Paclitaxol didnt do the job.: After mid time scan... - My Ovacome

My Ovacome

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Paclitaxol didnt do the job.

harley profile image
18 Replies

After mid time scan, i was told that the results from paclitaxol wasnt good, there was improvement but not enough. I had my first cycle of the new regime cisplatin/paclitaxol, I was first patient in at 8am and last one out at 7pm today. Premeds then 3 hrs of paclitaxol then flush and 21/2 hours of hydration and drinking copious amounts of water, 2 hrs of cisplatin then another 2/12 hrs hydration, all the while having to measure urine output. if my output had not been good enough, I would have been in trouble - glad to say all went well. anyone else had this regime?

lets hope it works wonders, I know my PPC is platinum sensitive - why didnt I opt for this option in January, still better late then never.

Hugs

Joanna

xxx

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harley
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18 Replies

Hi Joanna,

You must be exhausted, but hoping that everything will go in the right direction,sending you love and best wishes, I hope you get a good night...thinking of you x G x

ChrisH profile image
ChrisH

Hi Joanna

I had the taxol and cistplatin regime after developing a reaction to carboplatin last year. Unfortunately, it turns out my oc is platinum resistant, so while the initial results were good, it tapered off and came back very quickly. I'm now trying Caelyx, so fingers crossed.

They didn't measure my urine output, I don't know why, maybe my oncologist was happy to let me say if it was low. He told me to make sure I drank 2 litres a day for two or three days either side of my chemo. I found that as a got further into the cycles I had more sickness, so watch out for that and keep up the anti sickness meds for as long as you need to! I was never sure how much was sheer exhaustion after such long days, and not being able to have a proper hot meal at my usual times. Also watch out for numbness is your hands and feet. Bothe drugs can do this, so if you get it, tell your oncologist, they can reduce the taxol as that is the "booster".

All the best, Chris

Whippit profile image
Whippit

Dear Joanne, I'm really sorry to hear it was a disappointing result mid-way. Were you actually given the choice of Paclitaxol or cisplatin/paclitaxol in January at the outset or is it something the oncologist suggested. I remember the consultant asking me what I thought and I really felt it was a daft question as I didn't really have the experience or understanding to make a reasoned judgement.

I do hope this new regime works well for you. It does sound very complicated and time-consuming but looks as though your oncologist is monitoring everything very carefully. I hope you don't have too many side-effects but it does seem from what Chris says that it can be monitored effectively.

Keeping my fingers crossed it all goes well this time.

Sending loads of love xxxx Annie

harley profile image
harley in reply to Whippit

Hi Annie,

Thanks, I did have the choice in January as the Paclitaxol seemed to work last time - why have double side effects if we can get away with one) although I did have 1 1/2 doses of carboplatin before I became allergic to it so perhaps the magic ingredient for me is platinum based chemo - fingers crossed but it was a really long day and I missed my practice for Courage on the Catwalk which is taking place on 21st April in aid of a brilliant local cancer charity, Friends of ANCHOR but my face was like a beacon and I was still peeing buckets, Thank goodness that seems to be back to normal this morning, LOL.

Friends of ANCHOR are a charity which provides non NHS funded equipment and is helping to make North-East Scotland's cancer and haematology care the best it can be if anyone wants to sponsor me for this event I have a Just giving page,

justgiving.com/joanna-on-th...

There had been a Scottish Government announcement yesterday re cancer diagnosis and faulty genes and my husband informed me that OC was mentioned, but I havnt had time to look into it yet and not much in local paper this morning.

Now that I have had my porridge, time for steroids, thatll keep me going, Yum.

Joanna

xxx

in reply to harley

It was in the internet based newspapers such as the daily mail on-line. It basicaly said that in future they would be able to screen for breast and ovarian by DNA testing. It is some years away though.

Whippit profile image
Whippit in reply to harley

I'll certainly visit your JustGiving Page and wish you every luck with your fundraising and the amazing Courage on the Catwalk event. I'm really looking forward to hearing how that goes but hopefully you'll be posting up progress and you'll make a significant difference to cancer and haematology in North-East Scotland.

Keep cheerful despite the lengthy treatment and the little disappointment recently. I was told at a lecture by Ovarian Cancer Action that carbo-platin works most effectively only for the first line. Let's hope advances can be made on that so it retains its efficacy on subsequent lines.

Keep posting! love Annie xxx

harley profile image
harley

Hi Gwyn and Chris

many thanks for your good wishes, Luckily my PPC is platinum sensitive - well it was before so fingers crossed. I had quite a good night, just catching up with all the pills they gave me yesterday, feel a bit queezy this morning but I am sure that will pass. I have been really lucky and have never been sick post chemo.

Onwards and upwards.

Joanna

xx

citrine profile image
citrine

Wow, what a day you had Joanna! Hope you feel rested.

Sending best wishes.

Love Mary xx

There are two platinum based chemo,s. Carboplatin and Cisplatin. The Cisplatin was the very first to be developed and is stronger and more toxic than Carbo. However carbo is generally preferred as first choice of treatment because side effects less severe. When the 1st line of treatment fails then at some point the Rotterdam regimen can be used which is the Cisplatin combined with zopotide. These regimen can be brutal because of the toxicity and the effects on the kidneys which is why you must drink plenty of fluids to flush the kidneys. However for those platinum resistant then its not an option. Those who manage the treatment of cisplatin tend to enjoy a much improved period of remission. Rgds Paul x

in reply to

Hi Paul. The Rotterdam regime (cisplatin & etoposide) can be used for platinum resistant disease - it is the most effective chemo according to a phase 2 study in Holland 10 years ago. Platinum resistance is the reason the regime was developed. I do not know why it isn't widely available or why a phase 3 study hasn't been done (a phase 3 study would be difficult in terms of recruitment also the results of the phase 2 were pretty remarkable).

Cx

in reply to

God knows why I keep calling etoposide zopotide. Yes strange not all offer the rotterdam as treatment. Our onc muted he may use it again for us next year if we have a recurrence.

harley profile image
harley

Hi Paul,

I am sure I too had read that cisplatin was the forerunner to carbo, but my oncologist said the opposite on Monday. Looking forward to a much improved period of remission many thanks for the info.

regards

Joanna x

in reply to harley

Cisplatin 1971, Carboplatin 1980,s

Hi Joanna

What a long day you had! I do hope the new regime produces better results for you.

Wishing you all the best

Linda xxx

ChrisH profile image
ChrisH

Forgot to say, when I was on carboplatin and taxol I had problems eating, flt sick most of the time. (I also went bright red in the face, arms, chest, itched all over and apparently had a pulse of over 150 in my stopped dose!) anyway, when I was on cistplatin and taxol, I not only felt hungry, but had really enjoyed food.....probably too much, I put on about half a stone!

Chris

Oh dear I feel for you on the cisplatin - I remember weeing for England, you feel like you are awash but dare not stop drinking! I comforted myself with the thought that cisplatin is the standard in the US where recovery rates are a bit better, and just hoped it would have that effect on me too!

Love

Sue xxx

harley profile image
harley

Hi,

Thanks Sue, I am glad to report that after some interesting detours on the way home to find public loos, my water works have returned to normal - phew. Still drinking loads tho to make sure it gets well flushed out of my system. No tingly fingers and toes yet - heres hoping its not as bad as has been reported to me. I was pleased to read that Cisplatin is the the standard in the US where recovery is a bit better, I had a year free last time, lets hope its a lot longer this time but I think I will only have three cisplatin instead of 6 as I have already had three with paclitaxol on its own which wasnt moving things very fast although I had been feeling better.

CA125 down to 19 on Wed so things were improving, hoping the cisplatin will give it a good kicking.

Love

joanna

xx

drdu profile image
drdu

Hi, Joanna.

I too had cisplatin after developed allergy to carboplatin - was told this is quite common. Cisplatin worked well for me along with taxol (Paclitaxel), though it had worse side effects for me than carbo - more nausea and tiredness, but well worth it. Sounds good that CA125 down to 19. Keep going!

Love,

Eileen xx

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