting. Lots of love Elainexxxxx

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Morning all, hope everyone had a sort of good night, I actually got 4 hours sleep then did the ironing about 3.30am. Pixie what can I say, your treatment has just been awful, I carnt believe that you were left without any fluids for that long, they all should be shot. You know most of the care we receive is really good, and we are very lucky to be able to have all the expensive treatments ect, but nothing is ever consistant, one hospital its this way, another its that way, and the only ones who end up hurt, messed about, fed up, is US the ones who need love care and attention. I agree with your OH that treatment you received, or not received yesterday is terrible. After my lumpectomy, they could not get my drain out, I was sent home with it in. Ten days later it was still there, they deceided I need another op to take it out, which they did, then I had an infection. All in all a month later the drain site healed, but I cold have done withot it all.(sorry to go on)I really am but its not good to have to go through all that, it really brings you down emotionally. I really hope you recover quickly Pixie. I am off to the shops this morning to get supplies, check in later. Sorry again for ranting. Lots of love Elainexxxxx

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sorry about type errorsx

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Oh Pixie that sounds absolutely terrible - no wonder your OH is so angry. I was thinking before that you must surely have a case to put in a complaint about the earlier portacath procedure as it was clearly incompetent and has caused you a great deal of unnecessary suffering, and delays to your treatment. To have to go through all that yesterday as well is just the last straw. I can understand how you haven’t got the will or strength to complain at the moment but I really hope your OH takes it further - for the sake of future patients, if not yourself.

If you’re not allowed some self-obsession at the moment, I don’t know who is! You just hunker down at the back of the warren and know that we’re all thinking about you and wishing you better.

Sara x

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Pixie how awful. You really must complain because the whole thing has been a mess from start to finish. Thank goodness you’re back home now so off you go to the wooly recesses and have a relaxing rest!

I am feeling the worst since this started. Only on FEC3 but feel so WEAK again. Am resting loads but still get tired. My chemo arm is stiff as a board with phlebitis and I’ve put at least 4 kilos on because of the steroids. I feel about 90. And pathetic lol! So off to the back of the warren for a good talking to!!!

Hugs bunnies
Sarabee xxx

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Sarabee - you poor thing. I can relate to that except I have been fortunate with my veins (so far).

Funny how when friends ask how I am, and I say things like ‘getting better, but have just been through the weekend from hell’, they look me up and down and without missing a beat say ‘well you’re looking very well’ with the emphasis on the ‘very’, as if there can’t be much wrong with me. Of course I smile and say thanks - and I should be pleased because I’ve gone to the effort of trying to look ‘normal’ before leaving the house, and obviously it has succeeded.

However, a voice inside me is having a bit of a rant along the lines of ‘have you any idea the effort it took to drag myself out of bed and climb over edge of the bath to get in the shower, and then lean against the wall to wash, iron a top on the bed because haven’t the strength to grapple with the ironing board, drag on my clothes, cover up dark circles with Touche Eclat and slap on more make-up with cheerful lippy, put a wig on my hot and headachey head and get myself out of the house - and by the way I feel sh1t…’

There’s just no pleasing a chemo person, is there?!

Hope you feel better soon.

Sara x

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Hi everyone

Pixie, first of all I hope you start to feel better very soon. It is a complete disgrace the way you have been treated. Your OH is right. He must complain, but let him take the strain of doing this while you concentrate on getting better. My heart goes out to you.

I had my tax1 yesterday. After being checked over by the onc due to my sore throat and mega summer cold, we decided together to go ahead. I really didn’t want a delay. Fantastically the nurse got the cannula in first time this time (4 attempts last time) and I felt the ‘experience’ of tax v fec going in was much less stressful, probably due to just having the one drug instead of 3. Right now, I am having a duvet day but feel OK - but am fully anticipating the tax tank/truck/train to hit me within the next 24 hours. Such a shame because we’ve yet another ‘experience’ day coming up on Saturday if I can manage it … at the end of last year my OH bought a new BMW. The BM dealership nominated a ‘charity supporter hero’ to be an Olympic torch bearer - he carried the torch in another area but on Saturday is paying a visit to the dealership to meet invited guests and we have a slot booked to be photographed holding the torch ourselves. I’m going to drag myself there no matter what, even if just for 10 minutes for the photo!!!

It’s proving to be such a strange year or highs and lows. The bc is the obvious extreme low, but what with our jubilee pageant, my dil running the race for life, this olympic experience, tickets for both the olympics and paralympics, there are many highs. I will look back on 2012 as one very unusual year. We also had our holiday in Dubrovnik after my surgery and before I started chemo … that was amazing. I never said at the time, but for some reason we were upgraded to the very best suite in the Dubrovnik Hilton, directly overlooking the beautiful old city. Some American guests in the next door suite gleaned it was our wedding anniversay on the Saturday, told the hotel manager who organised for our room to be decked out while we were out. We came back in to find kissing swans fashioned out of towels on the bed, surrounded by a big heart of real rose petals and a gift of bathtime goodies for me!! Not bad for a 39th wedding anniversary. We have lots of photos of this and the other 2012 experiences - think I will have to make a scrapbook for highs and lows of the year!!

I’ve blown it as far as Race for Life goes - I’ve told so many people now that I am going to do it myself next year that I won’t be able to renege on it. Oh dear. Some serious training coming up later this year!!!

Well, after my 4th juicing I really am starting to feel the end is perhaps in sight. A glimmer of light is shining through from the burrow above into my corner of the warren. At my next onc meeting in 2 weeks I get to have my first meeting with the radiology onc to start planning the next stage of treatment and also I have agreed o take part in a clinical trial. It is an international trial - sample size amost 3000 - and I fit the criteria apparently. Itis looking into the use of an osteo-arthritic anti-inflammatory as a means of reducing the chances of a recurrence of bc. They believe tumours thrive in inflammatory situations and think this could help. All it entails for me is to take an extra tablet day for 2 years and have on-going check ups and extra blood tests. I can’t see a downside (except perhaps the blood letting!). This will be alongside the Arimidex hormone therapy already planned so no change in the planned treatment, plus I get the bonus of more closer monitoring over the first 2 years after chemo. Only ral potential downside I suppose is that it will be just my luck to be one of the 1 in 3 people in the trial on a placebo, but I’ll never know!

By the by, I had a scam email via bcc forum last night - someone called Vic aksing be to be her friend. Never heard of her and her email was all about her and her baby. I’ve forwarded it to Mike. Also, is anyone else getting ALL their postings from our thread direct to their email account? No need to log into the forum to read all the messages from lovely bunny friends. I’ve alerted bcc to this as well. I’m sure it’s not a secure situation.
That’s all for now. Love to everyone, especially Pixie of course at this particular time. Even though I’m not mentioning others by name, we’re all together in this and I love and value your support.

margiexx

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I sometimes think it would be bette if people said “you look sh1t” do you feel as bad as you look? We then wouldnt have to put on such a brave face all the time. That said, its quite nice to go out and to have people forget you are going through hell and and then you can forget about your problems for a bit and listen to their news, worries with interest and intent.
Thanks for welcomes again.
Does anyone take Neulesta? I take mine at night now and it has stopped the blurred vision thing that really frightened me. My head and vision (still get watery and gunky eyes) have been up until now relatively clear, with no headaches.

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Thanks Sara, it’s amazing how we try and make everyone feel better when we’re feeling rubbish. And how people see us too. Had to speak to one of my bosses earlier in the week and obviously sounded normal on the phone because he is now emailing me asking some work info which I can’t really remember. My OH is so cross!! And I feel like a wimp for not even remembering let alone caring. Plus I’m now wondering if my boss thinks I’m swinging the lead and putting it on a bit lol!
I sometimes wonder if things will ever be normal again!! Thank goodness for the love in the warren! Off to have the vapours in he back again lol!
Sarabee xxx

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Hi everyone, was lying in bed after FEC 4 yesterday, eeling sorry for myself until I read pixies post. It is outrageous and quite scary how things can escalate through incompetency like that. Really hope you start to have some better luck, Pixie, you deserve it with all you have been through lately.I would be as angry as your OH, but you probably don’t have the strength right now and just need to rest.
As to FEC 4, all I can say is that it doesn’t get any more pleasant! Every time I have had treatment, it has been via a trainee nurse, supervised by a more experienced one. While I do understand that everyone needs to learn on the job, it would be great to just have someone do the job simply and confidently; the training process slows the whole thing down so much. They took ten minutes to decide which vein to use! Usually I try to chat to them, as it seems rude not to, but this time I closed my eyes and zoned out, which was easier and seemed faster.
Hotsweats last night and nausea this morning, along wih usual bloating, despite a bucket load of meds taken. House is quiet today so am just dozing,listening to the radio and desperatelytrying to think positively.Chemo brain not allowing me to respond to anyone by name, but I do love catching up with you all, and fingers crossed that we can all be frolicking in the sunshine soon.
Much love to all, take care,
Leex

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Lisa - I have Neulasta, but only one 6mg injection 24 hrs after chemo. Hadn’t noticed it made any difference to my blurry vision - but I’m glad it does something for you.

Sarabee - your bosses are just unreasonable, and you’re not being a wimp!

Margietee - it’s good that 2012 seems to have brought you more ups than downs, so it will be an ‘interesting’ year to look back on, rather than just a difficult one. Good news about the trial… anything that potentially reduces recurrences must be a good thing. Do hope you’re OK on Saturday. After the TAX truck hit me I thought that, although I can’t know what CFS/ME sufferers go through, I might just have an inkling now - have never known fatigue like it.

Well, I’m actually dressed at last and am waiting for the rain to stop before venturing out for supplies. Might have a long wait - so much for midsummer!

Sara x

I haven’t had the scam email. Don’t know what triggers the email notifications, buti it’s happened to a few of us at different times, out of the blue. If you open the email and click the unsubscribe link that usually works. If you follow more than one thread then you’ll have to do that for an email from each thread. It should stop then.

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hi Everyone
Had tax feel ok but not going to say anymore
Pixie look after your self thinking about you
love tracy xx