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October 2016 starters

Sus12
Member

Re: October 2016 starters

One down Sue B! :). The anti sickness meds seem to be working for people. Hope you feel ok today and hoping that all of us get as few se's as possible!
Sue x
suebond88
Member

Re: October 2016 starters

Hi Liz,

so sorry to hear that your Chemo has been postponed, but, as the other Sue has said - it is important to get any infection dealt with first otherwise it could lead to further complications.  No one wants that. 😙

Woke with a slight headache in the night, and a bit nauseous now, but thankfully the meds are now kicking in. Planning a quiet day in...

chin Up.  Hugs to all

SueBxxx

Sus12
Member

Re: October 2016 starters

Hi Liz.
It must be difficult when as you said you've just got your head around having your first chemo tomorrow but it's definitely best to wait and know that all will be much better for you once the infection is cleared up and you won't end up getting your chemo stopped midway because of problems. I know though how you feel about just getting it started I'm very very anxious about my first one this Thursday and the waiting is dreadful but your oncologist will have made the right decision for you.
Hope it all clears up quickly now with the antibiotics.
Hugs,
Sue x
elisan
Member

Re: October 2016 starters

Hi all,

So, I was all geared up in my head for having 1st chemo tomorrow. At clinic today and as wound site is red oncologist worried I have an infection. Slightly frustrated because I have a large Seroma which the surgeon has not wanted to drain for fear of introducing infection, and now there is probably infection there anyway. So the long and short of it is my chemo is on hold for a week and I have a course of antibiotics.  I know it is the sensible thing but just wanted to get it started.

Have been reading all your experiences and wishing you all well with minimal and manageable side effects.

Liz x

OldDawn63
Member

Re: October 2016 starters

Hi Angie - I am from the September Starters thread, having started on 1 September. Sorry to hear your constipation was so bad you had to have an enema - I have never had to resort to that yet, although I am no stranger to constipation having been a martyr to IBS for years. I have had 3 cycles of FEC so far, and had very bad constipation while in hospital following the first cycle, and less bad constipation the second and third times. On the worst occasion there was no 'movement' for 4 days, even though I was eating normally, probably because my digestive system was completely wrecked by diarrhoea and sickness, and because I was also for 2 days on restricted liquids (1 litre per day) to treat abnormally low sodium levels. Lack of exercise while in the hospital won't have helped either. While I was in hospital, after the restriction on liquids was lifted, they gave me Lactulose and Senna tablets for the constipation. After I was discharged and the problem persisted, the oncology nurses also advised drinking plenty of fluids, including barley water with meals, which helps with your digestion as well as helping to protect you from UTIs. Standard advice is also to eat plenty of fresh fruit and vegetables, wholemeal bread and cereals, which I did. But the only thing that finally got me going (as it were) was glycerine suppositories. They were recommended by my GP a long time ago, and I have found they are the only things that work when I get really bad constipation that won't respond to any other treatment. They are not pleasant to use but neither is constipation, so if all else fails I definitely recommend you give them a try. They may not work first time, but keep trying and eventually they should have the desired effect. You can buy them easily and cheaply over the counter from chemists and large supermarkets. Senna tablets are also available cheaply over the counter but you can only get Lactulose on prescription from the hospital or your GP. It is a clear, syrupy liquid that comes in a bottle with a measuring cup, and you take it twice a day after lunch and after tea (10ml each time). Its function is to help soften your motions and make them easier to pass. Hope you don't have any further problems, but that this is of some help if you do.
livvy
Member

Re: October 2016 starters

Hi truey,
Thanks for the reply its reassuring to know its normal I just didn't fancy feeling like this until treatment is over! Hope you continue to feel well after your second fec and all goes smoothly for you. XX
Truey
Member

Re: October 2016 starters

Hi Livvy,

 

I had my first FEC right at the end of September so more in line with the October group.  I did have thr spaced out feeling and the wobbly legs last time, just as you describe. The good news is that it only lasted a couple of days - which was great as I was too unsure to go out walking alone or (obviously) to drive anywhere. Hang on in there it really was transient for me.

 

I had FEC 2 today, so waiting to see if it goes anything like FEC 1. Good luck everyone who is having chemo this week.

 

🍀

suebond88
Member

Re: October 2016 starters

Hi Angie,

sorry to hear about your tummy problems.  My nurse said that the bowells  could go either one way or the other!  No signs for me yet, but still early!

I am starting to feel a bit hungover though - without having had enjoyed the wine 🍷😳🤕. Not Fair 😒

Hugs to everyone

xxx

 

livvy
Member

Re: October 2016 starters

Hi everyone,
I had my first chemo last Wednesday,felt fine for two days then ingestion,constipation heartburn kicked in over the weekend!😞 hasn't been pleasant at all but after a trip to the chemist for supplies lol it seems to be sorted, I don't know how everyone else feels but I can only describe it as feeling weak,my legs feel like jelly! And i feel a bit spaced out and more tired then usual,does anyone else feel the same? And will it improve over the coming days? Hope everyone else is doing ok. XX
Angywd
Member

Re: October 2016 starters

Hi Sue and everyone, 

glad your first one went ok.  Think I'm about 4 days in front of you...had my first last Friday.  Last night was By far the worst so far, I struggle with my bowels anyway and even with the stuff the hosp gave me for constipation I ended up having an enema yesterday and it kept me up all night.  Indigestion and my stomach turning over and over.  

Tiredness has hit me like a wave, getting very frustrated with the little amount of energy I seem to have and feeling wobbly all the time.  My injection gcsf are given daily by community nurses who come out to me, seems I am lucky to have this service.  I do have the hungover feeling so many others describe as well.  

If I could manage to sleep properly I'm sure I would feel better.  

Sending big hugs to everyone 

Angie

xx💞xx

rubberbandgirl
Member

Re: October 2016 starters

Hey Sue, 

Glad it went ok. My first was yesterday, I'm just sitting waiting for side effects to kick in! It's like waiting to start feeling drunk!

I fasted for 24 hours before and will do until tomorrow morning (72 hours in total) hoping it will minimize any side effects like the studies are showing.

xx

suebond88
Member

Re: October 2016 starters

One Down Five to Go👍

I coped ok with the Coldcap - as others have said the first 20 mins or so is the worst, but once I'd aclimatised  it was ok, just tight under the jaw.

the actual Chemo was done via a cannula with the nurse right next to me and was easier than I thought.  I have antisickness and steroids to take over the next few days and will have mid cycle bloods taken in about 10 days.  Am feeling a bit fuzzy and heavy at the moment - am going to veg this afternoon 🤕

Hope everyone else is doing ok?

hugs to everyone

xxx

maryminder
Member

Re: October 2016 starters

Hi Sue,

Have steroid tablets to take for the next 3 days as well as the injections, I am not on FEC  just EC for the first 3 and then T for the last 3, not sure if this will make a difference to how I feel.

 

The community are supposed to be calling me today to make appointment for the line to be flushed will chase it tomorrow if I don't hear anything.

Hugs

Mary xx

Mumofmany
Member

Re: October 2016 starters

I don't know if I was expecting it to be horrendous and it wasn't so good or if it reall just didn't work x
Mumofmany
Member

Re: October 2016 starters

Thankyou il ring and ask x
Sue H-S
Community Champion

Re: October 2016 starters

Hi maryminder,

My FEC chemo was administered in the same way. I found it very helpful.

It is good to know that you are ok so far. Fingers crossed it stays that way.

However some side effects may start to come along further down your chemo journey. You are also likely to be on steroid tablets, which helps a great deal.

Once you are off them, do not surprised if you feel quite tired - and this is a cumulative effect as you go through the FEC treatments. Well done for doing the injection! I had mine done by the community team. Btw - the team, which flushes your PICC line, should also be able to do the bloods for you. Why not ask? I had the same challenge as you, in that my local lab was not able to take the bloods via the PICC line. If they can do it it might be worth making the relevant arrangements, so the blood results are back in time for your chemo. Are you on FEC all the way through or are you on FEC-T?

Hugs

Sue xx

 

swampy1901
Member

Re: October 2016 starters

Hi Mumofmany

It may be worth asking your GP if he will prescribe  a Limbo Waterproof PICC Line Protector.

 

https://www.google.co.uk/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=limbo+waterproof+picc...

 

Some areas routinely prescribe these or give them at Chemo Clinics as in my case but I know from these boards that this is not always the case. But it does make showering so much easier if you can get one.

 

Swampy

Vintage
Member

Re: October 2016 starters

Hi
Some of the larger pharmacys have them in stock or will order them for you. They are around £20.
Worth calling them to see if thay have any.
X
Sus12
Member

Re: October 2016 starters

Hi MofM,
I was given a prescription voucher to get one when I got my PICC line put in yesterday at the hospital but I had already ordered one from Amazon (cheapest!) as I was told at the chemo unit that they don't give them out. I've found there's a big discrepancy between the south small local hospital and the north main one!! I go to both for different reasons. It's very complicated but it's a very big county! I will now possibly end up with two so if anyone is struggling to get one send me a private message and I'll happily post one on if so!
Hugs,
Sue x
Mumofmany
Member

Re: October 2016 starters

Where did you get then picc line cover from please I'm struggling with showers tried clingfilm as suggested x
Mumofmany
Member

Re: October 2016 starters

Hi was the cold cap really unpleasant ? I had mine last Monday and it didn't feel all that cold I'm worried it wasn't cold enough as I didn't find it unbearable at all x
maryminder
Member

Re: October 2016 starters

Hi Ladies

 

First one done,not sure what I expected but it all went very smoothley, as mine is not given by drip but by syringe the nurse was with me the whole time so was able to ask questions and she was very reassuring all over in a couple of hours, left with my next appointment (7/11), two bags of medication, injections to administer myself for the next ten days ( 1st one done easier than I thought and i hate needles) and everything for my Picc line to be looked after at the community clinics. Strangley though my local path lab at the hospital will not take blood from picc line so have to go to Chemo Unit each time, just seems a waste of there time to me.

I am probably over prepared but I have two chemo caddy's (as per Sue h-s) rather have it and not use it than need it and not have it, slept quite well woke with headache about 3.30 so took temp(normal) before taking paracetemol, head is a bit fuzzy today and quite tired so will be in my pj's watching tv and will do a daily " how I feel" diary so when I go next time I will remember and ask if I have questions.

 

Update on cat from yesterday it seems she may be allergic to chicken (quite common apparantly) so as most dry cat food is chicken based with other ingredients we are now hunting down alternatives, in the meantime she is on steriods as well.

 

Hope all goes well for anyone starting this week, best wishes and hugs Mary xx

Sus12
Member

Re: October 2016 starters

Good luck for tomorrow Sue B and hope all went well today Mary. Had my PICC line in this afternoon, heart scan tomorrow and chemo Thurs. Feeling a bit over hospitalised!
Hugs to all,
Sue x
suebond88
Member

Re: October 2016 starters

Thanks ladies 👍

Am fully prepared - as much as you can be anyway,

will let you know how I get on.

best wishes to everyone starting this week

😍👍🤕

Angywd
Member

Re: October 2016 starters

Hi all, good luck to Mary and Sue and anyone else starting this week 💐

I had my first on Friday. Just been feeling very very tired but I've been lucky to get 3 or 4 hours a night since diagnosis and I'm waiting for ct scan results as well so naturally my brain doesn't switch off at any hour!

Good advice totally, plan to do nothing and then only do what you feel up to doing...

I need up back in hosp yesterday, another infection in wound site.  But home again now.

No sickness but I have been religious about taking all the meds as being sick is the worst thing for me.

Big hugs to you all, we can do this 😍

Angie

xx

 

assaritti45
Member

Re: October 2016 starters

Hiya Suebond88,

 

everyone is very different, i know on my first session i was very nervous the day before but on the actual day i was calm, once your there and it all starts time will fly and you will be home before you know it.

 

the first 2 days apart from feeling a little neasua i was ok, but i think mine was possibly a little more me thinking it then actually was not sure really.

 

only advice i can give is be preapred to do nothing, then anything you do is a bonus, do things in your own time and when you want. make sure you eat and drink plenty of fluids. chemo can give so many side effects most wont effect you hopefully.

 

take care and hope everything goes smooth for you tomorrow xxx

suebond88
Member

Re: October 2016 starters

Morning everyone.

hope everything goes well this week for everyone starting their Chemo.

it would be great to compare notes and feelings....very anxious about mine tomorrow

hugs to all

xxx

assaritti45
Member

Re: October 2016 starters

Morning ladies,

 

Mary good luck today hope all goes smooth and have one down.

 

hope anyone else having chemo today also goes smooth.

 

i am now on day 6 and today feel a little better but did have to visit hospital yesterday, passed out totally no idea why so got checked out at the hospital, was given fluids had bloods done and given a script for antibiotics which i will collect today. Today now have a cold typical lol.

 

how is everyone else doing?  xxx

assaritti45
Member

Re: October 2016 starters

thats good hun, i called chemo line and got more 🙂 xx
elisan
Member

Re: October 2016 starters

Hope all goes well today Mary. 

Hugs

liz

Sus12
Member

Re: October 2016 starters

Hope it goes well for you with your chemo later today Mary. As you say it will be one out of the way and on your way to the finish line and recovery! Shopping with a friend (and a nice coffee stop with cake I think :D) sounds a good way to spend your day beforehand. Mine is Thurs, I think I'll organise something similar!
Hope the vet can sort out your poor cat. It could be stress or a skin irritation.
Lots of hugs and hugs to all for this coming week.
Sue x

maryminder
Member

Re: October 2016 starters

Hi All,

 

So todays the day, first Chemo (EC) at 4pm was supposed to be 11am but unit had double booked so had to change, so now I unexpectedly have to take the cat to the vets  (poor thing is pulling her fur out for some reason, maybe it's stress) and then I am shopping with a friend, my favourite pastime.

 

I am feeling surprisingly calm today, the time is here at last and with the first one out of the way it won't be the dreaded unkown any longer, and although there will be another five to go I will be heading towards the finish line.

 

Hope everyone's day goes well, will catch up in a day or two, 

Hugs and Best Wishes Mary xx

blueash
Community Champion

Re: October 2016 starters

You have to have a PICC fitted by appointment - they will not just do it instead of the cannula. I was offered it straight away and did not need to ask for it. It goes in just above the elbow and you don't feel a thing because they use a local anaesthetic. All you blood is taken via it and all your chemo given through it, the only downside is having to have it cleaned/flushed every week/10 days.

Angywd
Member

Re: October 2016 starters

Thank you Sue for your advice.  She actually had to put my arm in a bucket of hot water in order to find a vein, and that's on my first session!

Have only just got back from the hospital as I've had high temps and dizziness all day.  Infection in my wound site, again, so back on anti biotics. 

Oh just for one good nights sleep, I've tried every tablet going.  Think I need a stun gun!

Ive borrowed a neck warmer which can go in the microwave ready for my next cold cap session but will also look into heated hand warmer too.

big hugs

Angie

x

blueash
Community Champion

Re: October 2016 starters

Khajista- the Penguin Cold Caps might be an option:

https://penguincoldcaps.com/

 

Most hospitals in the UK use the Paxman machine but with the penqguin you freeze individual caps and change them every half hour or so.

Angywd
Member

Re: October 2016 starters

Hi Sue
i had my first chemo y'day and I seem to remember that you mentioned before asking for a pic line and the cannula's become painful after a few sessions? My nurse wasn't keen to let me have it and the breast care nurse was quite dismissive of it too.... I'm on 3 X Fec then 3 X T.. I definately had the burning sensation as the nurse fed the red chemical through the cannula. Do you think I should insist on the pic line next time?
im all over the place waiting for ct scan results so I'm possibly not being as assertive as I should be?
i did manage to cold cap, but omg how hard the first 15 minutes was 😰!!
Thanks for any advice
hugs
angie

Sus12
Member

Re: October 2016 starters

Hi Swampy.
No chance of a free Limbo sleeve where I live lol. I asked and we just get a kind of "waterproof dressing that isn't really waterproof" (chemo nurse quote!). Guess as is the case often with things it depends very much on where you're being treated. You would think that it should all be the same for everyone, everywhere for everything!
Angle how did you manage to get through the first bit of the cold cap? I hope I can cope with it as I want to at least try it. Any tips from anyone who has had it gratefully received!
Sue x
swampy1901
Member

Re: October 2016 starters

I was given a Limbo PICC line protector in my goodie bag (if  you can call it that lol!) from the Chemo unit. It contained spare bits for the PICC line and the Limbo sleeve and as such is/should available free on prescription!! 

 

Swampy x

 

Sus12
Member

Re: October 2016 starters

Thanks for tip re headband. It sounds preferable to me than adhesive moleskin lol. I'll get one!
I've ordered a Limbo PICC line waterproof protector to help with showering issues.
Apologies if teaching people to suck eggs etc but The Look Good Feel Better website has a kit you can get sent. It has a new book and DVD about makeup tips etc. They ask for a donation if people are able to for it from £5. It looks really helpful. Loads of other info on the site as well and a link for courses coming up.
Sue x
swampy1901
Member

Re: October 2016 starters

Hi Sus12 

I just used a thick headband with the Cold cap - it worked for me!

As for the PICC line - whatever makes treatment easier has to be a good thing. I had a Heart scan earlier this week in the Nuclear Medicine Unit and it took two attempts to get a butterfly cannula in to me for them to inject stuff. I know from my days of donating blood that my left side is far more generous in that area but since my MX that is now a thing of the past and I dread anything that needs blood or work with the veins on my right side now. The slight inconvenience of living with the PICC line regarding flushing and difficulties of showering are far preferable to the discomfort  of trying to find a vein whenever it's needed. But as you say some health trusts look to use the cheaper alternatives first which is not a lot of fun for others who are having chemo.

 

 

blueash
Community Champion

Re: October 2016 starters

I just use a strechy headband when I cold cap. I was told to bring it along with a spray bottle, some conditioner, a wide tooth comb and a towel at my pre-chemo chat.

 

I had a PICC line right from the beginning and I thought everyone did but in some places you only get it if you have issues with your veins.

rubberbandgirl
Member

Re: October 2016 starters

Hello, my friend who has completed treatment now swore by hand warmers to help get the chemo through quickly and prevent pain around the cannula. I start first chemo on Monday and have my hand warmers ready. Don't know if it will work but will give it a go x

Sus12
Member

Re: October 2016 starters

Hi Angie.
My oncologist said that he insists on a PICC line as he has seen with his own eyes the problems that can often happen with repeated use of a cannula. My oncology nurse said that not all health authorities use them as it costs more money!
I sympathise with the assertiveness bit. I think I've felt I ought to just be grateful for being treated but we deserve the best treatment possible depending on our individual circumstances.
By the way I've just read about getting some Scholl + moleskin padded roll to cut to fit your forehead before cold cap to help protect your skin. Anyone else used anything?
Sue x
Angywd
Member

Re: October 2016 starters

Hi Sue

i had my first chemo y'day and I seem to remember that you mentioned before asking for a pic line and the cannula's become painful after a few sessions?  My nurse wasn't keen to let me have it and the breast care nurse was quite dismissive of it too....  I'm on 3 X Fec then 3 X T..  I definately had the burning sensation as the nurse fed the red chemical through the cannula.  Do you think I should insist on the pic line next time?

im all over the place waiting for ct scan results so I'm possibly not being as assertive as I should be?

i did manage to cold cap, but omg how hard the first 15 minutes was 😰!!

Thanks for any advice

hugs

angie

 

Nicky G
Member

Re: October 2016 starters

Hi all on my 3rd fec with 1 left then on to T was just wondering if anyone on her is from Coventry x
elisan
Member

Re: October 2016 starters

Thanks blue ash,

I will have a wee look at guide on machine once attached

hugs

liz x

elisan
Member

Re: October 2016 starters

Glad you ok Sue, just what you didn't need. 

Had a look at Paul's page, well done him, what a fantastic son. Hope he reaches his target.

wishing you a relaxing weekend

hugs 

Liz x

elisan
Member

Re: October 2016 starters

Thanks for info. I admire how confident you sound about your appearance and I hope that I reach that point.  Hope side effects don't get too bad for you,

big hugs xx

swampy1901
Member

Re: October 2016 starters

Hi assaritti45

I tried the cold cap and found that taking pain killers an hour before and concentrating on a difficult sudoku puzzle got me through until I was used to it. Add to that the nurses are talking to you while changing syringes on the machine and your companion if you have one  is keeping you occupied.  I soon became used to the cold cap. But however it goes my hair is already cut and my wig is ready and sleep caps and other bits ordered and in the post!!

I have been given extra anti-sickness to take after the ones prescribed by the oncologist and I was given more while being treated - I really think they are trying to calculate the best dosages for you personally so that you don't suffer unnecessarily. I have now finished everything that I was prescribed and the district nurses are coming to do the filgrastim injections. I could do injections when I came out of hospital with a boxful of clexane but the chemo has caused me to lose sensation in my hands and fingers - really weird sensations and using a phone or laptop is littered with mistakes which then need correcting lol!! As the nurses are still coming to do dressing changes and picc line maintenance they are not too worried about another little job - the paperwork takes longer than the injection lol!! Stabbing myself with needles when I can't feel things with my fingers is not high on my list of tasks to do right now especially with a tummy wound to contend with!!

As for extra meds - when I spoke to the chemo nurses yesterday about various symptoms I was having yesterday they were suggesting things to try and after a chat with the doctors surgery receptionist - I had a phone call back within half an hour saying my prescription for Gaviscon and Difflam mouthwash was ready to collect. Ace service!!! So all in and ready if I should need it and things deteriorate!!

 

 

blueash
Community Champion

Re: October 2016 starters

With the cold cap it depends on which regime you are on. It is always 30 mins before and all through the infusion. It differs on how long after, with docetaxel for example it is only 20 minutes but with others it is a lot longer. On the machines at my hospital there are  guides attached and I have read them.