Portacath, Taxotere and swelling

Hi all

Be grateful on any input re this:

Got a Portacath - brill. But after 3rd Taxotere my right breast (which is actually a reconstruction from an earlier cancer) where the Portacath is, has got very puffy. It’s not red, or inflamed, but it is slighly painful and quite uncomfortable (was never like this before and I’ve had the portacath in for 9 months now) and I have a suspicion that the ‘Port’ end has moved towards my armpit!

Anybody had anything similar? Which is more likely to be causing the problem?The Portacath or the Taxotere?

Your thoughts much appreciated!

X

S

Hi Bahons
I can’t help with your question, sorry, I have a portacath but since the early days doesn’t cause me too many problems unless I try to lay on it.

I just wanted to say that I hope you haven’t suffered too badly with your latest round of chemo which I think was last week? I thought of you last week as we passed Toulouse airport and I was on my way to Claudius Regaud. I am back there tomorrow, to see the Onc again along with a multi disciplinary team - so I am not sure if I will have Tax no. 5 tomorrow or not.

Anyway, sorry to hijack your thread and hope someone can help you. Did you suffer again with the thrush, aches & pains etc? Hope it hasn’t been so bad for you.

Take it easy xx

Hi,
I am not on tax but I do have the same port. I had a real panic recently as a tube appeared in my neck, going up from my collarbone and I thought something had gone wrong. The tube had moved along the vein after the last dose disturbed it but it was not red at all. I am not sure if this is of any help but wanted you to know that they move. I got ordered in the next day to have it checked and was fine. The only thing with waiting till your next visit is they will delay your treatment if they are not happy with the port. Also if you need anything like antibiotics they can sort it out. I think I would get it checked asap as there is always a risk of setting lymphoedema off with swelling and being near the armpit.
Sorry not to be more cheerful but I think they will investigate it before chemo anyway. No experience of the tax part of the problem, sorry,
Good luck
Lily x

Hi both

Peacock, I thought of you too as we went round the ring road! I’m sure we must have passed each other! I would have said that last round of chemo was not too bad (thrush much better controlled, mainly) had it not been for the bad weekend I’ve just had (dreadful nocturnal stomach cramps for hours followed by diarrohea in the wee small hours and then nothing until 2 am the next morning!). And then this business of the portacath. It seems to me that every dose of Taxotere brings new side effects - what do you think?

Lily, thanks for telling me of your experience. I already have lymphoedema in the arm closest to the portacath, so you can imagine I’m quite anxious. My arm seems to be OK at the moment, altho’ I do have some puffy fingers (and toes) which I understand can result from this type of chemo.

I’ll be ringing the hospital this morning.

Peacock, I wish you all the best with your appointment today. Let us know how you get on.

X

S

Hello Lily and Bahons

I met with 4 doctors today and it has been decided that I have a large abscess, which has to be drained and cleared before I can continue with chemo. The abscess is too large to know how big the tumour is at the moment. So tomorrow I am going into CR for an operation. I wish they could just take the breast off but of course they can’t until the chemo has finished.

I always get stomach cramps and diarreah with chemo, it usually starts about 4 or 5 days after so then I take Spasfon tablets and wait until it passes. For the first few days after chemo I have constipation, these have been about the only consistent side effects so far, so yes each round of chemo brings new side effects. I have noticed how my skin is really itchy now, I am scratching all the time, it is really embarrasing but the Onc today said its a normal side effect and has given me some anti histamines for it.

So wish me luck for this new op, and I hope you got on ok when you phoned the hospital.

xxx

Hi Peacock. At least you know what the problem is now and they are dealing with it very quickly. I’ll be thinking of you tomorrow - I take it you will operated on in Toulouse?

Sorry to hear you are all itchy now - every day, something new and horrible, isn’t it? I had itchy eyes at the beginning, but that passed. Now I’ve just got blurry vision - my glasses are nearly useless!

The diarrhea is new for me - I was mildly constipated each time before, but it settled and I wasn’t in any discomfort. The stomach cramps I’m getting now they have told me are from the dexamethasone! I don’t get the cramps if I don’t eat, so that’s one way of solving the problem! And I don’t feel like eating much anyway because my mouth tastes as tho’ something’s died in it all the time.

Anyhow, I digress - rang the hospital and they said to come in and they’d take a look at the Portacath. They were perfectly happy with it said that the swelling from Taxotere can pick on anywhere in your bod, pretty much. Which might explain why my right side is troubled with it - mastectomy, axillary clearance and then recon surgery 3 years later - there’s been a lot of digging around in that area.

All the best for your op tomorrow. Will you enjoy the ‘holiday’ from chemo in a weird sort of way - or do you just want to get it all over and done with asap?

Best wishes

X

S

Hi
I feel I should start with bonjour, comment ca va to you two, trouble is the brain is really struggling since moving to CMF. I also have blurry vision, watery eyes and the trots in the middle of the night if I eat any fruit or vegetables at all. This is after terrible constipation and fatigue for a few days on epi. Both of them give me the horrible mouth but at least I get a supplement while on methotrexate that seems to work well for a while. Not sure whether the trots or being bunged up is worse. I suppose you don’t need the loo very quickly with the latter.LOL

Peacock I feel so sorry for you having to have the abscess treated too and wish you all the best for a speedy recovery. I had an abscess a few years ago, which burst while I was in A & E waiting to be admitted, not anywhere near as bad as it sounds but still had to have an op. Apparently they pop it out with a spoon as the infection is in a sort of sack or bubble. They might have been joking about that! It was a very quick op by the way. Big hugs to you.
Bahons2 glad to hear the port is ok, at least that is one less worry and hope it feels much better soon.
Lily x

Hi Lily - thanks for your good wishes (I’m being given some MLD, which id helping the swelling).

Sorry to hear about your SEs, but I do feel less alone with mine now! My digestive problems seem to easing slightly… but I can still only eat a normal breakfast, a bit of lunch, dinner is an ongoing nightmare (although, to be fair, I don’t have much of an appetite). Unlike you, all I can seem to stomach is fruit - mostly plums, bananas and stewed apple, plus eggs and cakes. I am so fed up of feeling secondhand all the time, it doesn’t seem to be letting up much over the three week cycle (hoping my blood won’t be up to the next one and I’ll get an extra week off, to be honest) and I am finding it is making me very depressed. How about you?

I also seemed to have turned into a lump of blotting paper. Drinking loads, but not much the other end! You too?

Peacock, are you out of hospital yet? Hope it went well.

X

S

Hi,
I am definitely retaining loads of water. My wedding ring is almost sawing my finger off and my feet are pumped to bursting point every night, especially if it has been hot during the day.I sleep with my feet raised but it is back every night. Glad to share my side effects, they are like old friends now, the kind you want to go home early!! I am sorry you feel depressed and I would say try to get out any time you can, even if just a little way. Staying in the house makes me feel much worse. Sometimes I just sit with the doors open to breathe the outside air. I am just muddled at the moment as I have just changed to CMF and as they keep changing things I cannot settle into a new routine. I just don’t know when each side effect will start and stop. Back in on Tuesday for the next double. Mine is a 28 day cycle now so seems to be going really slowly.
Hope you feel brighter
Lily x

Hi Lily

Gosh, you sound as tho’ you are really puffing up! Are they giving you anything for it?

I’ve got what I call a ‘Tom and Jerry’ finger on r hand, puffy knuckles on r hand and a set of T & J toes on r foot! Plus a squishy tummy. I’m sure the doc said at my last appt that they could give me something, but he didn’t think mine was that bad and from you’ve said about yours, I don’t think it is! I’ve been advised to do the obvious -cut down on salt (never add any, anyway) and keep fluid intake up - difficult, as nearly everything tastes vile, but I’m having a go.

I’ve been told that the depression (probably too strong a word, to be fair - all round misery-guts and world class grump rolled into one might be a better description) is an effect of the Taxotere on the brain and today I feel better and brighter. You are right about the fresh air, when I do get out, it helps.

Hope you get settled in your new chemo routine asap. I think knowing the pattern of the side effects helps and when they come at you unexpectedly it is definitely harder. Do you manage any good days with two drugs but on a 28 day cycle?

X

S

Hi,
glad to hear my moan made you feel better. LOL I always feel better when i get it out my system. I get 3 drugs each time and then they repeat exactly the same huge amounts the next week. Apparently you could not take the volume in one hit!! Well that made me feel worse, being told that! I am not sure how the body takes another blast on day 8 but it seems to and many others have gone ahead of me and managed it. They are struggling to get the C into me and keep changing things, which is making it slower for me to settle down into. I do worry a bit about changes. Now I have to have piriton too, so just as I was about to relax, I am now wondering if that will do anything different to me. I did not realise that Tax had that effect but I have not had that drug. Does it make it any easier to deal with if you know it is drug induced? Do you lose nails on that one?
I have had diuretics in the past but not sure if I can have them now, will ask on Tuesday when I se the unit doctor. Thank you, I forgot that salt is a problem but that is what I fancy on this drug. You can’t win! How are your eyes? I am losing focus beyond even quite short distance on certain days. It makes me feel very odd in open spaces.
Peacock hope you are ok and can let us know soon.
Lily x

Hi Lily

Thanks for the reply - I don’t envy you, coping with that cocktail of drugs! What exactly is Piriton?

On Taxotere, my nailbeds are painful, but my nails are holding up well - no sign of them lifting out of their beds yet, but I do have another 3 to go. Peacock gave me this tip about painting them as dark as possible and I’ve done that; also here they give you ice mittens for your hands and feet if you want them to try to save your hands a bit from the peeling and loose nails, and that seems to help, too.

Snap with the eyes - mine stream too, but the eyelids feel dry and sore. Bizarre. The Taxotere is actually making me long-sighted than I already am, so it’s becoming more difficult to read.

Snap also with the salty things, but I am trying hard to resist them. It’s difficult though, isn’t it?. I don’t know about you, but crisps, cashew nuts, etc are among the few things that taste normal to me!

And do you know the best thing? Cracked a tooth last night and a huge chunk fell away - now I have to deal with a trip to the dentist as well!

Are you feeling any more comfortable - any improvement with the fluid retention?

Peacock, hope you are soon back with us.

X

S

Hello Bahons and Lily, came out from hospital today and have caught up with you - it seems lots has been going on, hope you get your tooth sorted out Bahons, what else will life throw at us I wonder. Lily, how’s it going are things settling down for you now? Piriton is an anti histamine, have you been suffering from itchy skin or rashes?

My abscess has been drained, and in a way I suppose I am enjoying my chemo break, but anxious at the same time as its going to set me back now. I’ve been told I can’t continue with chemo until this infection is well on its way as its too dangerous.

I’ve had 3 Herceptin now, 4 Taxotere - and even though I didn’t have Tax this week my fingers are still numb, one day I have diarreah so the hemorroids are like grapes now (sorry, too much info) and then the next day don’t have a “movement”. My skin is so itchy, I have been given anti histamines to try to help that. I feel like a gorilla, cooting myself all the time and so wish I had an electrical back scratcher cos its driving me nuts. Apparently it is another SE to combat.

I have another appointment for Friday to check out if the infection has cleared enough for chemo to re start. I am a little concerned about NOT having chemo in case the tumour starts to get bigger again.

One thing that hasn’t been disturbed is my appetite. Except for the first few days after chemo I’ve been eating quite normally, but how strange, I’ve been craving for salty things too and yet hardly touched salt before. My weight has increased since diagnosis, the Dr told me this is quite common because the treatment is so hard, you get more tired and are less active - I’m probably the only person having chemo who puts on weight.

Eyes - well I can’t do any reading/computer work without wearing my glasses now, so my eyesight has deteriorated too. Mind you the runny nose thing seems to have passed for now.

Well, off to have another scratch - the things we go through! Good to be back, speak soon

xxxxx

Hi,
Peacock so lovely to hear you have had the op but sorry that you have all these other things to put up with. The itching sounds horrible. I have to have piriton because I am reacting to the cyclophosphamide and it made my nostrils close so harder to breathe and pains up nose and head. Going for my next one on the next 2 Tuesdays so will see if it works. I started a thread to fond out more and it seems like I will sleep through it! How long do you expect to be off chemo, I know abscesses can be tricky little b…rs to heal up sometimes. Mine was just left open, is yours the same? Bahons it is just a regular treatment but uses 3 drugs and given on 2 days. Pain in the neck but mild on the side effects for me, compared to epi.So soory about the tooth, will you be able to have it done? Here I was told they can’t do certain things, you might need to ask the hospital or BCN. Good luck with it, I hate the dentist. My ring is still very tight but will just turn round, but no chance of getting it off even if I wanted to! My eyes are ok so driving until the next one hits them again. I have real trouble in the supermarket though and can’t see much at all by the time I get to the checkout. I think it is the constant movement of my head doing it. Eyes have just stopped dripping, hooray.
Take care
Lily x

Hi both - lovely to hear from you

Peacock - sorry to hear you are all itchy! I haven’t wanted to scratch any more than usual, except my head. I think I’ve only had one mozzie bite since I started this chemo, so I’m actually getting a bit of peace from it at the moment.

I’m sure the effects of Taxotere must linger on a fair bit, Peacock, and that your tumour won’t have a chance to start growing again so quickly. However, I hope they can start you on the next lot asap, as it’s nice to keep things moving along, isn’t it?

Lily - sorry to hear about your allergic reaction, still if the Piriton makes you feel more comfortable, it will be worth it. This eyesight thing is a right so-and-so, isn’t?

Well, I spoke to the hospital and they were very laid back about my tooth (they seem very laid back about everything, quite honestly), but advised me to try to get it done just before the next chemo from the point of view of my immune system. The lovely dentist just round the corner has closed down her business and as we haven’t lived here very long, I had to resort to the yellow pages. Ended up with an appt on Wed (next chemo this Fri) at the closest dentist to OH’s favourite bar!

Take care, both

X

S

Hi Ladies,
hope its ok for me to chat on this thread.
You all amaze me for the cr.p you have been through and yet believe it or not your ‘humour’ shines through (even if you are not aware). I know choice is not in our dictionary but b. hell how much sh.t can we take. I feel sorry for myself sometimes but so far hve had relatively ‘mild’ side-effects. Taxotere is to come… reading this site, I could be terrified, but like all of you, IT WILL BE DONE.!!!
I have had 3 tac so far but onc doesnt seem to think IT is shrinking, so when he uses the pinchers on me to check lump b4 no.4 he said he may start tax earlier. - which I suppose may mean waiting for it to be made up in the lab and therefore could be waiting for hours)(a friend said if he uses the pinchers on me again I should grab him by a certain male part and twist, none too gently!!!)
no.4 of whatever is on the 25th sept. Just beginning to feel a bit better after last tac. In bed for 1st week usually feeling sh.t. Everything tastes foul and struggle to drink water let alone eat. Sadly tho I catch up in the last 2 weeks even though there is nothing that tastes enjoyable. Strange how I eat even though I dont really want it, so weight loss will never be an issue!!! - unless tax knows different!, I am extra extra sensitive to smells and loathe all perfumes, room freshners etc it all turns my stomache, no I am not pregnant…
I would leave the windows open wider but am afraid the cat may not realise and … well, need I say more…

I bought some licorice creams from the chemist, taste not too bad considering… for medical purposes though u understand, not enjoyment… it seems to have a similar effect as prunes, but as I overdosed on a tin of prunes I dont think I can ever face one again, not even hidden under custard.

Lily - any more giant snail sitting???

I had to change my phone no. so Tiscali took about a month to sort it out, poor things!!!
So couldnt get on line.

Oh well, here goes, must get showered, change bed, bit of ironing, bit of shopping, dogs to cuddle (walk I mean) … and another day begins, I day nearer to getting this done and dusted - for all of us xxx take care, we are getting there…

Chris x

Hello Chris I wondered why you hadn’t been on the site much, glad to hear you are getting through it bit by bit, it is surprising how quickly the time goes.

Sense of smell? Tell me about it, I can smell bad breath a mile off , its awful as I have to cup my hand over my nose to stop me from being sick. Other smells too are a nightmare.

Bahons, yes you are right my friend who is a nurse, spoke to a nurse at the Linda McCartney centre who said that its ok to go without chemo for up to 4 courses, but with Herceptin which I am having it shouldn’t be a problem at all. I am feeling much better day by day, so hopefully chemo will start up again very soon. Glad you got the dentist sorted out, what a good excuse for your OH to have a beer. Is your next chemo the 3rd tax?

Lily the abscess hole is open, but I am wearing a type of colostomy bag on it which is catching all the oozing, but this is getting less and less. I am back at the hospital on Friday, to see if chemo can start up again and to have a scan of the breast. Hope you haven’t been feeling too bad over the weekend?

Bye for now, take care ladies and will speak soon xxxx

Hi,
I have been out enjoying my good spell before heading back down the hole again on the next 2 Tuesdays - fab. Still I will be 75% of the way through after this double,which is much better than my crisis at 50 %, when I had a wobble at doing the whole lot over again. Anyway I have built up lots of good memories to keep me going through the next bit.
Peacock, hope you get back on track very soon. I hope it is not too uncomfortable, mine used to have little spells of hurting a bit like contractions and then stop for the rest of the day. Are you on antibiotics too?Good luck on Friday.
Dipstick - hi, glad it was just technology that was keeping you away. How are you? Your side effects sound horrible too. Tax is a very powerful drug, so I think if he says the other regime is not working well, you will be glad to change. It might even make it easier to put up with its effects. Don’t forget some people are fine on it.So might you. I had chemo first so have never felt the pinchers, luckily from the sound of it! Keep chugging along and hope things taste nicer on tax. No more snails thank goodness, yuk! Also try rhubarb for a go go go change!!!
Bahons, hi. Dentist and chemo on one week, what a nightmare. Not sure which I would hate most out of those two. Glad you found somewhere and don’t forget to tell them you are on chemo. I had to tell them exactly which drugs and doses I was having when I went. I found a plus to my eye sight problem. Like one of the other ladies on CMF, although I cannot see close things, my long distance sight is now really good. It is naturally the same as with glasses now, so I could actually work out which was my son in the football match today without looking for his red boots to identify him!!
Lily x

Hi all

Chris - welcome to the thread! You will be a Taxotere expert before too long!

Peacock, Lily - glad to know everyone is up and about. I’m with you both on the smells thing. Blackcurrant jam really turned my stomach the other day. I’m glad the change in eyesight is working in your favour, Lily - a little bonus, I suppose. Peacock, good to hear the abcess is finally starting to behave itself a bit.

I can’t type much - I am supposed to be working - I am a part time student and I have a load of stuff that is due in and I must get on with it while I still have a few wits about me (next Taxotere on Fri - that will make the 4th one). Trouble is, there’s always something going on on this site!

Will be oh so glad to get to the dentist - yet more tooth/filling fell away on Saturday night. Typical, the one week that everything stops tasting like Lego bricks wrapped in clingfilm, I can’t chew.

Take care, all

X

S

Hi everyone
Bahons, - What are you studying? I am taking a masters at the moment and about to start year 3 if I could find my brain, remember what I just read and find any motivation at all to keep going. Don’t forget that once you have had cancer, you are covered by the Disability act. I have had to use this as I am supposed to go to face to face meetings. Even if I could drive, I just couldn’t face all those people.
The tooth sounds horrible and I hope it is not too sore. Bad luck that your taste came back then. Still just start dreaming about nice tastes for the next one. What will you eat then?

I am loving blackcurrant jam every morning but have not been able to eat any chocolate while on chemo. So sad. What do you all feel like eating. Peacock hope your abscess is healing up abit more every day and not painful. Hi Chris, smells are not bothering me, perhaps that sense has gone too!! Can’t see properly, that is really annoying me though.
Lily x