September 2021 Chemotherapy starters

[HMLL]

@veestar sorry about the headache, I had an awful headache due to the GCSF so they switched me to the weekly injection instead of the daily which helped. Tiger balm worked well for the week long headache I had and also I had some reflexology. Hope it settles x 

[Mrsmillie]

Red, flushed face and headache today, same as last week…..not too bad. Day 3/4 last week were the ‘bad’ days so I’ll see if that’s going to be the shape of things going forward, but at least I know what to expect, so forewarned is forearmed I suppose.

Glad things eased up for you today @Magenta59 enjoy your lovely walk today, always feels like an achievement when you’ve made the effort to get moving.

Always looking for tips on what’s worth watching on the various channels, I tend to spend so much time trawling through for something to watch, then give up…..Firefly Lane was a good watch, think on Netflix…..too much choice!!

Have a good weekend everybody xx

[Magenta59]

Hi @Mrsmillie 

hope your'e feeling okay today after your chemo. I think I might finally be starting to recover a little as now day 10 of the cycle. Slept a bit better and although tum is still iffy, so much better on the Buscopan! Will manage my walk today as feel somewhat more energetic!

Jane.x

[Magenta59]

Hi @louby_lou69 

Wow that is a challenge you have taken on! No way would I be able to do that in one month! You go girl! I would be doing well to manage a mile or two a day at present-and did nothing strenuous at all yesterday as felt so wiped out. Good luck with that, and I would like to support you too, if you can let me know how to sponsor you.

Jane.x

[Magenta59]

Hi @amy46 

feeling more human today so will brave the breeze and stroll down to the cliff top again-it will certainly blow away the cobwebs!  haven't seen Mare of East Town-where will I find it? Searched through the A-Z on BBC iPlayer last night and found a lot of good stuff to watch there, and I have Prime video and always plenty of stuff to choose from.

Hope everyone else is doing okay today. Has anyone had a nosebleed asa side effect? Not something that has ever bothered me but I have had a runny nose for days, and last night out of nowhere a bad nosebleed! Was a good half hour before it finally stopped. Nothing in the literature I was given mentioned this! Very odd, but I guess blood clotting is also compromised at present.

Jane.x

[Magenta59]

HI @HMLL ,

that sounds really awful for you. I was worried about this aspect of the chemo, and fortunately my veins are good and accessible so they just need to use a cannula. I hope this is not a continuous problem for you and the discomfort eases soon. Sending a big hug.

Jane.x

[veestar]

Hi

I know how you feel about the port . It was a niggling pain that lasted a few days .

Hang on in there .

I have had such a bad headache since I had my first chemo . 🥲.

inspired by the 100 miles walk well done 

veestar x

[HMLL]

Good to see everyone’s updates! I’m a week post 2nd cycle of fortnightly EC and just had my chest port fitted yesterday. Surprised by how much it’s hurting today, I’m normally pretty high threshold. Mainly where the catheter is tunnelled from the port to my collarbone. Hoping it settles quickly…?

[Mrsmillie]

Hello to everybody,

Had second chemo session today, be interesting to see if I get the red, flushed ,hot face tomorrow!

Glad to hear you managed to get your chemo today @amy46 another one ticked off!

Just pottering in the garden is a good way to get your dose of fresh air @Magenta59 battling strong wind as well makes it doubly useful ( hope it wasn’t strong wind from your dodgy tum 🤣 ). Even better to turn into a couch potato for a few hours.

I would certainly like to sponsor your walk @louby_lou69 but I’m not on FB is there another way of doing it? 

Hope everyone has a decent sleep tonight…..take care xx

[amy46]

@louby_lou69 

I want to so yes please DM me 😊

[louby_lou69]

@amy46 

My fundraiser is on Facebook so if you want my FB I can DM it to you but please don't think you have to.

Ive watched Mare of East Town and it's brilliant. Also Clickbait on Netflix is very good.

[amy46]

@Magenta59 

Nothing wrong with a day on the sofa if that’s what you need. Have you watched Mare of East Town? I really recommend it if not 😊

Hope you feel better tomorrow xx

[amy46]

@louby_lou69 

That’s awesome you are doing the walk! I was thinking about it, but I’m still finding I want to be quite private about who I talk to about this at the moment so I’ve decided to wait until I’ve finished my treatment and then do some fundraising. If you send me your link I will sponsor you. 

I had my chemo today but my white count was just on the cusp 1.5 - didn’t see that coming as I have felt pretty much ok this week. Hopefully it’ll go up not down before next week 🤞🤞

[louby_lou69]

@Magenta59 

I think the worry is not knowing how I'm going to react to the chemo, it's an unknown isn't it? 
I'm doing the Breast Cancer Now walk 100 miles in October which starts on 1st October. I'm going to go out early and try and walk 5 miles before my chemo in the afternoon. I'm hoping I can complete it as I've raised £591 so far in donations. In fact I WILL complete it. 

Lou.  X

[Magenta59]

Hi @louby_lou69 , so glad to hear you now have a treatment plan set out and a start date. You might find you can relax a bit now as it is in hand. Good luck with it, and hope you manage it all okay. I am over a week in now since my first chemo and boy am I tired! I can't raise power for a walk today, plus there is a very strong wind here to fight against, so just pottering in the garden! Tum still iffy but improved. Just got discomfort in abdomen which never really eases, and constant acid reflux. It kind of wears you down! Being a couch potato today, as I felt better yesterday! And there was I thinking things were improving. Guess it is the result of the blood count being way down. Maybe I was expecting too much of myself.

Big hugs to all, Jane.x

[Mrsmillie]

@louby_lou69  I think every step brings a mixture of emotions, you’re relieved that you now know what the next stages will be, but also anxious about how you may cope with it all. There’s always someone who’s been there before you who can offer a helpful word or two, that does count for a lot as sometimes we all feel like we are the only one going through all this. I go for my second paclitaxel tomorrow, so feel I am slowly getting into the routine of it all ( not a routine I would have chosen given the choice! ), so far so good, doable.

Sending good wishes x

[louby_lou69]

Been to meet my oncologist and I now have my plan and start date.

I'm having 3 x EC on a 21 day cycle then 9 paclitaxel weekly with Herceptin.

After that I'm having 5 sessions of radiotherapy and then 5 years of tamoxifen.

My first chemo is October 1st but think I may dip in and out of here and the October starters as you'll be the experts. 

Feel a mixture of emotions. 

[amy46]

@Mrsmillie 

Hopefully it’ll be ok, I’ve had a negative pcr and daily negative LFTs. Fingers crossed 🤞 

Hope your bloods are ok. Seems so random that some people get a dip and others not. In fact the whole thing seems random with who gets which side effects and how badly, I can’t get my head around it at all! Xx

[Mrsmillie]

Morning all,

Think I slept too well, can’t wake up!…..go for blood test later today before chemo tomorrow, the week goes by so quickly even when not doing a lot. 
@Magenta59 Glad to hear you had a better sleep last night and really hope you manage your nice walk today, no sunshine where I am at the moment, ( northwest) bit grey outside at the mo.

@amy46 🤞🏻🤞🏻🤞🏻🤞🏻all goes ahead with your chemo tomorrow, hope your daughters doing ok.

@aliess I try and convince myself that if it’s making me feel rubbish it must be doing it’s job elsewhere, have to grab the positive wherever we can.

Have a good day all, sunshine or not! xx

[aliess]

@Mrsmillie 

My chemo is weekly also had aches and pains. Just try and trust and imagine that it’s doing the job. Take it one day at a time, and try to boost your mental health. We all have so much strength. 💕

[Magenta59]

Hi @amy46 @Mrsmillie . Had a slightly better sleep and so far today no bad tummy issues, although I am still full of wind! Good job I am not going anywhere. Lol! So fingers crossed the Buscopan are working.

Hope you both had a good sleep and that your chemo goes as scheduled Amy.I guess this is a worry each cycle wondering if the blood test is favourable. How long does it take before you find out if it's okay? I get mine done again Monday 4th, then am supposed to start taking the Dexamethazone Tuesday morning, seeing Onc at Midday, then chemo Wed pm. If blood test is not showing you are recovered, do they let you know that day? It is marked as "Urgent". Just don't really want to be taking all those steroids if it can't go ahead. I have enough trouble sleeping as it is.....should have asked but you forget things at the time.

Have a good day, everyone. Sun is shining here at Aldbrough East Yorkshire, and I may have a walk down to the cliff tops and get some sea air. We are about 10 minutes walk away so I might manage it! When I went to the hospital yesterday I felt very weak and by the time I had gone up one flight of stairs I was puffing! Not like me at all. I am up and down stairs all day! Has anyone else had this happen? Only minor exertion, and felt like I'd had a full workout! Barmy! So I need to get out and try and fitten myself up a bit. Will be on my knees trying to do pony chores otherwise!

Jane.x

[veestar]

Hi Amy good to hear . Which week are you on? Thanks for the tip re numbing cream, shame the nurses didn’t mention it 😞.

I feel fine today & slept ok. Planning on going to work on Friday but I wasn’t sure how I would feel , I have a zero hours contract so I can book shifts if I can .

drinking loads of water ..

I felt very sleepy during the chemo is that how you feel?

hsve a good day everyone 🌸🌸

[amy46]

@Mrsmillie  

Glad you were starting to feel better. Hope you slept well? Xx

[amy46]

@Magenta59 I agree with @Mrsmillie 

can’t believe how much you have done given how poorly you’ve been. You just have very strong will power! Hope you had a good sleep at least.

my pcr was negative yesterday so hoping I’ll get my chemo tomorrow 🤞🤞

[amy46]

@veestar hi!

I am having the same as you! 12 weeks Paclitaxol with the Carboplatin every three weeks. I have a top tip for you - ask for some local anaesthetic cream and put it on one hour before they put the needle in your port then it doesn’t hurt at all 😊

i am finding it very manageable so far. Hope you’ll be the same. I drink 2.5l of water every dat maybe this helps? Xx

[Jill1998]

@veestar Glad you worked out how to post and finding your way round the forum . All the best with your treatment .x

[veestar]

Hello everyone

It’s great to read everyone’s posts it’s a great boost to share & offload.

I had my first chemo today . Paxil & carbo  ( I think that’s the nicknames) . Though my port . It’s not nice when they ram it in, anyone else find that ?!

I feel ok just a headache , but I think I might be getting my son’s common cold more than chemo symptoms..😳. 
I live in the south west . 

Have a good evening & keep the posts up it’s great to share 🙅‍♀️🙅‍♀️.

veestar 

[Mrsmillie]

@Magenta59.…Must say sounds like you’ve done well to do what you’ve done today when you’ve obviously not been feeling great, at the same time it does makes you feel like you have done something to contribute to family life in general no matter how small it seems……I’ve had a better day today, I slept well last night and all symptoms have eased as day has progressed so I’m hoping maybe this is the way it will pan out going forward, then at least I will have some idea of what to expect….but, could all be completely different after next session….who knows? Only time will tell. I really hope you manage a decent sleep tonight, it makes a huge difference when you’re not lying awake willing sleep to come……fingers crossed 😴

Onwards and upwards to all and big hugs all round xx

[Magenta59]

Hi @amy46 @Mrsmillie , Amy, it's rough your daughter being in isolation with covid. That is bad enough in itself, but the fact that you are so vulnerable is sostressful for you. I do hope you stay safe, and as well as you can be on this regime!

MrsMillie, I hope you are having a better day today-it does get to you at times. I had a bad day yesterday with abdominal pain and trips to the loo, two big episodes, when I got up and again after tea. The pain was dreadful and I felt like I was going to pass out! Then again first thing this morning-I ended up chasing my partner out of the bathroom twice as I needed to be in there fast! So took loperamide and rang the oncology ward for some advice. I ended up with an appointment with the acute oncology nurse who has givem me Buscopan for the bowel spasm, and some Diflam mouthwash as my throat and mouth feel raw, wven though there is no sign of anything untoward. I will start the Buscopan tonight and hopefully I might have a better day tomorrow. So,so tired as I am now in the "vulnerable" phase, and the chemo belly drains you even more! I was hoping to be back home this week but have to accept I am just not strong enough yet and need a bit more time with Chris recuperating. My wig fitting will have to wait! And picking up my new specs! Nothing that is desperately needed right now. Did have time to pop in at home and organise supplies for the kids, and check my elderly cat is on the mend after a major dental surgery 2 weeks back. Bless him, he has a better appetite than me, and Ibet his mouth is just as sore!

Here's hoping for better days ahead this week for all of us. I knew it would be tough but it still blindsides you all the same! Take care and stay safe, sending you a big hug. Jane.x

[Jill1998]

@veestar 

Just click on reply to the last post on the thread to comment - there’s no specific button to comment generally .x

[Lu_B]

Hi, I might try loratadine if feeling poorly. 

Had my third EC chemo plus Zoledronic acid today. Hopefully will not feel too poorly in the next few days. Had a lovely friend to take me to hospital ( better then Hubbie fitting me in around his meetings). Still trying not to take sick leave at work, but will do if necessary. 

Someone mentioned IBS symptoms earlier, and I had it last time( second week?). So, will avoid triggers like beans, lentils, spicy foods this time.

for the sore mouth I use a mouth wash with bicarbonate...

Love to you all,x

[Mrsmillie]

Good Morning all.

@amy46 I don’t do any injections at home, but it might be done intravenously, I will ask when I go on Thursday. xx

[amy46]

@Mrsmillie Morning 😊It’s not ignorance - there are so many new things here to get your head around. It’s the injection to keep your white count up - I have three daily injections after my chemo but it might be different for you? X

[Mrsmillie]

@amy46 Sorry to hear your day hasn’t been so good, just what we need COVID to be thrown into the mix, horrible for you to have to isolate from your daughter….. you hear so many stories of one person in household testing positive but then no one else gets it, so, fingers crossed you will be ok, but I know what you mean when you say you would like to get it so it’s done and dusted, it’s like one thing less to worry about!!

Pardon my ignorance but is the filgrastim given intravenously at the same time as chemo?

Sending good wishes and hugs x

[amy46]

@Mrsmillie  Just had a thought, could it be the filgrastim injections making you feel poorly? Have you tried loratidine antihistamine? Xx

[amy46]

@Magenta59  And @Mrsmillie 

Sounds like you are both having a torrid time. I’m so sorry. I think you are doing brilliantly though and hopefully tomorrow will be a better day for you. I’ve had a very tearful day today. Physically not as chipper as I usually am and emotionally all over the shop. Hate having my daughter isolating in her bedroom from me and super anxious about whether I’ll now test positive. Trying to reframe it - maybe if I get it now it’ll be a good thing, get it done and dusted and then I can stop worrying about it! 

Wish I could say more to help. Thinking of you xxx

[Magenta59]

Hi @Mrsmillie , that is hard, having to do it every week! As you say there isn't much time to get your head round it, and also there is no time to really recover! I take my hat off to you! You are doing really well, considering what you have to deal with! It makes mine look comparatively easy! Keep your chin up-we are all here for each other when there is no-one else around-I was on here at about 2am once when I couldn't sleep. Just getting it down in a post actually helped. It's in the middle of a sleepless night it seems overwhelming. Just sharing the problem eases the burden.

Jane.xx

[Mrsmillie]

@Magenta59 I’m so grateful for your comforting words, I just get myself into a panic because I continually look to the next appointment and convince myself that I can’t do it, think because it’s on a weekly basis I don’t feel I have time to get myself together….. got to try and pull myself together…..it does help to know you are not the only person going through this s**t, it can seem like a very lonely place even when you have a loving family for support.

Big hugs xx

[Magenta59]

Aww @Mrsmillie , I can totally sympathise with you. And you don't sound pathetic, it really IS horrid. This is how i felt last night but once I was over the bowel issue this morning, it has improved. Do not feel at all well and feel extremely weak and waffy. It isn't a breeze! Ithink the sore mouth is the worst thing just at present so I am sucking a Boots mouth ulcer pastille-anything to relieve this will be welcome. Its fiendishly sore and I fear my dental problem (a deep gum pocket ) is being affected as it really hurts now! Hoping it will pass for us in a day or two, and we start to pick ourselves up again. We will just be feeling relatively normal when they hit us with the next cycle! I worry about it getting a bit worse each time due to the cumulative effect, but no way of knowing until we get there.

I am keeping a diary and noting all my side effects, so that I know what to expect next time and when it may strike! You are defo not failing! It is a hard challenge we have to rise to, and it will effect us all in slightly different ways I believe. At least I have not had the nausea and sickness apart from Friday morning which was day 3. THAT I was dreading, and it didn't happen. Hoping it stays that way! We just need to ake it a day at a time-each day has been somewhat different to the last! Just take it easy and rest when you are able-sleeping can be problematic but take some painkillers and get as comfy as you can. a good rest does help.

A big hug and best wishes, and hoping everyone else is coping too. Jane.x

[Mrsmillie]

Thanks Jane,

Had really horrible night, everything aching, horrible throat, hips feel painful, shivery…..took some paracetamol and managed to get some sleep, but it continues now……really don’t know whether I can do this, I know it sounds pathetic, but I thought I would be able to cope and now I’m turning into a quivering wreck! Everyone else sounds like they are dealing with these things, I do know everyone has wobbles and it’s not easy, but I feel I’m failing at the first session!

Hope today is kinder to all xx

[Magenta59]

Hi @Mrsmillie 

sorry you are feeling poorly today-I started feeling off colour at  around the same point-I think once the steroids end, it all seems to kick off. This is my 4th day of feeling ropy. My digestive system is in a state of turmoil! The griping burning pain is making me feel really bad, but once I have been to the loo it eases. Also got a lot of joint pain to add to the general malaise! And a sore throat and mouth and awful bitter taste. It may be worth ringing our teams as we could be suffering oral thrush as @Shi mentioned. If there is something to alleviate it I am all for it! Take care and hope it doesn't get any worse. Jane.x

[veestar]

Hi, this is such a blonde question but how do I post a comment on this thread?! I can only see how to reply to a post.. such a silly question !

Veestarx

[Mrsmillie]

Think I spoke too soon….today, has not been so good, very achey top of legs, stomach iffy, horrible taste back of throat, generally ‘off’…..it is day 3 after first paclitaxel session, not looking for any miracle advice, just feeling bit down and needed a bit of a moan about it!!

Hope tomorrow is a better day for us all xx

[Shi]

If you do end up with thrush mouth try for fluconzole that your team will give rather than the drops ❤️ Glad you are feeling bit better today ❤️ Step by step you are all doing fabulous even if you don’t think you are 👭❤️💕💕✨✨Shi xx

[Magenta59]

Hi @Shi , I feel so much better today. Had a bit of a gripy tum all day yesterday, just a bit like IBS which I am used to, and the loperamide I took in the morning sorted me out! All okay in that dept.today! I have a lot of wind though and am burping all the time! I do tend to get this with heartburn but it is much worse than usual-I am glad I am not in company! Just having my usual meds for this and it seems to be working. It's settling down since I had lunch! My mouth isn't quite as sore today, although not normal by any means. I will keep on with salt water rinses (YUK) as it seems to be helping. If itgets bad, i will contact my team, who said they could prescribe Diflam? Or something of that ilk. If anything crops up that is bad, I will be ringing! They would be cross with me if I didn't!

Many thanks, Jane.x

[Magenta59]

Yes @aliess much better today-yesterday seems to have been a one off. eating okay again and keeping well hydrated. It the prickly skin and the nerve pain from my surgery that is the worst thing to deal with today, and achy joints to some degree. But nt unbearable, just annoying!

Take care and keep safe. Jane.x

[Magenta59]

Hi @amy46 

I am on Docetaxel and Phesgo Injection (Herceptin/Perjeta) in my thigh every 3 weeks. Don't feel sick today, but I have really bad heartburn/reflux, despite taking my normal meds. So much wind coming up it's not true! Could burp for Britain! What has nw kicked in is very itchy skin, even though I am moisturising every bedtime. It's like a prickling sensation, all around my neck, down my arms middle of back and behind knees and thighs. It prevents you getting to sleep as just wriggling around like mad. Also the nerve pain from my surgery and ANC seems to be heightened at present-it must be a knock on effect. Mouthstill sore but not as bad as yesterday. So bearable, but uncomfortable!

What a pain re Covid! You could see this situation coming weeks ago. Not wearing masks is just crazy! Despite vaccinations, we cn still catch it and spread it to others, without maybe being desperately ill with it. It makes the likes of us so more vulnerable and prevents us doing anything rekatively normal as a result. We have to protect ourselves as best we can, as others in the general populace don't give a damn! We would be shielding for months in a normal situation, but with Covid it becomes very dangerous for us. Sorry about you having to miss your friend's 50th-just a little outing like this would have raised the spirits. It feels like lockdown again to me at times.

Have tried CBD but it didn't help me-I think I wuld have needed to neck the whole bottle! Lol!

Take care and hope you don't come down with Covid-we are doing tests quite regularly. I will have to get all my kids to est before I come home from my oartner's house next week. I feel I will be ready to take up the reins again in a day or two and get back to my pony and some R&R!

Jane.x

[aliess]

@Magenta59  Hope you’re feeling better today! 
💕

[aliess]

@amy46 So sorry to hear this. It is an extra worry you could just do without! It’s rare on this journey to have something to look forward to, sorry you’ve had to miss out on your friends birthday celebration. Sending love and hopefully you won’t come down with anything 💕

[Shi]

Magenta please ring your team to check with them over phone about abdominal pain ❤️ Being on chemo is not like usual, please check everything out with your rapid response teams, burning wee, thrush mouth, thrush down below (chemo can bring on thrush mouth snd down below) ❤️ Your teams won’t mind they need you to be vigilant so they can get you safely through ❤️ Steroids have you bouncing off the walls at all hours, you grab your sleep when you can, go with the flow and be kind to yourselves, drink 2-3 l water a day help flush things through ❤️ It does mean you pee more through the night though. Keep safe everyone ❤️💕💕✨✨Shi xx