21 weeks of chemo

[mbElizabeth]

Hi Angie
Our bodies all react to the chemo in different ways but I just tried to keep up with a well balanced diet to keep bloods good and did my best to stay healthy

I felt really tired a lot during the Epirubicin and Cyclomosiphide ( not sure on spelling) and rarely drove my car unless I felt ok . I walked my grandchildren to school 3 days a week about 2 blocks away and had to have rest upon return , on one occasion I put sneakers on and by the time I got back my big toe nail had been bleeding and the sneaker was full of blood so always wore open toe shoes after and carried bandaids and steri wipes with me

When I was changed to the Paclitaxol and Herceptin ( Trazumimab) again not sure on spelling I seemed to cope physically better and my hair started to show some stubble towards the end  which gave me some hope that the end was in sight

All up it is tough and draining on your body and mind I just tried my hardest to stay positive and pushed on for my husband ,children and grandchildren with a happy face that was covering up a lot

 Now I’m near the end of treatment which will be 12 months of treatment I’m almost back to normality and looking forward to life , travelling and a new grandchild 🥰

stay strong your son needs you 💕🌼

[angela1234]

I have also a 13 year old boy. How did you cope? I am not sure whether I can continue to do school runs after my chemo started last week 

[mbElizabeth]

Hi Em

My fingernails have only just started to give me grief in the last week or so by discolouring but the numbness has been there for about 4 weeks and I thought I had got away with just the neuropathy in them so hopefully as I finished the chemo a couple weeks ago it doesn’t go too far. My toenails are terrible they totally discoloured on a few of them and lifting .I have been going to a podiatrist monthly and he has been cutting them right back and I’ve also been soaking them in salt water and using antiseptic wipes on them daily .So far haven’t lost any I just hope this is all over sooner than later😔

So we just keep chin up and try to stay positive 💕

[Em77]

Hi @mbElizabeth my fingernails are very discoloured and have been coming away from the nail bed. I make sure to cut them as low as I can and so far I haven’t lost any (touchwood) they seem to be growing quickly so I cut them weekly. Have the tops of yours come away from the nail bed? I also suffer with peripheral neuropathyin my fingertips. I’m hoping when my nails go back to normal they might improve x 

[mbElizabeth]

Hi Justine

Ive just finished chemo a fortnight ago after 4xEC and 12 paclitaxel and herceptin Hooray!! But still have the remaining 9 months of herceptin to go

Ive found my sleep pattern is irregular too and it drives me crazy .Sometimes I get up and have a chamomile and honey tea which seems to settle me

That’s exciting about your eyelashes coming back , I can feel some stubble on my eyebrows and my hair has started growing back as well , although it’s very white, my fingers and toenails are worrying me as they are discoloured and numb hopefully it won’t last long

Cheers to getting back to normal again 💕

[justine1970]

Hi @amy46 

how are you doing?

x

[justine1970]

Morning all

How are you all doing?

I am struggling terribly with sleep…having about 4 hours broken a night.. just keep waking up and am also getting lots of hot flushes. 

On a good note my eye lashes are growing back!

x

[Em77]

Good Evening everyone

For some reason I only just saw the notifications of this thread 🤦🏻‍♀️

I was booked in for lumpectomy on 10th January but unfortunately my 13 year old tested positive for covid on the 7th so my surgery was cancelled. It should be going ahead on Monday now 🤞

How is everyone doing? 

[whyte]

@amy46 

Hi,

They gave me dexamethasone the day before chemo and got to take them for 5 days after, stop tomorrow for new cycle. Injections have given me so much bone pain. Feet were so bad last night, stopped me sleeping too.

But I have to get up and inject my diabetic dog at 6am so that’s gets me moving even when I don’t feel like it. 
Hope you are all ok.

x

[amy46]

@justine1970 

I get the melatonin from a company called werone 

I have days when I feel very tearful. It’s all a bit shit so it’s not surprising. Then I feel better for a few days and then it starts again. Hopefully as time goes on the time in between gets longer. 
@whyte  That sounds a bit scary. Are you on lots of steroids? I think my doctor gave me quite a small dose luckily x

[whyte]

Thank you for the tips, unfortunately I have a heart problem I wouldn’t be able to take that medication.  The first night I took it my heart was racing so fast it was quite scary that’s why I couldn’t sleep. Good way to start my chemo. Taking steriods all before 11.30 am but my heart pill starts wearing thin in the evening so that’s why it’s worse at night. 
Managed first injection tonight with a little help but hopefully get there. X

[justine1970]

Hi @amy46 

Thank you for that, where do you get the melatonin from? Funny enough I have just bought an eye mask! they have said the Hickman will need to stay in until after the operation, bit nervous but not too bad. Very tearful today!

x

[amy46]

Also the sleep stories on the calm app and i got some low dose zopiclone from GP for the couple of nights after chemo when steroid insomnia worst x

[amy46]

@whyte @justine1970 

I have a couple of tips for sleeping. I take melatonin and I have a great eye mask that completely blocks out light so the melatonin works better. The eye mask was new at Christmas and I can’t rate it highly enough. 
@whyte have you tried loratidine with your injections? I took it and didn’t have any problems. 
@justine1970 when can they take your Hickman line out? Hope you’re not feeling too anxious about scan and mastectomy. Xxx

[whyte]

Hi that’s good to hear. I wasn’t too bad yesterday but today day 3 of first chemo feel bad. I’m awake at 2.39 with oesophagas burning and doesn’t go. 
Start injections today not looking forward to them. I have fibromyalgia too so joint and more muscle pain I’m dreading but got to be done. 
Hopefully next two weeks will be better when steriods stop as well as they effecting my heart rate but again needed.

Hoping to start walking dog again next week.
Hope everyone doing ok xx

[justine1970]

Hi @amy46 

I am in exactly the same situation as you! I finished my chemo 11 days ago & am now waiting for my mastectomy date, I have a scan on the 26th so will see how it’s worked.

Feeling really tired and like you building up my walks, I can’t do much else as have a Hickman line in which hurts if I do too much, struggling with sleep so that doesn’t help!

 When do you start your radiotherapy?

x

[amy46]

Hi @whyte and @justine1970 

just wondering how you are doing? Im

just over 2 weeks post last chemo now. Don’t feel one hundred percent but much better than the first week. Building up my walking and was out for an hour this morning. Feel a bit in no man’s land between chemo and radiotherapy now. Hope you are both ok x

[whyte]

Hi,

i’m 51. Found out the day before my birthday.
Thanks for that I will ask questions. I’m not sure if I’m through it but they will do blood test to find out. 
I had hysterectomy in 2017 but they overies.  My doctor said I should probably be in menapause as usually 4 years after hysterectomy leaving overies you are. But symptoms hadn’t been that bad so I’m not sure. I’m sure I will find out soon and I will ask the question. Thanks R. X

[amy46]

@whyte  Can I ask how old you are? I was 46 when diagnosed and my oncologist said chemo would probably push me into menopause. She said if I was willing to be permanently menopausal I could have prostap injection to ensure this and then zometa. You could ask about that x

[whyte]

Hi Em,

I was just reading your post about the menopause injection. They have not mentioned that to me yet. Doing a blood test this week to find out if I am post menopause otherwise he said I can not have the Zometa infusions to give me the extra 2% . 
I will ask my oncologist if it comes back that I have not gone through it about it. Hate all these needles.

Thanks

[whyte]

Hi,

I had lumpectomy first. Was you brac positive?. What was their thoughts of doing mastectomy rather than lumpectomy?. I did ask for mastectomy but they said as the lump was only 12mm they would not do mastectomy unless I was brac positive which I wasn’t. 
I wish I could of worked from home but I work in a hospital and was worried about getting Covid delaying my treatment. They have now told me I’m going on half pay this month but I’m not going to worry about it just yet. Need to get through the treatment first. 
lovely to chat on here to people going through the same as you. X

[justine1970]

Hi @whyte

i was diagnosed in July and have had 15 chemos…mine is also triple negative. My mastectomy is February.

the chemo journey was to me the worst bit but turned out ok! I have worked during it as I can work at home and it’s been nowhere near as I expected.

keep in touch on your journey and ask us any questions.

x

[whyte]

Hi,

I was diagnosed 7th October with triple negative and they decided to do lumpectomy first on 17th November. Lump was 12mm. Have just seen oncologist and start first chemo on 14th January. I have two weeks of radiotherapy too but not sure when. Oncologist said it would be inbetween chemo and surgeon said it would be at end so I’m not too sure. Oncologist said it would be too long to leave it to end but I’m not sure. X

[Shi]

Don’t forget to start getting the mascara on again no matter how sparse they are it helps train your lashes to curl rather than grow out straight 💕 tip from beautiful beautician on Ysl boots counter who helped put me back together along with the beautiful Estée Lauder beautician again on a boots counter 💕 they were so kind and amazing taught me loads of tips 💕 so if the Macmillan look good feel better session isn’t for you do go to beauty counters when you can they will help 💕 also a lady with alopecia did amazing online tutorials on YouTube on how to fake brows snd lashes that was very useful 💕 ✨✨Shi xx

[Em77]

@whyte hi, I also have triple negative. I have completed chemo and am having a lumpectomy on Monday and then I will have radiotherapy. Have they given you a plan of what will be after chemo?

@amy46 how are you doing? All my eye lashes fell out but I have seen some new ones growing now 😃 also my hair is starting to grow (very fine baby hair) I have about 3 eyebrow hairs left though 😳

[whyte]

Hi,

I was diagnosed October with triple negative. Start chemo 14th very scared. My oncologist has said I will be having 6 sessions of carboplatin and taxadore. It seems short compared with what you had. Hope mine has got it right. Got 2 weeks radiotherapy with it.

Did you use cold cap?. I’m not sure what to do.

Thanks R x

[justine1970]

Hi @amy46 

well done on getting through the EC.. you are nearly there! I have my last one on 5 jan so hoping all stays on track.

Been finding EC ok so far & just been for a half hour walk.. so glad you are feeling ok with it too!

Hope you have a nice Christmas and here is to a better 2022!

x

[amy46]

Oh and annoying now my eyelashes have fallen out which means the only bit left of me with is ironically my eyebrows which I paid a small fortune to have tattooed with ombré 😂😂😂😂

[amy46]

@justine1970  Hi just checking in to see how you are? I am ok. Counting down the days until my last EC next Thursday. Less than a week to go, it seemed impossibly far away when I started chemo in august. I think I’ve tolerated the third EC slightly better. I’m resting much more now and when I go for a walk it feels odd to be so slow up any slopes that I was running up not so long ago. I’m really looking forward to getting fit and strong again. 
@Em77  how about you? How are you doing? 
anyway, I just wanted to touch base with you both and say I hope you manage to have some happy  times this Christmas and wish you a better 2022 xx 

[justine1970]

@amy46 

 that’s good you are on the mend and that you have had your op already too.

i won’t have radiotherapy as this is my second bc…had it when I was 25 too.

Struggling today as super tired from a bad sleep and keep going hot & cold!

x

[amy46]

@justine1970  I’m improving. Managed a 4km walk this morning. Still don’t feel great but I’m getting better each day. Yes they gave me antibiotics although my neutrophils were fine. I have also had a funny taste in my mouth. I find chewing gum helps but it sounds a bit different to yours. 
I had my surgery already as the her status was equivocal from my biopsy. They decided it was more sensible to remove it rather than risk another biopsy showing an unclear result. I had a wide local excision and sentinel node biopsy then a licap flap three weeks later. Will you still have to have radiotherapy ? Xx

[justine1970]

Hi @amy46 

oh no that’s awful to A&E…did they give you antibiotics?  How are you feeling now? My second one is on Wednesday & my last on 5 January so we are close to the end at the same time.

I am struggling with regurgitation at the moment and constantly feeling like something is stuck in my throat which is making me worry. Constantly have a dry mouth too.

I have decided on a single Masectomy with an implant. What are you having?

X

[amy46]

@justine1970 how are you? I had my second EC last Thursday which was ok but then I got a cold and a temperature so spent the night on a trolley in A and E 🙄 not much fun and completely wiped me out but very slowly improving again now. bit anaemic too which is not helping. Just got to accept that I have to slow down and rest now. The end is in sight though! Three weeks today is my last one. Hope you’re ok? Did you decide the surgery? Xx

[justine1970]

Hi all

 sorry for the late reply, my head is scrambled and I forgot to reply!

First EC done & I felt ok on it, more tired but ok..managed to keep working.

Had my surgery chat yesterday and need to choose whether to have a mastectomy and recon from my tummy or an implant, big decision!

 Think I can also opt for a double but need to decide.

too stressful! 

the end is in sight though!

x

[amy46]

@Em77 that’s good news re your braca test! 
@justine1970 are you ok?? 
The good news here is that I feel almost back to normal! Not run fit but long walk fit. The EC is definitely doable 😊

[Em77]

I’m on weeklys, so a final paclitaxel to have on Friday 🤞

The nice thing about EC is it isn’t weekly so have have some time feeling a bit normal.

the surgery is dependent on the size of the cancer, I’ve had the MRI so just need the results. So either a lumpectomy and then radiotherapy or mastectomy no radiotherapy. My brca test came back negative Xxx

[amy46]

@Em77  Only one more to go that must feel nice! I can’t remember if you’re doing two weekly or three? I am finally starting to feel much better after my first EC. Three to go. Reckon I can do it even if it’s horrible from now on in. Do you have any idea what surgery you’ll have? Is it surgery then radiotherapy? Lots of love x

[Em77]

Hi @amy46 I had me penultimate  chemo yesterday. Feeling a bit hung over today so going to take it easy but may try and walk the dog later if it’s not too cold.

I have a busy week ahead, Covid booster on Monday, breast clinic on Tuesday to get the results of my MRI and hopefully talk about the surgery and Wednesday oncology to discuss if last chemo session can go ahead.

Make sure you rest when you need to X

Emma x 

[amy46]

@justine1970 hey. Did you get the Hickman line? Were you able to start EC yet? I am a week down the line from first EC now. It hit me a bit harder than I expected but I’m starting to feel better now. First evening I was slightly nauseous but took something and was fine. Friday felt a bit off but did a long walk which with hindsight might not have been clever as over the weekend I felt pretty dreadful. To put it in perspective though, I’ve still got up each day, had a walk etc I just felt grotty and tired, almost a bit light headed and very weak which is a strange feeling for me. I’ve accepted I need to do less. More Netflix less racing around. I managed brunch out with a friend yesterday and lunch today then home for a doze. So, as you can see it’s definitely manageable and for us, this is the last bit so psychologically much more doable I think. You’ll be fine being on your own too as I’ve been able to make food and potter around. Have had a slightly fuzzy mouth and am starting to see why people eat a lot on chemo as my mouth only really tastes ok if I’m eating. Chewing gum helps though and I’m trying to stick to my healthy diet. My oncologist said yesterday I ‘need’ three lots of EC three weekly, top whack is four lots two weekly so room too reduce dose number or go to three weeks if I need to. Going to crack on with same next week and see how I go. Let me know how you are doing? 💕 xx
@Em77  What about you? How are you doing? Hope you are ok 💕 xx

[Em77]

Completely normal to have low days. Having a week off does have its benefits as you definitely feel more like yourself. It will also mean you’ve gained your strength back for when the chemo starts up again.

I’m now at the hungover phase from the chemo on Friday and ready to go back to bed

[justine1970]

Hi ladies

yes it’s a pain that I have to have the Hickman put in but the only way to get the chemo in.. not got a date yet though so hoping it’s not too delayed.

Having a week off chemo has given me lots of energy though!

I had a very tearful day too yesterday…felt really low..feel ok today though..it’s normal isn’t it.

[Em77]

@amy46 wow, that is a lot of walking, I can just about manage walking our dog for 20 minutes (and that’s not every day). Try and take it easy now as your body needs to recover.

The initial plan was 4xEC every 2 weeks and then carbo and paclitaxel for 12 weeks (4 cycles). I’ve started to get peripheral neuropathy (numbness in fingertips). They are not sure if the last cycle should go ahead, I have oncology on Wednesday and then a MRI on Thursday and then a discussion with breast surgeon the following week. Depending on my MRI will determine if lumpectomy or mastectomy. I have triple negative and don’t have the brca but the surgeon has said it depends on the size the tumour has shrunk to will determine the surgery. If lumpectomy I believe radiotherapy will follow but if mastectomy no radiotherapy. I struggle most with not knowing what lies ahead as I like a proper plan but I trust whatever they decide it’s just the waiting 

[amy46]

@Em77  Hickman line is different. Port sits under skin Hickman line has two (sometimes one) dangly bits that hang out just under collar bone. 
im tired too today. Had Paclitaxol on Thursday and probably overdid it a bit yesterday as I had two walks each with a different friend and I think I clicked up 30000 steps 😳😂 no wonder I’m tired, I think I forget I’m having chemo sometimes and just carry on as normal! 
How come you don’t know the plan? 
i am having the injection at my local

GP surgery given by a nurse I believe. 
It’s good to cry. It’s horrible what we are going through however well we are coping and it’s important to let the emotion out. It’s a grieving process too for the carefree lives we thought we were going to have. I do think we will come through this stringer though. I am so much more aware of how to handle my anxiety now. Not that it doesn’t overwhelm me sometimes but I am better at managing it day too day x

[Em77]

@justine1970 oh no, I’m so sorry. Is the Hickman the same as a Port?

@amy46I’m tired today, I had paclitaxel yesterday. I normal have an early appointment (between 9-10) but yesterday’s was at 2, I don’t know if that’s made a difference. It’s weird, I’m very positive about it all and not really cried till this week. I think it all got to me as I don’t know the plan going forward. Do the nurses give you the injection?

[amy46]

@justine1970  Oh no! That’s a bummer. Are you ok? Don’t be too fed up, I’m sure it won’t be long before they can get you in. Hope it wasn’t too traumatic for you yesterday xxxx

@Em77 how are you? I’ve mostly been pretty positive this last week although I did have a little cry last night: I’m anxious about my prostap injection next week just before I start EC. Trying to remind myself that lots of things I’ve worried about have not happened so I should not worry but just wait and see xx

[justine1970]

Hi @amy46 

unfortunately my EC has been postponed. My veins are too small so they tried to put in a PICC but it went wrong and they couldn’t do it.

Now waiting for a theatre date for a Hickman Line but not sure when that will be 😰

x

[Em77]

@amy46 I haven’t heard of Prosap injection. 
I have been having hot flushes since chemo and my bcn has said I am now peri menopausal.

The surgery I will be having is dependent on the size of the tumour, so either lumpectomy or mastectomy. 

[amy46]

@Em77 

Im ok thanks. Last Paclitaxol yesterday! 4EC to go. Figure I can manage that however unpleasant it is 😊 my chemo nurses said I’d I’ve tolerated the PC ok I’ll probably be ok on EC. Main thing I’m worried about is the injection prostap that im having next week to make me menopausal before I have zometa. Are either of you having this? Really anxious about being made menopausal overnight. Feel like Ive just sorted my head out abd am in a slightly better place so im worried I’ll turn babk into an emotional wreck!!

Hope your treatment goes ok this afternoon. Do you know what surgery you are having?

@justine1970  have you had your first EC? Are you ok?? Xxx

[Em77]

@justine1970 How did Wednesday go with the PICC? 
I had oncology on Wednesday. Due to my fingers being a bit numb my dose has been reduced and treatment is going ahead this afternoon. Next week they will decide if treatment should continue or if I move straight onto surgery 

@amy46 how are you doing? 

[justine1970]

Hi

Thank you…they never said I had any lymph nodes involved so assuming not!

Just waiting to get my PICC put in…Super anxious!

x