I have just had my dates through. Was hoping to start after Xmas but no such luck! I start on 10th December and have a pre-Chemo group session on 7th December. Absolutely dreading it although I know they will talk it up on 7th. So many concerns, but everyone keeps saying we all react differently to the treatment (and the treatments are varied anyway - mine is for BC), so you don’t really know until you start!
Hi Mary, I have meeting with Oncologists on 7th Dec, I don’t know when I start yet but I’m hoping for after Christmas too. I booked to go away for Christmas just before I was diagnosed. Hope all goes well for you, I’m very worried about it all too. It came as a shock as I was expecting Radiotherapy and now I’m having Chemotherapy too!
Hi Mary. I’m in the November group and had my first chemo on 16th Nov so will check in on both Nov and Dec groups. I know, like you, I found it really daunting before I had my first one but found reading the posts on the November group from those who had already started really reassuring. It’s good to know we’re ‘all in the same boat’ so to speak and the support from this online group is lovely and friendly. With starting on the 10th you should find you feel well for Christmas and like you say the side effects are different for everyone. I was fairly wiped out the first week but did have some days where I had more energy then really picked up from day 8.
The pre-chemo group session should be really helpful. I didn’t go to one of these but thought it would have been nice to meet some other women starting at the same time. Good luck on the 10th and I’m sure there will be more ladies joining the December group soon.
Hi Mary,
I should be on Nov as had 1st round 19th my second round is the 10th so will be thinking of you starting. The support is amazing even if you don’t post. Everyone is different the common denominator is fighting of the evil BC. Do you know what chemo you are having yet? I am having FEC T so 3 rounds of FEC followed by 3 T, I am 10 Weeks post op left mx with anc and recon. All I can say is Take each step at a time. I have an amazing BC nurse to be honest all the staff are amazing, don’t bottle things up and don’t be hard on yourself big ?
Hi Guys
I’m hoping to be starting before Xmas sounds strange I know but I just want to feel like something is being done. I have to see my oncologist again on 12 December so hopefully after this or even during the next week I’ll get a defenate date.
Going to an information session next Thursday at the hospital so hopefully I’ll be able to find out a bit more information then. I’ve got TNBC and so my Onc has suggested x4 EC Chemo in 2-3 week cycles followed by x12 Taxol/Carbo weekly.
I had my diognoses 25 October so im super ready to start treatment now and get on with things.
Hi everyone
So good to see all these posts. Cheered me up immediately. Will answer some individually and no doubt we will all pick up the rest as and when. :smileyhappy:
Hi all!
After being told post surgery that I wouldn’t need chemo I am now starting chemo this month! Just found out on Friday and its come as a shock!
Prior to my surgery on 27th September I was told I would most likely just need Tamoxifen. After surgery I was told rads and tamoxifen. On Predict, chemo only gave me an added benefit of 1% and as my cancer was early the MDT decided no chemo. But as I’d been doing a lot of research I argued for and eventually got an Oncotype Dx test done (I fit the criteria…early stage, no nodes etc) I really wanted this as peace of mind. Rads were put on hold and there was a 3 week wait for results. Then on Friday the oncologist called me in. My Oncotype score had come back high at 31. Thats just in the high risk of distant recurrence group. It was a complete shock after such a positive prognosis by MDT. I was expecting a score of under 17!
So now its all going to be a big rush to get chemo started as you have to start within 12 weeks of surgery and this Wednesday will be week 10. After being told I definitely wouldn’t need chemo and being made to feel like I was over reacting by insisting on the Oncotype test to confirm this, its not been a great weekend!! Still trying to absorb this complete change in fortune!
Do any of you ladies know which chemo drugs you’re having? I’ve been told FEC as I have numbness in my feet from a previous illness. I’m hoping to find some ladies who have previously had FEC for their experiences, although everyone is different I know. It’s just that from my reading over this weekend I’ve read that some drugs are considered more doable than others.
This is all so so scary!!
Love to you all xx
Hi angel blue ??few tips that I hope will help you, get thermometer so you can keep eye on your temperature during chemo, take your meds as prescribed and if they don’t work tell your unit so they can alter them till the get them right, oral hygiene is important during chemo, drink lots of fluids 2-3l a day, the f of the fec will make your wee red for a bit after. Good cream to use during chemo for skin dryness is udderly smooth with extra urea from Amazon, days 7-14 of cycle is when you are Nadar and immune system at lowest but during all cycles keep eye on temperature and phone your rapid response number, if your wee burns and no temperature phone your rapid response number if you get thrush mouth phone rapid response number, see if you can get a wig voucher or pop into your Macmillan centre at hospital, they have wigs for a donation, also get yourself booked on look good feel better session through Macmillan too. Keep ???we are all here for you all ???I found keeping diary helpful during the cycles it gave me something to refer back to as each cycle happened, stick a post-it up and tick each one off, look at the bell in your unit and tell it each time, i’ll Be ringing you soon???keep focused and ??? hope this helps ???
Shi xx
Hi to all you lovey ladies for to start , my next cycle is 10th
It affects everyone a little differently
I had the pre chemo meeting and was the only lady there and much younger than the others which made me feel a little A little uncomfortable however the talk was really good they talk you through everything and then we got ten mins woth the nurse one to one she took me first which was nice as I think she could see how strange it was for me to be sat with men , be prepared for your taste to change and for a few days not enjoy food you normally would
Please remember any side effects speak with your team , I’m in October and November threads as my first round was 29th October so I was quite behind some ladies there , I’m haveing four of EC then Four T
Try and prepare for feeling ok but also for feeling not so ok, don’t be afraid to ask friends and family for support , I remember feeling so so nervous and scared on my first chemo, but they are actually such lovely people and they will do everything to help make it a little easier
These groups have been my life line at times when feeling no one else understands xx
I start carboplatin and Docetaxel on 12th December. I am dreading it but know everybody reacts differently to chemo. I have already had Mastectomy and fyll lmph node clearance. The surgeon was unable to save my breast due to having two tumours.
I am also having Herceptin for next 12 months and monthly oestrogen blocker.
My life has been turned upside down. I’m really dreading chemo but fingers crossed all will go well.
Hi ladies, I was diagnosed with tnbc on 22nd October. I’m 2 weeks post op (lumpectomy with senital node clearance & reduction). I have a meeting with my surgeon tomorrow to get the results and I’m hoping to find out my chemo start date. I think it will be before Christmas.
Can i ask angelblue - what is the Oncotype test? Has anyone decided to cold cap?
Lulu
The oncotype test is to some how asesser the risk of recurrence and weather chemo is of Benefit to people
Unfortunately for us tripple negative chemo is out only option so they don’t test us x
Hello. Diagnosed 16th Aug. SMX with auxilliary clearance with immediate reconstruction 23rd Oct. Saw oncologist last week. I have triple negative cancer stage 1 grade 3, and will be starting chemo soon. Just waiting for the date. Hope its asap as my daughter came over from Australia to care for me after my op and will have to go back end of this month, so would like to get started with one or 2 cycles while she is here incase I get nasty side effects. Husband cant do much to help me as he has very severe COPD and is on oxygen 24/7. So dreading this Chemo particularly the side effects.
Hi all
So glad I joined this thread. It does help you to feel less alone.
Lulu47 - oncotype is a test for women who are thought to be at low risk of recurrence. The criteria to have it done is ER +, HER-, no nodes or 1-3 nodes, early breast cancer. It’s a genome test (I don’t understand the science!!). A sample of your tumour is sent by your hospital to the Oncotype labs in USA. Results back 2 weeks later. Usually these do confirm what the MDT have recomended but occasionally - as in my case- it can change treatment plan.
bazzies - Happy Birthday for Saturday!! Thanks for the tips. I found out today that my meeting with chemo nurse is Sunday 9th and chemo starts Tuesday 11th. Its my birthday on the 10th and I’ve got an appointment at the MacMillan wig centre…a wig for my birthday…yippee!!
Shi and Kateday - thank you for all your support and tips.
Jennie1966 - I’m guessing we’re around the same age. I’m December 66 baby…will be 52 on Monday!
Marykamille - Isn’t it awful when you’ve been given such hopeful news to then have it snatched away. You have to readjust yet again. On this journey I went from potentially only lumpectomy and tamoxifen, to mastectomy and tamoxifen, to mastectomy, rads, tamoxifen, to mastectomy, rads, chemo, tamoxifen. I really hope thats it now!!
xx
Hi gocat
I think your post must have come through as I was writing mine earlier. If you don’t have somebody around permanently who can care for you if needed it makes things feel worse doesn’t it. If we all knew exactly what side-effects we were going to get we could prepare more. Its the not knowing that makes things worse before you start. Sorry to hear your husband has COPD. My mum has it too. I hope he’s doing ok.
Lots of love to you
Angela xx
Yes I am goung to cold cap. I have very thick hair so hoping I might not have to shave it off. It’s worth a go x
Hi ladies. I’m from the October 2017 thread. I finished 6xFEC-T in Jan followed by a single mx and rads.
So glad you found this forum it has been a godsend to me. My chemo buddies are my best friends and always will be.
If you have any questions please feel free to post in our thread or any if the others and someone will be able to offer advice.
X
Hi sorry, only just caught up with this! That explains why I’ve not heard of it then! Xx
Hi all
What a scary time this is! I think the waiting makes it worse! I’ve started planning some nice things for when this is over… to get me through and have something positive to focus on .
I’ve been scouring the forums for advice for dealing with side effects and thought I’d share a couple of things that have cropped up a few times…
I’ve read that Manuka honey is really good for mouth sores. I’ve bought some with a 15 MGO rating. Bloody expensive so hoping it works! I’ve started taking a teaspoon a day already. I’ve also read that putting dark nail polish on fingers and toe nails is supposed to help save them. I’ll be trying out a nice inky blue colour I’ve had for ages but never worn!!
I’ve also read that fasting can help with side effects. There are several threads about it on this forum and some information available on the interweb. Aparently fasting 48 hours pre and 24 hours post chemo can help with side effects especially sickness and nausea and its thought it can make the chemo more effective at attacking any cancer cells. (This is just what I’ve gleaned from quick research …I’m obviously not a medical expert). I couldn’t do 72 hours of fasting (you are allowed water, herbal tea, some steamed veg). But I’ve decided I’m going to eat less the day before my chemo (would have to be my birthday!!). On the day of chemo and day after I don’t think you eat much anyway.
Anyone got any other tips?? xx
Hi marykamille
I had my chemo talk today. With a group of older men! I then had 10 minutes 1-2-1 with chemo nurse. After speaking with her I’ve tentatively decided to give cold cap a try. I already have thin, fine hair and I know I may still lose a lot, especially on top and would need to wear a wig or top hair piece thingy. But I’m thinking that at least when I have a hat on I could have my own hair hanging down at the sides still. I’ll see how it goes, if its too awful I’m not bothering. The thought of a cannula and chemo are bad enough on their own!
hi gocat - have you spoken with Macmillan to see if theres any help you can get at home after your daughter leaves. May be worth a try. Its frustrating that it can’t get started before your daughter leaves. Could you try speaking to hospital again? I hope you manage to start sooner.
Good luck to everyone starting this week. I think a few of you are Monday and I’m Tuesday. Although I’m dreading it I’ll be glad to get the first one out of the way!
xx