Does Taxol work? : I have been to see my... - My Ovacome

My Ovacome

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Does Taxol work?

Gemimablackvelvet profile image

I have been to see my oncologist today to discuss starting Taxol. I was assured this may help hold back my cancer, which is spreading) but I cannot be cured. I know this but I need to know if anyone else on weekly Taxol had encouraging results. I still have 3 tumours and a couple of small tumours in my liver. My husband and daughter are trying their best to lift my mood but it’s not working. I’ve never been NED in 21/2 years. I don’t even know what remission is. Is it NED ? I’m feeling really down and tearful since I came home and really don’t know what to do with myself. I feel this is my last chance of some sort of success and I’m scared. We all are of course. I think you’re all brave and caring on here. I wish I had some of your qualities. I asked about trials but I was told we could discuss this when we know if Taxol has Helped. He did say however, with trials we are just throwing ourselves into the unknown (or words to that effect)

If taxol works can we stay on it indefinitely or is that too dangerous? I should have asked the oncologist but I forgot.

Hearing The sad news about dear Laura has upset all of us I know but I can’t get her and her little family out of my mind.

Love to you all

Angela xx

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dryden1 profile image
dryden1

Dearest Angela,My heart goes out to you. Just to say I am on weekly taxol and also carboplatin with some side effects , having 18 doses ,was feeling down but just received the results of my recent scan and in the word of the oncologists very good response to treatment.It isvso easy to say forward and onwards but ufortunately we haven,t got many alternatives .I am hoping for a remission and THAT IS WHAT I WISHCFOR YOU,CHRIS XXX

Gemimablackvelvet profile image
Gemimablackvelvet in reply to dryden1

Good Morning Chris! Wonderful news about your Scan. It’s the scan we dread and responding well is something we crave for. You’re right we don’t have many alternatives so I’ll think of you and carry on regardless, as they say,

Thank you for taking the time to reply and all the best for your ‘Pending’ remission.

Lots of love

Angela xx

Bless your heart Angela. It is so normal for you to feel this way after all you’ve been through. If you can talk to someone about how you’re feeling that will help. Be kind to yourself & try to take one day at a time ( easier said than done I know).

I believe most on here would’ve experienced Taxol for their frontline chemo ( usually with carboplatin too). I had it weekly ( with carbo added every 3 weeks) March to June 2018. For me it was successful as my scan results in July 2018 showed NED ( also called remission). I did have another op Jan 2020 followed by carbo only.

I will have everything crossed your Taxol treatment is successful & gets you an NED result.

Virtual hugs xxx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Differentforgirls

Good morning! Thank you for taking the time to answer my ‘plea’

Talking to and listening to you (having had similar treatment) does help. I’ll just have to pull myself together and hope for the best. Many ladies on here have gone through so much more. I feel quite guilty about the way I’m handling this latest news. I’m older than most of you ladies so I should thank God I didn’t get this deadly disease when I was much younger. It breaks my heart reading about ladies with young children fighting to live and enjoy life an the same time.

Thank you again and sending you lots of love

Angela xxx

delia2 profile image
delia2

Hi Angela. I’m sure hearing the very sad news about Laura has intensified your doubts and fears about your own treatment. But as you know we are all different. From what I have seen on here weekly taxol has helped a number of people in similar situations to you. NED and remission are used interchangeably but I think NED is the more technically accurate term. I’m sure some people who’ve had weekly taxol will respond. I’m sending you hugs and positive thoughts . After a few days you’ll probably get the big girl pants back on and face the beast head on. Xx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to delia2

Good morning Delia! What a lovely message to wake up to today. The first thing I think of when I open my eyes is OC so you have helped me to start the day with a better frame of mind. Thank you.

Lots of love

Angela xx

Hi Angela ,

You were certainly not alone in having a wobbly day yesterday and seeing your oncologist probably just made it worse. I was weepy yesterday, went to bed exhausted but didn't sleep. Just thinking about the future and the past. Like you I've not been clear of the disease in 3 years but now settle for better the devil I know. Fortunately my treatment is holding it back but I have a scan next Tuesday and you can't help but worry about what they might find. Taxol with Carbo did a good job for me in the beginning and I've heard of weekly Taxol being effective.

Have you ever phoned Macmillan they are good at listening .

Going to get my big girl pants out the drawer and put a smile on my face now. Wishing you a more positive day today Angela.

Sending big, gentle hugs.

Nicola xx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to LittleMissStubborn

Thank you Nichola, I’m sorry you had a bad day yesterday. Most of us have bad days and some not so bad. I do feel a little brighter today after reading messages from the ladies on here. Carbo/Taxol hasn’t been mentioned, just Taxol . I haven’t phoned MacMillan, no but over 2 years ago I attended the Look Good Feel Group. I tend to feel MacMillan is the last resort and it scares me.

I’ve been wearing big girls pants for the last six months during lock down and only wear a bra for hospital appointments 😁

Thinking of you and wish you well.

Lots of love

Angela xx

LittleMissStubborn profile image
LittleMissStubborn in reply to Gemimablackvelvet

Hi Angela

I thought that about Macmillan at first, but they are very knowledgable and most importantly have time to talk and explain. I've phoned them a couple of times and they are really good. They are there for whatever stage of your cancer journey you are on.

As for the Look Good Feel Better group, wow. I attended one of their sessions a couple of years ago and felt a million dollars afterwards, even with my bald head! What a fantastic charitable organisation they are too.

And (I'm forever telling my daughter not to ever start a sentence with And!!!), AND then of course there is this platform where we all understand each other and can cry, share good and bad and also laugh together.

Sending lots of love

Nicola xx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to LittleMissStubborn

AND funnily enough Nichola I’ve just got the MacMillan leaflet out. I’ll try to pluck up some courage and give them a ring.

Thank you for caring and lots of love to you Too

Angela xx

Supergran38 profile image
Supergran38

Morning, I would definitely recommend you give Taxol a try.

I had 18 weekly treatments in 2015 and went two years without needing anymore treatment.

Have just finished (last Thursday) another 18 weeks of Taxol, but this time the strength was reduced by 20% as my neutrophils were being effected so had to have Filgrastim for three days after each treatment to boost my blood levels.

So far my CA125 has fallen from 529 in June to 36 this month.

Having my CT scan on Monday so really hoping for good results.

Good luck with what you decide. X

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Supergran38

Wow you really are a Supergran. That was a great read. You’ve actually had Taxol twice? . It’s good to Know if it works once it can be used again.

I wish you all the best for your scan results on Monday. Your CA looks healthy.

Have a good weekend and thank you for replying to me.

Love from Angela Xx

Supergran38 profile image
Supergran38 in reply to Gemimablackvelvet

Yes, twice on Taxol.

Please consider it. X

JustKBO profile image
JustKBO

Dear Angela. I think Laura’s death has saddened and unsettled us all because without being subtle about it we all know that sooner or later we will join her. What she has taught us though is that we don’t give up without a bloody good fight.

You shouldn’t beat yourself up for having days of despair where you cry and feel hopeless. We all do it but at different times which is why, luckily there is someone on here feeling upbeat and positive enough to lift you up and push you along.

I have been feeling very good for several weeks but I know the veneer will slip at some point and I don’t know what will trigger it.

Deep down I am always scared and always have an underlying feeling of sadness but when I have a project going I can distract myself and even be really happy.

I find playing Scrabble Go on my phone helps and makes me concentrate elsewhere. I also unashamedly take Melatonin to help me sleep and listen to thunderstorm sounds on Alexa to help me fall asleep.

KBO Angela lots of hugs and positive vibes are being sent your way. X

bamboo89 profile image
bamboo89 in reply to JustKBO

You have said exactly how I feel... distraction with projects gets me through most of the time, but it's always there, isn't it and sometimes we are overcome ....

I play ScrabbleGo too... and use my old transistor radio with earphones at night, set very quietly on the World Service when/if the night najjers are keeping me awake. At the moment though,the Niraparib seems to be interfering with my sleep, even though I'm really tired... In respect of Laura, I very much hoped she'd win through, but sadly wasn't entirely surprised that she did not, given the circs with her liver... she was such a determined fighter, right to the last.

Miriam

JustKBO profile image
JustKBO in reply to bamboo89

I’ll look for you on Scrabble Go!

bamboo89 profile image
bamboo89 in reply to JustKBO

Because I don't sign in through Facebook, I think my name on there is something like FancyUser - that's what the game designated me as, can't say I'm thrilled by that! My avatar is a blue paperweight though ... at the moment I seem to be playing mostly Americans on there for some reason...

Miriam

JustKBO profile image
JustKBO in reply to bamboo89

I’m trying to find you!!!!!

Gemimablackvelvet profile image
Gemimablackvelvet in reply to JustKBO

I’m following you but I don’t know how I managed that. Click onto my profile Picture and see if that works

Love Angela x

bamboo89 profile image
bamboo89 in reply to JustKBO

Let’s play a game of Scrabble GO! s.scope.ly/idKxGMheXX0 I have no idea if that link will work or whether it will lead straight to me on there, its the first time I've done it... the name they've given me is FancyUser870846... If it doesn't work out I could sign in via Facebook instead...

JustKBO profile image
JustKBO in reply to bamboo89

Hi. That just takes me to my Scrabble page. I’ve scrolled through the people they’re suggesting I should play but there’s no fancy user there. I can’t see what they call me! I’m in a white shirt, spiked white grey hair and sunglasses walking up a beach but sort of just too half of me 😎

bamboo89 profile image
bamboo89 in reply to JustKBO

Think I;ll move this to Chat - I'm sure no one else wants all this on this thread!

Gemimablackvelvet profile image
Gemimablackvelvet in reply to bamboo89

Nothing wrong with chats. We all need a little diversity from our problems occasionally.

Angela xx

JustKBO profile image
JustKBO in reply to bamboo89

Go for the Union Jacks in the top corner of pics. It’s easier playing in the same time zone. Although if you’re having a sleepless night it could be useful!

bamboo89 profile image
bamboo89 in reply to JustKBO

I've sent you a message... by the way, there are no Union Jacks or any other flags on my screen...

Gemimablackvelvet profile image
Gemimablackvelvet in reply to JustKBO

Thank you for thinking of me. It's good to know that at sometime or other we all feel the same. I'm on my phone day and night, mostly trying to put the world to rights and searching the internet for new treatment and cures for OC. I've not managed to achieve either yet but one day someone will. I used to forget I had cancer from time to time but now it's on my mind constantly. I have a lovely home and garden and my little family live 2 minutes away from us. Tomorrow it's The Rugby League Challenge Cup at Wembley Stadium. My son-in-law is a coach with the Leeds Rhinos. Under normal circumstances we would all be living it up in Mayfair right now and watching the match in V.I.P seats tomorrow, Instead we'll be watching it from the lounge on TV.

I'm sure that's not at all interesting to you but I just needed to chat about something besides the big C.

Have a lovely weekend and enjoy your time of feeling good. I hope it lasts for ever .

Lots of love and hugs

Angela xx

JustKBO profile image
JustKBO in reply to Gemimablackvelvet

Come on the Rhinos! What a shame playing such a big game in an empty stadium.

Gemimablackvelvet profile image
Gemimablackvelvet in reply to JustKBO

BTW KBO I managed to enjoy a couple of glasses of bubbly after the match and a couple of Baileys before. I feel fine but I know I won’t be indulging after Starting Taxol on Friday. Not even a chocolate liqueur.

Angela xx

JustKBO profile image
JustKBO in reply to Gemimablackvelvet

Good for you. It must have been fun. We watched Exeter beat Racing that was a good match too. Try to get some sleep. X

JustKBO profile image
JustKBO in reply to Gemimablackvelvet

They won! 🦏🏉🏆

Newbie_2020 profile image
Newbie_2020

I am so sorry to hear of your upset added to the uncertainty that we all face with OC.

The latest research/trial available for platinum resistance is DICE.

This trial has two arms 1/ Taxol only and 2/a random selection for those who will be on Taxol plus the new drug. The only extensive online information about it, that I have come across, is within clinicaltrials.gov/ct2/show...

It also lists the UK locations that are taking part.

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Newbie_2020

Thank you for this Newbie. Looks very interesting. I've made a note and I'll look it up.

Angela xx

Broader profile image
Broader

Hi Angela

I did June to Sept on Taxol 3 weeks on 1 week off and yes, it worked for me, it was tolerable apart from the odd allergy some neuropathy and a little nausea, I’m now on Letrozole so hoping for a good length of time off, diagnosed Dec 2018 and only had 7 months off chemo since then so I can sympathise with you. This is not your last chance, go kick it’s butt ! Don’t be scared of it, you’re bigger than that.

Keep your chin up lass, I know it’s hard but dig deep, you are stronger than you think.

Thinking of you

Wishing you well

Christine x

Birdsong222 profile image
Birdsong222

Hello Angela

My full details are in my profile. I am presently on Taxol as a solo agent as they deem me carboplatin resistant. This is going well and brought my ca125 from low thousand figure to 146 three weeks ago (l only find out figure from consultants phonecalls x3 weekly). I have had a scan and await the call with results. I actually feel better than l have for many months. My only issue can be odd days of fatigue.

This treatment for me is an attempt to get my disease into a stable state. From the time l was told incurable but treatable, l understood what this meant for me. My oncologist was always open, honest and optimistic when discussing my prognosis. But now 3 years later the demons in my head throw dark thoughts my way.

Mostly l live one day, one week and one month at time. Covid though is spoiling so much for people with life limiting conditions. My treatments are weekly no breaks as the disease is aggressive and being treated aggressively. I know of a lady at my hospital who is surviving presently on Taxol, on a regime of 6 months on then 6 months off, so there is hope. 🙂

I do hope your mood has lifted and life feels better today. Wishing you well and sending a big hug.

Sylvia x

Hello Angela - I understand your feelings completely, I started chemo in June'18 at age 61 and been on it ever since, as soon as I stop the cancer progresses. Niraparib didn't work for me.

I had my oncology meeting 4 weeks ago after finishing carbo/gemcitibine, and was told that my CT scan was ok - nothing new and nothing has grown, however my CA125 is still at 500, they want me to take 3 months off of treatment to allow my bloods and veins to recover, which I am grateful for but know that the disease marches on within, which is extremely hard to cope with, I find myself crying a lot because the realisation is that I am running out of options, without this damned covid I would have taken myself off on a cruise to distract me but sadly not to be. I think being stuck in doors due to covid/bad weather doesn't help our state of mind.

I know that in a couple of months time I will be back on treatment so I am trying to enjoy my little break, they have mentioned weekly Taxol, but did not comment on clinical trials, I have read that because I tried a PARP and it didn't work, I don't qualify for any trial that uses a PARP and as I am NON BRCA my options for trials are very limited.

I have decided to reach out to the Care Oncology Clinic, just to give me a sense of "doing something" and pray it works.

Wishing you all the very best

Lyn

bamboo89 profile image
bamboo89 in reply to

I seem to be like you - had carboplatin between March and July this year - hospital was very pleased with my response, although I noted the CA125 did not actually get down below 53, but they were pleased because it came down from nearly 1200 very quickly. Sadly though, seems it only works while I'm on it; my CA125 started to rise 9 weeks after finishing. Just started Niraparib,but am stuck on the lowest dose because of its effect on platelets (I'm permanently on blood thinners for another reason) and I'm pretty sure the ascites is starting to collect again... and like most of us, all we can do because of Covid is really not very much. I did manage to squeeze in redecorating and recarpeting my rather large sitting/dining room in between finishing chemo and starting Niraparib, but now find I'm suffering fatigue most of the time with it. I find myself falling into that place that says what a fine way to spend my last few months of life, not...then trying to tell myself this might not be my last few months, whilst being fully aware I'm about as likely to accept more and heavier duty chemo as pigs are to fly... and on and on and on... I do think Covid is making it harder for all of us.

Take care

Miriam

Gemimablackvelvet profile image
Gemimablackvelvet in reply to

Hi Lyn , so sorry you’re having to play the waiting game. It’s horrendous isn’t it! It’s so easy to say we need a break from treatment but as you said you can just know the disease galloping on. My oncologist didn’t rule out trials Although not very encouraging. He said we are just thrusting and trusting our bodies to scientists. I’ve been on Rucaparib Which didn’t work well and I’m BRACA negative too. I’ve had the COC mentioned to me a couple of times I may take a look. It doesn’t hurt to cry in fact it’s good to cry. I’m over 10 years older than you Lyn but we still want to live as long as possible. It’s human nature. We saved our money to make sure we had a comfortable retirement. On hindsight I wish we hadn’t. Christmas is probably a non starter this year and I fear cruises are a thing of the past.

Let’s hope by Christmas more options will be offered to you.

I wish you all the very best too and do cry if you need to. It does you good.

Lots of Love

Angela xx

TarbonNZ profile image
TarbonNZ

Hi Angela. I am exactly the same as you. Bear with me, this will be a long one.

Background: Diagnosed February 2017, and I have never been Ned. I have had reasonable stints of no treatment in between a couple of lines of treatment, apart from this last time. I have had carb/paclitaxel: carb/gem and carb alone. Each time my CA125 went down to between 10-13, however my ct scans showed disease, so it was just a matter of waiting for CA125 to bounce back up, and hold of treatment as long as possible, so you did not become platinum intolerant. , without being stupid of course. . My third line treatment of carb alone started in November last year, I had a couple of spots on my liver at that stage. I finished around Mid February from memory this year, with a CA125 of 12. Unfortunately as soon as I stopped treatment, it started to rise, although the scan showed my liver was clear, and the other tumours had reduced in size,. In April it started moving quite quickly. I held off treatment due to Covid and lockdown etc, and until the results of a scan in June. It was not a good result. It was growing round my liver, my gall bladder, deposits on the bowel, a large tumour in lower right abdomen etc, etc. My CA125 started galloping and was just below 600. For me this is very high, I was very ill at diagnosis with 700. Everyone is different interms of CA125, some peope are in their thousands, and others hundreds. This is why it is only used in conjunction with a scan.

Now for the part you are interested in. I have (today), just had my seventh weekly paclitaxel treatment. I started at CA125 of 598. My first tests at 4 weeks (usually three, but I had a one week break for an urgent eye op). My CA dropped to 280. The next CA 3 weeks on it dropped to 57. I am due for further tests next week. A scan is not done here until you have completed a minimum of 12 treatments.

Now the other stuff you are interested in:

My Oncologist has told me they can continue using Taxol as long as it is working, and I know that in the UK there are people who have been on it for 18 weeks etc. I am now deemed platinum intolerant, because of the speed it came back, but I have been told they could try it again.

How am I dealing with weekly taxol?

I have not found it as easy as some people, but I now have the pattern, so I know how the week runs, and I just work my life round it. I was devastated when it came back and spread so rapidly this time, but I have a not give up mentality, and after a week feeling utterly miserable I have forged on. I also have to travel 90kms for treatment, so that is tiring jn itself.

My symptons:

It is Friday here: Tonight I feel a bit unwell from around 10pm.

In the morning I feel a little nauseous, and my temperature starts rising, giving me a headache. But, I have meds for everything, and all in all, Saturday and Sunday are reasonable, apart from the fact that the more treatments I have the more tired I am becoming.

Monday: i start getting joint and muscle pain, which is reasonably testing, and lasts until Tuesday afternoon.

Wednesday I start feeling ok, and Thursday pretty good. Treatment again Friday.

I also have an allergic reaction to the treatment, in that I get a very itchy rash, and made the mistake of scratching myself to death, breaking the skin. Of course things take an age to heal now, and I was suitably chastised.

The Chemo is affecting my bloods. I am anaemic, and my kidneys started packing up, but this is thought to be a combination of the anti inflammatorys I take for arthritis, in combination with the chemo. I have had to go off anti-inflammatories. They will re-test next week.

I have nerve damage in fingers and toes, but it is not as bad as some people get it, and my Oncologist said that this is the main reason some people struggle with the treatment.

I know this sounds a lot of negatives, but they are all small things that we have worked through with pills and potions and ointments. I now find it tolerable, and I will continue to the end. I should also say that I only take one steroid pill prior to treatment, and I do not take them after, or ondansetron. Doing this I am able to sleep, and I do not get constipated. This is the tradeoff. If you elect to take all of this, you may sail through the treatments. I am just petrified of getting a bowel blockage. I did forget the worst part "hair". Where as you lose it in a flurry when you go through normal paclitaxel treatment cycles, weekly is awful. It is like slow torture. It comes out what seems to be hair by hair. Ghastly. I am in a competition with my cat as to who drops the most hairs in a day. I think I will only be ‘street legal" for one more week at the most. My Oncologist did offer me the name of a hair thickening treatment his hairdresser had talked him into, but when I asked if ut worked, he said no, so I passed :)

I hope this helps you. You just have to get the right mindset, and commit to giving it a go. Remember that everybody is not the same. Some people sail through the weekly treatments, and other people like me get a lot of small irritating issues, but which I have worked through with the Oncologist to get solutions for,. In terms of family, the one thing I have struggled with is family being over positive. I am a pragmatist, amd while I do not focus on the negative, I hate people being over positive, when the facts are the facts. I just focus on making each day the best it can be, and work around all of the other stuff. In February next year it will be four tears, and I know i will make that. My body is strong, and while it is I will continue to take any treatment opportunity going.

Sorry this is a long missive, but I wanted to tell you how it has been, and how it us with me now. Actually I have found it quite cathartic, seeing what I have survived. It has lifted my spirits in some weird way. Much love Therese

P.S. I am devastated to hear about Laura, as I had totally missed she had passed on. That was one Lady who demonstrated to me to never give up while there is a chance in hell of delaying what we know is inevitable. Also, you could be run over by a bus tomorrow.!

JustKBO profile image
JustKBO in reply to TarbonNZ

Brilliant. Thanks. Well done and keep on keeping on.

bamboo89 profile image
bamboo89 in reply to TarbonNZ

I hope Gemimablackvelvet finds your detailed response helpful - I certainly did, not only was it interesting but it was testament to your positive yet pragmatic mindset. I have avoided Taxol like the plague, but I suspect it will be on the menu shortly, if I want it, since I'm running out of options, and reading what you've said has been very useful, so many thanks from me... I do admire your courage and persistence and hope you have good results.

Miriam

TarbonNZ profile image
TarbonNZ in reply to bamboo89

I’m glad you found it helpful Miriam. Yes Taxol was one I put off, but it becomes inevitable as you work your way down all of the options. Really in the end you just have to jump on board for the ride, and hope it is not too much of a wild one. 💙

Gemimablackvelvet profile image
Gemimablackvelvet in reply to TarbonNZ

Thank you Tarbon, I really enjoyed that. All of it! The good, the bad and the bloody awful 🤭 I’ve read it several times now and tried to take it all in. I’m getting all stocked up with the meds and wigs. I have a few already and drawers full of hats. Thank Goodness it winter hats will be the norm. Doesn’t look like anyone will be going far sometime soon anyway. Some of the younger ladies look good without hair but I’m not young and I know for a fact I won’t look good. Something I dread but will have to get used to. Who needs long hair in the grave. We will survive for a while yet hopefully. Before reading these encouraging replies yesterday and today I thought I’d never reach Christmas.

I’ve bought a lot of unnecessary new clothes but it’s something I’ve always done and enjoyed. When is it time to be realistic and admit I’ll probably never wear them ???

Thank you again and keep in touch.

I’d like to follow you but don’t know how🤷‍♀️ Perhaps you could follow me.

Lots of love and all the best with your ongoing treatment

Angela xx

in reply to Gemimablackvelvet

to follow someone on here click on their user ie lyn1987 this will bring up their profile the follow box appears at the top on the right hand side.

If buying clothes makes you happy then keep on doing it, guilt free! 😍

Gemimablackvelvet profile image
Gemimablackvelvet in reply to

Thank you Lyn, I’ll try that again. I don’t always get it right. Story of my life 😊

Angela xx

TarbonNZ profile image
TarbonNZ in reply to Gemimablackvelvet

Hi Angela, thanks for your response. In terms of buying clothes, I have been doing the same for some reason. I have bought some things I have never worn before, but why not. I have never worn a wig, I get some really cool headwear and wear that. I have a contact who looked after me the first time round, and I have just ordered some new ones. My hair is getting really thin now, and I had it cut short last week, but I will have to have it cut right down in about a week. C’est la vie . 💙

Gemimablackvelvet profile image
Gemimablackvelvet in reply to TarbonNZ

Hello again! My hair is shoulder length. I wear headbands most of the time but my CSN has advised me to have it cut before Taxol takes it’s toll. I love hats and headgear.

Love Angela Xx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to TarbonNZ

Hello, it's 1.30am here in GB. You will have had your chemo by now. Just thought I'd wish you well and hope you're not feeling too bad.

I'm going to bed now and hopefully get some sleep.

Good night and God Bless

Angela xx

mupash profile image
mupash

HI ANGELA,

JUST SAW YOUR POST. I'M TERRIBLY SORRY YOU'RE GOING THROUGH THIS.

I CAN TELL YOU TAXOL IS A VERY GOOD DRUG AND HAS GREAT SUCCESS WITH MANY PEOPLE. ARE YOU BRCA POSITIVE? ARE THEY GOING TO USE CARBOPLATIN WITH IT? ALSO, I HAVE NOTICED THAT MANY PEOPLE ON THIS SITE HAVE BEEN GIVEN AVASTIN WITH TAXOL. IT COULDN'T HURT TO ASK ABOUT IT AND I WOULD DEFINITELY KEEP POSITIVE. TAXOL IS SUCCESSFUL WITH SO MANY. I'M HOPING FOR THE BEST NEWS IN YOUR NEXT POST!!!

WHEN WILL YOU START? PLEASE LET US KNOW HOW IT IS GOING.

REMEMBER YOU ARE STRONGER THAN YOU THINK!

WISHING YOU THE BEST ALWAYS,

LEE

Tenacious66 profile image
Tenacious66

I am platinum resistant too. ☹️. I’m on my third 3rd line of treatment now - no line ever lasting longer than 3 months. I’m now on weekly taxol with every other week Avastin. Side effects haven’t been too bad (far worse with Doxil, which was my 2nd line). I’m finding my chemo brain is getting far worse, which stinks. But bottom line is, I have never been NED either. And it’s really hard to accept most of the time. My gyn/onc said we’ll just keep finding new lines of treatment. I just have to look at it, and treat it as a chronic disease. Best of luck to you. If you ever have any questions, please don’t hesitate to ask!

xoxo,

Carol

Mlowery profile image
Mlowery in reply to Tenacious66

Hi

Platinum resistant never Ned 3rd line weekly taxol. Success No treatment for nearly two years. My Oncologist said we know what to use next time. I have seen many friends leave us those who I thought would outlive me. Yes we have a chronic disease but so do a lot of other people. Mental strength is power good luck and best wishes

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Tenacious66

I really hope the Taxol works for you Carol. I have had so many encouraging posts from experienced ladies I beginning to feel hopeful.

Is “Chemo Brain“ a common condition with chemo? I thought it was just me. My mind is mushy and my hearing has deteriorated during the last few months. My memory is little to write home about. I can hardly remember my own name 😊 I’m not as young of some of the ladies on here by a long chalk but this has happened quite suddenly.

All the very best with Taxol Carol I’ll try to follow you if you don’t mind!

Angela xx

Tenacious66 profile image
Tenacious66 in reply to Gemimablackvelvet

Absolutely! I’m following you too!! My OC spread to my liver too. I have had good days, and bad days. It’s scary though (strength in numbers 🙏🏼). I’m in the US and my first 2 lines were trials, this 3rd line is not a trial. I am not BRCA posi

I think you can stay on taxol as long as it’s lasting - but I’m no doctor 😜

Chemo brain is very real! I’m in the US and that’s what we call it here. I forget everything. I had to go on long term disability. I can be looking for something in the fridge and it’s right in front of me and I can’t find it. It’s crazy!

xoxo,

Carol

I will have my CA 125 tested on Tuesday and then will have a CT scan in early November. I will know more how the weekly taxol is working after those tests.

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Tenacious66

Good luck xx

Tenacious66 profile image
Tenacious66 in reply to Tenacious66

CORRECTION - my treatment lines have never lasted more than 6 months, not 3 months (another example of chemo brain!).

Neona profile image
Neona

I think it is well worth doing the taxol as it may work. If it doesn’t it opens the door to trials as many , including mine, only take patients who have failed at conventional treatment. As for trials “ into the unknown” there is nothing to lose if you’ve tried everything else so definately worth looking into.

Janice252 profile image
Janice252

Hi Angela. How are you feeling now ? Hopefully a bit better. I was due to start my weekly Taxol yesterday. Went to the hospital on Monday for assessment etc and my temperature was up. Cue a Covid test by nurses in full PPE and my daughter and I being isolated in a side room for 3 hours! Not what I needed. Test was negative thankfully but I do have a kidney infection so back on antibiotics. Treatment will start on 2nd November. CT scan next week and picc line inserted before that. When do you start your treatment? I think I've got my head around it but I'm very up and down. It's been over 3 years of nearly constant treatment and I'm just weary of the worry. Lots of love

Janice xx

Sorry Janice, that’s all you need another 10 days of waiting and worrying. Hope it passes quickly for you. My Taxol is this Friday. Like you I’m getting my head round this a little now. So many positive comments from the ladies on here it gives you hope to carry on.

It will work for us Janice Xx

Stay well and safe

Love from Angela xx

Janice252 profile image
Janice252 in reply to Gemimablackvelvet

Hi Angela. Will be thinking about you tomorrow. Are you having bloods etc on the same day? Will you be able to have anyone with you ? I'm sure it will all go well. Have all the essentials with you, something to read, some sweet treats and something to keep you warm.

Lots of love ❤️❤️ xx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Janice252

Hi Janice lovely to hear from you . No my husband can’t stay with me ☹️ but I will take a book and goodies. Blood test when I get there . It’s going to be a long day, however They’re still serving drinks and sandwiches here in Sheffield so that’s a bonus. I’ll let you know how I go on and thank you for thinking of me.

Lots of love

Angelaxx

Good morning Janice! I’m here early to take my tablet beginning with R can’t remember the name. I don’t need blood tests today, apparently, as I had them 2 weeks ago. I’ll be in touch

Lots of love

Angela xx

Janice252 profile image
Janice252 in reply to Gemimablackvelvet

Hope it's all going well. Good you didn't need to get bloods done. They won't do chemo here unless you have a blood test in the last few days. If you feel like chatting, I hope you've got friendly company.

Lots of love xx

Janice252 profile image
Janice252

Hi Angela. How are you getting on with the Taxol? Have you had any side effects ? Hope it's all going well. I had scan and picc line inserted on Thursday and am up to the hospital tomorrow . Hopefully chemo can start then. Got a few extra worries which weren't there before so I'll be glad to discuss everything with the consultant. These dark nights are so depressing. Especially when you're on your own. I can normally lift my spirits but it's hard in the winter. Stay safe. Take care xx

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Janice252

Hi Janice, I’m really sorry you’re feeling down it must be very, very difficult on your own. I don’t know How you do it.

I had my first Taxol Friday 23rd October. The only problem I’ve had up to now is being very tiered the first couple of days and a little constipation during the week but I’ve been able to manage that with Docusate (and Bisocodyl when really struggling) no nausea and no hair loss. Still feeling bloated after my evening meal. They have moved my chemo to Monday’s now so I will be there tomorrow the same as you

I haven’t lost any hair yet but I’m told that will come after the second or third week. I try to keep busy doing absolutely unnecessary things.

As soon as I stop and think it hits me like a brick wall that I have cancer. Incurable but treatable cancer that has now spread into my liver. I can’t remember if I mentioned to you the oncologist told me there’s a good chance Taxol will reach the liver as it goes right through our body but as usual he Reminded me he cannot cure me.

We all hope the treatment will go on forever. We have to believe it.

I’m Getting so used to being locked down that I’m beginning to forget how life was before March but I’m not on my own. My husband helps with almost everything and my daughter and little family live across the road, although we’re in tier 2 and now total lockdown so it’ll just be back to our shopping dropped off at the door and a quick wave through the patio window.

Good luck tomorrow Janice. I hope the other problem is sorted with your oncologist and the chemo goes well.

Lots of love and care

Angela x

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