Hi I was the first one in the UK to get on the Prima double blind Niraparib trial last year, following diagnosis May 2016. I was started on 3 a day & it was clear I had the drug not the placebo, as it poisoned me ?! Dose was too high, & if under 75kg patients now start on two only, my kidneys couldn't cope with the high dose. They got me back on two a day, but sadly my blood hadn't fully recovered, & my levels didn't pick up. Just before Xmas I resumed on one a day, & remained well till last month. A PET scan showed reoccurrence around my peritoneal cavity, omentum, spleen, gallbladder, appendix plus full hysterectomy in March 2017, had left the cells little to attach themselves to, though I did have a liver lesion left, now advanced further. I start Carbo / Caelyx 2nd line chemo next week. I respond well to carbo, so hoping Caelyx will be tolerated too. Scared but determined, onwards & upwards. Love & hugs Pauline xx
Carbo / Caelyx : Hi I was the first one in the... - My Ovacome
Started on my second line of Carbo / Caelyx yesterday .No reactions to the infusion which I was very relieved about and today I am fine, have been warned that side effects might kick in day 4 so drinking plenty of water to flush the poison through.Heres hoping we get through this without too many problems and kick the beast into touch again . Juliaxx
When you say 2nd line Julia, do you mean you've had 6 previous four weekly sessions? So this is another round of 6? I get confused by the terms used. I've had chemo on 3 separate occasions starting July 2016, then January 2017 & the last lot in April 2017. I thought this meant I'd had three lines of chemo, however my support nurse said all of those sessions were just 1st line, using the same drug. I agree with you, drinking loads of water is so important. Must compare notes. pauline xx
Mmm, I see so starting in March 17 I started Carbo /Taxol for 6 sessions 9 weekly then op then another 9 weekly. Weeks 1 and 4 had Avastin added in . As I am having a different mix this time Carbo / Caelyx every four weeks then this is second line .I didn’t realise but it makes perfect sense that if you get the same cocktail three times then it’s still first line .I am sure there is someone else out there who understands it better than me .?.love Julia xx
Thanks, knowing carbo suits me, hoping caelyx will too. I really think I'd have tolerated the Niraparib if I hadn't been given the high dose to start with. I do think it's a good maintenance drug, but I needed two a day, one just wasn't strong enough. VERY important to drink lots of water for those taking it. xx
So sorry the Trial didn't go well. Just sending you Good Luck wishes for success with the Carbo/Caelyx Chemo. Hope all goes well and you tolerate it well. I should imagine you'll get lots of cuddles from 'Dellboy'. His white curls look just like my hair when it re-grew after my first line of Chemo. 😳 Great on a dog but awful on me, lol. Luckily it gradually changed back to my straighter hair. Sad! I was so hopeful that I'd end up with nice, loose curls and waves like two of my children have. About to lose it again. I wonder what I'll get this time!? 🤔 Love, Solange 😊
Hi, Pauline, I'm sorry to read your trial did not work we go into them hoping for good results,
I was in a trial managed 7 weeks but it was first phase to see the dose that could be tolerated, I had to stop it was effecting my kidneys also.
As for Caelyx I've had it as a single chemo 3 line treatment with good results, then as a combo 5th line Carbo/ Caelyx again good results.
I stop chemo to go on the trial, now back on Carbo/ Caelyx just had my 2 treatment little side effect,I have had some hard side effects can be manage and it was worth it. Caelyx is being used a lot more with good results in the last couple of years it was away understood that you could only have 6 treatment and this could be true as we all react to chemo in different ways but Caelyx has been good for me and my oncologist keeps a close eye on my heart and blood I have had to put treatment off but only for a few days.
My problem is as soon as I go off chemo my 125 goes up I only manage a few month then back on chemo, this is my 6th treatment in just over 3 years we are seeing if the combo brings it down then my oncologist will look at my options .One opinion is Caelyx as a low dose as maintenance, she is looking at pro hibitors also.
So as you can see we do have options I hope Caelyx proves to give you good results keep in touch take care Lorraine xx
Thank you so much for telling me your experience with this treatment, I'm so glad I stumbled on this site. Being in touch with people who are experiencing the same disease as me is so comforting, as I really thought this was the end, I was expecting to be told how long I've got?! I'd buried my dad just a few days before I got my results, he was 99 & 5 months My fear had been he'd have to bury me, but I've been strong & positive this past two years, & I made sure he saw that. Sounds like Caelyx is proving to be a good maintenance drug already, I really hope it works for you, you must have been through so much already. I would love to keep in touch, good luck, Pauline xx
Hi Pauline, When I was diagnose we were told I would not see the year out I'm still here so with the options we have I don't think it wise for a use by date be given to us.
I'm sorry about your dad ,99& 5 months is a good life but it still hard to lose a parent.
I'm 73 in July and I've told my oncologist she has to get me to at least 80.
I have had 2 treatments so far and will know on Thursday when I go in for my appointment with my oncologist Amanda how my 125 is, the 125 is not always a good indicator but for me it is.
I'm glad you found us and also you now feel a bit move positive for the future.
Take care and yes keep in touch you can always message me if you need someone to talk to ( correspond)..Lorraine xx
Sorry to hear the trial was an ordeal for you. Goodluck with the new combo - certainly seems to do the trick for some ladies. Love the pooch - I bet he's a lot of comfort for you.
Thanks for your good wishes. They promised me a start by this Friday, but haven't got my start day yet, so many patients with cancer here in Cornwall? Must be the same everywhere I guess. The trial was good actually, if they hadn't started me on three I think I would have tolerated it. I was the proof three was too much for my weight group, so they learnt something from my situation. My lovely girl Poppy is a joy, dogs are such a comfort. Pauline xx
Sorry about the trial but if not for people like you, "they" would never know what would be appropriate dosing. Now if they can only figure out how to do that without compromising the patient!
I had Carbo/Caelyx and found it very-do-able. It was so different than weekly Frontline to go to once a month, but that to me was one of the positives. I didn't feel great days 3 and 4 (post chemo) but planned for it and then life returned to normal. I did well on it--ca125 was 256 when I started it and 8 when done with "no measurable disease".
Wishing you an easy time of it and that it gets that liver lesion blasted off and out (and you get to remission). Good luck! oxoxo Judy
Thanks Judy, gives me hope knowing you've responded well. I think trials are a must, for the reasons you've given. I hope to get the chance to go on another one once my 6 sessions are over, just hope I tolerate it. The last time I had 2 chemo drugs carbo / paclitaxel I perforated my bowel, but I think the steroids compounded my problem. My Oncologist tries to keep steroid dose as low as possible now. Good luck & I hope you stay in remission. Pauline xx
Haha …. you were right, that was a folded up blanket, never noticed it sitting on her head before??!! Hope your treatment is going well, & thanks for your good wishes. My 99 year old dad who I lost a few weeks back, was born in Melbourne, Victoria. He travelled to England aged 3 with his English dad & Australian mum, who was from Geelong. He loved Australia & visited his cousins for the last time aged 86?!!! He would have gone again given the chance?! Hugs back, Pauline xx
So sorry to hear about your Dad. Wow he sounds amazing. I did it the other way round. Originally from UK, in London and came to Australia at 28 and fell in love with the land and the Aussies. Moved here to live a year later so here 35 years. Your Dad doing that long flight at 86. Wow. I stopped in 2009 when my Mum died. I feel happy that I didn't get cancer while she was alive. I still have good friends in England and we WhatsApp free on mobile. Do let us know how you go. Hugs.
onwards and upwards is right I wish you success with your next chemo. I'm sorry to hear this has happened to you thank you for sharing this I had a big outstanding argument with my onc about this prima study but it turned out I wasn't suitable as I was on and still on avastin he was afraid I would be given the placebo I felt I was missing out on a better option I kept fighting with him over it at the time I was weighing 49kg.
That's interesting about your fight to get on it. It was a very hard trial to qualify for, & of course he was right if you get the placebo you end up on nothing. My Oncologist said he couldn't give me Avastin because of it's links to bowel perforation, which I'd suffered with. I'd wanted to get the Avastin with the previous trial, but got selected for the Carbo monthly but Paclitaxel weekly option, I was really disappointed not to get the Avastin too. I hope you are responding well now, thanks for telling me your story. Good luck Pauline xx