Weekly Taxol for Stage 4

kt1966

Wow. Congratulations Shazza! Yay for stable & for taxol 100.

Oral form sounds good! I've never heard of it, but if it means no nasty solvents that could be better than IV....

It was good to see you at the forum on Saturday. Would be great if we could get the drugs that Australia & the states have available too.

mutherflush

Hi everyone. I log jn to site evry day to see how you brave ladies are doing. Ive posted kn other topics in the past.

I was dx with mets to liver, lungs, bones and lymph in April 2013. Since then I have worked my way through all the chemo and hormone therapies available to me. I was told jn Feb this year that there were no other options available and was asked to go on a clinincal trial. Everything was great until they found mets in my eyes. Because the new drug was known to affect the retina I had to stop.

However after a long chat with my Onc we decided to try weekly Taxol. Normally given as a first line for stage IV. No guarantees. Well I have just had the results of my first CT scan after 2cycles. I have shrinkage in liverand my tumour markers have dropped from over 2000 to 1100. I ham tolerating it really well. Fatigue is my main problem but it only lasts for a couple of days after infusion.

Just wanted to let you know that we cant give up. We must keep positive.

I have gained strength and knowledge from this site but above all it has made me aware that however bad it seems there you are ready to help and support all of us who despair from time to time.

Thank you all so much and I wish you all positive resjlts and pain free days.

kt1966

Wow. I'm glad taxol is working so well for you motherflush.

Thanks for letting us know. Sounds like you've been thru a lot, and thru a lot of chemos too. Great to know it's worthwhile to keep trying & find the right one.

I'm finding the fatigue really hard too. It's a bit of a vicious cycle - the more tired you are, the less you do and the less you do the more tired you are because you're losing fitness & muscle. I'm trying to tell myself to do more walking & generally, but some days it's just too hard.

I'm hoping to stay on taxol for a while, here in NZ we don't have access to halaven and some other drugs (unless we pay full price- beyond exorbitant!)

I hope it continues to kick that cancer out!

mutherflush

Hi kt169. I try to do some excersice before lunch, even if its only climbing the stairs a few times. This helps with bone density and muscle tone. I try to swim once a week. No pressure on joints. Most afternoons I take a nap because I dont sleep well through the night. Taxol takes its toll on white cells and I find 2kiwi fruits per day helps. The vitamin c content in kiwi is really high. My liver and kidney function has always been good despite the mets.I have lost all my hair again. Each time it grows back a different colour. Cant wait for the next one. Maybe red and curly. Its the only one left now.

Hope Taxol continues to work for you too.

Anonymous

Just jumping in here. I just finished my third full cylce, so have had 9 doses. It seems like I have been on this forever. I find it pretty easy, have had a bit of toe numbness but no big deal. I had to shave my head after 3 doses but it started to grow back right away. Its still too short to go topless but is about 1cm long. Has anyone else had their hair grow back during treatment? I have CT scan this week so will see if it is working. Scanxiety has started.

kt1966

My hair is growing back, if you can call white fluff hair! It'll be a while before I can go bare too.

Besides the fatigue, I've had funky loose fingernails but antibiotics have helped there. Still lifted a bit, but hopefully won't worsen.

I hope your scan goes ok thisisme. I have one on Friday.

So, motherflush, I wonder what colour your hair will be this time Good idea about kiwi fruit.

One day at a time I reckon, & just do the best you can for that day. Take care

ibcmets

I'm also on weekly taxol. I have 1 week off a month. They had to lower my dosage as I crashed for 3 weeks. I was so exhausted I slept all day & night. I lost my hair on day 14. I'll be on this till it does not work anymore. This is my 2nd month on it. I'm on B6 & B12 for neuropathy & went on Juice Plus vitamins for energy which are helping. I got a new port as my veins are shot.

Hope this works for us for a long time. I have not had scans yet, but went on this after hormonals were not working anymore & I got brain mets & liver mets.

Terri

kt1966

Is this your first chemo, ibc? I see you've been IV for 6 years, well done. I hope to be around at least that long too!

I hope the taxol is dealing to the brain & liver mets. Do you know what dosage had you sleeping around the clock? I'm glad they've dropped it! Mines been lowered a couple of times now due to my fingernails.

This is my 2nd chemo while stage IV,I progressed (pleural effusion) while on xeloda. So I too hope we get a long run on taxol. Wouldn't it be great if we can be exceptional responders & be here for years & years

(& yes, thank goodness for ports!)

Andkeepgoing

Hello everyone!  Another lurker here.  This forum has helped me a lot over the past few months.  I am finally coming out of the woodwork.    I just finished my 21st round of Taxol on Tuesday, still on pre-meds due to an allergic reaction way back on the 2nd infusion...so, am still on a bit of a steroid-high today.    My previous two scans showed a reduction in my liver mets ('partial response'); the latest scan showed a slight reduction - only 1-2 mm reduction in the mets since the previous scan 6 weeks prior.  My question to anyone on this forum: have you had a similar situation where Taxol shrunk the mets by 5-7mm the first couple of scans, then petered off to 1-2mm, but still kept working? (or not - pls be honest).  Hoping everyone is still doing well - it has gotten a bit quiet on here lately.  Off to make use of the remainder of my steroid high...

kt1966

Hi Andkeeping, I can't really answer your question, but wanted to say hi & good on you for coming out of 'lurking'

My scans have mostly shown 'stable' in the lungs or healing bone mets, so I'm still going on taxol. I guess I won't stop until I have progression or the side effects become too much.

I'm on my 'crash' day, Friday after having taxol on Wednesday. Looks like you started taxol not long after me. I know there are people who have been on it for 2 or more years. Hoping it works a long time for us too.

Andkeepgoing

Thanks kt1966. I am hoping for a long run as well...would be nice if I started getting at least one year out of my drugs! I had to laugh when I saw my 'Joined' date: April 2012?!? Well, I joined shortly after I started chemo when I was still stage 1, but didn't really start using this site until a few months ago.

ShazzaKelly

Hi Andkeeping I've been on taxol for 2 years. It greatly reduced my tumours after the first 3 month scan, reduced them a little more the next and has basically kept me stable since then with just a little active bone and lung stuff going on.

I have found that long term it is a very doable chemo and I'm very grateful to it but it does make me very tired. One more infusion for me no 105 then I'm taking a break till mid February so I can enjoy the New Zealand summer then back on to it again. Possibly doing the oral taxol trial.

Hope everyone out there is doing well.

Shazza

ibcmets

kt1966,

This is my 2nd time on chemo. First time in 2009 with inflammatory bc & bone mets. I did TAC for 8 months. Just had my first PET followup today after this recurrence. Hope taxol is working. It is tiring to do every week.

Terri

Andkeepgoing

105 Shazza! Wow! I hope you have a great summer, and enjoy your time off!

kt1966

I hope you get great scan results ibcmets! When do you get them back?

I hope it's working too, that way a bit of tiredness is well worth it.

I'm going to ask for next Wednesday off taxol so I can enjoy Christmas a bit more! Being Friday it would be my crash day, so I'm hoping I'll be able to feel less tired & ready to celebrate.

mutherflush

Hi everyone. I visit the site daily and very rarely post. I just wanted to share this info with everyone. In August i was told I had exhausted all options. Hormone and AI therapies had not worked and all chemo options were closec. I had evev been on a clinical trial and had to stoo because new lesions werd found in my eyes.

Hoever I had read on the site about weekly Taxol not realising it was a first line therapy for stage VI. I asked my oncologist if I could give it a try. It had been over three years since I had been on a taxane based chemo. She agreed adding that there were no guarantees t would work. After 2 cycles I had ct scan and TMs done. Scan showed shrinkage in liver mets and TMs were down by 1000. I have just had results of secon TM blood test and they are down again by 300 and liver tests are normal. I am due for scan on 18th Jan 2016. Hoping for more shrinkage. Original TMs were over 2000 and now under 700. SEs have been tolerable so far but fingers and toes are sore and dry. Haif has gone but eyelashes are still there.

Just wanted you all to know that if I had not visited this site I may not have had this chance. The info on these sites is just amazing. The support incredible. Thank you all for just being there.

ShetlandPony

Very good news, Mutherflush. I'm so glad you got to give Taxol a try! (I'm a big fan myself.) I guess your onc learned something.

kt1966

That's great, Mutherflush.

For those of you who have been on taxol long term- when does your hair eventually return properly- or does it ever?! Mine is finally returning as grey/white whispy fluff, about an inch long. Will it become proper hair?

I know it's not important really, but I'm so tired of wearing scarves & it's coming into summer now! I can't wait till I don't have to wear anything....

Andkeepgoing

Very good news Mutherflush! That is a Christmas present in itself.

Ha! kt1966! I was thinking the same thing the past few days. I also have the 1" white fluff. It kind of snuck up on me. It seems to be multiplying; i.e. more fuzzy fluff is growing - or I am just imagining it. I am tempted to dye it a bright red, or blue, or purple, just for the fun of it. Then, I figured I would probably end up dying my scalp more than my hair. I wear a wig outside anyways. Since it is 'winter' here in Canada, I am okay with the extra coverage - 'winter', as it is supposed to be in the minus temperatures with snow, yet it has been unseasonably warm this past month where I am - tomorrow 11C, 15C on the 24th (Whoop! I just might pull out my shorts!), no snow, grass is actually still green. But, I know how you feel, as I was getting sick of the hot summer days and muggy 40C humidexes up here in the summer. Yuck.

mutherflush

Hi Andkeepgoing.

My hair ix also white and fluffy but I have to trim my eyelashes. They are growing like crazy. The eye oncologist said it was the gel I use foe my dry eyes. He said some men have the same problem.

Almost christmas here in the UK and temp is high, about 13deg. Still have rases and other flowers in the garden. Seems really wierd not to have snow or frost.

Wishing you all good results for the New Year

Andkeepgoing

Wow mutherflush, that must be something to have to trim your eyelashes. Is this a prescription drug, or one you bought in the pharmacy? I would be tempted to try it, given my eyelashes are falling out. My eyes water when it is cool outside, so the eyeliner smudges. Would be tempted to try it on my eyebrows, too, to see if they filled in again. Probably a pipe dream, but just had to ask.

kt1966

Morning (here anyway) ladies,

Wow about the eyelashes for sure! I only have 3 long ones and some barely there (1mm) ones. Sounds like I could use your eye gel, Mutherflush! Please tell

Andkeepgoing, my family reckon I should dye my 'hair' too, but like you I think my scalp would get dyed the most. It's too sparse anyway, so even if it was another colour my scalp would still be visible in parts (would the colour be enough disguise...)

mutherflush

Hi kt1966 and keepgoing. You can buy the gel over the counter at most chemists. Called Lacrilube. Been tempted to try it on my head but would need a loads. I do put it on eyebrows and they are still visible. Just a little pencil to bring out the colour.

Spending xmas with son,daughter,5grsndchildre and four great grandchildren. My daughter is feeding 19 of us xmas day. I have been given an extra weeks break so Im really looking forward to it. Start next cycle on new years eve and its my birthday new years day. Fortunately i am ok the day after treatment.

I wish you all a painfree happy holiday.

ShazzaKelly

hi guys i wish I could answer the question about when hair comes in properly but I really can't remember. I think it was about 9 months to a year. It really took off when I had a big dose reduction after about a year in. My hair grew "everywhere" after that except my eyebrows which are still non existent. My hair was very dark before chemo but it came back white and while it's probably more grey now my hairdresser doesn't think it will change much more

I was advised by the oncology nurse not to dye my hair while on chemo as it could cause it to fall out again. Having said that I'm on a 6 week break so I've decided to have a colour done after Xmas.

I'm obsolutely exhausted in the lead up to Christmas. I've now got 5 days off work thankfully.

Hope everyone is doing well and you all have a fabulous Christmas and a happy New Years

Andkeepgoing

That sounds like a wonderful time mutherflush! I am off to visit family over Christmas and have taken time off from work until after New Year's. Have a Happy Birthday if I am not on the site until after New Year's!

ShazzaKelly, I remember my chemo nurse saying the same thing about not dying hair while on chemo the first time I had chemo. I waited the recommended time before I had my hair coloured. I think it also had to do with allowing the hair and/or hair follicles to become stronger, as I noticed my hair looked very fine for the first inch, then thicker after that.

Merry Christmas and Happy New Year to everyone.

Brook838

Just had my second dose of weekly Taxol yesterday. So far my only side effects are fatigue---but I was tired before I even started so it's hard to know if it's the Taxol. My question is about hair. My dr said to expect "thinning" but it sounds like most people are completely losing their hair? Ugh, not looking forward to that at all. I'm on a three week on, one week off schedule.

Beth

mutherflush

Hi Brook838. I lost all my hair after one full cycle. Came off all at once. Another side effdct for me has been fingernails and toenails verh sore and discoloured. After five cycles the soreness hss subsided a lot but nails on toes have almost disappeared and fjngefnails look a bit yuckie.

I have my scan in 2weeks but Taxol has been good for me up to now with TMs falling and shrinkage at last scan after only 2 cycles.

Hoping it works for a long time foryou, me and all the sisters on this site.

Andkeepgoing

Hi Brook838,

I eventually 'noticeabley' lost my hair, at around the 12th infusion.  I was on a weekly, no break, schedule.  Everyone is different, per my onc and nurses; therefore, you will have to wait and see - hard, I know, but you never know!  It probably depends to a certain degree on how many infusions you have, and how much hair you have/how thick it is.  I read one woman's comment online when I started Taxol that hers had just thinned - she has very thick hair, so the thinning was just noticeable to her, not her friends or family.  I have fine hair, but lots of it.  I started off shedding a bit, then looked like Beetlejuice, then eventually just had a few wisps left.  Mind you, at around infusion #20, I suspected my hair was starting to regrow, which can - thought I saw white baby fluff on my head, and for sure, my hair started regrowing 'below the belt line'. Ugh, really?!  Was not noticeable, as everything started coming in silver/white, just caught them in the light, and when I brushed my hand against the bottom of my leg once.  With that said, it appears Taxol stopped working for me after 21 infusions (Boo!), as I had 'symptomatic progression'.  My previous scans showed 'significant' response, then became stable, now have moved on to Xeloda.  Wishing everyone here a lengthy time on Taxol - I will be dropping off this board.  Bye!

MaineRottweilers

I am starting weekly Taxol tomorrow. I am coming off two doses of Taxotere which took me so low that i have been unable to work. I took a short break over Christmas to recover from pneumonia and rebound from the effects of Taxotere. I had great response to the Taxotere, even on two doses but QoL was just not there. I am feeling quite a lot better and ready to pick up the fight. I'm nervous that I won't tolerate Taxol any better than the Taxotere (which I did fine with at initial Dx), especially since it seems to be working so well. Reading back through to see what I can expect for SEs but if you have a quick run down, that would be great. Are all Taxanes the same, efficacy and SEs? Hoping that this will do the trick, not so happy about the weekly investment of time in the chair though....

kt1966

Hi all,

Welcome Brooke and Maine. I just had taxol number 28 yesterday (should have been 30 but I had a week off & a dose reduction for my fingernails, and a week off before Christmas so that I wouldn't be so tired)

Mutherflush, I ended up having a course of antibiotics to treat my funky fingernails- so while they've lifted a bit, they have improved & I won't lose them.

When xeloda failed for me I had the choice between taxol or taxotere. The weekly chair visits for taxol are a bind, but I had heard that taxotere was harder to do so that swayed my decision. Sometimes when I'm sick of the commute to chemo I query my sanity- but overall I think it's a doable regimen.

My hair is growing back too- very whispy & grey/white and thin, you can easily see my scalp thru it, with a receding hairline. Attractive, not! It'll be scarves and hats for me still

The worst SE for me is the fatigue, just have to pace myself. The other is a bit of neuropathy in my fingers & toes, I feel a bit of a fumble fingers sometimes and have numbness & tingling.

I'm hoping to stay on taxol for a long time yet. I will try & have the occasional short break from it, like in February when I go on holiday for a week (I'm on weekly taxol with no weeks off).

I hope you go well on it too.

Andkeepgoing, I'm sorry taxol stopped working for you. I hope you get a great run on xeloda. I found it quite doable too when I was on it