Anyone had weekly Taxol?

[EJ81]

Hi Pen,

I won't lie, I have found this chemo very draining but, like Belinda, I have had great results. You really have to pace yourself but you will learn quite quickly when your better days are. I too was told I could keep going so in some ways I'll be looking forward to getting back on it once my break is over. Good luck,

Ellie xxx

[belinda]

Hi Pen, good luck, must admit I have found this chemo horrible, BUT it's worked and I have added complications which added to the mix, heart problems. I had a port fitted a few weeks ago, it's been ok, much easier than hunt the vein. X

[Mrs_Merc]

Hi to all ,

I started weekly Taxol yesterday - 3 weekly treatments with a week off, and then starting cycle again. Also my HER2 status has changed and so also started on Herceptin yesterday - I think that is every 4 weeks though? I don't have a definitive number of cycles - they said they will just keep going and playing it by ear (depending on the regular CT scans & results). I am also vascularly compromised with lyphoedema and inherited tiny veins so I have a portacath being fitted next week too.

I'm guessing this kind of story isn't that uncommon then? I was getting myself into a bit of stew cos they seem to be very concerned and the decisions were made at the speed of light after I was admitted in late Feb, mets found and then the jaundice set in last week.

Looking back, my orginal treatment was only 3 years ago - It seems so much longer ago!

  Is Taxol kind to us but still able to nuke these nasties?

Good luck to all here,

Pen xx

[EJ81]

Jo I'm glad its working well for you and that you have a good clear plan of treatment xxx

[Mitch23]

Hi all

Thanks for the replies.

Ej81 - have had 10 sessions ( onto 4 th cycle). Bloods are excellent. And last scan showed very good reduction in size of lesions. However, same thing happened with capecitabine so am reluctant to celebrate to much. My onc was very positive when I saw him on tues and is sure that this will work which I find is quite unusual for oncs to commit themselves in any way! So we will wait for the next scan! I did ask what the next step was and he said hormone blockers. I am also going to have ovary removal as I am pre-menopausal.
Hugs jo xx

[belinda]

Hi Nicky, have a good break. And I hope you have a fun time at Longleat EJ.
Must admit, I could hardly sleep last night, it felt like the night before Christmas, just so excited, it's lovely to have a little break as I have found this one such a toughie. Feel I've been living in a chemo fog.

[nicky08]

Hi ladies
Just wanted to say that it does sound a very tiring and all consuming chemo! I finished Taxotere in December and it's taken a while to get over that one which was over 6 cycles every 3 weeks. Hope you all get good results.
Belinda, thinking of you and glad to read you have got a break with the chemo, sounds like you needed it. Look after yourself and will be in touch. Just off on another quick break in between scans, grabbing the opportunity whilst we can.
Take care
Nicky x

[EJ81]

Jo are you getting good results so far? Xxx

[EJ81]

Think I was on same number initially too 6 cycles = 18 doses? 

Yes total pain about the port! I hope yours is behaving Belinda. Gutted about mine as it was such a good solution for me. I hope you're getting to make the most of your break. We're planning a trip to Longleat! Xxx

[belinda]

Sorry Jo, meant to add I am on the same number of cycles as you.

[belinda]

Ah bad luck about your port EJ but enjoy the break. In answer to break questions Hi Jo, just to say I had number 12 last week and have found it quite a debilitating chemo. A few weeks ago I had a blood transfusion as Hb was low. But I am now on a 2 month break and taking Femara....see how that goes as to when I'm back on the Taxol. I was more than ready for the chemo break and have been assured it's ok to take chemo breaks with this treatment and then return to.
X

[EJ81]

Hi Jo I'm on taxol (actually abraxane as taxol really didn't like me but its the same thing) and avastin. I was told I could stay on it indefinitely if it continued to work. Unfortunately after about 7 cycles my port site became infected so I've been forced to take a proper break but I'm hoping to get back on it in about six weeks. Bit nervous about stopping as it was working well but it is nice to have some relief from the side effects.

My onc also said she was happy for me to have an extra week between cycles now and then for holidays. I was on three weeks on one week off. 

I hope you are feeling well on it and getting good results,

Ellie xxx

[Mitch23]

Hi all

I'm currently doing taxol at the mo. Have done 9 and have another 9 left. I Was wondering how long people are currently kept on this and what treatment they went onto next? I know everyone has different plans but wondered what was the longest anyone had stayed on taxol and wether they had a break at any point
Love jo x

[Barton]

Chris, so sorry to hear your news. I can only echo what everyone else has said, and wish you comfort and peace. All best wishes. Barton.x

[LemonDrizzle]

Gutted to hear your news Chris - sending love to you and your family x

[funnyface]

I'm so sorry Chris. Peace be with you and your family. Hugs, Funnyface

[nicky08]

Hi Chris
I have been away for the past few days but have now seen there are several ladies who have recently had bad news, none so more than you. I am so sorry to read that this horrible disease has spread in such an uncontrollable way. We have travelled this path for quite a while now and I have always appreciated your posts and support. I can only offer you my support now and hope that you are in as comfortable place as is possible and that you find peace. I send my heartfelt wishes to you, your family and friends at what is such a difficult time. Take care.
Nicky x

[roxy12]

Chris, I can only say what others have said, I am so sorry. What an absolute shock. I hope you have no pain and are as comfortable as is possible. Sending you all my love. Sheila xxx

[2catlady]

Oh,Chris,I don't know what to say. God I hate this dammed disease.
I'm sending you all my love,you have always been an inspiration and a cyber sister to every one on here and we all think the world of you.
Massive hugs to a wonderful,lovely lady,Helen xxxxxx

[pam01]

I am so sorry to hear this......wishing you a pain-free and peaceful time. Much love to you and your family.xx

[Bevlaar]

Chris..so very very sorry. All i can do is send love and hope you are comfortable. This crappy disease is beyond words xxxxxx

[Chocolates]

Chris, thinking of you at this difficult time. I hope that you are pain free and have yur close family around you. Huge hugs lovely lady xxxxx

[Porkie]

Chris I am so sorry. Thinking of you and all your loved ones at this difficult time and I do hope you are out of pain.xx

[EJ81]

Chris, just the worst news. Sending lots of love to you and your family xxx

[belinda]

Oh Chris I am so, so very sorry to hear this. Sending love and strength to you and your family, I hope you are as pain free as possible. With Much Love, Belinda. X

[Steris]

Hi ladies,

Sorry I've got to leave you, On Tuesday evening I had a seize with no warning. I now have brain mets outlining the brain and lungs. Unfortunately they can't do anything to for me. I'm at the hospice and may have about 4 weeks.
I'm really state but early days.
Thank you for your advice and wish you all well.
Sending you love and wish you well in this treatment.
Chris xxx

[belinda]

Great to hear chemo is working EJ. I will ask, next Onc appointment, about this being a maintainence chemo, perhaps whatever our bc this is a chemo we can return to, after long breaks, short breaks.
Well the iron intake worked! My bloods did not dip, for the first time, this week, still low, 10.5 but steady. And Rice Krispies have tokens to collect at the moment. 🙂
Onwards all, this one is a toughie but we will get there. X

[EJ81]

Hi Sianie, yes I am triple negative so its chemo, chemo, or chemo for me! Holiday was lovely thanks. Amazing how much more energy I had after an extra week off! xxx

[Sianie]

Hi EJ81, just being noisy but are you triple negative ? As my mum has been told that she has to stop after 18 weekly taxol cause it is harmful after that amount then she will go on a hormone drug. I've read a few ladies are on constant chemo so just wondering is it because that is the only treatment for them xxx hope you enjoyed your holiday xxx

[EJ81]

Latest scan showed things are still going in the right direction. Some Mets have gone and others hard to see! Tiny bit alarming as I didn't realise I had quite so many but at least they are getting zapped. Have been told again that I can continue on this chemo for as long as it is working. Mixed blessing due to the side effects but worth it for the good news.
Belinda I've just put in my order for the magic tesco van and added some boxes of rice krispies - thank you for sharing your secret.
I hope this finds everyone as well as can be. I'm off to bed - wild times! xxx

[belinda]

Oh that's so debilitating Chris. Do you have many pre meds? I have anti sickness, something, forgotten the name, to line the stomach infused along with Piriton and steroids. If anything I have the opposite, slight tendency to constipation. Worth asking about your pre meds being changed or tweaked?
I might be counting my chickens early but was going to share my secret weapon against ongoing anaemia problems. For the last couple of weeks I have felt exhausted and have been trying to boost my iron intake, to avoid a transfusion. Along with steaks, greens, dried fruits I read Rice Krispies are full of iron and a glass of orange juice, Vit C helps the iron to be absorbed. Tea, coffee taken with food depletes iron. Have to say I feel much, much better, so far, this week than I did on my week off chemo. A bowl of RK's in the morning and another last thing at night with my OJ. Not fine dining but if I feel more normal hooray.
Hope you had a good break EJ. Love to all. X

[EJ81]

Hi Chris sorry to hear you've been feeling rough. I'm always so relieved to get to my week off but first time round I didn't know about it either! I've just had an extra week off to go on holiday while I had some energy and I would definitely recommend it. I'd done 3 cycles of EC followed by 6 cycles of taxol and avastin so I figured I was probably toxic enough to carry me through an extra week!

I hope you get to make the most of your week off. I like to plan stuff in for it now I know it's coming. xxx

[Steris]

Hi ladies,

Hope you're all coping with the weekly tax.

It's been a bit of a journey last week. The 3rd cycle I was violently sick and went to the hospital to get checked out. I made the decision to have the chemo but it was the second week I had chronic the big D. I took Imodium as it was so debilitating. I was absolutely exhausted from it all. Ids this a common side effect?

Today I looked in my chemo book today and I'm not due until next week. No one said that I was 3 on and one off. I feel elated just to have a break. It's a shame no one told me though. I'm hoping that I pick up and get some energy back.

Take care everyone
Love
Chris x

[EJ81]

Its tough isn't it. I find some cycles harder than others. On my week off this week so hoping to pick up soon. Gave up and went to bed at 8 last night and that's a week on from the last dose!

[belinda]

Chris it really does make the muscles hurt to start with, I found this got better after the initial sessions. Must admit I feel quite low and rubbish on this one. Have a good day on steroids but hardly pick up before next session. Low haemoglobin, drippy nose, cough, jelly legs, no energy, foggy brain. Let's hope it's bashing the mets along with all the other bits of us. X
EJ have a good holiday! X

[Steris]

I had the most awful day yesterday. Pain and so bad that I couldn't get it under control until the evening. Very tearful and my mood was so low. I'm not usually a so depressed but the pain just took over I guess.

I managed to get to sleep at 2.30am this morning and I actually slept. Although tired I feel a lot better than yesterday. I'm hoping that I get at least one good day before chemo restarts tomorrow.

Is there a pattern to this chemo? I know it's early says and chemo nurse said at the assessment yesterday that it maybe a flare up and it affects the muscles. Just hoping it the first se and not every time?

Hope you're all coping with the weekly tax.

Love
Chris xxx

[geordiex]

I lost my finger and toe nails on paclitaxol I just put elastoplasts on them to stop them catching and wore cotton gloves when getting washed ,still have neuropathy 2 yrs on but it worked and did the trick ,and had to stop due to the neuropathy kept falling over xx

[EJ81]

I've just finished my 6th cycle of 3 weeks on, 1 week off and, providing the recent scan I had is good I will be continuing with it. Having 2 weeks off this time so we can squeeze in a holiday so I've told onc not to get in touch with any scan results before we go! Will deal with it all, good or bad, when I get back. I am shattered though!
Nicky I'm afraid my nails got dark patches and were really sore before they started lifting. Struggling with infections under them at the moment but no one seems to know what the best thing to do is - I don't want to cut them right off unless I really have to!

[Sianie]

Hi all just reading through a few comments and can see that ladies have been in continuous chemo for a long time, my mum onc said that she could only be on taxol for 18 weeks then they have to give the body a rest. Has anyone else heard this please ? Xxx

[Steris]

Thank you Belinda,

My oncologist called me a chemo veteran last time I seen her.  I've been on 3 fec & 3 Tax, Capectibine and eribulin so this is the fourth one I've been on.

Most chemo's last about a year for me before they fail which isn't that long.  The worse for me by far has been the eribulin which was 2 on and one off.  I never seem to recover plus I had to take FSG injections because of the white blood count which is worrying me to say the least.  I know this is very early days and I'm hoping to pick up a bit but feeling very negative and I'm thinking its because I'm feeling so tired all the time.

I'm trying to pick myself up so one step at a time.  WIll have to think of the liver and bacon but I've not got much of an appetite because of the liver problems I've had.

Take care and I do hope you pick up soon,

Love

Chris xxx 

[belinda]

Hi Chris, I was on three weekly and then one off but was told Friday Onc would prefer 6 weekly and one off.
My bloods are struggling, reds, so eating all iron under the sun but pretty exhausted and not sure how much diet can help. Have had Doxorubicin and Capecitabine and found them much more doable than this one.
Hope the chemo works well for you. X

[Steris]

Hi Ladies,

I started weekly taxol last Thursday and I'm feeling quite exhausted.  Having said that I was on Eribulin for nearly 8 months and that was pretty bad on the fatigue front so back to back chemo isn't good and hard to gauge with the side effects.

I don't know wheather anyone had suffered any pain around the ankle?  I've been told that it maybe neuropathy caused by the chemo.   It's gone off now but it was hard to weight bare.  I'm on morphine, pregamblin and paracetamol which I'm sure has helped just wondering if anyone else has had similar se's?

I've already had docetaxol first time round which knocked me out for 48 hours and took me a week to get over it.  I'm hoping this will be kinder and I suppose it gets accummulative.  I've just been told I'm on weekly as long as the bloods hold up. Did your oncologist decide which regrime you were on before hand?

Love

Chris xxx

[belinda]

Same here Nicky, not a nail polish lady. Keeping nails short and so far they're ok. I was actually told weekly is better, kinder than 3 weekly so sure the 3 weekly Tax was no picnic. Wish there was a pill like a steroid but safe and lovely to take every day! X

[belinda]

Feeling so full of beans today, wish I could bottle this as I know it's still the steroids from yesterday. 🙂
Had a port fitted today, all went smoothly and veins were getting troublesome so one to cross off the list. Also saw Onc yesterday and chemo is now beginning to kick in and he wants to see me again after next 6. My haemoglobin levels are 9 at the moment so still ok for chemo but trying to get the extra iron up through diet. Love my greens but might have to go for the liver and onions... 😛 as read meat is more effective than greens. Hope my fellow Taxol friends are all ok, not too exhausted! X

[nicky08]

Hi ladies

Although I didn't have weekly taxol I have just finished 3 weekly Taxotere (docetaxel) and what you are describing is exactly what happened to me.  I am sure it is coming down off the steroid high and I did try to gradually reduce the tablets so I didn't stop taking them abruptly.  To be honest it didn't make much difference.  Having had the chemo on a Friday I was OK for the weekend then pretty much wrote off Monday and Tuesday. Luckily for me I wasn't then having another infusion so I do sympathise with you ladies on the weekly regime, it must be exhausting.

Also noting on here there was a dicsussion about nails.  I decided not to paint mine as I don't normally wear any nail polish so it would have looked odd to me to have black or dark nails.  After 6 Tax I have had some discolouration which showed up towards the end of the chemo but strangely they are going black/dark from the mid nail upwards, not what I expected! They start where I'd imagine the chemo started affecting them so towards the nail bed/cuticle they are quite nice and pink but from the mid nail to the tip they are discoloured and one has lifetd with another 2 probably going to do the same.  However all the others are OK. Same thing has happened to my toenails, which I do paint, so my two big toe nails are discoloured but no others. However starting chemo straight away after being on Capecitabine for 18 months probably didn't help them in the first place.

Wishing you all the best and hoping that Taxol kicks the uggers into touch.

Nicky x

[belinda]

Same here Jo. I have my chemo Friday, feel great Saturday and until around Sunday lunchtime. Monday feel out of it, in a fog, frail, not much difference Tuesday. I'm three weeks on, one week off. Anyone not having a break you are a star, I really don't know how you do it. Hope it's working it's taxol magic on us all.
X

[Mitch23]

Hi belinda
I know. It's supposed to be well tolerated which i am doing ok on it just like you say shattered! Also, I don't know about you but I have my treatment on a wed and in the Friday and Saturday am soooo down. I know the steroids gave a lot to do with it but that doesn't seem to stop me feeling rubbish!
Hope all are well
Jo x

[Sianie]

Sorry ment to say 'affects' your sight x

[Sianie]

Hi does anyone find that the taxol after your sight ? X