October 2018 Chemo starters

[MoDo]

Having a really bad day, cannot stop shaking, I'm becoming obessessed with the chemo treatment.

Feel traumatised by it all.

Need some help with this. 

Haven't been able to concentrate on anything since appt yesterday.

Oncologist said to try at look at positives, suffer with anxiety/depression for years so thinking is warped already.

[ktk]

Hi MoDo. I finishe my final T yesterday 😁 and am due to have rads next. I am also having bisphosphonates starting in November. These are just to strengthen your bones to protect from the longer lasting effects of chemo and menopause.

Aneebel, don’t worry about the chemo. It is very doable. You will be monitored throughout and can ring the help line at any time night or day. If you want to your local charity can also arrange support in terms of a ‘someone like me’ person to talk to or even som counselling if you want. Why don’t you give them a buzz.

Love to all you starters. Stay strong. You have got this. Kxxxx

[Aneeebel]

Hi MoDo
Yes, it's very scary but at least you have more of an idea where you're up to with your treatment...the "not knowing" plays on your mind too doesn't it!!

I don't know what a Bisphosphonate is so I can't help you with that!

I'm going for my pre-assessment at the chemo unit this morning and having a picc line put in!!
My chemo starts tomorrow.....
(Unless I change my mind and I decide I'm not going!! 😳😳😳)

Stay strong everyone... 💗💪🏼💗💪🏼💗💪🏼💗 xx

[MoDo]

Hi - seen Oncologist today I'm  having 3xEC and 3xTax starting 24th October......Also a Bisphosphonate as long as my dentist agrees. As I'm post menopausal.

Been scared stiff by the side effects & things that can go wrong some fatal....My goodness it's scary.

[Shi]

Hi pat, I had akynzeo and metaclopromide during my 6 chemos and no nausea or anything and kept my taste buds too. Everyone is different and everyone will have different antisickness meds combos but you need to tell your teams if things aren’t working so they can tweek them to suit you personally, keep 💪💪💪they will find a combo for you 😘😘💕💕✨✨✨Shi xx

[ktk]

Metaclopromide works for me, but I only took that after I had used the high strength stuff given for the days following chemo. Have they given you Emend? If not ask for it. Good luck! Kx

[Pat73]

Hi, since posting my last blog it went down hill, on the Saturday after chemo I had no energy, was finding it hard to get my breath and felt very very sick. The Sunday was a slightly better day but not by much and by 9 p.m I was violently sick, managed to get some sleep but the sickness /nausea feeling very strong. Monday was a little better but sick again in the evening, all through this I was taking Cyclizine but have had to change today to Metoclopramide. Has anyone else had a bad time after second lot of chemo? Have any of you been taking Metoclopramide if so did they help.

[ktk]

MoDo, it will be better when you know the plan. Make sure you take someone with you. Then get ready to shop! Wigs, scarves, hats 😄. My last chemo tomorrow. It is nice to get to the end. Lots of love Kxxx

[Shi]

MoDo 😘😘😘darling, it’s ok to be 🤯🤯😳🤯😳your team at your unit will look after you and support you very well, tell them you are worried, they can recommend you can speak to a specialist support person at your hospital who can show you coping strategies also, don’t forget the bccf has the someone like me option that you can ring and they call you back and you can discuss everything in confidence too. Keep 💪💪💪💪you can do this, we’ve got that bingo chord round your waist and you might bounce but all the ladies in here will haul you back to safety always 😘😘💕💕💕✨✨✨Shi xx

[MoDo]

Got my appt for chemo tomorrow afternoon, it's not even for the treatment it's just to discuss things.

Feeling so anxious about what they going to tell me, feel jittery & so nervous. 

Not coping very well I feel so overwhelmed by it all.

Goodness knows how I'm going to be when the treatment starts.....

[Aneeebel]

ElliesMum, hope you start to feel better soon.. Fingers crossed you'll be well enough for the 21st!
Thankyou for thinking of me... I'll let you know how I get on! xx

💗💪🏼💗💪🏼💗

[ElliesMum]

Thanks for your supportive messages, Mai7 and Shi! I know this forum will be so helpful as we muddle our way through chemo.

Best of luck on Friday, Ann 🤞 I’ll be thinking of you. As it turns out, I definitely have an infection now (extra surgery last week made things worse rather than healing) and have to get implant removed today. So chemo for me has been delayed another fortnight 👎 Oh well. I will get to hear about all of your experiences and learn from you all over the next few weeks! Due to start on the 21st now.

Good luck with your first chemo session on the 10th, Helen!

😘💕xox

[Aneeebel]

Hi Mai7... Thankyou for your good wishes 💗 (I will get round to looking at your blog one of these days!) xx 💗

Hi Shi... You're right, I for one certainly feel 😳😳😳!!! (I'm not going, I've changed my mind!! 😂) 

Thankyou for all your positive vibes and advice....

Where's the bungi chord???? I'll hold onto this end! 💪🏼💗💪🏼💗💪🏼💗💪🏼 xx 💗

Hi Helen.kenn...i had a heart scan a couple of weeks ago, I have a pre-assessment on Thursday, start chemo on Friday! I will be having 6 x TCH and Pertuzumab (if I've read that right on my paperwork!! 🙄)

Get hold of the bungi chord! 💪🏼💗

Hope everything goes well for you, would love to know how you're doing xx 💗

Love Ann x

💗💪🏼💗💪🏼💗💪🏼💗💪🏼💗

[Shi]

Hi 💪💪💪Oct 18 ladies, you will probably be in 🤯🤯🤯🤯😳😳😳😳mode right now, please know we are all here to help you through 👭👭👭😘😘😘you will do it, hold onto each other with a big bunji chord and bounce and 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Your way through. Take your meds as instructed by your units, if they don’t work for nausea ring your units and tell them, they will tweak them till they get you on right combo. Keep check on your temperature during chemo and for anything even if you think it’s nothing, phone your unit rapid response number and speak to them, it’s all about getting through safely and you will ❤️❤️Because you are 💪💪💪💪and beautiful and amazing. I was on oct17 Chemo thread and we were all slightly 🤪🤪🤪🤪during our chemo train journey but we made it and you all will too, keep focused. Oh yes, silk pillowcase is gentle on head if you are not planning on cold capping, if you don’t your hair will start to shed after 1st t around day 14, most of us buzzed hair off to grade 1 at this stage and had wigs at the ready (turned out to be like a nice warm hat during the winter) so bonus 👍👍oh and warning for any shopaholics the steroids will have you online shopping at all hours 🤣😂🤣😂🤣and also talking to each other on here at all hours 😁😁💕💕✨✨✨Shi xx

[Helen.kenn]

Heart scan tomorrow and a meeting with the chemo team to find out how it will all works then start 3xEC and 3 Docetaxel  on the 10th. 

Wasn’t expecting chemo until my oncotype score came in at 37 so here I am

hello all, we’ll help each other through this !

[Mai7]

Hello Ladies, I just wanted to wish you all well as it's now October and the start of your chemo.  I had 8 rounds of FEC-T and finished a year ago.  For anyone that hasn't seen my blog, here it is with lots of ideas for coping with side effects (you may not get as many as me though so don't worry!).  http://lifeafterlola.com  If you want to ask any questions about chemo to experienced matriarchs (lol) just post them on the earlier threads and others will be able to help (I'm on 'May 2017 starters' and we are a friendly bunch). xxxxxxx

[Aneeebel]

ElliesMum,

Oh no!!! How disappointing for you...

Fingers and toes crossed for you and hope all goes well xx 💗💗

[Aneeebel]

Hi KtK

Thanks for the info... They weighed me and measured my height last week when I went to see the oncologist! I'm having a picc line as my veins are awful! They also asked about my family history...explained the side effects etc

Hope your chemo isn't too bad and you're getting back on your feet.... Thankyou so much for getting in touch xx

💗💗💗💗

[ktk]

It is the fear of the unknown, as well as the shock of diagnosis. You will feel better once treatment starts and your chemo unit will be very positive and look after you well. If you have a local support charity do get in touch. There is lots on offer to make you feel better, and you should defiantly sign up for a Look Good Feel Better session. If you haven’t filled in the form from your GP for free prescriptions, make sure you do!! Keep asking questions and accept all the practical help you can at home. Kxx

[Sue C]

PS. Even if you cold cap, you will lose some hair. I wouldn't bother colouring at the start.... X

[Sue C]

Hi Modo
Seems oncologists differ from order of treatment, and hospitals too. I had invasive lobular as well. Didn't have ct before surgery and then the lump turned out larger than expected, so that's why they did tests afterwards.
The tests and waiting for results are definitely the worse part of it all. Chemo can be daunting, but not nearly as bad as you expect. And I was pleased to get the radiotherapy underway because I was doing something positive to get rid of it all.
It is all very traumatic, but that will ease over time.
Sue xx

[MoDo]

K - I'm considering the cold cap, will wait until the appt to decide.

Thank you.

[MoDo]

Thank you ElliesMum  xx

[MoDo]

 Hello K,

Thanks for reply.

I'm trying to trust the experts (getting better) it's my panic not the team, it gets the better of me.

GP hopefully going to give me something to try & calm me down.

Fears are overwhelming me.

 I think it's more the not knowing than the actual reality I'm OK for a while then anxiety back ten fold...😯 xx 

[ktk]

MoDo, you can colour now but you might not want to waste your money! If you don’t cold cap you will lose your hair in two weeks!! Kxx

[ElliesMum]

Hi MoDo, I’m so sorry that I can’t offer any answers for you, as I’m not a medical professional and only have my own experiences to go by. It’s all a bit scary and overwhelming, isn’t it! It sounds like you need to have a good chat with someone from your medical team. Could you call your breast care nurse on Monday morning, so you don’t have to wait until you see the oncologist on Wednesday?

From what I understand, the chemo regime you are recommended depends on lots of variables that your team will weigh up in deciding on the best plan for you. I haven’t had any extra scans since surgery, but will have an echocardiogram on Tuesday (as FEC and herceptin can cause heart damage).

I’m off for a brisk walk in this lovely autumnal weather to clear my head and get some fresh air. Xox

[ktk]

You probably won’t have another ct until rads. I didn’t. FEC isn’t too bad as long as you keep up the antisickness meds. T is a bit harder and some people can’t tolerate it so instead of 3 x T they have either a different drug or a lower dose, but more cycles. Your oncologist will explain what is best for you and you will be closely monitored at every stage. Trust the experts!! Kx

[MoDo]

Hi Sue,

Thanks for reply.

I had CT scan before surgery will I still need one ?

I have invasive lobular with lymph glands involved, had lumpectomy & ANC.

Im actually terrified of any more tests & the Chemo itself, spending most of my time sitting traumatised by it all. x

[Sue C]

Hi Modo
The chemo that you have, depends entirely on the type of bc that you have. The common one seems to be 6 cycles of Fec T. But there are lots of variations. I had 4 cycles of TC so very different.
You're appointment will be to discuss this, plus organising any other tests that may need doing. I had a ct scan and a bone scan just to check that all else is clear. Luckily, that was fine.
I can't help with hair colour, but I'm sure someone will be along soon. Or you could ask the question either in the Chemotherapy section, or Ask the Nurse.
Best wishes
Sue xx

[MoDo]

Hi ElliesMum,

Do you have any idea as to how they decide how many cycles of chemo you have as I've seen ladies have 3,4,6,8 - plus how do they decide between FEC & the other one T ?

Also at first Oncologist Appt do they give you any other tests or is it just a chat about treatment ?

Just by chance I have arranged on same morning of Oncologist Appt have hair cut short & have colour put on it, is it OK to have colour put on ? Or should I cancel the colour on it.

Sorry to ask so many questions but worried about everything & don't know anything...feel quite lost about it all.

Thank you.

[ElliesMum]

Aneeebel I definitely don’t want any more delays either - we’ve had to cancel a holiday to visit family in Australia (booked for late October) because the oncologist insisted that I start chemo ASAP. 😞

The sooner it starts, the sooner it’s over!!! 👍 xox

[ElliesMum]

Ktk you’re spot on about the pre-chemo assessment, but I also had my surgery wounds checked to ensure they were sufficiently well healed. That was my issue; one of my wounds (the drain site) still hadn’t healed properly. Had another quick surgical procedure to cut away some of the affected area and stitch it back together on Thursday (27th Sept), given lots of antibiotics, and hopefully I’ll get the all clear to start this week 🤞PICC line insertion is booked for this Thursday (4th), first chemo on Friday (5th).

Good luck with your oncology appointment, MoDo, and with your final round of chemo, ktk! Yay! 💐
😘 xox

[ktk]

Hi Aneebel, and the rest of you lovely October ladies. Sorry you have found yourselves here, but this forum will give you loads of support and remind you that you are not alone.

I am from June, and just about to have my last chemo on Wednesday 😁😁😁. 3 FEC, 3T. At the assessment the will measure and weigh you to get the dosage right. They will ask about your family history and explain what will happen. They might talk to you about having a Picc line, depending on your hospital’s regime. This is put in your uppe arm and stays for the whole time. Bloods are taken and chemo delivered through it. It is completely painless and saves them having to find a vein in your hand every time. They will also talk to you about side effects and if you want to cold cap. Finally they will agree a date to start treatment.

Hope that helps. Please feel free to ask anything. Good luck ladies. Kxxx

[Aneeebel]

Hi ElliesMum

Oh no, how frustrating for you! What do they "assess"? (If you don't mind me asking!) 

I'm having my assessment on Thursday, I don't want my treatment delayed...I've phyched myself up for it now! 

Hope everything goes well for you during your treatment

please keep in touch, it would be lovely to know how you're getting on xx

💗💗💗💗💗

[Aneeebel]

HI MoDo

When I asked my oncologist when my treatment would start she said "a couple of weeks" but I pushed for it sooner... So hopefully you'll find out when you go on Wednesday! 

The waiting is awful isn't it! It could tip you over the edge! 

Thinking of you X 

💗💗💗

[ElliesMum]

I’m starting on the 5th of October too, Aneeebel! 🙋‍♀️

I was supposed to start on 28th Sept but failed my pre-chemo assessment 🙈 Hopefully good to start this week. I’ll be having 6 cycles of FEC-T with herceptin from cycle 5.

Good luck to all starting chemo this month! 😘💕🤞

[Aneeebel]

Hi.... 

I will be starting my chemo on the 5th October! 

Chemo every 3 weeks for 6 cycles -I'm not sure if this is the norm! 

(I've changed me mind.... I don't want to go now!!!! 🙄🙄)

Best wishes to everyone xx 

💗💗💗💗💗💗💗

[MoDo]

I've got appt with Oncologist Weds 3rd October, not sure how long from appt treatment will start but assuming it will be soon.

Obviously don't know which type or how many but extremely nervous of what's to come.

Have wrote down tips I've seen on here of what to take with me - had a shock when hospital phoned me today with appt.

I don't go back to see Consultant until 10th October !

[Sue C]

Hi Ladies
This thread is for anyone who is starting chemo this month. I hope you can all help and support each other through this difficult time.
Please ask if you have any questions.
Sue xx