Weekly taxol

Just thought I’d start a new thread as I think there’s several of us recently started on weekly taxol with/without something else.dippykate? KatherineM?

I had my first dose on Thursday. Played hunt the vein for nearly an hour so will probbaly have to have portocath this week. Thursday and Friday was very speedy and high on steroids…had two good days. Crashed on Saturday and spent all day in bed, and most of yesterday too. ‘Fatigue’ has always been my worse side effect with nearly all chemos but this time I felt less that my head was ‘being messed with’ if anyone knows what I mean. Certianly not as bad as three weekly taxotere.

Reasonable today and have just done a supermarket shop so must be OK (Don’t ask…I do know about on line shopping!)

Head a bit tingly (hair is about 2cm following carboplatin and gemzar), but no tingling or achey joints and no nausea.

Can’t say I relsish feeling c*** every weekend.

My voice is marginally better but far form normal…and the large lumps I can feel still feel large.

Hope other taxol weeklies are doing as OK as poss.

Jane

Hi Jane

I had taxol for primary bc. I had it weekly and compared to FEC I thought it was brilliant. I had no side effects apart from aching limbs and I seem to remember it got easier as it went along.

Good Luck

ALise x

hi Jane

Well not too bad really - I am very encouraged by Alise as all i can see is this getting worse, maybe its not inevitable if it works that is,

Yes I think I know what you mean about head not being messed with, have been tired achey and a little sick but domperidone keeping that down - but not that otherworldy feeling of taxotere. I actually asked them if I could forgo the steroids and they said to give it a try,had it with avastin the first time next time will have it on own. I was very tired yesterday but that followed 2 mile walk, church and lunch out so very full day…getting ready to be knocked down tomorrow. Can’t tell if it is working as I have no palpable lumps or bumps…

Glad your voice is better…really the port will help, I would not be without mine, I can even sleep on it. it makes life much much easier and the recovery time was minimal after it. I found a big difference from the port I had in 2003 to the one I have now it is much much smaller. Oh and btw, I have asked my family to stop calling it chemo, read what you said about that being too matey and cheery- it really resonated with me. Now I say I am off to the hopital.

Hope everyone else doing OK, this seems to be the one to have at the moment.

take care all

Cathy

When I had weekly taxol I found the side-effects varied. Occasionally had a couple of days feeling very tired but the next cycle - perhaps nothing. Aching joints/limbs were also sporadic and usually a couple of days after the treatment. My hair fell out more gradually than on EC (and I hacked most of it off in a fit of pique one night rather than watch my new growth fall out). I know of others who have hung on to their hair during taxol. Did you lose it on taxotere, Jane? Could always ask to try the cold cap.

Jenny

Thanks Alise, Cathy and Jenny.

Never fancied the cold cap…my hair was out on taxotere…but it had already fallen out on AC. My hair seems to fall out even when on chemos*** where hair loss is ‘rare.’

**** I do try Cathy to call it chemotherapy…but takes longer to type!

Looking forward to no side effects next time!

Jane

Having now had 4 taxol but thinking I will probably miss it this week as feels as if it all my wbc has crashed, I seem to be falling into a pattern of having taxol on thursday, being ok on fri and sat and totally crashing on sunday and having awful diarrhoea on a monday. Start crawling out of my hole on tuesday and have a good wednesday.
Hair really falling out but not that noticeable yet. Nails are peeling but did on taxotere and get some flu like and joint aches on sunday/ monday.
Still enjoying eating proper food but gone right off fortisips so don’t know if getting more protein from meat and cheese than fortisips so think I’ve lsot more weight. I don;'t think my digestive system is working at all which is worrying me about what my liver is up to.
Anyway, will contribute later on when next thing happens.
Jane - I’m fed up of beong tired too
Love Kate

Two taxols on and I wasn’t quite so tired this weekend…just slouched in the glorious sunshine in the garden.

I feel high on steroids for half the week, then weirdly disconnected the rest of the week. But apart from xeloda this is so far the easiest of chemos for me (AC, taxotere, vinorilnine, carboplatin, gemzar worse) Half the week high on steroids and the other half weirdly tired and out of it…but not the really awful mind numbing brain distorting ‘fatigue’ I’ve had in the past…just ordinary weariness.

Oh the joys…

Put off potocath last week but too many bruises so got to go for it this week.

Voice still strange but I think my benchmark lump is softer.

Jane

hi jane , over how long did you have these chemos and for how long did each work
thanks "Tracy xx

Hi Tracy

I had AC neo adjuvantly for primary bc. 6 cycles…after 3 my 4cm tumoor had shrunk but after 6 it had grown again.

I had 4 taxotere after surgery (had 23/25 nodes with cnacer despite the AC…generally agreed AC did not work!)

I was NED August 2004-April 2007. Diagnosed with regional (incurable) recurrence…neither surgery nor rads possible.

April- September 2007 6 cycles vinorilbine and xeloda. Tumours significantly reduced

September-November 2007 3 further cycle sof xeloda. tumours grew.

Jan-May 2006 6 cycles carboplatin and germzar (gemzar dose had to be reduced due to low bloods) Tumnours just stayed stable

August 2008 siginifant tumour growth in neck and chest wall. Possible pelvic node tumours.

Taxol and vinroilbine are reckoned to be the two chemos which ‘work’ for me and thats why I’m on taxol now, with a return to vinorilbine my last option outside clinical trials.

My cancer is triple negative. I am a month off 5 year diagnosis and back in 2003 I expected to be dead by now…I will be dead of breast cancer sometime but actually recognise I have been luckier than many given the dire prognosis I originally had. Still hoping for continuing slower than anticipated growth…

Jane

hi jane . and everyone .
well i went to get chemo yesterday seems the taxol is not working as well as it should so they are adding avastin .
i am still in a mess i have become so bloated they checked my tummy said no swollen liver or fluid so think may be gas .
if this taxol does not work and taxotere and andrioymicin did does this mean my cancer may not respond to the weaker chemos do you think ?
i cant stand this anymore . how are you doing kay?
i am so shocked about paula all this stinks dont know how much longer i can take this awful disease .sorry .

Hi Tracy

Yes it stinks stinks stinks.

Different cancers respond to different kinds of chemos sometimes. Have you ever had xeloda? Didn’t work for me but does for many.

Two weeks ago I was in such a pit of despair…know I will return again and again till the cancer overtakes me but I’m not in the pit now. But when cancer shows its presence in scary symptoms its hard not to want to close eyes on it for ever. I don’t know how we stand it…but somehow we do…happy pills help me.

Jane

Hi Tracy,
good luck with the avastin, I believe it works well with taxol. It has done for me and a couple of the other ladies at my hospital.
Today is another of those horribly cruel days somehow we have to carry on, take the drugs that are available and hope for a miracle.
Love Debsxxx

Tracy - sorry taxol not working but great they are going to give you avastin.
I don’t look at other chemos as being weaker - I think it depends on how your cancer responds to the chemo that matters. My best response has been to vineralbine so don’t give up hope.
Kate

Tracy
I am sorry its not doing enough - hopefully the avastin will give an extra umphhh. The avastin Is very easy to tolerate so far- except for the first time they have to run it over an hour and a half separately and then an hour separately, then the third time a half an hour…its every 2 weeks…I am sure they probably told you all this. So far no side effects for me. Oh god I wish they had a test to show what chemos would work to spare us the repeated heatbreak or to find out right up front.

take care
cathy

Oh Tracy, so sorry to hear the taxol not working well for you. As Cathy says, hopefully the avastin will do the trick - know that some people have had very good results on it.

Thinking of you - do let us know how you are doing when you can.

Kay x

there ia someone told me about it a few days ago , its called remission labs but is based in new your , you have to send a sample of blood by courier apparently ( meant new york) and they test it i am looking into it moment but i think it is very expensive .
try type remission labs in see what happens , its a man talking .

Hi all,
Just crashing in on this thread as I have just restarted weekly taxol with fortnightly Avastin. I had 14 treatments of this from March-July and after 2 excellent PET scans my onc. was hoping to give me a chemo break and just keep me on maintenance Avastin but BUPA wouldn’t allow it so I’m back on taxol again but at a 50%dose reduction as a compromise. I’m just 3 weeks in to restarting after 2 months break from July-Sep and I’ve been similar to how a few ladies described. Treatment Wednesday - pretty good and lively Thursday- Friday afternoon and then been getting the most horrendous headaches even migraine tablets won’t shift and feeling like I have the most awful hangover fluey type thing - could barely get up from bed all last Saturday and felt like a very old lady (at 38!!). I would just like to have a decent weekend!! This week they’ve given me extra steroids to take for 4 days after chemo which I’m hoping will help. I can’t remember being this bad in the 14 treatments before but I have had my husband leave in the middle and my decree nisi was awarded this week - I only found out the day after so a lot of stress and worry on top!!Have a week off treatment next week - hooray! They’re giving me one week off in every 4 and I’m likely to be on this regime until at least April when I’ll have been on Avastin a year and Taxol too!!
Am very much looking forward to the weekend after this one as am going on a luxury weekend to London courtesy of the Willow Foundation with a friend. Can’t wait - we’re going to see Billy Elliott and go to a Gordon Ramsey restaurant so hopefully as no chemo that week I should be able to enjoy it!
Take care all. I’ve not been on the site for a while as been having such a tough time coping alone but have been lurking a bit and thinking of you all very much.

Love Anne x

Well I got my 6th weekly taxol and zometa today My wbc and neuts had doubled and so wbc now about 2.8 and neuts 1.8. One of the blood proteins is now only 1 point below normal,but my albumin is low still - no idea what it means and when I asked was told it shows I’m ‘very ill’ so not much help!!! My kidney function is good and only 1 liver test still abnormal (ALT) but they are not worried about that. My skin mets have nearly disappeared and my lump has halved in size and so they are happy for me to continue for upto 18 weeks on taxol so feel much happier today. This gets me up to christmas hopefully which I really wasn’t expecting so hope nothing else happens before now and then.
Anne - you’ve had such a rough time. Cancer seems to wreck so many relationships - it’s so tough on you all when you have that to deal with. I have a husband who is like an angry ostrich - buries his head in the sand but gets so angry with the children and when we’ve discussed it and i;v esiad he’s got to calm down and then the children will follow his example - he refuses and says they’ve got to change first so feel I have 4 kids and not 3!!!
Sorry - meant to say Anne have a fantastic weekend - you really sound like you deserve it. I;m 46 so used the sister charity, Honeyrose foundation and had a fab time having good family photos taken although now Iwish I’d spent the money on going round a race track but I expect wiht my bone mets they would have refused to take me.
Anne - are there any voluntary agencies/counselling that may help you. You sound so brave but you should be able to acces some help. I;ve been under the care of the hospice for 2 years now and it has made such a difference as now get all sorts of help, practical and some finanacial and gives me an opportunity to talk about me and my fears etc.
Hope everyone else is OK and no more bad news - it’s been so sad of late but then that’s why we use this site to rant and cry at bad times and to celebrate the good.
Love to you all
Kate

Kate,thanks so much for your kind words! I know you may cringe to hear it but I feel very humbled to have such kind words from you whose honesty and articulate clarity with which you write of all your toubles for so long have touched me over the last few months. I regularly dip into your blog and so admire your ability to say it like it is.
I am starting to access more help now and have recently returned from my first solo holiday to a holisitic alternative holiday on a Greek island which was wonderful and have made many new friends several of whom I’m in daily touch at the moment which is very supportive.

It’s fab to hear of your improvement on taxol and zometa and to hear you talk of Christmas with hope. That’s really great. Here’s to hoping we both have a decent weekend - we both deserve it hey!

Take care all.

Love,
Anne xx