Member
Posts: 83
Registered: ‎21-10-2018

Re: Anyone starting Chemo in December 2018?

Hi MaryKamille. My hair started coming out about 10 days after the first EC chemo. I had most of it taken off. After the second chemo I just had a few bits so had that taken off so I now have none. Hair gone from other areas too 😜 lol. Not got a wig yet but think I will have to succumb x

Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Hi pastamissus

Good luck for your chemo tomorrow and hopefully it will be kind and not cause you any problems like last time.

I've had my second fec this aft. Struggled with cannula this time but managed eventually. Currently feeling like I've stepped off the waltzers after drinking a bottle of wine. Not that I've ever done that😂 I've got to give myself 10 Filgrastim injections this time instead of the usual 5(which is not uncommon with FEC I was told) due to my neutropenia last time. Oh the Joy's....

Take care xx

Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Hi maryKamille

I've decided it's the colour of my wig I'm struggling with. It's very dark brown and although I used to be this colour, for the past few years I've gone a couple of shades lighter as thought it was starting to look harsh on my ageing skin. Think I'm going to have to get another one. I don't wear anything on my head at home. Hubby, kids and grandkids don't seem to mind. We have to do what's best for us to make this journey as tolerable as possible.

Sending hugs, take care xx

Member
Posts: 99
Registered: ‎19-09-2018

Re: Anyone starting Chemo in December 2018?

Second FEC tomorrow. Been making the most of having some brain by learning how to do French knots and then finishing off a cross-stitch which needed 108 of them! Hair only just starting to come out. Hope the next FEC goes as well as the first one - no real problems except tiredness and weird dreams while on steroids.

Member
Posts: 66
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

Hi Dikat
I have today shortened the few locks of hair that remain to me. Did it myself with proper hairdressing scissors. I just can't face someone else shaving it off!
It means that my wig - now absolutely necessary and removed from the box in which it lay for about a month - fits better and less 'bits' struggling out.
Mine is a curly. blonde ear-length bob. My real hair was 4-colour foils graduating from brown to blonde highlights and was neck length.
The wig is surprisingly comfortable and I can wear if for hours and hours if I want to.
I keep my head covered at all times. Indoors I use scarves and a turban at night in bed. I don't want to look at it and I don't want my husband or anyone else looking at it either.
I wonder how long it will take before it all falls out completely? I had my last Chemo postponed but expect it will all go with the 2nd one. Anyone know?
Member
Posts: 66
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

Hi angelblue just been catching up on posts today. Even if I don't reply to anyone, I do read the posts and try to keep up.
I have the extraction this afternoon. I had the appointment for it from my emergency dentist consultation on 24th December. However, the dentist phoned me yesterday to say they needed written permission from the oncologist to go ahead! It takes that long to realise you need the paperwork?
Anyway the time frame was hopeless - which they knew - so I phoned oncology - I am always explaining things to them it seems - and my oncologist phoned the dentist himself to give the all clear. This has made me less confident in the procedure however, as it is yet another new dentist and I am now wondering if she didn't really want to do it and thus raised the issue as late as possible?
If this sounds like paranoia - it probably is a bit over the top but you feel so vulnerable all the time, don't you?
One thing that did give me a lift was chatting to the nurse at the Drop in Centre of my LOCAL cottahe hospital. She's brilliant. I asked her what all the scans were for as it had been troubling me that they keep doing them and she said -'it's a baseline measurement they want, to see what damage the Chemo DOESN'T DO.'
We had a good laugh about this phrase which we have put together as my oncologist insists that none of my problems have anything to do with Chemo! XX

Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Pleased you are feeling better this time. Fingers crossed it continues. Is it only you and I on this group that are having chemo before surgery.
Someone else said they thought of the treatment as a triathlon. Just hope we are getting the hardest part of the triathlon out of the way first! I was born in 69 so similar in age. This really wasn't what I had planned for my 50th this year.
Take care xx
Member
Posts: 29
Registered: ‎28-12-2018

Re: Anyone starting Chemo in December 2018?

I just had my second FEC and also feel much better than I did worth the first one which was vial. Worrying that I am overdoing it today but there will be less jobs tomorrow.
Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Hi Rapunzel

I will let you know how I get on with the dioralyte for the BP issue. Onc said to have couple a day so I will start today in prep for tomorrow.

Hope you are getting on ok with your wig. I've been wearing mine out but still don't think it's quite me. It's a Bob. I had it inverted at the back but still feel it looks a little too precise so might go and get it cut into a bit more. I've ordered various headwear/scarves but don't feel they suit me! Never have been good with hats. Admire all you people that rock the bald look. Maybe I'll get there, still getting my head around it all as only diagnosed 14th Nov.

Take care xxx

Member
Posts: 61
Registered: ‎11-09-2018

Re: Anyone starting Chemo in December 2018?

Hello Angelblue,

 

Glad you were able to have your chemo and that you'll get to see an different oncologist. I really feel with you and anyone else who finds it difficult to trust (some) members of the medical profession at times. Especially in a situation like the one we find ourselves in, it is hard to be one's own advocate on top of everything else, but - as someone wrote to me yesterday - when you're going through this illness and treatment, you'll find a strength in yourself you didn't even know you had before. It will help carry you through - and so will people who genuinely care and want to help.

 

All the best to you - and everyone else,

xxx

Rapunzel

Member
Posts: 61
Registered: ‎11-09-2018

Re: Anyone starting Chemo in December 2018?

Hello DiKat,

 

Glad to hear that your second FEC is going ahead, and that the lump seems to be getting smaller! Thank you for mentioning low BP as a side effect. That's definitely something I can relate to as well. Will keep an eye on it.

 

Fingers crossed for you tomorrow!

 

xxx

Rapunzel

Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Hi Angelblue
So pleased your chemo went ahead and hope you’re feeling ok? The cannula sounds grim but I know what you mean about permanent reminder of picc but guess we have to do what’s necessary. Glad you are going to change Onc. It’s so important to have a trusting relationship. Like you, I’ve had issues over health problems in the past which has unfortunately led to mistrust and left me with health anxieties. Hope this cycle is kind to you. A third of the way there for this part of the journey. Take care xx
Member
Posts: 56
Registered: ‎09-11-2018

Re: Anyone starting Chemo in December 2018?

Hi Marykamille - if I recall correctly it was your extraction yesterday??? If so I hope it went well and you're feeling ok xxx

Member
Posts: 56
Registered: ‎09-11-2018

Re: Anyone starting Chemo in December 2018?

Hi DiKat

 

That great news that you're going ahead for wednesday - fingers crossed. Its extra stress and worry when its delayed. And its good news you were able to have a good conversation with your oncologist...and brilliant news that your lump is shrinking.

 

My chemo went ahead yesterday!! The on call registrar decided to do bloods first due to previous low blood count and as I was still on the stronger antibiotics. That meant an additional 2 hour wait but I didn't mind. Luckily all was ok and went ahead. I had an inexperienced nurse try to put in the cannula. It was awful. She didn't do it right, it was so painful. Due to my complete phobia of canullas I was incredibly upset and asked for the nurse I'd had previously to do it. It still took another 2 attempts though as veins withdraw after first attempt. They agreed that I should potentially have a PICC line due to how distressed I get with Canulla - but then I don't know how I'd feel with something permanently there. I'm maybe going to see how my hand/veins heal this week first. More good news is that I spoke with someone about changing oncologists and it seems very straightforward. We've agreed I'll call later in week to discuss this as with yesterday being my chemo I needed to focus on that.

 

Love to you all, I hope everyones getting on ok xxx 

Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Hi everyone

Just seen my onc consultant and feeling more positive. Glad I had made my list of questions and side effects. Despite my neutropenia from chemo 1 (FEC) he was going to keep me at full dose but when I informed him of all my other side effects, mainly my low BP, nearly passing out on chemo day and generally feeling spaced out, he has decided to reduce by 20%. I had mixed feelings about this but felt a bit more reassured when he examined my breast and said he can already feel a reduction in my lump so feels I am responding well. He also advised me to start using mouthwash as of today, prior to my chemo on Wednesday, to take a general multivitamin because this will support the filgrastim to do it's job (this is due to me not eating very well from nausea I experienced and the sore mouth) for people having a normal healthy diet this wouldn't be necessary but probably wouldn't hurt to have an extra boost. He also told me to take dioralyte to help increase my BP. I have a naturally low BP and he said the chemo and combination of drugs afterwards can lower BP so not great in my case. He also reassured me that my raised liver bloods were nothing to worry about, again down to the chemo and antibiotics I'd had. So, all being well chemo 2 on Wednesday....I CAN DO THIS! Hope everyone else finds some of this info useful.

Angelblue, fingers crossed for you today and how is everyone else doing who started in December?

Xx

Member
Posts: 67
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Thanks for your comment Lynne48. It’s useful to hear that others struggled with their first FEC but didn’t necessarily struggle as much with the subsequent ones. I will definitely be on the ball this time if my throat starts to get sore like last time. At least I feel better prepared for things. Thank you x
Member
Posts: 83
Registered: ‎21-10-2018

Re: Anyone starting Chemo in December 2018?

Hi Angelblue. Just read your last post. I know what you mean about not trusting the medical profession and I used to be a nurse! I think it’s appalling how different areas vary with care. There should be national standards. I’m going wig shopping soon. My hairdresser advised Trendco which is near where my sister lives. He can style it for me as well.
Member
Posts: 83
Registered: ‎21-10-2018

Re: What care/monitoring are others receiving from oncology??

Hi Angelblue. My next chemo is on the 14th January all being well. Funny how we kind of look forward to a chemo session! I hope you get your chemo sorted. 

 

It’s a nurse led clinic 2 days before the chemo. I see one of the Sisters. They do pulse, bp, temp and weigh you. Ask me questions which they input the answers as it goes over to the Oncology Unit which is a few miles away. They want to know re nausea, pain, sleep pattern, how you are emotionally and  mentally. The chemo support worker changes my PICC line dressing and takes bloods. I was pretty upset last time so they got the Chaplain to come and see me on chemo day. I’m not religious but he’s pretty good. They have counselling skills don’t they. All the staff know that I’m on my own at home. 

 

I have to say when my husband had cancer 8 years ago, it wasn’t as good. So far so good apart from a small hiccup but I’m doing some meditation which keeps me calm. Well most of the time lol.

Member
Posts: 56
Registered: ‎09-11-2018

Re: Anyone starting Chemo in December 2018?

Hi Rapunzel

 

Well done on being so brave today. Its a big deal. I'm really glad you're feeling happier now that your hairs cut and you've got your wig sorted. I think its a big step psychologically and like you say it gives you some control over this process. If my chemo goes ahead tomorrow I'm thinking of shaving my head on Tuesday or wednesday.

 

Thanks for the info re the level of care/monitoring your receiving. Like I said before it does seem that most people have someone within oncology to check in with on each chemo cycle. I really feel short changed! As well as asking to change oncologist I'm thinking of contacting the PALS (Ithink thats what its called!!) at my hosptial with my concerns. but its just an added stress when you're trying to get through chemo!

 

I've also been referrred to the psycho-oncology service and have my first appointment 18th Jan. I think this will help! I was referred by a breast care nurse after surgery when I was first insisting on the Oncotype DX test - which they all said I didn't need. I was told I was 'being silly' for insisting on it  (but in the end it showed I wasn't low risk as I'd been told but high risk..so not so silly after all!!). I have anxieties which go back to when I had Guillain Barre Syndrome. I was really ill before anyone medical would take it seriously and have a distrust of medical profession which has been exascerbated by the current situation!

 

Let me know how you get on re your chemo change

 

xxx

Member
Posts: 9
Registered: ‎04-01-2019

Re: Hi everyone

Hi DiKat I found my first dose of FEC back in 2011 horrible with lots of sickness and constant nausea. I was dreading going through the same on the second but it was much better and the 3rd one was better still. But I needed lots of antibiotics throughout my treatment mainly for sore throat and I just had to ring the doctor and they’d do a prescription for me to collect so I didn’t have to sit in a germ filled waiting room. Good luck with your next dose.