May 2017 chemo starters

[treehouse]

Hope everyone is doing ok. Got smallest boy back from boys brigade camp with the starting of trench foot lol. 😜
Running him a bath. Dread to think what it will look like when he gets out.

[Trisha69]

Hope you all had a good day! I'm still in hospital but managing eat and drink. Bum still not under control. Had a lovely Radox bath and now with a heat pad in bed with a film. Here's to a decent sleep. Night all x

[Trisha69]

My daughter headed back tu Suerey. Think it scared her she said I looked ill x

[misyangel]

Oh Trisha so sorry you are back in hospital again, hope you start to feel better soon.

[WolfEE]

Trisha69, gosh that's awful for you having 2 go back and at 4am. I hope they can get the cramps under control for you. Hang in there Trish I know it doesn't feel like it right now but this phase will pass and you will be feeling better soon.
I'll be thinking of you today and wishing u speedy recovery xxxx

[treehouse]

Oh no!!
This is not fair. Is your daughter with you? She must be really worried.
Glad you are being looked after. I hope they get you sorted this time. You must be so fed up.
Remember you are a warrior.
Hugs x 💪🏻❤️

[Trisha69]

Thanks for asking Tree house. Back on ward at 4 am this morning. Vomiting diarroeah pain sweats low temp feeling yuk x

[treehouse]

Enjoy your day 🌧☔️⛈💦💧 here 😕.
How you doing trish and Kala?

[misyangel]

Mai7 thanks for the info,  I am glad they are doing ultrasound as hopefully they can look at the original lump as she was saying yesterday that it hadn't shrunk and I thought maybe it should have done after 4 fec.

Wolfee I was hoping to have lumpectmy but if this other lump is cancer I think it may be mastecomy as the other lump is further down from first one.  I am feeling ok about it all again today I think as glad it is being looked at by ultrasound. Plus I have extra bonsu week of feeling better I am ever going to have a couple of beers today.  Sun is shining what more can you ask for got to make the most of it. 

[WolfEE]

Sorry I found it about two weeks in2 treatment. I have never been able 2 feel it find my original lump. My oncologist can feel it but for some reason I've never been able 2 feel it.

[WolfEE]

Misyangel, so sorry you have found another lump. I also had a new lump appear about 3 weeks in2 my chemo. The oncologist arranged for an ultrasound but said it was 2 early so I had 2 wait until a week after my second chemo. On the ultra sound it didn't appear as cancer however no biopsy has been taken. She said if at the end no change on the new lump but is change on the original then proof again that it isn't!! For me as I plan 2 have full mastectomy it will be removed anyway. But it does still play on my mind that it appeared whilst treatment already started.
Try and not worry it could just be down to changes from the chemo xxxx

[Mai7]

Trisha, glad you're home and have your daughter with you. Puking not nice for you. Big hugs. Xx

MisyAngel, sorry to hear you've been going through a lot of new anxiety again after discovering another lump and I hope they can investigate that soon for you.   I had my ultrasound scan after my 5th chemo. XX

[treehouse]

Hi misyangel. I found a lump behind my collarbone. My cancer is high up a couple of inches below my collar bone. They think it is a lymph node but don't know if it is affected or just a reaction after the original biopsy. They are keeping an eye on it and may do radiation if it shows up on next scan. They can't biopsy it as it is near important blood vessels 😕. Not sure they can get at it during mastectomy either. Pesky little devil. I get shoulder pain but not sure if it is related or just me sleeping weird as I can't sleep on my front now.

Trish I am glad you have your daughter with you. I hope you get a good sleep and feel better in the morning. Just watch that temperature.
Sending hugs x

[misyangel]

Thanks Treehouse I found the lump myself and it is In the same breast. When you had your new lump was it in same breast and did you find out what it was 

[Trisha69]

Came home because daughter did end up coming. She just arrived.30 mins after me getting home puked violently. Had a nap woke up shivering. Temp 36.1. Taken anti sickness and antibiotics and gonna try eat wih my daughter. She thinks I look Ill. Maybe I should have stayed in 😞

[Jay68]

Hi Treehouse - well done on your 4000 steps! I hope you don't feel so lazy now and I trust you are now resting up! Make the most of these good days until treatment but don't over do it!! J x

[treehouse]

Oh misyangel not good! Sounds like a minion in the office made a mistake. Things like this happen but are not acceptable when this treatment is life saving. Sorry anoint the new lump. Was it picked up on an early scan or did you notice it? Is it in the same boob? I found a new lump about 3 weeks after diagnosis. They could not feel it but it showed up on CT. . They have taken everything I have been concerned about seriously. Try not to worry ( easier said than done I know)

[misyangel]

Well just got back from Oncologist review and when I arrived they said someone made a mistake and she doens't run a clinic on Friday afternoons, I really was not happy as last time I went I had found another lump and the professor who examined told me to mention it at my next appointment if it was still there.  Since last chemo this new lump has been really painful and swollen up, they managed to get the onocolgist understudy to see me who was really good and she has now delayed my treatment next week and said I need to have a ultrasound to see what this other lump is which means my treatment plan could change.  What really disappointed me was the Professor I saw had made no notes in the system about this new lump.

Mai how many treatments have you had before they sent you for scan? 

Heather so glad you are near the finish line.

Trisha sorry to hear you are back in hospital again sending big hugs

[treehouse]

Lol about your explosive warning ⚠️ kala 😂.

Hang in there ladies I am on day 4 bonus time without treatment and feel completely normal again ( other than hot flushes). You will be yourselves again soon.
I have been fun mum again even went bowling this afternoon after the maze this morning.
Keep fighting 💪🏻❤️

[Kala]

Yes Trisha I'm in a side room . It's nice cos you can shut out the chaos going on in the ward . I know how you feel Trisha because with the fec I handled the nausea well but this doxy pig bum is a monkey and actually makes you feel ill ill . I tried so
Hard not to go into hospital fanning myself when my temp spiked but when all your doing for five days is getting out the bed just to use the loo because your in such pain and you don't know whether your coming or going it all gets a bit much. It will pass Trisha . All these lovely ladies are doing and pushing through and so will you . You wanna see me powering down the ward with my iv drip in tow having roughly five seconds to reach the toilet in time shouting get out my way unless you wanna see an explosion 💥 lol.
I'm thankful it gets easier and hoping when I get discharged I manage to get through the next chemo without being re-admitted.
They told me at the hospital it was the right decision to come as with any chemo u need to be on top of the side effects with help. No need to suffer alone and get any help
Available xxxx I'm sorry there's no
One at home for you but I'm sure they won't send you home unless they think your well enough to cope alone xxxxx be strong as your doing well and have come this far xxxx

[treehouse]

Thanks Jay. I managed 4000 steps getting lost in a maize maze 😊.

How you doing Trish. I understand your worry about being at home alone especially as you are so far from the hospital. I know there are days I just want to be looked after. It is hard enough looking after yourself sometimes.
Thinking if you stay 💪🏻 strong. X

[Mai7]

Oh dear Kala, sorry to hear you wound up in hospital and hope they get you sorted out soon. We're all starting to get a bit wobbly these days. I've reached a point where I just assume each new dose is going to hospitalise me as it has the last two times. Xx

Trisha, I know how you feel about feeling safe in hospital but missing home at the same time. It took me a couple of days to adjust to being home again after 5 days in hospital. I think you just get anxiety about being left unmonitored with your own body which you no longer trust to be reliable. Hope you're soon feeling well enough to feel more positive about going home.xx

Raitchr, and you're up and seeing noises in the night! 👀

[Jay68]

Hi Treehouse - yes I'll be having a right mastectomy and complete node removal on the same side - well that's what has been planned up until now - will find out more next Thursday once the surgeon has reviewed my latest scan images. I will indeed be following the exercises set - I'm only 49 and need my right arm for many more years to come!
Don't go overdoing the exercise - you have every right to be lazy at the moment - you're building up valuable strength J x

[treehouse]

Hi Jay
I understand what you mean about limitations I will be having bilateral mastectomy so longer recovery but no need for radiation on right. I know ladies who have had it done and as long as you do your exercises it should be ok.

Kala sorry to hear you have been in hospital. Glad you are on the mend.

Keep fighting ladies you are all awesome. One day at a time x x x
Just found my new phone records my steps. I have not done more than 3000 a day this week. Trying to sort that today.
Getting lazy🚶‍♀️

[Jay68]

Hi Treehouse - I've just one more chemo to go - 24 August - HOORAY!!

Yes I'm having surgery after chemo too - when I got home from chemo yesterday, I was delighted to discover a letter for an appointment with the breast surgeon next Thursday - although I've still got one more chemo to go, I'm delighted things are on track and I'll be free from this monster very soon!! 

Don't panic - 9 days seems a long time but the drugs will still be in your system and chomping away!  It's best to be full strength before next session.

So yours is in the left breast - mines in the right and being right handed I'm already worrying about my limitations - in lots of respects!!  J x

[Jay68]

WolfEE = I'm sorry but this sounds hilarious - but at the same time I feel your horror and embarrassment!! x

[Jay68]

Hi H - me too - I slept a grand total of 2/3 hours and in that time my dreams were absolutely ridiculous!  Roll on proper sleep - I'll no doubt catch up Monday/Tuesday by sleeping during the day!! J 

[Rosie65]

Kala sorry to hear you've been in hospital, how worrying but glad to hear you're on the mend. There seems to be so much to watch out for all the time

trish - glad you might be getting home but understand you're anxiety about being at home and away from the "safety blanket" of hospital. Sounds like it might be a bit quieter at home though!!!

treehouse- I'm sure 9 days won't make any difference at this stage, but the paranoia we feel is always there. I check my lump every day and decide it has grown! I have a benign cyst on the lump so there's no way of checking properly without ultrasound but that doesn't stop me!!

[Rosie65]

I'm having 8 cycles of Carbo/Taxol and am on my 6th cycle, finish mid Sept. Haven't seen surgeon yet but oncologist has referred me to her to discuss options and said they will do it 4 weeks after last chemo.

Mastectomies were agreed at the outset and I wanted them pre chemo, I had been thinking of having them anyway due to family history (my gt grandma bc, my mum and two sisters ovarian, mum's cousin and aunt bc and my sister, but bc got me first. My surgeon argued at MDT meeting for surgery first on my behalf but the team decided that neo adjuvant chemo was the better option to see how the lump responded to treatment.

I got the impression from onc that reconstruction will take place later, I'm not in a rush and just want the breasts removed asap. We have a leading plastic surgery hospital near where I live where they specialise in reconstruction but I think there's a wait for surgery. I'm favouring the "tummy tuck option which my sister had. I'm not overweight and a petite build but have horrible tummy fat since pregnancies!! So would be a bonus

My sister doesn't have to have annual mammograms as she has no breast tissue so doesn't have to deal with that anxiety every year.

[Trisha69]

LOL ! Someone on my ward been 'boodling' all night (as my kids used to call it. Hate the word fart!) X

[Trisha69]

I had mammogram and ultrasoundx

[Trisha69]

Hi Kala glad your sorted! I'm back in hospital too but not sepsis this time. Were uin isolation? I've been feeling rotten after 1st Docetaxel and herceprin and Pertuzam think it's called. Been trying manahe my pain and inconsistent bowels. Diarroeah and constipation. Think home tiday not sure . Had pain at 5am and took just paracetamol and for once it's worked. Been on morphine a lot. Run out of clean knickers and pjs but I actually want to stay. No one at home and am scared to be alone. My daughter was coming and now can't. Gutted x

[Kala]

Morning peeps. Maybe I should have not asked about what certain words meant . Tuesday
I got admitted to hospital
With neutropenia sepsis. Wow there super quick when you get in. I was put straight onto iv vancomycin and gencomycin. My poor tummy was like a ballon and my temp kept spiking up and down but thankfully it's now Friday and my count is up and all good. Had chest X-ray abdominal X-ray stool sample taken to see if I have any infection like cdif in my bowel which app
Is common with chemo drugs . They have given me omeprazole as I'm in pain with indegestion .
Hope your feeling better Trish xxx
Oncology team said everything is back on track and the next doxytaxol will be reduced a little. Hoping to go home today . So so happy to be receiving such good care in here xxxx I will catch up when I get home and see what all you lovely ladies are getting up too xx

[Trisha69]

Gonna breathe in the trees and talk to the seagulls

[Raitchr]

And wide awake thank you steroids, last day today so will catch up on sleep tonight.

H

[Mai7]

Treehouse, I had an ultrasound scan. Glad you had a good day out and try not to worry about the delay. It must be hard, I'd be worrying just the same. X

[treehouse]

Hi all. Trish and Mai great news about scans and shrinkage 😊👍what type of scans did you have?

Katie, Heather, Rosie and Jay are you all in the number 5 club? Glad you are all on track.
Rosie, glad you are coping without the picc line but sorry to hear about your niece, I hope she is getting advice and support.
You say you are also going for bilateral mastectomies have you spoken to surgeon yet? Are you thinking of reconstruction?
Jay I will have surgery after Chemo but I am currently on a 9 day delay because of low bloods.
We took the kids to Wookey hole caves I am making the most of extra good days.
Trying not to think about the aches in my left boob. Need my Chemo monster to keep chomping.

[Mai7]

Thanks Rosie, yes finding out the chemo is working is sanity after all the side effects!

Thanks WolfEE, I initially had 4 nodes identified as positive from a biopsy and I'm hoping that if the nodes are now negative (still an if as they didn't biopsy) they can at least remove less nodes (rather than full clearance) so I still keep some immune system down my left arm. I'm just relieved that things are improving as I was scared of being stuck with this tumour if it couldn't be shrunk for surgery. The mass is still there but it's changed form and size. Who knows, maybe some of it is scar tissue by now.  They may call me back for an MRI if they need to see more granular detail before surgery options can be discussed. I feel I'm coming onto the surgeons radar soon though! ✂️

[Rosie65]

That's brilliant news Mai, so much easier to accept the side effects when you know the chemo is working.

I've been referred back to the breast surgeon too now to discuss my bilateral mastectomies, I can't wait to get them done. Now that the lump has shrunk so much I just want it gone.

[WolfEE]

My explosive gas moment was in A&E I was on the bed and had to lean across for paperwork on the side table (whilst drip wired to my foot) so awkward movements and as I stretched out it come 💨 I was horrified!!

[WolfEE]

Wonderful news Mai7 that the chemo has shrunk eveything and surgery will be planned now 😀👍
Node negative would that mean you wouldn't need lymph nodes removed?
My original MRI scans etc never showed any suspicion with my lymph nodes, luckily they decided to do a biopsy before my treatment was planned and came as a shock even to the surgeons that two of the four (I think four) come back positive so it was mentioned at that point I would have full clearance when surgery time come and I think radiation on then as well?
If I show a good response with the chemo perhaps they can leave or lympth nodes alone??

[Mai7]

Hi Ladies, hope you are all doing well.

Trisha, glad you are being well looked after and you have shrinkage - it makes the side effects worthwhile.  Like Rosie said, we are beyond embarrassment now. Re. Explosive gas, I always like the phrase "better an empty house than an angry tenant"

Raitchr, hope you get some sleep and hooray for getting your penultimate chemo ticked off! 

Rosie, sorry to hear about your Neice. That must be quite a blow for her but best she knows now. I got my daughter a leaflet in fibroadenomas today as she needs to keep them monitored. I don't want her to end up like me.

Im generally feeling good - tongue still a bit weird taste-wise. I was prescribed Buscopan to stop stomach/bowel cramping so have been taking that to try and regain control of my bowel.  I went for a scan this morning and was pleased to hear confirmation that the lump is shrinking and the orange peel appearance has all vanished and the enlarged lymph nodes could not be seen on the scan which hopefully means I could now be lymph negative.  All good signs that the chemo has been effective enough for surgery to go ahead at the end.  I will sleep with a little less weight on my mind tonight. 🛌

[Jay68]

Hi Trisha - glad to hear you're being looked after well If your bowels are as loud as mine - I feel sorry for your embarrassment!! - Good news on your shrinkage - so all the pain is worthwhile when you get a result like that. You've got something to smile about now - go for it!! J x

[Jay68]

Hi Treehouse - yes treatment went well - just feel tired due to steriod disturbed sleep and having to use the toilet twice in the night due to extra fluid consumption!!!

I feel your pains with the hot flushes - I've had three following treatment today and I also get them in the night - I do wonder if the menopause will reverse once chemo is over? Have you had your op yet? J x

[Jay68]

Hi Heather - I'm the same as you - my last chemo cocktail (D+H+P) is 24 August.  I had a 1 and half hour delay today due to the Pertuzumab arriving late!  

I too am feeling OK but tired - as again don't sleep well on huge steriod dose.

J x

[Rosie65]

Ha ha Trisha - we are all beyond embarrassment these days as we just have no control over our bowels. Excellent news re the lump

Heather - good to get another one out of the way.  Had 5/12 today, managed to find a vein so think they will continue with this method rather than fitting a PICC line.

News on gene not so good today, my niece has inherited it. She is 27 so has lots to think about. At least me getting bc has enabled everyone to find out and take preventative action rather than going through all this s**t

[Trisha69]

Almost there Raitchir 🙂

[Raitchr]

Chemo 5 done and dusted, next and last T on 24 Aug.

Feeling ok but tired as don't sleep well thanks to mega dose of steroids, off for a nap.

Hope everyone is feeling better.

Heather

[Trisha69]

Thanks ladies. Being well looked after. Staying another night whilst they manage pain and bowels! I trumped very loudly earlier and they all laughed said better out than in.
Had scan..has shrunk from 33mm to 16mm. Waiting Oncologist come have a chat x

[katie11]

Good luck for scan trisha .

Hope everyone else doing ok!

No.5 /9 done yesterday and not feeling too bad! Saw oncologist to and she went through next step of radiotherapy! She says this is the easiest bit after everything else and is making arrangements to book me in x