Portacath, Taxotere and swelling

Hi Lily et al,

I’m studying with the OU - French, as I feel I need to improve asap, as I now live here in France. I’ve done a degree with them before and can’t recommend them highly enough, especially if you’re undergoing something like bc and all the uncertainty and tedium that goes with treatment. What are you doing your Master’s in Lily?

As for taste, varies a bit throughout the cycle, but don’t enjoy tea and coffee like I usually do, can’t face chocolate (a real tragedy), cheese is tasteless. Toast tears my mouth to shreds in the first week. As I mentioned before, salty snacks taste OK-ish, but have been warned off them if I don’t want to end up like a barrage balloon. Sausages taste reasonable, croissants are fine, but the things I really enjoy are grated carrots with vinaigrette, celeriac remoulade, tomatoes, plums and drinking yoghurt - anything with a sharpish taste (sounds like it’s the same for you with the blackcurrant jam, Lily). I CAN eat, tho’ and that’s the main thing, I suppose!

Eyesight has improved a bit today - but next lot of chemo due on Friday! Hope everyone else (Peacock?) is on the up a bit and that we haven’t put Chris off anymore!

x to all

S

Hi,
I am taking a masters in teaching, which is an outreach course from the Institute of Education in London. So it is mostly blogging and posts on line and enormous essays to post in but a few face to face meetings locally. It was something for me but also will accelerate me through threshold so I go to a higher pay scale. Seemed like a good idea when I started it! Will you teach when you have completed it or is for your work? A good idea as you are living there.
Found out that it is the 5fU wrecking my eyes but he has promised it will reverse. Told me to get my eyes checked as steroids can trigger glaucome and it is in my family. That’s all I need! Not sure I can face the glaucome test as makes my eyes weep for hours. I have been prescribed liquid tears for when they are gritty. My eyes just got better in time for chemo today but it has not started just yet.I still cannot eat fruit although I am just tolerating bananas. So annoying.
Take care everyone. Peacock hope all is well
Lily x

Hello Girls

I am ok, still suffering a bit from a red breast which is still swollen (slightly) and oozing a bloody sort of liquid into the colostomy bag which is stuck around it. Its a bit messy to change this everyday, but I’ve got it down to a fine art now and it is so much more convenient than having it drenching my clothes like it was before. I’m just not sure if this infection/abscess has gone yet? I’ve now got another appointment to see someone else on Friday so it looks like a day out at the hospital - joy oh joy!

Our weather has turned a bit chilly in the mornings and evenings - how are you girls finding it? Consequently out has come the woolly winter hat as my poor baldy head is feeling the nip. Its still gloriously sunny during the day though, so not complaining.

I’m wondering why, after not having had chemo for 4 weeks now, I am still suffering with diarreah, any clues ladies? Normally this effect has worn off by the 3rd week. it looks like that 4th dose of tax really finished me off!

Hope your tooth isn’t causing you too many problems Bahons, I can’t believe you are about to have your 4th Tax on Friday. It seems as though it has passed so quickly. Will you be having further treatment after that?

Lily I used to suffer from dry eyes before my dx, and used to use liquid tears. This seems to have improved on chemo but my vision has worsened, like you all, my eyes just seem fuzzy most of the time. Especially first thing in the mornings, it takes a little while for my eyes to adjust to being awake.

What a good idea doing OU courses, perhaps that is something I should find out about. My French is pretty basic, I get by somehow, but it is so frustrating when you want to say more and can’t think of the words. Telephone calls are still very difficult in French, I am better face to face and dealing with French Administration is a nightmare, as I’m sure you know Bahons.

Anyway, I’ll wish you girls a happy day studying, don’t overdo it - where are you Chris?

xxxxx

HI peacock,
glad to hear you sounding so well. Abscesses chuck gunk out for ages and you suddenly realise the hole has shrunk slightly round the edges. Once the hole closes it is easier, the docs just seem to let them do their own thing, don’t they. I was surprise they didn’t do more in this day and age.Good luck on Friday, let us know how you get on.
CMF is making me cold , so I am under a blanket or have the heating on in the evening. Trouble is the men of the house are not cold, just me! My eldest daughter came round last night and had to get under the blanket too, so I know it is not just me, but my temperature is running at one degree below normal while on this drug. I am supposed to be studying but can’t get round to it and eyes are about to go mad from this dose and then worse when I get my second dose next week. I was relieve to hear that other have the same problem as it was worrying me.
Re the runs I think the drugs are cumulative. It took me ages to get over the 4th epi which is another tough drug. so I would not worry just yet. Also the drugs for the abscess might be causing it.
Wishing all of you on here well
Lily x

Hi All

Can’t type much (phew! - I hear you cry) - seem to have stuffed arm up again doing assignment on laptop! Tooth sorted - for the time being, with a temporary filling done without injection (to reduce the risk of infection). THAT was fun.

Lily - I really admire you doing a Master’s in teaching - I did a short placement (SAS) in a comprehensive last year and didn’t really feel it was for me. Hope your eyes are better - and that you are not feeling so chilled.

Peacock, sounds as tho’ you might finally be on the mend. I’ll keep everything crossed for you tomorrow. As for French courses, the OU’s are superb quality, but very expensive (as I discovered) if you’re not domiciled in the UK, as there is no Government subsidy, unfortunately.

4th Taxotere tomorrow - I’m hoping my blood won’t be up to it, coward that I am - just want a bit of a break!

Take care, all

X

S

Hello girls

Bahons good luck for your chemo tomorrow, hope you don’t suffer too much with SE this time. I found my 4th one wasn’t too bad but of course had this infection which didn’t help.

Hope you are not feeling the cold too badly Lily, sounds like you need a wheatbag or hot water bottle under that blanket.

I’ll post tomorrow after my hospital visit which hopefully will decide if I can carry on with chemo. Take care everyone

xxx

Hi,
just wanted to wish both of you luck for tomorrow. Bahons not sure what to say as you are hoping for a rest. the dentist sounds yuk and you were very brave. I am warmer mostly but then hot too, I need a new thermostat. I have felt a bit miserable today thinking about having bloods and treatment again next week, think it was seeing my friend who has finished all hers and planning going back to our school. I won’t get back this year so will miss her terribly. I am so pleased for her but we have propped each other up quite a lot. I have to say I love teaching but it drives you mad at times! Peacock good idea about the hot water bottle, must try to find it, but a bit better actually. Good luck with your hospital visit tomorrow, hope they are pleased with your progress and let you get back on with the treatment.
Lily x

Hi all

Hope you have cheered up a bit Lily - Time passes - albeit slowly - you will be finished one day, too. What’s next in the pipeline for you, treatment-wise?

I wasn’t brave at all at the dentist (I have what one of them once described as a ‘low pain threshold’, ie I am a five star, fully paid up, blue-blooded coward when it comes to anything to do with my mouth) - I think I may have damaged his chair upholstery with my nails at one point, but at least my tongue isn’t getting mangled by all the rough edges in my mouth any more - not a good idea when you’re having chemo - which I did this morning - so no break for me! - must have really rufty-tufty blood. Still taking steroids at night (much to the nurses’ horror) - and sleeping well!

Peacock - hope all went well at the hospital today. I see that you have posted a thread about preparing for a mastectomy. Mine was way back in 1993 - I was pleasantly surprised about how neat it looked. If you were going to be having your op in an NHS hospital, I would have suggested earplugs and extra food, plus antiseptic wipes, but as your’re in France you probably won’t need any of that. Plenty to read. Comfy crop top to wear home afterwards, perhaps? Cushion (if they will let you bring one in from home - may not because of infection risk) to support your arm, especially the elbow, afterwards and for the journey home - and when resting at home.

Gotta get back to the studying - I’m full of steroid induced bright ideas at the moment - better get them down before all that inspiration fades away…

X to all

S

Hi all

Lily glad to hear that you are feeling better, you can’t help having down days I think that is power for the course of the treatment. Is the end in sight for you yet?

Glad to hear your dentist visit went well and your tooth is now sorted and you’re 4th chemo is now done and dusted - is that the end of your treatment now or are you changing to another type? Are you also having Herceptin?

My visit went ok, I still have the abcess according to the scan but it has got smaller. I also had my 5th taxotere today, unexpectedly, so I wasn’t prepared, hadn’t taken steroids or anti sickness meds. I wonder how I will be tomorrow. He told me to take steroids tonight and then twice tomorrow, of 50mg Prednisolone! I would be building my own house myself with all that steroid if I did. Normally I take steroids the day after and for 2 more days, 40 mg, then 20mg, then 10 mg. And I only take it in the morning. How different all these doctors are.

Because he doesn’t want me to have a problem with infection again this time, tomorrow I have to have an injection of neuplasta (think thats how its spelt).

I asked a few questions like will I still have to have 8 courses of chemo, or can it be just 6 and will it be all tax or will I change, and his reply was that he was concerned about the treatment I had received so far (at the previous hospital) so he is gearing up treatment to suit me individually every 3 weeks. Next week I will be just having Herceptin again by itself before the next chemo. I hope this can be arranged to be given at the same time again as its a 4 hour round trip to the hospital, which is tiring in itself.

So, we will be comparing notes I think Bahons but at the moment I must say I feel ok.

Good luck with the studying, hope you manage to get lots done with your steroid fix and hope tomorrow is a better day for you Lily.

Take care xxxx

Hi there

Peacock, we are now on the same Taxotere cycle! Still feeling OK-ish, though now sporting my bright red steroid nose. I’m sure it won’t make much difference, not having had any steroids the day before. I had my first ever one ‘cold turkey’ - with no steroids beforehand (my fault, I’d jokingly asked if I could start right now and they said yes! So about 3 hours later, there I was, full of the stuff. Served me right).

Had another moan to the doc about the thrush and the depression, altho’, I seem to be getting the hang of keeping the thrush under control - they have given me loads of stuff. The depression - too strong a word, really -just feeling down and grumpy (not my usual style) - is a pain, but not severe enough to warrant intervention, at this stage. They write my GP a letter after each treatment, which is nice, as I don’t have to give him chapter and verse each time I see him.

Glad to hear your abscess is getting smaller, Peacock - that can only be good news. Sounds as tho’ you are getting more and better help in Toulouse - hope the travelling is not tiring you out too much and that they can synchronise the Herceptin with everything else. Will you be having your mastectomy, there, too?

Lily, I think you should try to enjoy your break from teaching - from what I’ve seen, it’s jolly stressful and very full-on! Could you do voluntary work in evening/day classes to try to fill the gap a bit? Where I used to live in the UK, they were always looking for suitable people to help with adult literacy (especially for immigrants) and numeracy classes.

Have a good weekend, all.

X

S

Hi,
gosh you two have been busy with treatment and appointments.
Bahons- I too am terrified of the dentist and not being able to go was one of the good things about being on chemo! Such is my fear of the drill. I did run into mouth problems which was a broken sharp edge of a crown though and had to have it smoothed. i couldn’t believe how much trouble a sharp edge could cause while on chemo with our mouths so much more delicate. Hope yours is all better now and not aching. I have not had a red steroid nose but get a mediterranean tan all over, which everyone says makes me look really well. Then I go pale and pasty and they tell me I look ill! I feel worse when I am red. I have no experience of tax, it must be strong if you need steroids before even starting, why is that? Is it peculiar to tax or all taxanes? I had trouble with thrush a couple of cycles ago. The head research nurse thought I had pockets of it right through my body and got me on a 7 day course, of the single dose tablets. I could feel it going and trying to creep back each day but eventually shifted it completely on that long course. They have now given me 14 to take as and when I need! That would kill off anf fungus!
Peacock - how are you feeling? Pleased to see your abscess is improving, although still hanging around. They are persistent little wotsits and mine took months to completely go. i do go up and down a bit at times, sorry. In particular going 2 weeks in a row is taking some time to get used to, if ever! I can’t see straight today and due back in again on Tuesday, bloods on Monday, yuk. you have such a long journey it must take a ,lot of arranging. Is your OH able to take time off when they want? it sounds like you have been fortunate to move hospitals though and I am pleased you are now with someone who is taking much better care of you. The neulasta should help build up your immune system to help you fight it too. I feel quite humbled by how much you have going on and will skulk back to the sofa and think happy thoughts!! had a bad night woken by son and friends at 3.30 a.m. and then another of my offspring at 7.30 a.m. so the whole day is out
Hope you both get over this next dose before too long
Hugs
Lily x

Hello girls

Bahons - I hope you aren’t suffering too much from the after effects? I’ve been ok but today am beginning to feel achey especially in my knees. I also feel a bit nauseaus, but nothing a biscuit or two won’t sort out. I know this is just the start of “chemo” SE. My mouth isn’t feeling so good this time. Do they give you that horrible orange stuff that you mix with bicarb? It seems quite effective thou cos so far I haven’t had much of a problem with my mouth. How many more tax will you be having? I am not sure if I will have the full 8 as originally prescribed, or not.

Lily - I don’t know why we are supposed to take steroids the day before tax, maybe as you say its the strength. My OH normally works away on a shift pattern of 2 weeks away and then 2 weeks home. Since my dx though, he has asked for extended compassionate leave as I have no one to help out when the going gets a bit tough. So whilst he is looking after me he is also building our new house and he’s doing a brill job so far. I can’t wait to have a bath after living in a Mobile Home for 9 months with just a shower, that will be my Xmas pressie. On the down side of course, money is very tight. So far I have been able to continue with working as I work via the internet, but am self employed so we’ll have to see how it goes. I hope your treatment goes ok tomorrow, get the blankets out ready and the hot water bottles to ward off that chilliness. Hope the vampires manage to get some blood ok?

Anyway, must think about getting dressed and making a coffee for Mr Peacock. Take care

xxxx

Hi,
Peacock so glad to hear you cheery despite everything. I can’t imagine having such a long wait for a bath! I expect you will dive in it and flood the bathroom. Good company to let your Oh stay to help, must be really helpful when the pains start. It sounds so scary when I read about that, as I am not very brave at all.

I had Frankenstein’s son taking my blood today and he wiggled the needle up and down and made me ooh and aah a bit. Why do they do i? Anyway thinking about my big cooked breakfast of eggs , bacon and fried bread in the hospital canteen befor my chemo. I have to really fill my stomach in the morning, now the piriton makes me sleep through the lunchtime. It is a labour of love! I have had the central heating on almost every night as I feel so cold. Shaking with cold when I get into bed and absolutely cooking hot when I wake up, but not sweaty like flushes. Strange. I have also been in contact possibly, with shingles so have to sit it out and see if it has any effect on me.
Bahons, hope you are starting to get over the worst effects and to start to feel more like yourself. Has the medication helped to stop the thrush this time, nothing worse to make you feel worse.
take care everyone
Lily x

Hi there

Going downhill in sync with you, I think, Peacock! - I have a mouth like a giant furball. I wash mine out with "Eludril’ (and I also use bicarb solution on its own) from the chemists and suck sugar free sweets during the day. I also have a mini Magnum on really bad days - they’re great for hot sore mouths. I am SO glad I got my tooth fixed last week - the idea of all those jagged edges in my mouth in contact with my swollen yellow tongue doesn’t bear thinking about! I do admire you coping with all this plus trying to work and build a house, too. How far have you got with it?

Hi Lily - hope you are going on OK, too. I too was told to fill up before I had FEC chemo four years ago. We had a friend who had not only been a chemo nurse, but had had breast cancer too and she said to shovel in as much carbohydrate (I used to take in a big slab of parkin - all those oats! - and try to finish it as the first bit of chemo went in) as you possibly can beforehand, as it lines the gut and helps to stop the nausea and vomiting. I found it helped quite a bit.

Re: the cold - I feel chillier on chemo, too, though nothing like as bad as you, Lily.

No sign of thrush yet, but it’s early days!

Look after yourselves!

X

S

Hi All

Lily, how did your chemo go today, hope you have a reasonable day tomorrow, did you manage to eat a good meal beforehand?

S, the downhill slide is getting slippier - I’ve struggled through today and retired to bed early to get under the covers, electric blanket is on and going to watch Holby before sleeping. My knees are agony and generally walking has been a chore today. Also had stomach pains and diarreah too, oh joy! Haven’t got much appetite today which doesn’t help the diabetes I have, another thing to deal with as well as the BC.

As for the house build, well yesterday OH and our son started to put the wooden A frame on for the roof. We hope it will be watertight by the end of October. Probably money will run out so we won’t be able to finish it all, but it would be nice if we were living in a big open space by Christmas. We won’t be able to put all the interior rooms in until the work situation improves, or when OH returns to work after my treatment. Still, this year hasn’t been all bad - we’ve got our own grand designs going up, we live in the beautiful countryside and have fantastic views across open land.

Hope you both don’t suffer too badly, thinking about you

xxx

Hi,
poor you two with all the pains. I guess you just have to hang on to the fact that tax is a top drug and very expensive so will be worth going through this for a better long term result. I am on much cheaper drugs, which seem to be given as first choice unless you have other criteria. Every time I think I have worked out when they use certain ones, I read something which disputes it. I am on a research trial so that is probably another financial consideration for the hospital as Roche pay for all the drugs and prescriptions. I guess that makes me really cheap!! LOL On a more serious note I really hope you have seen the worst and are on the upward climb out of this one.
I got my poison today, visit 8 out of 12, so have now completed 6 out of my total 8 cycles.No cheer coming out yet. The pharmacy sent no drugs so I/(lots of us), sat for 2 1/2 hours with the hubber needle in my chest being given just 100 mls of saline per hour - was not very pleased to be left there so long as still a bit grrr about only going a week ago for chemo. They were very nice and careful not to get me more anxious! It went perfectly for the first time ever so that was a good bonus and snored my way to the end because of the piriton chaser.
When I had a very very sore mouth I was given steroids that you can put on your mouth and tongue, might be worth asking for. I hated it but the second the stuff went on any part of my mouth it was totally pain free. Sort of numbed but without the loss of feeling, more anaethesised I guess. I like the oaty thing for my tum idea, yum will be off to get some of those. I have tummy gripes right through with CMF but not too extreme. Just can’t chance eating so many things just stodge and no fruit or veg in any shape or form. I have had the heating on and snuggled under a cozy blanket, it does help. The house plans sound very exciting, my hubby and I are great fans of grand designs prog. He is an architect so really into all that stuff. He was asked to do a house to put forward for inclusion for that, but the owner did not want any publicity so being done privately. It would have been so funny to se him.
Will finish here, very bouncy due to steroids and probably up all night. It is 12.20 and no sign of tiredness. Hope you are all tucked up and getting better. Take care and hope the horrid pains are easing.
Lily x

Hi both

Peaock - the house sounds fab! ('Fraid we chickened out on that one and, in the words of Blue Peter, bought one someone else made earlier). I will be keeping my fingers crossed for a fine, dry autumn for you, so that good progress can be made and you will be nice and snug well in time for Xmas. I don’t envy you having to cope with diabetes, too, that must just make everything more complicated and inconvenient. You will have no doubt done the best thing by having an early night - hope you woke up feeling better this morning.

Lily, so sorry, you had to hang around like that - how depressing. I always think that the less time anyone spends in hospital, the less likely they are to catch something! Sometimes I am so glad I am now in France. Everyone is mortified if they keep you waiting. Last week I turned up at 0930 and was finished by 12.15 (and that included eating my hospital lunch afterwards). I was interested to hear your comments about Taxotere (I had no idea it was particularly expensive) - I have a feeling that I should have had it 4 years ago in the UK in addition to FEC…as there was a French lady, married to an Englishman, living near me who was having FEC too and her French relatives were begging her to come back to France because they thought FEC on its own was out of date (from what I read on here now, they do seem to be adding other drugs to FEC in the UK, now). She didn’t - decided to stay with her husband and children.

I am feeling a bit ‘guilty’ at the moment, with both of you suffering as you are, as the Taxotere hasn’t poleaxed me quite as badly this time - yet! It may well turn and bite me on the behind shortly, I know.

All the best to you both - keep looking after yourselves.

X

S

Hi,
I have no side effects so far since sleeping off the piriton, just feel completely normal. Expecting eye trouble to appear later in the week as usual although I might try doing nothing and seeing if that stops it. I think it is movement based like travel sickness, which I get terribly also on boats and planes. I am cutting down my tablets each cycle and feel better for it. Hope this plan continues to work.
Bahons I read that tax is £900 plus a dose but that might be out of date now as it is more widely used. The ondansetron tablets are £7 each !! Think how much we munch through on that in hospitals everywhere. I think my big delay (which is not usual) was because someone in the UK died after being given the wrong dose of chemo 7 times!! I think their dose was doubled each time. So the Pharmacies might have all been double checking the day after that as a precaution. I am glad if they did do more checks. I think FEC is still used regularly as standard treatment, I have not heard of tax used at the same time. It is used next if there is a problem with FEC. I think TAC is commonly used too for larger tumours or with node spread but not sure exactly how they split between which you get. I am on epi/cmf on a research trial but oithers get it as standard in their area. I was told the epi dosage is very high on the trial. You hear so many different views. Peacock how is the abscess healing? Hope your side effects are starting to improve now too. I agree the house sounds lovely, do you have a nice view or are you in a town setting?
Love
Lily x

Hi Lily - yes heard about that poor guy being killed by his chemo. Terrible.

Ondansetron £7 a tablet! Amazing for something that is so widely and commonly prescribed. I do know that some things are very expensive to manufacture/extract - apparently calcium is one of them. I’ve been taking Calcium/Vit D with ibandrondic acid for years (I don’t have osteoporosis and my then GP agreed to prescribe it for me as a preventative measure because of my history) and I was told, about four years, ago that a month’s supply of calcium cost over £70.

Hope your vision is not too bad this time. Some people use those seasickness armbands when they have chemo - don’t know how effective they are, but have you tried them? Mine seems to have evolved into a permanent tic in both eyes - I probably look very shifty.

Hope all goes well tomorrow, Peacock.

Sleep tight, all

Hi
Bahons I shall think of you as winking all the time now. Is it very annoying? My vision is holding but tomorrow and the weekend are the crunch days. I am trying to avoid driving and rushing around too much to see if that helps to keep it stable. The worst thing of all is if I stand in ahigh street and see evryone moving. Having my eyes checked in a wekk or two and hope I can read anything! My husband when asked how his eye test went, always says I could see the light above the letters and that was it! You know I have the wristbands and forgot to ever try them. Chemo memory failure again. Are you feeling ok?
Peacock so sorry about your back and problems on the other posts and hoping for a better night for you too. Mind you I was just awake unlike poor you. Keep us posted, did you speak to a doctor in the end ?
Take care
Lily x