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June 2016 starters?

Terriannes90
Member

Re: June 2016 starters?

Marije try after eights the dark chocolate is bitter & I can taste the mint so worth a go!

Tinky try lemonade with dash of lime it burns cos I've got thrush but it takes away bad taste for a split second! Tho gonna try pineapple chunks & juice as read on here it helps.



Alice2016 please don't worry take each treatment as it comes, we all react differently I sailed through fec and with only 2 more tax to go I can see the light at the end of a very long tunnel.
Love to you all ❤️

Marije
Member

Re: June 2016 starters?

I can't even taste my chocolate anymore, HELP! 

Alex2016
Member

Re: June 2016 starters?

Girls, so sorry you are all having a bad time on T. I'm only only my 2nd FEC, so have a long way to go. I'm not far behind you in feeling rotten either. Dreading changing to T if it means it might even be worse!
Tinky, like you I was worried I wasn't drinking enough as any drink tasted foul, like pond water. I tried a bottle of 7Up on Saturday, through a straw, as lips quite swollen and did find it quite read refreshing, if a bit gasy. However, I did worry I would then end up on loo, as tummy grumbled quite a bit lol. Then last night, I tried Ribena, but made it quite strong and it seemed to taste semi-normal. Maybe worth a go? I'm day 7 post 2nd FEC and only starting to ease with the nausea and dreaded "d" from yesterday. Mouth issues now the main problem. Been rubbish. 😪
Hugs to you all, it isn't an easy road. X
Tinky
Member

Re: June 2016 starters?

Hi ladies

 

Sorry to hear your news post T. My bus seemed to move off on Saturday (day 5) with only 2 days of being laid up - everyone is different.  Even if it is temporary & I know there may be a build up effect for next treatments, lovely to be able to do a few things, even if it is very slowly & breathlessly!

 

However it still seems a full tme job managing the sore mouth, sore bum from diarrhoea (sorry too much info!), eating, drinks tasting awful etc.

 

Anyone found anything to drink which tastes better?  I'm not drinking nearly enough.

 

Sending hugs - we will all come out of this, even if sometimes it doesn't feel like it!  x 

 

Terriannes90
Member

Re: June 2016 starters?

Oh popkit!! What a nightmare! My mouth is so sore but today I bought daktarin oral mouth gel & my tongue feels less swollen and taste is very slightly better. The pains in my thighs, knees & ankles seems to be easing off tonight but like you I haven't really got out of bed for last few days - so fingers crossed we start to feel better tomorrow. I do hope so.
Lots of love to you & to all the brave people on here xx
popkit50
Member

Re: June 2016 starters?

Me too Terriannes90, day 6 of first T and this is the third day in a row I've only left my bed to go to the loo.
My appetite is all over the place & my tongue feels like it's twice the normal size. Water tastes vile & anything else does too to be honest. Even chocolate tastes horrid.
The bone pain is mainly in my thighs, hips & knees but has now started on my ankles.
Really hoping it eases off tomorrow. I don't have an appointment with my onc until mid September (between 5th & 6th cycle), but think I will call chemo ward in the morning to see if I need to bring that forward. I know I need the T as my lymph nodes were affected and they couldn't take them out before as I was still recovering from mastectomy/recon. A nurse friend said today they need to blast them with T before they remove them so that there's little risk of the cancer going elsewhere.

Belle - been meaning to say - "thanks" for reminding me about candy crush; completely hooked again! 😘😜
Terriannes90
Member

Re: June 2016 starters?

Hi millsamummy
Reading your post sounds like me writing it I feel exactly the same. I'm on day 5 of 1st tax and can honestly say this is the worst I have ever felt! The aches & pains are really bad, also such terrible indigestion & stomach cramps and as for bad mouth!!!! I too think I have thrush but everything I eat is horrible not one thing has a nice taste which is so unfair as I love my food. Going to try daktarin for mouth thrush & thinking of taking a good dose of night nurse tonight - got nothing to loose just want to feel better 😰
haz25a
Member

Re: June 2016 starters?

Hi Belle,

No apology necessary, understand that short replies mean people are either not feeling too good or busy.

Sorry to hear you're suffering after fourth chemo Smiley Sad although glad you're back is better and that you managed to enjoy your grandaughter's birthday.

I had third TC yesterday, so far nothing major to report (waiting in trepidation, who knows what each different cycle will bring), hot, red steriod face and chest but more worringly night before chemo my feet became really red, dry skin and tingling, burning sensation. Showed them to the nurses giving me my chemo who gave me a small tube of Diprobase and told me to keep an eye on it . Also tingling, numb sensation in fingertips. If it doesn't improve over the weekend I will phone helpline on on Monday.

Hope you feel better over the weekend.

 

P.S. Forgot my take my miso soup before chemo and was also supposed to try heat pad at hospital but there were none left! Anyway, got cannula in on second attempt. Smiley Happy

Hazel. x

Belle
Member

Re: June 2016 starters?

Thanks Charissecarson,

Top tip about the heat pad - I've done that throughout and I think it's one of the reasons my veins aren't even worse. As for the discolouration, it started blueish/purple and is now fading to greeny yellow and while it is along the vein it has spread into the surrounding tissues so fairly certain it is a bruise. I do have that vein darkening too. It's all so lovely, isn't it?!

My next is the 31st so a week after you. That'll be my penultimate. The end is almost in sight!

B x
Charissecarson
Member

Re: June 2016 starters?

Hi belle
I have a different chemo nurse each time I go and my last one told me that vein darkening is something that chemo causes so I wonder if your colour along the vein was that instead of an actual bruise. My veins have been slightly better this time than last and I think it might be because I kept a heat Pad on my arm before and throughout the chemo being administered, don't know if you've tried that?! My next session is next Wed, 24th.

C x
Belle
Member

Re: June 2016 starters?

Hi Charissecarson,

The bruising is just along one of the veins and it is fading now. I think it was probably the cause of the acute swelling I had last Saturday. I still have full movement and it's less tender now but still sore over my hand and lower forearm. I'd jump at having a PICC if it were an option, but sadly it isn't - I'm allergic to the dressings they use so I have to keep my veins going - eek!

When's your next dose?

B x
Belle
Member

Re: June 2016 starters?

Hi Hazel,

 

Sorry for the tardy reply.  My fourth FEC has really poleaxed me.  I can't quite believe the difference the culmative fatigue has made this time.  I had a rough start with my back and then veins but initially thought all was going well.  But now, I'm back to where I'd normally be on about day 4 or 5 and I'm actually day 10 😞  

 

However, it's been a small price to pay as my granddaughter's birthday was lovely.  I managed two hours on the sofa in the centre of the action before I had to retire to bed.  But it was so worth it.

 

My back is much better.  Off the diazepam and painkillers and managing to do the exercises occasionally!  Thank you for asking.

 

Hope you manage ok with this next dose.

 

B x

Millasmummy
Member

Re: June 2016 starters?

Hi ladies, I just thought I'd write an update after my first Tax who is definitely not a friend of mine :(. The aches and pains lasted until day 8, I took Ibuprofen and paracetamol as advised by chemo nurse, someone mentioned to avoid ibuprofen Im just wondering why?

Also my mouth has been affected too, much more than it was with FEC, I don't know what's going on with it but I've lost all taste and enjoyment of food it's so depressing, I wonder whether I have oral thrush but I don't have any white spots, mouth feels a bit rough but not sore as such. I'm using the mouth wash but it doesn't seem to help.

I am really not looking forward to the second T, and wonder if my onc will reduce my dose, I will see him next Friday so will ask.

How is everyone else feeling after their first T? I must say I do truly feel poisoned with this one, at least we can see the chemo finishing line xxx
On a diversion
Member

Re: June 2016 starters?

Hi Popkit and Terriannes,

 

So sorry you are going through this too! I am one if the May starters and have had two Taxotere (docetaxol) and Herceptin. The first was the full dose, the second 90%. Both times my back, leg and knee pain started being really bad from day 3 for about a week. I am now on day 12 of the second one and still have leg pain. Having said that my consultant says my body is particularly sensitive to the chemo so hopefully it won't cause you pain for as long as that. I struggled on FEC too.

 

My specialist nurse said most people have the bad pains from days 3 to 7. In consultation with her I have tried different combinations of pain relief but have found oromorph and paracetemol (always take your temperature first) to be most effective. I was told to avoid ibuprofen and diclofenic. 

 

Popkit, I haven't lost my nails or developed cracked skin. Not everyone does. I have Opi nail strengthener on my nails which I top up once a week so maybe that's helping. My head hair has started growing but I have lost my eyelashes and eyebrows! 

 

As as for the constant hot flushes mine seem to have settled a bit during the last week so maybe yours will too.

Take care xx

 

 

 

Terriannes90
Member

Re: June 2016 starters?

Hi popkit I too am being hit by the bus!! What a shock!! Had t on Tuesday & herceptin on Wednesday. Felt fine until yesterday now it's really kicked in. Can anyone give any advice, have taken Claritin & paracetamol is there anything else to help?? Thank you x
popkit50
Member

Re: June 2016 starters?

Hi Bagpus

 

Well after a positive start on the T today has been a bit of a shocker. Three days in and I have now been 'hit by the bus'. It's mainly my legs and back that are aching but big time. My knees feel about 100 years old. I've been dosing myself with paracetamol and diclofenac this afternoon and hoping I won't need anything stronger. 

 

Is there anyone ahead of us on T that can remind me how long this particular side effect lasts for?

 

I too am not looking forward to nail loss or cracked skin (a symptom a friend of mine had with T). 

 

My chemo mouth seems to be the same as it was with FEC and my appetite is much the same too. 

 

Well done for perservering with the cold cap and glad the miso did the trick for your veins. 

 

I just wish that the hot flushes ,which are almost constant would stop even for a bit, so I could get a decent rest. 

 

Night all - xx

 

 

bagpus
Member

Re: June 2016 starters?

Hi all,

 

Just popping in with a quick update since my first T. Fatigue is definitely a lot worse for me than FEC, barely getting off the sofa and have crawled back to bed a couple of times as I need the space to 'thrash about' and get comfy. Have also lost my appetite a bit, though think this might just be down to tiredness.

 

On the plus side, the miso and waterlogging did the trick and they found a vein first time! They almost wouldn't let me cold cap as so much hair had gone on top, but they put a surgical hat thing on me and it actually was less painful than last time, so hopefully I can cope with another 2. Just out of bloody-mindedness if nothing else!

 

I also think the chemo-mouth might be a bit better than it was with FEC.

 

Just waiting to see what aches and pains kick in - like someone else said, it's like waiting to be hit by a bus! Also not looking forward to the horrors of nail loss, hoping I can get away without that one!

 

Right, crawling back to my hovel now!

 

x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Charissecarson,

just popped over from the May thread, having found out that you, like Belle and myself are on FEC all the way through. It is a tough one!

Initially I did not want a PICC either, so completely understand where you are coming from. However post FEC number 4 there was no choice. The vein had completely burnt out. Administration of the chemo through 4th treatment was so very painful and took over 3 hours instead of the usual 90 minutes.

So a PICC was put in for the last two treatments - and......I am so very glad I had to have it in. No more struggles re bloods, chemo went like a dream and I can very carefully start working on trying to support the healing of the vein. No more fear of it getting too painful, get hot or start to swell. After all - we need them when it is all done! Also having to attend A&E for some challenges - administration of relevant drugs, contrast fluids, etc - no problems at all. That visit would have been intolerable, if I would not have had the PICC.

If I may - I would suggest to have it put in, as soon as you can and not wait to find out whether you have to have it, because your veins cannot cope anymore. Unfortunately PICC line insertion becomes more challenging the worse our veins get. Be kind to yourself and your veins. Much to my surprise it is not causing any issues to my normal working lifestyle. I wish I had it put in from the outset, to be honest. My fault, I thought I might manage without...

Hugs

Sue xxx

RosieFlower
Member

Re: June 2016 starters?

Hi C.

 

Finished FEC over 3 weeks ago and had one long hardened vein from wrist to elbow, and in the past 2 days noticed another one drifting off to the left. Emailed the nurse who is doing her PhD in this subject asking was it normal to get further vein damage, as expected that to decrease as time went on and not progress.

 

This is her answer - Re the hardening of the vein I wouldn’t be too concerned about it seeming worse –sometimes that can happen that it gets a little worse before it gets better as long as there is no signs of infection with redness, heat or swelling I would continue with the hirudoid and it will improve in time but this may take weeks or evens months.

 

Hope that helps

Rosie

x

Charissecarson
Member

Re: June 2016 starters?

Yes Belle I'm the same as you to be honest. Across my wrist, alone the top and underneath of my arm to my elbow. It feels likes it's bruised to touch and hurts to put my arm out straight. I'm just using a heat bag and stress ball. I don't actually have any bruise colouring though?! 🤔 I'm desperately trying to get to the end without having to have a picc line.

C x
haz25a
Member

Re: June 2016 starters?

Hi Belle,

This nurse "knows best", there is honestly no point in even trying to talk to her about it although thanks for the link.She's just "one of those people" i.e. a bit of an a******e . Lol! There's always one! After tomorrow I've only got one to go. I see your point about sometimes having to use surgery arm but in my case they can install a picc, even if it's just for one treatment. I'll make a lot of noise, I'm good at that. Lol! Apparently I move to a different Onc for radiotherapy but she proudly informed me that she is also involved in the radiotherapy side of things,Great, just my luck. My counsellor at the Unit is also a radiotherapy nurse so she knows all about rads so I can check things with her.

How are you doing Belle? Is your back any better?

 

Have a lovely day with your Grandaughter tomorrow.

Hazel. x

Belle
Member

Re: June 2016 starters?

Hi Hazel,

I know that sometimes it is necessary to use the surgery arm as when there is no choice (clearance one side, SNB the other for example) but there is definitely evidence that using it increases our risk of lymphodema. If your not so lovely head chemo nurse mentions it again quote the National Cancer Institute and refer her to here: http://www.breastcancer.org/treatment/lymphedema/risk_factors It's an American site but one of the BCC nurses told me it's the go to site for nhs and a pharmacist friend of mine recently referred her whole department there.

It makes the whole thing even harder when you know there is incontrovertible evidence disputed by caregivers. Hey ho.

Hope all goes well for you tomorrow.

Rosie - how annoying! It's a bit like being all dressed up and nowhere to go! Only not. Still, at least you'll get to enjoy your son's birthday. We're celebrating my granddaughter's first birthday tomorrow which I am beside myself with excitement about! Especially as it very nearly got cancelled as my daughter's got impetigo and I'm immunosuppressed ... But the chemo team gave me the go ahead once I went through all the details with them and promised not to touch her. She'll have been treated for three days by the time I see her so is unlikely to be contagious by then.

Hope all is going well for everyone else.

B x
haz25a
Member

Re: June 2016 starters?

Tinky, Bagpus & Popkit - Hope you are all doing ok after your first "T".

 

Rosieflower - Oh no! What a shame after taking your steriods that your treatment has been postponed. I get my bloods on a Wednesday, chemo on a Friday. My nuets went down to 0.2 last week, I half expected a phone call yesterday or today to tell me my chemo had been postponed, I was secretly hoping it would be just to get back to full strength. They did say that sometimes they do another blood test on the Friday morning if the one on Wednesday wasn't right. I will be really p****d  off if I turn up tomorrow and my chemo has been cancelled and nobody told me as I've had two doses of dexamethasone now. Nobody has mentioned liver enyzmes to me, I only see WBC, Haemoglobin and Platets and overal nuets in my wee red chemo book. Must ask the lovely nurses at the day unit tomorrow.

 

I don't get to see my Onc before treatments, pity as he is lovely.My chemo unit is extremely busy and you only get to see Onc before treatment and then if you have any problems. I get to see the Head chemo nurse who is "not so lovely" and started banging on again yesterday about using my surgery arm for chemo. Aaargh! She said "there is no evidence that using your surgery arm causes lymphodema, we don't know what cause it!" I told her I had discussed it with my Breast Surgeon and she said no and that I had also discussed it with Onc who said that was fine with him, they wouldn't make me do anything I didn't want to, so that shut her up,well about that subject anyway. She still managed to ramble on about other things which didn't make me happy. She doesn't half like the sound of her own voice, she is a classic example of "give some people a bit of authority and it goes straight to their head".

 

Hope everyone else is doing ok.

 

Aaargh! I dropped my laptop the other day and now my space bar, numbers 2, and 0 aren't working properly. This took about 20 mins to write.

 

Off to change the bed, the last of my chores for this week and hopefully get some sleep before tomorrow.

 

Best Wishes.

 

Hazel.x

RosieFlower
Member

Re: June 2016 starters?

Hi Belle and Popkit50

Well taken my dex, and clarity and about to mix my Miso, and got phonecall at 5.30 to say tomorrow T is off!! They hadn't noticed that one of my liver enzymes had creeped from 33 to 290 - and only the pharmacist picked it up this morning as he was sorting my take home drugs for tomorrow! Drat and double drat. Not that i want it, but don't want to delay the time this is taking out of my life!


They said chemo can cause liver damage, so blood test on monday and appointment Tues, and fingers crossed its come down so that i can be squezzed into the very busy chemo unit next week.

Read the side effects of the injection you give 24 hrs post chemo to boost WBC, and an uncommon side effect of that can be raised ALT liver enzyme, so hoping that's it, and also hoping i don't have to have the full Tax now on first giving and that they will reduce dose slightly.

Anyway its my son's 14th birthday Monday so now can do nice things with him and family instead of being hit by bus!! Every cloud and all that.......

Belle - My ONC told me that you have FEC-T if lymph glands involved and the T part is for the lymph bit.

I hope everyone else is doing well.
Rosie
xx
Belle
Member

Re: June 2016 starters?

Excellent Charissecarson, I was beginning to think it was just me! I think it's often down to lymph node involvement but it probably also depends on unit preference too. How are your veins holding up? I've got bruising along one of them across my wrist and they're tender all the way from the back of my hand to my elbow but I think they're still working!

B x
Charissecarson
Member

Re: June 2016 starters?

Yes me Belle. I wonder why and how they decide which type to give?!? X
Belle
Member

Re: June 2016 starters?

Morning all,

 

Glad to see so far so good on the Tax front Popkit.  Hope it continues that way for you and for everyone.  

 

Is anyone else staying on FEC all the way? 

 

B x

RosieFlower
Member

Re: June 2016 starters?

Morning Popkit50

 

I hope you've had a good night, and glad to see so far so good for you.

Its the waiting for something to kick in that's the worse, and when is this bus gonna come that's gonna hit us for 6!!

Taken my morning Dex and clarityn. Have my miso soup at the ready for tonight - oh it's all go!!

 

I hope you have a good day, and thanks for letting me know how its gone so far.

 

Rosie

xxxx

popkit50
Member

Re: June 2016 starters?

Hi Rosie

 

I had my first T (Docetaxel) yesterday and despite having increased steroids with it, so far I am feeling a lot better than I did after the FEC. Less dizzy and less nausea. I wonder if it is the miso which has helped! I wasn't given any antihistimine with my T which I know some people are, but I took the advice from an earlier post (sorry I can't remember who posted it) about Claritin (Loratidine) and took one yesterday and one today so that may be helping too. 

 

Had quite a nice day all in all really topped off by someone estimating my age at 16 years younger that I really am (she guessed 35 and I'm 51 in a couple of weeks!) She obviously needs a trip to Specsavers but it did make me feel good. She was a complete stranger who approached me in shop after noticing my picc line dressing and chemo hair scarf. What a lovely young woman she was. She told me she'd had breast cancer herself last year and gave me loads of positive advice. Also told me about a blog she had written, I will check it out and if it's any good will pop a link to it on here. 

 

Good luck with your first T Rosie. I hope you have as 'good' an experience as mine in that it wasn't as bad as I had been expecting after FEC. 

 

Night all! xx

RosieFlower
Member

Re: June 2016 starters?

Hi Bagpuss

 

Hope you have a good night.

 

I'm having my first T Friday, and not looking forward to it. Though FEC has caused hardening of veins down my inner arm, almost better the devil you know, than the devil you don't sometimes!

Wishing you well

 

Rosie

x

bagpus
Member

Re: June 2016 starters?

Hi Tinky,

 

My onc had warned me that the changes to the tumour after FEC would be very small, because the T and herceptin are the 'big guns', so don't worry about that. He was very surprised that mine had responded as well as they had, he hadn't expected them to. I think it's the combined effect of the drugs that makes the big difference.

 

Had first T today and feeling a bit knackered after 2 long days at the hospital, but glad to be into the 'home straight'.

 

I had the injections with FEC as well as T, I really hate them. Particualrly as I was advised to have them at the end of the day so the majority of the aches they cause can happen overnight. Really not a nice thing to look forward to at the end of an already crappy day! I have some emla cream in stock so I might be a wimp and use that so at least I don't have to feel them!

 

xxx

 

 

Tinky
Member

Re: June 2016 starters?

Hi Bagpus

 

Hope yesterday went OK for you.  I am the same as you - chemo pre-op & happy to be 4 done now.  Had first T & Herceptin both on Monday.  Unfortunately my ultrasound didn't show any difference in the tumour, which is a bummer after x3 FEC!  However, Oncologist tells me the best treatment for me is the Herceptin.  Had vein troubles for the first time on Monday & they had to start again in a different place (which there are not many options for now) so will be going back to all the great tips on here to get them in best condition for next time.

 

Now have the injections to boost white cells, which can cause joint pain as well as the chemo regime.  However plenty of pain relief explained & I have a back up (Gabapentin) if needed.

 

Yes, low mood was worse after no.3 & I felt like leaving work, imagined people were excluding me etc, which is so not me - definitely the drugs!

 

Am booked for Look Good Feel Better next week - thanks Belle for spurring me on to book it & my centre still had spaces for August, so looking forward to that.

 

Sending hugs

 

Linda 

 

 

bagpus
Member

Re: June 2016 starters?

HI Marije,

 

That's useful to know - the more I can reassure myself that it's the 'drugs' and not 'me' causing it, the better!

 

I also had a look at my steriods info this morning (I'm taking the pre-T ones) and noticed that drepressive feelings are a side effect of them.

 

It's like everything is joining forces to make us less able to mentally cope with the physical side effects!

 

Currently getting to the end of hour 4 of my 6 hour wait in the chemo unit to make sure I don't get a reaction to my first herceptin jab. Very, very, very thankful that the hospital wifii is working!!!

 

xxx

Marije
Member

Re: June 2016 starters?

Just a quick one from me, as I'm about to dash off to the Fringe with my 5-yr old (I wonder who'll be most shattered later today, haha). 

My oncologist tokd me the mood changes and depression is due to the chemo effects on your overies, and therefore all the hormones changing in your body.... Makes sense.. (Horrible idea though!). 

Speak later.

Good luck to everybody...

xxx

Terriannes90
Member

Re: June 2016 starters?

Hello everyone. Well went for pre-chemo blood test today & they found a vein no problem!! Last time they struggled & I was bruised from elbow to wrist 🤕 So fingers crossed for a vein tomorrow & no screaming the place down again. Having 1st tax tomorrow then 1st herceptin on Wednesday. Not looking forward to it but after tomorrow it'll be 4 down 2 to go. Have felt very tearful last couple of days & will be glad when tomorrow is here. Have read all your side effects about tax & am very apprehensive but compared to some of you I haven't suffered with fec as bad so here's hoping!! Wondering if any of you meet up if you live near each other as how nice would it be to talk to someone who really understands what you're going through! I am wishing everyone good luck, keep going & loads of love xx
Belle
Member

Re: June 2016 starters?

Hi Bagpus,

Far from being unpopular, it's really encouraging to hear you this about the half way point! Thank you 🙂

B x
bagpus
Member

Re: June 2016 starters?

Hi all,

 

Completely agree about the hideous depression post chemo. It's by far my worse side effect so far, though I have been really lucky not to have too many with FEC. Remains to be seen what happens with T! I know in my head that it's just the drugs making me feel low and that it'll only be really bad for a few days, but it's really difficult to 'feel' what's in your head.

 

On the half way point thing, I might be really unpopular to say this, but I've been really happy to have reached it. I think perhaps the difference is that my chemo is pre-op, so I've actually been able to see the difference the drugs are making to my tumours, so that's been a real boost. I know most of you are post-op (sounds a bit like I'm talking about gender reassignment!! Smiley Mad) and not able to see the benefit of these drugs, please believe me that they are amazing things and truly kick cancer-ass!

 

Found my miso in Waitrose too. Really not looking forward to it, particularly double dose. But as they couldn't even do my blood test from my 'chemo-arm' today, I think I'll have to give it a go!

 

On the muscle cramp subject, someone told me that you can suffer from magnesium deficiency from drinking a lot of water and to eat bananas as they are high in it. I haven't checked this with any medical source though, so it may be rubbish. Anyway, I wondered whether the same might be true of potassium, a lack of which can cause cramps. It's just an idea, but as bananas are also a good source of potassium, it might be worth trying to have one a day to see if it helps. It can't do any harm anyway.

 

Belle - I hope your back is feeling better soon, what a nightmare to have that on top of all the chemo-crap. Amazing daughter-in-law though, tell her from me that she's a star!

 

Popkit50 - I'm sorry you've had such a rough time of it and hope you're feeling a bit better (nothing like a cream tea to help boost the morale!). I'll keep my fingers crossed that you're OK in time for your T.

 

xxx

 

 

popkit50
Member

Re: June 2016 starters?

My local Sainsburys stock it too!
Belle
Member

Re: June 2016 starters?

Fantastic, Rosie, thanks! I'll be checking out a bigger Waitrose before my next round 😄

B x
RosieFlower
Member

Re: June 2016 starters?

Hi Bel

Itsu Miso soup is in Waitrose - £2 for 3 servings - that's the one I bought ready for T on Friday!
xx
Belle
Member

Re: June 2016 starters?

That's really interesting Popkit, thank you! I'll have to see if I can track down any of the Itsu brand to compare. I really wish a PICC line were an option for me but sadly it isn't - I haven't yet found a dressing I'm not allergic to so they won't risk putting one in. And I two more FECs to go. I thought I was getting phlebitis last night as my hand & arm were swollen and my veins were red and angry but thankfully all settled down fairly quickly and today it's much calmer.

B x
popkit50
Member

Re: June 2016 starters?

For info: The Itsu miso paste is instant in that all you have to do is add hot water but it is a paste and very similar to any tubs of refrigerated miso paste I have bought in the past from Asian food stores. I really like the Itsu one and buy it regularly as it's good for staving off hunger when I'm working; I'm a florist and haven't always got the time to stop for food. I have bought the Clearspring instant miso sachets before and found them disgusting, but I've never tried the paste they sell.

 

Also for anyone considering a PICC line if their veins are troublesome, I can't pretend it wasn't painful to get it inserted but it was the best decision I've made so far on this horrid chemo journey. Now the highlight of my week is the trip to the clinic to get the line flushed and dressed! All of the IV nurses at the clinic that I've met so far have been really lovely and always willing to have a little chat about how things are going and offer advice.

 

Only two days to go now until the first of my T but I am technically halfway through chemo and like Belle feel depressed rather than happy about this. I've got the same to go through all over again, neither here nor there feeling. Really hoping the side effects from T aren't as bad as they have been from FEC and I seem to have got off pretty lightly compared to some of you on here apart from the two emergency admissions to hospital. 

 

Hugs to everyone xx

 

 

Belle
Member

Re: June 2016 starters?

Blimey, Hazel, what have I started?! Smiley LOL

 

Right, the original site I found this on (http://www.hystersisters.com/vb2/showthread.php?t=357436) suggests this:

'Here's what I found worked. The night before chemo, drink a ton of water. If you get up to pee in the middle of the night, drink more water. 

Also, have a big bowl or double-size mug bowl of strong miso soup. The high salt content will help hold the water in your body. You can buy miso paste (usually refrigerated, but some types are in packets on a shelf -- don't buy "instant" or things in a box, just get the paste) and add it to hot water, and that's all you need to do. It tastes good as well.

The morning of chemo, have some more water and more miso soup. The more water you can get in you and the more salt, the better you'll find that your veins hold up. When I started doing this (after that six-needle-sticks episode, which of course made me cry), I never had another problem."

 

However, I bought the Clearspring Organice Miso Paste from Waitrose £2.35 for four sachets (only place I could find it!) and only drank one sachet the night before chemo and on the morning as I hadn't read the advice about doubling up.  I may double up for future attempts as my veins are shocking at the moment: sore, swollen and painful.  I don't know why the powder is sniffed at in the original post and so long as it's got salt in it I would think that it would work as well.

 

Let us know how you get on!

 

B x

haz25a
Member

Re: June 2016 starters?

RosieFlower,

I also bought some Miso soup in Morrisons today. 65p for one sachet!

Belle- How many sachets do you need to drink/eat and is it just the day before your chemo? See what you've started Belle. Lol!

Hazel. x
RosieFlower
Member

Re: June 2016 starters?

Thanks for cramp info Terriannes90.

 

Been suffering horrendous early morning cramp especially since FEC 2 , and didn't know it was a side effect - so thanks.

X

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Terriannes90

So glad you joined this thread and find it helpful and supportive.

As your veins are som important, not only for the chemo - but also for the future - you may wish to discuss having a PICC line installed to make things easier for you. I had mind put in for FEC treatment 5 and 6, as my veins could not take the chemo any more.

You might also find this link to another thread, Belle started, very helpful -  https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...

Hope they improve!

Hugs

Sue xxx

Terriannes90
Member

Re: June 2016 starters?

Hello everyone. Love reading all your posts I have picked up loads of tips.... Asked oncologist about Claritin ready for t on 16th & he recommended it but prob wouldn't if I hadn't read about it on here! Also didn't realise my achy arm was my veins but thanks to you lot I've discovered my veins have corded & shrunk so took your tips, got a stress ball & massage all the time, not sure about miso soup as struggling with taste & textures really badly.
Belle you mentioned achy legs..... mine are the same but told it's a side effect - great!! Also get night cramps in calfs (another side effect!) told to drink tonic water yuk!!!! Rather have cramps it is so disgusting.
Also seen that most are suffering - amongst everything else! - from depression & feeling down which I too have from about day 4 until about day 12 which is unbearable but it does get better. Good luck & much love to everyone xx
RosieFlower
Member

Re: June 2016 starters?

Hi Belle and Popkit50

Just been to Waitrose and bought the Itsu Miso soup you recommended Popkit50 - still looking at it with baitted breath!! lol

 

Its on amazon for £11 but bought same in Waitrose for £2 - just thought i'd let others know. £2 doesn't seem so bad if its vile and you can't drink, but £11 does!!

 

Hope everyone has a good weekend

xx

popkit50
Member

Re: June 2016 starters?

Thank you Hazel, Belle, Rosie and Sue for your kind words and support. xxx

haz25a
Member

Re: June 2016 starters?

Oh Belle, what a shame about your back. 😞 that's all you need. I also have a bad back and it has been threatening to "go" quite a bit recently. I've thought "No, please, I can't put my back out right now, I need to do chemo" so I really sympathise with you. That's so lovely of your "nearly daughter-in-law".

Popkit, sounds like you've been having a really rough time of it. Hugs.

RosieFlower, I think when you're feeling ill physically it drags you down mentally. I know that is certainly the case for me anyway.

Sue, I hope you're not feeling not bad after chemo yesterday.

Ladies, I hope you all have a better weekend.

Hazel. x