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May 2017 chemo starters

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Re: May 2017 chemo starters

And you too Jay x
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Re: May 2017 chemo starters

Treehouse - my onc has told my chemo buddy who's 6 weeks ahead of me - to expect herceptin to make you feel more achey and tired the longer you're on it! I'm seeing the onc tomorrow and I do have a list of questions!
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Re: May 2017 chemo starters

Wow andi you are doing really well with your steps! I'm keeping up with my couch to 5k. I'm week 5 now so getting tougher!

Wolfee i am completely with you. It's my diagnosis anniversary tomorrow and my first mammogram. Feel sick to the stomach. Really not ready to re live the past year. Just glad boys are off to keep me busy. Good luck will be thinking of you xx
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Re: May 2017 chemo starters

Hi Mai - sorry to hear the hot flashes have reappeared - I still suffer too -mix between hot and cold flashes - don't seem quite so often as previously but I do get them now during the day as well as night!

Well done on your freak out Friday lunches - enjoy! x
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Re: May 2017 chemo starters

Hi Wolfee - SNAP!  I too have onc app tomorrow - mines 12.40 when's yours?  Mine is a follow up on rads combined with 3 monthly check to see how herceptin is going!  I had results from latest bloods when I went for herceptin last Thurs and when I compared them to before treatment readings they look pretty much the same - something must be working! 

 

I've never had an MRI - I was diagnosed with ultrasound, mammogram, CT and bone scans and of course the dreaded biopsies!!!

 

I found my lump a year ago this week - I remember is vividly (half term and my son had a friend staying over)! - Ergh makes me feel cold at the thought of it all!

 

Am I the only one who dreads going to see the onc - in case they suggest chemo again?! 

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Re: May 2017 chemo starters

Mai - what complimentary therapy are you having? Know what you mean about 🔥☄️versus ❄️🌬! I’ve discovered one week into Tamoxifen that I feel nauseas in the mornings, so I’m drinking ginger with honey and seems to be doing a good job. At Christmas time I discovered T2 a tea shop and bought a funky teapot designed for loose teas and found this pure ginger that’s lovely. Have a good working week x
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Re: May 2017 chemo starters

WolfEE - Nice to see you haven’t completely dropped off the radar 👋😃
I’m not surprised your feeling nervous about oncology appointment, something unfortunately we all have to go through again and again. We are the lucky ones really, there are people walking around out there symptom free and totally unaware they have cancer. We all have good teams who have fought hard on our part to get us cancer free. I feel thankful and lucky for every appointment I’ll have in the future, but yes nervous! You will be fine.
Have a good time at the hairdressers. I can’t wait to get rid of this grey!
Managed to walk 18.4km in my first Fitbit week, one of those walks was to the pub for a roast dinner with the family, it was lovely. Take care x
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Re: May 2017 chemo starters

Eek mammogram boob squish. I won’t be needing those again. I did ask the surgeon if I am allowed mri due to wires in ribs. Apparently yes?!??
I know what you mean we are reaching the anniversary stage. Feels strange. Great we have got this far but you realise how long we have been on this roller coaster.

Mai great that you are enjoying work and normality. I love the naughty Friday. Definitely keep it up.x
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Re: May 2017 chemo starters

Oncologist app tomorrow. It’s been weeks and weeks since I’ve been at the hospital.
In March it will be a year since my MRI scan that discovered this nightmare. I’m supposed to be on a yearly check because of family history and because I’ve not yet had my other side removed until my reconstruction time that means over the next few weeks I’m due my yearly mri on my natural side!!
This dawned on me in bed last night and now it’s all I can think about going back in that tunnel a year later like starting all over again!!!
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Re: May 2017 chemo starters

Andi my hair colour booked in 23rd Feb
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Re: May 2017 chemo starters

😘 hello all 👋
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Re: May 2017 chemo starters

Glad you are all doing well ladies. I've only been back on the Tamoxifen a few days (I had to suspend this for the clinical trial) and the hot flashes have started. I'm back and forth between feeling like a fridge or a radiator! I have my complimentary therapies starting on Tuesday for the next 4 Tuesday's. Quite excited about that!  I'm enjoying being back at work and a few of us went for lunch together on Friday so I've officially named it "freak out Friday", hopefully it will be a thing!  Xx

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Re: May 2017 chemo starters

It’s interesting that we all have some side effects from herceptin injections but my onc seems to think there are none!!!
Not helpful. Hope you perk up soon Andi and get your steps in 🚶‍♀️.Yes it is always the hot flushes that wake me up.
Tatyana sounds like you are keeping busy 👍💪🏻 I think I am ready to brave more visitors.
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Re: May 2017 chemo starters

Treehouse - How lovely to have that freedom and independence!!!!! Sooooo jealous 😂😂😂

There’s no stopping you now! 🚗..............................................................................................

 I can officially drive on the 20th February.

 

Trrehouse the Forest of Dean is beautiful 😃 Are you going to get any cycling in?! 

 

Saw my hairdresser this morning and got myself booked in for a colour on 24th Feb!!!  I’m so excited!! I feel once I’ve lost the grey that my confidence will definitely be back. I’ve had her particular hair dye brand before so hopefully all will be ok. It’ll be 4 months since last chemo.

 

So the old Fitbit ... was doing really well, then had Herceptin jab and I literally didn’t reach 800 steps! 😕 I felt really wiped out.  Good news through is that I slept for 8.5 hours with only 2 wake ups.  My flushes too don’t seem so overpowering, not sure why this is?! On day 4 of Tamoxifen so I’m expecting the hot flushes to come back with a vengeance.

 

Hoping everyone has a great weekend 💕

 

 

 

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Re: May 2017 chemo starters

Andi, the way I do it is to find the youtube link, copy the address, and then just paste it into my post on here. I'm afraid if you need a better explanation than that, we'll have to hope someone else can help -- I'm pretty much at the stage of pushing buttons at random and hoping it works!!

 

Treehouse, the holiday really did me good, and hubby too. It was quite emotional at times, but it did help a bit with sorting the brain out. Coming back to the "real world" was a shock, but I know I can't stay on holiday forever, much as I'd like to. What's more, we had fab weather in Greece, but now they are having really bad storms, so it's good that we came home when we did!

 

I've got an appointment with a counsellor on Wednesday, thanks to my lovely GP, so I'm hoping that will help. Meanwhile, we're meeting my stepson and granddaughter for breakfast tomorrow, and seeing some friends on Tuesday, and I'm lunching with a group of old friends on Wednesday, so there's lots of good stuff going on.  I've started taking the magic pills (well I certainly hope they are magic!) and no noticeable SEs so far, but it's early days so I'm being cautious.

 

Have a good weekend everyone, I hope it's less cold & miserable where you are than it is down here in Oxfordshire!

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Re: May 2017 chemo starters

Tatyana - 😂 made me chuckle!!

 

By the way, daft question... how do you attach the YouTube links on here?! 🤔😃

 

Hope your enjoying your weekend xx

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Re: May 2017 chemo starters

😂🚗 thanks tatyana love a bit of Freddie!!
How are you feeling now you are back?
I think holidays are so important to us all now. We booked a night in the Forest of Dean next weekend. And are taking the 2 smaller kids on a road trip tbc as the big 2 are skiing with school in half term.

Completely understand why heather is upset with work.
Andi you are awesome at the moment. Keep going.
So many scans and drugs with you guys, I feel I have dropped off the radar a bit. Still waiting for herceptin appointment. Not had a bone scan 😕
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Re: May 2017 chemo starters

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Re: May 2017 chemo starters

Hi all hope you are all well.
I have news.
Managed to drive today. First time since Oct 11th
Whoop whoop 😂💪🏻👍💃 🚗 🚘 🚙
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Re: May 2017 chemo starters

Mai, no I don't understand how they decide! I was so relieved at the time of diagnosis when I got my CT and bone scans back and they were clear - I almost burst into tears when the onc told me!

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Re: May 2017 chemo starters

Hi Rosie - it was lovely to see you today and looking so well too.  I bet it was quiet when we left - we're always the same every 3 weeks!  Going to miss our meet ups once herceptin is finished - it turns into a social party every time!

 

I'm pleased you can carry on swimming whilst on the new pills.  Enjoy the meal and wine tomorrow and hopefully all goes well when you start them on Saturday.  Funnily enough as I was leaving the hospital I bumped into an old school friend - I haven't seen in ages but we chat occassionally on facebook! - anyhow, she suffers from crohns disease and is having a bad time at the moment but strangely enough she was saying she takes chemo pills as part of her treatment for it.

 

Take care and keep us informed of how it goes with the new pills. xx

 

 

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Re: May 2017 chemo starters

Tatanya your hotel sounds lovely xxx jay good luck with the pip claim mines in just waiting with baited breath!!!
Treehouse im pleased to hear heart app went well x
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Re: May 2017 chemo starters

Tatyana - your night in the posh hotel sounds lovely, a nice end to your holiday. Chemo nurse said swimming is fine as long as you go when it’s not too busy. She checked with another nurse as well to make sure.

 

I have 4 tablets to take in the morning and 4 in the evening, they are worryingly similar to my daughter’s epilepsy tablets so I think I’ll have to keep them in my bedroom! I’m going to have a nice meal tomorrow and a couple of glasses of wine and start them on Saturday.

 

Jay - it was lovely to see you today and meet your friend, Jackie. It was very quiet in there after you’d all left!!

 

Andi - glad to hear that the tummy is looking good, it makes it all worthwhile and such a relief to get out of the tight underwear. My shoulder is better now and I’ve started the exercises again but being very careful not to overdo it this time.

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Re: May 2017 chemo starters

Hi Mai re your bone scan, im having one on 20th this month haven't had one when diagnosed i feel a little bit silly in a way as i have been suffering with chronic hip pain since the last chemo been keeping me awake si i rang onc secretary to ask advice was it chemo related or should i mention it to my rheumatology doc, she rsng me last week and i had to see onc registrar who has decided to give me a bone scan and hip pelvic xray!! I think its probably more arthritis problems starting as my whole body is now hurting!!! Think my onc might be a bit miffed about it when he gets back from his hols as he said i wasn't to have any scans eek 😨🤔 i see him on 12th March will be an awkward meeting i think 😨
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Re: May 2017 chemo starters

Jay, I'm pleased to be on the trial for the extra monitoring. I hadn't had a bone scan before. I wonder how the NHS  decides who gets a bone scan and who doesn't?  I'm sure if I read the NICE guidelines it will all make sense. At least I know my bones are good now so I won't worry about being fragile.

 

Tatyana, glad you had a wonderful holiday and a last night in a lovely hotel. 

 

Andi, of course you are special! 😘

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Re: May 2017 chemo starters

Rosie, did you enjoy your swim? We're back in the UK now, but last night we were in a swanky hotel in athens for a special treat for our last night, and had a fab swim in the hotel pool, had it to myself! I'm also unclear about swimming on Cape, no clear advice,so I'd be interested to hear what advice you get.
Bloods first thing tomorrow, and then start the magic pills. Five after breakfast and five after dinner. Yum. Somehow I was having more fun in Greece!
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Re: May 2017 chemo starters

Mai, great news about your bones and neuts! Greek dancing available anytime ladies, just ask!

Treehouse you are doing so well, I'm proud of you! I could hug your surgeon. I hope the exercise is fun!
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Re: May 2017 chemo starters

I'm just off Andi - we always have a laugh as one of the nurses on the unit causes a sting and guess what - I usually get her!!!  

 

Dentist 2 booked for Friday 9 March - 1.5 hour appointment!!!!!!!!  Don't think I'll tell my boy that bit!!

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Re: May 2017 chemo starters

My day -
Herceptin jab -
Tamoxifen taken -
Cinema booked to see Early Man with
The kids on 14 Feb (birthday 47)

Chocs, mags, fruit, flowers bought to
Drop round at a friends in a bit. (She has ovarian cancer. 3 chemos, 1 operation done now recovering before 3 more chemo)

Walk ...... 🏃🏽‍♀️🏃🏽‍♀️🏃🏽‍♀️🏃🏽‍♀️ 🆘 ... to friends house

Prepare tea (homemade chicken pie 😋)

That’s it 😁
Have a good day ladies!! 💕💕💕 xx
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Re: May 2017 chemo starters

Mai -
Yes lovey I’m Triple Positive! ... does that make me special?! 😉😂
It’s good to hear your bone scan was all good, very reassuring. You made the trial!! Because your on it you’ll be monitored so well 👍 And now that bits done with hopefully you’ll get a bit more sleep.
Big hugs lady
xx
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Re: May 2017 chemo starters

Morning Jay,
Wishing you well for today’s Herceptin jab 💃🏻💃🏻
Unfortunately mine was a stinger! 😬😫 but I obviously survived 😉 waiting for the old nose to start streaming.
Good luck with the dentist round 2!
xx
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Re: May 2017 chemo starters

Rosie you sound like you have a fab day ahead with swimming and lunch with friends! Enjoy!
The ‘big girl pants’ are hit and miss with me 😂 I’ve probably worn them 3 days out of 7 😬 My tummy looks good so I’m not stressing over it. Also I stopped wearing my bra at night about 10 days ago, so liberating! 😂 Apart from your shoulder how are you getting on?
xx
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Re: May 2017 chemo starters

Hi Rosie - enjoy that swim and lunch with friends and see you this afternoon - I'm guaranteed to be there when you arrive for your appointment!  Mine is 2.30 but honestly I've never been in on time yet!!!!  It's usually about an hour although things have improved a little since Christmas and it's been half hour! 

 

This afternoon is a big social meet up for me - as the lady I made friends with, Jacqui from the ward at East Surrey, is also going for herceptin today (2.15 is her appointment) - we see each other every 3 weeks but always got so much to catch up on....!!  - so really looking forward to catching up with both of you!  Hubby's going to feel a bit rejected today!!

 

Hope all goes well for you and await hearing how you feel on the new tablets.  x

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Re: May 2017 chemo starters

Treehouse - glad to hear that your heart check up went well and that he doesn’t need to see you again. That’s great news. You still have lots of time before your holiday to recover and I’m sure you’ll be on those rides!

 

Mai - fantastic news that you’ve sneaked on the trial and that your bone scan was clear. It was worth applying for it just to get the bone scan!

 

Hope your cold and oral thrush has cleared up Andi and you’re still making progress after your op, are you still wearing the “hold it all in” underwear or have you dispensed with that now.

 

Well off for a swim now as I’m not sure I’ll be able to once I’m on Cape. Then lunch with friends and straight off to the hospital to pick up tablets. Hopefully see you there Jay.

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Re: May 2017 chemo starters

Mai - fantastic news that your bone scan was clear - I had one before chemo - have you had one before? Also good news that your neutrophils have increased.

Although you've been placed in a non-drug group, it does mean that they are monitoring you more - just a gentle reassurance that keeps us feeling safe.

Herceptin day for me tomorrow - I'm hoping it has the usual affect on my nose as it's still congested at the mo!!

Son's root treatment didn't fully go ahead today - slight problem was discovered once numbed and starting to remove current root filling - the root treatment specialist who's doing the job, needs to look at tooth under microscope! - got to wait for a new appointment.. ergh!!! We all left feeling totally deflated and frustrated!
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Re: May 2017 chemo starters

Good evening ladies, wow, my working day is a long day!  This is my relax time after eating tea - not much evening left!  I had my appointment today for the trial. My neutrophils have gone up to 1.6 so just scraped through the entry criteria. I think it was Tatyanas Greek dancing with ouzo that tipped the balance! 😂 My bone scan was clear thank goodness. I haven't slept very well for the last few nights as my mind has been on overdrive since having a scan. I was afraid to hope for something good.  Thats what this disease does to us all.  I've been random selected into the non-drug group so just monitoring and back on my Tamoxifen only. Not too bothered as I found out the trial drug affects neutrophils and I've more than my fair share of problems with those little blighters!

 

Andi, I didn't realise triple positive was a type, is it more rare?

 

Glad many of you are moving forward well, focussing on getting fitter and enjoying life again. It's so lovely read.  We've come a long way........

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Re: May 2017 chemo starters

Jay when i made my pip claim I could have sworn it was a robot to 😂😂.  He asked me a question and me having chemo brain at the time didnt give the right answer and he just kept asking the question over and over until I gave the right answe it was something like which country were you birth  and I said Great Britain, then England and the correct answer was United Kingdom I was nearly howling when he just kept repeating over and over.  Good luck and like you say if you don't ask you don't get but remember to use your worse day when completing. 

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Re: May 2017 chemo starters

Jay absolutely. Gives them more targeted weapons to whack it with🤜
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Re: May 2017 chemo starters

Treehouse - glad to hear your assessment went well. Yes I was ER+ and HER2+ ... but apparently oncology say it’s not a bad thing and quite positive! 🤔😃 xx
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Re: May 2017 chemo starters

So cardiac rehab assessment.
I spent over an hour discussing my cancer and surgerys and how crap my shoulders are. I will get 8 weeks of exercise classes starting in a week or so. I should be good as new when I'm done 👍🤜
Did not need to wear my trainers after all. 😜
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Re: May 2017 chemo starters

Following the on-going aches and pains etc, I've given in and just made my PIP claim call!  - The lady on the phone (sounded just like a robot) - I wonder if she is?!  I wonder what this will bring - as my Dad says - you don't know unless you enquire - nothing lost, nothing gained...!  x

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Re: May 2017 chemo starters

Thanks Andi 😘👍
Good luck with tamoxifen and herceptin. You got it all going on!!
So are/ were you ER+ And HER 2+ ?
Sorry I am rubbish at remembering everyone.
X
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Re: May 2017 chemo starters

Mai -

 

How are you doing lady?  You had bloods yesterday ..... 💕

xx

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Re: May 2017 chemo starters

Rosie -

Sorry to hear your shoulders been hurt through going at it in the gym.  Hopefully gentle stretches will ease it a bit.  I’ve got proper what I call ‘man weights’ at home and I’m avoiding them for the next couple of months then will start with very few reps on the smallest weights.  I’m very happy with the walking.  My neighbour doesn’t work on Mondays and Tuesdays so we are going to hook up and do mini walks to start with once a week and treat ourselves to a coffee on route back home.

Enjoy your meet up tomorrow with Jay in hospital 

xx

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Re: May 2017 chemo starters

Today I start Tamoxifen 😒😣😩😞 

 

Tomorrow I have Herceptin jab number 4 

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Re: May 2017 chemo starters

Mishy -

Wishing you all the very best lovey for today’s meeting.  I think crying is to be expected after everything you’ve gone through and continue to go through so don’t hold back.  I think the councillor will be very worried if she doesn’t see you she’s a tear.

Ive got a moving on course starting 18th April for 6weeks.  Trying not to think about it at the mo.

Great news about your hair growing well.  Must admit every morning I’m straight to the mirror to see if some blooming miracle has happened in the night and that I’ve been gifted another inch of locks.  Hasten to add that’s not happened yet.  A nurse at my GP practice said I should keep it grey..... um I don’t think so!! 😁

Big hugs

xx

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Re: May 2017 chemo starters

Treehouse -

well that meeting with your surgeon couldn’t have gone any better!!!!! It’s good news all round and you must be feeling so much happier and confiedent 😄😄😄

 

Well done on your massive 9,000 steps!! That’s got to be a good 4 miles if not more!

I love my new FitBit, it’s really motivating me to get moving.  Managed 8,000 steps yesterday but won’t be doing that again today 😁 

 

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Re: May 2017 chemo starters

😂😂😂😂😂eyew!
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Re: May 2017 chemo starters

Treehouse, that is good news, hopefully your valves heal quickly!

I guess you mean it doesn't specify what you should wear.... as I read that as "you don't wear anything....!!" - ergh can you imagine the sights! I'd opt for leggings or something similar and a baggy top. - Enjoy the experience! x
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Re: May 2017 chemo starters

Hi Jay I think it goes down a bit as the valve repair heals over and is less rough ( as this is where the bugs can grow)
Ok so I am off to hospital for exercise assessment what do I wear? It doesn’t say anything in the letter.
I am not a sports gear kind of girl😬