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August 2021 Chemo Starters

217 REPLIES 217
Mel1978
Member

Re: August 2021 Chemo Starters

Thankyou, uv made me feel better about it.  I know everyones different and I suppose the more we have maybe the worse it will be, but its good to know u were OK, think my consultant just wanted to scare me haha.

He also prescribed me antidepressants but im reluctant to take them as I'm sure this is normal to feel up and down - its not like we have a cold is it?  

Xx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @Mel1978 

I feel l like that too, especially living alone you have more time to think.

Today I have asked about counselling so will let you know what they suggest.

x

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

I will keep you updated of what it’s like! All being well with no delays my last one is 21 December.

well that will be a good celebration to have! Maybe slightly less romantic but a good one still!

x

justine1970
Member

Re: August 2021 Chemo Starters

Hi @Mel1978 

I am on Cycle 4 of 3 weekly carbo/paclitax and feel pretty much ok! Still working full time from home and I live alone, I even drive to the paclitaxel ones!  This week is my carbo week and I have had full on days since…I have it on a Tuesday and find that Saturday and Sunday I just need to rest…I get aches from the injections and tingly feet but that’s it really.

i think you will be fine! Thank you for the reassurance of the EC.

x

Mel1978
Member

Re: August 2021 Chemo Starters

Aw well fingers crossed im lucky and find it OK like u have.

Its so good to know there's others feeling the same isnt it?

I'm trying to stay positive but its so hard sometimes.  My emotions get the better of me, then I feel guilty that im worrying my friends and family.

Roll on Christmas when, hopefully, most of us should be finished, or nearly finished.

Xx

amy46
Member

Re: August 2021 Chemo Starters

@justine1970  my first one is 18th nov so I’ll be about a week behind you. Does tgg he at mean you finish before Christmas? That would be nice!! 
if I don’t miss any I should finish 30th December my 15th wedding anniversary. Of all the things I thought I’d be doing on this anniversary this was not one of them 😂

amy46
Member

Re: August 2021 Chemo Starters

@Mel1978  I have found it fine too be honest. It’s definitely a bit harder than the weeks when I just have Paclitaxol but I haven’t been unable to look after myself at any point. I was pretty fit beforehand and have kept up with walking and been running short distances. Occasionally felt a bit fluey but that’s really it. Everyone is different but I reckon you’ll be fine with this if you were ok with EC.

 

I am meant to have EC two weeks apart. Hoping it’ll be ok xx

Mel1978
Member

Re: August 2021 Chemo Starters

Hey.

I have just finished 3 3weekly EC, the 1st 2 were fine, abit tired but nothing too bad.  The 3rd was harder but doable - I had about 3 days where I had no energy and literally just laid around but thats it.

I'm due to start 3 weekly carbo, with weekly pacliotaxil at the same time - my oncologist told me im going to find it hard, and kept saying I shouldn't be alone, but I live alone, so now I'm really scared because iv been ok with EC.  How did u find carbo? 

Thanks 

Mel x

 

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

I am just 51 so haven’t started the menopause yet either but nothing has been mentioned about the injections. I get dreadful night sweats now though so maybe that’s it!

I have thought about getting a cleaner but am so paranoid about catching Covid, turning in to a hermit! 

Every 3 weeks I get carbo with the Paclitaxel and finding it really quite easy so also dreading EC…what date is your first EC? Mine is 9 Nov.

x

amy46
Member

Re: August 2021 Chemo Starters

@justine1970  I think you are the first person I have seen having same way round as me. I was told as I’m 46 that it was likely the chemo woukd push me into menopause but that if I want the zometa I’d need this injection to make sure I’m menopausal. I’ll try to find out what it’s called. You are doing well to stay working full time but I definitely think you should find someone else to clean the house!!!!

I am slightly dreading the EC as I’ve found the Paclitaxol so doable, how about you? Xxx

amy46
Member

Re: August 2021 Chemo Starters

@ali 3.141592 I’m not too sure what it is. I was just told if I want the zometa I have to be made definitely menopausal as it’s benefit is only in that group and maybe even be detrimental to pre menopausal women. Good to hear it hasn’t bothered you too much. I’ve got no idea if I’m starting to be menopausal from the chemo yet. No flushes or night sweats so maybe not??!!

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

sounds like you had my emotions at the weekend! I felt exactly the same!

i have had paclitaxol first and EC at the end.. more have had 10 so far so 5 left to go.

what is the menopausal injection? I thought that chemo automatically put us through it?

 As for exercise I do work full time & clean my house but that’s about it and the odd walk. It’s about all I can manage without getting breathless!

i have been asked to be referred for counselling.

 This is a long haul isn’t it.

x

 

 

ali 3.141592
Member

Re: August 2021 Chemo Starters

@amy46 another sure which injection you are considering for the overnight menopause but I’ve had goserelin/zoladex throughout my chemo treatment. I’m in my late thirties and was more terrified of the menopause than the chemo to start with but it hasn’t been that bad.

 

Though it kicks in quickly I found the side effects built up over time so 3 ish injections later I feel I’m at a steady state. Initially it was occasional night sweats and disruption to sleep.  Nowadays I find it normal to wake up overly warm a few times per night. Not much in the way of daily hot flushes but I wear layers so I can quickly cool down if I need to. The brain fog is barely noticeable on top of the chemo fog 😅. To be honest I the worst bit is actually getting it jabbed in each time.

 

 

amy46
Member

Re: August 2021 Chemo Starters

@justine1970 

I can’t remember if you are having EC and Paclitaxol and which way round? How are you doing? I had a bad time over the weekend mentally but I have picked up again now. I seem to have a pattern where every few weeks I go down the blank hole of despair. My mind goes to horrible places and I get obsessed with the idea that I will get a recurrence, I’m tearful and fed up but then after a few days it goes again. I can’t tell if it’s chemo or the start of menopause or just the shitty fact of having BC?!!  
I am meant to be getting zometa the bisphosponate but I have to agree to an injection to make me menopausal. I don’t know when to get this as the thought of being pushed into menopause  overnight is not appealing. Anytime else  been offered this? 
how are you other ladies doing? Where are people up to with Chemo and how are you coping? Anyone else been trying to exercise?  Sending love and support and wishing you all some sunshine and happy things for today. Xxx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

I have Cycle 4-7 left and haven’t been told about the radiotherapy etc yet.

x

justine1970
Member

Re: August 2021 Chemo Starters

Hi @MargoB 

I drive each week to the Paclitaxel sessions and have found it to be ok for me.

X

mbElizabeth
Member

Re: August 2021 Chemo Starters

Hi 

I’m having EC at the moment and told not to drive myself for these sessions Im going onto Paclitaxel next month and Dr said to get someone to drive the first time to see how I go with it but hopefully be ok 

Good luck with yours 💕

 

MargoB
Member

Re: August 2021 Chemo Starters

Hi 

I'm at a similar stage to you, had 3 EC and had the sickness - just have to keep going with the anti-sickness tablets. Ive lost about 80% of my hair and been doing the cold capping. 

Just about to move onto 9 Paclitaxel.... does anyone know if it's ok to drive yourself to and from Paclitaxel treatment ? ... I was told No for EC but hoping it will be ok on Paclitaxel 

Hope you are all doing ok

Many thanks 

Margo 

SlightlyBewildered
Member

Re: August 2021 Chemo Starters

Hi Everyone

All fine here. I have my final round tomorrow. I then have my CT scan in prep for the radio on the 19th Oct. radiologist said treatment would prob be around 2 weeks after that. Im having two weeks worth. One week whole boob. One week target area. I didn’t realise you need a scan first. It’s so they can see exactly how your organs sit inside you so they know where to position the machine apparently! 

Sending love to you all. Hope everyone is doing ok. 

Sarah xx 

bananasatsuma
Member

Re: August 2021 Chemo Starters

@amy46 

Re radiotherapy, I was told daily for three weeks but that different oncologists have different views about how best to structure the dosage. Apparently doing it this way is good because I will get an intense dose of radiation where the lump was located as well as some to the whole breast but I don’t quite understand why that has to take three weeks. I have an appointment with the oncologist in December where I expect to learn more. 

amy46
Member

Re: August 2021 Chemo Starters

@Sephie 

Good to hear you are doing ok. Well

done for keeping working too. The Paclitaxol has been fine so far and if you’re only having four I think you will hardly notice it! I’m on for round seven today so getting the Carboplatin too. Haven’t been terribly hit by that either so far although I definitely feel a bit grottier after the double whammy. Do all you ladies know already how much radiotherapy you will have? I haven’t been told yet xx

Sephie
Member

Re: August 2021 Chemo Starters

Hi @amy46, how are you getting on?

 I’ve had three sessions of EC so far, one more to go then four of paclitaxel to look forward to.  My oncologist said most women find paclitaxel more tolerable so fingers crossed.  I had awful sickness and nausea after my first EC but that was mostly resolved by the addition of new anti-sickness meds, then tweaked again after my second cycle.  So the nausea is largely resolved now (partly by constant nibbling!) but I am feeling pretty tired.  I’ve managed to work from home the majority of days each cycle though.

I am still sticking with the cold cap although my hair is thinning a lot.  At my last session another lady was advised to stop using it as she was pretty much bald on top - I’m hoping I can hold out a bit longer because the nurse told me that some women (not all) start to get regrowth between paclitaxel sessions.  

How is everyone else doing?  I hope you’re all getting lots of care from the medics in dealing with any side effects.  And plenty of support from friends and family.  It would be good to hear how everyone is.  Best wishes to all xx

amy46
Member

Re: August 2021 Chemo Starters

Is everyone ok? It’s been really quiet on here for a while xx

bananasatsuma
Member

Re: August 2021 Chemo Starters

@amy46  I’ve found that I just have a glass of water on the go constantly and that a sip of water makes me feel better immediately if I’m feeling ropey. Apart from that I have a pint of water as soon as I wake up and around four or five pints throughout the day. Measured in pints because that’s the size of the glass!  Plus herbal tea, normal tea, occasional coffee and juice. I pee constantly but at least there’s no danger of being dehydrated! You will find your own balance though. 

amy46
Member

Re: August 2021 Chemo Starters

@bananasatsuma 

Really good tips thank you. I didn’t eat much meat before but I have gone pretty much veggie now and eat a lot of plant based food to ensure I get enough fruit and vegetables. I can’t give up cheese though! 
I am already drinking 2.5l water plus whatever else I have tea/coffee etc will I need even more than this?? It sometimes feels like a full time job drinking so much and the accompanying trips to the loo! 

bananasatsuma
Member

Re: August 2021 Chemo Starters

@amy46  Well, my job is a managerial and strategic job that I can easily do from home, so I think that makes things a lot easier for me! It also helps that I started in lockdown, so it was easy to show that I can get everything done without being in the office. 

I’ve been vegan for about 7 or 8 years. It’s been one of the best decisions I’ve ever made. I do miss cheese though. Vegan cheese is, for the most part, awful. 

Thanks for the reassurance about paclitaxel. I’m a bit concerned about neuropathy but I don’t think I want to go to the hassle of icing my hands and feet during treatment as some people do. It seems like a lot of equipment to lug about and I can’t stand having cold hands and feet.

 I think people say that EC is one of the harsher regimes but it really depends on the person. I’ve had no peripheral neuropathy and no serious or long lasting nausea. In terms of being prepared I’d have something to help you sleep, something for constipation and be prepared to drink more water than you ever thought humanly possible! 

justine1970
Member

Re: August 2021 Chemo Starters

@amy46 

I do find that I can’t multi task like I used to and I am only happy in doing the things I know..I wouldn’t be happy to have to learn new things as I can’t focus enough to learn.

Work is my therapy in a lot of ways as it takes my mind off this and keeps me from going in to my own head and crumbling.

x

amy46
Member

Re: August 2021 Chemo Starters

@justine1970 

You are amazing too for keeping working full time. Is your memory and concentration ok? The other day i was searching my brain for a word for about 5 minutes! I’m doing some maths every day to help my son but also to keep my brain active! Xx

amy46
Member

Re: August 2021 Chemo Starters

@bananasatsuma 

thank you, that is so encouraging to hear, both about the counts coming up and that you’ve found EC tolerable. I am finding the Paclitaxol and Carboplatin much less horrible than I expected but I did have the impression that maybe I’d find EC harder. I’m going to keep positive. Maybe I’ll be ok on the EC too 🤞

I am so impressed with you ladies that are also working through chemo. I have been off since diagnosis, I really couldn’t do my job at anything less than one hundred percent as I’m a paediatric anaesthetist. No way I’d want anyone in my position anaesthetising my kids so I wouldn’t put anyone else’s child in my hands right now. Im nervous about the neuropathy I might get because I think it’ll make it hard for me to do my job. Just have to wait and see I guess. 

Were you vegan before your diagnosis? 

I think you will find the Paclitaxol fine. I don’t even have any premed or anything to take home apart from my injections now.

xx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @bananasatsuma 

This is really good to hear you coped so well on EC.  I too am working still full time in a very busy role from home but it’s not an intense one and I am managing fine so far.

Oh dear to your nosebleeds! I hope they won’t be too bad for you!

x

 

bananasatsuma
Member

Re: August 2021 Chemo Starters

Hi @justine1970 

I’ve found EC surprisingly tolerable and have managed to maintain almost full time work in a relatively senior role throughout. See my post further down thread for more detail. Obviously everyone is different and I wouldn’t want 12 more cycles of EC, but I’ve been far from wiped out and have only had one day where I couldn’t get out of bed - that was mainly due to having a bad cold and lack of sleep than the chemo. 
I have a childhood history of nosebleeds ( including disturbing my dad once when he was watching The Exorcist by sleepwalking and being unaware that I was covered in blood and had left bloody handprints all down the stairs! 😂) So I am expecting nosebleeds. So far on EC I’ve had dry sinuses but no actual nosebleeds. 

justine1970
Member

Re: August 2021 Chemo Starters

Hi @bananasatsuma 

thats so good to hear and reassuring, thank you so much. 

I am trying to eat more iron too..mainly spinach and I do love lentils.

how did you find EC? I am finding the paclitaxel ok so far, I have had 6 and no real side effects although my nose bleeds and today I had a very small nose bleed, it scared me though and I panicked.

does anybody reading this have nose bleeds? 

X

bananasatsuma
Member

Re: August 2021 Chemo Starters

@amy46   And @justine1970 
I had my last cycle of EC today, woohoo!  Just the 12 paclitaxel to go….

Seeing that you’re both experiencing low white cell count or low haemoglobin I thought I’d mention that I noticed today that both counts for me had improved massively over the past two weeks - both pretty much doubled. I don’t feel different and I didn’t do anything different but if you’re worried it might help to know that it can change really quickly. 
That said, I’m vegan, so always conscious about iron and b12 and have kept taking both throughout as well as trying to keep iron rich foods in my diet. As well as the usual green leafy suspects, dried fruit (particularly apricots), lentils and pulses are good sources of iron. I also take my iron tablet with orange juice as apparently the vitamin c can help absorption. Just in case you’re getting bored of spinach and kale! 

amy46
Member

Re: August 2021 Chemo Starters

@justine1970 

Yes really strange. And I thought it would make me feel different but I feel the same. Weird. 🤷‍♀️ How is the bone pain? Xx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

oh that’s weird isn’t it after mine being the same! So glad you got to have yours too…mine was 1.1 so just slid in too!

just did my first of 3 injections this week…hoping the bone pain isn’t so bad this week…it makes me comfort eat! 

x

amy46
Member

Re: August 2021 Chemo Starters

@justine1970 

Hopefully it’ll stabilise there then 🤞

I was surprised to find my white count on the cusp today 1.5 so only just got my Paclitaxol. Apparently not uncommon after the Carboplatin last week but was a bit of a surprise. I thought it would be Covid stopping my treatment this week! This cancer malarkey is full of unwanted little surprises 🙄

Sephie
Member

Re: August 2021 Chemo Starters

Hi @purpleworld 

I have a PICC line, it’s fine.  No pain when it went in, no discomfort now it’s there, and makes chemo infusion really easy.  Certainly I found it easier than the cannula - like you, sometimes the docs/nurses had trouble finding a cooperative vein for the cannula, and I always seemed to get a bruised hand from knocking it while it was in place.  The hospital gave me a prescription for a waterproof sleeve to cover the PICC when in the shower, which is only mildly inconvenient.

I bought some cotton PICC sleeve covers really cheaply from Anna Bandana, they have loads of colours and patterns in different sizes and they are way more comfortable than the cover the hospital provided, plus they don’t look “medical”! 

ali 3.141592
Member

Re: August 2021 Chemo Starters

That sounds like chemo flush. I tend to get it days 2-4 of each cycle. Not sure if it is related to the steroids or the chemo itself. Just looks like you’ve caught the sun and can feel rather warm to the touch. I think my treatment team weren’t at all bothered unless it turns into a rash, itch’s or starts to hurt, but mention it to them if you feel at all worried.

Congratulations on getting through all you EC cycles!

Sarahb2
Member

Re: August 2021 Chemo Starters

Hi there, I initially resented my picc, as it can be quite limiting in the shower and during exercise, but it certainly makes life so much easier for taking bloods and giving the chemo! You need to have it flushed through and dressed at least every 10 days, but if you’re changing to weekly treatment you shouldn’t need extra appointments.  I was anxious about the picc line insertion but it was was fine! 

Sarah x

purpleworld
Member

Re: August 2021 Chemo Starters

Hi all

Had my last cycle of EC on Tuesday - I’ve got a 3 week break and then I start Pacli every week for 9/12 sessions. My nurse suggested I consider a PIC line - has anyone else got one? What is it like to wear? It took 3 attempts to insert the cannula and they can only use the left side due to mastectomy! 

Also I’ve woken up this morning with my face and neck looking a little flushed - could it be a side effect of the steroid?

Take care everyone x

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

Its 113 which is ok but it was because it was apparently a huge drop.

They have said that food won’t help but I am trying it anyway, spinach tonight and yes I eat red meat so will try that too! 

x

amy46
Member

Re: August 2021 Chemo Starters

@justine1970  It all seems so random doesn’t it?! How low was your Haemoglobin? Spinach?? Lots of or a nice steak if you eat meat?? Xx 

justine1970
Member

Re: August 2021 Chemo Starters

Hi @amy46 

 yes I have 3 injections a week so hope that will pick it up.

as for the hemoglobin it’s hard to pick it up yourself isn’t it, feeling very tired and more breathless.

x

amy46
Member

Re: August 2021 Chemo Starters

@justine1970  

Oh no? Do you have the injections to keep your levels up? Hope you are ok? You probably feel a bit rubbish if your haemoglobin has dropped ☹️ Sending hugs x 

justine1970
Member

Re: August 2021 Chemo Starters

Hi

Today my bloods have taken a big dive, they did the chemo but need monitoring and I hope they go back up.

Has anybody else had this? My hemoglobin has dropped a lot.

x

Sephie
Member

Re: August 2021 Chemo Starters

Hi @MargoB 

I too have had two sessions of EC.  In week 2 after the first session I did develop calf pain but it was manageable with paracetamol and disappeared after a few days.  I also do a lot of walking - not sure if this helped.   Now waiting to see if the leg pain returns this cycle.  

Like you I have cold capped.  A lot of hair has fallen out and the thinning is really obvious to me, but no-one more than a few feet away is likely to notice (yet).  I have a wig but haven’t worn it out yet.  Hardly anyone knows I am having treatment but they’ll certainly notice the new hair cut, even though it’s not super radical, so I kind of feel that once I start wearing it there’s no going back.  It’s a big step!

Good luck with the legs and the hair! xxx

justine1970
Member

Re: August 2021 Chemo Starters

Hi @MargoB 

I get calf pain and find that walking helps. I also take paracetamol.

Have you tried putting heat on it? 

Also maybe try putting your feet in a bowl of Epsom Salts.

x

MargoB
Member

Re: August 2021 Chemo Starters

Hi

So thankful for the group ... Ive been dreading losing my hair and have only had 2 EC with clld cap but most of my hair has fell out ... still can't brave the shave yet thou    I found doing the look good feel better make up and skin was really good and made me feel better... it was also lovely to speak and see other women going through the same thing 

I also have a wig but haven't worn it  I feel self conscious that people will know but I just need to wear it snd sure it will be fine 

Anyone had side effects of calf pain and what did you do yo help it 

Love and hugs 

Margo

mbElizabeth
Member

Re: August 2021 Chemo Starters

Hi

had my second last week but I’m fortnightly at moment and did mine off week maybe check with doc but mine said have it as it’s important for us

justine1970
Member

Re: August 2021 Chemo Starters

Hi

Has anyone been advised if they can have a Covid booster if on weekly chemo? 

x