Member
Posts: 25
Registered: ‎21-06-2018

Re: September 2018 Chemo Starters.

Hiya Girls.

I am still here, I had my dental work done and chemo stopped for a week.

Had chemo on Thursday last week and the side effects are the worse I've ever had, I thought with a week gap they would be easier but seen to be worse.

Muscle and bone pain and stabbing pains in back and side of my head.

Oh and don't get me started on the hot flushes. Jacqs just like you they are crazy. I can't wear anything on my head as soaking in sweat.

Kids are keeping me upbeat with there excitement for christmas though.

Hope you are all coping with your side effects.

Only another 8 weeks to go!! Feels like an eternity. 🙄🙄🙄

Kath xx
Member
Posts: 62
Registered: ‎12-06-2018

Re: September 2018 Chemo Starters.

Hello Gaby & Pulapula,

 

I’m sure everyone has got sidetracked with SE’s & getting ready for Christmas.  Like you Gaby, i’ve been so tired & out of breath this last 2 weeks.  Doing simple things is taking up so much energy.  I went food shopping this morning after having bloods taken & thought I was going to pass out.  As for that awful taste, I will be so happy to get rid of that.  I think we should just hide those scales until well into Jan 🤪

Gaby that’s terrible to hear about your daughter - as if you didn’t already have enough to deal with.  Sending big hugs & positive thoughts ❤️

 

Pulapula - good luck for Friday.  Will be thinking of you.  It is such a nuisance having to wear hats etc.  I’ve taken to wearing a pink beanie that my sister bought for me.  One minute I’m freezing, the next I have major hot flushes so it gets ripped off ! 

 

Hope everyone one else is doing ok xxx

Member
Posts: 89
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Hi Pulapula,

 

I really hope everyone goes well for you on Friday. I'll be thinking of you. I've got surgery in late March, I think, so a bit of time to go still...

 

I'm fed up with hats etc as well, especially as nothing really seems to keep my head all that warm.

 

Had a bit of a mixed day today. I'm feeling better but our daughter was diagnosed with scoliosis at Guy's this morning and will probably have to have an operation to correct the curve in her spine at some point next summer. We seem to have gone from a family with very few health problems to having to deal with really rather major issues. I'm sure she will be ok in the end, but it's not easy for a teenager, who is about to embark on university etc. I just can't wait to see the back of all these doctors and hospitals!

 

Gx

Member
Posts: 49
Registered: ‎25-07-2018

Re: September 2018 Chemo Starters.

Hi all, it's been a bit quiet on here lately - hope it just means you're busy getting ready for christmas, and are coping OK with your side effects.

 

I finally decided today what surgery I am going to have on Friday - WLE with reconstruction. I'll find out the pathology results on 7 January and really hope I don't need to have more chemo...It's been nearly 4 weeks since my last cycle and I don't miss it one bit! I've still got my PICC line in, just incase...Just wish my hair would start to grow back as I didn't get a wig and I'm getting fed up of wearing hats and scarves.

 

 

 

 

Member
Posts: 89
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Hi Jacqs,

I hope you had a good weekend. Sounded like you definitely had a good plan!

I'm slowly emerging from the EC fog. I think my haemoglobin crashed again, as I am very short of breath and even more tired than usual. My brain completely went to pot over the weekend. My daughter thought it was funny - 'you just look like you're drunk mum!'. I couldn't string a sensible sentence together, muddled up words and was totally incapable of concentrating on anything. I feel very slightly more with it this evening, so hopefully I'll be a bit better tomorrow. Had the shivers during the night at the weekend as well and got told off by my lovely nurse today for not checking my temperature and phoning in. Oh dear! She's running another blood test just to make sure there's nothing serious going on, but really I'm fine 😁 🙃 😝.

Absolutely foul taste in my mouth which only goes when I'm eating, so of course I'm constantly nibbling. I'm definitely not going on the weighing scales right now 😡 😁.

Hope you're all having a reasonable start to the week.

Gx
Member
Posts: 62
Registered: ‎12-06-2018

Re: September 2018 Chemo Starters.

Hi Everyone,

Hope you’re all having a good weekend, despite this cold weather.  Today’s going to be a day tucked up at home for me maybe wrapping some more Xmas presents 🎁.

My stepdaughter is back from uni for the holidays so it’ll be a nice Sunday lunch then curl up on the sofa & watch Christmas films.

Thursday was my penultimate Carboplatin / Paclitaxel sesssion - it nearly didn’t go ahead cause my platelets & neutrophils we’re low, but they repeated the blood tests early on Thursday am & they’d risen just enough.  Today was my last day of taking steroids - yeahhh 😁.

I’m fighting a cold & sore throat at the moment but praying I can stave it off till I get my last session out of the way next week. 

Gutted that the nail on my right big toe is turning black - 1 week from the end.  Isn’t that Sod’s law.  Finger nails haven’t got any worse.  The oncologist nurse said that I may get another horizontal band on each nail with this last cycle ( called Mees lines ) but the cuticles still look intact so she said I should avoid losing fingernails if I keep moisturising them & just let the bands grow out.  

Wishing you all a good week.  With each step closer to Christmas, we’re all getting closer to this nightmare ending. Take care all ❤️😘

 

 

 

Member
Posts: 56
Registered: ‎01-09-2018

Re: September 2018 Chemo Starters.

Sounds like the birthday dance did the trick GabyF 💃🏻🕺 love that idea 😍

So pleased it’s not just me ... I wander round shops in a complete daze as I can’t focus on what I’m doing 😂

Really hoping the worst bit is nearly over too ... we are getting there ❤️💪🏻❤️ xx
Member
Posts: 89
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Hi LisaT,

I'm so glad you're starting to feel a bit better. The walking is a nuisance, I agree. Thank heavens for lifts and escalators 😁. And chemo brain is another one. I've hidden my presents in rather obvious places, but I'm hoping that will enable me to remember where they are 😣. I'm also forgetting loads of other stuff, words, tasks, appointments, you name it, it's terrible 😡. So I'm making lots of lists, but then I have to remember where I put those 😁.

We had a lovely evening to celebrate my husband's birthday, thanks. My son was keen to bake the cake, mainly so he could lick the bowl 😋. So my husband got a tasty cake, some wine, dinner, lots of presents and a special happy birthday dance from me and my daughter 🕺 🎉 🕺 😁. All this cheered him up immensely. He's also got today off, so we're going out for a nice lunch. I wasn't sure if I would be up to it, but I actually slept quite well and am still feeling OK.

How fantastic that the end of all this rubbish is now in sight for you. I don't suppose any of us will ever be able to forget about the cancer, pills or no pills, but hopefully the worst is over soon and we can all return to something approaching normal ☺.

Gx
Member
Posts: 56
Registered: ‎01-09-2018

Re: September 2018 Chemo Starters.

Pleased your first EC went ok GabyF 💪🏻 hope you had a good night. Happy Birthday to your hubby🎂🥂 Impressed you are thinking of making a cake ... I just slept after my first FEC 🙈

Had my 2nd T last Wednesday - felt really spaced out after this one and had more bone pain but hopefully over the worst bit now! Also feel like I’ve aged about 20 years ... I’m walking so slowly!

Signed the forms agreeing to radiotherapy yesterday which I should start end of January. 3 weeks of that and then I’m released back in to normal society armed with tamoxifen for 10 years and check ups every 6 months! It’s a weird feeling!

Pleased everything is sorted for you now Keeno72 ... last T for me on 28th now ... we are nearly there ❤️💪🏻❤️

Wrapping presents later today so Christmas tunes on full blast 🎄🎅🏻 ... just need to remember where I’ve hidden them all now 🙈

Hope everyone has a good week 😘 Lisa xx
Member
Posts: 89
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Hi everyone,

 

Had my first EC session today and am feeling ok. I was half expecting to be throwing up by now, as I spoke to a couple of lovely ladies on the ward last week, who were feeling dreadful after their first EC. I had a barrage of anti-nausea drugs this morning and have been given a large bag with more goddies for taking at home Smiley Very Happy- so far they seem to be doing the trick, fingers crossed! I am feeling a bit more dopey than usual, but my kids would probably say that they can't notice any difference Smiley Wink

 

It's my husband's birthday today, so will bake him a cake in a moment. Wasn't sure I'd be up to it, but am very relieved that I can go ahead. He was a little low last night - combination of getting older Smiley LOLand the ongoing worry of my treatment. He is not one for letting on much if he's stressed or sad, tends to bottle things up a bit, and the last few months have of course not been easy. Hopefully a bit of yummy cake and presents will cheer him up.

 

Hope everyone is having a reasonable week.

 

Gx

Member
Posts: 9
Registered: ‎31-07-2018

Re: September 2018 Chemo Starters.

Hello all haven't been on for a while after having a terrible 1st cycle of docetaxel, anyway got it all sorted with a reduced dose of steroids halved actually, sleeping tablets for 5/6 days and paracetamol and codeine at night. I have done 3 only have 1 left now on 27th woop woop! 😁
Been reading posts and a few little hinters and positive comments i hope.
Re indigestion I gave up on any meds and have ginger ale/biscuits lemon and ginger cordial seems to help get all the gas out! Never had so much gas inside!😲
I had recon b4 surgery and then suffered a recurrence in skin on new breast....great news the little lumps have all but gone having changed to docetaxel i only have minor surgery now in Jan! 😁 re recon for those considering its looking real good now after 4 months takes a while but i now feel worth it. I had implant btw.

Re nasty nails a v good nurse told me to get my nails painted black/dark i have gel night b4 chemo and all my nails bar 1 are in good nic the one that looks like it might lift was damaged beforehand I'd recommend some nice dark sparkly nails for xmas!
Finally hair!!! My hair didn't get any worse after started docetaxel still look like prince william and its attempting to grow back but not on top!!! 🙈🙈my eyebrows thinned as soon as changed to doxe and eyelashes I'm hoping what i have left lasts through next cycle as I'm filling them in well and some good eyeliner work means no ones noticing my sparce eyelashes! Finally i have a great wig and on my good week before chemo week.I've been out for lunch nearly every day will be feeling good for Xmas before last round......hang in there all nearly there....😍😍😍xxx
Member
Posts: 5
Registered: ‎06-12-2018

Re: September 2018 Chemo Starters.

Reflux!
Member
Posts: 5
Registered: ‎06-12-2018

Re: September 2018 Chemo Starters.

Hi jacqus, ive not had any acid reflex ir acid in upper part. Its what passes out!!

Like a curry from the underworld!
Member
Posts: 62
Registered: ‎12-06-2018

Re: September 2018 Chemo Starters.

Hi Treemad

Gaviscon is a complete waste of time.  The only thing i’ve ever found to work on severe indigestion / acid reflux is Lanzaprozole.  Maybe try your own GP & see if you can get them to prescribe something stronger like Lanzaprozol.  It’s usually 1 tablet a day in morning & it works pretty quickly.  Xx

Member
Posts: 5
Registered: ‎06-12-2018

Re: September 2018 Chemo Starters.

Yes in frequent communication with nurses, which recommended the gaviscon and constant omeprezole, but its not making much of a difference yet.
Highlighted
Member
Posts: 62
Registered: ‎12-06-2018

Re: September 2018 Chemo Starters.

Gaby it’s great to hear your genetic test was clear.  Such a huge relief for your famiy ❤️

 

Lisa I was offered genetic testing as i’m Also TN & have strong family history of BC.  My results not due till Christmas time.  Re nails, have gone for nice Christmassy red varnish & just going to keep fingers crossed.

 

Treemad - have you tried ringing the chemo helpline.  They are really good if you just want advice & you can chat through what SE’s your having.  I’ve had quite lot indigestion - I think due to steroids but i’m On completely different chemo drugs to you so it’s hard to compare.  I take Lanzaprosol on prescription which helps, but they say that if any 1 symptom is really bad, it’s best to get it checked out.  Please don’t suffer in silence - it’s all hard enough as is.  I rand 24 hr chemo helpline early hours one morning & the nurse was so lovely - she let me run through every single SE & then gave advice on how to deal with each one.  Hope you get it sorted soon 

 

Think i’m set for a late night all thanks to those pesky steroids this morning.  Wide awake 😬😬😬

Member
Posts: 49
Registered: ‎25-07-2018

Re: September 2018 Chemo Starters.

Gaby - so pleased to hear your genetic test came back negative.

Lisa-T, unless you’re triple negative, I don’t think they offer genetic testing unless you are very young and/or have a history of BC in the family.

My cysts were aspirated yesterday so no further treatment needed. That’s 3 I’ve had aspirated since diagnosis. I have a feeling I’ll be back there again and again every time I find another lump as I’m always checking now! And I am very cysty....

I finally slept like a log last night. So much so I was woken by my 9 year old at 8:58. He should have been at school by 8:50!!! I quickly got dressed and delivered him. Oops!
Member
Posts: 5
Registered: ‎06-12-2018

Re: September 2018 Chemo Starters.

I am aged 48, ER/PR- HER2+. 3cm lump removed in lumpectomy, one sentinal node with 3mm calls but other 20 nodes clear.

I have been perscribed 3 x FEC and 3 xTax plus Herceptin and Pertuzemab.

I have just had 1st of the Tax/Her/Per and am 8 days on.

Distended stomach, aches and pains, metallic taste, diarrhoea. But thankfully no nausea, which i struggled with on the FEC.

Trying Aloe Vera juice for gut, as well as gaviscone and Omeprozole, but it still feels like i am passing acid marbles (sorry if you are having your tea). Im avoiding fruit and acidic or spicy foods but it is still bad, what is going on inside to produce the chemical reaction? I don't feel the stomach is actually acidy.
Member
Posts: 56
Registered: ‎01-09-2018

Re: September 2018 Chemo Starters.

Thanks GabyF - will mention to my oncologist next week xx
Member
Posts: 89
Registered: ‎02-08-2018

Re: September 2018 Chemo Starters.

Thanks, Lisa. I was offered the test because I'm triple negative which has a higher chance of a genetic link. I don't think it's offered as standard for other types of BC at King's, but it's worth asking your hospital as they may have a different policy.

Gx