January 2019 chemo starters

[Kip]

OOoh just remembered... I didn't mention "constipation"... I found the steroids caused constipation..drink lots, eat fruit (dates/figs on your breakfast) if you can also I took lactulose (recommended by Oncology nurse) in the evenings for the first few days.  Once steroids were over it was back to normal.  Some ladies find the chemo has the oppostie effect, so worth having some Diacalm in ready just in case. 

Kip

x

[Kip]

Hi MMJJ,

I understand your worries about how quickly you will be back to eating cake.. I can assure you even with a lardy mouth and no taste buds I was still eating cake!!

I found with my first FEC treatment, I felt fine for the first 4 days, then on the 5th day I was a bit tired and had a little bit of a sore tongue which stayed around for the next few days.  By day 8 I felt ok again and was fine until the next treatment.  The part I always found difficult was when I finished taking the steroids ( I think that is about day 5 after treatment with FEC).  I would always have a downer as I came off of them and would be a bit weepy and fed up, but after a day or so I'd bounce back.  Look out for the steroid downer!  The FEC treatments pretty much followed the same pattern each time, if you get a sore tongue/mouth the hospital told me to rinse with salt water (I tried to do this regularly throughout the day especially after eating) and they also gave me Difflam mouth wash (you can buy this over the counter) and that helped too.  Nip it in the bud as soon as you can... ring that helplie and they will give you as many meds as you need.  Generally the SEs I had from FEC where on par with pregnancy sickness, I took the as and when sickness pills they give you a couple of times a day for the first couple of days and then it went.  I found I wanted to eat more to stave off the sicky feeling, sausage rolls and salt n vinegar crisps seemed to be what I craved.   Just eat when you can and whatever you feel like, my nurses said its no time to be dieting, just get through it.

I didn't mention before as its quite a big deal but the hair loss... mine started day 12 after my first chemo, by day 15 it was going big time and I had to brave the shave.   Its a bloody big deal when you are going through it (or was for me anyway) but once its gone, its gone and you move on and deal with it, on a happier note, by chemo 5 my hair was growing back and is now full covering, quite thick and about 1inch long (you can see it on my photo.. although it is grey!)  If you feel your head/hair tingling thats the sign is starting to shed.   Lots of us on June chemo thread posted our baldie photos if you fancy a look.

I hope this helps, Im sure you'll be eating that cake!

take care

Kip

xx

[MaMa JuJu]

Thank you so much Kip for the info, I already have a box with bits and bobs in it but I can now add to this with your suggestions. I know everyone is different in how they respond to the drugs but how long did it take for you to get over the main side effects of your first chemo? It’s my birthday on the 13th of January and I am hoping to enjoy a bit of birthday cake 😊 if my taste buds let me. 

D, welcome to the January club. I hope you had a lovely New Year. 

Like G says, I just want to get the first one over with but it really isn’t long now. 

All the best,

MMJJ XXX

[G]

Thanks for taking the time to share all of this Kip. I just want to get to Friday and get on with it all but glad I have a few days so I can stock up on some of the useful things u mentioned!
So pleased your are a long way on in your journey and are in such a positive place, well done, Cheers, G x

[Kip]

Hello Ladies, sorry you find yourselves here but am glad that you found this place.. .its invaluable!

I started my chemo in June 2018 and finished my last one on 24 September 2018.  I had 3 x FEC and 3 x T (Docetaxol).   You seem to have found lots of tips and hints already but here's a few more...

Drink plenty - especially the day prior to chemo, the day of chemo and the day after ... this helps to keep the veins nice and plump too!

Eat what you can when you can, I kept a box of ginger biscuits, crackers and boiled sweets with me always, just something to nibble on if you feel nausea.

Pineapple (tinned) is great when you have dodgy taste buds.

Frozen lollies or frozen fruit also good for sore mouths.

When I had a really bad "lard tongue" the nurse suggested getting Vit C tablets (the kind in a tube which you dissolve in water) and let 1/2 of one dissolve on your tongue, certainly gets the mouth buds tingling.

A spoon of Manuka honey a day.. lots of ladies swear by this!

Take all the medications given, and if something doesn't suit you or help at all, don't hesitate to call your chemo hotline.. they have lots of medications in their arsenal and everyone reacts differently.  Never be afraid to call them.

Take your temperature regularly... always take it before taking paracetemol.. and call the hotline if it gets too high.

REST... sounds simple, but listen to you body and take it easy.  BUT also if you can exercise a little, just a little walk around the garden will lift your spirits!

Anti sickness travel bands.. I used these and didn't suffer very much with sickness... a bit of "morning sickness" feeling sometimes but not sure if the bands helped or not.. but I kept them on incase!

Keep a diary of how you feel each day, the chemo SEs usually follow a pattern so you should see how you will be feeling for the next cycle and can plan some treats around the worst days.

Don't take your steroids after lunchtime,... they stop you sleeping at night!!

Most importantly.... come on here and ask questions, moan, groan and let it all out.   I am on the June Chemo 2018 starters forum and if you go on there you can follow our whole journey through this and out the other side.

Chemo isn't nice... but it isn't unbearable either,  some days are down.. but you do get good days too.. I worked through mine, albeit part time and at home but still managed it.

Take care...

Kip

xxx

[DebsE]

Hi MMJJ!  

That makes 5 of us so far going into battle in January.  You're mostly all starting on 4th but I'm a little behind you on 7th.  I'm lucky that my husband is retired so can run me to and from the hospital.  I didn't realise, until I was going through all the "bumph" they gave me, that Taxol has alcohol so could make me over the limit for driving.

I hope you all have a fab New Years Eve.  I plan on eating a lot of pate and blue cheese while I still can!

D

[MaMa JuJu]

Hi G,

Yes I am the same but not long now 😱, it will be here before we know it.

Absolutely, it will be great to catch up.

Thank you, I will have a lovely night and will catch up with you in the NY.

Let the battle commence 🥴!

MMJJ xxxx

[G]

Hi MaMa JuJu, You seem to have a really positive attitude to everything in your post, glad the holiday season has been good to you and enjoy NY Eve 🥂 Looking forward to catching up over the coming months - we are having the same drug combination so this maybe useful going forward. I just want it to start now to be honest, I am better getting on with it than the build up!
Take care xx

[MaMa JuJu]

Hi All,

Just introducing myself as I am new to this group.

I also start my chemo on the 4th of January; 3 x EC and 3 x Taxol.

Starting to get nervous now but that’s to be expected. 

I have had a wonderful Xmas spending it with family and friends. Planning to have a fab New Year and then it’s time to start the 2nd part of my journey.

Looking forward to catching up with everyone when your treatment starts. 

Take care and speak soon xxx

[G]

Poorlyness is most def a word D!!! 😉
I have thin long hair so think I am clutching at straws but going to give the cold cap a go. I don’t look great in hats but will def take a look at website, thank u! I have a wig appointment for following week after chemo so will see how that goes too.
Hope everyone having a restful few days xx

[DebsE]

Thanks Sunnydaze, it's brilliant to read such a positive post.  You're right, it's fear of the unknown that gets us.

G  - I'm coldcapping too.  The nurse said, with the thickness of my hair, I have an 80% chance of keeping it so fingers crossed.  Just in case, I've bought a couple of beanies from a brilliant website called Hats 4 Heads.  Lots of lovely styles and good prices.

I'm still suffering from the cough and cold I developed after the flu jab.  My husband's just about to go up to stay with his family for the New Year but I've decided to stay at home.  I think it'll do him the world of good to be away from all the stress and my poorlyness (is that a word?)

D

[Sunnydaze]

Thank you xx

[G]

Well done sunnydaze, that is brilliant news! I hope tomorrow and the next few days continue to be kind to you 🤞

[Sunnydaze]

Hi everyone
I had my first chemo today and it was a positive experience. The build up and anxiety beforehand was probably the worst. I have been prescribed double doses of anti sickness medicine and so far it is working well and I have managed to eat roast chicken dinner tonight. Goodness knows how I will feel when the feel good drugs wear off, but tonight at least I feel good.
Take care ladies. Fear is half the battle and no matter how bad the day is, there is always something positive to be found, even if it’s only tiny.
Love 💖to you all, Sunnydaze xx

[G]

Just had a similar conversation...this time next week....eek! I would rather it be here now to be honest, I am not good with waiting.
I am having 4x EC (epirubicin & cyclophosphamide)
and 4x TAX so I guess we will have different experiences due to different drugs but emotionally with you all the way!! Looking at everyone’s post so far we are all different. Anyone else noticed if on similar combinations to anyone?
Also is anyone else cold capping? I am going to have a go as have two girls who are very scared of seeing mummy with no hair but I am under no illusion that it is not a miracle worker😏

[B74]

And hi G - what treatment are you having?

I'm getting 4 x AC (doxorubicin & cyclophosphamide) then 12 x Taxol. I can't believe it's only 1 week til we start (eeeeek)

[B74]

Good luck Sunnydaze, I'm thinking of you today as you (suddenly!) start treatment. I know you're now really in the "December 2018" group, but let us know how you go. 

[Sunnydaze]

Blimey, I am now starting my chemo on the 28th December. I think due to my long delay in surgery, they didn’t want to delay my chemo. My protesting finally worked. Now I’m in a bit of a panic about starting chemo, not knowing how I will be on this unknown journey. At least now it will finish sooner. 3x FEC and 3xT.

[Sunnydaze]

This is quite useful. Again American skin care products, but definitely a few inexpensive products here that I may find useful.
https://www.self.com/gallery/skin-care-products-to-use-during-chemotherapy

[G]

Hi B74 and everyone else! A bit late to this thread as only found out on Wednesday when I would be starting and snap we are chemo twins as I too am starting on 4th of Jan. I had my first op on 30th of Oct and then needed a mx 28th of Nov with a tissue expander for now.

Look forward to learning, sharing and smiling with you all over the coming months!

[B74]

Hi Sunnydaze, wow that’s a really long wait for surgery, how horrific! I can understand you not wanting to wait a moment longer. I am also really interested in nutrition & will check out the dietician on Facebook and the cookbook you recommend (I’m a bit of a sucker for cookbooks!!), I already bought “The Cancer-Fighting Kitchen” by Rebecca Katz which has some really tasty recipes (I’ve already tried some). It’s not totally plant based as some people recommend (she includes chicken & eggs for example), but I’m vegetarian so I just ignore the chicken recipes. I’m also planning to fast 48 hours before & 24 hours after each infusion of AC - it’s not for everyone I know but is meant to help a lot with reducing side effects (protecting healthy cells) and maybe increasing the effectiveness of the chemo.
Anyway we’re currently on our way (1.5 hours into a 6 hour drive!) to spend a week at the in-laws, and I swore I was going to put thoughts of chemo aside for a few days to enjoy the break, but here I am still reading the forums! 😊

[Sunnydaze]

Hi Ladies
Thank you for your replies. Loved the link to your blog Mai74. Thank you for posting. Invaluable tips! I wish you nothing but the best on your road to wellness. Thank you also B74 for starting this thread, I hope we can get to know each other a little more.It sounds like you read a lot too and have really organised your self. I really now must do the same.
I met with my Onc today and hopefully I will be starting the dreaded chemo in early January. I had to push for this because they were suggesting mid Jan and Chemo is more effective if given as early as possible. I had to wait a Massive 105 days to surgery. Not good.....and now I need chemo. I wonder why????😥! Nothing to do with the delay of time to surgery they tell me 😦 yeah right! Welcome to NHS Scotland...
So, today I managed to secure a meeting with the chemo nurses for a pep talk on Monday and hopefully a heart scan very soon after Christmas and Chemo hopefully very soon after that. The Onc gathered that I would not tolerate any further delay given my delay to surgery . It’s a shame I had to threaten them with contacting my MP to bring my chemo date forward. Anyway, I don’t want to have to do this. I want to put all of my energy into getting well again.
So here we are and I am trying to be as positive as possible between the tears ! I am looking after myself as well as I can . I am glad we have Christmas to enjoy ladies, something good to focus on.🎄
I am interested in nutrition and I follow an American Nutritionist on Facebook called Cancer Dietician, Cancer Services. I find her information to be very interesting and really worth listening to some of her webinvars. Good sensible information. She busts lots of myths and is both practical and realistic about healthy eating through cancer and beyond. I recommend if you’re interested.
I also have a cookery book which has lots of recipes called eating through cancer. The recipes are based really for an American palate, so not things we would automatically cook, but loads of brilliant information on things to eat through nausea, sore mouth etc. I think this book will be useful both to me and those cooking for me over the coming months. One of the recommendations was to use this mouth wash after every meal to help with a sore mouth. I teaspoon of bicarbonate of soda, a wee bit of salt all dissolved in water, so I might well try that to preserve the old gums.
In the meantime ladies.
Enjoy your Christmas the best you can.
Love and light Xxxx

[B74]

Hi Sunnydaze and DebsE, I think that makes 3 of us now starting in Jan.

Kc72 - thanks for the reminder about the 12 weeks guideline, I think I read that a while ago but had forgotten.

Sunnydaze - I’m sorry about your pathology result and finding out you need chemo. My report wasn’t a surprise & I was fully expecting to need chemo, but still burst into tears when they confirmed it!

DebsE - good that your nurses were lovely, that has got to help when it comes to starting treatment.

My info session isn’t until the 28th. In the meantime I’ve been doing way too much research - side effects, all the hints & tricks, preparation & packing lists, & have gone & stocked up on all kinds of stuff (Biotene toothpaste, soft toothbrushes, moisturiser, scarves, waterproof mattress protectors... you name it). It’s almost like I’m preparing for the end of the world! I guess we all have different ways to deal with the anxiety. I wish though that I could just forget about chemo for a couple of weeks and enjoy myself.

[DebsE]

I'm new here too.  I start my chemo on 7th January - Taxol for 12 weeks and 3-weekly Herceptin for a year.

I went for the talk at the hospital this afternoon and came away with so much info to read.  The nurses were lovely and kept trying to feed me lemon cake.

I had my flu jab last Saturday and have developed an impressive cough.  Fingers crossed it's gone by Christmas.

[Sunnydaze]

Hi
I am new here and due to start Chemo in January. Hello all January chemo starters 😥. I had a diep flap with immediate reconstruction on the 20th November. Unfortunately my pathology report was worse than anticipated and I now have to have chemo. I am still healing from surgery but hope I don’t have to wait until mid Jan for Chemo, early January would be better. Delays can be detrimental.... looking forward to connecting with you all during this horrendous journey. I guess I am looking for any Chemo tips, what to put in the freezer in advance and is it a good idea to get a juicer?
Happy/sad Christmas ladies. X

[kc72]

Hello B74. I’m in Dec chemo thread. I had my op end Sep and started chemo just over 10 weeks. I’d read/heard the guideline is before 12 weeks post op, so at 8 you’re well within. Know the waiting is tough when you just want to get on with it but enjoy your Xmas and New Year. Best wishes KC72

[Catlady37]

Hi B34 I'm starting chemo before I have surgery so that maybe why some people are starting chemo before you.  I have had to wait to start treatment as have had to have lots of tests and scans etc I think the waiting is hard when you just want to get started. On the bright side at least you can enjoy a nice christmas dinner ☺️ x

[B74]

I’ve been reading the Dec 2018 thread and all the ladies diagnosed way after me who have already started chemo, & I’m not starting til Jan. I’m beginning to feel worried about the delay (while also kind of grateful to have a normal Christmas). Is it normal to wait 8 weeks after surgery to start??

[Catlady37]

Thankyou Tili ☺️ I hope you have a good Christmas too x

[Tili]

Hello Catlady37, lots of love and have a great Christmas 👍

[Catlady37]

Hi I'm new to here too, I'm starting chemo on Friday 21st so before Christmas just wanted to say hello ☺️

[Mai7]

B74, glad you found the blog and found it helpful.  Pasting links on this forum sometimes works and sometimes not but googling "lifeafterlola" delivers the result anyhow.  It works if you copy it into the browser.  Best wishes. xx

[B74]

Gocat - maybe you can be the expert / ‘old hand’ in the Jan group!

[B74]

Thank you all. I got to the blog by deleting the extra characters that appeared at the end of the address. Lots of helpful info there, thank you.

[gocat]

Link not working Mal

Im starting FEC 27th December, so nearly a January starter.  

[Mai7]

Hi B74, I'm sure there will be others joining you soon.  In the meantime here is my story which has lots of tips for getting through chemo which I collected from chatting with others on this forum along the way:  http://lifeafterlola.com maybe you can get ahead of the game and be ready to pass on some ideas to others as they join the thread.  Please feel free to reshare my blog if you have found it useful.  I do wonder this time of year whether women are less likely to check their breasts and/or put off going to the GP until after Christmas.  I finished 8 rounds of chemo a year ago and I'm pretty much back to "normal" again now.  Just like Rosie, I also keep in touch with my chemo buddies.  It's a very special friendship.  Best wishes to you and I hope you have a lovely Christmas and New Year. xxx

[rosie14]

Well done for starting the thread!  I am sure that you will soon have other ladies join. It’s such a great support as you go through the highs and lows and only ladies going through chemo and other cancer treatments really understand how you are feeling! 

I am part of the April 14 thread and 5 of us are still posting and have supported each other not just through chemo but surgery and radiotherapy! We meet up once a year for a reunion! 

At least you have got Christmas and New Year before you start your treatment, have a good one! 🎅🏽🥳

[B74]

I don't think anyone else has started a Jan '19 thread yet so I will.

Just found out I'm starting chemo (4 x AC then 12 x T) on 4 Jan.

I'd love to meet others starting their new year in a similar way!