April 2019 Chemo Starters 💖

[Susanmanchester]

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@Cora wrote:

Hiya I have HER-2 positive ductal grade 2 ... only just getting up to speed with all the jargon so not sure that answers your question. Oncologist says the weekly dose means they can give less strong content so you don’t have the highs and lows of more spread out treatment... will see on that... Berlin is a wonderful city... 

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I have one more FEC then nine weekly Paclitaxel not looking forward to that but at least no injections after . July 5 last chemo currently living off digestives tinned soup and yogurt after steroid crash 

[Cora]

Hiya I have HER-2 positive ductal grade 2 ... only just getting up to speed with all the jargon so not sure that answers your question. Oncologist says the weekly dose means they can give less strong content so you don’t have the highs and lows of more spread out treatment... will see on that... Berlin is a wonderful city... 

[Shi]

Interesting times 😘😘how are you? Hope you rang your unit to check with them ❤️❤️ You units would always rather you ring about anything, they will be pleased you are keeping close eye on yourself, it helps them help you on the chemo journey 💕💕✨✨Shi xx

[Hannahlizzy21]

12 weekly doses wow?! 

I didn’t have an introductory visit to my unit, just thrown straight in 😂 but then again, I also didn’t have a PICC line.

Can I ask what type of breast cancer you have?

And I also feel the same about the summer holiday thing! I’m going to still try and go on my mini break in May to Berlin, but I’m coming prepared with my surgical masks for the flights!

[Cora]

Hello all

i have a introductory visit to chemo unit on Monday - Happy Easter! - wondering what to expect at this session? Will they fit the picc line then? And does anyone know if I’ll have to buy a cover for the picc line - if so any suggestions on where to find one? I have to have 12 weekly doses of taxol alongside Herceptin so it’s going to be a strange summer...don’t know how others feel but I’ve been pretty positive all the way so far but was floored when I went into a store this week and saw all the holiday stuff and it hit me that we won’t be going anywhere this year... self pitying I know and I’m ok now ... back to being positive 😀 x

[Aneeebel]

Hi Debi2

You're definitely not a wuss! Its horrid! 🎀💖 Your body is being battered! (I was in hospital 5 times and the HOT clinic at least 3, maybe 4 times...😫)

There's so much info to take in...I actually said to my hubby that it was a couple of months before it started dawning on me exactly what the oncologist/doctors meant...I got to the point where I would ask them to repeat the info or you would spend days wondering what the heck they meant!

My first 6 Herceptins were done as infusions with chemo... the 3 injections I've had so far have been fine! No side effects! The chemo nurse comes to my house to do them...the drug is delivered to my house too! 💖💪🏼

Keep your chin up... 🎀 x

[Debi2]

Hi Aneeebel

Thanks for the info.  I am going to check what they said when i go for my marker fitted on Wed.  There is so much to take in all at once i have probably got mixed up.  How are the Herceptin injections? are there any sickness or side effects? i think i will be starting the herceptin with my 4th cycle which is when i start Doxetal (not sure spelling right).  Everyone on the forums are strong ladies, sometimes i feel i am being a bit of a wuss when i am tired all the time.💖

[Littlenoddy]

Hi llangal 

Thank you for your lovely post 

It really made me laugh. (too much too soon bit) 

And a laugh is a great to have

Scatch on

[Mai7]

I’m from the May 2017 starters and for anyone still looking for coping tips of any sort here’s my blog: http://lifeafterlola.com/

the Chemo thread on it has lots of suggestions which we all shared and we all got through it and have an annual meet-up now.  I hope you’ll do the same. Best wishes. 

Nikki. X

[Susanmanchester]

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@Kelly73 wrote:

7 hours ago

Re: April 2019 Chemo Starters 💖

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

Hiya

I was told a district nurse could come out, if I was unable to do it, but opted to give it a go myself. The thought of it was much worse than actually doing it x

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You are braver than me then ! X 

[Susanmanchester]

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

Hiya

I was told a district nurse could come out, if I was unable to do it, but opted to give it a go myself. The thought of it was much worse than actually doing it x

[Susie B]

Hi interesting times

Just popped in from the Feb group. Have you taken any paracetamol for your headache. So long as you take your temp, and it's normal 1st, then you're ok to take some. You just need to take your temp as paracetamol can reduce it. Hope this helps. Good luck xx  

[Kelly73]

7 hours ago

Re: April 2019 Chemo Starters 💖

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

Hiya

I was told a district nurse could come out, if I was unable to do it, but opted to give it a go myself. The thought of it was much worse than actually doing it x

[Kelly73]

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

Hiya

I was told a district nurse could come out, if I was unable to do it, but opted to give it a go myself. The thought of it was much worse than actually doing it x

[Aneeebel]

Hi Debi2

I'm from the October 18 thread... hope you don't mind me commenting 🎀

I'm on Herceptin injections - you have 18 in total on a 3 weekly cycle...if you had Herceptin included in your chemo regime then these are counted towards the 18! 

I had Herceptin with 6 cycles of chemo so only need 12 injections

I will be taking Letrozole tablets for 10 years as I'm post menopausal 

Hope your treatment is going well...

Good luck to all you Ladies x 💕🎀🌸

[Debi2]

Sharon , ring them. They are there to advise and reassure.  You won't sound like a pathetic wimp so don't ever think that!  If you are unsure about anything be it treatment or side effects its always best to phone in.  Don't sit at home and worry as that won't do you any good either. 

[interestingtimes]

hi Ladies,

I need some input. I have had a headache for two days now. Yesterday was quite strong. This morning it was mild but it's building again. I don't have a temp but don't feel great (day 7 of cycle1). Do I need to call the hotline?... Am kinda freaked out by the possibility of neutropenia but also don't want to sound like a pathetic wimp! 
Thanks for the input in advance!

Sharon

[Hannahlizzy21]

I’ve had a sore throat since chemo/ herceptin and perjeta.

Has anyone else had this? It’s annoying and painful!!

[Susanmanchester]

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@Hannahlizzy21 wrote:

ALSO! Cold capping ladies- I also thought I would mention that I am 10 days post chemo, and I have had minimal hair loss after cold capping. I have washed my hair maybe 3 times since chemo day, with baby shampoo, Luke warm water and Aussie Stop The Break leave in conditioner, and as I say... minimal hair loss. I hope this continues! X

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Day 23 and still hardly any hair loss switching from FEC to Paclitaxel soon so hopeful ... only washing hair once a week and water spraying cold in between using cold option on dryer .. 

[Susanmanchester]

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

[Susanmanchester]

I just had my second FEC and not been physically sick just the odd queasy feeling just took a tablet and sorted it . One more then on to Paclitaxel which I believe less toxic ? 

[Mandyr44]

Morning everyone,

I am on day four of my first chemo treatment, although it hasn’t been as bad as I was expecting I have suffered with nausea, lack of energy and severe constipation. Today I have noticed a swelling between my neck and shoulder, I haven’t heard anything about this before, has anyone else experienced something similar? I am self injecting to increase my white blood cells and was told my bones would ache as the bone marrow would be more active so I don’t know if it is something to do with that.

any advice would be appreciated.

Mandy xx

[Josarah]

I’m having chemo before my surgery and im seeing my surgeon on Wednesday. I’ve had 2 rounds of EC so far and with so many to go before my mastectomy I too am worried that the cancer could just be growing if the chemo isn’t working. I’m hoping I’ll get a scan or something on Wednesday to check it is shrinking. I’m finding chemo quite rough. I feel awful for 2 of the 3 weeks and having the Easter hols this past 2 weeks has been tough. Hopefully the herceptin, pertuz and docetax won’t be too bad. But at least we can all get through this one day at a time and soon enough we’ll be out the other side.  I’m trying to think of this a bit like a pregnancy. I feel awful but every day I’m closer to the end. I don’t get the joy of a baby at the end but I’ll be well and stronger for the rest of my life. 😍

[ZoeTwinMum]

Thank you all for your kind replies. I'm feeling well but then I suppose it might all change on Thursday. The closer it gets the more anxious I am.

I have a 8.15am appointment so they shouldn't be running too late.

Hugs to you all xx

[Hannahlizzy21]

I felt rubbish the first week tbh. I feel good now though thank god. I hope that this is how my next 5 cycles will go. Rubbish one week and then fine for 2.

Yeah just double check, as it should only be for 1 year. X

[Debi2]

Hi 

I will check about the Herceptin next time i go. The Breastcare nurse told me on the phone so i could have heard her wrong - I thought it was a long time! I think the same as you about it shrinking but i am sure they have us on the breast treatmet plan for us, but it is a worry.  What day are you on now, did you feel not yourself the first few days? 

[Hannahlizzy21]

Herceptin injections for 10 years? It should only be for 12 months. You may need to double check that hun, as on NHS website it also says for 1 year. 

I’m having a bit of a strange one today- I keep thinking ‘what if the chemo doesn’t shrink the tumour?’ (As I am yet to have my op, which will be after my chemo). I just hope that it does.

It’s such a scary time. It really is.

[Debi2]

Day 4 for me today, feeling ok although still a bit lightheaded.  Not ventured out far just into the garden, quite cold out there despite the sun. My HER2 results came back yesterday - unfortunately they are positive (which i did expect because they were borderline) this means i will start Herceptin and Perjeta along with Dox... on the 4th chemo cycle.  Then after surgery and radiotherapy - which i knew about - it will be Herceptin injections for 10 years.

[BluebellTime]

Lovely sunny morning here. Day 5 for me and feeling pretty good, back to walking the dog etc. No sign of hair loss but probably got that to come, I'm keeping everything trimmed!! I've had 3 surgeries and rads since 2014, my last one was for a recurrence in the nodes from 2014. I've been very lucky there is no sign of spread but this time its chemo, to hopefully have a good mop up of any lurking beasties. Keep plugging away everyone, crossing off the days now and we'll get there!  xx

[Llangal]

Am on day 11 of TC and the hair is definitely starting to go! Feels a little weird not sure at what point to just brave the shave as the moulting is gonna get out of hand I reckon. Ive been laughing wondering if the same thing happens with pubes and whether I should tidy them up similarly, or it might look like a tarantula had landed! (Too much? Too soon?) 

I had a crazy bonkers itchy head on about day 5-6, so that must have been the hair follicles protesting. My kids said I made them  feel itchy I was scratching so much!  looking forward however to no grooming requirements (e.g legs and armpits) - silver linings and all that.  

Otherwise similar effects to others. My vein had complained and come up quite sore, have been icing it and a bit of hydrocortisone. 

I have had on and off a sore mouth and throat, found the best thing is salty water with a bit of bicarb in it, better than all the mouthwashes they have given me. Just rinse with it often. 

Good luck people, we’re surviving! 

[Llangal]

I wasn't too nauseous tbh and the couple if times I felt a bit queasy I just popped one of the antisickness meds they gave me, seemed to work. But have heard the sickness is worse on the fec regimes. How you doing? X 

[BluebellTime]

Very wise to raise it with the doctors, I probably did not stress it enough. The one that seems to be helping me most is Metroclopramide, but we're all different of course.It only lasted about 24 hours for me and I've felt better really quickly xx

[ZoeTwinMum]

Thank you for your reply. I too get sick easily. I was extremely sick during pregnancy having to take three different anti sickness to survive. I've already mentioned it to the doctors so hoping I can have the works as i still need to function as a mum first and foremost. 

Xx

[BluebellTime]

Hi Zoe,

I've just started FEC T after surgery and not cold capping, I get migraines too! I might get a wig but also stocked up with bandanas etc. I'm on day 4 now and have to say I was very sick on day 2 and overnight, but my hospital have been great and have sorted out loads of extra anti sickness meds and I'm fine today. I get sick easily (just a feeble tum I think!) and its clear lots of people don't, but if you do - help is there. I'm sorry you are going through this at such a young age (I'm 64). Your girls sound lovely. Good luck Mo xx  

[NikNak5]

Hi Sharon

ive not had the nausea but I have felt like my body was shaky & i put it down to the horrible steroids. It’s funny you should mention a prickly scalp, I woke up this morning & my hair near my crown hurts. I was told at chemo on Monday that I wouldn’t have any hair by next Monday but at present none has fell out but as your post says perhaps it’s now about to start. I’m collecting my wig tomorrow but seem to already have a collection of scarves/bandannas etc but I’ve no idea how to tie them so they look funky! My mouth is also getting worse, the taste is really weird but on the whole I’m doing ok. Stay strong everyone, we are gonna kick ass on cancer 💕

[ZoeTwinMum]

Hi all. 

New to this forum so thought I would drop in to say Hi.

Is anyone starting FEC-T.

I'm 38 and a mum of 7 year old twins girlies. I've had my surgery and my first of three rounds of FEC is on 18th April then followed by three round of T then to Radiotherepy. 

Feeling ok about it, which people seem to think is rather strange. Had my long hair cut off to shoulder length in preparation as I've decided not to cold cap as I suffed migraines and im not keen on having a cold head. Fully prepared for the hair loss.  Although the oncologist say that my hair might not fall out on the FEC, I have a colleague who lost hers on the first treatment. At least were coming into the summer months not the winter. 

My gorgeous girls are my rocks. They are fully aware of what is happening to Mummy and they will be the ones to shave my head when the time comes. 

We are all amazing going through this blip in our lives and it's a fight we must never give into. 

Zoe xx

[NikNak5]

Hi Christine18

when I have double dose chemo I have emend antisickness one hour before my Chemo and for 2 mornings after, also Ondansetron 8mg anti sickness which I took one tablet at 8pm the same night of Chemo & 8am & 8pm the next day. I also had steroids dexamethasone which I had to take 2 tablets twice a day for 3 days starting after chemo, I also came home with metoclopramide anti sickness tabs to take as & when needed but I’ve not taken any of them, I’ve only had one time when I felt sick but this passed. Remember to drink lots of fluids to flush everything out of your system. When we just have the Paclitaxel you don’t get the anti sickness tab to take beforehand & you don’t come home with any meds. But it’s not made me feel sick at all. I have found ginger nut biscuits do help & eat small amounts & often. I’ve been In at work today for 5 hours. Trying to hi in when I can. You sound quite positive Christine & sickness should pass after 3 days. Fingers crossed for your next Chemo. Good luck to everyone else reading 👍🏻

[Lindylou54]

Hi everyone

My infection has cleared and have got new date of 18th April for my first chemo, have had bra and prosthesis fitting this week, my fitter is trying to find me some more feminine bra’s, just because I have had a mastectomy doesn’t mean I don’t want ‘nice’ looking bra’s rather than what my grandma used to wear. Don’t get me started on the underwear to match. Has anyone else decided not to wear a wig, I am just going for lots of hats and scarves.

Hope everyone is feeling good today

[interestingtimes]

Hi Christine (and everyone else),

I can relate on the nausea! Day 3 and 4 were the worst; today's day 5 and not great but better than I was! So glad to hear from people further along that it gets better! 
Has anyone felt shaky? Not sure that it's steroids related as I had it again today. Trying not to eat more since my appetite is up the pole with nausea!

My scalp is starting to feel prickly, which I am told is the precursor to hair loss.

Thankfully, my taste hasn't changed at all so I guess in the grand scheme of things, I am getting off lightly!

Good luck ladies and be strong. We got this!

Sharon xxx

[Christine18]

Hi NikNak5

I’ve really suffered from nausea the last two days. I just constantly feel sick. I just have to think of food and it makes me feel bleurgh. I’ve not been sick just feeling it. I’ve got domperidone but that’s it, what have you been given? I think I need to ask for something else as it doesn’t seem to be working. 

Otherwise, I’ve been pretty lucky I think. I’ve been tired but managing to get out and do some long walks. It’s just this sickness feeling, if I didn’t have that I’d be ok, it’s stopping me in my tracks from doing more. 

I’m glad the weekly Paclitaxel has been ok, does it make you feel sick at all?

The only other side effect I have had is hip pain, I’m hoping it’s from the injection and my bone marrow responding to it! 

Good luck for your next chemo session! And good luck to everyone else out there

Christine 💕

[Debi2]

Hi Ladies

My mouth tastes really tinny, i am still lightheaded with the steriods although last one today so hopefully this will stop over weekend.  Appetite a little sluggish, but again i don't know if i am feeling sorry for myself and making it worse.  Hope everyone is coping with the side-effects i am sure they pass.  I keep popping onto the Feb starters and they are all doing great which is really inspiring for me.  

Take Care💖

[NikNak5]

Hi Hannahlizzy21

i too find it hard to tolerate the steroids! I’m so glad I dont have them each time I have my chemo. They made me spaced out, dizzy, faint, blurred vision. I met with my doctor today & we are going to see if things ease or whether I need to take a lower dose as they knocked me for six. How’s everyones mouths? My taste is yucky x

[NikNak5]

Hi Christine18

sorry for late reply. Hope your first chemo went ok & hope you didn’t suffer any nausea/sickness? It’s. It’s nice to know someone else is on the same regime as me. Looking back the first week hit me harder than just the single dose of Paclitaxel, so if you do feel really tired you won’t feel as tired in weeks 2 & 3. I had long brown hair down to my bra strap but got it cut to a bob just before my chemo started. I’m 11 days in & still have all my hair, haven’t used a cold cap but don’t wash my hair as much, hairdryer on really low & no straighteners. I’m collecting my wig on Saturday & I’ve also ordered a couple of headscarves/hats from hipheadwear.  I’m 46, you are so young but we will fight this horrible thing & we will get through it. Our journeys are just beginning but the support/advice on here is great. You will have good days & I hope these all fall on the days of your weddings you need to attend, you will look gorgeous I’m sure. I don’t know if you are but I’m writing a daily journal of how I’m feeling each day, that way I can look back on previous weeks if I’m having a rough day. Good Luck Christine18 😊

[Kelly73]

Hiya Debi

I had never self injected before and to be honest, didn’t think I could as I hate needles, but they are so thin, it went it really easily and with no pain. I just pinch some tummy fat and jab it in quick. I sat there the first time just hovering over my skin, but my sister was there encouraging me. I counted down from 5 and did it. I was so proud of myself !

I was meant to have a PICC line put in, but bottled out last minute. The thought of it was probably worse than what it will be. I am now considering going to get it done before my next chemo. At least it will only be once as opposed to each time I go.

good luck with your treatment.

Ive felt great the last 2 days, pretty much normal, but just easily tired if I do too much. Im listening to my body and resting when I need to x

[Hannahlizzy21]

ALSO! Cold capping ladies- I also thought I would mention that I am 10 days post chemo, and I have had minimal hair loss after cold capping. I have washed my hair maybe 3 times since chemo day, with baby shampoo, Luke warm water and Aussie Stop The Break leave in conditioner, and as I say... minimal hair loss. I hope this continues! X

[Hannahlizzy21]

The steroids were bloody awful for me!!

Was glad to see the back of them for the first cycle.

Yes, this was my first chemo round, and I’m on day 10, and I really do feel great.

The District nurses won’t think you are wasting their time though. That’s their job. They are here to help people in need- and unfortunately at the minute, that’s all of us on here! (But it won’t be forever) x

[Debi2]

Hi Hannahlizzy21

Unfortunatley my OH doesn't do needles and neither does my son!, they are both quite squeamish.  Lovely to here you are feeling ok on day 10, is this after your first chemo session?  I hope you have a great time in Wales. Just had some porridge and my steriod tablet and now to jump in the shower.  Everything seems to be slow motion today.  

[Hannahlizzy21]

Self injecting isn’t that bad once you get past the first needle.

Either that, or do you have a family member who could maybe do it for you? My OH was going to do it for me, but in the end I was just like ‘bam’ I’m gonna be brave and do it 😂- to his shock! 

I’m on day 10 now, and I feel really good after chemo. I’m going to see my sister in Wales for Easter weekend, before it all starts all over again on bank holiday Monday. 

Oh well, when it’s in our system, although it makes us feel lousy, as least we know the little buggers are being killed! X

[Debi2]

Hi Kelly73 and Sue

My treatment is also the same as yours, i am now on day 3.  Straight after chemo i felt fine but then later in day felt very sick and lethargic. Day 2 only a little nausea and tiredness so just sat in garden for some fresh air, today i feel ok but just not my whole self!  I think the steriods are making me a little light aheaded too, hopefully this will go once i have finished them. 

Do you take your temperature every day? 

Kelly had you ever self injected before? I don't know wheter i can do it, i have been changed on to injections from tablets for my blood thinners - from previous DVT - and i have to have the district nurse out to do it for me. I would much rather do it myself so i don't take up their time but can't get over the barrier of sticking it in😳

Sue, try not to worry - i know its easier said then done, i even had a cry when i was ther before they started! The nurses are lovely and are always there.  My sideffects are like a bad hangover without the headache just the sicky feeling and tiredness.  Just come on here to talk, all the ladies are going through the same thing and they are so lovely.

We will get through this. 

Take care ladies

Debi💖

[Kelly73]

Ps... the steroids made me feel completely spaced out, but was only on them for 3 days x

[Kelly73]

Hiya Sue

sorry to hear you are on this journey too, but we are all here to help each other 

Actually having the chemo was no problem at all. I was sick later that day, then spent the next few days just feeling nauseas on and off. My energy levels were very low too, as was my mood and I spent most of my time either in bed or on the sofa. Think I was just getting frustrated with not being able to do anything. I’m on day 8 now and had a great day today, out and about pretty much all day. I had 1 spell of dizziness, but it went after I ate. I managed to get out also, the last 2 days, just for a bit of fresh air, but was then wiped out. I’ve also had to self inject since day 3, which is boosting my white blood cells. I really didn’t fancy this at all, but it’s been fine. Just hoping the next 2 weeks are good, before I do it all again.

Hope all goes well for you

Kelly x

[Runningsue42]

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@Kelly73 wrote:

Hiya All

I start my chemo on 3/4. Having 3 sessions of EC then 3 sessions of Docataxel, followed by 3 weeks of Radiotherapy.

goid luck to everyone having treatment x

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@Kelly73 wrote:

Hiya All

I start my chemo on 3/4. Having 3 sessions of EC then 3 sessions of Docataxel, followed by 3 weeks of Radiotherapy.

goid luck to everyone having treatment x

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Hi kelly73

I start my chemo on 16th april and im having the same as u - EC for 3 sessions then docataxel then radiotherapy.  Can i ask how are u coping so far? What side effects have u had?

Sue xx