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September 2018 Chemo Starters.

Member

Re: September 2018 Chemo Starters.

Hi MamaTony, sorry to hear that you are feeling sick, it's horrible isn't it!  I had my first chemo on Tuesday 4th and have been very lucky in being prescribed fab antisickness meds which have worked really well (after the initial onslaught of chemical invaders!) Try For Emend and Ondansetron, I've been told by others that some health authorities don't give them routinely as they are expensive, but they are really good. Keep drinking lots of water and sleep when you can! I found that eating coconut water ice pops (homemade as shop bought are loaded with sugar) helped with getting extra fluid into me. 4 days in now and doing ok!  Lots of love to you xx

ktk
Member

Re: September 2018 Chemo Starters.

Sorry to hear that you are suffering with sickness. DO NOT PUT UP WITH IT!! Ring the helpline and get the meds changed. Did they give you Emend. That works well and is worth asking for.

Re Filgrastim injections. Just make sure you punch a good bit of belly fat and go in at a shallow angle. Take the injection out of the fridge half an hour before you need it. It makes a big difference and you shouldn’t feel it!! If you really can’t manage it the Community nurse will do it. My nurses were quite impressed that I was doing it myself.

Good luck. Kxx
Member

Re: September 2018 Chemo Starters.

Hi!

well last night was fun! Nausea kicked in around 5ish, was physically sick 3 times 🙁 i have back up sickness tablets which helped and sleep horrendously! Managed to do the school run and currently snuggled on the sofa lol

Hi Rhi32 sorry to hear your news x

 

Kip
Member

Re: September 2018 Chemo Starters.

Hello all new Ladies,

I just thought I'd pop a few of my tips on here, not sure if they will help but anything is worth a try.  I started chemo in June, I've had 3 x FEC and 2 x T (Docetaxol) so only 1 left to go.   The FEC does seem to come with more sickness, I found I had to keep eating little and often to help, ginger biscuits, crackers, sucking boiled sweets all helped, and it only lasted a few days for me, bit like pregnancy sickness.  I also had some strange cravings for sausage rolls and salt n vinegar crisps.   Also don't put up with the SEs phone your nurse, or help line and they have lots of other tablets to try and tips to give.  I remember the first time I called the hotline I so didn't want to but now I use it as my backup if needed, thats what they are there for.  The T part of chemo, so far hasn't made me sick at all, but has more mouth related issues, lack of taste, slimy tongue etc.   But again, speak to your helpline and they will provide extra meds for anything you need.

Sorry can't comment on icecap as didn't try it, my hair did begin shedding by day 12 of first FEC and then I had it shaved off on day 15, it was falling out so quickly and was terrible distressting but once gone, I found I could cope with it more.   Eyelashes/eyebrows have thinned a lot but not until first T.  I have a lovely wig which the NHS helped to fund and also loads of hats, scarves etc, you can find them really cheaply on Ebay or Amazon, £1.99 sometimes so you don't need to spend much.  Have fun playing around with them, its quite surprising how quickly you get used to them, and if people stare... STARE BACK!

Take care, and rest up when you need too!

Kip

x

Member

Re: September 2018 Chemo Starters.

MamaTony I would definitely call the day ward ... my first night was the worst so hopefully the sickness will ease for you today but I would still call them. I was given back up anti sickness pills just in case I needed them. There are other ones they can try which will help. Big hugs ... hope you feel better today xx

Has anyone been given filgrastim injections that they need to give to themselves for 7 days 😱 need to start mine today! Dreading it ... thought a nurse would come out to do it. L xxx
Member

Re: September 2018 Chemo Starters.

Morning MamaTony
I'd definitely speak to your oncologist nurse about the sickness. There's different drugs that you can try to help it, so I wouldn't suffer if they could try something else for you. I'm on FEC-t starting on 17th. Drugs hate me and I always feel sick so I'm expecting the same as you :-( I really hope you have a better day today and see some improvements from the side effects. It doesn't sound right about the coldcap....isn't it meant to be a tight fit for the hair follicles?! Huge hugs xx
Member

Re: September 2018 Chemo Starters.

Morning,

So sorry to hear about your reoccurrence Rhi32 that’s just awful🙁

I had my first chemo treatment yesterday a round of FEC. The actual administering was fine. However I have been feeling sick most of the time since and been physically sick 3 times. Tried fasting and drinking lots of water beforehand too so disappointed it’s not had a better effect. Typical me!!
I am wondering whether I should phone the hospital for stronger sickness tables? I have metoclopramide.

I also tried the cold capping but am not hopeful for the following reasons:
- was physical hats from a freezer which they only changed after 45 mins...thought was 30 mins max
- didn’t measure me for a hat just plonked one on and then an outer one all done too quickly
- chin strap wasn’t even tight
- I said I would spray my hair with leave in conditioner and she said where had I got that idea from and wasn’t needed?? I thought it was
- no ice in hair when the cap came off

Nurse was discouraging of the cold cap and said they didn’t have much success rate. I don’t think they are doing it properly🙁🙁

Great place to vent my frustrations!

Best wishes to all.
Member

Re: September 2018 Chemo Starters.

Hi Rhi32. I'm so sorry to hear your news that it came back. That just sucks after you've been through all that a year earlier. I'm starting a different chemo to yours but I'm sure someone on here will be able to advise on yours. A few people on here are trying the coldcap. I really hope it helps. Just wanted to welcome you on here and say hi and good luck xxx
Member

Re: September 2018 Chemo Starters.

Hello ladies,
It’s my first time on here. I’m 33 years old- I was diagnosed with breast cancer May 2017, had lumpectomy (margins weren’t clear) then had Mastectomy and was put on Tamoxifen. Oncotype score was low therefore no radiotherapy or chemotherapy given.
During my 1 year check up in June this year I asked my consultant to check an area on the Mastectomy scar that felt quite firm. After a biopsy it was confirmed that I had a recurrence in the chest wall 😩 I had surgery end of July to remove that area.
I saw my oncologist today and was told I will be starting chemotherapy in the next few weeks. I will be having 8 cycles (4 x AC and 4 x Docetaxel) anyone else been given this treatment plan? It seems such a long time to be having chemotherapy until March next year 😪 I will be trying the Cold Cap.
Best wishes to everyone 💗 xxxx
Community Champion

Re: September 2018 Chemo Starters.

Gaby, a notepad is probably enough to jot down any side effects.  On hindsight, maybe the spreadsheet was a bit overkill! Smiley LOL  xxx

 

Member

Re: September 2018 Chemo Starters.

 Hi everyone

 Thanks for the water tips, makes sense, I need to start drinking more!!

  

 Is anyone else on Paclitaxel? I am having it weekly and have my fifth chemo session tomorrow. So far my hair is falling out but I am not bald or even patchy yet.  Today was the first day I  started to wear a hat as it's got very thin but still there. I ahve been told it will definately fall out. Just wondering when to expect it all to fall out.

 

Sunbean x

 

Member

Re: September 2018 Chemo Starters.

Hi All,

Well done getting through your first one Bee ... one ticked off the list ❤️ Hope you have a good night tonight. x

I had my first session yesterday .. all went ok it was more the thought of what was happening rather than being painful. Last night I felt really sick and ached all over. Today i have just felt sick but it’s been manageable.

Tested out my new wig in public today 😱 ...very self conscious about it but all went well and no stares (or that I saw anyway!).

Well done on getting your haircut today ALittlePixie 😘 bet it looks fab x

Welcome to the group Xxxx ❤️ this forum is amazing as everyone understands ...I hope it gives you lots of reassurance and support. xx
Member

Re: September 2018 Chemo Starters.

Well done for getting thru the first round Bee. Hope you have a good nights sleep if you can.
Hi Xxxx, welcome to the group 😁
Member

Re: September 2018 Chemo Starters.

Hi everyone. First time on here today. I start EC on 18th September. Think I’m going to try the cold cap as I’m so scared of loosing my hair. I’m having my eyebrows done on Sunday with brush strokes micropigmentation. My Oncologist was happy for me to do this although he said I may not loose my brows. I’d rather have them done though just in case. I want to try and look as normal as possible as I’m sure it will make me feel better. None of my friends have been through anything like this before so I feel very alone at the moment, even though everyone is being supportive I feel they don’t really understand.
Good luck to everyone on this journey xx
Member

Re: September 2018 Chemo Starters.

Hi all!

One down five to go!!

I had nurse led ec chemo, she was really lovely. A couple of strange sensations i must say lol.

Arm just felt abit sore and heavy.Was there about an hour, Im at home now snuggled up as feeling abit cold. Abit sickly but manageable. Hope i have an ok night, will let you know x

Hugs & love bee 🐝 

 

 

 

 

 

Member

Re: September 2018 Chemo Starters.

Afternoon everyone!
I took myself off to the hairdressers on Tuesday, armed with a picture of the shortest pixie hair cut ever. I told my hairdresser why I was doing it...a halfway to being bald once treatment starts on 17th. She did it for me and didn't charge me. How lovely some people are eh? Anyways, my husband and daughter (she's 10 this month) really love it and I actually like it now. It's given me a sense of empowerment over this that we're all going through. The school run was funny.....walking through the carpark now looking like G.I. Jane. We live in a very small village, so everyone knows everyone. I've only told close friends and family, so the locals looked a bit shocked 😂
Now I've got my date through for 17th I'm feeling a bit weepy. Makes it more real somehow. Thanks for all the advice re drinking loads of water.
Lots of love x
Member

Re: September 2018 Chemo Starters.

Hi Mai7,

 

I just read your blog, which I found really helpful - and it made me cry, particularly the bit about the daffodils. So much of what you say resonates with what I am feeling at the moment. I am trying to stay strong, not least for my family, but sometimes it's the small things that catch me unawares and the tears just flow. Had a look through your tips for chemo and will defintiively try some of them. I was very impressed you created a spreadsheet for your symptoms. Not sure I'll manage to do that, but I'm sure it's worth making a note of these things. I am already noticing that my memory is not very reliable, so who knows what will happen once I've started chemo next week.

 

I had my Picc line put in today. Wasn't half as bad as I had feared. I didn't feel a thing and although my arm feels slightly odd now, I think I will get used to this very quickly. At least I won't have needles being poked in to my arm every week. I don't like needles, but am fast learning to cope with all sorts of unpleasant and mildly embarrassing procedures.

 

I have also been told to drink lots of water and am trying to build up my intake - got myself a new water bottle that has a "well done!" marker for when I've finished. Pretty daft really, but oddly enough I am getting slightly competitive with myself about reaching that marker.

 

I've had a look at the scarves and hats on hipheadwear - has anyone tried their things? They're not cheap, but look well made and easy to use.

 

Gx

 

Community Champion

Re: September 2018 Chemo Starters.

Ladies, the baldness anxiety is understandable, it's a no-choice style imposed upon you.  My kids didn't want to see me bald, they wanted me to still look like Mum.  I wore a wig and if it was a windy day I'd wear a newsboy cap over my wig as it felt better hanging on to the peak of a cap than my hair!  You'll find your comfort zone with hats, wigs, scarves but it will take a bit of time in front of the mirror experimenting with "looks".  My hair grew back exactly the same colour but is now a bit curly whereas before chemo it was very straight! 

 

Kip is right about the water: it plumps up the veins which makes canulation easier and helps your body to cope with the chemo toxic load and also, with the FEC, it flushes your bladder out as you can wind up with severe bladder irritation.  I always went for a wee straight after my FEC, before I left the hospital, as that first wee was really red and I didn't want that concentration sitting in my bladder too long.   For anyone that hasn't seen my blog yet it's here and has a list of tips for chemo which worked well for me.  http://lifeafterlola.com xxx

Member

Re: September 2018 Chemo Starters.

I found out from the girls on this forum so just incase you haven't been advised by your team..... you are entitled to free prescriptions for at least 5 years.  I got a form from my gp.

Member

Re: September 2018 Chemo Starters.

Hi sunbean, with regard to drinking lots of water.
As someone has already said it makes it easier for the nurses to find a vein & less painful if your veins are nice and plump. I had a portacath so that didn’t matter for me.
I suffered awful nausea (was never actually sick) on FEC even though I was on the wonder drug Emend as well as granesetron and metoclopromide*, one of the ladies in my group had the same chemo but sailed through with barely any nausea, she swore it was due to all the water she drank. On the 2nd cycle I made sure I drank at least 2lts the day before the day of and the day after and pleased to say it made a huge difference, many of the other girls did the same with the same result.

*was switched for cyclizine as it turned out I was allergic to metoclopromide.