Hiya,
Is anybody out there on Taxol & Gemcitabine combination?
If so how are you managing with it? What side effects are you having? Is it working for you?
Im due to start it next week and can’t help feeling a bit anxious.
Thanks for reading this X X
I have had 6 cycles of gemcitibine with carboplatin (though not with the taxol.)
Gemcitibine is hard on the bloods and I had low platelets a couple of times. Otherwise my worse side effects as I find on all chemos, was exhaustion.
Are you having the combo weekly or three weekly? Weekly taxol is generally considered easier than three weekly. Taxol can cause nerve pain…tingling of fingers and toes and also cause nails to blacken and fall out. Hair loss is usually inevitable on taxol. (I lost most of mine on gemcitbine and carboplatin though this is supposed to be ‘rare’)
My disease(regional recurrence) was stable at last scan so no improvement but not worse either.
Hope someone else will reply who has done the gemcitibine/taxol combination…it is quite unusual in the UK I think.
best wishes
Jane
Hiya Jane,
Thanks for replying.
The taxol will be done weekly for 2 weeks then a week off, the gemcitabine will be 3 weekly.
Ive just tried Xeloda which is supposed to be tolerated quite well by the majority of people…but not me! It gave me horrible side effects so im very wary of trying something new.
Last year I had 3 EC & 4 Taxotere and tolerated them quite well, im hoping I will with this new chemo.
X X X
Isn’t there anyone out there on this chemo combo???
Hi Julie
I must say I’ve never heard anyone on these forums having taxol and gemcitbine…though think I’ve seen some on the US site bcmets. I think there’s more experimentatuion in US with different combos of chemo and its slowly catching on here.
Xeloda seems to affect a few really badly so hope that was just a blip for you and you tolerate this combo better.
best wishes
Jane
Hi Julie
sorry cant help but just wanted to let you know the cyber waves are working!
I have just come off taxol and I found it really hard it worked brilliantly so was worth it. Been off it 4 weeks and energy etc getting back to normal. I am having avastin every 3 weeks.
Love Debsxxx
Hi Julie
I had Paclitaxol and Gemcitabine on the neo tangol trial in 2006. I found I felt Ok no nausea or anything for2 - 3 days and then I got aches and pains in Joints for 2-3 daysand then picked up again. I did get tingling in fingertips and soles of feet but this wasn’t too bad, I did not lose any finger nails or get any blackness in them. I cannot remember any other side affects I had already lost my hair from having EC previously, I know it was the aching I found the worse thing but that would only last a couple of days. Hope this is helpful. Love Lisa x
Paclitaxol/Gemcitabine were aslo used tgether in the Tango trial in 2004 - I was on this, but not on the arm that got the gemcitabine. A good friend of mine was, and did not seem to experience any more side effects than me (in fact less, she worked throughout except for the odd day off here and there).
Sarah
Julie
I am on Weekly Taxol and Gemcitibine. I have only had one dose so far and its knocked my platelets really low to 22 so i couldnt have week 2 last week, they have to be above 100. I have to go back on monday to see if they have risen and whether i’ll get week 3. They said they may reduce my dose.
So far, the side effects havents been too bad, i have really bad stomach bloating, little nausea, but so far the worst being fatigue. I have slept quite a bit since having the first dose, this could be down to the the low bloods too.
The low platelets have caused me to bruise easily as if i cut/nip myself, i have to be careful as it takes ages to stop bleeding. it took ages to stop last week when i had my bloods taken. They have talked of a platelet transfusion if they have not recovered.
I have been told the effects that i have had are very common, more so with the gemcitibine, so try not to worry if you experience these… i hope i havent scared you, but wanted to tell you of my experience.
i’m also trying the cold cap with this one as i didnt fancy losing my hair for a 3rd time.
hope all goes well and keep me posted on how you are doing…
Jakki
xxxx
I want to say thank you for replying.
Jakki, can I ask what treatments you have had before and how do you compare Taxol/Gem to those treatments?
Last year I had 3 EC quite ok with that then I had 4 Taxotere. The 1st Tax wiped out my blood count as the dose was too strong. I picked up an infection I couldnt fight off so ended up in hospital for a week on I.V antibiotics.
I had horrendous joint aches and pains, my finger tips went mega hypersensative and I couldnt touch anything (not even scratch myself) my tongue swelled, had mouth ulcers, bad diorrhea. Basically every side effect going bar from nausea! I had the dose reduced by 25% and nearly all the side effects went apart from bad guts about day 5 for a couple of days.
I tried Xeloda a couple of weeks ago and that to me was far worse than taxotere! I had side effects that are listed in the “dangerous” list. So, im worried that I will have similar effects I had to Xeloda rather than Taxotere.
Give me Taxotere any day!!!
Julie
X X X X
Julie
Sounds like you and I have had similar treatments… I had E-CMF chemo in 2005, Same as your EC but with Methotrexate and 5 -FU with mine… I found the E part pretty bad with sickness, headaches, hairloss, tummy upset but the CMF part much more do-able…i had a regional recurrence so I then had 6 x Taxotere and like you the first one completeley wiped my bloods into my boots and i aslo spent 8 days in hospital in isolation on an IV drip. I found taxotere the worst chemo ever… i had the severe bone pains, aches, headaches, fatigue nausea, tummmy upset, constipatiom, hair loss again, numb hands and feet and nails that lifted… I was so ill on this chemo, i really thought i wasnt going to make it, they reduced my dose like you by 25%.
Unfortunately for me i went on to develop lung mets so I went on the LEAP trial after that - which was the tykerb/lapatinib/Xeloda access trial which didnt work for me either, i found that one the easiest chemo by far… only a little nausea and fatigue… it was all tablet form too so no nasty needles.
My lung mets had progressed further whilst on the trial so i was then put on vinorelbine, which did halt a few of the mets in my lungs but not enough as its now in my bones and liver.
I am now on weekly taxol and gemcitibine which i have just started…
I’ve also tried hormonals such as tamoxifen, arimidex and zoladex. I was also on herceptin with the xeloda and vinorelbine as i am also HER2+.
I am very scared to say the least as you can see nothing is appearing to be working for me and i know i am running out of treatment options fast. I just pray that this chemo helps me as i very uncomforatble with my liver being so swollen.
hope you dont mind me telling you my side of treatment, i hope i havent scared you… do you mind me asking where your cancer is now?
It would be good to swap experiences of these drugs, i know it certainly helps me.
Take care
love
Jakki
xxx
.
hi julie i was on the taxol gem combo as first part of chemo trial.had a few cramps and restless nights, but not to bad .i found the second part worse to cope with ec combo. hope u do ok and take good care of yourself
maria
Oh Jakki love, my heart goes out to you it really does.
I can imagine how scared you are feeling, I know how scared I feel and I have only just started on the secondary road trip!
I find that night times are the worst for me, I go to bed and my mind goes into overdrive. Takes me hours to get to sleep then when I do I have really bad, dark dreams and wake up panicking. Ive woken up crying on a few occasions.
Im finding it really hard to get my head round this and don’t think I will ever accept the fate that awaits me.
I feel sick to the stomach when I think about it.
I don’t have any children but I have a partner who I love dearly (hate saying “boyfriend” at the age of 38!!) and 2 furry kids (cats!) that I absolutely love to bits and can’t bear the thought that one day I will have to leave them. Makes me feel so sad.
Lets keep our fingers crossed that our treatments work for us, and everyone else out there that is going through this cr*p.
I was told 4 weeks ago that the cancer had spread to my liver after I had a cat scan as I had a deep pain in my side which felt like I had been booted below my ribs. Found out results of bone scan last week that it is also in one of my ribs.
My primary BC was diagnosed end of March 07, started chemo in the April, mastectomy Sept, rads mid Nov finished them beginning of Dec. So, I have had 6 months of pure bliss not having to have any treatments…until now!
I can’t believe I have to go through it again, and not be cured at the end of it?!
Im starting chemo again tomoro and got to admit im pooping myself big time! Im scared to death as ive read that a lot of people have had instant allergic reactions to Taxol and thats why its given slowly…well after my experience with Xeloda im scared to death! To say Xeloda is supposed to be an easy chemo and well tolerated it I didn’t think so.
It made me feel so unwell.
I would like to thank everyone else that has replied to this post, I appreciate you telling me about your experiences with this chemo combo.
I think I will go to bed now as tomorrow is going to be a loooooooong day.
Love to all you lovely brave ladies out there. X X X
Julie
thanks for the reply… well, we certainly sound as though we have the exact same fears, feelings etc… i also find the night times the worse, your mind goes into overdrive doesnt it? I also wake up crying, your not alone there. I also cant seem to accept that this is the fate set out for me, i cant bear to think about what lies ahead and most of the time i try not to, but its there and never goes away…I just feel robbed, robbed of my life and all my plans i had in it. I have so much more that i want to do and i am prepared to fight to do them but at the end of the day i have to hope the treatment is going to work for me… its very hard isn’t it?
I am also going through a divorce at the minute (yes it cant get any worse can it?), my ex husband is not making things easy for me so i have that added pressure. I dont have any children, just a dog who keeps me sane and fills my life with love and cuddles - they are great for that - aren’t they?
I have heard of people having reactions to chemos, but i think its quite rare, i think they have to tell you the worse case scenario to cover themselves, try not to worry too much, they give you steriods to combat that along with piriton i think… we are all different in the way we react, after all - you said you taxotere was easier for you and that one was a hard one for me! Taxol is meant to be easier on the body so hopefully you will find it easier.
I’m off to the hospital today too to get my bloods checked to see if they have recovered from last week (couldnt have it last week due to low platelets), so i will let you know how i get on. Let me know how you get on…
Take care and lets hope these treatments are the ones to kick the cancer where it hurts!
Love Jakki
xxxxxx
P.S - can i ask what area you are being treated in? I’m in Staffordshire.
Hiya Jakki sweetie,
How are you today? Are your platelets behaving themselves this week? I hope they are and that you get your next dose of chemo and can carry on with the cancer butt kicking! :o)
I had mine today and it went ok, no problems which was a huge relief. I will admit that I was really nervous and worried. I went quite woozy headed when I got the injections of steriods, anti-histamine, indegestion stuff then a drip of Ranatidine, but it only lasted about 10 mins or so. I made my partner talk to me when the taxol was being given so that it took my mind off it or else I would have self induced a panic attack and would have thought I was having a reaction!
Only prob I got with the Gemcitibine was it hurting my vein as it was going through. Really painful. It’s still a bit tender now but not too bad.
Lets see what delightful side effects im going to develop, as long as their not like the ones I had on Xeloda I should be ok!
I live in Bradford so am having my treatment at the Bradford Royal Infirmary. The staff are lovely and very chatty which is good cos I can talk the legs off a wooden table!!! :o)
Let me know how your doing hun?
Tootle pip for now… XXXXXXX
Hi Julie
You sound good today - well as good as you can be on chemo and i’m pleased all went well for you… i also was given ranitidine aswell come to think of it… forgot about that one, i went woozy headed too… think its the combination of both drugs on this chemo to be honest… cant recall having tenderness with the veins of these two drugs but have suffered with others… keep an eye on it… do they give you a heat pad to wrap your arm in?
so anyway… i went for my blood tests today and to see the doctor to have my chemo prescribed for tomorrrow… my platelets are certainly on the up… they have gone from 22 to 547! they had to re - do the blood test as they thought it was an incorrect reading. anyway… turns out it isnt and so treatment goes ahead for me tomorrow. I am relieved because i really want this chemo (things must be bad eh?)
anyway… i must dash, need some sleep, havent long got back from my sisters who has just had a baby… he’s the light of my life right now!
ill let you know how things go tomorrow… hope you have a restful night with no major side effects…
speak to you tomorrow petal
Jak
xxxxx
Hiya Jakki,
Im so glad for you that your bloods are on the up…and up up up!!
It must be a relief for you to know that you can continue with your treatment.
I hope all goes well and you dont suffer too much in the next coming weeks.
Keep me updated with how your doing.
(Ps…are you on facebook???)
Keep smiling…
Jools X X X X
Hi Jools
I had my treatment yesterday, all seemed to go well… woke up this morning with a fuzzy head though, going to rest today and not do much.
I’m not on face book, i’m not very good with stuff like that…
let me know how your feeeling after your treatment.
take care
love jakki
xxx
Hiya Jakki,
How are you today? I hope your feeling better than I am?
I was ok until about 4pm ish. Started getting headachey and heavy headed. Also noticed im getting what i can only describe as slight stitch type pains in the liver area and in my right shoulder.
Been keeping a vigilant eye on my temp that keeps wavering between 37.3 and 37.7…so far touch wood it hasn’t gone any higher.
I rang hospital (chemo ward) about an hour ago and described my symptoms to the nurse in charge.
She said I wouldn’t be neutrapenic as I only had the chemo on Monday.
Told me to take 2 paracetamols and see how I go. If I feel unwell during the night to go in, if im ok overnight ive to take my temp in the morning.
I told her im worried to death in case this chemo isn’t suiting me either like the Xeloda… She seems to think that if I was to have problems it would have been as soon as it had been administered.
Im hoping this is just a one off and im not going to have to go through this everytime i have chemo…if they don’t end up taking me off it!!!
I wondered if the dose is just too strong for me? And if so, which one? How can they tell which chemo is causing the problem when you’re having a combo?? I had that problem with Taxotere last year on my 1st one, it was far too strong and it put me in hospital for a week…but that was after the 1st week of being on it not 3 days in!. It totally wiped out my blood count and I had picked up an infection, so had the dose reduced by 25% an did ok after that.
Im sooooooo worried im going to end up not having any treatment at this rate!!
Keeping my fingers crossed that your bearing up better than I am. X X
Hi Jools
Sounds like you and i are suffering the same side effects… i was also headachey, dizzy/giddy yesterday and my left side felt like it had been twisted/hit with a cricket bat. It was very uncomfortable to say the least. My legs were like jelly but at the same time like lead weights… i think thats the Taxol…
I have to say i was quite worried at how poorly i felt yesterday as the day went on, but this morning i have woken up and i do feel so much better, although i can still feel the stich/twisty pain that you describe, and i ache a little.
The nurse is most probably right that your not neutropenic as yet, as your bloods wont have dropped that quick…but your right to keep an eye on your temperature, i have temparture spikes too, i read on cancer backups site that the liver is the biggest heat producing organ in the body and therefore can cause the body temperature to increase/decrease. I also would of thought that if the chemo isnt suiting, you would have had a reaction straight away when they gave it you - thats why i think they give you steroids to avoid that… i hope its just the side effects that we unfotunately have to go through for a few days afterwards. Its a nasty one i think and combined with the gemcitibine which is renowned for crashing platelets it is most certainly is going to make us feel worse for wear. I know my bones seem to throb and ache when my bloods drop - i could tell this on my last one, they did my bloods and i was right so couldnt have treatment. I have to go back on monday to have mine rechecked incase they have crashed again… they said they would consider reducing my dose if thats the point as chemos can be too strong for some people. Please try not to worry… its hard i know… you just want the treatment to attack those nasty cells… they have to be safe and give you the right dosage though. I’m sure it will work it self all out.
I have suffered with neutropenia with all my chemos, its frightening isnt it? i dont like having to go onto isolation in hospital, it doesnt do wonders for the mind sitting there in a room on your own, i just make sure i have lots of DVDs to watch… like my sex and the city’s.
i really hope you are feeling so much better today… do let me know… like i have said before, it certainly helpls me to know that i’m not the only one feeling like this and if i can share my experiences and then helps you then all the better too.
love Jak
xxx