I’m in England have my first scheduled treatment on Feb 1st. with our NHS. I’ve been waiting for the oncology nurse to contact me and I received a letter today saying the appt will be on Saturday 27th Jan. That seems a long way off to me. For those of you in England is this normal and will I have enough time to prepare after the appointment?
Pinklizzie sorry you find yourself here. Get a thermometer so you can keep track of your temperature during chemo, get your teeth checked at your dentist before starting chemo, tell them you are starting chemo they will get you in comfy clothing when you are having infusions, are you having a port or pic line do you know yet or just injections? Get some anosol and senokot and Imodium sorry if tmi but your Bowles could be all over the place with chemo (manageable) but quite the experience as a lot of us can vouch for do please think about donating your hair to little princes trust if you are not cold capping, ask about a wig voucher too and get signed up for a look good feel better session with your trusts Macmillan and also ask about any other therapies available to you too get some lip balm, I painted nails black to protect from us light during chemo and only lost little toe nails but I know others have used nail treatment and tgsts worked for them too you could join the chemo thread when you start you all get each other safely through hope some of that helps a bit and sorry you find yourself here Shi xx
Thank you Shi. You have been extremely helpful. My dentist bought my routine appointment forward for me and I had a wisdom tooth removed yesterday. I have a hygienist appointment at the end of the month and have made 3 monthly follow ups already. I know I’ll be having IV chemo but not sure how it will be administered, that’s on my list of questions. I have 3 months of EC then 3 months of Docetaxel plus sub/cut Phesgo, then surgery then possibly radiotherapy followed by more chemo/targeted treatment. Thank you for the info of bowel management.- - be prepared for both ways! I am thinking of cold capping. My daughter said she will grow her long hair a bit longer to cut and have it made into a wig for me but I understand human hair wigs can be difficult to manage and I have an appointment with a wig supplier soon. I had thought of the Little Princess Trust but to be honest although I expect to lose most of my hair I am not in a place to shave it off at the moment so I may suggest to my daughter that she donate what she has offered me to the princess Trust. She has beautiful straight auburn hair like mine (although mine has a little help these days) so it will be a wonderful gift for a child. I am really interested in preventing my nails from harm as they tend to be soft and a bit flaky due to my underactive, but treated, thyroid. I will certainly look into that. I had my usual French manicure yesterday and any tips you can give to pass on to my manicurist will be very helpful. My older sister always has her nails painted black so that will make her smile for me to go from French to black - something I said I would never do! Thank you for mentioning the chemo thread - I did look at some posts on there and will look at more just to get some idea of what I can expect and obviously join in February. I also had my hearing and hearing aids checked today and explained about starting chemo. He said I could go back any time if I find my hearing changing and if I feel too weak they could arrange a home visit. His partner has just gone through treatment for DCIS and is awaiting another reconstruction so he took my concerns very seriously. I am awaiting the result of a lymph node biopsy - they said they thought it was a reaction to the tumour biopsies but wanted to check it out. I phoned today as it was 3 weeks ago and apparently it is on the MDT list to be discussed on Monday and someone will get in touch with me. At the moment I don’t know what else I need to know but it is very reassuring that there are people like you I can turn to and places of support that is genuine. I wish you all the best in your journey and hope for the best outcome for you. xx BTW do you know of any support groups for husbands/partners and family members?
Pinklizzie1 take everything one day at a time, one treatment at a time things can change and as I’ve said treatments will be tailored specifically for you. If your antisickness meds don’t work do ring your rapid response number that you will be given, don’t battle through thinking oh this chemo, your team will tweak your meds if they need to. Chemo can cause thrush both oral and down below so be vigilant it will need antibiotics usually not just over the counter stuff, ask them for fluconzole if you do do ask your MacMillan if there are any supply groups locally for your husband and family but bcn is here for all of you and they can always ring the helpline number for bcn or as previously we have had concerned husbands, partner, family members create a username themselves and anonymously join as thread users and bcn nurses and bcn moderators try and help do ask about the wig voucher and also your trust might have pre loved wigs in the Macmillan which are also good remember you can get these styled so look at all options and get the one where you can still see you, the one you feel you in or just get every wig under the sun, tinsel ones, coloured bobs whatever you want (like I did) it’s called chemo steroid shopping finger, I’m warning you now been lots of crazy shopping from forum members over the years, it’s the steroids do keep your joy, do keep doing what makes you happy do reach out here through any wobbles everyone’s got each other here bcn helps everyone Shi xx
Hi
Please join a chemo starters thread as your pink brothers & sisters will help and support you
If you are cold capping i recommend you take a paracetamol an hour before it starts and use a tena lady to stick on your forehead to help with drips and brain freeze
Buy a paraben free conditioner. I used Tropic as you will have to wet your hair and slather this to help the cap slip off after each treatment
As you wear hearings aids / devices you may need to ask the nurse to pull the cap on tightly otherwise your hair above your ears may go
Fir nails i used a product called Polybalm and continued to have bio sculpture throughout
A good book, blanket and some mints for sitting in the chair
Drink at least 6 large glasses of water per day from now until treatment ends
Get some buscopan for washing machine tummy and pace yourself
Rest, rest, rest
Try a short walk each day
Good luck, you will get through it
Oh dear me! I didn’t expect to burst out laughing when I started to read your reply! Thank
you for all the tips. My first chuckle was imagining myself with a sanitary towel on my forehead. It reminded me of when my little brother got hold of one of my mother’s pads (a long, long time ago!) that hung from a belt and put the loops round his ears. And then I read washing machine tummy" - I now have a very clear idea what to expect! Thank you for cheering me up.
I’m thinking about using cold mitts and socks to reduce the risk of peripheral neuropathy. I had decided to take knitting and hand sewing but I won’t be able to do either with those bulky mitts on! Might have to try them out to see if I can turn pages of a book.
Thank you Shi. You made me chuckle too! Can I get anticipatory “chemo steroid shopping finger” until February when it all kicks in proper?
The idea of pre-loved wigs, whilst a good idea, gives me the eeeby jeebies. Many years ago when I was a Health Visitor an elderly lady came to see my in my office for advice. She was embarrassed but took off her wig and honestly I’m sure it crawled across the desk - grandchildren had head lice and she couldn’t persuade her daughter to treat them! I can’t get the picture out of my head! I will ask about a wig voucher. Not looking forward to a sore mouth as I’m very prone to cold sores both up my nose and in my mouth - must check if I can still use Zovirax up my nose. I’m aware that we need to use a hefty sunscreen but never thought light affecting my nails. Lots of thongs to think about.
Dr White sanitary pads…like a mattress between your legs!! LOL
omg curkywurly you’ll get whole threads tonight bless you, it’s right up there with meesh’s bum buttering tips from our oct17 gang Shi xx
Hi pinklizzie, do check out the Raquel Welch Wig Collection on line. Seriously, they are fantastic and much cheaper and easier to manage than real hair wigs. My mum used two of them and I bought one for myself when I started chemo, but thanks to the cold cap I didn’t lose much hair so I never used it. Have also just recommended them to a friend who thinks her new wig looks better than her real hair, good luck with it all!
Cold sores can be a sign of deficiencies of B12, iron and folic acid, so maybe get those checked out too. Having vitamin and mineral levels at OPTIMUM-not just ‘in range’ helps with so many things, so maybe ask for a complete blood panel done before starting Chemo too.
Good luck and keep us updated!!
Hi @pinklizzie1
So sorry to read of the journey you are about to embark on, but I am much further down what looks to be a very similar journey. I was diagnosed in May 23 and started treatment in July 23. I’ve had 3 doses of EC, then 4 of docetaxel with Phesgo. Doses were all 3 weeks apart. The Phesgo has continued and will now until I’ve had a year’s worth. The Phesgo is because I am HER2 +ve. I’m guessing you are too. I had surgery on 15th Dec which was 4 weeks after my last full chemo dose. Surgery was a lumpectomy and full node clearance (2 of my lymph nodes were affected and that was enough for them to want to take the lot out. Now I’m still recovering from surgery and waiting for a CT scan ahead of starting 2 weeks of radiotherapy sometime in mid-February.
My good news was that when they examined the tissues removed during surgery they couldn’t find any signs of cancer. It’s called a complete response. So all the treatment now is to prevent it coming back. I will pray you have a similar response.
Everything everyone else has said here I would wholeheartedly support and endorse. The tummy and bowel stuff is so true and in my case, is persisting, but that may be a consequence of still being on Phesgo. I didn’t cold cap, so can’t speak about that. Without it I lost most of my hair in the second week after first treatment. I too have an under-active thyroid, that doesn’t seem to have been affected in any way, but they have added in a thyroid function test to one or two of the many blood tests I’ve had over the months just to keep an eye on it.
It can get a bit blurry as to what side-effects are caused by what. With EC constipation was a big issue, but I think that was in part due to the mega anti-sickness capsule I was given each time before the EC was administered. It worked, I had no sickness, but at a price. And other SEs were more to do with the steroids they give you alongside treatment and for a few days afterwards.
Every hospital is different, but mine in Leeds ‘push’ the EC injection. This means it’s given slowly manually rather than through a pump. That means a nurse is with you giving the treatment themselves the whole time. I found this helpful, but it does mean there was no real opportunity for books, reading etc. Also since the cannula went into the back of my hand, even writing for a crossword was tricky and knitting wouldn’t have been practical.
These are just little tips I’d no idea about before I started. I could write a book’s worth more! Anyway, I thought I’d let you know I was here and seemingly so similar in diagnosis and treatment plan. I’m 60 (59 when I started all this!) so maybe a little older, but do ask us all anything - between the pink ladies here there’s not much somebody hasn’t gone through already!
Lastly, for family support, do look up Maggie’s and see if you have a centre near you. They are great for all the ‘non-medical’ support for you and the family at every stage.
Best wishes with your journey. I will be for you.
Sue
Hi Sue,
Thank you for your response. Good to read that you had a good response to your treatment. Aggressive as the treatment seems to be it appears to be very effective. Yes I have Grade 3 IDC, HER2+ ER and PR negative cancer. My treatment is almost identical to yours except it’s planned that I have 3 cycles of Docetaxel and Phesgo. I will receive the result of a lymph node biopsy tomorrow. The MRI showed a single lymph node which was slightly enlarged that measured only 5mm. They didn’t think it to be particularly suspicious and possibly a reaction to the lump biopsies but biopsied it anyway. Can’t be too careful with this nasty cancer.
I’m 73 and feel very lucky that there is effective treatment available. As a nurse in the mid 1970s I was the Sister on the “radiotherapy” ward and we had several ladies in with breast cancer. One young woman I particularly remember was a couple of years older than me, had 3 small children and was terminal - very few hospices in those days. Anyway I remember gently rolling her over in bed to try to make her comfortable and her femur bone just broke. It was awful. Thank goodness for medical science. Whatever I have to face over the next year or so is nothing to what people suffered in the past, so for them I will go into this appreciating every little, and big, side effect as another kick in the teeth for cancer. If the treatment is making me feel bad - the cancer cells will be feeling much worse!!!
On a lighter note I have an appointment with a wig supplier in Nottingham next week and from speaking to the owner on the phone sounds like it may be fun! I’m keen to avoid peripheral neuropathy so looking into hands and feet cooling which is why I was a bit disappointed my appt with the cancer nurse is only a few days before my first planned treatment. I was hoping s/he would advise me. Did they give all your EC by hand or just the first cycle? Not sure how it would work with cold mitts.
I’ve never heard of Maggies - thank you for that - I see there’s one in Nottingham - not too far to go. Its amazing how many charities there are that we never hear of for cancer families. I’m looking for support for my husband through all this.
Wishing you strength and success on the next stage of your journey. I am so grateful for the information you have given me, thank you.
Liz
Hi Liz,
Yes I had all my EC by push, and to make it more comfortable going in, my hand was wrapped in a heat pad. But like I say I wasn’t cold capping. I know Nottingham well. It is my alma mater and my daughter was born in the City Hospital. albeit 27 years ago!
Do let us know how you get on when you see your nurse.
Hi again
Ask your team if you can have a PICC line or Port as having a canular each time can sometimes be difficult and veins dont like chemo
There are pros and cons to each delivery options so chat it through or talk to one of the nurses on here
Good luck
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