Stop pursuing treatment, or weekly taxol

[Nicyellow]

This is the latest options my oncologist put to me this Fri. I'm hoping you lovely ladies will help with your wonderful perspectives and provide any close experiences you have had to my own predicament.

1st, some background info. I was first diagnosed with OC after 2 plural effusion drains on right lung in May 2016. I went on the ICON 8 trial, carboplatinium, taxol and Avastin. After 6 cycles I had debulk surgery and then another 2 cycles of chemo to "mop up". I continued with Avastin as maintenance to Sept 2017. Unfortunately at the last 2 my ca125 had started to raise and I was told cancer was still there, however consultant would look at treatment plans when I became symptomatic. I decided to go on a trip of a life time and spent Dec 2017, Jan and Feb 2018 visiting friends and family in NZ, Bali and Australia. I had a wonderful time, however was quite ill near end of trip. So, the day after I arrived back I was in hospital. I had 4 litres of fluid drained from Ascites and two litres each drained from left and right plural effusions. This was quickly followed with 6 cycles of carboplatin and caelyx. I tolerated this treatment fairly well (despite a very sore mouth). However, at the end of treatment consultation I was told my ca125 had plateaued at 170.

A week ago I was back in hospital for another Ascites drain, 4 litres. I met with oncologist this Friday. Ascites is already coming back and I have fluid on right lung. I was advised just 2 options. Just treat the symptoms and have permanent drain for Ascites and when fluid on lungs have built up, drain them too. My breathing is currently quite restrictive. Or, weekly taxol ( with a break every 3 weeks) for six months.

I asked about nariparid and any trail treatments, however I don't fit criteria.

This is my dilemma. Do I accept I've tried and it's time to just have my symptoms treated. Or, do I go ahead with Taxol? I found this drug hard going 1st time round and was very anaemic. However, this time round it will be smaller doses, I'm 55, pretty fit despite feeling very tired with the OC stuff and oncologist reakons I should tolerate well. But what if I just end up in the same situation I am in now, just 6 months down the line.

Sorry, this post is a lot longer than I expected. Thanks for your patience and any insights greatly accepted x

[Lindaura]

Well,

That is a very sad story.

But, you said it yourself. You are too young and too relatively fit to quit.

Don’t wait around.

Anecdotally, the weekly Taxol can work and because the weekly doses are smaller, it’s less debilitating.

On the other hand, you should qualify for Niraparib, so perhaps you should get a second opinion.

I personally don’t believe in only treating the symptoms, you want to bring out the big guns and get that 👿👿👿👿👿!!!

Ascites and Pleural effusions are so uncomfortable, and a permanent drain should be a last resort.

If you can destroy the tumours, the ascites and effusions will drain away.

Anyway, do something. Doing nothing is not the best option.

Where are you located, BTW?

Best wishes on the best decision,

Laura

[lairdchristi]

Taxol. Take the taxol.

[January-2016-UK]

I found Taxol hard during first line with Carboplatin and had to have a 20% dose reduction but when I went on weekly Taxol it was much easier to tolerate on its own. You're right that the reduced dose every week seems easier for some of us than a bigger dose once every three weeks.

I had a very good response and most of my cancer disappeared. However I had some growth the last few weeks. I then was treatment free for six months. So, for me, the weekly Taxol gave me a year before I started on something else.

If it were me, I'd try it. You don't have to stick with it if the side effects seem too much.

[Irisisme]

Hello Niceyellow,

I haven’t been following posts for a bit as having to much of a good time in Spain, but you wanted to know what others thought you should so here goes.

I’ve had a similar story except instead of ascites being the pain it’s been partial bowl blockages. You can read my profile to see that. I was on the weekly taxol and it IS better than the three together - I did lose my hair and I was anemic but it was doable.

I finished the taxol and the end of August and have been living it up in Spain since September. Ok, I do still get tired so I miss some of the action, and I do still have some abdominal pain - and joint pains too - but I’m still glad I went for the taxol.

Only you can decide but it seems to me that it’s a bit early for you to be rejecting treatments. You can always abandon it if the side-effects become unbearable but if you don’t start you’ll never know. Anyway, you could say that it IS treating the symptoms, that’s what I had it for as I know I will never be clear of my cancer.

Just don’t give up!

Good Luck,

Irisxx

[Hidden]

Personally I would try the taxol option. Also ask about some of the other treatments like a different parp inhibitor (here in Australia you can get oliaparib in the public system) or gemcitabene (sorry spelling might not be right) or other platinum based drugs. Up to you of course what you feel comfortable with but I've just turned 56 (diagnosed early 2015) and not ready to quit yet.

Good luck and best wishes Dawn

[Di16]

I had weekly Taxol and found it reasonably easy to tolerate, I'm sure it must be easier than when combined with other drugs. If you don't try it you'll never know what it would have done for you. And are you ready yet to give up trying to hold back the cancer?

[Lyndy]

I would get a second opinion if you haven’t already...if you aren’t ready to quit neither should your oncologist! Go to a specialist centre where they will look at all your options xx

[Neona]

Have you considered a second opinion? I was offered caelyx or a phase 2 trial by my local hospital and was not told about phase one trials . I went for a scond opinion at the London Clinic and was referred to the UCLH Research Facility and am now on a trial which has kept me stable for nearly a year now. I would not be on this trial if I had listened to my original oncologist.

[Nicyellow]

Thank you ladies for all your replies. I found them very helpful and encouraging. I will go fo the weekly taxol. I'm sure now that it can only be better than where I'm currently at. there are always new treatments coming forth, so in the future I may have some more options. Thank you x

[Cropcrop]

Hi lovely, you’ve certainly been through the wars so far but you’re young and there are options. I obviously can’t tell you what’s best for you but if it’s any help at all I had my taxol every week for 18 weeks, the doseage is adjusted accordingly and I found it relatively easy. Obviously, as you know, it’s a cumulative drug and any side effects do increase as you go but lots of us have found it tolerable in its weekly format. If I have to do it again I’d certainly ask for a weekly dose.

Good luck with whatever you decide todo, love and hugs ❤️ Xx Jane

[Hopefulgal1]

I am so sorry it’s been such a tough time for you but you’re right - way too young to stop and wondered if you tried Taxol again it may just kick in? I also have got to a junction but am also reading “ how to starve cancer” and using drugs like Metformin etc sound so interesting. Good luck - and May you find the drive to keep on chasing it down! Xxxx