Starting chemo October 14

[anx56]

Hello ladies day 10 and still not sleeping great and still waking with the headache!  Was quite scared today had the most excruiciating back pain apparently a side effect of the Granocyte last injection yesterday so hopefully all will settle down now.

Linzz feeling for you  its so tough but I do know lots of ladies whos bloods do pick up rather than not so I really hope your well enough for your 2nd cycle, its enough what we have to go through and its so hard to plan anything too.and understand what you mean about the delays and cycles being messed up, crossing everything for you.  Let us know how you get on Xx

Have a peaceful and restful Sunday everyone gentle hugs to you all XxI

[nicnac15]

Hi junash im normally every 28 days so yesterday was totally unexpected and annoying seen as the last was 2 weeks ago just another thing to add to. I too was expecting then to fade out but like you dont really want the menopause either xx

[LainieG]

Linzz I'm laughing at the image of you with your mohican and your makeup. I think it's important to inject a bit of fun into shaving your hair. It's an upsetting time. I had the same problem as you with my bloods. On Wednesday they were low and there was the possibility of a delay but by Friday they were fine so try not to worry too much.
Hope everyone has a peaceful, se free Sunday xxx

[Linzz]

Morning ladies. Well, last night I decided that although I could have got away with my hair being OK-ish for a day or two more it was coming out in handfuls, so my OH shaved it off for me. As promised we made it into a spectacular Mohican, and I put a load of Girl with Dragon Tattoo makeup on and took a few pics. He then took it down to a #3, and (after colouring for years) I can see that not as much as I thought is grey/white! I wonder what it’ll be like when it grows back.

Re periods, mine is due but I’ve spent the last two weeks feeling like it could come and it hasn’t… yet. I was kind of hoping that since that’ll all be over soon with the tamoxifen etc, that I’d never have another. Not that I’m looking forward to being menopausal, just wanting to put something else behind me so I can stop wondering “what happens now?” like I seem to be about everything these days.

I’m meant to get my second FEC on Monday but my bloods on Friday showed my neuts are too low. I’ve got to go in as planned and they will re-do the bloods and then decide whether to go ahead. One nurse said 9 times out of 10 these Friday-bloods for Monday-chemo are ok when re-done BUT another said she couldn’t see it improving enough so would probably be delayed. Got a bit upset, as my schedule was working out so well that I was going to be able to get to a wedding I’ve been focussing on as a coping mechanism (not to mention xmas would have been ok too). Not all that is thrown into doubt. Not to mention the efficacy of the whole treatment course being diminished by delays (even though they say it doesn’t matter I believe it probably does if it happens more than once and with 5 more to go who knows what else might happen). No sign of those immune-boosting injections being routinely on offer here either – though I will now be enquiring about them!

[Junash]

Morning all

Nicnac i didn't have a period last month but oh the joys it's shown up this morning. Im usually every 26 days - for some reason thought i wouldn't be seeing a period during chemo.

This does explain why I've been stuffing every sort of carb for the last few days!

Xx

[nicnac15]

Evening all
robynv had my first chemo on 20th oct with the cold cap and not noticed anything with hair yet either.
Can anyone tell me have you noticed anything different with menstrual cycle mines just gone irregular im normally like clock work to the day but 2 weeks later and its starting again.
I too had the 5 daily injections to boost white blood cells and bone marrow got my husband to do these for me.
Sue definately keep a diary it helps so much i picked up on day 7/8. Xxx

[bettypoppit]

Well it is a mixed bag but then perhaps it is because our bc and treatments are too!?
Hi murphy1963, thanks fir thinking of me 🙂 mmmmm still unsure if I'm going down the UTI route but concerned that i am, and soooooo not in the mood to 'cry wolf' 😞 hoping I'm not going to get caught out!!!
Nighty nighty lovely ladies and here's hoping to a restful Sunday xxxx

[Dianexx1962]

I live in north wales and have daily injections day three after chemo for 7 days x hope all is well I've had a vile two days just coming round now thought I had a urine infection but all clear thank god x
Have a good weekend folks x x

[Junash]

Strange isn't it the difference:

I'm in Kent and get 1 injection the day after but its slow release booster so instead of 5 injections - no SE with it thankfully !!!

[Murphy1963]

Hi bettypoppit, I live in scotland, forth valley health board, and don't get the immune boosting injections or tabs. By all accounts I'm not missing out!!

How is your uti Betty??

[bettypoppit]

Mmmm I'm quite taken aback by the apparent difference in treatment we are getting. I'm in north staffordshire under UHNS and I'm getting 5 daily immunity/white blood cell boosting injections, day 2 to 6. The DN did say today it was a recent introduction tho. Maybe others are getting it in pill form?

[sue456]

Take it from me Murphy u r not missing out. i wouldn't wish this feeling on my worst enemy. i was told today that im having these injections to try to build up my emuine system because in the past I've suffered with infections and im illurject to most antibiotics. so they would struggle to find something to fight it off with. sorry can't spell. lol. sue xxx

[LainieG]

I'm a teacher too Robynv and the oncologist told me I couldn't work because of the risk of bugs. I took sick leave and won't be back until at least February. I've struggled with the second treatment. Def worse than the first. I've been really light headed and felt I could faint a few times. More nausea this time too. Hoping it's just this time and that it doesn't get worse with each session xxx

[Robynv]

On day nine I was in bad shape! I went in to see if I had the flu or something mad I was dehydrated! I had been drinking water but couldn't eat much! Anyway they gave me two bags of fluid and a big shot of nausea meds! By the time I left I was a different person! The nurse told me to schedule the fluids and the shot for day four next time and I won't have to go through all that misery again! I am definitely going to tell my dr. I want to do that!

[Robynv]

I get one on the day after!

[Robynv]

I started on October 20 and haven't noticed any hair loss really. Still undecided about what to do about it. Hopefully I will know when the time comes! My hair is pretty long so going to be noticeable when it happens.i am on a 3 week cycle for 4 treatments then 2 weeks off and seven weeks of radiation. Just joining y'all and liking the read. I have 3 grown children and one beautiful 8 month old grand daughter. I am a teacher but took a leave of absence to do this. Glad I did bc don't think I could have been much good in the classroom with all this going on plus the germs and I know I made a good decision. Hate this for all of us but this blog helps! Wondering if the second treatment is as bad as the first? Worse? Same? Hair thing is freaking me out! Trying not to think of it! Have two wigs already and a couple of hats but I am not going to handle the bald thing well I am afraid!

[Robynv]

When was your first treatment? Mine was 20 and haven't noticed much so far.

[LainieG]

I don't get them either Murphy. It must be a regional thing. It's funny how treatments can differ across the country. Xx

[Murphy1963]

I'm feeling left out, I don't get these injections everyone is talking about. What are they? X

[bettypoppit]

Hi Sue456, totally with you and Murphy on this fatigue...feeling better in myself (day 6 /#2) but today (last of 5 injections this morning) soooo tired. But, doing a diary and remember that slowly picked up during week 2 so just going with the flo 🙂
I also was VERY ratty (snapping at my Lurcher Girl AND husband) yesterday which isn't like me....well to be frank not with LG lolol and very stressed about hygiene. ..why do men (terrible generalisation i apologise) just NOT UNDERSTAND grrrrrrrr. So, Sue456. ..what I'm trying to say is, this is soooo tough on us - physically and mentally - BUT we do seem to bounce back 🙂 🙂 Hold on in there as we CAN do this.:)
Big《《 hugs 》》xxxxxx

[LainieG]

Sue I know what you're feeling. I'm on day 9 fec2 and just starting to feel better now. The first week is horrible but you will feel better soon and be back to normal by week 3. Plan lots of nice days for when you feel better and it makes the first week easier to bear. Just think 1 down. You're on your way. Hope you feel better soon Sue. Sending hugs 💖💖

[sue456]

thanks for reply Murphy just got told from DN side affects from daily injections r fatigue that explains a lot. dosent help much because i still have another 3 days of them. suexxx

[Murphy1963]

Hi sue, I can totally sympathise with you. I normally pick up about day 9. It's horrible I know but we can do this. I have said after my last 2 that I'm not doing it again but I will, I get my 3rd next week. I've kept a diary just with how I'm feeling on each day, and there is definitely a pattern, and this has helped me to know that things do get better, and give me a day to look forward to. Maybe this would help you too.

I know exactly how you and feeling, we'll get there!!!

Big hugs xxxx

[sue456]

day 6 feel awfull no energy at all just about managed a wash. when do u pick up again don't no how much more of this i can take. really getting me down. sue xxx

[Murphy1963]

Hi bettypoppit, I thought during my first cycle I had a uti and phoned the helpline and they told me to go into hospital and get it checked. Luckily I didn't have but still had the symptoms of needing to go and a heavy feeling down below.

This cycle I also have the same feeling, starting at exactly the same time ie the week before I'm due to have my chemo. Seemingly there is something in the c part of the fec that irritates your bladder, so I
I was told. If I were you though I would still phone the helpline and ask as a uti is one of the infections they ask you to report.

Hopefully it won't be anything.

Love xxxx

[bettypoppit]

Help....possible UTI on the way....what to do???

[LainieG]

AMDriver I bubbled too when my hair went. I has my friend shave it and we both had a cry then a giggle as we polished off two bottle of prosecco lol. Like Junash I felt better after it was shaved and I'm used to my stubble now too. Xx

[bettypoppit]

Junash, thankfully bubbling brook has abated;) lolol

[Junash]

AM Driver - feel for you as I was exactly the same - i was surprised at my reaction - sobbing in the shower and as obv i knew it was going to happen but still awful - much better after shaving - despite my grey stubble making me look like a Mitchell Brother 🙂

Betty hope your bubbling has calmed down.

Have a good day ladies hope everyone feeling well xx

[bettypoppit]

Morning Ladies, hoping we wiĺl all have a good weekend 🙂
re injections...all of you self injecting. .BIG respect. ...I'm clearly lucky and have a DN daily visit...i just know i couldn't do it myself...although hubster seemed quite keen to have a go! 😉 lololol

Have s good one 🙂 xxxxxx

[AMDriver]

Bettypoppit - thank you - it was truly horrible - i think I lost half of what I had left in one go.... 😞 Virtual hugs all gratefully accepted. x

Anx56 - I did my first injection of GCSF today under the eye of the DN, someone is coming again tomorrow to make sure I've got it right. It was nowhere near as bad as I thought it would be, but I had to take a really deep breath and only managed to do it at the third attempt. I'm sure I will do it at the first go tomorrow as it was really not too bad.

Hopefully we will all have a good weekend. xx

[anx56]

Wow busy busy busy!!! Good evening ladies I'm stuggling to keep up only been away a day so good though to hear you thoughts and stories.

I'm now day eight and seem to have the munchies have had some weird cravings bit like being pregnant... no don;t get excited its impossible lol!

Jingox thank you for the welcome, Im looking forward to getting to know you all and welcome the support. Glad to hear your 2nd cycle slightly better hope it stays that way.  Have you tried changing the times of your meds.  I had a couple of bad nights but adjusted the times so I began taking them ealier in the morning and finishing earlier in the afternoon (as advised by my BCN) seemed to do the trick still wake early but manage to get 5 or 6 hours straight.

Hey Linzz  I love your idea of the Mohican I have said once mine has gone I will have a picture done with my son and hubby who are both folically challenged

Bettypoppit good to know headaches are normal part of the process seem to ease off now once Im up and about.  Had my hair cut very short just before 1st session.  Scalp has been quite itchy though.  Been shampooing and conditioning but its weird to think about it going not sure how I will feel apart from the above comment and the photo to look back on when the day comes that we are all post treatment.

Robynv my first was the 24th Oct and is on a 21 day cycle 

Sue456 the flushing is a normal side effect I look like I have had a week in Florida! Temperature has to be over 37.5 or 38 before its considered high need to check with chemo nurse to see what your upper limit is mine is 38 although you should have been told a lower level as well.  Do you have a number to call if you are concerned about anything?

Ladies the stats thing!  My onco put the wrong figures in a painted a very poor picture I queried it against my path report and she re-entered with a much better outcome, I now worry that the chemo meds have been mis- calculated trying not to worry about it but can't help being concerned.

Quick question anyone administering their own injections of Granocyte?

Love and hugs to you all Xx

[bettypoppit]

Hi AMDriver, thanks for the info re nails. I'm truely sorry to hear of your upset in the shower...it's really really hard, but you are being sooo brave coming to terms with all of this. Big big hugs xxxxx

[Robynv]

Yup! All I am goin to say about that! Lol

[AMDriver]

Hi everyone, heard from my sister-in-law about the nail thing. she says that it doesn;t matter what the colour of the nail polish is, it's just there to protect the nail - so don;t get a quick drying polish as that will dry the nail out even more, and to use non-acteone based remover as acetone ones also dry out the nail. She says that discolouration will start to go after chemo stops and it is very rare for someone to actually lose a nail.

I spent 15 minutes sobbing in the corner of my shower today as handfuls of hair came out when I washed it,  found it really upsetting. I think I can just about get away with what i have left at the moment but for how long?

[bettypoppit]

Hi LainieG. ..I'm a little woisie but not as bad as cycle1...from what I've read up it MIGHT be your red bc count is low (read something on Macmillan site this morning as my white bc was very low after jyst the first chemo!) If in ANY doubt, id ring your chemo helpline number....put you mind at rest and they should be able to advise you further. Xx

On my bubbling brook syndrome, I'm now beginning to think I'm being over zealous in the cleaning department when having a shower, as nobody else appears to be inflicted with this particular problem! lololol

Sorry, but going into ranty mode....head tender, armpits clear, BUT, my legs are aweful...usually use an epilator - which is obviously out of the question....but can we use depilatory creams...the spiky leg hairs are now irritating the hell out of me...grrrrrrr ?????

[LainieG]

Just wondering if anyone has been feeling really light headed. I can't seem to shift this horrible feeling. Had my 2nd fec last Friday and still feeling dizzy, especially when I get up from lying down or sitting. It is better than it was but just isn't going away. I'm not sure whether this is normal or something I should flag up. Xx

[Murphy1963]

Nicnac, happy birthday to your wee boy. It's great to do normal stuff and forget all this rubbish for a bit xxxxx

[Murphy1963]

Bettypoppit, hehe so funny, loved the build up too, wondered what you were gonna come out with 🙂 sorry though, I can't join you with that side effect, at the moment anyway but who knows what'll happen tomorrow!!!!

Fell asleep on the couch so wide awake now. Hope everyone gets a good sleep xxxx

[bettypoppit]

Lolol glad you got a giggle Junash....but now desperate for some company with this particular se 😉 lololol xxx

[nicnac15]

Evening all wow lots to catch up on had a lovely day celebrating my sons 7th birthday and felt quite normal. To the ladies that started chemo on 20th just wandering re the hair loss did u use the cold cap i did and havent noticed anything yet. only day 10 after first fec everytime i wash it i expect the worse. I am on 3 weekly fec got 5 more lots to go. Xxx

[Junash]

No Betty but you've really made me laugh with your new party trick - mcmillan nurses didn't mention that side effect - hahahaha

Must buy her book, great reviews xx

[bettypoppit]

Wow, what a great read through I've just had...bonus babies and all 🙂

I'm shedding stubble like there is no tomorrow. ..yak!

I have just got to ask this, somewhat delicate question - as it has me mystified and giggling like an adolescent. ..but - and be warned this is rather personal and a bit vulgar - is anyone else blowing bubbles down below - and i do mean from the lady garden gate 😉 no offence intended lovely ladies. ...but please, i really don't want to be the only one with this se affliction! Lololol ?????

I've tonight started to read the Linda Bellingham book - I am finding it witty, interesting and poignant. ..anyone else reading this? I'm struggling to put it down.
Big hugs xxx

[Junash]

Murphy also just read about your 20 year age gap - wowzers thats amazing xx

[Junash]

Murphy - LGFB session - was told to come along make up free as they will be applying. really looking forward to it 🙂

[LainieG]

I'm loving hearing about these bonus babies. You're so lucky. A wee surprise like that must have been lovely. Xxx

[jingo_x]

Murphy1963...and there was me thinking an 11 year age gap was hard to beat!  Gotta love bonus babies - he is spurring me on through all of this!  

[LainieG]

Murphy I didn't take makeup with me to the LGFB session. They provide you with your own bag full of skincare and makeup. It's a lovely gift with good brand cosmetics. The cosmetic companies must donate the products and they have bags for fair, medium or dark skin. Enjoy xxx

[Murphy1963]

Wow, been busy on here today. Good to see everyone seems to be ok. Welcome to the new ladies, hope you get lots of comfort from joining us, it's a lovely group.

Nails - I didn't think fec affected nails, I thought it was only the taxol part that played havoc with nails. I'd heard about painting them dark so might just do that now just in case.

Hair - I'm due to have my 3rd fec on wed and I did cut short my hair but haven't shaved it. Lainie thanks for the tips re moisturising, my scalp does feel a bit dry, but I've still got a fair bit of stubble. Do you think we will defo loose our eye brows? I dread that more than I did losing my hair. I've coloured my hair for years and I'm really not looking forward to it coming in grey. Still intact down stairs 🙂

Junash, I'm going to a LGFB on Tuesday and so looking forward to it. I don't really wear makeup normally, so I'm going out tomorrow to buy some new stuff to take along with me. Did they tell you to take your own makeup with you? Did the ladies who've already been take their own stuff?

Cancer staging - my bc nurse where I had my op in glasgow said they didn't really use staging, it's more an American thing?!?!?! She said grade was more important. Looking at it myself though I am stage 1, grade 3. The tools they use for survival rates are outdated I was told, they don't take into account herceptin etc.

Jingo, I was also gifted with a baby at 42 🙂 I have 4 kids, two girls and two boys aged 34, 31, 29 and 9!!!! It sure is a shock to the system having a 20 year age gap between my youngest two!!

Can't remember who asked about temp but 36.4 is a normal temp.

Countdown to fec 3 next week but I'm feeling fairly positive. I know now I'm going to feel rotten for a while but then I get better, I just have to go with the flow. And that'll be me still the halfway mark, can't belief how quick the weeks are going by, we're soon gonna be finished with this c**p and able to get on with our lives - YAY!!

Love to all xxxx

[jingo_x]

Hi Sue456 I get flushed-faced on day 3-5 looks like I have been on holiday.  i take my temperature a lot and vary between 36 an 37.1 (sometimes higher in the evenings or after eating) - I am taking 37.5 as the magic number where I should start panicking, but we all have slightly diff temps so best to take regularly so you know what your 'normal' is - mine seems to be 36.4