July 2021 Chemo Starters

[sharlea]

Hello DAB72, I hope all goes well for you on Friday.

The actual chemo, last Friday, along with the pre meds, went well for me, and I felt ok, but a bit tired, over the weekend. The injections are fairly easy to do. Just pinch an inch and follow the instructions, don’t feel a thing, apart from the pinch. I found it easier in my tummy, about a couple of inches from belly button, as that’s where most able to pinch. My thigh felt too tight when pinching.

I started to feel very tired, just plain whacked, on Monday morning. Not really able to do much apart from lie down on sofa. Plenty of rest and short naps help. My first injection was Sunday evening, and I think a combination of the chemo kicking in along with the injection, gave me some bone, muscle aches. Mainly in ankles and shoulders, even though was told it would be in lower back and hips. I’m still taking regular ibuprofen and paracetamol to keep things manageable. Remember to take temperature before taking paracetamol if you do start to feel feverish.

Doing a poo is a bit here and there, and rather pongs. Sorry, but best be forewarned!

Started to get a little more energy yesterday, and after loads of rest, frequent, small amounts of food, am starting to feel loads better this morning.

Wishing you all the best, and please feel free to let me know how things go for you, when you feel able. Sharron, xx

[Jennet]

@DAB72  re the injections, I was worried about them too but actually it was not a problem at all. Provided you have some fat - this hasn’t been an issue for me! Tiny tiny thin needle, over in a jiffy. 

[DAB72]

@sharlea it would be good to hear how you are getting on as I start my first TC cycle this Friday. It’s nice to find someone having the same drugs as many on here are having different.  Now starting to feel a bit nervous and not sure how I’m going to get on with injecting myself!! Any tips and advise would be greatly received. Thank you and wishing you all the best over the coming days and weeks 

Dawn x

[VioletLizzie]

Dear Jennett

I'm Day 5 post first chemo - just been overwhelmed with nausea and constipation ( yes,  both ends going at the same time!) Have felt so tired - like I've done a long haul flight and kept going the next day! Appetite all over the place - craving food and not wanting it when it arrives. Drinking is hardest = mouth feels awful - using biotene mouthwash - which is like rinsing with spearmint chewing gum flavour - but it strangely feels very soft. Yes, also finding the injections hard. Yes - my second EC 5th August. 

With very best wishes to you all - thanks for being there. 

VioletlIzzie

[sharlea]

Hello Kiskae, and so pleased to hear you are feeling better, after a rotten first week, sounds like you had plenty of side effects.

I keep feeling tired and achey but am taking it real easy. Only started chemo (TC) on Friday, so expect this week to be a bit useless, and then things might pick up. Knowing you felt a bit better daily realy helps, so thabnks, sharlea, xx

[sharlea]

Hello Jennet, and glad to hear you are feeling a bit more like yourself. Also, done the last of those injections. Shame you suffered delayed nausea, but good the metoclopramide helped.

I started my first dofe, of TC, late Friday afternoon, and things only started to kick in yesterday. Those injections, whilst they don't hurt, sure pack a bone aching punch a few hours later. Or is that the chemo? Rest, rest, feeling tired and whacked now, more rest. light meals, but really don't know how you are managing work. Is it essential? Yes, maybe you aren't going all gibberish, but running a meeting on chemo could wear you out. Take lots of good care, sharlea, xx

[Jennet]

Thank you @Kisekae I am finding it so helpful to read other people's accounts of their chemo journeys so thought I'd post where I'm up to.

Day 8, and I was congratulating myself for not getting sick at all, then yesterday nausea started. Is it delayed like that for others? I took a metoclopramide and that has helped. 

Did the last of the filgrastim injections last night - now have a lovely bruise on my tummy where my technique was a bit cack-handed!

The worst for me at present is the tiredness - my legs are made of lead and as I posted early, our house has five storeys so forgetting my book by the bed (at the top) when I want it to read outside is a real annoyance. Fortunately I can't carry the hoover upstairs either - housework has gone to pot for a little bit.

Today I am feeling a bit more like myself and am doing some work, running a meeting and I think not talking complete gibberish. Next round of EC is 3rd August which I am rather dreading but has to be done and I am telling myself it will be one third down, two thirds to go...

Anyway, if you're on day 1-8 of chemo, my experience is that it gets better. Resting helps a lot - I'm taking frequent breaks throughout the day, especially in this heat.

Keep going and love to everyone xx

[Kisekae]

Hi all, I'm day 13 now and feeling great. The first week was horrible for me, nausea, vomiting, fatigue, headaches and not being able to think clearly. It got a little better with each day but yeah, nearly a full week before I felt like I could do normal activities. 

I also got back pain from the injections but that stopped as soon as I stopped the injections (day 7). 

No hair loss, no mouth ulcers. 

I'm really hoping the next cycle isn't as harsh in the first few days (I actually ended up in a&e the first night), I've got a couple different meds to try. 

I got a picc inserted today which will make things better for me as well, the procedure was super quick and painless. 

Hoping you're all doing well.

[Shi]

Hi Lisa, just keep checking out for thrush mouth, chemo can cause this and it will require antibiotics ❤️ Always ring your unit to make sure all ok, everything is not like normal during chemo, you could need antibiotics for something. Keep safe 💕💕✨✨Shi xx

[elless]

Hi Jennet.

I have one flight of stairs more than enough. Takes so much energy any day.

I refuse to spend money on a stairlift. That's admitting I'm over 80!!

If you can  do all your upstairs tasks then come down and only go up again at bedtime. Takes a bit of thought and planning but it helps a lot.

Wish you well

[Liswa]

Hi all

I'm on day 11 since my first EC session. I think by day 7/8 I was feeling mainly "normal".

My main side effects were tiredness, a bit of nausea but only sick once, a weird furry taste in my mouth and a general feeling of uncomfort like I couldn't settle or concentrate?!

I've also had a headache the past few days, not my usual energy levels and being tired earlier at night time.

It is definitely manageable I'm just nervous about varying side effects as I continue and the cumulative effects of it 😕

Still have no signs of hair loss yet either!

Hope you're all OK,

Lisa xxx

[Em77]

@Jennet 

I definitely started to feel myself once I finished the tablets. Just try not to overdo things and listen to your body. I had my last injection yesterday (yippee) I hate needles so all of this is a learning curve for me 🤪 
Im so pleased my heartburn has stopped but now my throat hurts when I swallow.

x 

[Jennet]

Can’t work out how to do a new post on iPhone so replying to myself (not a good sign I know). But just wondering how you’re all getting on with chemo?

today has been the worst day for me - wiped out, legs not working, horrible taste in mouth.

the 3year old twins came over and we managed a picnic but I was too exhausted  do more and that made me cry so…

hoping that now I’ve stopped the steroids things might look up a bit. Taking a bit of time to get used to injecting the filgrastim but consoling myself that learning new skills is something all post menopausal women must do to avoid dementia so there’s always an upside.

best wishes to everyone xxx

[Jennet]

Hi @SeaUrchin 

Good luck with the chemo on Monday. I genuinely think sometimes the waiting is the hardest part.

I had my first dose of chemo on Tuesday (4 days ago). So far okay. I feel like I have a hangover, woozy, but as the cancer also precipitated hyperglycaemia it could be that. Everything has slowed down and my legs don't work - my house has 4 flights of stairs to get to bed so that's been fun!

I know everyone is different. But I am finding getting out for a (slow) plod in the sunshine has lifted my mood a lot.

My PICC line leaked a bit so they sluiced it and changed the dressing and that has worked. Desperate now to get my waterproof sleeve so I can have a shower!

sending best wishes and sisterly solidarity to everyone going through this right now xxx

[sharlea]

Hi, I’ve just returned from my pre assessment, was given steroid tablets and told will be starting TC tomorrow afternoon. Not FECT as previous chemo was ECMF, and have had my lifetime dose of that Epirubicin. Relieved to find out at last, even though so close to the day!

[SeaUrchin]

Hi Everyone

I have been following this group in recent weeks and finally had the courage to join. I was diagnosed IDC which is ER-positive and Her2 negative. I had a lumpectomy with full lymph node clearance in June, followed by second surgery for margin clearance.

The port a cath was fitted yesterday and the first chemo session is next Monday. I will be having 3 x EC and 3 x Docetaxel. To tell the truth, I'm anxious about the next stage of my treatment. 

Thank you all for sharing your journey, it is really helpful.

xx

[Em77]

Hope all went well for you today X

[VioletLizzie]

Hi 

Thinking of you - I'm should be on first dose of EC on Thursday.

Will catch up with you on the "other side" next week.

[Kisekae]

Hey, thanks for messaging. I'm having my picc put in next week and I'll be glad when it's done. 

I'm on day 5 now, it's been a long and exhausting few days, much of which is a blur but I'm coming out the other side and starting to feel like myself again. 

The actual chemo session isn't bad at all and goes pretty quick. Best of luck for tomorrow, message me any time x

[Jennet]

Hi @Kisekae @I had my PICC line inserted today. It really didn’t hurt - I honestly think the thought of is worse than the reality. Now getting used to it and starting chemotherapy tomorrow. I hope your treatment is going well x

[Em77]

good luck today (not that you need it) the picc line does make having the treatment so much easier. 
When you get the EC the nurse is with you the whole time which I actually liked.
Im still trying to decide if to use the cold cap again or not (I’m still embarrassed how drunk I felt after the treatment 🤦🏻‍♀️)

thinking of you x my mantra is chemo is my friend 

[Jennet]

Hi everyone

I start chemo tomorrow, and am off today to get a PICC line inserted.

I have rubbish veins at the best of times and this isn't...but hey ho.

I am Her-2 positive and ER positive so am starting with chemo, then surgery further down the line. Tips and hints on these forums are fantastic as I have no clear idea of what to expect and a lot of anxiety. Thank you to everyone taking the time to post their experience.

I am planning not to try the cold cap because I've been told that EC causes your hair to fall out anyway - so opting for a buzz cut later this week and have ordered two wildly expensive beanie hats (my husband bought them for me in fact - he desperately wants to do something to help. I have suggested getting his legs waxed so he can share the pain...)

Look forward to sharing my journey too, in hopes it will be helpful for others

Jennet x

[Jennet]

Hope today you're feeling a little better xx

[Em77]

Well yesterday at 12.45 was my first chemo session having EC, unfortunately they were running late but I didn’t mind.

When I was called through a lovely nurse led me to my seat. I had decided to try the cold cap so we tried on all the sizes for the best fit. Medium was the size we went for. The nurse sprayed my hair with water and put conditioner in yet. Once all was set up it was turned on. You need it on 30 minutes before chemo starts. I was also given anti sickness tablets 30 minutes before hand. After 10 minutes I called a nurse over to check the cold cap was working as I didn’t find it unbearable like I had heard from others, it was working. Another nurse came over after the 30 minutes and realised one anti sickness pill wasn’t given to me so I had that as well. The nurse was with me the whole time pumping the chemo through, it only took about 30 minutes. The cold cap still needed to be on for another hour to hour and a half.

Quite quickly I felt wheezy and the room was spinning and felt very nauseous. I was given another anti sickness tablet. 
With 20 minutes left to go till it had been another hour and a half I had to take the cold cap off due to feeling unwell and I was starting to feel claustrophobic. 
The nurse helped me to the loo, remember if you are having EC your wee will be very red. 

I then left the hospital. Dozed on and off a few minutes at a time as the nauseous kept waking me. 2.40am husband called the beep number as I wasn’t getting any sleep. I so wanted to be sick but wasn’t being sick. He was told to give me some of the anti sickness tablets that I had brought home to settle my stomach. Within 10 seconds of taking them I was sick. Wow I felt so much better and then managed to sleep. 

Today I am very tired, can’t say if it is due to lack of sleep or chemo or both. 
Not sure if I felt sick due to one anti sickness tablet being given late.
Tomorrow my husband has the pleasure of injecting me in the stomach which is part of the medication I brought home.

Sorry for the long essay

How’s everyone else doing? Xxx

[VioletLizzie]

Hi - yes I'm having EC  (3 cycles ) then doxcetaxol ( 3 cycles ) and Herceptin for a year

First dose next Thursday 

Have asked for Port "but we don't do it at this hospital" - every time I have been to the hospital its such a fight to get everything.  I don't want a PICC as have disc damage and can only lie on my right side - Breast cancer is in left breast. So thought that PICC would get in the way.

Hair being cut on Monday - this for me is the worse bit - feel like Ann Boleyn going to beheaded!

Have already had Wide Local Excision - but need to have more surgery before radiotherapy. Been shopping today for lots of fruit and veggies to make into smoothies. Have been freezing grapes and ice cubes with mint in.

[sharlea]

Best wishes for today, and hope it all goes smoothly. I’m feeling a bit concerned about starting next week,  but trying not to get overly worried. Eating lots of greens!

[Em77]

Yes, it’s tomorrow 😳 got to be there 12.45 and I’m going to use the cold cap. I found out on 18th May the biopsy results so I guess I’ve been waiting a while for the day of treatment to start.  How are you feeling about next week? 

[sharlea]

Hi Nell1121, I hope your procedure went well and you’re feeling a bit better today. Mine was also on Tuesday, and I’m starting to feel less sore. My chemo starts next Friday, as they want a little time for the port insertion sites to heal. Have you any news about proposed dates or regime?

yes, it is like a bad dream, but things seem to be moving very quickly for you, and chemo before surgery is good, in as much as it can help reduce the size of the tumour. I had that in 1994, which resulted in a partial mastectomy. This is a good place to ask for advice or help.

wishing you kind thoughts, xx

[sharlea]

Hi Em77,

Glad to hear it went well, and would recommend paracetamol to help with any soreness. I’m sleeping a lot, but felling a lots better this morning, compared to when the local wore off. Is your chemo this Friday, tomorrow? Mine is next Friday as they wanted to allow some time for the portacath insertion sites to heal a bit. xx

[Em77]

I had the picc done this morning. They give a local aneasetic and I didn’t feel anything (the thought is definitely worse than it actually is). I then had to have an X-ray to check it was in the correct place (which it was). I’m home now and had a sleep as soon as I came in. It’s a bit sore now and may take some more paracetamol when I can. Chemo is scheduled for Friday so now self isolating. When are you scheduled for chemo? X

[sharlea]

Hope your procedure went well. Mine yesterday, still feeling sore. Was told portacath will make chemo and bloods so much easier.

[sharlea]

Am starting chemo on Friday 16th. Proposed FEC-T. Waiting for old records. If can’t have, it will be TC. Had portacath Insertion yesterday, still in pain at jugular, base of neck. Why such a tricky place, have to move neck just to eat! 

[Kisekae]

They weren't going to give me a PICC but I've requested to have one. It won't be done in time for today's first chemo but hopefully by the next one. I'd love to hear your experience of having it put in, I'm a bit nervous. 

[Nell1121]

This sounds just like me.  Port is being put in tomorrow and still don't know when chemo will start.  Was just diagnosed a week ago.  Still feels like a bad dream.  Surgery will follow after chemo and then radiation.

[Em77]

Hope it goes ok X 

[sharlea]

Hi, I’m just about to go to hospital to have my Porta-cath Insertion, not feeling that great, but .... Will let you know how it goes.

[Em77]

Has anyone had the PICC line put it yet? Mine is being done tomorrow, freaking out about it (I’m not great with needles 🤪)

[Shi]

Comfy clothes and if you are having infusion directly into hand snd not through pick or port, see if you can warm your arm up in sharps bucket first, some teams use this some don’t, also ask for a heat pad for your arm, try and preserve those veins ❤️ Don’t know how things have been during Covid but talking to others while there having treatments really helped as they were further down the line and can really help a lot ❤️ I was lucky I met mai7 on my first one back in 2017 and she took me under her wing, so if you can speak to others when you are there do please try, everyone looks after each other and helping someone else starting treatments is what everyone is only to happy to do ❤️💕💕✨✨Shi xx

[Kisekae]

It does seem really unfair that we can't bring anyone with us. 

Is anyone else having EC and then Docetaxel? 

Have you been told how long to expect the first treatment to take?

I start on Wednesday so getting quite nervous now. Any suggestions for things I should buy before then?

[Em77]

Hi everyone,

I am due to start treatment on Friday next week (9th). I have been diagnosed with triple negative her2. I’m waiting on brca results which will determine what type of surgery I will need after chemo. The treatment plan is 4 x EC every 2 weeks then changing the drug and having it weekly. After chemo I will have surgery then radiotherapy.

I’m having the picc line put in on Wednesday.

It all still seems surreal. I went for a mammogram as I was concerned about my left boob., that was fine but a shadow was picked up on my right one.

I’m planning on trying the cold cap but have been advised I will inevitably I will lose my hair.

I hate the thought that I cannot have anyone with me whilst having the chemo

[Liswa]

Hi all

I have grade 3 invasive ductal carcinoma that has spread to my lymph nodes. I'm her2+ so having chemo first starting next week followed by surgery and possibly radiation

Lisa

[maria_shields83]

I actually started towards the end of June but will be running throughout of July! 

[Kisekae]

Hi, I don't have a date yet but I've been told I'll be starting in 2ish weeks. I will be meeting my oncologist on Wednesday to discuss details. I haven't had surgery yet so this is the first step for me in terms of treatment so on that sense in eager to get started. Looking forward to building a support network here to help each other through this difficult time.

[Mai7]

Hi 

This thread is for anyone due to start chemotherapy this month.  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 and get a thermometer and check your temperature every day.

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

Here are some apps which can help to keep you on track: 

https://breastcancernow.org/information-support/support-you/becca

https://www.nhs.uk/apps-library/owise-breast-cancer/

https://www.careology.health/

I finished my chemo in October 2017 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.com/

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.

If you’re new to the forum, here’s the “Getting Started” advice:

 https://forum.breastcancernow.org/t5/How-to-get-started/bd-p/welcomegetstarted