Anyone had weekly Taxol?

[belinda]

Hi jo, this is my third chemo, had Capecitabine, doxorubicin and now this one which has quite whacked me out. More so than the other two. I just about recover the night before the next chemo. X

[Mitch23]

Hi all

Does anyone taking this taxol feel as if they can't quench their thirst? I know it affects your taste buds (which it is) and I feel as if I have a coating of something inside my mouth! Not nice. I don't know about anyone else but I've only had two sessions and I feel soooo tired. Also, very down. I try to keep 'positive' but it's dragging me back in. I go to the marsden and watched that programme on the bbc about the work they are doing. I don't know why but it's made me feel worse when I think I should have been taking something positive from it!
What a Nitemare this is!
Anyway, hope everyone is doing as well as they can

Hugs jo x

[belinda]

Glad you found it useful Sianie. 🙂 x

[Sianie]

Thanks you belinda for the auzzie site it was very interesting to read and did give a lot of hope. Thanks again and I hope everyone is coping well from day to day with your treatments xxx

[EJ81]

Thanks Belinda, glad its just a 'normal' side effect! Invested in some strepsils to try and numb the tickle yesterday and they did help - even the nurses said I was coughing less. Might get one of those anaesthetic throat sprays for next time. The constantly dripping nose is driving me loopy! xxxx

[belinda]

Yes I have the cough too EJ. Didn't have it before starting chemo. My main side effects, three weeks in, are extreme tiredness, with some breathlessness, constipation, heartburn, the constant drippy nose. At the time of typing this too soon for nails to start playing up... 🙂

[belinda]

Hi Gracie, oh same here with tiredness, when I next have the week off I will email you. Crazy tiredness but hope these chemo's are working well for us. Take Care. X

[EJ81]

Does anyone else finds it makes them cough? I seem to be getting a dry cough more and more during the infusion and for a while after. Xxx

[funnyface]

Belinda, Hope you are hanging in OK on taxol. Gemcitibine is going good for me. Just extremely tired! Funnyface

[Sianie]

Thank you belinda for your link I will save this for my bed time reading and when I'm doing a night feed for my 7 week daughter xxx

[EJ81]

Just read a really good tip I wish I'd seen before I had my port fitted! Trace down your bra straps so the surgeon can place it where they won't rub. The guy who did mine said he'd try and put it so it wouldn't rub, and its pretty much right under the strap!!! Trouble is by the time they see you you've been in a gown for a while so drawing the straps on would have been a great help. Xxxx

[belinda]

Hope the scan results are good and your Mum can start to get some normality back, we all do, even if we feel we are wading through treacle at times, it's just that it can take some time. And we can fall back for a while if, when, we get new news, setbacks, things to deal with. Have you read this before? From women with secondaries in Australia? http://www.bcna.org.au/sites/default/files/hh_messageofhope.pdf
X

[Sianie]

Thank you belinda for your advise. I have just left my mums this morning and she is near rock bottom and saying she can't cope, she has just had a scan date through the post for the 4 th March which I'm hoping will show some sort of improvement as the bloods have improved loads since starting chemo then maybe she could move forward a little. It's breaking my heart seeing her so sad when she is the one that holds us all together xxx

[belinda]

Glad to hear, apart from the neck pain, the port fitting went well EJ. Expect it will make chemo appointments so much easier without hunting the vein. As soon as my veins revert to type I'm ok to ask. X
Sianie, I muddle along, I guess like everyone. Sometimes ok, sometimes not so good. It's such early days for you both, I was diagnosed stage 4 from the beginning but at anytime it is such a shock to get your head around. I can remember feeling in shock for weeks. And it's getting used to the uncertainty of life after diagnosis. As your Mum is er+ she should find the hormonals work well for her. If you are er+ you can find hormonal treatments just as effective as chemo. Not just for bone mets for soft tissue mets too. Aromasin, didn't work at all for me but Arimidex worked for four years and then after a long gap it worked again for a second time for a further eighteen months. Would it help your Mum to talk to a counsellor, is there a support group for women with secondaries in your area? Keep in touch with us too 🙂 we do understand. It is hard. Take care. X X

[Sianie]

I'm sorry to hear of your dx and wish you well. Please keep in touch xx

[EJ81]

Only since June, so I'm quite a newbie compared to some of the ladies on here. No hormone options for me as I'm triple negative xxx

[Sianie]

How long have you been deslibg with liver mets ? I hope you have plenty of support from you family and that chemo is working this time round ? Have you been on any hormone therapy ? Xx

[EJ81]

Yes, secondaries on my liver. Had EC for three cycles post MX but scan showed it wasn't working so moved onto taxol and avastin. I have abraxane rather than paclitaxol but its the same drug in a different solution. Just about to start cycle six. xxx

[Sianie]

Hi EJ, I can see that you have done your time with taxol, if you don't mind me asking but do you have secondary ? And where are yours ? Xx

[EJ81]

Hi Sianie, sorry your mum is finding it tough. This disease really messes with your head. I'm sure just having you there to talk to is a huge help. xxx

Belinda the port is in! Bit sore for a day or two after but I was out digging in the garden today so not that bad! Worst thing was the theatre was freezing so by the time they'd finished I was really tense which I think made me more sore in my neck than I would have been otherwise!!! Really not bad though. Very true that taxol is hard on your nails, my were painful for weeks then they finally went numb which I was relieved by until they started lifting off!!!

Hope everyone else is muddling on OK xxxxxx

[Sianie]

Hi belinda, at first my mum had sickness, diarrhoea and a very sore mouth but now 10 weeks on she isn't getting any side effects but mentally she isn't coping at all and I'm finding it very hard to know what to say as I don't have any of the answers. How do you cope from day to day ? She was looking forward to coming off the chemo but she is now very worried that the hormone therapy won't work xxx

[belinda]

Hi Sianie, it is one of the listed side effects. It's a tough chemo on the nails too. How is your Mum finding the chemo? I've had two previous chemo's and never felt as tired as I do on this one.
EJ hope the port fitting went well, without problems.
X

[Sianie]

Hi has anyone had darkening of the skin on your hands while on taxol ? Xxx

[Bevlaar]

Strange thing belinda. ..I'm craving greens too - lots of them. Broccoli, sprouts, green beans, cauli. And liver and onions lol!
Good luck with your treatment. You can sure feel the difference when the temperature drops when you have less hair! Even in bed my head feels cold but i haven't lost all my hair...just gone lot thinner so had it clipped shorter too.
Xxxxx

[belinda]

Oh good luck, hope all goes smoothly EJ. Sure my veins will start to revert to type soon. 🙂
My bloods, so far, are holding up. Having pregnancy type cravings with GREENS. Spinach, broccoli, cabbage, dishes of the stuff. Weird but how healthy?!

[EJ81]

I'm booked in to get my port on Wednesday, I'll let you know how it goes. Glad your veins are holding up. Needed some blood taken by out of hours gp the other week and he could not hit a vein and was getting really frustrated as my veins are rubbish!!

[belinda]

Sorry don't know about suitability question Bev. Thank you for all the port feedback, holding out while my veins are cooperating at the moment but watch this space I think..... 🙂
Just had Paclitaxel number 3 and, I think, unless steroid induced calm before storm tomorrow, 😉 it is getting easier. First was the worst, aches pains, weak wobbly legs. Will now be on my one week off of cycle, hooray.
Hair started falling out yesterday so got OH to clipper it off for me. Have chosen, for the first time ever, a free, short hair, almost same colour as mine, naturally black hair, NHS wig. This is second time I have had hair loss, this is my 3rd chemo but first was Capecitabine, kept hair then. I found it less of an issue, for me, this time. I know not everyone does. I have kept my hair short, almost pixie cut style,ever since the first hair loss. If you have beautiful hair, long hair, a fantastic style, look, it must be quite different altogether. Usually wear Buffs and will still do so, will only use the wig when I want a quite coffee and want to blend for a while. At home I usually go bare head. But Buff on at mo as it's so cold today.
Hope everyone on this regime is feeling ok and the treatment is working it's magic on us all. X

[Bevlaar]

I dont think the weekly taxanes like taxol and Paclitaxel would be available for me though? If ive not responded to docetaxol ? xxxxx

[funnyface]

Hi Belinda, My port was placed March 2006! I've never had a problem. I went thru our same day surgery unit. I was put under for it. I didn't like the sound of it being done in the chemo ward. Mine was placed in chest goes up the right jugular. My surgeon said it's the best place for it. Funnyface

[Liz1964]

Hi,
I had weekly taxol, 21 cycles, (before things changed and I'm now on Eribulin). Side effects we're minimal, mainly tiredness on 'chemo day' but nurses said more likely to be pre-treatment than taxol itself. Had a Groshong line fitted early on to make things easier as veins not playing the game, this 'works' intermittently, its difficult to bleed so still having peripheral bloods for tests which is slightly annoying ! I understand you can have taxol for as long as its effective and side effects are manageable. Good luck !

[Bevlaar]

Meant to type "after 3 cycles" not e cycles!

[Bevlaar]

Can anyone tell me if you can have weekly Paclitaxe in the futurel or other similar taxanes if docetaxol (taxotere) failed after e cycles? Xxx

[belinda]

Thanks Liz, yes I have the restless legs, can't keep them still. Better today I think.
X

[lizH]

Yes it will Bev.... I had wobbly legs and really bad aches but it will pass. I also couldn't relax , it was like my legs were really restless. I took a couple of oxynorme painkillers it it helped. Xx

[belinda]

Ha spoke too soon, joint pains and feeling wibbly, wobbly, jelly legs, sure this will pass..soon I hope! 🙂 x

[Barton]

Thanks, Belinda. Hope all goes well for you (and you, EJ). Hugs. Barton.x

[EJ81]

Bet you get yours first - I'm just being a nuisance! Glad it all went well yesterday xxx

[belinda]

Thank you for the info Barton, hope you have a long time on the tablets now and can forget about ports for a very long time to come. X
Good Luck EJ, my port twinnie perhaps. 🙂 X

[EJ81]

I am hoping to get a port fitted mid chemo! Currently have a picc line which is OK but I have just started getting swelling in my arms, face and legs and think swimming might be the answer. I've had the picc for 6 months and have developed allergies to various dressings and would love to be able to shower without wearing a cuff. Think I may have finally persuaded them. xxx

[Barton]

Sorry, forgot to say, this was back in mid 2011 - am on Capecitabine now for secondaries diagnosed last July. Had to have the port removed late 2011 as it needs flushing every 3 or 4 weeks.

[Barton]

Hello, Belinda. I haven't had a port fitted mid chemo , but I did have one fitted on the day of my first chemo. It was marvellous! So little trouble compared to hunting the vein or Hickman lines (not had personal experience of with, but reading others' trials on this forum I can guess). I had mine fitted under local anaesthetic, which was a little uncomfortable, but didn't hurt (the worst bit wad the inserting of the actual local anaesthetic itself - it stings!) I had prepared myself beforehand by watching some videos on Youtube, so I knew more or less what to expect. I know some people can't watch operations, etc, but I found it very useful. If you find it too uncomfortable, the surgeon can give you an injection of (damn - can't remember the name of it!) - tranquiliser (got it!) during the surgery. Good luck with your new treatment. Hugs, Barton.x

[belinda]

Thank you Porkie, just replied to you on the bone mets thread. So sorry to read of your spread but hoping Tamoxifen will give you a longer chemo break.x
Has anyone had a port fitted mid chemo? Have been advised to go for port, bit worried about risk of infection but the regime is 3 weeks on, one off so expect I can fit having it put in around the off week. Has your port been trouble free and was it fitted under local anaesthetic? Had first chemo yesterday and feeling well, early days. 🙂 Thanks. X

[Porkie]

Good luck Belinda!x

[belinda]

Thank you ladies! XXX

[EJ81]

Good luck today xxx

[2catlady]

Belinda,good luck today xxxxx hope this chemo is kind to you but not on the squatters .
Massive hugs coming your way,Helen xxxxxxxxxxx

[nicky08]

Good luck today Belinda and thanks for the messages, will reply later. Remember that weekly Taxol will be far more bearable for the heart than a 3 weekly regime and, like with me, the heart meds will be protecting the heart against effects of the chemo.
Take care
Nicky x

[belinda]

Thanks Liz and EJ, chemo tomorrow so will ask some questions. A little nervous as after my last chemo, Doxorubicin I later developed heart failure. Know this one is a heart friendly chemo but yes definitely feeling nervous, I'm now on heart meds for life. X

[EJ81]

Hi Belinda, I'm awkward so I have had an off protocol version of the same drug so I can't help but I just wanted to wish you luck this week xxxx

[lizH]

Hi belinda

I have steroids too, to take home.

Good luck with the first one. Let's us know how you are.

Liz xx