Thank you Deano for the encouragement! It means a lot to hear from someone on the other side of this. I just finished my first cycle - getting it in weekly sessions for the foreseeable future.
Been lurking since diagnosis this summer...
Quick intro: I’m 42, married with two boys (9 and 7) 36mm grade 2 - Therapeutic mammoplasty and axillary clearance took place 27 September (1/7 lymph nodes found cancerous). Radiotherapy and hormone therapy a definite - but awful last week of weighing up chemo benefit. In end I have entered the Optima trial (50/50 randomised selection to have genetic test on tumour to decide if chemo benefit, with default chemo)
Trial results on 25th - chemo booked today start 27th Nov (so I’ll have two days to get my head round very likely to definitely- which is a big big difference!). Haircut booked for the 26th - so it will be a normal trim or a severe pixie cut!
The unknown is hard 😞
Hope everyone is doing ok ❤.
Good luck with the chemo today Flou, hope it goes smoothly. Lisa 49, did you get a date yet?
I am on countdown for cycle 2 next week. Def a better week but everything is an effort, have to rest between any a activities. Happy alot of people are getting by with minimum side effects, guess I am not one of them but after watching a programme about having cancer in other countries makes me realise how lucky we are to have the treatment and options available to us!
How is everyone still waiting to start. The anxiety does lessen once you get into it...keep your spirits up lovely people...
just popping in from Feb chemo starters and wanted to reassure you all that your chemo will go very quick I had 6 rounds of fec every 3 weeks. Drink loads of water 2 litres aim for and try bottled spring water better than tap and also ask for suppositories as I had bad constipation and trust me these worked quickly. I was er positive her2 negative and had grade 3 tumour at 4 cm. I had one lymph node affected. Chemo shrunk my lump to 1 cm and I had this removed in July with 9 lymph nodes followed by 23 sessions of radiation in breast neck and armpit.
I lost all my hair after 3 weeks my eyelashes were the last to go in June on my last session. My hair grew back within 6 weeks and by end of July I had my hair coming back and what a relief ladies- it will grow back trust me and invest in a silk hat or pillow as this doesn’t pull on your hair
The worst thing for me was the hair Loss I wore a wig and I had terrible oral thrush and had a mouth wash for a week after chemo the first 3 sessions of fec I managed ok but docataxel gave me bad aches in the legs and I had a reduced dose as I couldn’t stand it - I had slight numbness in fingers and toes but this has now returned. My nails have got better use nail harder as it goes help
All I can say is you can all do this and you will get through this remain positive and instead of saying why me what helped me was I thought thank god they found it and can treat me - if they can treat you they can cure you and you are all worth it otherwise they wouldn’t bother as it costs thousands my treatment was over £50,000 on nhs
Im happy to support any of you if you need it my group have now moved onto Facebook and we still chat. Good luck ladies and stay strong it’s just a process I’ve took photos of my hair each month to document it’s return ❤️❤️❤️
Matinav sorry you find yourself on here, Patricia prijatel book surviving triple negative breast cancer was very helpful for me, not all tn’s would say so but it helped me, so you might want to give it a look, she was tn herself, other USA tnbc survivors Shannon Doherty, robin Roberts, Joan lunden, they have all posted online and I found that helpful too. Also your MD Anderson clinic in USA is worth keeping eye on with their research and treatments. Sorry I can’t answer about the ac, had fec-t for tnbc 2 years ago. Hope this helps in any way 💕💕✨✨Shi xx
I am triple negative and started Chemo Thursday. I am 54 and have no known gene relation although family is rife with breast cancer. Because of Triple Negative, the plan is neoadjuvant chemo then bilateral mastectomy, then we'll see if I need to do something else. Tumor is contained. So I hope this works. I think the anxiety from waiting sent my blood pressure through the roof but now I feel calm and just trying to stay healthy throughout the process. And stay away from Germs!
The Chemo is 4 x AC every other week. Then Taxol for 12 weeks every week. I'm in the US so it might be different here. I was hit with Neulasta 27 hours after treatment and immediately felt sleepy. I was told to take loratadine to keep from feeling bone pain from the Neulasta. Saturday was the only sleepy day but Sunday I was up again. I'm feeling like I shouldn't be feeling this well. I'm wondering if it gets worse as time goes on?
Minor Symptoms: Gas, bloating, Constipation (I'm taking 600 mg of Magnesium for this - seems to work - didn't tell doctor), Nausea (eat crackers and take ondansetron every 8 hours for three days then as needed), headache - (take ibuprofen). Felt a little dizzy on Saturday and feel that now and then, like I'm a bit wobbly. I attributed that to the Neulasta but who knows. I also had some hot flashes the first day but they went away.
They said side effects would hit me 72 hours after treatment and I feel like it didn't. So I'm concerned. I know that sounds weird. Nothing too bad happened and I am concerned.
Wondering if it will be worse next time? I was told not to do Cold Cap because AC is so strong no hair can last.
Today is Tuesday, 5 days later, and the worse thing going on today is something that feels like a sinus headache that hurts so much my glasses feel heavy on my face and I have to take them off periodically.
Doctor wants me to exercise daily and get heart going for at least 20 minutes. Haven't done that yet but have been walking. He says the busier I am the better it will be. So far he's right. He doesn't want me resting! I'm keeping myself quarantined but don't like not being able to go to the store! Is anyone else taking AC?
Here’s my take on it a week in
i didn’t expect to be so tired on day 2 i needed 6 naps
severe heartburn, from evening of day 1. headache nausea and the tiredness were mainly days 2-5x
i had constipation so have Licorice prunes and prune juice. Which has helped lol.
also got a prescription for an antacid (gaviscon type) and mouthwash from Drs.
Good luck xx
The waiting is the hardest and I wish I had gotten the things on your list because now I won't go to the store and have to wait for family on the weekend!
Sorry to hear about your throat, I can imagine how upsetting the delay in starting is. I am still waiting for a date and like you feeling incredibly anxious.
You're funny. My friends and family are checking up on me and I don't want to talk about it either. I'm tired of talking about me! So I get not telling people. Totally get it.
I too have been massively anxious- more so than for my surgery. For some of you, your treatment is starting with Chemo- which must be a hard way to start.
As it gets nearer, and I have accepted that it is inevitable, I am starting to feel a little more accepting. I will tell you all how the PICC line goes tomorrow, and then how Friday goes.
I have stocked up on CBD chocolates..so I am hoping that will help with anxiety and nausea
I hope those who are starting before me this week , I really hope the process is as smooth as it can be..
It is great to be going alongside this with you all XXX
I can completely identify with the waiting. I’ve been waiting 3 weeks then finally get a date for next Monday then get a throat infection and it’s cancelled. Had a mini breakdown myself today. GP put me on mild antidepressant as just not coping. We are climbing mountains, all of us.
sending hugs 🤗 x
So happy for you. I had a break down today as the waiting for treatment was getting to me. Got a call to start on Thursday.
no more treatment for me, i had my single mastectomy and 3 nodes removed back in April.
i am having Zoledronic acid iv every 6 months for the next 2 years, next one is January next year and first mammogram again in March.
this is my second TNBC , hoping thats it now...👍💖💖
I have just been to see my oncologist today as my anxiety was off the planet about a slightly suspicious node as she put it shown on my scan. Got some clarity and feel a little better after speaking to the cancer nurse. I mentioned that I have been taking cbd oil for my anxiety and asked if I could continue when I start my chemo and she said she didn't see a problem with that so really good news for me to help me manage my anxiety, she said better than taking diazampan which I had taken earlier in my diagnosis
hope me this helps
Hi Mini mad,
Thank you; it’s really good to hear from people who’ve finished chemo 🙂
Do you have any more treatment to come?
Ah your holiday sounds lovely, enjoy!
I don’t know much about CBD - do you know what benefits it can have? Are you thinking of trying it?
Sorry I have been inactive for a while. I was ill last week sore throat and glands up so did not have my chemo last Monday.
After my visit to the chemo unit and running through all the side effects and how I react to drugs a lot less potent,(codeine, eterocoxib, iboprufen etc I could not get comfortable with going ahead with chemo for me.
So I made a decision and saw the oncology team, who could totally understand my decision and am now going to do radiotherapy and endocrine drugs instead.
This decision was right for me I feel so much more at peace.
So I just wanted to wish you all the very best as you go through your chemotherapy treatments as I will no longer be part of this thread.
i'm doing quite well thankyou 👍
i now have a covering of soft fluffy hair, eyebrows are back ! n eyelashes are growing !!
energy wise i am def not as weary as i was, but still going upstairs slowly.... but coming down i'm getting quicker 🚶♀️🚶♀️🏃♀️🏃♀️
going to The Canaries for a week of r & r end of this month. Had enough of hospitals this year ......
It was all doable.
days when i'd had enough, roughly half way through, but you dont really have a choice, so you just continue.
Side effects for me really werent too bad. You learn as you go along the best way to handle them.
i would say drink loads, about 2+ litres a day. This can include tea, coffee, milk in your cereal, ice lollies, fruit ie. melon n pineapple.
Oh and i took my temperature every morning before i got up, wrote it down, that way you can see what is a normal temp for you.
i had Triple Negative BC. 12 weeks of weekly paclitaxel and every 3rd week carboplatin.
what type if BC n treatment are you having ?
mini mad x
Hi everyone and lots of positive thoughts to you guys starting this week...❤.
After being horizontal for 2 days I managed to clean my son's bedroom today and go for a walk...just need to rest between everything. Can't believe how much it affected my legs and energy in my body. I guess we havevto remember every cell in our body is being zapped by chemicals so no wonder it responds in kind..I am on Day 12 and pretty much feel like I have had flu and am just starting to move about..but again everyone will feel differently..i think I def had a dip Day 7.
Glad you got to go to the Chemo units before to see the surroundings, def helps to prepare.
How are you doing mini mad?
Hi Chris631 and Lou604,
im from the June chemo monthly thread and just want to say good luck with starting your chemo treatments 💖
i finished mine .... yay..... just over 2 months ago now so if you want to ask anything please do. Mini mad xx 💖💖
I've not posted for a while, but still been reading (and hugging :)), it's great to read all the tips and info coming though and to see the different ways of coping with the myriad of side effects! I am already in awe of you all 🙂
I went to the meeting at the Chemo Suite yesterday with my 13 yr old son, it definitely helps to see the surroundings etc before I go in for my first treatment which is this Thursday 14th. I go from being nervous to calm to weepy to joking all within the space of a few minutes - the poor loves around me that have to deal with that!
I don't think I'm doing the cold cap but may change my mind when I get there. I've a list of supplements etc the nurse asked me to bring along on Thursday and Pharmacy will check the out against my prescriptions. I've my second acupuncture sessions this week and I moving towards a practically complete plant based diet - has anyone seen The Game Changers on Netflix?
My mum is coming down to stay from Thursday just to see how I am those first few days - that's what I'm struggling with the most as am generally a planner and this is all a bit "wait and see".
I'm compiling a list of positives however banal so if you want to add any in please do, so far I have:
- I can keep eating Brussel Sprouts (I love 'em!):smileyhappy:
- Meeting new & positive people
- Licence to wear comfy clothes all the time if I want
- Little things have stopped stressing me out - I'm even including Brexit in this!
- Other little things are making me smile (naughty kids in shops, squirrels, tacky Christmas gifts)
That'll do for starters, but please feel free to add more.
Wishing everyone a good, strong & positive week, lots of love
mine is 18th and like you I am very scared of this. It’s all Unknown’s as everyone reacts differently. We all need support through this. Hoping these lovely ladies will help us through. I’m thinking of you. Hugs 🤗 xx
Well got my start date today for chemo 26th November. Very nervous, But know it's a given has to be done. Hope you lovely people will give me courage to get through this
we lost Samantha in Aug 77, Rich Aug 09, Steve had his stroke Aug 18, I found my lump Aug 19.
Life has taught us nothing is for granted. We have to face each blow and hurdle with as much positivity as we can in order to get through it and breathe again.
This time will be tough but we will survive xx
Sorry... Posted too soon. She is a raw chocolatier and sells cbd raw chocolates. I know alot of people on Chemo in the US.
Aw Lisa, my anxiety went way over roof everytime I read anything. You always pass on hurdle then something else gets you. My oncologist told me there was some points on my lungs but told me they weren't important as if you randomly scanned 100 people you would find similar results. Made the mistake of telling a pal who is a nurse and he was 'like ok' with look on his face as if to say 'really'. Then told I had to have another US after MRI just' to complete picture' and then when I went for scan was told they had found other shadow in breast (just a cyst). Now dreading results of bone scan as same radiologist told there was no way a tumour this big would not have been detected in a scan I had in February and did I want a review? Luckily I am feeling so crap physically I hacen't got energy to be anxious anymore...
Glad you have found someone for your daughter to speak to, it will def help her deal with it all...
Seriously bin google, sends me into panic each time when I do the predict tool or prognosis stuff.
Hope everyone is having chilled weekend
Fantastic tips... I have just done my first shopping haul... Sickness bands, gaviscon, gin gins, hand anti bac gel, ginger tea, paraben free shampoo. You guys have now made so many more suggestions.. I will have to trawl through the messages 😁 and do another shop.
Anyone tried CBD.. Our friend is a raw choc
Hugs to Chrisy, Nhlanhla, Louie604 and anyone else feeling anxious x
I have my appointment to see the chemo nurse Tuesday morning, so I’m hoping they might be able to give me a start date.
I received copy of the letter from oncologist to my GP this morning and stupidly went on Google (I know I shouldn’t have) and am having a really bad day with anxiety through the roof. Sometimes I feel like I’m coping ok, but then it just takes one small thing to send me right back into panic mode.
Just wanted to say how sorry to read about the losses of your baby daughter and your son, I can’t imagine how awful to go through that.
Also your knitting is absolutely gorgeous!
Hope you are feeling a bit better today. How far apart are your treatments?
Thank you for your reply.
I told my daughter’s school and they said they would catch up with her every Friday, but I think this tailed off after a couple of weeks, so I found a private counsellor for her who she likes and sees every week.
All your hints and outside advice very welcome!
My hospital’s esthecienne recommended Tolériane nail polish from La Roche Posay with silicium to protect nails during chemo.
Loads of tupperware!! Storing food safely (I'm a bit of a germ freak) and having little pots of dried fruit, nuts, chocolate treats, ginger nuts, ritz crackers, sweeties....
My nurse suggested having hand gel at front door for visitors and my kids coming back from school...I bought disposable gloves for picking up dog poop etc....
Thanks for all your hunts Shi. I had nothing prepared as got back from holiday 2 days before Chemo started..was just impressed I got hair done, heart scan fitted in and did an Asda shop, ha ha. Need my daughter to get some shopping done for me.
Legs like jelly today. Managed a shower, walk round house, washing in and then collapsed again. Small steps....
Anyone else up in Scotland?
Yes skin can get dry through chemo, sorry forgot about that, a good one is udderly smooth with extra urea from Amazon, lots of us used that one and yes lip balm. Some of us painted our nails black during chemo it protects against the uv and helped keep nails, others have used a protective nail treatment (sorry can’t remember the name) to help preserve nails too. Just take it one treatment at a time 👭👭keep hold of each other and get safely through and plan your meet up for after you’ve all finished all ops, rads etc, our oct17 gang had weekend in London and it was lovely to all meet and spoil ourselves a bit ❤️ 💕💕✨✨Shi xx
I also got some figs, prunes, liquorice just in case I got constipated and have found prunes good 😊
plus sugar free sweets & gum to promote saliva.
my bodyshop consultant friend had put together some creams for my skin and lovely lip balm.
Difflam mouth ash, oral hygiene very important get you teeth check before starting, let receptionist know are starting chemo and they will get you in. Your Macmillan have pre loved wigs, so might be worth checking out there before having to pay towards your voucher. Also fantastic wigs available from shops that do extensions and hair oils if you have any near you? They are usually just little shops that are dotted around your city. Silk pillowcase was gentler on head after loosing hair. If you have long hair please think about donating to little princes trust, it helped to know my hair was going to do some good rather than in a bun ❤️ I kept a 3 weekly cycle chart throughout and wrote times I had meds, what my temp was etc in it, it helped so I could refer along the way. Take a notebook to onc apps with all your questions and write the answers in there, ask for your goody bag at the appointment so you’ll have your full meds, if you get oral thrush (lots of us did) it’s fluconzole you need them to give you. Remember on chemo you need to always check anything with your team, don’t just pop a paracetamol, it could need immediate antibiotics. If you antisickness don’t work don’t suffer ring your unit, they will tweak your meds. For the jabs, opposite sides of belly button, grad a bit of belly, plunge needle in, push down, let needle pop back up into container and all done takes less than a minute 💪💪for any needle phobics like I was it’s easy peasy you will be fine. Hope this helps 💕💕✨✨Shi xx
It's so hard to prepare, so far I have gotten a thermometer, travel bands, protein shakes, Gaviscon. Open to more suggestions.
like you I am waiting to start. Mine is 18th and I am really nervous to the point of not sleeping. I guess we all have a huge fight on our hands.
I have been given some tips for chemo. Travel bands on the wrist are very good for nausea. Wear them at the infusion and after that in between sessions. Gin gin sweets from Holland and Barrett are also good for sickness as is boiling raw ginger sliced up and draining the water to drink once cooled.
If you need the filigstram injections take an anti histamine tablet after such as Laratadine. This helps with bone pain.
Start taking your temperature every day before you start chemo to get your baseline temp so that If it spikes you know the difference.
hope these tips help. Good luck 😉 sending hugs 🤗 x
i have started to build up a basket of things I will need. Some of things I have prepared are the likes that of pain killers, baby wipes, hand sanitizer, soft tooth brushes, sea sickness bands, skin cream, dove two in one shampoo as trying the cold cap, which will hopefully be gental with the remaining hair. It has took my mind off the waiting a little
hope this helps x
I too feel like I am waiting to take an exam I don't feel prepared for. I too am starting to wake at 5am and I am usually a log!
Just reading the book 'tea and chemo' .. I would recommend it as a light, reassuring and positive read.
To those on Chemo now to those who are about to start... What are your top tips of things to buy/prepare. I am working until Wed when my PICC is inserted so I have a few days to prepare.