I've been lurking around mostly so far, reason being that i was on my operation "holiday from chemo" (after full hysto etc. to remove my stage 3c) and felt almost normal for a few weeks, after the initial op pain went. My brain came back and I could enjoy doing some work from home! I have thoroughly enjoyed the (sadly temporary) return of my taste buds and have been glugging gorgeous red wine again.
Today feels like i am crashing back to reality, as I go in for a peritoneal portacath insertion that I have been completely dreading. Then I start on a chemo trial tomorrow. Purpose is to pursue longer remiss ions and higher 5 year survival rates - initial US and Canadian runs have been promising.
Interested if anyone else has been on this one - or on IP at all really - and have experience to share - you get randomised into
~ EITHER carboplatin/taxol the normal IV way
~ OR the carboplatin is delivered 'straight to site' as it were via this IP port in my hip area plus taxol IV as usual in the arm
~ OR cisplatin IP and taxol as normal IV in the arm.
Cisplatin is the USA standard drug for OC according to my onc. It takes 8 friggin' hours to go in via the port and you have to be rehydrated by drip before AND after so it'll be something like a 10 hour round trip... Naturally I've been put in that group. Three lots with the final hit on Christmas Eve, oh joy.
I'll report back in case of use to anyone - if any of you ladies have gone before me do share...!
I can't comment on your chemo method,but I am sure that they are doing what is best for you
I had chemo carbo/taxol last year (second line) and finished the last one in December.. so do know what you are going through..I have been in remission for the second time since..and it is surprising how it now seems in the distant past...sending you best wishes love x G x
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PS...I just read your Mmmmmmm moments and I think it is brilliant...your lovely chef can send some of those meals this way.. haha.. funny I can even smell them..something I hated doing when I was on chemo ...love x G x
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Gwyn - say no more:I will try to get some recipes off him. He boosted up the taste of quite a few things when the tastebuds started to go!
Sarah - it doesn't scale with the horribleness of the treatment -- we are ALL entitled to a good bawl every now and again! Xxxxx
Thanks for the lovely responses - well phase one is done - the portacath is in my hip. I think it will be livable with with a few days painkiller while it beds in.
If anyone else does this *do not believe* them that through sedation you will drift, disconnect and not remember the pain of the spiking, squiddling the catheter into position, and sutures. I had a double dose and stayed totally lucid with nasty memories perfectly intact, ta.
Tomorrow is C-day itself... Let you know what transpires... :-0
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All the best for tomorrow will be thinking and praying for you love x G x
All the very best for the treatment, Sue. It will be worth it if your super chef can tempt you over Christmas. I finished my treatment just before Christmas and really loved the mulled wine and turkey that year, amongst all the other over-indulgences!
Love Wendy xx
Hi
Is this the PETROC trial ? I have just completed the Taxol and Carbo strand of this trial.
I had the port put in during my surgery in July, once they knew it was going to be optimal debulking. I believe they phoned Canada during the surgery to get me randomised to see if they needed to fit a port! As I got the taxol / Carbo strand they fitted the port there and then.
I started the chemo about 5 weeks after the surgery. On day 1 of the 21 day cycle, i had IV taxol in the morning and IP Carbo in the afternoon. Very long day! But all quite doable. By afternoon, i felt quite overloaded with fluid and my abdomen was obviously distended. By the time I went home a I looked very pregnant! However all fluid absorbed over next two days. At end of day before I went home, I spent an hour with feet raised/ head raised/ lying on left then right, to ensure the chemo was well splooshed around inside my abdomen.
Then day 8, I had just taxol as IP. Didn't take quite so long. Then a week off before the next cycle. I had three cycles and finished last week.
I was lucky to have few side effects but tiredness and a bit off some foods. The two lots of chemo over 21 days did knock my neutrophils and I had injections to give myself to keep levels up. Last cycle was delayed a week because of low levels.
Now just had scan and waiting for clinic appt next week, then having port out later in the month. Will be glad to get it out as it doesn't hurt but I can feel it and sometimes I roll on it at night.
Overall I am glad I had the chance to do this trial - I like the idea of drowning the little b-----s as well as poisoning them!
Well done for getting through all this, Lynn. Wishing you all the best with the results when you have the check-up
Love Wendy xx
Hi Lynn,
It is PETROC yes! Like you it made sense to me that attacking the little b-€€-rs by dumping poison straight on their heads seemed valid.... Although Urghhh - I don't like the sound of all the fluid bit and don't know why the cisplatin sounds like it takes even longer but will have to see. Hmm luckily i still have the size 24 jimjams from when i was in hospital for the bloating....husband bought them and you wouldn't normally be seen dead in them but they are at least comfortable!
I do hope I don't get my neutrophils trashed -- it happened to me in the last lot though so it might well again. Ah well -- if it slips a week I might end up with a break over Xmas....were the injections GCSF?
Your surgical team sounds smart to have done it all in one go I do wish mine had --- but congrats on having an optimal debulk - it is nice to think they feel it was just about as good a extraction as poss from the visible perspective. Previously PETROC has had good results from those kinds of candidates, according to the write ups in the journal of clinical oncology...
Sue
X
wiped out from the sedatives now so in bed -- and having rolled on the port wound several times with a lot of &#€%€>¥@ words emerging as a result
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Hi Sue
Interesting to know someone else is doing this - I put a question on here a couple months ago and, then, no one else seemed to be on the PETROC trial. I have been the first one in Plymouth - where are you having yours?
The fluid can be uncomfortable - they didn't want me moving around with the chemo going in the IP port, but did make sure I could have a commode in my room! They can't keep pouring fluid into you and putting pressure on your bladder without letting you have a wee! I didn't drink much during the day, but drank plenty of water over the next few days. I didn't eat much during the day either, just a supply of grapes, melon and some nuts.
And yes it was the GCSF injections that I had during the third week.
Still, very glad I did it so hope all goes well for you too!
Do message me if you have any questions or want any other information - I will help if I can!
All the best!
Lynn x
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I'm in slough area so was sent to mount vernon -- and I have the bladder capacity of a hamster!! Thanks I will ask if anything occurs. Must mostly, as you know, you have to go with the flow... Perhaps wrong analogy in this case
Thanks for the update. I had cisplatin last time but it did not shrink the tumour. I did not feel too bad on it though. The portacath may cause less discomfort than I usually got with conventional IV as it became difficult to find suitable veins. The cisplatin did not affect my taste buds, it seemed to be the Taxol that did that and they would not give me that again because of the neuropathy!
I echo your feeling about the red wine!
Good luck with the trial! Keep us informed about it!
Tip to avoid rolling in the night; one of those V shaped pillows with the apex under the small of your back and an "arm" down each leg. I use it to stop me turning awkwardly and exacerbating the sciatica by moving the offending vertebrae!
Really interested to read about your trial. I have just come off one (ICON6 - daily drug) as my latest scan showed some recurrence - so that didn't do any b....y good. I will have to have further chemo soon. My Onc did say I might be eligible for other trials but I wasn't enthusiastic. But reading your, and Lyn's, experience on the PETROC trial, it would be silly to miss ANY opportunity of giving this ........ disease a good thrashing!! So will do whatever it takes, and take anything they suggest now!
I had cisplatinum 21 years ago when it was the drug of choice for ovarian cancer. As I recall it took about 6 hours with constant rehydration for, as you say, some time before and after the procedure. In my case the cisplatin was a stand alone drug which I was given once a month and the original plan was that it should be for 6 months. In the end I had 4 treatments as my cell count was too low to continue and problems out weighted the benefits. My reaction to it was reasonable, some nausea for the first couple of times but very little for the third and fourth. I cannot remember what the anti-emetic was.
Best of luck
PS I only lost a small amount of hair, just a little thinning really and continue with the water for a few days after. It's uncomfortable but worth it.
Well I am back from my first petroc feeling pretty ok though exhausted... With the pre-meds like piriton etc. plus the pre-hydration and re-hydration then diuretic drips it took 12 FLIPPIN' HOURS!!!! Three lines counting the portacath, for pre-meds+taxol IV and plain fluids IV and cisplatin+augmented IP fluids.
The slooshing around to kind of shake it into all the corners of peritoneal cavity was most peculiar.... Tip me back with feet in the air, tip me up, rolling me left, right and frontwards.... Felt like a chicken fillet being rolled in egg and breadcrumbs (and I am a veggie too).
I have no idea how I will feel tomorrow but will report on the effects for sure...
One bit of good news - CA 125 is down to 23!!!! With full 3 cycles to hopefully get the stragglers. I know I can't be too over- optimistic having stage 3c and started at 3000, but its a boost regardless. Nite nite all.....zzzzzzz
Sue
PS Mount Vernon Marie Curie ward team and research nurses were fantastic!
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Hi Sue,
Just to wish you a very goodnight love x G x
Hi gals --
Reporting back as promised on experience of PETROC trial and side effects of cisplatin\taxol combination in my randomised group:
1. Wowser - was warned cisplatin can often cause significant fatigue - and slightly more fatigue on average than carboplatin. Right on both counts in my experience. The experience of the IP delivery itself (waaaaay longer in terms of time than the IV) may have contributed too, I'm absolutely cream-crackered right now.
2. Shifting to having two-thirds of my cycle's taxol on day 1 (as opposed to spread into 3 equal doses of one third each on days 1,8, and 15 as per my previous treatment plan) has a definite accelerating effect on my taxol side effects - especially the taxol shakes which had me start wobbling on day 2 and struggling to type today (day 3). Previously came on much more gently.
Probably a much more individual reaction: I was lucky enough to escape almost all nausea with standard carbo/taxol combo - the shift to cisplatin has me burping for England (other half seems to think this utterly hilarious). Anyway - otherwise anti-nausea meds including rather expensive "Emend" tabs (at something horrendous like £85 per pill) seem to still be doing the trick.
3. Portacath for the IP delivery (which had me slightly nervous) is settling down fairly fast - reduced within just a few days to achey/awkward rather than painful - just means taking care while moving for now, and avoiding rolling while sleeping.
That's all folks - let you know of anything else significant...
Sue
Wow Sue, that sounds horrendous...but thanks for the update sending you best wishes and love x G x
Petroc update 2 -- finished the first cycle today with the second session, consisting of taxol delivered interperitoneally (IP). Apart from a few premeds WHAT a relief not to be having my arms abused! The second sash of the cycle is far less tiring of the two.
It's a long old process though. The first sash with the cisplatin IP and taxol IV ended up a 12 hour round trip. This second one was 10 hours all in. The thing which really takes the time in both cases is the sloshing phase. First the drugs go in, then a load of saline, then the bed is tipped high and low for a couple of hours as you roll from side to side in turn to make sure it sloshes into all the corners and crevices.
Because this was still only cycle one my port remains sore, bruised and swollen -- but am trusting that the second cycle will be easier again, after. 13 day break. I have come home bloated up with saline, which will slowly eliminate over next few days (was weeping for England last week!h
If you do this, take a coffee runner and companion! You are pretty immobile. But all in all, petroc seeming a good experience so far.
My ca125 level is now 19 so still dropping, hooray. Only downside is that the dates of rest of this now don't think they can be done by Christmas. Bit sad but...
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