hi due to start taxol on thurs, good to know its underway now, but sooo scared for the side effects, mainly the nausea, which I had badly 10 years ago for my primary treatment.Trying the positive outlook, very hard when you know what lies ahead, still trying to get head round everything, its a nightmare, and I just want to wake up, but I know I have to see it all through. Ive read so many experiences of Taxol, and they all differ, some have littlle nausea, some are bad, so I expect its a wait and see, one question though, if you were very bad, did this last for a long while, any hints or tips on coping might help, Im asking the impossible really, and I know that, just humour me, I think my whole mind set is altering as well, also Im very strung out over it all. Thanks for listening. Tricia xxxx
Hi Zizi
I’ve been having weekly (well, 3 weeks out of 4) Taxol for quite a while and what a pleasant surprise it has been.
Yes, I’ve lost quite a bit (but NOT all) my hair, my feet and fingertips are tingly, but apart from that I just feel a bit second-hand and slightly tired for a lot of the time. The only activity I’ve had to curtail is long walks because of my feet.
I would say that I feel about 90% for 90% of the time. The other 10% I feel a bit worse, but nothing too terrible. Hardly any nausea, but quite a lot of chemo mouth, for which I suck on sugar free sweets.
I need a bit more sleep than usual and tend to feel worse in the mornings, for some reason.
I do find the Taxol suppresses my thirst reflex, so I have to keep remembering to drink plenty, as it certainly helps.
If my regime sounds similar to yours, you too may also not feel uncomfortable. I do hope so!
X
S
Hi Tricia,
I’ve just had three weeks off after ten weekly doses of Taxol. Daft as it might sound my worst week was the 2nd of the three off weeks! That week saw me absolutely shattered all of the time with very sore hands and feet, which have now settled down. The thought of being or feeling sick was my biggest fear too, I can honestly say I didn’t have one day of feeling even a little queasy, probably due to the amount of anti-sickness pills they gave me. My only advice would be to take any anti-sickness medication as instructed by the nurses. The ones I see are very fond of telling you that it’s easier to avoid than stop once it starts.
After expressing my concerns about side effects to my onc before my first dose his words to me were “I think you’ll be pleasantly surprised” … he was right and I hope that will apply to you too.
Claire xx
Hi Tricia
I had 18 weekly taxol and found it very tolerable - i was quite tired towards the end but carried on working - I had tingly fingers and toes a couple of times which put a halt to a couple of treatments - but all in all my onc says ’ i sailed through’ - hope it is the same for you - have you just been diagnosed? sounds like it and If so you must still be in shock - and I know what you mean about wanting to wake up and discover its all a horrible dream - give yourself time - you will get a lot of support here -there are many wonderful women - they have helped me a lot…take care jaynex
whoops, tricia - just remembered I ‘met’ you on another post - would love to put my atrocious memory down to chemo - but sadly it’s just atrocious! Jayne
Taxol for me was so much better than FEC - I did have trouble with low white blood cell count, but I never felt sick once, which was a big thing for me. I even met sombody who threw away her anti-sickness mds on Taxol - I didn’t risk it, though!
best wishes for thursday
Hi ZiZi
I’d be interested to hear how you get on with your first Taxol on Thursday as I have my last EC treatment on Thursday then change over to Taxol. I have mixed feelings like you I think - sometimes I read good posts, others not so good!
Good luck on Thursday.
Love Loopy xx
Thanks to everyone of you,I just hope I fall into the same category as some of you, and have no, or only little nausea, but knowuing me, well Ill see , and report back. But all your posts have been encouraging , and supportive, thanks.I wonder if anyone else on here has any other health issues, as if we need that!!!I do , diagnosed 4 years ago with Rheumatoid Arthritis, another horrible condition, mostly I had it under control,with the use of equally nasty meds,my most succesful being Methotrexate, on a weekly basis, but I was pulled off this due to Lung issues, that was at the beggining of this year, and since then the Rheumatologists have been tinkering around with other meds , but nothing has helped with my joint pains , and stiffness.It was through all these that they saw I had raised liver enzymes, together with my feeling so rough for months, fatigue, pain, and constaNT low grade nausea, and loss of weight, so was sent to Breast clinic among other Depts , to rule things out, and now I have all this on my plate, all so sudden, even though I knew It could always bite back, not sure why Ive gone into all this, , one odd thing though, the Treatment, Ive been told will give me some relief from my Rheumatoid as well, bit of a drastic way to go about it though !!Im already finding the steroids Im on now are helping, will they give me more with my Taxol ??I have a Core biopsy planned for tomorrow, know it will be uncomfortable, but just want it done.One more query, a portocath, do they offer you this, I always have trouble with taking bloods, setting up drips etc, it seems a good way to deal with these problems, although the risk of infection might worry me, but then I know very little about them, other than what Ive read.Anyway thanks to one and all again, hopefully on thursday, or Friday, Ill be well enough to post my experiences. Tricia
Hi Tricia
Gosh you do have a lot on your plate poor love.
You’ll be given more steroids with the Taxol - they seem to give them with all chemo!
As to the portacath - I had one fitted after my first chemo treatment. Like you I have terrible trouble giving blood from my veins - they are tiny - and they spend ages digging around. So straight after my first chemo, I asked my oncologist if I could have something done about it. She suggested a portacath. Some hospitals put it in under sedation and some give you a general. I asked for a general as I’m terrible on anything like that and sedation doesn’t really seem to work with me! I’ve had mine in since early august now and it’s the best thing i could have done! They just pierce it to get the line in, take bloods and give me the chemotherapy. It’s so easy and painless. It comes highly recommended from me. It’s put in under the skin so the risk of infection is virtually zero. You don’t need to flush it out every day (like a hickman line) either. You can’t really see it either, just a slight raised bump.
what sort of biopsy are you having done today? I’ve had several. i wish you luck my love. Just get it done and out of the way. Let me know how you get on. None of this is nice but we have to do it, to get better.
Love Loopy xxx
Thanks to all again, its so good to have support thats really sincere, and helpful.My Core biopsy went just fine, I was numbed up, and can honestly say I felt NOTHING, other than hearing the rather dramatic cklick of the gun, or whatever it was, as I kept my eyes shut!!sO tomorrow is the start of taxol, not looking forward to it, but it has to be, just hope Im not too bad this time tomorrow, will post up as soon as Im able, Im also finding this a hard time to keep positive, and keep crying ata odd moments when alone, have others done this?Im so frightened , and want to be here still this time next year Tricia
Looks like we’re both up for Taxol in the morning, Zizi.
Your first, my 13th!
I hope it goes well; pm me if you like.
It’s OK to be frightened, who wouldn’t be?
Take care
X
S
PS I also have a Portacath and agree with everyting loopy says about them…
Hi well thats the first Taxol over, like the Core Biopsy , which I wqas dreading, it all went well,Ive taken all the antisickness meds as prescribed, and apart from a strange, sort of taste in my mouth yesterday, cant say I feel really nauseas, Im eating etc well, assuming this is partly to do with the Steroids, my idea is to continue with the anti sickness meds til Sat, then cut down on them and chance things.Feel very tired, and a bit achey, but none of this is new as Ive been feeling rubbish for months now, some days just dragging myself around , trying to do all the usual day to day things, aswellas work, Going out with the dog, and some light!! shopping planned this afternoon, a life of leisure , I wish,Hope everyone else is ok today, once Im more settled in to this new ME. Ill try and get more involved thanks for all the incredible support. Love and hugs Triciaxxxxxx
Hi Tricia,
Glad to hear it went well yesterday. The steroids are wonderful (not sure I should say that!). My children call them my “Tigger Juice” because they make me so bouncy for the few days after treatment nd any chubby hamster cheeks that develop I just think of as the free equivalent to Botox … it irons out all of those “laughter” lines!!
As for the strange taste in your mouth, I get that on the day of treatment but it seems to then be masked for a few days and comes back for a few days before the next treatment. If you have a good imagination you can work wonders and make a very boring cup of soup taste like a good roast lunch 
Claire xx
Hi Zizi
Glad to hear the first Taxol went OK.
X
S
MY query today is , my hands feet and mouth feel tingly, not sore, just that odd feeling they tell you about, do others have this, also has anyone had a picc line . they are looking into assessing me next week for this, had it explained, slightly concern ed re infections etc, any advice, or experiences welcome, thanks.Prior to my treatment , due to my Rheumatoid Arthritis, my hands and feet were already giving me probs, with swelling and tingling, and pain, now its only the tingy feeling, so that may be a bad sign for me, hope not, as otherwise Im reasonably OK with the treatment, and just want to get it done. Love, Tricia xxxxx
Hi Tricia
So pleased that your first Taxol went ok.Earlier this year I had 12 weekly doses and tolerated it quite well, I was never sick but my white cells were affected and so I had to have the Lenegrastim injections each time. My biggest problem was the peripheral neuropathy and I still have numb toes six months later. The skin on my heels cracked very badly but I used Udderley smooth cream to keep them moist.I painted my fingernails with a very dark colour to prevent them from lifting but unfortunately one nail did lift from the bed.
Good luck with the treatment and I hope that it is successful for you
Barbara x
Hi , just wondering Barbara, why did you use DARK nail polish, was this to exclude light, or what? Mine are polished , but mainly in pale colours, but any excuse to get more stuff!The tingy feel has go no worse, hope it stays that way, also now they are going to try a Hickman line on Monday, as they assessed me as not suitable for a Picc Line, and apparently next year there should be someone at the Hosp to put in a Portacath, if I need that, I find the fatigue overwhelming, assume hair will come out from now onwards as well, ok with that, madly practicing scarf ideas, but I never quite look like the rather Glam models on the net, so nothings changed, except of course everything has, Im afraid I use black humour against myself , a sort of survival method, hope it doesnt upset anyone, its all self directed, Love Tricia xxxxx
Hi
Yes the dark nail varnish was to keep out the light. I had seen other posts on here where dark colours were best. My skin was also very sensitive to sunlight, not that we will be getting much of that now. My hair began to fall out after the second dose and so I asked my friend to shave the remaining clumps off.
Like you I try to use dark humour and I could never get the hang of wearing scarves and so I mainly wore a wig whenever I went out but I did buy a couple of turbans, one to wear at night in bed because you don’t realize how much heat you lose from your head until you are bald and another one to wear around the house
You will start to feel more tired as the treatment goes on and I felt that for 4 months my life revolved around hospital appointments and blood tests.
Good luck and I hope that you get a great result from the chemo
Barbara x
Well Ive had my Hickman line inserted today, and all is well so far, a completely painless, event, so I worried for nothing, just feel concerned It will become displaced , or something go wrong , but thats only me, the born worrier, has anyone else had one ,hopefully with a good outcome,.as far as the Taxol goes , so far that seems to be OK as well, the corners of my mouth are very dry, but not infected, using various things for this m ost successful I find being Elizabeth Ardens 8 HR Cream, I so hope too that I get a good result from all of this,I find I cant really think beyond that yet, I suppose that comes with time. Thanks for listening.
Triciaxx