Thank you so much for your help and advice. It is really helping me so much to have somewhere to find others who can share their experiences. I have been told I will be having EC chemo. I will see the oncologist on Tuesday for a second chat and will ask about anti-sickness meds and trials. I’ve already been told I will have to call a helpline if I feel at all unwell or have even a slight temperature so will need to get a thermometer 🤒
I feel so matter of fact about all these alien bits of information that i know I’m probably going to come down to earth with a bump soon...
I fully intend to keep laughing as much as I can xx
I found the cold cap very manageable so definitely worth giving it a go if it gives a chance to save my hair. Does add additional time to session but we are used to waiting around. Cold but not uncomfortable. For me it was a bit like going outside in winter with wet hair. I had a slight headache but I have had normal headaches that have hurt more. I don’t suffer from migraines. The ache was more on the scalp rather than over the eyes. I did take the advice about taking paracetamol before. Not sure if that is what you are supposed to do.
Thank you for sharing your experience of your first chemo session. You sound as if you are feeling and reacting in a similar way to me. I fully intend to try to stay as positive and cheerful as I can and as you say just follow all the advice from the doctors, breast nurses and from all the lovely friendly people here. It is helping me so much reading everyone’s tips and stories. How did you find the cold cap? I intend to try this too. Xx
I have had my first chemo session today with cold capping. Strangely I found it a positive experience. I felt prepared and looked after. I know that what happens next is unknown as everybody reacts differently and they have to list every scary possible side effect. So will try to stay as positive for as long as I can. My surgeon commented that I was always smiling so I think it helps. Don’t get me wrong I do worry about things but they tend to be things I have control of. All along since diagnosis I have felt normal and that in itself makes you think. I continue to say I’ll turn up when they say and do what they advise and that’s all I can do. I know it’s hard to tell someone to stay positive. You feel what you need to feel but I just wanted to let you know my first session was good. Fingers crossed that continues.
Re microblading. I have been told not too, and I have to wait 6 weeks after treatment has finished to have a top up.
@mini mad wrote:
re micro blading , i would say no, not a good idea. Too close to ur chemo and rusk if
Hi artycart I was lucky my onc prescribed me perfect antisickness meds from the start, no sickness and didn’t loose my taste either. If your antisickness meds don’t work ring your unit, you will get a rapid response card. They will tweak your meds till they get right combination. Treat chemo with respect, it’s not like normal, if you get thrush mouth (se from chemo) it will need antibiotics, if your wee burns like cystitis even if you’ve no temperature spike it will need antibiotics not just a bit of cranberry juice. Have they told you which chemo you are having? It differs around the uk as to what’s given also discuss with your onc about any trials you could go on, there might be something you could be eligible for. Drink lots of water it helps flush things through and pace yourself, rest when your body tells you. There are no right or wrongs on this journey, it is your journey and everyone’s treatment plan is specifically for them it’s not a one size fits all. 👭 we are all here, breast cancer now have lots to offer you with support ask away and ring the number on here too. I kept focused on the bell in the unit and told it every time I had chemo that I’d be ringing it soon, gave me a goal. Keep 😁and always 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💕💕✨✨Shi xx
i also had a reaction to the paclitaxel when i had it on its own n not with the carboplatin.
horrendous back spasms 👿 from then on the nurses slowed the speed at which it was going through for half an hour, then increased it back to normal. I didnt have a reaction again, hope they sort you out next time.
ive got my big 70 coming up this year .😳😳🥴🥴
mini mad xx 💖💖
I am from the August 2019 thread so have finished chemo and nearly completed radiotherapy. I was also diagnosed as TNBC - like you I was initially told that it was DCIS picked up on routine mammo and all the biopsies pointed to that. It was only when I had surgery that breast cancer was confirmed. My lump was relatively small - 12mm - and could not be felt by me or any of the professionals. I then had to have more surgery to check the lymph nodes which were clear. Since then I have had six cycles of FEC-T chemo which was hard but I got through it, I will have had 20 lots of radiotherapy which has not been bad at all and I have just had the first infusion of zolendronic acid which will help prevent any potential spread to the bones. That will be six monthly for 3-5 years and is not a problem at all - it only takes 15 minutes. I can't do much more except live healthily, keep fit and try not to worry about it. You will be well guided by your clinicians and the wonderful support of ladies on here and you will get through it. I know it would have been the most tremendous shock for you. All the very best for your treatment xx
Hi again Artycart,
i also was worried about the results from my bone scan but it was all ok so fingers crossed you will be too.
the chemo i had was 12 weeks paclitaxel and every 3rd week carboplatin with Filgrastim tummy jabs thrown in.
as others on here say it is doable, we all experience different side effects and of course there are gonna be bad days. You will find your own way of dealing with them but i was determined to stay strong n positive and just ticked my sessions off my calender 👍👍
i am 6 months post chemo now and im having my first hair cut since my new growth next week. Can i answer anything else for you ? Mini mad xx 💖💖
Hi ladies just popping on from Dec 19 starters - I also have TNBC had Mastectomy 01 November and am now halfway through chemo done EC and starting Docetaxel soon - followed by radiotherapy - it is tough but it is doable - keep a diary and you'll know roughly when your low days come around - I am finding these forums invaluable 😊 my hair has gone and I have 2 wigs but feel more comfy in a beanie and love seasalts handybands - opened the front door yesterday with my bald head and scared the Morrisons delivery man! 😂 Sending love Adele
I had my first round of chemo yesterday (Placitaxel ). I had 2 allergic reactions to it and it had to be stopped. Now have to wait for consultant appointment to see where I go from hear.
On the plus side I had my first Herceptin injection with no reaction at all.
Am wondering about continuing with the Herceptin without the chemo if I can.
Has anyone else been in this situation?
Any feedback would be great
Love Carol ♥️
Just popping quickly. I'm from the February 19 chemo starters group and like you was diagnosed with TNBC and also felt stupid for not find my lump despite checking. It was discovered during my routine 3 yearly mammogram. If you want any help, advice or simply want to have a rant then leave a message on our thread and someone will get back to you. There is also another girl in our group who is also TNBC and is currently having oral chemo. The months ahead will be hard at times but It's all doable. Sending you hugs ❤❤❤❤.
Susie B xx
Hi mini mad,
Thank you for your reply. There doesn’t seem to be a lot of activity on the tnbc page. I gather it’s more uncommon. I’ve been told I will have EC chemotherapy for 4 -6 months to try to shrink the lump as it is quite large. I can’t understand how I didn’t feel it before and am so angry with myself for not checking. I guess the results of the bone scan are what I’m scared about as I’m panicking that they will find secondary cancer mainly because initially I was told I had DCIS and then yesterday they told be the bad news. How bad did you feel with the chemo? I just can’t imagine how it will feel at all and I don’t even like taking paracetamols!
i was also diagnosed with Triple Negative breast cancer, bone scan is nothing to worry about 👍 at least it wasnt for me and i'm a wuss !! 🥴🥴
wait n see what ur treatment plan is first before u start thinking about hair loss. I didnt lose all of mine.
there is a page on here for TNBC but if i can help/answer questions just ask.
you're not alone on this journey.
good luck. Mini mad xx 💖💖
Yes, I am having chemo starting as soon as possible as well as scans to check my bones etc. Thank you for your tips... I will definitely get my teeth checked ASAP as I not so long ago started working as a trainee dental nurse so I know some friendly dentists...but not sure how I will be able to continue working... or even if I should. No idea how I will cope with losing my hair but that’s the least of my worries and I fully intend to continue laughing and being lighthearted as much as possible 💕
artycart, sorry you find yourself here. A good book that helped me was surviving triple negative breast cancer by Patricia prijatel, it’s not for everyone but it helped me. Are you having chemo before surgery now? Just hang onto the handle bar in front of you in your rollercoaster cart and you’ll ride through with everyone else 👭 just take it a step at a time, get a notebook, write questions down when you have appointments. Ask away on here, use the ask the nurse facility and the someone like me option too. Quick pre chemo shopping list, thermometer, get your teeth checked at dentist, they will get you in when you tell them you are starting chemo. Soft toothbrush, anosol (steroids can block botty for a few days) get your look good feel better session booked with your Macmillan at your trust, ask about a wig voucher if you are not cold capping also check with your Macmillan for their pre loved wigs. 👭 use the threads as much as you need, there is always plenty of ❤️👭 and believe it or not you will have 😁😂🤣😂🤣too with others sharing the journey. 💕💕✨✨shi xx
I have just been given the devastating news today that I have Triple Negative breast cancer and will be starting chemotherapy in one to two weeks time. This came as a bolt from the blue because about a week and a half ago I was told that my first biopsies showed I had DCIS and just needed surgery. I’m determined to do everything I can to fight but chemo is terrifying. I would love to chat about this as it helps so much to share and support each other.
Thanks for that Mini Mad
It is good to know what I may be going into.
Hopefully side effects will be manageable.
I get hot flushes already so kind of used to those 😂.
Yes unfortunately 1960 is the year I was born so it's the big 60 this year ( although in my head I am still about 20 Lol).xx Carol
i was dreading my first session. Have to say it took ages, flush the premeds first, flush then Paclitaxel then flush then ialso had Carboplatin.
my down days where 3-5, some nausea( no vomiting ), flushed face, few aches n pains n headache. Not altogether.... oh and didnt sleep much for around 4 nights... prob the steroids. You will know when you need to rest... i walked my dog everyday for around 20/30 minutes.
i also kept a diary from day 1. Was told by nurses to take my temperature every morning BEFORE i got up so i could see over time was the ' normal ' was for me. This way you will know if you have a temperature... i never did.
write down any side effects if any and the meds you took to help.
most important is to drink LOADS... at least 2 litres per day... it can be tea, coffee, squash, ice lollies, melon anything liquid... i ended up dehydrated and had iv fluids before my chemo..... so keep drinking.... but not wine .
hope this helps but we're all different so its kinda ' wait n see '.
mini mad xx 💖💖 is 1960 the year you were born ??
Hi Mini Mad
Nice to hear from someone who has had the same treatment.
I suppose the biggest question is how did it go, was it manageable? How much did it impact on your life and were the side effects
I am usually a very busy person who helps to look after 4 grandchildren, so obviously wondering how much I will be able to do with them. Any feedback would be really appreciated.
i had 12 weekly Paclitaxel when diagnosed with triple negatve breast cancer.
good luck for tomorrow. Any questions just ask.
mini mad xx 💖💖
I was diagnosed late November, had masectomy mid December.
I am about to start Herceptin and 12 weeks of Placitaxal TOMORROW!! 6th Feb. Obviously quite anxious but just want to get it over with.
Any advice, tips or just news always appreciated
Good luck to all the other Febuary starters ♥️
i had my first chemo FEC on feb 4 th and as of now I don’t feel any sickness or side effects .
just want to know what is the time gap to get the side effects
I’m from Feb 2019 and was ER positive had Fect-t 6 sessions, surgery & rads, now on tamoxifen. If you look through last years thread it should help you all but if you need any support at all just ask but top tip drink 2 litres of water a day and get suppositories to start off with.
Just to reassure you all that you will lose your hair on fect but it returns very quickly 4-6 weeks after you get the fuzz back after your last dose. I cold capped on first session and still lost my hair so I stopped it. Hair loss is traumatic and my eyebrows and lashes went at the end of treatment but honestly I was completely bald from may/June until end of July. It’s not long at all and it will com back ladies - here if you need any advice on anything ❤️❤️
Sorry leant finger on post 😆😆
as i was saying, to close to chemo with risk of infection..
mini mad xx 💖💖 Think you'll find the nurses would say same thing.
I'm from the February 19 group. I've heard if the Optima trial. I took part in a trial last year, ROSCO, and am currently going through the early stages to see if I can take part in the Add-aspirin trial. I found loads of useful information on the Cancer Research UK website concerning all trials for breast cancer. There's information about the trial, who can participate, which hospitals are running the trial, what stage the trial is at, etc. Deffinitely worth worth looking at.
All the Best
Susie B xx
Thanks both😘. Another question😁. Does anyone know if it is safe to get my eyebrows microbladed 3 days before treatment? Sx
Hi divadelph, second what mini mads advised, please check with your onc about any supplements during chemo 😘💕💕✨✨shi xx
please speak to your chemo team re supplements while having chemo. I believe some can interact with treatment. 💖
Can anyone give advice on which supplements to take to boost immunity and general health? I don't currently take anything so I'm a bit of a novice in this area😁
I was diagnosed mid Nov, mastectomy mid Dec. Starting Herceptin and 12 week course of Paclitaxel on 12th Feb....not looking forward to it but just want to get on with it now! Interested to hear any tips, or just share news...good and bad😘
Hi you will probably be better asking this question on a different thread as this one is for people just starting out with chemo. I have heard of the optima trial but know there will be lots of people who are already taking part. Maybe ask the same question on the general chemo thread or one of the older monthly ones.
Does anyone know anything about the optima trial ?
I recieved my 2nd op results yesterday , I had a full ANC. 4 out of 15 nodes was had cancer in them.
They asked if I'd be interested in the optima trial. You are randomly selected to take part and the trial looks at the genetics of my cancer and whether or not chemo is beneficial to my specific cancer. If I'm not selected then its chemo, rads and hormone therapy.
Any I do would be appreciated
Hi just to say if you need any help please pop in to the Feb 19 thread. We are all a year post starting chemo and many of us had the same regime as you. Good luck to all you Feb 20 starters x
thanks for the information and it will really help me
I am starting my chemo on feb 4 first 3 with FEC and the last three with D
Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo:
This thread is for anyone due to start chemotherapy in February 2020. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.
Here is the BCC guide on chemo:
I finished my chemo over a year ago and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:http://lifeafterlola.blogspot.com/p/chemotherapy.html
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
Best wishes xx