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Anyone starting chemo around 20th november?

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Re: Anyone starting chemo around 20th november?

Hi all
well its that time of night again, good news that i am well enough to be up this time of night and had just2 glasses of wine and feel bit squiffy !!
Rang BCC nurse today still awaiting radiotherapy date finished chemo tablets last Tuesday.
Feeling sick still and quite lightheaded when i do anything "normal" I.E. paperwork, catching up with home utilities bills, ironing etc.

How will i ever cope at being back at work full time? Concentration levels seem to be zero, busyness / people around me seems to do "my head in" ....do you feel like this???

Scared of what the future brings? Was rather career minded and wanted to progress but now feel like i am a "junior" again.

Hope all is well with everyone else. Sorry to near that your sad news Vicky i guess like all of us you wonder when it will end??

I have some crap news about OH job but complicated so not in the mood to post, but it is so distressing,wonder what coping mechanisms are out there sometimes, all this "oh it will be alright" rubbish

Sorry for ranting, really down at mo.
Take care all, i wish you all the very best from my heart xxx

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Re: Anyone starting chemo around 20th november?

Hi all,

lavendersblue
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Re: Anyone starting chemo around 20th november?

You are so right...I have not gone to so many things , because i didn't want to run the risk of infections...I have become a bit more adventurous on the Xeloda though I have to confess...even went to the theater last night to see " Cabaret " .....which was a real treat after all this time.

Do you have a date for your Rads ? I have an appointment to be "set up " and tattooed on the 8th May , but no dates to start the treatment as yet...

Enjoy those beers....

Hugs,
Jill .

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Re: Anyone starting chemo around 20th november?

Thanks very much for rememberin OH eye...it's fine he was discharged from hosp with no treatment needed which was great news and he hasn't complained about it much since so hoping all is well. I am a bit tiddly and it feels great had a few more corona since my last post !!!
I am celebrating !! but it is so strange feel weird having a beer and relaxing thinking i shouldn't be and should be going to bed early and being "careful" gosh what this bleedin cancer diagnosis does to us more mentally sometimes than physical....guess we will never be the person that we once was eh ???

lavendersblue
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Re: Anyone starting chemo around 20th november?

So good to hear from you again Blondebird , great news about your bone scan too....lucky you having taken your last Xeloda , time to celebrate .
I took my last one of this regime yesterday and am on my free week now....have only got about 140 more to take and then I am done too....yippeeeee !!I lost two weeks Chemo time with my eye , so I have fallen behind you ...they held up the Xeloda in case I needed an op.

How is your OH's eye problem by the way...I can sympathize with him as I have had laser treatment 3 times for torn retinas !!

Hope all is well with everyone else...Vicky, Many Fiona hope you are all OK.

Hugs, Jill

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Re: Anyone starting chemo around 20th november?

Hi Jill lovely to hear from you and sorry that you have had such an awful scary time, what a nightmare as if a cancer diagnosis wasn't crap enough. Agree with the feeling sick most evenings awful isnt it, nothing seems to shift it with me and sod the tablets i can suffer the sickness feeling a LOT better than constipation from the tablets !!

I haven't experienced fluid but did not have a clearance - 4 nodes removed for me.

I have today got results from bone scan - CLEAR yippee yippee yoo what a relief, think the pain can only be "normal" after what we've been through, some nerve damage maybe, but at least i do know that these awful aches and pains and feeling like i am 80 not 36 are down to the treatment we are having to endure eh?

I also took my last xeloda tablet yesterday a double yippee. Waiting on a start date now for radiotherapy.
My hair is what i can only describe as hedgehog like, still so short so don't know if i will be having chemo curls yet or not...

How are you doing Vicky? I've seen your other thread about your FIL so sorry to read that, and you are so right cancer is such a bl**dy awful crap nasty pig and i hate it. So happy to read that your scan is also clear bout time for some good news. Hope your chemo went as well as it could be on Monday and you aren't feeling to s**t.

How did the genetic test go Mandy? What did it entail? When do you find anything out? Hope you are OK?

Anyway take care all and lots of love, i am treating myself to a corona beer the first one in weeks.....xxxxx

lavendersblue
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Re: Anyone starting chemo around 20th november?

Hi Everyone,

So good to be able to still recognise a few names and find this strand again...

I had a retinal bleed in my left eye in Jan and lost the sight in that eye for 2 weeks.....couldn't use the computer for ages !!!

I am nearing the last week of my 3rd course of Xeloda .....so far not toooo bad ..LOL. I feel sick most evenings and keep nibbling to try and get rid of the feeling. I have had sore feet for the last few days and the runs...but they are both clearing up now ...so hope they were just a glitch , runs might have been a dodgy curry!!!

I lost all my hair during the Epi regime...hair on head and body...the worst was losing my eyebrows ...just looked so blank all the time !! It is all starting to grow back now...hair on head is straight though and I was hoping for curls LOL .

The worst problem I have is fluid under my arm and in my left breast from the axillary clearance..it is often still swollen and painful...5 months after my last op......anyone else have this problem ?

Hugs to all...

Jill

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Hi all,

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Hi everyone,
sounds like wa few of us are looking at genetics, me too, onc said history is a bit patchy but he will write to dept and it will be up to them whether they contact me.
Chest pain still there and on examination with onc on Monday for last cycle of xeloda he made my eyes water it was that painful. He said he didn't know what it was didn't think it was the cancer come back but wanted to make sure so i have a bone scan on Thurs. Gosh does this ever end, the waiting the worrying, the paranoia...it's so pants. I keep feeing a bit light headed too and dizzy...don't know thats all about? Over tiredness perhaps?

Don't worry about too much info Vicky, my sore bum has thankfully behaving itself at the mo, what a relief, it has been unbearable at times. How's your line? Hope the oozing has calmed down. Hubby decided definately on new car? What you after? How was the CT scan? When are the results due?

Have a nice weekend everyone and take care
xxxx

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Re: Anyone starting chemo around 20th november?

Mandy,

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Re: Anyone starting chemo around 20th november?

Hi everyone
sorry not been on here for a while, it is nice to say that i feel pretty OK at the mo last cycle of xeloda starts Tuesday and then rads so hasn't time flown since this thread was started eh?

Sorry to hear that you are having a pants time at the mo Vicky certainly sounds like you have been having a really hard time. Thining of you for your CT scan xx

Thining of you Mandy for your genetic test too and make sure you enjoy that break !!
My hair has also started to grow back and getting thicker by the day and i did lose it all, even put gel on it today for the first time in 4 months woo woo !!
The tiredness is the worst for me plus the chemo brain, the paranoia and the sore bum days 😞 even on xeloda which is supposedly more the other way...!!!
Went to the hosp last Monday as having chest pain and had an ecg just to make sure all was fine and it was thank goodness, at least they are on the ball and advise to come and see them when i say someting is feeling wrong.

Take care everyone xx

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Re: Anyone starting chemo around 20th november?

Oh Vicky... sounds like you've had it rough just lately, and so sorry your line is giving you grief.... I met the lady who was in the next bed to when I had my mast, really didn't want to see her in chemo as she had other problems as well.. anyway she told me something similar to what you have just been through with her line then getting an infection and a reaction to the antibiotics.... and here's me telling everyone its ok... I guess I was just lucky.

In anser to your question, my Onc said theye had been quite severe with the chemo goven the fact that all cancer was removed in surgery and my CT scan and Bone scan were also clear, that she didn't see it was necessary for me to have Radiotherapy, and I won't be having hormone treatment as I am triple negative and it wouldn't benefit me in any way.

District Nurse is taking my stitch out on Monday, just in time for my hols, its so nice to have a worry free bath... oh bliss!!!!

I think my hair is growing back slowly.... the back of my neck is all soft like a baby. I never lost it completely as I cold capped for the first 4 chemo's.

Got my Genetic test on Tuesday... just when you think its all over, there's always another test results lurking around the corner... I'll let you know how that goes.

Take care everyone.... M xx

Flo62
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Re: Anyone starting chemo around 20th november?

Glad you are home now Vicki....Feel really chuffed I lifted your spirits. Would have popped in every day, if known earlier,..but hey ho. As said to you, DO call me even if you fancy someone making you a cup of tea. If it's nice you can always come and sit on my decking and let kids play on trampoline/swings in the garden!

Boob now quite pink and can certainly see the area that is being zapped now. Hardest thing for me is the tiredness. Didn't have such a bad time as you when on chemo and energy levels weren't too bad...or rather they came and went. The radiotherapy seems to drain me. I've had 3 migraines since starting tamoxifen. Went to docs last night just to talk over tamoxifen and get some more... She thinks is too much of a coincidence not to be the tamoxifen. We are trying a different brand..the more expensive one...good threads about this on hormone therapy......

Hope the weather keeps up - seems to lift everyones spirits too. I also have an excuse to get out into the garden and 'potter'...not today though as having to complete cake for 21st bday party tommorrow (my sister in law has 'live in help from Madigascar (she has a 3 yr old and 2 1 yr twins) and it's her birthday. However now told there is going to be about 28 adults plus kids there so may have to rush out and get more ingredients to do 2nd cake!

Hope everyone else doing well.

speak /chat soon. Fiona...

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Mandy,

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Thats it... all done... just had my last chemo, and as a brucie bonus I had my Hick line removed aswell.... apart from a bit of fumbling it was absolutley fine. They gave me loads of local anesthetic and once the cuff was out within 2 seconds it was out! Then I made a pratt of myself and blubbed at the hospital. Although its horrible to have chemo, I will miss the staff and I have made some good friends there, so I'm all emotional right now but in a good way.
No more chemo, no more poking, no medictaion... the hard bit really is all over apart from a few follow up appointments.
Within half and hour of getting back home I booked a cottage break away for the 27th March for a week.... can't wait, then I can think about going to work full time. Work have been great, they are going to refer me to Occy Health to assess my working hours so I can start gradually.
I hope the end is in sight for you guys.... and that its being kind to you. Speak soon
Mandy x

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Oh

Flo62
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Re: Anyone starting chemo around 20th november?

Good to hear from you Vicki..wondered how you were doing.

Now everyday at Christies...been posting on thread in radiotherapy. God its so busy there. Been okay until today when I was moved to a different 'suite' (They have 11 or so suites) to my normal team. I do believe one of the girls was training but blo**dy hell did I feel like a piece of meat on a slab. It took all my effort not to cry as felt a non-entity and it hurt as I was prodded this way and that in some hope that my boob would move into position just by moving the skin around and not the body!! They hardly spoke to me...I could have been a dummy!! At the end of it it wasn't...thank you or anything. I couldn't even get changed as someone was using the only changing room there. I had to walk right back to suite 3 to pick up my appt card and I ended up going home in the blue gown with my coat on top. I actually burst into tears when I saw my friend. I don't think I have ever felt like this...just a number. Perhaps that's how the jewish people felt in the war/camps.

anyway apart from that things generally okay here. Shoulder a bit stiff but with the exercises they give you it's fine.

Send me a txt and we'll def meet up huh?

Mal - hope you are well and getting back to a 'normal' life

Love Fiona x

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Hi All,

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Thanks Mandy,

,

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Re: Anyone starting chemo around 20th november?

Blondebird - glad you got your teeth sorted, sounds like you too have been asking yourself - is there anything else!?
I think like you said they want me to have the genetic test because I'm triple neg and because I was 29 when I was diagnosed. I am really hoping I am a freak of nature, I keep telling everyone that the surgery was easier than the chemo, but given the choice I would rather not do any of it again! I think if you are worried about it, you can request the test, its just a blood test so I'm told, I think you have the right to know so I would mention it to your Onc.

snottrags - I had a Hickman line put in after the first lost of FEC. I havn't had any probs with it apart from not being able to get blood out of it, so I have to have blood taken in the normal way. I was sedated but awake, there was a pushing and sugging sensation but didn't feel pain during the procedure. My shoulder ached for about a week, but once I got over that having chemo has been a breeze and unlike when it goes in your arm you can't feel a thing. Hope it al goes well for you when you have yours put in. Let us know how you get on.

Mands x

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Re: Anyone starting chemo around 20th november?

Thanks Vicky xx

I didn't have to have a line, i did have loads of trouble with veins though and know how distressing it is and i thank my lucky stars that i got the tablet chemo part of TACT trial after the epi as veins were getting worse each time - my arm is still sore and icannot stretch it out fully yet two months later...

I have read other posts on the forum about lines and how much better it is and how they wished they had had it put in sooner, so i guess that speaks for itself. Good luck with it and try not to worry too much, though we all do don't we.

Take care from me on another sore bum day 😞 !!

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Re: Anyone starting chemo around 20th november?

Blonde bird

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Re: Anyone starting chemo around 20th november?

Hi everyone
Thanks for thinking about me....all OK with the teeth now thank goodness....although they did NOT have my notes again and were not going to do op, think my near hysteria and OH's threatening stares convinced him otherwise....the aesthetic of course gave me chronic constipation again and it was soo flipping awful i could hardly bear it made me feel so awful, i just cannot seem to get the medication right either so end up the other way, it so frustrating trying to help myself and not getting it right, the lack of control over all of this is driving me insane. Still struggling to sleep at night, try to think positive thoughts and nice plans as i lay there in bed and then the dark thoughts just creep in and take over....bugger off i say 🙂

Finished cycle two of xeloda this am cannot believe 5weeks gone already. Two weeks ago starting period spotting really light and has been continous since, Sunday came like a proper period so looks lik the ole hormones are starting to be active again.

OH has hosp appointment Sun to see eye clinic guy for a second opinion, so fingers crossed all will be OK there.

Gosh Vicky what a totally crap 3 years you have been experiencing, hope you are managing me time still, happy belated anniversary hoe you enjoyed the wine, (I stil cannot face alcohol !!) I know what you mean about the tiredness, i guess because it cannot be "seen" that people presume we are OK and should be "OK" eh. How was the CMF? How are you feeling?

Keep up with your me time too Fiona, sorry to hear that you are also having to deal with marital problems as well as all the bc crap. Are you having radiotherapy now as you posted that chemo has finished?

Good to hear from you too Mandy, i know what you mean about seeming like ages ago and really cannot believe that 3 months has passed so quickly, even at bad times when it felt the day would never end. Can i ask why the genetic test, is it purely because of your auntie? Can you request one? I am asking as i am triple negative and sure that i read somewhere that there is a link to genetic gene...could be wrong. Cannot offer any advice though sorry, dont know anything about it myself.
Hope the Docetaxel is still treating you better than the FEC.

Well lovely to catch up with you all, hope everyone is having me time and looking after themselves.
Take care
xxxx

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Re: Anyone starting chemo around 20th november?

Hi Ladies... Sorry I've not be on here much for a while... I started Docetaxel 3 weeks ago, had 2 now, and I have to say its so much better than FEC! Granted the taste is rank, and I ended up with oral thrush, but I have not been sick, and the aches and pains appear to be bareable, although the "chemo shuffle" is amusing my other half somewhat!!
So how many of us are nearing the end of the treatment now? It seems like ages ago this forum began back in November!!! I have my last chemo on 13th March and can't wait!!
I have an appointment on March 26th to test to see if I am genetic. I really don't know how that will pan out. I only had an aunty who had BC about 15 years ago and she has been fine since, and thats where family history stops. My Onc said if there is a strong gene there they would recommend another Mastectomy as a precaution and possible have my ovaries removed too... I suppose there are levels of how much gene you can have to determine the next stage??? any info on this would be useful.
Hope you are all doing well with your treatment. Take care eveyone.
Mandy xxx
Hope everyone is

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Re: Anyone starting chemo around 20th november?

Hi

Flo62
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Re: Anyone starting chemo around 20th november?

Hi Girls,

Sorry not posted...life, kids etc getting inw ay of 'me-time' again. Even if it's to get my hands on the laptop to type this. I can tell when my 13yr old is here as the laptop always goes missing!

Blondebird...been thinking about you and your tooth op. I'm hoping that no news is good news and you are recovering ok. How's hubby ? How did the eye clinic go....hope everything's well on that front.

Vicki...ru okay. What a few yrs you've had. Your stress levels must have been so high over that period. How's the OH at mo (I hope he's better than mine is - I had been to solicitors prior to BC dx to find out about divorcing him...but when all this hit plus the death of his dad the same week I put it on back burner hoping it would all change....some things have changed, but the same problems are still there just been put on back burner as well. Now that chemo finished seems to going back to the same state prior to dx.

I DO hope that your OH realises how hard this all is esp with little ones around and he's pulling his weight. I hope he's not like mine and almost putting his head in sand and not dealing with it v well. Hope to see you soon. When do you go back to SHH. Could pop in to see you or we could do that coffee we missed when I was poorly. Let me know.
Love Fiona x

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Hi,

B

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Hi Everyone
Hope you are all going as well as can be expected ??

The snow certainly looks beautiful and i have admired it from the sofa the last few days but ventured out today for a walk bit bleedin slippy...looks like we are in for another downfall Mon.

Eventually got a call from hosptial today re my tooth, they have a cancellation apparently for Sun so got to be there 0730 and they assured me on the fon that they have my notes this time !!! As much as i am pooin myself (even after all this bc crap) i just want it over and done with.

On my rest week of xeloda and so far so reasonably OK, skin on body quite dry quite nauseas at times but can cope with that as the constipation from meds is worse in my opinion. eyelash stubble coming back by the looks of it and all i can say is carry on growing growing growing 🙂 Seeing onc on Monday to get next lot and hoping for SE's to remain stable....

Bit concerned about OH now, we went to optician today as he has been getting headaches and floating bits / kaleidescope / flashes in his eyesight and headaches for the last couple weeks, after examination they have told him to go to eye clinic at hospital tomorrow as they are concerned that his retina maybe peeling away 😞 bless him, just hoping that they are wrong and hosp say so...

Anyway enjoy the weekend ladies and take care all xx

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Hi all,

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Hi
Great news Fiona, so very pleased for you xx

Not heard anything about my tooth yet, awaiting an appointment, onc said best to do in my week off tablets which will be from wed 4th...lets see how difficult it is for them to coordinate that !!

Comparing to epi the xeloda have been OK, get rather achy ankle knee and back joints later at night, very slight nausea, and feeling tired as days go on but cannot sleep at night then lay awake trying desperately not to have dark thoughts... 😞 on the typical for me constipation and very sore bum road (sorry if too much information) i do suffer with this and it is awful, makes me feel so down, then this am i have been sick...out the blue, rang trial nurse who said could be one off, hopefully so. Hands and feet have been OK apart from both big toes have darkening patch under nail in both bottom right corners...anyone know what this may be by any chance??

Do the xeloda tablets side effects build up like epi, is this the calm before the storm?? Remember with first epi thinking this is OK and by epi 4 thinking this is bl**dy awful i can't bear it...

I too have not had a period since my first epi. I am 36 but not wanting children so wouldn't be devastated. Can i ask tho rather personal question, i have seen another thread about dryness and pain with penetrative sex, this is the same for me, do i need to ask onc about something i can have?? i so want to make penetrative love with my partner and we just can't....he has been so very understanding and supportive and never mentions it, it is me that brings it up and wants to try to do something about it, don't know why i feel a bit embarrassed about mentioning to onc, but i do. Thanks for listening xx

Good to hear from you Yvonne, glad the epi is over for you now, what is next for you i cannot remember?? I've not seen a nutritionist no, i do know that bc is very rare in asain, african continents but remember my surgeon telling me that noone really knows why but i guess diet may have something to do with it...please try not to feel guilty about what you eat, but i do understand that as we have no control over bc we want to take what we feel is some positive action to have ourselves...take care of yourself xx

Thanks for your kind words Vicky, i was scared !! i have felt a bit guilty eating meat but had chicken last night too, then flipping jamie oliver programme came on that OH wanted to watch about pigs so i hid behind my laptop screen !!! It was a sad programme about piglets that made me turn veggie all those years ago...what a coincidence eh....

How hubby?? Did you get lots of calls??

Anyway, best go and get dressed i suppose as it is 1230pm 🙂
Take care all and hugs xx

P.S. Would it help if i posted on the TACT 2trial thread instead so you don't have to keep repeating yourselves - i could leave a message on this thread for the other ladies if they log in again at some point and want to catch up ??

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Re: Anyone starting chemo around 20th november?

i have just started my chemo on the 23rd january and wondered how you went on with yours my first wasnt to bad felt a bit sickly but very tired how are yougoing on with yours?

Flo62
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Re: Anyone starting chemo around 20th november?

Hi guys,

Blondebird....Scan ok - clear -Thank goodness. Thanks for thinking about me.. Posted on Tact2 Trial, like Vicki

Vicki, I've had several rows like the one you exp with OH about the work/food bit....it's as if we don't do anything. He works and then expects food on table even though I've been at work from 08:30 to 3.30pm with 90 odd children, then back home to my 2 and all their activties. Men - think about dinner and then cook it - hardly! Too much brain activity. Sorry if you have OH who does otherwise. I wish -only VERY jealous. and Blondebird to have a hubby who cooks dinner well...green eyed monster here. However, mine has done a few dinners over the past 2months but I think he realised he should as wasn't too well at times. Given umpteen amounts of praise so long may it continue... May not hold my breath for too long.

Blonde bird - Stress or what re your tooth. I thought we should try not to be stressed. Your hospital not doing too much on this front. I think I would have burst into tears. Gonna pray for you tonight to get it sorted.

Re the periods...I had a huge period that lasted about 10 days on my first Epi - certainly hadn't expected it but then again I had been on Marina coil for a number of years and that gives you very scant periods, so it was a shock... and then I had it again on my 2nd but not quite so long and I've had nothing since. Had an odd 'discharge' at end of this chemo but that's all...so far. Have to wait and see if periods resume. Knowing my bl**dy luck they'll come back. My periods resumed with gusto 6 wks after my 1st child and I was breast feeding! My sister in law has hardly had anything whilst feeding her brood. So expect them to return...will just be my luck.

Off to bed nearly 1am...hugs to all

Fiona x

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Hi everyone
Not posted on this thread for a little while. Seems to have been quite a lot going on just been trying to catch up. Ive heard about periods coinciding with those around you but never virtual ones but snap with Vicky. I was starting to hope they had dissapeared now back with a vengance. Ive had my 4th epi now and was sure they would have stopped. All my bones still ache though.

Ive been reading through the chats on food in the thread and Ive changed my diet quite a bit. I think I may need to see a nutritionist though as I think Im starting to miss vital parts of food groups- its hard to know what to substitute things with (have any of you seen a nutritionist?). I read a wee while ago about 1 in 10,000 women in china getting bc compared to 1 in 10 in britain/america and the thoughts about dairy and now I find it really hard to eat it and so guilty when I do (my partner who is a doctor thinks Im nuts- very reassuring!!- not helping). Maybe its a bit late now worrying about this but I cant help it- I think Iv e got too much time on my hands right now. Anyhow thats probably another discussion altogether.

hope everyones doing ok
Yvonne x

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oh

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Hi ladies,
how are you all? Thank you both so much for your kind words and advice / information.
Hope you are feeling a little better Vicky?? I think my OH would've been wearing the beef stew but unlikely to ever happen as i do not do cooking and he does it all !! Why not just do sausage and mash every day !!! Have you spoken to work about going back in / seeing occ health?? Good luck with that, know what you mean about brain stimulation, but do wonder whether i would cope as any intelligent conversation i seem to have i feel real queasy after a while of concentration...weird.
How are you Fiona?? Was it yesterday that you were getting scan results? Really hoping for positive news xx

Well, cannot believe what happened yesterday. Went in to hosp to have tooth out 5pm al gowned up, anaethetist saw me, pre op all done, to be told at 6.30pm that no one could get access to my notes (apparently locked away in legal department (no idea why - anyone???) and surgeon not prepared to take toot out without them...i offered to sign something but not having it. Then asked to wait while they tried to get hold of a manager, told by nurse it would be in "my best interest to wait" which we did till 7.40pm when no manager had appeared and notes still locked away and surgeon still not doing tooth.....what a flipping nightmare cannot believe this all this palava going on for a few weeks over a bleedin tooth. Spoke to bcn today who has said it should now be done in my week off xeloda which is next week and she has spoken to surgeon. Well lets wait and see....

Eyelashes still disappearing...still feeling really upset about it, i like your beech hedge Fiona, and i can see little spikes where eyelashes have gone so hope they grow super quick..got a gross furry tongue today too, read on this site about pineapple juice - have any of you tried this ??

On way home from hosp last night and with everything that has gone on since dx in sept i thought sod it....and i had a mcdonalds cheeseburger...i have been vegetarian for about 13 years due to animal welfare reasons....and it was bloody lovely 🙂 i think i may be eating meat again !!!

Take care all and thanks again xx

Flo62
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Re: Anyone starting chemo around 20th november?

Oh Vicki, just read your thread - Next week can't come quickly enough so can give you hug and an ear to rant to. Been there. Have awfully big t-shirt re hubby stakes.....solicitors earlier this year before the BC hit me!!

Sending you big virtual hugs. Off to bed now - 12.20am.... too much tea kept me awake most of the evening.NO doubt will spend half the night waking up to go to the loo!

Love Fiona x

Off to Liverpool tomoz otherwise would have phoned you. Will prob txt u. Try to keep chin up, I'm here for you all the way hun.

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oh

Flo62
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Re: Anyone starting chemo around 20th november?

Hi Blonde Bird...

Scan was okay not as traumatic as thought it may be considering I was going to radioactive! Hardest bit was veins collapsing so had to use back of hand AGAIN - OUCH... Was pretty worried and almost kept bursting into tears - just with the thought of things so the Chemo nurse got my ONC to speak to me. He was reassuring and told me to book in to clinic this Monday to get results. I'm sure the stress levels will be high whilst waiting in waiting room...

Glad your tooth is being sorted out and you won't be too sore, Am or pm?

Re the Hair loss...

Happened to me too. I actually lost my eyebrows 2 days before Christmas and my eyelashes were pretty thin too- my last epi was 3rd Oct and I was on 2nd cycle of xeloda, but everything seemed to happen all of a sudden but hair started to grow back quickly. I likened it to a beech hedge. Leaves stay on until new growth starts and then the leaves drop.

On my first round of Xeloda, I was very nauseus in the evenings and had gripy stomach pains which had me doubled over at one point, plus my hands went v v sore and cracked...but ONC reduced dosage and have been okay since. Minor SE's in comparison. Bit more niggly now and feeling more sick and bl**dy kna**kered, but this is nearing the end so expected cumulative effect to get worse..
I finish last tablet Monday evening- yippee....14 tabs a day gets monotonous but I'm not going to complain. It IS easier than IV.

Hair is growing well on head - came back really dark (like when was kid) but I'm very grey as well though....looking weird with black and grey hair. One of my good friends likened me to severe lefty and hippyish plus social worker!! Might go and buy floaty skirts and sandals..HA

Bonne Chance for Monday. Will be thinking of you.
Fiona

ps Snottraggs and I are meeting up for coffee next week. Anybody else in South Manchester?

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Re: Anyone starting chemo around 20th november?

Just bumping this up to see if anyone is around....xx

Having my tooth out on Monday - sorted at last thank goodness....seem to be getting very tired yesterday and today perhaps the xeloda and was retching earlier but wasn't actually sick. Bald patches are appearing on my eyelashes which i have found really quite upsetting more than my bald head, i thought that i am over epi and now on xeloda that this would not happen....anyone know?

Hope you are all keeping well xx

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Re: Anyone starting chemo around 20th november?

Hi everyone,
How are we all?

Jill - long time no hear hoping everything is OK with you ??

How was the scan Fiona - how long do you have to wait for any results?

How are you Mandy, still improving hopefully..have you been able to do some more painting??

Started my xeloda tablets last night, taking 2000mg twice a day, fingers toes and everything else crossed they'll be OK for me. Saw onc on Monday who went to sort out my tooth extraction while i was there, came back told me would be done the next day, i went down to the clinic only to be told that it wouldnt be tuesdy but possibly wed or fri - well not today and not had call about fri yet.....doing my head in..

take care all
love n hugs xx

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wow

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Re: Anyone starting chemo around 20th november?

Hi Fiona,
Yep, got appointment with onc and trials nurse on Monday to start xeloda. Very much hoping that it will be less harsh to me than the epi, fingers crossed and all that !! Good to hear you mention that they can reduce the dose if we suffer badly. How long have you got left on them?

Hi Mandy,
Flipping heck, never rains but pours eh, I have been feeling the same with issues with a wisdom tooth mentioned earlier on this thread. Know what you mean about TV, sometimes wonder what we pay our licence for 🙂 I've not really got any hobbies (we own a 1960 VW Campervan and go all over the UK and abroad in her but obviously it isn't the time of year and i am not capable at the mo to do that) so i've been lining the pockets of Blockbuster and love film !! Like you I have been trying to do ironing and cleaning while i can as my partner has waited on me hand and foot and the least i can do is help him when i can, he has been truly amazing and when i read some of the posts on here about less sympathetic other halfs i again realise how blessed i am. Thank you Pete xx

Hope your neck continues to improve. When does Tax start ?? Is that 4 too ?
Well done for going back to work and great to hear that they are being supportive, and makes such a difference.

Well my wisdom tooth problem has not gone away. Basically the hosp dentist are not processing my urgent referral for extraction despite calls from onc and bcn. Onc has said cannot delay starting xeloda any longer so leave the tooth til it starts to bother me. I haven't pain at the mo, although dentist said very close to nerve and needs to come out BEFORE abcess or pain. Personally thought it was about prevention better than cure, can understand onc wanting to get on with xeloda and of course i do, am panicking as 2 week overdue now. But surely as at same hosptial the bc team could insist to hosp dentist that they have to fit me in. Am i expecting too much, with all we go through why should an abcess form or i suffer pain before they ACT ? I am slighly frustrated as you may tell, sorry to go on.

Well hope you all have a good a weekend as you can, take lots of care
xxxx

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Hi everyone.. havn't been online, been asking myself each morning can anything else happen? yet again!!! FEC last and final No 3 has been and gone... I was violently sick for 48 hours however it was just 48 hours and I didn't feel too bad afterwards, not my usual 7 day marathon! But its was the last one so I can't wait to see hat Tax has to offer. My arm doesn't hurt as much now, Doc says its probably my veins hardening, the swollen ankles have gone down BUT..... before FEC 3, I did something to my neck, , probably the result of constantly being aware that I have a hick line, which by the way moves when I lay in certain positions making it a tad uncomfortable. Tried to get a massage but coz I'm on Chemo they were not insured to help me.This pain in my neck eased off, but after being sick lots I triggered it off again with a vengeance. Went to my GP as I have had this pain for 2 weeks and she said it was almost like whiplash and to rub ibruprofen gel in and wear hot wraps. This today is finally letting up. Yesterday I thought I had cystitus, but this only lasted a day - very odd. So today has been a pretty good day so I got my easel out and painted a picture to help me relax, couldn't bare another day infront of the TV!
On a positive note though, before my last chemo I went back to work! and plan to go in again next week, just doing mornings at the mo and can basically pick and choose when I go in... its not so much to do work, but they understand I need to go in for my sanity and are letting me please myself which is good. I have to be careful as I work in a prison (I'm a PA) so I'm trying to avoid any prisoner contact but thats not too difficult to do.
Need to try and fit in my household chores too now i'm almost back to being myself, my boyfriend is doing his best and I am grateful for everything he has done and is doing for me, but some things you just have to do yourself!!!
Hope you are getting over you treatments as well as you can. Stay well. Mands xxxxx

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Re: Anyone starting chemo around 20th november?

Hi Blonde bird...

Epi 3 + 4 floored me too. Epi 3 I hardly recovered when next one was due... Xeloda been okay and so much easier to cope with than the epi. I had hard time first time round as hands has already started to show signs of Hand Foot syndrome (sore, red, felt on fire, cracked finger tips etc)...so was given B6 tabs 3/24 and seemed to help a bit but by the end of the 2 weeks onthe tabs I could hardly hold a cup of tea and couldn't go near any hot water. so the Onc reduced the dose - was on 2300 ( 4 x 500 tabs and 2 x 150 tabs) and have been on 1800 (1 x 500 tab less) ever since and things ok. Tiredness seems to be the hardest thing to cope with and it has just become worse the more chemo enters the body but then the BCN told me that from day one. I just listen to my body and go and sleep. I tend to whizz around am and get dinner done etc and then crash. Family seem to have become used to this scenario and the children are good when they come in from school and just leave me to wake up at about 4 ish.

So are you just about to get Xeloda?

Fiona x

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I got the same arm of the trial as you too. Must say that epi 3 & 4 really knocked me for six but also the relieve that epi is out the way forever in such a quick time period. Just hoping that xeloda will be better for me, the nausea and just general feeling poorly really got me down. Spent all of xmas and new year on sofa 😞

Thanks for the well wishes, they are returned, i do feel so very much genuine empathy, concern, heartfelt best wishes for everyone on this forum that noone wants to be on, people i haven't even met.

A very dear friend and wonderful lady i work with was also dx with bc on 8th Jan. We unfortuntately live about 200 miles apart (meet in London to work) so cannot see each other often but can speak on the phone and share our thoughts that each other "get" without the need to explain.

Take care xx

Flo62
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Re: Anyone starting chemo around 20th november?

Hello Blondebird

I'm on the last leg of Xeloda tabs and boy am I glad... It sort of becomes a way of life and the end seems such a long time away when you first start. Fatigue has really hit this time and only on day 2 of 14 day cycle. I've spent the last 2 afternoons sleeping, which is so unlike me.. I started back in Sept and opted for the trial and with a few prayers was given arm 4 of TACT2. However it hasn't been without it's ups and downs and this 3 weekly cycle seems easier than the 2 week cycle. Anyhow, light at end of tunnel and wishing you all well on the next few months. I get to see Snottrags at hospital, and it's been great actually meeting someone with bc and seeing them 2 x now... spent 4 months not knowing anyone at the hospital. This forum has been a godsend, and have become virtual buddies with some girlies.

threads that I tend to frequent are the TACT2 or TACT etc on this discussion but will of course check this one out too.
Fiona

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Hi All,
Know what you mean about managing just the one wine Vicky, i was able to drink some people under the table, since last drink was 4 lagers on my birthday 21st Nov. Cannot bear the thought of wine, how wierd, hope it comes back 🙂 Glad to hear that your 3rd epi has been the best yet, we deserve some "good" times when we can don't we.

Hi Fiona welcome to the thread, how far are you into your treatment? All the best for week Monday and your bone scan xx

No update on dentist really, the surgery have said they are not prepared to do the extraction at their surgery due to my "health condition" so am waiting to hear from dentist at hospital who requested yesterday that they needed to speak to my onc. BCN is sounding rather concerned that my xeloda chemo has been delayed with all this and i am panicking a bit and getting cross with myself for not just being brave in the first instant and having it out at dentist surgery when this seemed to be an option - it would all be over now rather than hanging over me and causing me sleepless nights 😞

How are you Jill, beaten the blues from epi no 4 yet, do hope so, let us know xx

Mandy 2310 hoping everything is OK with you too as it's been a while xx

Take care all xx

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Hi

Flo62
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Re: Anyone starting chemo around 20th november?

Hi Vicky, Fiona Here...found your thread.
Glad to hear your 3rd Epi ok. You deserve a break! It was good to have our long chat and to meet your mum in law on Monday. Going to have bone scan on Monday next, mainly because arm been very sore and pain has radiated up into shoulder and neck. Dr C believes it's phlebitis (vein inflammation) and given me some gel to rub on arm etc... but because I was so upset meeting someone whose C came back after similar diagnosis etc., I was 'freaked' a bit and having scan to be certain. No hesitation from Dr C - he does seem to have the emotional aspect covered. Makes a change from other docs who tend to say oh it's nothing.

Like I said, if you fancy a cuppa etc give me a ring. See you on 2nd Feb if not before.

Fiona

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