Hi all
This thread is for anyone starting chemo in May. A place to share tips and experiences, and to support each other along the way.
Sue xx
I’ve been waiting for this one 
I start on Saturday with my first of 6 rounds of chemo. I am HER2+ and hormone positive and have what the oncologist has explained as a quite aggressive mix of Docetaxel (taxotere), Carboplatin and then also Pertuzumab and Trastuzumab.
Ive obviously googled and searched the forum intensively re side effects of this mix and I suppose sometimes knowing more is good and bad! I know I’ll have fatigue, aches and inevitable hair loss… but the delayed onset worries me as to when and how to work! But will have to take that as it comes… not my forte as a serial planner.
My mum is flying down from Scotland to stay for a week as my OH is on funny shifts at work, so whenever side effects hit I’ll have someone to care for me.
To say I’m a bit apprehensive is an understatement but I think also I don’t quite believe its happening yet so I’m living in ignorance right now!
I’ve been to get my hair cut shorter and will give the cold cap my best go and hope for the best…!
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I’ve also been waiting for the May thread.
I start my chemotherapy on 9th May, 3 xEC & 3x Docetaxel and Trastuzumab.
Butterflies in stomach today, thinking about how it will be this time next week.
Following April starters has been very supportive.
Let’s stay positive, we can do this with each other’s support
Thanks to everyone for their ongoing support.
x
Thank you Sue for this May Starter
I had 4 treatments of 2 chemos in Feb- mid April. I started my second round of treatment at the end of April. Now down to one chemo. I am starting my second treatment of Paclitaxel (taxol) today. My first taxol treatment the side effects hit me a day later. I was in severe pain ( muscles and joints). I was bed bound for over a week with little pain relief. My feet become numb after the third day and hands would tingle every now and then. I couldn’t open anything (water bottles, ziplock bags, med bottles) because of my weak joints. My eyelashes and eyebrows are falling out. I have hot flashes regularly especially at night when trying to sleep. I have to take steroids 2 days prior to treatment due to my reactions (burning sensation on my upper back and shoulders) with the first treatment. The steroids make me urinate a lot. I burp constantly it’s very uncomfortable. My hot flashes have increased as well as my appetite. I am irritable and trying not to take it out on my loved ones. These post are exactly what I need. Thank you.
Hi all,
I start chemo 13th May, I have early stage grade 3 ER positive PR negative HER2 - breast cancer. Had the delights last week of a whole 24 hours to decide whether to freeze my eggs or not amongst other stuff.
Nervous to get started, I start with 2 rounds of EC and my cancers reaction to this will guide the rest from there. Around 4.5 months in total with surgery and radiotherapy after.
great to have some people to chat with that are going through the same thing good luck to you all.
Hi!
new the the group here. I start chemo on Monday and get my portacath tomorrow. Am I being dramatic about being nervous for the portacath? Haha! I’m not looking forward to it.
I have stage 3 type 2 invasive ductal carcinoma! I’m impressed I can even remember that. Reading y’all’s posts about which chemo you are taking makes me think I should start some flash cards or something to get some of this terminology down.
I definitely feel the same as others when it comes to the inability to process it all. Told my counselor yesterday and we changed my meetings to twice a month.
Everything is happening so fast! I got diagnosed two weeks and one day ago. So from the diagnoses to chemo will be 3 weeks! So grateful for efficient doctors but pheeewww it’s been hard to process.
Sending love and good energy to you all!!!
I’ll gladly take any tips to keeping my immunity up if anyone has anything!
I’m new here and am due to start chemo. I had wide local excision on 28th Feb and lymph nodes were clear. I’m ER - and HER2 +. Having PICC line inserted on Tuesday and then will be booked in to start weekly doses of Paclitaxel for 12 weeks plus Hepceptin every 3 weeks for a year. I’ve been fine so far but now I’ve been for my first oncology appointment it feels much more real and I’m worrying if I can will still be able to carry on with some semblance of normal life during the chemo.
It’s good to know I’m not alone.
Hello all,
My first round of treatment I lost my hair but my eyelash and eyebrows survived. I am on my second round of treatment. I had my second treatment of taxol last week and my eyelash are now almost gone my eyebrows are already gone but I’m having fun with the temp tattoo brows from Amazon.
It is difficult for me to see my lashes coming out every time I wash my face or wipe my eyes with tissue (chemo side effect watery eyes). I cry seeing pieces of me fall away.
how do you cope with your hair loss?
Hello! It’s been a minute since I posted. Had my first chemo appointment a week and 2 days ago. Two days before I went ahead and buzzed my head. I wants to do it while I felt healthy and strong. I love it.
Feeling much better now than the first 3 days of chemo. The best thing I did the first days to combat the nausea was weed edibles to be honest! Helped me sleep too. Specifically asked for relief ones for nausea.
Since then I’ve been taken a mushroom blend: reishi, chaga, Turkey tail, cordyceps, Lion’s Mane, Shiitake all in a pill form. Doctor said they were fine and in total I’m eating 16 grams per day! I’ll let y’all know how they fare out. My energy has been better so far. Next chemo is Monday. I’m mentally preparing for a few days in the bed and hopefully looking forward to feeling a bit better as the week goes on. Sending all of you tons of love, patience, peace and healing!!!
A Lament for my hair
Farewell my long and shining hair,
With streaks of honey, red and gold.
I’ts all my natural colour, just the tiniest hints of grey, not bad for 65 years old!
It’s day 15 of Chemo 1 and I can see it’s time to part.
Longs strands, fall gently in my hands and I place them carefully down,
with reverence for their beauty, and sadness in my heart.
Those wretched drugs killed your well of nourishment and there’s nothing I can do.
Forgive me for forsaking you, but my ‘choice’ was do or die.
If I was to tell you otherwise then that would be a lie.
Farewell my long and shining hair until we meet again.
You’ve served me well in disguising my ears and hiding lumps and bumps I’d rather others didn’t see.
Now I must live without you. For how long? A mystery.
Perhaps you will return next Spring when the flowers bloom.
Let’s hope I will be better then and our life together can resume.
Until then I will protect the bed from which your growth has sprung,
keeping it cool on sunny days, and warm on Winter ones.
Replenishing your follicles with good food and moisturising creams,
so that when you do return to me it will be like a field of dreams.
Now tears are flowing down my cheeks, I can’t help but have s cry.
Farewell my long and shining hair,
It’s so very, very hard to say Goodbye.
Dedicated to all my brave fellow sufferers by Tulip 29
ER+/HER2+ malignant ductal carcinoma
Diagnosed 24 March 23
EC Chemo started 15 May 23
Hooray! Hooray!
Hooray! Hooray!
I’m feeling good today, for the first time in absolutely ages.
Saw the oncologist yesterday who listened carefully
to all my feedback from chemo 1 and took me seriously.
She answered all my questions and proposed an amended plan.
The tumour will be scanned again before cycle number 3 to see how well the drugs are working and if it has been shrinking.
Hats off to her, I have to say, I approve her line of thinking.
My chemo dose next Monday will be reduced by ten percent. That’s great!
Apparently I don’t need so much as I’ve been losing weight.
A lower dose sounds good to me, and that’s not all the news today…
The G-csf injections have been cancelled next time round
Hooray! Hooray! Hooray!
With love to all my fellow travellers. Wishing you all some good days along the way too. From Tulip x
Well, round 3 has kicked my 8rse! In some ways quite literally! I never know if it really is *the worst one* or I just forget how bad it was before after that brief week of normal before they hit you again ?
The same old symptoms of aches, fatigue, horrible headaches and generally feeling poop, coupled with thrush in my belly button?! At least my body is inventive in its curve balls! Ha
Eating has become a real struggle, no appetite and mouth pain/burning, means I’ve lost a load of weight which is probably the reason my fatigue won’t shift ?
also - this ones bugging me - isn’t it strange that once you have one diagnosis you notice things so much more elsewhere… but I have a strange pulling, tight feeling from the top of my left breast to my armpit - I’ve no lump that I can actively feel there but obviously the mind goes to lymphnode spread ? is this a symptom of spread? I have a mid treatment MRI next weekend so hopefully they’ll also check the nodes then? Or do I have to ask for this also?
Hi
I would definitely speak to your team about the ache/pulling feeling it might be healing or a weird side effect but they will investigate and reassure you
Belly button thrush that’s a new one, you’re unique lady!!
Each day at a time, especially post chemo, just rest, drink and snack
If big meals are too much have smaller plates of chopped fruit, salads with some tuna or chicken or smoothies are goid ( they help with the tingly tongue too)
Tescos have frozen smoothie mixed bags and I added frozen mango, mint and apple juice to them, whizz and drink
Take it easy you’re nearly there ?
Thank you @Curlywurly1 ?
I had a smoothie yesterday actually and it was so good as it cooled the burning in my mouth but also filled me up which was so good. Must go to tesco and get some of those bags! Thank you x
I’m sick of yoghurt, jelly and soup but we are going to have to start being inventive with mashing and over boiling haha.
Oh yes - my body doesn’t like to be normal…! But it does mean I have a funny story for people instead of the age old: “how are you”… “oh, same, exhausted achey and miserable” LOL
Morning everyone
@Crawfy sorry you’re feeling poop and sympathise with the sore mouth, it’s hard knowing you have to eat but everything just hurts and tastes not quite right!!
@Curlywurly1 great tip about smoothies, hadn’t thought much beyond milkshakes so will give these a go. X
I’ve had a real rollercoaster of a week. Last Friday chemo was postponed as my white blood count was too low again. Tested blood again on Wednesday and still too low, so I had to go in again yesterday first thing and they tested again. Waited around for the results and thankfully they came up just to the level where chemo could go ahead…cycle 2 now done. Wondering if anyone else has been experiencing this. I have to be honest I have struggled this week….I have felt physically fine apart from the normal tiredness and managed to work from home all week. But…mentally the ups and downs of not knowing if bloods are going to be ok and worrying if chemo is going to be postponed again is making me feel extremely down and emotional. I just want to crack on and get this chemo done and I still have another 6 cycles to go.
Hope everybody else has had a good week xx
Another really easy and lovely tasting smoothie is frozen mango, coconut milk( not sweetened) turmeric and ginger. I added sliced bananas but just throw stuff in
Ginger is so easy and good for the washing machine tummy
Pears and bananas and blueberry are lush too. I add mint or spinach to it sometimes
Aw sorry you’re having tough times @Crawfy and @Jo 71 ❤️ Sending hugs. The emotional ups and downs are every bit as hard as the physical ones, in my opinion. I think worrying about aches and pains is very natural and understandable. I asked my oncologist to check out my “other” breast at my last check up for a similar reason, an unexplained ache. It is always right to ask questions and get things checked.
My week has been all about hair. I finally lost too much hair and couldn’t wait for an appointment so my husband helped me shave the rest with the clippers. A bit sad but more comfortable and easier to manage, especially in this heat. Hey ho. So I took the plunge and went to the wig salon. It was a bit weird but a nicer experience than I thought it would be. They’re obviously very experienced with chemo patients. They tried to find the closest match to my usual cut and style (a short bob), and after a lot of deliberation I decided that I had found one which was good enough to give me another option for going out in public. My mum came with me to check it passed muster. I haven’t had the nerve to wear it yet but hopefully it will be useful for those times when I want to blend into the crowd.
Hugs to everyone who needs one. ❤️
@RosehipBandit well done for taking the plunge with the hair clippers and wig.
I have done the same recently with the hair and the wig but have to be honest not felt like wearing it yet. I think I am starting to get used to wearing different head coverings and seeing people when I go out so going to focus on building up my confidence with that for now…and it’s cooler option in this heat!! xx
I’ve decided I truly hate the 5 days of injections post chemo
I can handle the steroids and hot flushes/ sleepless nights/fatigue but these jabs are awful ( brain fog too)!!
They absolutely knock me
From pelvis and leg pain ( so much at the weekend I thought I was going to collapse on the stairs)
Paracetamol doesn’t get near so now on codeine
Only 1 more this cycle and then hopefully I’ll start to feel human…my husband has been a rock but he caught me blubbering after my hair started shedding last week and ever the practical said, ’it’s OK, you’re going to be ok and I love your headbands, hats and turbans. You’re beautiful ?’
I’m going to persevere with the cold cap but think I’ve lost about a third of my shoulder length hair so going to have it cut/trimmed to help my anxiety about losing it
Roll with it ladies… xx
Dear Curlywurly1, Completely agree with you about the injections and I am a type 1 diabetic who is used to injecting 5-7 times a day (but not with such big needles). I was given 5 injections to take after EC chemo 1. They gave me dreadful pains in my sternum and jaw and dangerously low blood sugars at night to the extent I was at risk of a diabetic coma so the emergency line told me not to take the last one. With only 4 injections all my bloods were good for chemo2.
The oncologist did not prescribe the injections at all after Chemo2. However my neutrophils were too low (0.9) last Friday so Chemo 3 which I should have had yesterday has been deferred for a week.
Why not ask your team if you can have fewer injections? You might be able to get your bloods back up with three. Always worth asking.
I wish you well. With love and hugs from Tulip x