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AUGUST '17 Chemo Starters

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Sib

I bet you've been thinking about that Bon jovi line for sometime now?!

I've put this on other threads...but worth sharing here.....when I was having radiotherapy the radio is on in the background. One day I was lying there, and Frankie goes to Hollywood came on with 'Relax' and Hit me with your laser beam'!!! I thought someone's having a laugh!!

Sue xx

Sib
Member

Re: AUGUST '17 Chemo Starters

3rd fec chemo done today, after more bloods as ones taken on Monday were to low, however this lot of bloods were good enough for chemo to go ahead so in words of Jon Bon Jovi , I'm half way there and livin on a prayer!!!
Further oncology appointment and heart scan appointments before next chemo (dotaxel) and herceptin. Next chemo appointment is 7 hours as they need to monitor for reaction.
Hope we are all keeping well and staying positive. Xxx
CK
Member

Re: AUGUST '17 Chemo Starters

Hi ladies.
I hope you don't mind me jumping on this thread as I had first chemo on Sept 4th but the posts on here help me tremendously.
Just want to say well done to you brave ladies and I will be noting down all the useful information towards my next chemo on Sept 27th.
Lots of love.xxx
Cookiesim
Member

Re: AUGUST '17 Chemo Starters

hi all hope everyone is coping. Day 8 and still in my pyjamas but starting to eat a bit better and the dreaded constipation seems to have resolved. I now find myself obsessing over the size of my lump and I'm convinced after 2 cycles it's bigger not smaller. Having all this time to dwell and worry is no good I need to find my positive pants again xx

 Melly I had palpitations after this cycle they seem to have subsided now.  x

 ((hugs everyone)) x

MAHJfarn20
Member

Re: AUGUST '17 Chemo Starters

Hi ladies.

I am having 6 cycles -3 x fec then 3x t. Had first cycle 11th August, followed by 2nd cycle on 1st Sept. I can stand blood and guts no problem but absolutely hate sickness. Needless to say, the nausea is my biggest problem. First cycle made me very sickly for about 6 days before I started to improve. Hair started falling around 17. Had signed up for Macmillan Brave the Shave but ended up having to have it shaved off a week earlier. Up to yet, raised around £700. Second cycle, sickness lasted round 8 days. Feeling much better now. Just hoping that the nausea doesn't last longer each time. 

I have bloods taken the day before I am due the chemo by the district nurse. She comes round every Thursday to flush and change my picc. Round 3 due on 22nd...I will be half way through then. Should finish in time for Christmas but then having radiotherapy afterwards (probably in January-lovely birthday present, eh?).  

Looking forward to my 'good week' now... x

 

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hi Mellylew. I too suffered from tiredness this time, am Day 13 cycle 2 and felt a lot better yesterday and today. So it will improve, keep going!
Had my PICC line installed this afternoon. Veins didn't even want to behave for that. Took her 3 attempts, and 4 different sites before she had success. So I guess I'm pleased I had it done, as have 6 more cycles to go and would have been even harder without. Just feeling very tender tonight. Seems to be one thing after another for me and none of it straight forward 🙄 Trying not to look too far ahead for more problems!
My veins are sore Sue from my first cycle. The nurse today said it's not unexpected and it will slowly resolve.
Hugs to all ladies, hope you all manage to get some sleep. Xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Sue..my oncologist appointment is usually a week ahead of chemo day where they check my weight and checks meds..my hospital is 40 minutes from where I live, so my bloods are done at my doctors... although I've hit oncologists on holiday , staff shortages and appointments all out of order...annoying.. x
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Doesn't sound like a very good system! I got weighed and bloods taken, 2 days before chemo. Talk to them about nausea as there are other things that they can try.
Take it easy and don't beat yourself up. You will get through this xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Hi Sue..yes I do get weighed..but my last oncologist appointment was a week after 1st chemo (as she went on holiday the week I should of seen her..!!) So since then I've lost just under a stone in weight ( in 3 weeks) due to not being able to eat much and anxiety.... hopefully she may alter my dose a little as I'm struggling with so many side effects...xx. thanks
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Ladies

The fatigue was the hardest thing for me to deal with. I didn't leave the house for a week on each and every cycle.

Sue, do you not get weighed before the start of each cycle? At my hospital, it was standard...blood, weight and consultant app. If not, then you definitely need to talk to them about it.

Sending all hugs.

Sue xx

Mellylew
Member

Re: AUGUST '17 Chemo Starters

Hello ladies. I'm currently on day 5 after cycle 2. Been in bed since Sunday with no energy whatsoever and getting ectopic heartbeats every time I eat and drink and try and move about. Anyone else get these? They are not very nice but I have mentioned them to my chemo nurse. Fatigue has really hit hard this time, I'm hoping I will be up and about again shortly. I shaved my head on day 14 of the first cycle as I couldn't cope with it falling out and covering my brush every morning. I had long hair but it doesn't look too bad, I still have a bit of hair on top! Hope you are all doing ok ladies, one step at a time eh?! Xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Morning August ladies..glad to hear most of you are getting to your better weeks or just about to have chemo 3. Good luck Sib and Ali this week and Mary Kate at the weekend..
Well I'm day 9 today and have had a rough 5 days....when they say in booklets and leaflets you wont get all the side effects..well I appear to get them all !!! I'm going to mention this to my oncologist next Monday, wonder if they can reduce the dose a little as I've lost a stone since I started chemo a month ago and I'm sure my dose feels high because of my previous body mass index... This one has been pretty much the same as first one. So hopefully I'm on the turn for the better week.. I also have pain , stiffness and swelling around my elbow and towards the wrist... the veins are very sore..!! The first time the nurse put a heated pad on my arm and the cannula went in no problems and no discomfort or pain after...last Monday because they were so busy and rushed off there feet, I didn't get the heat pad and after two attempts to get needle in if finally went in but was sore and has been for 5 days now.... I'm in agony when I try and bend elbow or lift...hope its not a blood clot..!! Will try hot water bottle today along with ibuprofen gel...it just seems to be one thing after another... !!!!
Fairy hows your hair doing ?..I've lost half if it after cold capping..but have a very thin covering on crown and top of my head but a decent covering at back and fringe.. definitely feel the cap didn't touch top of head first time and if it had been dampened first it may have alleviated the slight thinning on top of my head..!! Too late now tho......if you didn't know me you would just think I have thin fine hair .I'm now just washing it once a week... I can put a thin scarf over thinning part to cover it..but I havnt been out all week because of side effects..!! So havnt tried it yet... does your hair keep shedding every cycle? Mine still sheds a little but not as bad as day 19/20 on first cycle... but if I have any more major shedding, I will have not much left..!!! Good luck and big hugs to you all xx
Ali S
Member

Re: AUGUST '17 Chemo Starters

Hi ladies. Glad we all seem to be doing ok.
I've just been told that my bloods are fine so will be having my third cycle on Thursday.
I've been wondering about the flu jab as well but forgot to ask. I'll ask the nurses on Thursday.

Sib, I'm having problems with the vein in my chemo arm as well. I've just mentioned it to the team and they said to put heat on it whenever you are sat down and to mention it at the session to see if they can use a different vein and make sure they use a heat pad.
Good luck for tomorrow Sib and to all the other ladies having treatment this week xx
HelenP
Member

Re: AUGUST '17 Chemo Starters

Thanks MaryKate amd SueC, it makes to get a flu jab right before a new cycle, will put it on my 'to do' list...I need stuff to do, feeling seriously lonely and at a loose end now my kids are back in school and college!
MaryKate- I'm told I can take paracetamol any time as long as I take my temp first to make sure it doesn't mask an underlying infection. I've done it a couple of times this week for a headache.
Mary-Kate
Member

Re: AUGUST '17 Chemo Starters

Hi Ladies

 

Hope you're all doing OK after your latest rounds of Chemo and not suffering not badly from the side effects.  I'm now Day 9 after the second round and recovering from the 'chemical hangover' and finally the dizziness is going.  Suffering more with fatigue this time round but probably because I keep overdoing it, so just trying to rest as much as possible.

 

Interesting about not taking paracetamol in case it lowers your temperature - the nurses said it was fine to take it, and I have been taking it for headaches, but I'm thinking I should maybe take ibuprofen instead...

 

Helen - I asked the Chemo nurses last week about having a flu jab as I was told I should have one in Sept - they told me the best time for it to be the most effective is the day before treatment or the day after.  Not sure if that's the advice other people have been given?? I've also been told to book in all my family, just in case...

 

Good luck with your Cycle 3, Sib - you're nearly half way through!  And to anyone else who has treatment this week.

 

Hugs to you all and keep strong, we're getting there... xx

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Helen

I would assume the third week, seeing as the first week you really don't want to do anything and the second week your immune system is low. However, its not something I did, so please check with your chemo team.

Sue xx

HelenP
Member

Re: AUGUST '17 Chemo Starters

Quick question SueC...flu jabs, when in the chemo cycle do they recommend we have one? Need to book the whole family in apart from me! Our surgery gets booked up so quickly.
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Afternoon Ladies
Just checking in to see if you're all ok?!
Sending a virtual hug!
Sue xx
Sib
Member

Re: AUGUST '17 Chemo Starters

Cycle 3 due on Wednesday had bloods done today, but my arm (vein) is sore and I'm struggling a bit to straighten it. Nurse managed to get bloods eventually from back of my hand. As I've had mastectomy I can only get bloods taken from one arm.
Fatigue has been vastly increased this time can't believe how little I manage most days. But other SE are now gone ie constipation and sore mouth, bad taste.
Big hugs to August chemo ladies, we are marching on. Xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Whilst we struggle with SE we think it's never going to get better, and so after 12 days of cycle 2 I am so pleased to say that I feel a bit more like myself today. Tiredness has been overwhelming this time but I've managed to get a few things done this morning without feeling completely whacked. 

Onwards and upwards to all August ladies I hope you all turn the corner soon too. In the meantime lots of hugs. Xx

Cookiesim
Member

Re: AUGUST '17 Chemo Starters

oh bless everyone and all these rubbish side effects and anxieties, hope your all coping as well as you can. I'm having a nightmare with the constipation at the minute.  It's so hard but we can do this 👊🏻 X

fairy
Member

Re: AUGUST '17 Chemo Starters

thank you.. im gettin myself in a right state reading the horror stories of the se and i have 4 starting on the 25th.. i also have 3 young children so really hard and feel so guilty on them xx
Cathysid
Member

Re: AUGUST '17 Chemo Starters

Fairy, I had docetaxel in my first chemo(combined with other drugs). Side effects kicked in on day 2 and were much improved by day 8. Everyone is different but this seems typical of most people's experiences.
I also had carboplatin herceptin and pertuzamab so hard to know which side effects were from which drug but mainly nausea, diarrhoea and fatigue, sore mouth, nose bleeds.
Since day 9 I've been feeling pretty good!
Try not to worry, but expect to need a bit of help days 2-8
Cath x
fairy
Member

Re: AUGUST '17 Chemo Starters

does anyone know how long the se of docetaxal last.. im dreadin it for my next lot on 25th sept
Cathysid
Member

Re: AUGUST '17 Chemo Starters

Fairy,
Sounds sore! Could be oral thrush so definitely get some advice as you may need antifungal treatment. Hope it gets better quick. They can give you pain relieving mouthwash too which would make you more comfortable.
Xxx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Fairy so sorry you're in pain. Do you have a team you can call over the weekend? Do ask for help they will be able to make you feel better. Hoping you get sorted soon. Xx

fairy
Member

Re: AUGUST '17 Chemo Starters

my throat has white ulcers and my uvulva is also white.. yuk.. any tips its really painful
Sib
Member

Re: AUGUST '17 Chemo Starters

I also got red face and was told it was steroid flush! I too was told to not take paracetamol due to lowering of temperature but was also told to avoid ibuprofen as bad for tummy! Seems we get quite a bit of conflicting advice which can be confusing for us.
I'm day 16 of 2nd cycle and apart from getting tired more quickly than usual, I'm doing good now. However it all starts again next week !!!
Sending hugs to everyone. Xx
.
Ali S
Member

Re: AUGUST '17 Chemo Starters

Hi all. Hope you are all doing ok.

Butterfly, hope you are still doing ok.

Cookiesim, yes I had the bright red face after my second round. It lasted about a week but did come and go. I hope your headaches stop soon. I really suffered with them after my first cycle. My chemo nurse told me my dose is really high compared to others so maybe you are having the same dose but over a longer period.

Sue I was told to take paracetamol and not ibuprofen, especially for the first few days after the chemo. There was a reason why but I can't remember now. They did say to be aware that it can lower your temperature though.

Claire, I'm glad you are doing ok after your shave and we'll done for raising all that money.

Take care all xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Claire, feeling a bit better today as I actually had a decent night sleep woohoo 👏 Had a short walk, but not much energy so came back feeling weary. Still, an improvement however small is good and reminds us that we will all start to feel better as the cycle goes on. 

Trying to think positive thoughts, that the chemo is doing its stuff and giving me the best chance.

Hope you're all having a good/better day today too. Xx

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Ladies

Not sure if I've put this on the thread before, but worth repeating.......I was advised not to take paracetamol because it could mask a potential fever. However it is OK to take ibroprofen. So maybe stick to those if you can. 

Sending hugs 

Sue xx

ClaireH81
Member

Re: AUGUST '17 Chemo Starters

Hi All,
Butterflyflyfree sorry to hear you've been feeling rubbish! I hope it's improved!
Ali S I've found some days in emotional for no reason I think it's just part of everything and needing a release.
I had my head shaved last night, I've spent the week wearing a scarf due to all the hair loss and it wasn't as bad as I expected. I took my little girl with me and she was fine. My friend signed me up for Macmillan brave the shave (even tho I think it's a bit fraudulent as it was dropping out anyway!) but I've managed to raise £1300 so far so at least some goods come from it!

Sending you all los of hugs xxx
Cookiesim
Member

Re: AUGUST '17 Chemo Starters

Hi all hope your feeling okay. I am starting to emerge from the chemical hangover after getting my second cycle Weds. Drank loads, took paracetamol but no shifting the headaches. Indigestion seems worse this time but I'm on the omeprazole. I can't really sleep much so sitting up has helped. Anyone else get a bright red face? I looked in the mirror this morning and with my new hairstyle and big red face looked very much like Friar Tuck!

 

Ali S. I asked my chemo nurse about my regime and why its eight cycles, she wasn't sure as said it's a new regime. My onc lead me to believe it was started for tnbc. Maybe just the new standard for my hospital. I'm sure everyones treatment is tailored to their own needs. My tumour is also quite large so maybe I need an extra dose!  🤢 

 

Hugs ladies x

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hi Ladies, thought I'd dealt with cycle 2 quite well, but then yesterday felt rubbish, day 7. Stomach not happy with pills, so have returned to omeprazole and anti nausea and am beginning to feel a bit more normal again. Would really like a decent night sleep though. My tumour been grumbling too, maybe means something's working, got an untrasound booked for next week to see if there's been any shrinkage before cycle 3. 

Hope you other ladies are managing with your medications to keep the SE at bay, and get a good night sleep when you get there. Xx

Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Evening Ladies

Just wanted to pop in and say hi. How are we all doing? Hope your 2nd cycles are going OK. Is the 2nd one easier? In terms of you know what's coming?

Ali, I think we all have those days, especially when we're feeling tired and having to deal with everything.

Horrible time having to deal with hair loss too. All I can say is that after the initial loss, you sort of resign yourself to it.

Sending you all a hug.

Sue xx

 

 

Ali S
Member

Re: AUGUST '17 Chemo Starters

Hi ladies. I hope you are all doing well after your latest rounds of chemo.

Cookiesim hope everything went ok today. Interestingly I'm also triple negative and I'm having FEC-T but just 3 of each.

I'm day 14 after my second round and I had a few tears last night. Not really sure why other than my husband being away with work so I was on my own. I've had a better day today though and met up with a friend for coffee. I have even worn my wig all day. Hugs to all xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Good luck for today cookiesim..hope you finally get chemo 2 !! Hope all goes well...big hugs. X
Cookiesim
Member

Re: AUGUST '17 Chemo Starters

Hi all hoping cycle 2 goes ahead today. I think the treatment type and amount depends on the type of cancer. I'm triple negative and think the 8 cycles and 2 types chemo is standard 😑. ((Hugs everyone))
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

That makes me feel better, thanks Sib! Xx
Sib
Member

Re: AUGUST '17 Chemo Starters

I had horrible smell from my scalp/hair too but I thought it was my imagination or it was the chemo coming through my scalp? My sense of smell is greatly heightened anyway, so glad I'm not only one who noticed it. X
fairy
Member

Re: AUGUST '17 Chemo Starters

just makes u wonder how some have more maybe their lower doses spread out over longer periods
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

From what I see Fairy it just seems to be so personally prescribed for each individual. I guess it's good that there's so many options for the doctors to decide which is the right one for each of us. Xx
fairy
Member

Re: AUGUST '17 Chemo Starters

just curious why do some ppl have 8 cycles and some 6.. im having 2 fec100 then 4 docetaxel with herceptin and perjetta xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hi ladies, day 6 cycle 2 EC for me, only a quarter through, as have 4 of this and then 4 T, plus Herceptin and Pertuzamab. But 1/4 is a start! Haven't had the muzzy head this time round, but feeling extremely weary today which I didn't have before. Nothing much to do though so have been kind to myself and just rested. 

Hope the cold cap does the job for those of you using it. Having gone for the shave, I'm all stubbly which continues to fall out but is not so traumatic as when it was longer. Don't like the smell though of, what I guess is, the hairs dieing off sort of a singeing smell, weird and upsetting. Sorry if that's tmi 🙈 Xx

fairy
Member

Re: AUGUST '17 Chemo Starters

hi im gonna see how much hair i have left by cycle 3 and decide im scared if i dont try it wont come back as heard the t part can cause permanent hair loss.. my veins were playing up and there were 2 attemos by 2 different nurses.. they finally got it in on the side of my wrist ouch.. also low blood pressure at 104.. this is a crap journey for us but will help us in the long run and all be worth it xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Hi Ladies,
Feeling headachy and a little nauseous today but also very tired..those pesky steroids are also causing insomnia for me to !!
It seems like all of us that have cold capped have bald patches on top.. whereas my hair is very thin on top its stronger at the back..the cold cap was done right yesterday as my sister supervised it to make sure it sat better than the first time..lol..it sat a little further down at the front unlike 1st time.!! This might have been why the cap didn't touch the top of my head as it should have... the 1st chemo nurse I had didn't seem to bothered about the fit..as if it was a chore..!! Which is sad when its our hair that's at stake.. ClaireH81 I feel old with this bald patch and a lot more grey around that area..lol..I can just to say cover it with hair around it..but as I'm 5'10 only taller people will notice it.. !! my nurse yesterday was lovely...very supportive of cold cap ..she put argon oil conditioner on after we dampened it and my hair does feel less sensitive this morning..I'm going to try and hang on till the weekend to wash it next... the nurse was saying coconut oil is good too to help tingling and itching and also regrowth..!! I can't wait to start feeling more human next week, I hate feeling blah... cathysid I know what you mean about the taste of food now after chemo 2 . Last week everything tasted good for me... but not today..plain biscuits and toast today...!! Fairy are you going to try cold cap for chemo 3 ? Or are you going to shave it off ..
Claire ,
I've read up about Nioxin it sounds good especially the scalp spray. No4 which they do a starter kit for chemically treated hair is for us and you can get it for about £20. ..I think I'll wait a few weeks and see if there is any hair left before I spend £20..!!! Lol.
Hope you get your date soon Cookiesim its horrible to just be hanging on for a date.. hope you get a date soon..
I also had two attempts to get the cannula in. My veins didn't seem good yesterday also..normally they put a heat pad on to help. but because they were so busy I didn't get one, the first attempt hurt a little.!! 2nd one better..
Big hugs to August ladies were all 1/3 through now. ( well nearly all !) Xx
Cathysid
Member

Re: AUGUST '17 Chemo Starters

Helen - there is a lot of discussion on the September starters thread about picc vs port so worth a read.

Can't believe I was naive enough to think I could eat salad on chemo! My tastebuds have gone haywire and any fresh food tastes vile! Chicken soup was ok though. Hoping the nausea and fog lifts soon.

Well done everyone who has got through the second - a third of the way there now!

X
HelenP
Member

Re: AUGUST '17 Chemo Starters

Morning ladies!
Had chemo 2 yesterday, they took 5 attempts to get the canula in, my veins have gone into hiding! Am thinking they want to try a picc line or port for next time. What's the difference? I want to be well informed before they broach the subject, I'm reticent about it all really.
ClaireH81
Member

Re: AUGUST '17 Chemo Starters

Hi everyone
Thank you for your words of support re hair. My little girl was fine about it I'm booked in on Thursday evening for it shaving and taking her with me.
Thank you for the link fairy I'm looking for different scarfs online now to wear around the house and out if I feel confident enough. I currently look like an old man with a bald patch on top lol. Sib sending you a big hug I think sometimes it must be harder with older children as they understand so much more and therefore worry more! I'm sure your boys will get used to seeing you in your wig and they will be so proud of you! Cookiesim Im using a kind of pre tied scarf at the min, the inner part is like a hat with the scarf already tied around it - I know I won't be able to tie them! I hope it goes ok today getting your wig.
Cathysid definitely go and ask for alternative meds for nausea, they gave me different this time( I haven't the name to hand) but they were fab - I took 1 at night as they are also a sedative - took for 2 x nights and it's been much better
Sue58 & fairy I hope you're both feeling ok tday following number 2 yesterday, sue I've heard nioxin is good for helping thinning hair but not sure if it'd work whilst having chemo, I've asked my hairdresser to get some in stock for afterwards tho lol!
I hope the SE for everyone aren't too bad today. Good luck everyone heading for number 2 xxxx
fairy
Member

Re: AUGUST '17 Chemo Starters

i also had my 2nd today and swapping to thp next time.. i also perservered cold cap again and head was much more colder and uncomfortable as i also have sparse patches on top.. been the worse thing losin hair i think x