June 2016 starters?

[netti37]

Well, I'm finally home. White blood cells made a steady increase and I'm feeling better. Still got the odd aches and tender stomach, so not clear from pain relief. Got antibiotics and lots of meds still to keep taking. Day 8 now and hoping by b the weekend I'll feel like me again. Seeing onc on Monday to review treatment?? Hope all other ladies' who've had a bashing from T are on the mend and doing well. Thanks for messages. Xx

[Charissecarson]

Thanks sue, yep same regime and 5 down 1 to go. You must be about to have your last one now are you as you're a bit ahead of us? What are your future treatment plans? X

[Belle]

Thanks Sue,

Not sure what's gone on with the pm system as we've been happily messaging up till now! But I've messaged my details to Charissecarson, so hopefully we'll get something sorted.

And yes, you're right, FEC is not being my friend. I get about three good hours a day now. And this is my good week - yay! Number 5 on Thursday.

Sorry to hear of those in hospital. Hope you're all discharged soon.

B x

[Sue H-S]

Hi Charissecarson.

I believe you are going through the same type of chemo as Belle and myself - FEC all the way - not an easy journey! Number 4 and 5 have been very challenging and I hope you are doing ok.

To be able to pm Belle you would need to enable your private messaging facility. You might find this link of help to set it up -

https://forum.breastcancercare.org.uk/t5/Struggling-to-get-started/Private-groups-and-private-messag...

Hugs

Sue xx

[Charissecarson]

Hi Belle, the private message thing wont let me send you a message or reply???....

[popkit50]

Netti37 & Anon16 so sorry to hear about you being in hospital. Bad enough at the best of times but it must be even harder over bank holiday. This T is a right b*****d without a doubt. Wishing you speedy recovery & hope you make it home very soon.
Marije - best of luck avoiding the stomach bug. Keep yourself well hydrated. Must be so hard with little ones to look after as well.
I'm now day 14 post first T and still not feeling right. I feel lucky that I didn't get the bad stomach but oh those leg pains....they still ache and my heels are still sore. I can just about get to the end of my road & then I'm desperate to sit down.
Seeing surgeon in the morning to discuss date for lymph node removal. Hope they give me time to recover after final chemo as I hadn't recovered from mastectomy before chemo started. Then I've got my look good feel better session which I'm quite excited about.
Will be thinking of those of you in hospital tonight and those struggling with side effects - I hope you all manage to get a good night's rest.
Big hugs to all xxxx

[bagpus]

My friend has just sent the following through to give me some inspiration after I told her about my rapidly diminishing eyebrows: http://justsomething.co/28-hilarious-eyebrow-fails/

I definitely think that tatooing cats over my eyes might be the way to go!

[bagpus]

Best wishes to you both in hospital - you're in the best place to get better as soon as you can.

Marije - I'll keep my fingers crossed that you avoid the stomach bug. Might be worth chatting to your chemo nurse just to find out what to do if you do catch it?

xxx

[Marije]

Sorry to hear you're in hospital. Sending you all lots of love and strenght..xxx

[Terriannes90]

So sorry to hear you ladies are in hospital. Sending you lots of love & get better soon. Thinking of you xxxx

[netti37]

Omg Rosie I can't believe it. My bloods came back with really low white blood count..0.1!
My stomach got really bad. My chemo nurse said its defo one of the side effects. Im on iv pencilllin and antibiotics and they will try and boost my white cells. Best of luck honey, so sorry to hear your in this position too. I've been told I will stay in overnight and see the onc tomorrow to discuss next treatment. Xx

[Anon16]

Oh no Netti I've been in hospital all day too after my first tax and the stomach pains are the worst. Awaiting bloods to come back now - are they giving you anything for it?? Hope your ok xx

[RosieFlower]

Oh netti37 , am so sorry to hear you're in hospital - but as you say the best place to be, and maybe they can give you stronger painkillers too . Sending hugs xxx

[netti37]

T has got me. I've been admitted. My stomach during the night was so painful. Had the tax trots but nothing got better. My temp it 37.8 this morning, so here I am. I am nuerphenic, so in a side room. What a way to spend a sunny bank holiday. But I'm in the right place now, and hopefully these T side effects will soon disappear.. I am dreading the next one already, but seeing onc tomorrow. I can't go through this again. X

[Marije]

Great, the whole family has now come down with a tummy bug! All the kids have played together, so it's only a matter of time... I believe I am now at my 'low point' of immune system, so what would I do if I get the tummy bug? 

'Avoidence' is impossible.. We can wash all the hands we want, I am still the main carer of my kids and change nappies, receive kisses.. 

[RosieFlower]

Well what a shocker T has been. Like you netti37 am begining to feel i must have sailed through FEC (even though had s/e's) . Had first T 4 days ago on thursday, was manic on thursday and friday due to steriods, but by god did the baseball bats come out yesterday! Feel tender and achey from forehead to toes. My double chin feels like its quadrupled as so tender to touch, and throat and mouth very sore. Tongue feels burnt and huge.

Today I feel like a hundred as trying to walk is so painful - am going so slowly! Getting tingling in some fingers and soles of feet - guessing its the neuropathy pain you can get. Even trying to punch out painkillers from packet is difficult as fingernails already tender!! Have tried brufen, paracetamol and co-codamol over the past few days - not one has taken the aching away but guess makes it more bearable.

Sending gentle hugs to all and hope we all feel better soon - at least the sun's shinning

Rosie

xxx

[bagpus]

Terriannes90 - I'm on day 12 and starting to notice that every now and then I get sort of a 'hot flush' on my hands and feet. Only maybe once or twice a day. Not itchy though. I wonder if this is because I'm still taking claritin for the aches and pains? Are you taking an antihistimine?

netti37 & Anon16 - I'd definitely phone up about the stomach pain. I would imagine that this is one of the symptoms they could prescribe something to help with, so it's worth a go. My stomach was much more upset by T than FEC. I'd go with a mild laxative though, as I had a sennacot (just one) and then spent a few days swinging from one extreme to another, if you see what I mean!

Marije - I'm sure my eyes aren't as good as they were pre-chemo, but I think for me it's just tiredness as I don't notice problems focussing as much by the end of week 3. I'm going to book an eye test when it's all over though just to be sure.

xxx

[Terriannes90]

I'm on day 14 of 1st tax & herceptin and can honestly say I feel more or less back to normal. It's a very rough ride & still have a sore mouth, bad taste, few aches & tingly heels & fingers. I too had really bad stomach cramps but they seemed to disappear on day 9. As for indigestion I couldn't even drink water without getting it. Phoned hospital & they gave me omaprozal (2 twice a day) and now I don't even need gaviscon every 2 mins! They also gave me gelclair for sore mouth which has really helped.
One thing though is I have the most itchy fingers feels like put hand in stinging nettles! Anyone else had this?
Love to all x

[netti37]

I thought I was feeling better this morning but as the day has gone on I've got worse again. I can't believe how much I sailed through fec. This has really hit me. My mouth is shocking too. I've literally fallen apart since Tues. I'm going to take a laxative tonight, to try and sort my stomach out. It feels all swollen and sore. Co codomol causes constipation.. Are you taking that too. Day 5 and counting, it won't last too much longer, hopefully. Sending you hugs and hope you feel better soon. Xx

[Anon16]

I thought it was constipation as had that with fec but it's not just really cramping, like labour pains argh. Temp has been up and down but no fever. Pretty much slept for last three days. Feel really down Boohoo. Hope we are better tomorrow x

[netti37]

Rosie, I'm having stomach pains too. I thought I needed toilet but nothing. I'm putting down to all the meds. I've been too the loo a few times, so I'm not constipated, but my belly is hurting. I've also had really bad aches in my back and chest. Plus indigestion has started today and got pins and needles in finger tips. I hate this tax. What's your temp been like?? Have u been constipated or the other way. Xx hope your not too poorly xx

[Anon16]

Chronic stomach pains on tax - anyone else? Do I need to phone someone or wait out the se's??

[Marije]

Thanks Popkit,

I just felt my vision has been a bit more blurry in the distance and I can't 'shift' focus as quickly as I used to. 

Otherwise the eyes are fine, if only a bit more watery.

I had my eyes lasered a few years back, and I'm a bit unsettled about that change in vision!

Might phone ward tomorrow to check x

[popkit50]

Meant runny not funny 😳👀

[popkit50]

Hi Marije
Yes problems with eyesight are a common side effect of Docetaxel. Tearing (wet eyes) or blurred vision, if the latter you should contact your chemo nurse and probably arrange a sight test.
It can cause conjunctivitis too.
I hope you're ok - my eyes have been very funny but vision ok so far. I had two eye infections during the three cycles of FEC but so far ok on T.
XXX

[Marije]

Does anyone know if your sight can be effected by Docetaxel? 

[netti37]

Hi Rosie, thank you. I've been in bed all day, get out to have baths and loo. I knew it was going to be bad, but bloody hell!!! It's not been a good few days, I've been in tears with the pain. I feel, only a little, ok at the mo. Managed to eat a biscuit, but that's just so I can take my meds. Fingers crossed ladies we all start to pick up soon. Big hugs xxx

[Anon16]

Thank you, that's reassuring x

[bagpus]

Hi,

If it helps, I was really bad for 2 days then gradually got better. Was worse than fec, but I didn't get any delay before it hit me like some others have.

so if you're following the same pattern as me you're over the worse but have another 4 days or so before you really start to feel better.

Hope that helps x

[Anon16]

For some really really annoying reason I can't send Netti 37 a message so here it is (hope that's ok)

Omg exactly the same, I was rough with the first fec but ok with the second n third, this T has made me unwell. I've barely moved for two days, had to ship my daughter to nursery, sleeping loads, don't feel good at all. Worried reading the other posts from ladies saying it hit them after a few days eg is it going to get a lot worse??!! No mouth pain yet just awful taste. Hoping it's like having the first fec and once we know the side effects to expect the next few won't be as bad. Dreading the weekend with a clingy toddler (😔). Hope we are better tomorrow xx

[haz25a]

Popkit and Terriannes,

I'm just having a read through the threads and was debating whether or not to post to ask if anyone has had problems with their feet or hands?

I've had three TC chemo cycles and just before my third one last Friday I developed very red, sore soles of feet with some dry skin. The soles of my feet feel "burnt" and I have lost some sensation in my toes and the balls of my feet. It's quite sore when I walk. I also have some loss of sensation in the my fingertips, a "burning, pins and needles" type of feeling.

I showed the nurses my feet when I got my chemo last week, they gave me Diprobase (which hasn't really helped much, but keeps them hydrated) cream and told me to "keep an eye on them". As this hasn't improved in the last week I phoned my chemo unit helpline yesterday. I was told I may peripheral neuropathy and that it is a side effect of chemo. My fourth and last chemo may not go ahead or be reduced. My next appt is not until the 7th September when I get my bloods done before chemo on the 9th September.

I've been advised to avoid extreme temperatures (although I want to put my feet in iced water!). You might want to let your chemo team know about this.

Best wishes.

Hazel.x

[Terriannes90]

Hi popkit
Just to say I too have very sore heels! Another side effect to add to our list!! I also have sore tingly fingers so suppose it all goes together.
Lots of love & hugs
Terri 🐾

[popkit50]

So glad you other ladies on T at same stage as me (day 11) are beginning to feel better but I feel really sorry for you with the mouth sores etc. My mouth hasn't been too bad, no sores or ulcers, just coated & a tongue that feels a bit swollen. Taste is just beginning to return and I actually felt hungry today - my tummy rumbled!
However the bone/joint/muscle pain is still there in my legs and I'm finding it hard to walk 50 yards without feeling shattered. I've also got really sore skin on my heels which is making it hard to walk too. I feel like I need to plunge my feet into a bowl of ice. Which I am just about to do! Has anyone else had this? Wondering if it's palmar plantar syndrome.

I too am really looking forward to the day when I can enjoy a chilled glass of wine (or three) and a lovely meal out. It's my birthday next Friday & it should be the end of the "good" week so crossing my fingers I might feel up to going out.

Hope everyone has a lovely pain free weekend!

Big hugs to all x

[Terriannes90]

Hi all

Marije I feel exactly the same as you! Am on day 10 of first tax & can't believe how much better I am feeling today. The mouth thing is definitely the worst thing ever and haven't been able to eat properly for days - never again will I deprive myself of food when this is all over ( always dieting!) 🍔 BUT today I ate a toasted bacon sandwich (can't do bread for some reason - only toast!) and I was crying as I ate it because it tasted nice!!!! Although it's not just about the taste with me it's also the feel of food in my mouth - weird!!
Anyway today I have managed to shower & get ready, full make up & wig and visit my lovely sister. Am now sitting in her garden (factor 50 & in the shade!) enjoying being alive 😎
Much love to you all xx

[bagpus]

Hi Marije,

I'm sorry to hear your mouth is so sore again. Completely sympathise with the barely being able to talk - I had a couple of nasty ulcers in my throat this time around and my hubby kept getting grumpy that I only every replied to him in grunts, but it was so much less painful than opening my mouth!

I've got an ulcer spray to have a go with for the next round, I'll let you know if it's any good. I wonder if there's a limit on the number of mouth treatments you can use at one time?!

If it helps, remember that you've only got to do this twice more and it's all over. And I suspect that the side effects of the last treatment, while physically just as bad, might be easier to manage emotionally.

Take care xxx

[Marije]

Hi everyone,

Well done for getting your first T! 

And happy 1st birthday to your boy Bagpus 🙂

T has well and truly hit me now (day 7). Though funnily enough I braced myself for the bone and muscle aches, and those have been minor. It's the mouth!! My goodness, never thought I could have so much pain in my mouth. It is completely and utterly covered in sores and ulcers and it's like one gaping wound. I always thought I had a high pain threshold, but this is excruciating! Needless to say I was in hospital all day tomorrow, and there's talk about reducing the dose. Sent home with more mouthwashes and morphine! I can barely eat, talk or smile. I so so long forward to a time when my mouth is OK again and I can go OUT for dinner, and enjoy food and a glass of wine. It's amazing when you realise you take life's little pleasures out of things like sense and taste (and good health in general) 🙂 

I suppose if that's the lesson we learn from all of this, so be it..

I hope you're all well.

  X

[RosieFlower]

Thanks guys for your good wishes, well number 4 DONE (first T)!!

Well what a different experience that was for me - so much better than having the FEC. I hated the nurses sitting in front of me and injecting those 10 syringefuls into my hand, I didn't want to converse with them, look at them or anything, and never wanted to see then again (was given in a mobile unit, whereas the T is given in the day unit of the hospital).

Having the drip yesterday behind my chair allowed me to go into denial as to what was happening, which suited me great, and found i was happier and chattier to the nurses as they wandered by. I think the delay of one week made me feel i WANTED it , rather than pitching up to have it automatically at 3 weeks, which made me more positive in having it and want to get on with it and not drag the time out.

Face very flushed, and had to have wet fannel on face overnight to calm it down to try and allow me to sleep. The steriods have helped in these past 24 hours in achieving a tidier house, was up till 2.30am sorting rubbish and old clothes and up at 6 and now been cleaning kitchen - every cloud and all that.................!!

Wishing us all a sunny and bright day, and thanks again for all your support, tips and advice, coz that really does make this situation all the more bearable

Rosie

xxx

[bagpus]

Despite still recovering from the effects of T, I can safely say that I'm feeling 100% better today than this time last year - as our little boy has just turned 1 today!!

popkit50 - what a lovely day at the beach, brilliant idea!

[popkit50]

Hi Rosie
Will be thinking of you today & hoping all goes well.
I'm now day 10 post first T and bad side effects are beginning to wear off. They kicked in on day 4 - probably when steroids wore off. I ended up taking oromorph for the bone & joint pain and could only get out of bed to go to the loo.
I am still taking clarityn every day.
My mouth was quite sore but no ulcers just gross tongue and loss of taste buds. That seems to be getting better now.
Hot flushes were horrendous and still are. A real pain in this weather, but I was suffering with them before I was diagnosed.
I have been able to leave the house the last couple of days but felt whacked out afterwards. Just felt good to be outside though!
You may not find you are as bad on T as me - I did have very severe bone pain after the GCSF injections so I may be more susceptible to that. I really hope you have a smooth ride with it.
I am seeing my onc before next dose who has suggested reducing it.
Great tip about the nail varnish. Have raided my daughter's collection. The darker the better apparently.
Yesterday my youngest daughter (13) was saying she really wanted to go to the beach with me - so we lay on my bed with the windows wide open, a fan blowing on us and a YouTube video of beach noises. It was great! We both drifted off to the sound of waves lapping on a tropical beach after fantasising about lovely drinks and food being brought to us and what our beach shack might look like!

I hope everyone has as good a day as possible. Keep cool!

Xx

[Terriannes90]

Morning all. Well day 9 of first tax and starting to feel bit better. Have been given omaprozal instead of lansaprozol which seems to be helping my indigestion better & nurse gave me gelclair for mucositis which is brilliant! Although I still have no taste & everything is disgusting but managed a cup a soup yesterday which was ok. Was stressing about my weight gain but have lost 1/2 stone so now feel weak - can't win can we. Seem to have lost what strands of hair I had & eyebrows & eyelashes very sparse. Thank god for the wig & makeup eh!!
Anyone any advice about reduced dose next time or more steroids? Not sure what to do so your views would be great.
Well it looks like another hot one again today here in Romford so factor 50 at the ready.
Hope you all have as good a day as you can 💕 Terri x

[bagpus]

And don't forget to paint your nails in a 'solid' colour to protect them from UV light.

[bagpus]

Hi Rosie,

I'm glad they've got you sorted, how annoying to have a delay though.

I found that the first couple of days on T were hard, though I think a lot of that was due to having hot flushes, which possibly weren't caused by the T (by herceptin or zoladex implant?) but I think that the T did aggravate them. So lots of fluids and be prepared for a couple of rough nights, especially if this hot weather continues.

My taste was quite badly affected (and still is) and I have had quite a few mouth ulcers this time, so perhaps think about getting mild and smooth food in. I'm currently addicted to strawberry milkshakes, and I think that others find it good to have boiled sweets around. I asked my chemo nurse about the mouth ulcers and she said I should be rinsing with salted water 5 to 6 times a day, so I'm going to try to be more vigilant about that next time around.

You've got the claritin for the aches and pains, but I'd also see if they can send you home with pain killers. I was given co-codomal at the chemo session to bring home with me and have used it just a couple of times because the chemo appears to have aggravated an existing back problem.

I've found that the rest of the symptoms are very like FEC.

Hope that helps, good luck for tomorrow. x

[haz25a]

Hi Rosie,

Glad to hear your liver tests are ok.

I haven't had any FEC, four X TC for me so T right from the start so can't really compare.

Only advice I can give is T for some people can have a bit of a delayed effect, sometimes hitting you at it's worst around day 5 or 6, so if you feel ok for the first few days make the most of it. I thought I was getting off lightly after my third cycle of TC last Friday but it has hit me today in terms of fatigue.

On my last three cycles I have felt a lot better on my third week, so hoping for the same again. It's hard to say though as everyone is different. I did lose my tastebuds on all three cycles so far, from what I've read this seems to be more of an issue on T than the women who have had FEC, again, it's a hard one to call as it can be so individual.

Wishing you good luck and minimal side effects for tomorrow.

Hazel. x

[RosieFlower]

Hi guys.

Well after 3 blood tests in 8 days, first T will go ahead tomorrow but at a reduced dose of 75%. Am relieved to have reduced dose, but also thinking if liver isn't coping with clearing chemo, the side effects may hang around a little longer as liver is compromisd!

Any tips for the first few days after T? Have taken clarityn and dex today, trying to drink and attempt Miso later.

Hope everyone is okay

Rosie

xx

[popkit50]

And me! Nutribullet has made a fortune out of us. At least my daughter is using it for fruit smoothies. I keep buying kale to put in a smoothie then conveniently "forgetting" to put it in.
My son has just bought me a bag of maltesers, used to be my favourite, don't even want to look at them now. It was very thoughtful of him though.
The best drink I've found so far is a ginger & lemongrass cordial - which is probably good for anyone feeling nauseous too. Got it in Sainsburys.

Re: bone/joint pain on T
I spoke to GP today who said not to take ibuprofen or diclofenac if taking lansaprasole and that it was fine to take oromorph for the bone pain if that worked for me. It gave a couple of hours respite from the pain which meant I got a bit of rest.
Hopefully will be able to get up and move about a bit tomorrow.
Xx

[Terriannes90]

Oh how funny bagpus me too!! See at least we can have a laugh 😄😄 xx

[Alex2016]

Bagpus, I was like you too. I decided I was going to be as healthy as I could. I bought a Nutibullet and starting juicing, to ensure I had appropriate quantities of fruit and veg, making sure smoothies had things like kale and spinach and carrot etc and not just fruit. If I had to eat a spinach smoothie 7 days post FEC I'd throw up just looking at it lol.
I suppose we can only do what we can to get through.
Must try the strawberry milkshake powder. 😀

[Sue H-S]

Hi bagpus,

Just popped across from the May thread.

Great to hear you 'sailed' through FEC. I should say though - that staying on FEC throughout is definitely not an easy ride. The cumulative fatigue is something to behold - 9 days bed and sofa bound! Sleeping patterns have completely dissappeared, even in the 'better' time. And when lucky enough to get more than 5 hours, it does not feel as if I had slept. Constant tiredness, no energy at all. And I was fit before this! Aargh!

The mouth is just as bad as on T it appears. I managed to beat the mucositis again with antibiotics, but am left with a tounge, which feels as if it has been scalded with very hot coffee. No taste - such fun cooking - NOT - everything is over salted and over spiced!  And I can still not taste it. Hey ho - soon over! Certainly agree with the taste of water - FOUL! 

I seem to be lucky with my skin - still not turned into a prune and all dried up. Wondering whether the fortune I have invested in Palmers Cocoa Butter body lotion has made that difference. My nails still are hanging on, too - thankfully not discoloured, but with white ridges for every chemo treatment visible. So in case my chemo brain forgets how far I have got - just need to count those white ridges. And, of course - eye bows and lashes are gone. No chance of re growth until it is all over. 

With regard to the care packages given to us post chemo. There is really no golden rule, as we are all very individual and many have underlying health issues, too. So there is no one size fits all, unfortunately.

Just a simple example - Ibubrufen is a great painkiller, but not suitable for those, who are suffering with acid reflux or indigestion.

With respect to Hot Flushes - mine are always worst up to day 10 post treatment and then get very much better. Sage tablets can really be helpful with them, so it may be worth exploring those.

Hugs

Sue xxx

[bagpus]

Quick amusing thought to add - when I got my diagnosis I wrote out a big long list of healthy, immune-boosting, cancer-beating foods I wanted to restrict myself to.

I'm now living off strawberry milkshakes and jaffa cakes.

I think that sums up my chemo journey quite nicely!! x

[bagpus]

Hi all,

Well, this T thing is a sh*t isn't it?!! So, so sorry we're all feeling so crappy. My initial thoughts about the chemo-mouth have been obliterated by the sudden loss of my sense of taste and, like others have said, everything just tastes hideous. For some reason water tastes particularly yukky. I have found that strawberry milkshake (milk with the powdered stuff added in) tastes OK, so am now using this as my source of hydration.

Can't get comfy and keep having lie-downs in bed where at least I have the space to thrash about.

I was sent home from my chemo with co-codomal (paracetamol + coedine) for my aches and pains. I haven't had any yet (waiting until I'm desperate as I'm not sure how many days you can take it for) but since it has lots of warnings on it about addictiveness, I reckon it might help. I don't get why we're not all being sent home with the same care packages, surely there some 'centre of excellence' looking at what can help ease symptoms so we should all getting the best of everyone's knowledge?!

I called up the chemo ward this morning about the hot/cold flushes as I was surprised none of my nurses had warned me about it (since they go through such a long list of side effects) and they told me that T shouldn't cause them, as hot flushes are hormonal. However, I am on zoladex implants, plus herceptin's a hormone based therapy (I think?) so I wonder whether the T is just accentuating the hot flushes I might be getting from them anyway. Their advice was to start taking evening primrose but that it doesn't have an effect for 6 to 8 weeks!!! Great. However, they did suggest taking it anyway because hot flushes now could indicate a predication to them which could affect me with continuing hormone treatment (eg tomoxifan) so I'm going to get some next time I can bear to think about leaving the house.

I can also recommend zimovane (prescription) sleeping pills if anyone's having trouble sleeping. I took a couple last night after a particularly bad night the night before and slept solidly for 10 hours. While I still feel rubbish this morning, I at can at least tell that I've had a good night's sleep. I hate taking sleeping pills, particularly as I'm usually such a good sleeper, but I don't need poor nights' sleep adding to my problems!

I'm trying cottage pie tonight to see if that's any better tasting. Quiche at lunchtime was OK apart from the pastry, so perhaps a cheese omelette would be an option.

Feeling quite nostalgic for FEC now!!!

xxx