July 2021 Chemo Starters

[katenonip]

Hi Corina,

Thank you for your message. I hope you are enjoying a quiet weekend.

I have been prescribed Omeprazole on Friday and yes it is doing it's thing which is wonderful.

Sorry to hear that you had covid and your sense of taste is still a but rubbish.  It can't help with an appetite either.  How many rounds of treatment are you having?  It feels forever to think of 3 years time.  I has horrid hot flushes all night and spent most of the night awake so feeling knackered today.  Hope you are ok xx

[Corina]

I’m sorry to hear you’re going through this tough times, I didn’t fully appreciate that there are different treatments for different stages. I hope you have a safe and speedy recovery. 
Did they give you Omeprazole to take with your meds? It’s supposed to line your stomach and ease the heartburn caused by the drugs. 
I guess with so much drugs and toxins in our bodies we are bound to have these side effects. 
My problem is that after Covid I developed smell disorder and most foods smell and taste pungent especially onion and garlic so it’s been very hard to eat for past few months and now with Chemo it seems to have got worse. I don’t know which is worse cancer or smell disorder! ☹️
Here’s hoping for better and brighter days for all of us xx

[Em77]

@katenonip So tired from today’s one but that’s it so far. Slept on the sofa for a couple of hours. 3 done 13 left 😁

I found drinking milk and sometimes vanilla ice cream helps with the heartburn. I have 2 bottles of gaviscon here which I bought when I had it horrific cycle 1 but weirdly the milk helped more. X 

[katenonip]

Hi Corina,

Thank you for reaching out.  Yes I found the first 24 hours the worst for feeling sick.  I suppose apart from a hangover I have never experienced anything like it as had no morning sickness when I was pregnant.

So I am Her-2 positive, Stage 1, grade 3, had reconstructive mastectomy 12 weeks ago.  I start Herceptin in round 4 for a year.  I also have to be placed into the menopause for 3 years so that I can be given the biosopsonates.  Brutal as now stops any future babies (we have a 5 year old and I am 42). So I have to have the goslerin implant monthly for 3 years.

The chemo nurse had words with me this week about hydration as they couldn't draw blood from my PICC.  I have lost 4 lbs in a week so am cooking onion bhajis and curry for dinner, not sure it will help the heartburn but will add calories. You just can't win can you.

Lovely to hear form you.  Rest up and thank you for your kind words.

xxx

[katenonip]

Hi Emma,

I heard that the first one can floor you mainly because the dosage isn't quite right for your body measurements.  I suppose a lot can change from seeing the oncologist to the first round. I have just picked up some meds for raging heartburn, apparently another lovely side effect of the EC/steroid combo. Fingers crossed that works. Your treatment sounds hardcore, you sound like you are nailing it with great strength.  I wish you a happy weekend with lots of rest and feeling good. xx

[katenonip]

Hi Jennet

I am glad you are doing well after round 2, I feel like I have contacted a doctor everyday this week for change of meds or weird side effects.  I did the cold cap for the first two rounds.  I had my head shaved last Saturday, it was actually really nice to not have anymore falling out.  I get more sad faces now but to be honest I think I was pushing myself too hard trying to be 'normal' with being a mum and still working so it is quite nice that people now actually can see that I am poorly and not superwomen.

Yeah, I was told I will only be on annual mammograms.  Seems so weird doesn't it to not get a full MOT form cancer after going through all this.

I hope you are resting well and taking plenty of time for you.

xxx

[Em77]

@Jennet R u sure re scans? I had an ultrasound on Tuesday (before cycle 3) to see if any change. It started at 1.7cm and now is 1.4cm, it’s nice knowing what we are going through is working. I would ask your oncologist again (unless they did my scan due to being triple negative) 

[Jennet]

Hi @katenonip I hope you’re feeling better today. I had my second round of EC on Tuesday and am just exhausted but otherwise fine. 
Hair all over my pillow so the trauma of cold-capping might have been in vain,

my oncologist said I won’t be having any scans until after the chemo- how do they know if it’s working then?

Bit annoying if I get to round 6 and it hasn’t done anything…

strength and hugs to everyone xxx

[DAB72]

@sharlea 

Good Luck today Sharron!!! Hope to hear from you in a few days once you’re feeling up to it. Hope the side effects are better this time too, now you have the new dexamethasone regime. 

my tooth problem seems to be improving but all my teeth and gums feel super sensitive at the moment. I noticed a bit more hair than normal falling out when I washed it yesterday so I think i’ve joined the path to baldness….

🍀🍀🍀 see you on the other side xx

[Em77]

@katenonip It’s weird how each cycle is different. My first was terrible and I felt drunk 🤪 the nurse had to help me to the car park but the 2nd one was completely different and I came home with loads of energy.

Your sleep should get better once you have finished all the drugs they give.

I have EC once every 2 weeks and then it changes to weekly with Carboplatin and every 3 weeks Paclitaxel thrown in (I think that’s the way round)

[Corina]

Hi Katenonip

Sorry to hear your chemo rounds are rough, I had my first one a week ago and for five days I felt very tired with no energy or appetite whatsoever. The first day was awful feeling sick but the meds helped. 
I noticed you mentioned you were given Bisphosphonate. I thought this was something they would prescribe to post menopause women (like me) after the chemo treatment.

Hope you feel better soon, drink lots of water and eat fruits and vegetables 😊 xx 

[katenonip]

Hi Emma, 

Nice to hear from you. I had my second round last Thursday, it hit me really hard this time. I think I thought I’d be ok until cycle 4, boy was I wrong. I think it might have been the biosophonates which they did over 15 mins but I’ve been really rough. Currently laying here not being able to sleep. Not slept properly since second round. Had last injection yesterday so am hoping I am now on the up ready for round 3. How often are your cycles? I started 7th July. Best of luck for tomorrow. Are you having EC? X 

[Em77]

Hi @katenonip , this is the July forum. I had my first cycle on the 9th July and my third one is tomorrow.

How are you managing? 
Emma 

[katenonip]

Hi there 

I am trying to join the July chemo started page but no idea what I am doing. I started 7th July and would really appreciate some friends going through the same thing as quite frankly this is hell and we all need a hug xx 

[sharlea]

Hi Dawn,

Hope things are going as well as can be for you.

Hopefully your wisdom tooth is starting to settle down and the antibiotics doing their job. I was told by the nurse to ask for an urgent temporary fillin, with no invasive treatment. I saw the dentist on Monday and ended up having 2 temp fillings. At least that will help prevent infections.

My hair started to come out last Thursday, and it now feels very thin, but still have some. Looks ok with a headband for now. Bit of a tender scalp now and again.

My oncologist phoned this morning and we had a good chat. The chemo will remain the same but she is adjusting the steroids, so to give a gradual reduction instead of the 8 each day for 3 days. She called it the 3,2,1 approach. So, on the 4th day will have 3, then next day have 2 then following day only 1. Should stop the drastic change from feeling ok to totally whacked. Also giving a liquid morphine to help with the pain during the first week, can take when needed and will also help to get a better night's sleep. Yup, a common side effect from the TC chemo is to feel like bad flu pains combined with a bout in the boxing ring.

We agreed it was manageable, but no picnic. To drink between 2 - 3 litres daily and to rest as much as possible. That the tiredness may well be accumulative, as would taste changes. What joy! At least I still have a sense of humour, I told her.

Bloods done this afternoon, hopefuly should be ok, And the nurse admired my portocath, say it looked very good. She asked if it had given me any problems, well it does hurt now and again at the jugular insertion point. What was interesting, was she said that chemo slows down the body's healing process.

Take care, and let me know how things are going for you too,

all the best,Sharron, xx

[DAB72]

@sharlea 

hi Sharron,

how are you doing? I hope your oncologist call and bloods go well today!! How’s your tooth?

ive also had a tooth problem. I have a wonky wisdom tooth that catches food easily. Unfortunately, my gum has all swollen around it and despite regular salt washes is very painful. I contacted the oncologist nurse on the urgent number I was given, and now have antibiotics, as of yesterday. Wondering now if I should contact my dentist? 

When did your hair start coming out? Mine still seems intact at the moment but I know I’m a week behind you so expecting it to happen soon. 

anyway good luck for today and fingers crossed Friday goes ahead as planned. Let me know how you get on. 

all the best 
Dawn x

[Corina]

Thanks Sharlea, I’m so glad to hear that things get better between cycles. Don’t want to speak too soon but today I am feeling better. I had to force myself to eat yesterday so maybe that’s why, I can’t afford losing more weight and don’t want my treatment to be delayed. I can’t wait to get out for a bit of walk and fresh air. 
Wishing you and everyone well xx 

[sharlea]

Hi Jennet,

Hope your bloods are good, and wishing you all the best for round 2.

[sharlea]

Hello Corina,

Sorry to hear you’re feeling tired. Best to sleep as much as you feel able. Rest up lots too. As for taste changes, yes, I had that, and it’s very strange because normally nice food can taste bitter. Best to eat little, very nutritious food, as often as possible. Can you eat a spoonful of honey, or small bowls of soup? 

Yes, the take home meds help with side effects, they are normal, well, at least I have been given quite a few.

As for things getting better between cycles, well, I can only speak from personal experience, but I can say yes! I felt very tired and achey the first week, started to feel bit by bit better each day the second week, and over this last weekend feel back to my pre chemo self. I would really recommend drinking lots more during the first week, more than 2 litres a day, to help flush.

wishing you all the best

[Jennet]

Hi @sharlea 

@I’m having round 2 on Tuesday if my bloods are ok tomorrow. EC (2nd of 3 cycles) and my hair is coming out in handfuls so not at all sure whether to stick with the cold cap. Hope the next round goes well for you, and for everyone having chemo this week

Its helping us to get better xx

[Corina]

Hello everyone

Started my chemo on Wednesday, the injection went well but as soon as I got home I felt rough and went straight to bed. It’s day four and I’m still feeling very tired with no appetite want to sleep all the time. Things are complicated with my long Covid smell and taste disorder which somehow has got even worse with the chemo. I managed to have some mash potatoes and carrots earlier, my family are really worried as I’ve lost quite a bit of weight. Has anyone else’s taste changed too? Will things get better between the cycles? I really hope so 😔

They gave me anti sickness and dexamethasone to take for two days after the chemo is that normal? Anyway I’m sorry that everyone is going through theses tough times, I’m thinking of you and wishing you all the best xx  

[sharlea]

Hello and hope everyone is coping with their chemo.

Is anyone having their second round this coming week?

I’m on the TC (docetaxol and cyclophosphamide) regime, having already had my lifetime amount of that Epirubicin, back in 1994, and found the first week after the first chemo not the greatest experience (understatement). Despite extreme fatigue and pain, it was manageable, with loads of rest and sleep and painkillers. Hair is falling out, scalp feeling tender, and a tooth is crumbling, so urgent dental appointment tomorrow, for a temporary filling with no invasive treatment.

Hopefully port flush and bloods on Wednesday afternoon will give the go ahead for round two on Friday. Oh, and a phone assessment with my oncologist on Wednesday morning. 

Take care and wishing everyone all the best, xx

[veggiecaz]

Hi everyone 

Hope you’re all ok. 
Thanks for sharing how you’ve been feeling @SeaUrchin great that you’ve been out walking a little. Are you starting to feel more like yourself everyday? I hope the cold cap works and it’s too much to cope with. How are you feeling about round 2? 
I went to the same day emergency care at my local hospital yesterday, the headaches had taken over and were draining me. Sounds like I’m suffering with migraines (never have before) so I’ve now got some strong painkillers and actually slept well last night 💪🏻
I’ve learnt that we shouldn’t suffer in silence. So if you’re not coping call the helpline is my best bit of advice. 
Im having 6 cycles in total 3 FEC 3 T. 
and @VioletLizzie its definitely not just you wishing this year away. I understand the hair loss sadness it’s part of who we are ❤️ 

sending love to everyone x x x

[Em77]

@VioletLizzie remember your hair will grow back, it’s only temporary. I named my Picc (he’s called Jack) I found it easier. 
I’ve seen something on Facebook about a mastectomy pillow (I’ll try and find it) 

stay strong x 

[VioletLizzie]

Hi - I'm day 16 -and hair started to fall out big time today - bit of a weepy day to be honest. PICC line goes in on Wednesday and hopefully 2nd EC on Thursday.  Have seen breast surgeon again - I already had WLE - but margins not clear so need mastectomy - and they want to do it within a few weeks of chemo finishing ( I have 2 more rounds of EC then Herceptin and Docetaxol x3). Keep thinking that I am the only one wishing for the end of the year as it will all mainly done by then.

Feel slightly more prepared of what's to come this time - anti sickness and laxatives at the ready!

Thanks for whatsapp invite - friends and family are being brilliant - but grateful for you all being there as well.  Take care 

[SeaUrchin]

Hello Everyone 

I hope you are all keeping well as much as you possibly can. 

It is day 11 first round of post-EC for me. Day 1-6 was a blur with sickness and fatigue. I started to feel better from day 8. Still suffering from tiredness, sore mouth & throat, headache, and occasional sickness. I had my anti-sickness meds changed after I finished the steroids. Metoclopramide wasn't sufficient. Instead, I was prescribed Cyclizine Hydrochloride which works well. Paracetamol, Gaviscon & soda water are my best friends atm😆

I'm trying to go for a short walk every day, which some days is a giant effort but it is helping me. Someone mentioned in this forum that feeling like 100 years old. That is how I felt last week😂

After reading other people's cold cap experiences, I wasn't going to have one. However, when I arrived at the hospital, the onco nurse and this lovely care assistant had persuaded me to try it for the first time. I did use it and it was ok. I probably will use it again until all my hair falls off, which I already had it cut short. My second cycle of EC is 11th Aug.

@Jennet I'm still doing my own food shopping and the visitors all take lateral flow tests before they visit us. Not sure about eating out yet. 

@veggiecaz I hope you will feel better soon. You will start seeing the improvement soon. How many cycles of chemo will you be having? Are you having pre or post-surgery chemo?

I hope it will get easier and manageable as we all progress with our sessions.

xxx♥️xxx

[veggiecaz]

Hi SeaUrchin 

ive been writing on another July chemo starter chat (didn’t realise there are 2) sounds like we have very similar diagnoses. 
how have you found your first EC? 
Hope you’re feeling ok. 
Big love to everyone on here ❤️ 

[Jennet]

Hi @Em77  I think this is pretty much all we can do. Be careful, encourage other people to be careful too - but life goes on. 

[Em77]

@Jennet 

It’s such a tough one. I must admit I don’t go out as much as I used to, but when I do I am extra careful. I have a 13 year old daughter and can’t keep her home all the time. She takes a lateral flow test twice a week and knows to check with her friends they don’t have colds etc before seeing them. If I have a friend coming over to see me they take a lateral flow test before coming without me even asking them to (I would never have thought of asking them to)

[Jennet]

Hi @Em77  how are you doing?

i wondered what everyone is doing in terms of going out, shopping and eating and the like.

i received an official letter telling me I’m clinically extremely vulnerable- jolly good but no real advice about what to do. In a meeting this morning a colleague said he’s not going anywhere because his wife is CEV and he doesn’t want to put her at risk - well my other half has been doing the shopping, and sometimes I go with him to get out of the house but mostly I’ve been going on walks where there aren’t many people. Should he be doing a lateral flow test when he comes back home? 
i want to see my granddaughters who are 3, and probably little vectors of infection.

Their mum (my daughter) is worried about exposing me to bugs - how are other people managing all this?

[Em77]

Hi,

Just wanted to check in and see how everyone is doing X 

Emma 

[sharlea]

Hi Dawn,

I’m sorry to hear your first treatment didn’t do so well, but it will have been noted down by the nurses. And keeping yourself warmed up should help.

This tiredness isn’t that great, is it? I have been having lots of rest and naps during the day, but have a need to walk around a little bit to stop aching. Small improvements each day. Your flushed face sounds weird, maybe you should contact the nursing team, it might be a slight allergic reaction.

Glad to hear you don’t have to do the injections. They are not bad, but have caused aching, which is manageable with regular ordinary painkillers.

I certainly don’t want this to get any worse and not looking forward to the next round, on 6th August, but at least now have some inkling of what to expect. I have a phone assessment with my oncologist of the 4th August in the morning, then bloods and portacath flush in the afternoon. 

Hope you start to feel that little bit better each day,

best wishes,

Sharron

[DAB72]

Hi @Em77 , thank you for your reply!

The PICC line hadn’t really been suggested, I assume probably because my treatment is very minimal compared to most- just 4 x TC over 12 weeks. Just the thought of it makes me feel a bit queasy too but I might talk to my nurse about it. 

I hope you are doing ok!! 
Dawn x

[Em77]

Hi @DAB72 I’m sorry you had a bad experience, regarding your veins have they suggested a PICC? I was told to have one (I hate things like this) but it is a g-d send. Treatment is so much easier and bloods can be taken from it.

I am having EC once every 2 weeks, my second cycle has been less side effects (so far) and I am into day 3 since chemo as well. I’m also very hot but it’s very humid lately even with the storms. 

hope you get a better sleep tonight X 

Emma x 

[DAB72]

Hi Sharlea,

thank you for your reply last week!

I hope you are well and have continued to make progress to feeling normal again!

My first treatment on Friday didn’t start well with two attempts at inserting the cannula as my veins weren’t great- I think anxiety caused my blood to go to my core 😂. Unexpectedly, I  fainted which made me feel awful even before the premeds 🙄. Thankfully by the end all was well and managed the weekend with out feeling too nauseous. Didn’t sleep well the last two nights and had a bad headache Friday night/Saturday but that passed. Feel quite tired but main weird side effect has been a burning hot flushed face although temperature been normal. 
Having worried about the injections I’ve not ended up having to do them!! I questioned it as I’d been told by my nurse I’d get them but apparently sometimes they don’t give them on first treatment just to see how you recover with out them. I guess I could get them next time. 
Not looking forward to round two in three weeks time - need to make sure I’m super warm to get those veins pumped! 

Let me know how you’re getting on. 
best wishes

Dawn x

[Em77]

Day 3 of cycle 2. Only side effects I’ve had so far are trouble sleeping, emotional (think due to lack of sleep and tablets) dry mouth and a bit lethargic. Hoping this is it. My hair is coming out but no patches showing (I have very thick hair)

Hope everyone else is ok

Emma x 

[Em77]

@Kisekae Cycle 1 is did the injections in the morning, yesterday the nurse told me to do them in the evening not the morning. Not sure when you were doing them. I have 2 more EC sessions then I go to weekly with something saying C&T (shame not g&t 🤪) and that’s for 4 months 😩

[Kisekae]

I'm so pleased to hear you weren't nauseous on your second round, that gives me hope!

[Liswa]

Thanks @Em77 that is reassuring. I guess it's fear of the unknown!

My next chemo isn't until 3pm so will definitely try and eat something again beforehand. I ate about 4 ice lollies during the infusion and my mouth seemed to get off lightly! Bonus about getting some free hospital food though! 👌

Yes my hair down there has started coming out! I was hoping my leg and underarm hair would be sooner 😂

[Kisekae]

I cold capped as well and as of yesterday (day 17), my hair down there has all been falling out. Unfortunately the legs and armpits are staying put 😛 I've had a bit of hair on my head come out but not enough for me to stop the cold cap.

[Kisekae]

I'm on the injections for 7 days and also the steroids for 2 days. I'm glad I only take the steroids for 2 days as I've never eaten as much as I did during those days, my appetite was insatiable!

The injections themself are bareble but my muscles were so sore for a few days, I had spasms in my back that were horrendous but went away the day I stopped the injections.

I'll be starting it all over again on Wednesday. Dreading it to be honest. I'm having 3 EC so this will be the second (followed by 4 Docetaxel). 

Good luck to everyone with upcoming chemo.

[Em77]

@Liswa  Morning, please don’t worry about your next cycle. I think each one can be very different. My first cycle I was very nauseous and ended up being sick the same day, yesterday I had cycle 2 no nauseous what so ever just couldn’t sleep and kept needing to wee. I’m not sure if it helped I was there earlier and the nurse forced me to eat a cracker and cheese before starting then when chemo was finished the lunch trolly came round and she made me eat a  sandwich, yogurt and tea and biscuits 🤪

Also had a foot massage. It was like going to a spa day as the cold cap cooled me down 🤣

I wasn’t planning on using the cold cap again as my hair is coming out but the nurse said as it’s so thick my hair I should continue as it’s not noticeable (also I don’t have my wig yet).

Anyone else started to lose hair in the never region? 😳 I was hoping leg and underarm hair would go first to make like easier 🤣🤣

[Liswa]

Hi all!

I shaved my head on day 14 as was starting to notice my hair was so brittle!

I picked at a few white hairs like I'd normally do and they just came away so easy. Also, in the shower plenty was coming out as I washed it.

I must admit it's been so much cooler in this weather 🤣 I went out yesterday too and apart from the odd lingering look no one really bothered 😁

The hospital didn't mention any injections to me so I didn't have them.

Am now on day 17 and starting to get nervous about my next cycle 😔 the first one was manageable but am worried about them getting worse.

Hope you're all well,

Lisa x

[Corina]

@Em77 thanks, that’s helpful and reassuring ☺️ 
On my very first visit with Oncologist I decided not to go for the cooling cap, it sounds like a lot of extra process and stress. I think those who choose it are brave. I’ve cut my hair short today and will wait and see what happens. 
Will let you you how it goes. 

[Corina]

Thanks Jennet. My first three cycles are also EC every three weeks on the ward. They said they would go over everything the day before my first treatment. 
I didn’t realise we had to do the blood cell injections ourselves. 🙁 

Thanks again 

[Jennet]

Everyone is different but my regime (EC) was IV drugs on the ward (epirubicin and cyclophosphamide) then dexamethasone for 5 days at home, plus anti-emetics, plus filgrastim injections Days 2-5

Questions are good - best way to make sense of all this.

[Em77]

@Corina 

hi, they injections I believe are to help your white blood, I had to do it over 7 days. I hate needles but found this manageable. I didn’t know about them till after chemo the nurse went through all the tablets.
The thought of chemo is definitely worse than actually having it. Everyone seems to get different side effects. Just remember to write everything down. Are you planning on using the cold cap? 

[Corina]

Hello everyone 

Reading your posts with interest as I’m starting my first EC treatment next week. Quite nervous and apprehensive how I will react but I’m hoping and praying it won’t be as bad as it’s in my head! 
Many of you are talking about injecting yourself can I ask what this is for? I don’t think I’ve been advised about this from my team. 
Also do we need to take dexamethasone all the time and is that the reason for weight gain?
Sorry about all the questions 😊

Thanks x 

[Jennet]

Cold cap might be welcome coolth.

I'm glad you said that about putting on weight...not that you are, and I am sure you're not, but just people say to me on Zoom calls 'you look so well!' meaning 'why aren't you thinner?' It's disheartening because my diagnosis of diabetes coincided with the cancer diagnosis (two for the price of one, really) so I have been trying to get blood sugar under control along with chemo and steroids, and basically feeling like not eating anything. And still the blood sugar is high. The diabetes nurse suggested I might be stressed....well, yes, a tad.

Good luck for Friday x

[Em77]

How’s everyone doing?

I’m back from having my Covid & blood test  and seeing oncology. Now having to isolate till Friday for cycle 2.

These last 2 weeks still seem surreal. I was only sick the first night, tired & constipated the first week  (sorry if tmi 🤪) and just when I got my energy back I had a sore throat (used difflam which was incredible) I hate needles but have managed the injections myself. The oncologist seemed happy but did say if I start to feel sick after treatment again to take my tablets early. She’s booking me in for a scan in a week to see if it’s working. 
I’m still undecided if to use the cold cap on Friday or just let the inevitable happen (it may be a g-d send in this heat.

Anyone else feel like they were pregnant, I kept having cravings for things! My weight is going upwards which I’m not happy about but I guess that’s to be expected (especially as I stopped smoking before chemo started 😳)

Emma x