Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

Evening ladies, just a little warning - yesterday I ended up back at the hospital, my lower leg swelled up so I thought I had better call my chemo nurse, she said suspected blood clot, apparently it’s not an uncommon side effect - yes yet another one! So I am now self injecting blood thinning stuff everyday for 10 days. I found this a really scary one couldn’t sleep last night for thinking about it. One more week of more or less normality and then #round3 - it seems to come round so quickly. I don’t know how you girls who are having chemo every week are coping, hats off to you 😘
How is everyone coping with their Xmas prep I was doing so well now haven’t wrapped a thing or written a card and still have a few presents to but 🙈
Take care all
Member
Posts: 16
Registered: ‎17-11-2018

Re: November 18 chemo starters

Hi Holeinone, thanks for your tip about the chewy mints, I will definitely try that. I am sorry to read that you passed out and have been suffering so much. I totally understand, don't feel bad. We are all coping the best we can with a tough situation. I just try to remember that the chemo is my friend, trying to cure me and that each day is one day closer to the end of treatment. I'd like to offer you a virtual hug and say you're not alone my friend. Xxx
Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Tigerlilli, just seen your post about taste buds and mine are OK so far this time as I ended up eating a chewy mint while having some of the chemo. It has really made a difference to what I can still taste. Also, I brush my tongue as part of tooth brushing and this removes any build up before it really gets going. 

Member
Posts: 25
Registered: ‎28-11-2018

Re: November 18 chemo starters

Nice to see fellow November ladies bearing up well.

 

I'm letting the side down a bit.  Not doing too great on round 2. Disgraced myself at the hospital by fainting in the chemo chair, I was so stressed. Poor hubby was so shocked. Other people are just sitting there getting on with it and I'm making a drama out of it all. Thankfully no nausea this time either, and thanks to tummy calming meds and slightly reduced steroids, I'm not trying to eat everything this time around. Really tired this time, think I was on adrenaline last time and I'm thankfully sleeping a lot now. No night sweats so far (4 days in) as I've been drinking plenty. Just lacking in any energy whatsoever.

 

Smiley Sad

Member
Posts: 16
Registered: ‎17-11-2018

Re: November 18 chemo starters

Hi Tbird, my chemo was reduced by 20 percent this time too. I'm actually more nauseous this time but hoping to avoid the hospital and neutropenia again. Here's hoping ; \
Member
Posts: 16
Registered: ‎17-11-2018

Re: November 18 chemo starters

Hi all, it seems we're all pretty much in the same boat (albeit a bit sea sick)! Day 5 post FEC#2. More nausea this time. Had constipation and then the opposite. Taste buds are nuts... Still trying to find some flavour and all fluids seem slimey at the moment.
I went for the shave last week as my hair was falling out all over the place... In my food etc. Its a relief actually.
I am looking on the bright side. We are v almost at the half way mark ladies! Hang in there. Xxx
Member
Posts: 160
Registered: ‎08-09-2018

Re: November 18 chemo starters

Thank you liloc
I also suffer with the nausea and awful taste
One more EC to go then I will be counting down 😀
Well done on the shave Gogga
Mine appears to be growing back
The nurses were shocked at how blonde it has come through and even said there’s more hair than they thought it’s just so so blonde xx
Member
Posts: 12
Registered: ‎04-12-2018

Re: November 18 chemo starters

After 4 days of sheedding hair - since day 14 post first dose of AC, I transitioned from major anxiety and sadness and stress to just being so irritated by it all I shaved it short last night. Feel so relieved. its happened and its over and now i can work on ways to live with it. First day with wig at work and got complements for new highlights! Tonight I think i will tackle those last grey stubbles because they add to the sensitive scalp when i want to sleep. Not all as easy as it sounds though - keep on telling myself that Im bald 

Member
Posts: 35
Registered: ‎21-10-2018

Re: November 18 chemo starters

Afternoon all, day 6 after EC#2 and going through my rough patch queasywise. Was the same last time, I think it’s when I come off the steroids and main anti-sickness pills and am left with the “as and when”. Was given a bigger supply this time so there’s currently quite a bit of as and when (within stated doses, of course). Horrible taste buds at the mo too, everything tastes metallic or weird. The things that worked last time, like lemon and ginger tea or lime cordial in water, still aren’t nice. Have just had a lovely cheese on toast with mature cheddar so maybe I should just go for stronger flavours. Any suggestions? Funny, all this reminds me of being pregnant - nausea, going off alcohol, things tasting funny, cravings for certain foods....but no baby to look forward to ☹️.
Clarabella, thanks for the note about the port. Glad I did the port in the end, took a lot of my pre-stress angst about needles and cannulas away.
Kateday, thinking of you today, hard I know but try and remember it’s 3 down. And you should be hunky dory to celebrate Christmas nicely, so that’s a bonus xx
Member
Posts: 160
Registered: ‎08-09-2018

Re: November 18 chemo starters

Hi ladies
Good to see your holding up better
I’m of for round three tomorrow, ant to top it of it would have been my mums birthday
Well I had to shave my legs yesterday, I’m not sure how normal it is to regrow hair after cycle two , but now I’m hoping it stays
Haven’t lost any head hair this time and only now have a bald ish patch the side I lie , don’t get me wrong it’s thin and not much of it but there is some there
Xx
Member
Posts: 7
Registered: ‎27-11-2018

Re: November 18 chemo starters

Hi All,

 

So I had my second chemo on Thursday and for me Saturday has been the worse both times so far.  Just feeling like I've been hit by a bus.  Both times I've gone back to bed for the afternoon.  Having said that I think I've got off quite lightly compared to some of you so far.  This time the headaches have been much less, although I'm wondering if that's because we used gauze on my forehead under the cold cap this time, so I didn't end up with a frozen forehead unlike round 1.  

 

My hair is still hanging on.  There's days when i think it's shreding more and days when I think it's not.  Hair washing is becoming ever increasingly stressful.  Even my ladygarden seems to have stopped coming out at the moment which has left me with an interesting pattern down there!  

 

The nausea was much more managable this time too, following the eat little, often and when you wake up in the middle of the night rule.  

 

For those with ports I asked the nurse about bruising and was told that because our platlets are killed off too we will bruise more easily and then take longer to heal so everytime they access the port we'll bruise.  

 

 

Member
Posts: 19
Registered: ‎06-11-2018

Re: November 18 chemo starters

Hi ladies, thanks Liloc I'm doing better today after chemo 2, that's to say I didn't end up having to go to A&E like I did after last one. Have had more energy and managed to get the tree up and decorated with a bit of help from the kids.

Hair has been shedding like a yeti and now look like a baby bird according to my 11 year old daughter, so am borrowing my brother-in-laws clippers tomorrow. Have got used to the wig but decided it's better without the wig liner. Was sat on the sofa earler and wondered why my hubby was looking at me and laughing. The whole thing had slipped backwards so the fringe was way back. Have tightened it a bit and decided to ditch the liner thingy. I agree the pretied bamboo headscarf I bought is lovely and soft to wear so am using this more around the house, going for chemo.
The PICC line fitting Thursday was a bit of a nightmare. It went in the wrong place (in my neck - eek!) to start with so had to go to Xray so they could see where it was then manipulate into the correct position. My husband hadn't even realised how long I'd been and was happily watching the snooker in the waiting room when I came out eventually.
Saying that the chemo was much easier with it so glad it's in. Just still feels a bit weird but I'll get used to it.
The side effects are pretty yuck this first week on the ateroids and anti-sickness but seems to be keeping the nausea at bay.
Good luck those going for cycle 3. Really hope you've found some more support Emily. We're here if need us. hugs everyone xxxx

Member
Posts: 27
Registered: ‎02-11-2018

Re: November 18 chemo starters

Hi everyone, hope you are all doing ok. 1 week post 2nd cycle of EC and have felt much better than post 1st, am convinced it is through not using the cold cap as I have not been away with the fairies. I did work as a receptionist at a private health clinic but haven't worked since 1st chemo because of risk of infection. Anyway, have been having problems with my left arm (surgery side) so decided to go and see my boss who is a physio for more exercises as the ones I was doing weren't enough. He examined me and told me that my problems were nothing to do with my surgery or my chemo but with my neck! The point I am making is don't assume that all your problems are treatment related and get them checked out. On a lighter note it was the OH works christmas do last night so me and the daughter decided to have a girls night in and ordered pizza and nibbles,

and binge watched The Big Bang Theory! I absolutely loved the pizza and the fact that I could taste it, until 4 this morning when I woke with raging indigestion, I took every anti-indigestion medicine in my cupboard and am just now feeling.So that's another thing to stop eating.I will be surviving on toast and soup at this rate!Smiley Frustrated

Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

I’m lucky enough I think to have been covered by private medical through my company, so I can see the bills! OMG if nothing else girls we are expensive! I say lucky I think because whilst the accelerated speed of consultation to treatment was great and the luxury of a private hospital nice and my consultants great there is not much in the way of aftercare or community I literally haven’t met anyone else at the hospital/chemo going through treatment or been referred to any support groups centres etc..
My hair is just starting to shed but can you believe I just had to wax my legs etc couldn’t look at them any more it was the most pain free wax ever - just more or less fell off!
I was wondering what might have happened to Emily, I felt so sad for her she seemed so alone, Emily if you are reading let us know how you are 😘
Member
Posts: 35
Registered: ‎21-10-2018

Re: November 18 chemo starters

Seem to have found the right drug cocktail to keep my nausea at bay following round 2 on Weds. Do have to keep eating as soon as I feel a hole in my stomach (this morning at 5am!) but once I fill that, I seem to be ok. Even found the energy to pop into hospital for a headscarf tying session. Don’t know how much of the faffing around ones I’ll do but I bought a couple of lovely soft pre-tied ones for just wearing around the house so husband and son aren’t too scared of freaky mamma (haven’t cut my hair but Day 23 practically bald, just shedding on its own, so look a right state)...
Member
Posts: 160
Registered: ‎08-09-2018

Re: November 18 chemo starters

Hi
My oncologist is going to reduce mine to
The side effects were just awful I couldn’t do anything for nearly ten days well the basic get up get dressed
I will also have a pic line fitted but refused to have chemo put back a week so said I would deal with the vein pain this time , as I’m due Monday for next cycle and want to try and be coming out other side of the side effects by Christmas xx
Member
Posts: 31
Registered: ‎22-10-2018

Re: November 18 chemo starters

Hi Sals

im having my 3rd one on the 18th too so I will be thinking of you and all the others going through this nightmare.  Side effects are horrible aren't they, the way I'm looking at it is all my side effects seem to be the norm so treatment must be working and it's not going to be forever.

 

My oncologist has stopped one of my drugs from FEC and reduced the other 2 to 80% side effects are not so severe, but now I'm worried about the long term outcome - will the chemo still be as effective, after my 3rd session I will be having 3 sessions with the targeted chemo, I will be having a mastectomy after that.  I've asked my oncologist and she didn't really answer just said "we have to reduce it for you to survive the treatment" 😱.

 

Im going to stop worrying and think positive, they wouldn't be continuing with treatment if they didn't think it would work (my surgeon said it cost £40.000 just for the drugs).

 

My sister has put up my Christmas decs for me, my house looks so cosy and warm, it looks so wet and gloomy outside so feet up and Netflix for me.  Have a lovely weekend everyone 

 

love Tbird xx

Member
Posts: 47
Registered: ‎02-10-2018

Re: November 18 chemo starters

Congratulations! T-bird 👍
Saw my oncologist last night and was discussing the chemo side effects and discovered nearly everything I hate is all down to the steroids but without the steroids I would probably feel much worse than I do from the chemo so I guess it’s - suck it up buttercup!
Feeling much better this week and trying to take part in a few Christmas activities-even managed a small wine! #3 on 18th Dec so have week and a half to get Christmas done and dusted. Wishing everyone well with their next round 😘
Member
Posts: 31
Registered: ‎22-10-2018

Re: November 18 chemo starters

Had ultra scan today yippee my nasty has shrunk by 6mm - happy days 👏🏻👏🏻

Member
Posts: 12
Registered: ‎04-12-2018

Re: November 18 chemo starters

Getting # 2 EC next Friday. Trying to get all Christmas shopping done before then! Hair shedding starting today.