starting chemo in July

[lisha]

Just wondering how other radiotherapy places work. I had my 5th zap today .Like Squirrel on my first app i was laid there an hour as the planning hadn't gone as expected and they couldn't get me in the right position .I got sent away as i was in really bad pain ,my arm had gone numb and i couldn't hardly get dressed as had no feeling in it . I was given anti inflammitarys to take. Was really dreading the next day .
my appointment including the waiting was four hours .I wasn't too bothered as i thought it was a one off.
My appointments are all over as the first two got cancelled due to the consultant not having time to look at my planning,when they rang me they said all the other app would be the same just the first two cancelled and added on at the end.I ended up with 1 at 12.40 then 1 at 2.10 then one at 9 then 4 at 2 ,2 at 12.50 then the rest more or less at 1.30 which they all should have been .
Problem is out of five appointments i have been at hospital 3 hours waiting for four of them . they have been upgrading machines on mon and today i think then one other machine broke. It was that bad when i got called in a woman had a go at my sister because i was called in before her and apparently her app was before mine ,it was 3 hours today.Its not the staffs fault must be frustrating for them and they are all so lovely .Just wondered what everybody else experiences were . Im hoping it gets better as it goes on.The staff are very apologetic but its not their fault if the machines keep breaking .

[Guest user]

hi all
squirrel hope zap 2 goes ok first wk was ok for me.bit red this wk am a bit worried as i have another 3 wks to go?are you on tomixfen and if so how are you getting on with it?
anne glad you had a good wk end hope you have your op soon and not right on xmas so that you can enjoy it.
hope everybody has a good day#
queenie

[Guest user]

Hi All

Sounds like we are all getting to grips with either the end of chemo or the start of RT, or hats flying with the wind.

I was away the week-end with friends in Bristol. We walked about 3.5 miles from our hotel to Ashton for football which was about my limit. Had to take wig off and put a scarf on as my head so hot etc. then just wore a thermal hat for the duration. I did feel light headed and a little sick so got checked out by St John's and although they were impressed I had walked so far, they said I had probably over done things. So I got a taxi back to hotel and had a sleep at the end of the game.

Hospital left a message for me on home phone yesterday re a date, but she said a letter would come out to me. Ooooer MX getting nearer........

Good luck to all who are having treatment this week.

All the best

Anne xx

[squirrel45]

Loving the flying hat story Lisha! We gotta laugh ! Had my first Zap today and didn't find it very easy. The machine stopped working and I was left with my arms above my head for what seemed like an age.I was scared to move in case they zapped the wrong bit and quite frankly was at the end of my tether and starting to panic. Not like me ! The staff were great and let me have a rest before a second attempt which I managed but I was shaking as it must have irritated a nerve. Not looking forward to tomorrow 😞

[Guest user]

last fec great news.hope wed goes ok and the rest is a doodle.have you got to have a op or rads?

[Guest user]

Thanks Queenie.

Have just finished a round of ABs and back today for bloods for FEC on Wed.

Woke up yesterday with pain in ribs, below the Mx. Feels like it's muscular and hurts when I raise my bad arm (which had regained all it's mobility)

Think I'll mention it when I go in today.

Probably just the way I lay in bed on Sat night.

June

[Guest user]

morning second wk of rads.having second lot of tattoo`s for the last stage(booster)oh says my hair is starting to grow back ,but think he is only trying to please me lol(bless him)
good luck squirrel hope rads go ok i have started taking tamoxifen already stared first day of rads.seems ok,have a few issues but not sure if its the tam or penacian iam on for a tooth infection!!
if`s it`s not one thing it`s something else
will i ever feel normal again!!!!!!!!!
sorry for going on will get it sorted all out in the end
anne good luck this wk hope all goes well
gypsy hope alls well with you

[lisha]

lol june xx

[Guest user]

Sorry Lisha.

He! He! He!

Love June

[lisha]

Hi Anne ,so pleased your results from your scan were good ,its scarey when you are waiting.
June only one to go now,thats great wont be long now .
Queenie hope your rads are going well ,ive had 3 now and had my planning for my boosters too .
Squirrel good luck for your rads on mon.
As for all the other lovely ladies on here hope you are all well and have a great weekend.
My hair is starting to grow back but i am impatient with it lol was gonna book a blow dry next week but think i better put it off for 6 or so months !!To add insult to injury my hat blew off yesterday in the wind ,the first time ever .Luckily it didnt phase me too much ,just glad my sister wasnt with me as she has a wicked sense of humour and i would have had to pick her up off the floor from laughing. Good job we can laugh too ,think sometimes thats what has got me through this .I am so not impressed with my new colour though ,looking a bit like a badger seem to be grey with dark bits in !!!Oh well its growing.
Take care all and dont laugh too much about my hat xxx

[Guest user]

Thanks Anne, that's exactly how it feels. I was starting to think I might shave it off again if I had any more nuisance from it.

Love June

[squirrel45]

June, so pleased that you have just one to go now - that is good news! I start rads on Monday. Have been given nifty little blue number to wear during treatment - unzips to expose the area. They rang to check I was still alive/coming for treatment and said not to wear the gown to the hospital but to change into it once I arrived!!!
I suspect some poor soul must have turned up wearing one at some stage. Fantastic a garment as it is, I will resist the urge to wear it on nights out on the town/gardening !
Really pleased for you too Angel. Excellent news!
Desperate for the hair to grow but not much is happening. Its still in a sulk because I pulled out some stubble with toupe tape. Sigh

[Guest user]

morning all .hope you feel better soon anne,good news about the scan hope all goes well from now on.
hair still does`nt now weather it`s coming or going wish it would start to grow.fed up with a cold head.(or hot and sweaty when i have power surges)!!!!!!!!.
takr care all
queenie x

[Guest user]

Hi June

When my hair started to show willing again it hurt in a similar way to what it did when it started to fall out.

Got CT scan results today and my lungs all clear I am over the moon with that, have been so worried.

Have also got a virus so picked up more ABs tonight, ankles swollen too.

All the best

Anne xx

[Guest user]

My hair started growing when I started on the Tax.

But my head feels irritated with it.

I keep rubbing my head but dont know if it's a headache or the hair growth.

June

[Guest user]

Great new Gypsie, the end is near...!
Mascara's not great queenie, but I suppose it's a small price to pay to blast this little bc! (nearly swore then, but as not on steroids at the moment, I was able to refrain!)
Hope your rads went ok today xxx

[Guest user]

morning ladies were have you all gone!!!!!!!!!
gypsy only 1 round thats great news and by the sound of it you don`t need rads so thats double good news.
cherrytom hope your mascara stayed on day 4 of rads for me soon the wkend and have a break,hair cant make up its mind starts griwing then falls out have a white dusting all over its the dark that falls out.still its early days
take care
queenie

[Guest user]

Weeee!!

Had some great news today.

No bloods, Don't know about the infection, but I'm still on the antibiotics.

BUT. Saw the Onc today and this round of Pax is not agreeing with me, so I'm back on FEC next week. AND ONLY 1 ROUND. So next Wed is my last Chemo.

Only the Herceptin to get through then.

WoooHeee!!

Love and Hugs to everyone
June

[Guest user]

Hi Queenie, rads start next week. I'm going to venture out in a minute - I am armed with many tissues! Would just like to keep the small amount of mascara I can apply, to stay on my stubby lashes rather than be wiped on to my cheek!
take care xxx

[Guest user]

morning all
cherrytom dry thoose eyes,hope you feel better today hope the hf or now some women have told me they call them power surges sounds a bitt better !!have you started rads yet?
gypsy hope all has gone well for you and bloods ok
were is every one hope they are all ok.
take care
queenie x

[Guest user]

Very true GL, it is all a bit surreal. Who'd have thought last year when we were celebrating Christmas and toasting the New year, we'd be where we are today! Hope bloods are good for your appointment today and you haven't got an infection brewing.
I'm feeling less gloomy today, although mighty fed up with the watery eyes phenomenon I seem to have aquired! Everytime I go out they stream, making my vision blurry and making me look like i am crying!
Take care all xxx

[Guest user]

Had bloods on Mon for Wednesday's session. BUT, looks like I am brewing up another infection - The line wouldn't give up the red juice.

WBC very low so Onc Review on Wed and more bloods to see if I can go ahead on Thursday.

CT... We have all faced so many changes over this last year it is no wonder we are overwhelmed at times. I asked my OH yesterday, on the way into the hospital, 'when do you think I'll wake up from this nightmare?'

Cos that is how it all feels, as if it is happening to someone else, and I am just a close observer.

Love and Hugs
June

[Guest user]

Hi all, just dropping in to say "hi" as not posted much recently. Hope everyone's spirits are up. I'm now nearly 3 weeks after last Tax and the Tax blues got me at the weekend. Seems to be rearing its ugly head for all of us at one time or another. Getting lots of menopausal symptoms - hot flushes, night sweats, stiff joints etc...- maybe the lack of hormones could be to blame for my mood drop? Like many of us, I didn't think I'd be going through the menopause for a good few years to come, but bc has the ability to turn everything upsides down. Within a few months we have to deal with so many body changes, internal and external, it a wonder we manage to get out of the house at all! The emotional impact of the trauma of dx/surgery/treatment feels so very, very big.
Have my rads planning meeting today, so hopefully rads will be over by Christmas.
Good wishes to all xxx

[Guest user]

morning all july`ers were ever you all are!!had first rad yesterday was ok also started tamoxifen seems ok i surpose it`s early days still.hope the side affects arnt to bad!!!!still cant sleep night sweats.hopeyou hear soon.
anne hope you hear soon about your op
carol tryed calms at the start did`nt work for me but as they say every body is differant so it might work for you.
sharon hope all goes well for tomorrow
take care all

[Guest user]

Hi Everyone

Thanks for the virtual hugs and advice.

Still no sign op date, not that I am wishing it too soon but do just want it to be over really.

Just waiting on a finger nail coming off which is currently hanging on. Today I have felt really tired, it is like I got out of bed this morning but my get up and go stayed there. Was also really cold as well.

Tried a small glass of red wine and a curry for the first time in months on Saturday. Hhmm tummy did not like it very much.

Have a good week everyone

Anne xx

[Guest user]

I had my last chemo session today and I can't tell you how happy i am to have got through it all relatively unscathed!! My wee tiny bit of fuzzy hair is visable now and I'll be watching for it growing back as fast as possible although I really know it will take a while. Well just 18 Herceptin and five years of Tamoxefen to go.
I hate the night time sweats, throwing the duvet off then chilling down and pulling it back up but I don't have a clue how you can avoid them, still having trouble sleeping without sleeping tablets but the doc not keen to give me more so I will just have to bear it or try calms sleep aid - does anyone know if they work?
Hope everyone has a good week with small SE if any.

Carol x

[Guest user]

how`s everybody coping with night time sweets and has anybody got any tips.sorry sharon to here that your rads have been cancelled hope all goes well for wed you will still be finished by xmas which is good newstake care all xx

[lisha]

Hi everyone, Anne glad things are moving for you and you got the news you wanted.
Queenie good luck with rads, i was starting mine today too but they rang up on fri to cancel till wed. Grrrr!!! Hope they dont cancel on wed.
Squirrel great poem on the poetry thread.
Take care everyone. Love Sharon xxxx

[Guest user]

morning ladies how`s it going with you all.start rads today and tamoxifen so will have to see if the night sweets get any worse!!!!!!!!!!!!!!!!!!.hope you are all well.and if you are waiting for op hope all goes well.good luck to you all

[Guest user]

Angel

You must be relieved that things are moving for you.

Once I'd decided on the Mx I just wanted it over and done.

You'll need to rest up for a few weeks afterwards, but I found I recovered quite quickly. I was getting good movement back by my post-op appointment (10 days) but had to back under the knife, 14 days after the first op, for more glands to be removed and some more breast tissue to increase my margins.

The walking up the wall is the worst exercise they could ever devise, but the best. (you'll recocnise this one when the physio tells you about it) I extended that one to hanging out washing, I used the washing line to gently pull the bad arm higher while I pegged.

Good Luck with the pre-op psyching. I'll be offering a cyber hug for the second week in Dec.

Love
June

[Guest user]

Hi Everyone

Have had all the scans now but no results from CT as yet. BCN will ring me when they get them through.

I saw the surgeon on Wednesday and there was good news, they were pleased with the way I have responded to treatment. The op will be around second week in December and they will take everything on the right side away, including all the glands. Depending on the results of the operation and analysis I may not need radio therapy.

Just psyching up for op now.

All the best

Anne xx

[squirrel45]

Hi June, you are really going through it ! At least the Herceptin and Pax are in the system now and it seems like the premed is working so hopefully the next dose will go better too. Good luck with the udder cream.....I could joke about it getting you moooving but I will resist ! Hope it sorts the hands out I bet they're sore!No washing up !! Take care Andrea

[Guest user]

Well Herceptin 2 in and Paxlitaxol 2 in.

I managed to take the full dose of both of them so the pre-meds worked.

Yesterday was such a long day (8.45 to 3.15) We should get paid.

Losing skin from my feet and have been advised to search for 'Udder Cream' seems it's a thick cream used by farmers on .......doh...... cows udders.

The idea has generated an addition to the poetry thread (hope it's appreciated)

Small se's wished for everyone being pricked and poked, prodded and processed this week.

Love and <<
June

[Guest user]

Those stomach cramps lasted from Friday through to Tuesday.

Nurofen started to ease them, but left me with Heartburn.LOL

Seeing Onc before being zapped today to see if they are expected to continue throughout this set.

Hoping to go to Scotland early Dec to visit my daughter with her Christmas pressies, OH is starting to talk about not going if I am still having problems, so gotta get sorted.

Love to All
June

[Guest user]

Oh! Hope this weekend is not a taste of the weekends to come.

I am due Paxiltaxol every week now and since friday I've had stomach cramps (muscular)

Interesting, finding out the different se's with each different drug.

I could do with a vist from the sleep fairy tonight too, so anyone bumping in to her please send her to my tent.

Hugs
June

[Guest user]

well done anne, i know feels good eh , think my hair is brownish as long as not grey i was dark
brown before ! im gonna do race for life next june walking lol x
take care xxxxx

[Guest user]

Hi

Shapb doesn't it feel so good to say last one over. I am still waiting to hear on appt with surgeon but had scans this week. The ultra sound was good news, glands gone down and she played hunt the tumour in my boob. Will not know CT scan results as yet, but really really hoping lungs clear.

My hair is also coming through and cannot make up its mind what colour it is going to be. My sister reckons blonde the colour I was as a child. I was brunette by the time I lost it. My aim is try and stop wearing the wig no later than 30 Jan, which will be 6 months to the day I started wearing it.

I went out walking with friends this week, first time in months, it made me really tired but I walked about 3 miles which I was pleased with. WE are getting in training for the Walk the Walk in May. Not sure if I can do 26 miles but going to have a dammn good try.

Hope everyone has a really good week-end

Anne xx

[Guest user]

yippppee last tax yesterday so happy my chemo is over , just waitin now in
operation date should be 3 wks time 🙂 gettin there girls oh and my hair startin to grow a wee bit , things looking good 😉

luv to all hope we all
keep well this week with se xxxx

[Guest user]

Well Pax 1 done only 8 to go.

Bit of back pain 1/2 way through but ignored it and it passed.

was kept in for 2 hrs on obs and pretty tired last night so it was a PJ and Sofa night.

OK today.

Small se's to all
Love
June

[Guest user]

hi girls
yippee last tax tom am excited 🙂 xxx

[squirrel45]

Hi everyone ! Angel good luck for your tests this week, hoping for some good news for you :-)!
Hi Queenie, fellow FECmate, I haven't had the flu jab yet, onc recommended 3 weeks post chemo so another needle awaits. Feeling Yeuk but blaming the Filigrastim injections, zero energy, taste buds departed but somehow loving Marmite at the moment! Hope the planning scan went well and you like your tattoos!
Luckylil, hope your last FEC went well, and keep posting. Its great to hear from you. Send us some sunshine !

[Guest user]

Hi LuckyLil

Of course you can visit us anytime you like. I hope everything goes ok.

I am off to get post chemo mammogram and ultra sound tomorrow, then CT scan Friday to check if my lungs are now clear. Fingers crossed

All the best to everyone

Anne xx

[Guest user]

morning july`ers hope all taxers ane fecers are ok
day 5 post 6 that(feels so good).just need to get past s/e ane getting back to normall if i can rember what that was like.havent had a flu jab yet hope to have one when bloods are you has anybody else not had a flu jab?markup for rads on wednesday so find ou how meny most likly it will be four weeks ha ho just get on with it.
hope you all have a good day
queenie

[Guest user]

Hello Lovely Ladies
You have all been so kind to take the timeout to write to me. Thanks so much for all the helpful advice. By the sounds of it I think I should make plans to stay in SA for at least a week after my first Tax.
You all sound so super, so can I keep popping back to this thread to say HI and see how you all are??
Am off to SA for my 4th and last FEC before the dreaded Tax starts...of which I am due to have 4 as well.
Hope you all have a FAB week with tiny SEs and HUGE smiles
I read a lovely blessing earlier that I just have to share with you....."May our lives all be as good as we make them out to be on FaceBook".....hehehe
Hugs
Lil xxx

[Guest user]

Hi luckyil, my hair started to grow back after Fec and starting Tax. It's very difficult to predict what se's you'll have or not, we all seem to get similar things in varying degrees. I have found Tax better than Fec and I had my last one yesterday, so feeling good about that!
Best wishes to all xxx

[Guest user]

Hi Luckylil, Welcome to the July forum.

I had 3 x FEC then 1 x Tax. I had an infection too, Squirrel, and got 'locked up' for 8 days. They blamed the Hickman Line so that's been replaced.

My 2nd Tax I had a severe reaction and my back went into painful spasms (the Sister said it was a first).

Saw the Onc. this week and I'm moving on to Paxitaxol, there was talk about going back on FEC. Also I'm having extra driugs to help get the Herceptin in. So Lil, they will change things if you need them.

Being near the hospital may be advisable at first, just play it by ear, if you find you can cope then you may be able to get back home inbetween treatments.

Good Luck, and post if you fancy a chat.

Love
June

[squirrel45]

Hi Lucklil, great to have you join our thread. We are going global ! I only managed one dose of the Tax as I developed an infection and it had wiped out my neuts despite taking Filigrastim. This resulted in a very swift admission to hospital and IV antibiotics without which I could have been extremely ill. My neuts have always struggled, even on the FEC and maybe that was an indicator that it was going to take it out of me. I was extremely tired, felt very flu like and ill but how much was the infection I don't know. Its a tricky one to answer as we are all different. After my experience I would air on the side of caution and certainly plan to stay closer to a hospital at least until you pick up. What does your oncologist think? You could maybe try one cycle and see how it goes but you are so far away from help in the bush. When my temp went to 38, the hospital said it was imperative to get antibiotics in within the hour. Other ladies have had a more positive time of it, its just a hard call isn't it ? Hope you have friends in South Africa that can support you ! Wishing you all the very best in making a decision thats right for you ! Andrea x

[Guest user]

morning all.luckylil welcome hope all goes well wieth your treatment i had fec only so cant realy help with tax,but meny a kind ladies on this site will be able to help.
hair was growing now not to sure have a white fluff so there must be something did have darker hair growth but that has falling out.have had last chemo so hopes it starts growing again,
sweats and fluhses still going strong.bcn said to get a feather duvet and pillow so will do.has anybody started tamoxifen yet?am takrn the movicol not working yet!!!!!!!!!!!but hope it will soon.still ha ho last one (yipeeeeeee)
take care fellow fecers and taxers
queenie x

[Guest user]

Hi Luckylil

Welcome to July posts, all visitors welcome.

I think that some of us on TAX have suffered a little more than we thought we would, but the docs will adjust things to suit and give you all the support you need.

There is someting to be said for expecting the worst and when you don't get it everything is a bonus. Personally I had a relatively trouble free FEC and then a problem filled Tax, but plenty of others had a lot fewer problems. I guess your reaction will not be predictable and you won't know until you have it, sorry.

I agree with Cackles, have all the things your draw comfort from around you and settle in, but be prepared that you may have to be close to the hospital if you do have a reaction to the Tax.

All the best

Anne x

[Cackles]

Luckylil I should not be posting here because I started Chemo in August. Suprise suprise I am awake and browsing the forums for wisdom!!!!! Tax is a funny drug and if you look at the thread "positive postings about T " it seems a bit negative.......however if you look at the second cycle everybody is more upbeat. You are going into the back of beyond and your team will get you everything possible to make it easy for you. a temperature spike occurs at day 5-6 and antibiotics can be given just in case. Gcsf can be given over a week to up your neuts and of course you can rest and try not to get any infections......it's just not worth it. I have lots of help in the house as you will so build a nest, get in the videos, books, sewing and think it will soon be over. If you can be near a hospital all well and good......one less worry
I goes fast really , the first s the worst. Prepare for bone ain day 4-6 and ake the tabs. MIND your bowels though. Ugh!!!
My bald ate is now producing after eight shadow. But I am still looking for my badger pelt with blonde ends....
Hope all goes well for you. Do pm if you have a problem
Big Hug
Cackles xx