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June 2015

395 REPLIES 395
NMT_1
Member

Re: June 2015

Hi vic, thank you for the advice nobody has mention stating hydrated! I've got another check up on Tuesday to see of the infection has cleared up x
vic55
Member

Re: June 2015

Hiya ladies, NMT for me rads been ok so far. 16/20 done. Its tiring going every day, but manageable. Also with my blood/ kidney problems post chemo, I started at a low level. Talk to the rads team any concerns, mine have been lovely. I got given demerol cream, use it twice a day from day 1 and keep hydrated.
NMT_1
Member

Re: June 2015

Hi Babs! I am just the same panc about everything- even a sneeze! I got the lumps checked because on the same day my breast became really red and hot! Turns out it was an infection and I'm now on my third week of antibiotics I've gone from 250mg to 500mg to 1000g of them 4 times a day and it seems to be getting worse not better, but my surgeon seems to think it's ok, but my rads have to be postponed until I'm completely healed. How is everybody else getting on? Everybody says the rads are nothing like as bad as chemo but honestly how bad are they? I'm told it's sore and can make you tired and sickly but how sore?? I'm not sure I can cope with any more pain at the moment! Xz
Babalicious
Member

Re: June 2015

Hi NMT 1 did they take lymph nodes out as well? could be something to do with surgery as they moving around a lot when they in there and possibly nothing but best get it checked out My breast is really sore. Had 2 weeks of rads so far and they say it is because nerves have been irritated had no pain since about a month post surgery in April. Don't know about you but find I'm really stressing out about the smallest things now!
NMT_1
Member

Re: June 2015

Sorry I'm here again! I have a couple of lumps that have appeared on my upper arm. (I'm almost 3 weeks post surgery) any ideas/advice? Hope you are all keeping well x
NMT_1
Member

Re: June 2015

Sar boring and uneventful never sounding so appealing! 😊
NMT_1
Member

Re: June 2015

Morning ladies, I'm out of hospital very sore but glad to be home! Got an appointment to have my dressing removed in a couple of weeks then start discussing when they will pump up my expander beefier starting radiotherapy! Think most of my pain is from my lymph node clearance! Glad your home vic enjoy the rest!!
Sar41
Member

Re: June 2015

Yeah!!!! Hope you're all tucked up in your own comfy bed by now Vic. Bet it feels good to be home.

Hope everyone else is good. having a very boring quiet post chemo week and have decided I quite like life like that.

Here's to getting radiotherapy over with and a boring uneventful life afterwards I hope!

vic55
Member

Re: June 2015

NMT...how are you? I am finally home!!
vic55
Member

Re: June 2015

NMT... thinking of you....finally had some good news, docs think kidney function improving, so my biopsy got cancelled. One more plasma transfusion and the end of this hospital stay is in sight. May need ongoing treatment but I can deal with that.

Rads was meant to start tomorrow for me, but has now been delayed by a week. Planning apt all sorted pre kidney issues. Got to start the tamoxifen soon. Dreading it!
NMT_1
Member

Re: June 2015

Thank you ladies, I'm sat in the hospital waiting to go down, I was meant to go down at 11 but there was an issue with equipment and now they have said I'll be down by about 2:30! Just want it over with. Babs they took me off the taxol because of my fingers but I am improving everyday I can now fasten my own buttons and sometimes those of my daughter! Xx
Sar41
Member

Re: June 2015

Sounds as though you've been through the mill as well Bab. I had a bit of neuropathy but it resolved and they dose reduced me right away, at my request, was terrified about how I'd be able to look after the children with numb fingers and toes, but it's fine now.

How are you managing? Is it getting better?

Hopefully you're getting the drugs out of your system as well, sounds as though you had a bit of everything!

I'm starting rads about the 16th I think. TBH they wanted to start the week before but after the last few months I've decided a little family holiday is more important so we're heading to the Peak District for a few days. Am so excited shout swimming with the children it's untrue!

Good luck tomorrow NMT - just think you get to come home with a new disease free boob! x

Babalicious
Member

Re: June 2015

NMT I'm still here!  Been reading everyone's posts and thinking of you all but sometimes my fingers have been too sore to type!  Took a bad reaction to the tax twice - it was horrible and my body basically started to shut down.  6 nurses around me within seconds reversing the drug.  Reacted even when they slowed the drug down and oncologist said I might not be so lucky if I had it again so was changed to the weekly taxol.  Took as long to put that through as I had every drug available to make my body accept it.  All done and dusted and hoping the neuropathy improves soon (had to get one dose delayed as fingers were numb!). Vic I hope you get home soon.  Feel like a lot of us have been let off lightly when I see what you have been put through!  NMT good luck for Monday, be thinking about you. Has anyone started their rads yet? X

NMT_1
Member

Re: June 2015

Are there only the three of us left on here now? Vic hope you are getting well looked after, I'm sure you are and when this is all over you'll be able to look back and feel proud of the strength and resilience you have shown throughout all of this. I don't think any of us will ever be normal again but we will be stronger because of our journey. I know how soppy I'm sounding but I think I'm compensating for how terrified I am about my op on Monday! Have a great Sunday ladies, enjoy the extra hour! Xx
Sar41
Member

Re: June 2015

Keep peeing - that's good!

I don't know what to say other than you're in very good glands with lots of positive thoughts coming your way.

Big hugs x

vic55
Member

Re: June 2015

Erm mixed. Peeing more (which is good) but platelets lower again and neutrophils low. Getting plasma and dialysis and blood transfusion today. Day off tomorrow and biopsy on Monday. All feeling bit surreal to be honest. On Mon will be 2 weeks in hospital. Rads been delayed till they sort kidney function.
Sar41
Member

Re: June 2015

I'm feeling fine just looking forward to life without chemo, weekly treatment just takes over your life, I won't know what to do with myself this week lol!

Also have new short bobbed wig which I'm living. I honestly don't think I'll ever have long hair again. At least chemo makes you try new things hair wise.

How you doing Vic? Been thinking about you a lot.

How's everyone else as well? Are we all finished chemo now? x

NMT_1
Member

Re: June 2015

How are you feeling Sar? I know it's all over but make sure you still take the time to rest and recover, vic I'm gutted for you, hope you are feeling better soon xx
vic55
Member

Re: June 2015

That's good sar. Weird to be happy about being poisoned isn't it? I'm up and down, stupid platelets dipped again today. I need to stabalise before they let me go 😞
Sar41
Member

Re: June 2015

Bloods are ok so pre meds just about to go up.
Feeling so relieved that this is going to be it, all over and done with today.
Hope you keep improving Vic x
vic55
Member

Re: June 2015

Hope today goes ahead sar? You feeling better. Am still in, had dialysis yesterday, blood levels ok. Being monitored and wait and see...
Sar41
Member

Re: June 2015

Wig appointment on Wednesday but mines coming back thick and fast (and still grey) now! Wig man is a really good hairdresser so am going to see what he thinks.

Got a chest infection so not sure if tomorrow will go ahead, keep everything crossed for me.

Hope you're still on the mend Vic xx

NMT_1
Member

Re: June 2015

Vic that's awful! Can't believe I'm complaining about aches and pains! Hope you are back on your feet soon, sending you big hugs! Sar did you but the wig? Good luck for Monday x
vic55
Member

Re: June 2015

Yup it sucks! Worst part oddly was being told in ITU I needed ct scan for kidneys (thankfully clear) last scan for me was cancer. No logically reason to think it had spread, but was said so casually I just lost it!!

Sar....good luck for Monday...will be fab to get it done! NMT...if you are concerned about anything call your team.
Sar41
Member

Re: June 2015

NMT I've still got one to go (roll on Monday!) so can't help with that one, got it all to look forward to I suppose x
Sar41
Member

Re: June 2015

Mate that's b*****y b*****y awful. Rant away!
Must have been scary for you and your family and you've done so amazingly all the way through as well.
Sounds as though you're being well looked after and on the mend but even so it must be pretty grim.
Sending lots of love, hugs and positive thoughts xx
vic55
Member

Re: June 2015

Er no....but I've had a fairly s@@t week. I just wasn't picking up after final round, no temp or sickness just exhausted. Last Mon went into hospital, had bloods done, haemaglobins dropped to less half what they should be. Got admitted, they clocked a problem with my kidneys, so spent Mon / Tues in ITU, then have been transferred to a renal ward in cov. Am still here. Got something v. random called HUS. body has attacked red blood cells. They think the chemo drug did it. Consultant here only ever seen 5 HUS patients and it being caused by chemo is even odder. So last few days have involved 8 units of blood being transferred, dialysis, and plasma! My arms look horrific (4 canulas in ITU) to be honest, its been quite surreal and full on!!

Treatment seems to be working, but not fair doesn't quite cut it. Sorry for long ranty post but I really cant take much more crap!
NMT_1
Member

Re: June 2015

Is anybody else suffering from chemo Sid effects without actually having the chemo? My body seems to remember how I felt after chemo and has gone into auto pilot! X
NMT_1
Member

Re: June 2015

Definitely buy it Sar! I have 2 and love the option to change styles for special ocaisions! I'm still in my wig I'm hoping my hair starts coming back fairly quickly now but we will see, it's definitely grey at the moment! X
vic55
Member

Re: June 2015

Sar if it makes you feel good...buy it 😊! You could always donate it if you barely use it
Sar41
Member

Re: June 2015

I'm still wearing scarfs when I go out but it's coming back quickly.

Trying to decide whether to buy a second short bobbed wig as per my original plan or if it'll be a waste of money.

First world problems and all that!

vic55
Member

Re: June 2015

Mine is coming back, but mix dark and grey. Still need scarfs, slightly worried its monk like, def more at back then crown!!
Sar41
Member

Re: June 2015

Mines coming back completely grey and there's quite a lot of it. Considering putting a platinum rinse on it and embracing it.

Hoping it's not curly!

NMT_1
Member

Re: June 2015

Hi ladies, how are you all getting on? Has anybody got any hair growing back? I have a definite covering of fluff and was wondering if I should cut it off to encourage it to grow I thicker ( I have heard that in some cultures parents do this to their babies!)
Boodles
Member

Re: June 2015

Hi sar41, my onc seems to think i have an underlying infection, so he has given me antobiotics and hopefully can continue with my 3rd chemo next wednesday. Headache seems less today so maybe it is the infection and my temp was normal, 1st time in a week. Hope all is well with you x

Sar41
Member

Re: June 2015

Hi Boodles

Nope no headaches for me just the peripheral neuropathy.

Must say though that that's lessened since my dose reduction. 

Chemo for me was a choice though not a definitive treatment so the Onc was ok about reducing the dose, I know that's not the case for everyone.

Hope they get better x

Boodles
Member

Re: June 2015

Hi sar41, i too am doing weekly taxol for 6 weeks. Have done 2 of them and my 3rd 1was defered for a week coz i had a high temp. My main problem was pounding headaches, did you get any ?

Sar41
Member

Re: June 2015

Great news NMT, so pleased for you.

Enjoy the next few weeks getting your life back after chemo x

vic55
Member

Re: June 2015

Yeahhhh!!! Sounds positive NMT. Means you get few weeks off now to rest/ relax? Pleased it had shrunk so much x
NMT_1
Member

Re: June 2015

Appointment today was better than I could have hoped for, my MRI shows that the tumour has shrunk so that it can no longer be seen on the scan! Yey! I've decided to go for a mastectomy and reconstruction all in one go and will probably have to have rads after but not sure yet for how long, I have a provisional date of October 26th for my surgery... Eek! X
vic55
Member

Re: June 2015

Yup sleeping tons. I need it!! I had the total choice on surgery, the consultant suggested lumpectomy (which I went for in end) but said I could pick mastectomy and decide literally up to day! If you want reconstruction on day then longer surgery but it was my choice. They got mine with good margins, but does leave scars. However for me, easier surgery, recovery and you cant tell when am dressed have had anything done.
NMT_1
Member

Re: June 2015

So pleased you got it finished vic, hope
You are recovering well... I'm seeing my surgeon tomorrow, how much say did people get between lumpectomy and mastectomy? X
Sar41
Member

Re: June 2015

Vic that's brilliant - now rest!

I had #5 T dose reduced yesterday and only a bit of tingling in fingers so hoping that's the worst of it. 4 more to go.

We're getting there ladies and think we should give ourselves a break, we've done amazingly x

vic55
Member

Re: June 2015

So....WBC nearly doubled, FINAL CHEMO DONE!! I know next few days will be crap, but so relieved to get it done. Hope everyone is doing okay, as at the moment...am feeling kinda pleased.
vic55
Member

Re: June 2015

Ohh I just need to get over myself a week isn't that bad. Completely stupid I know, but have had wed in my head as the end of it all....and yet again another blip means delay. I have zero patience at the best of times and to miss my end date has just really got to me. ( am kind of thinking tomorrow will confirm it, current count is .77 it needs to be 1 or over that's a hell of a leap) I also don't feel that bad!! I'm tired but have been so for months!!!
NMT_1
Member

Re: June 2015

Oh no vic! Gutted hope you get a better result tomorrow and sar I didn't realise there would be a delay I returning to work after rads...I'm not sure I am having it but I've no idea! fingers crossed for you both xx
Sar41
Member

Re: June 2015

Gutted for you, think we all just want this over with now.

I'm back in for Packitaxel at 20% dose reduction tomorrow as still got neuropathy. If that doesn't work I'm back on EC with its delightful side effects.

Oh and the oncologist has told me I need to take 2 months off after completion of radiotherapy before going back to work. That makes it February, seems to be stretching out for ever x

vic55
Member

Re: June 2015

Gutted, blood test this morning and white blood cell count not high enough. Being re tested tomorrow. Stupidly upset at the thought of a delay. Want this done.
NMT_1
Member

Re: June 2015

Me too! Want answers about my gene testing so I can prepare myself for surgery and then get on the road to recovery! X
vic55
Member

Re: June 2015

Wed next week. Rads 4 weeks after. So want this done! X