I ladies had my first dose of the trail dug Cantrixil, what a day went into hospital 8am and left 5.30 pm, it took 3 hours for the drug to come up from pharmacy, the drug and flush only took 2 hours but I had to have blood taken every 2 hours 7 in all.
I had a canula put in and this played up each time they took blood so for the last 3 they just tried to find a vain, by the end of the day I thought if this is what I have to go through I cant do it.
The trial nurse told me no that the first treatment was like that but the next 5 will only be a blood test the day before then just the drug and flush about 2 hours, the 6th week will be the same as the first week .
I had accommodation at the cancer lodge becourse the hospital is quite a distance from home my husband came and stayed with me incase I had side effect and yes that night the pain was so bad I could not stand up, he wonted me to go back up to the hospital but i said if it's still bad in the morning I will.
I took a pain killer ( Endone) and by the morning it had eased and to-day I'm ok so if that is going to be the only side effect I will manage.
My only concern is I had to go off chemo to go on this trial, this drug is not chemo it hoping it will make the cancer more sensitive to chemo so arfter the 6 treatment then I'll go back on Caelyx,
Hi Lorraine. It all sounds a bit of a nightmare but I hope it works for you. Could you ask for a port? I haven't had the trial conversation with the onc yet but I guess it will come one day.
Hi Krtssy, I was happy with the treatment I was on with Caelyx my oncologist thought as I keep recurring this was a good opportunity for me to make the cancer more sensitive to chemo, she feels I have nothing to lose I can go back on Caelyx at any time,
As for the port I have one I've had it for 2 years they would not use it I don't know why, I've never had blood take from it before.
I now have 2 port the one in the chest and a IP port, I'm like a service station drive and fill up.
Thank for for your wishes and I hope you are still in a good place.. take care Lorraine xx💙💙
Yeah - I'm in a good place mentally. I've never had blood taken from the port either but it's a lot of faffing about for some blood and my veins are good as they've never had chemo pumped into them. I was told by someone that the cancer cells are tough and it's hard to get through the outer coating with the drugs so I'll be interested to hear how your trial goes. I know we are all in a bad place but I thank my lucky stars that I'm here now and not 50 years ago. Probably in the next couple of hundred years cancer will be a thing of the past but for now we are fortunate that we have drugs to help us and trials to take another step forward. To be honest, if I have to have something which is going to finish me off I rather it be something where there's at least a chance of giving me time. There are still lots of diseases where there's no hope at all, but most of us know someone who has one. I certainly do and it's painful to watch them fade away.
So, next time it will be easier and let's hope something happens and you can let us know.
Hi Iris, Thank you I'm feeling a lot better to day and yes it would be great if this drug could help chemo melt the beast..I hope you are going alright in deciding your treatment path.
Lorraine it does sound like a long and tiring day. Hopefully the remaining sessions will be easier and you may not mind repeating this as it’ll be the last one.
Is this drug being administered to you intra peritoneal(?) IP? Just had a quick read of the trial. Looks promising. Got to keep faith that they are developing the holy grail for us and we will all celebrate at the miracle cure!!
Hi Sarah, I"m a lot better to day the pain only lasted that night and slightly the next day.
The drug was administered by IP maybe that is why the pain was so intense it went straight into the cavity and I had to turn from one side to the other.
I have 5 to go but this time it will only be the drug not all the blood test, I can stop at any time but I will try to do the lot. then I will have chemo ( caelyx) hoping it give the beast a kick in the bum. best wishes Sarah..Lorraine xx
Hi Sarah, Yes Ive also read some positive reports on this method, it's not used here in Australia much, when I went in for the ip port she had only done 2 the lady before me and me.
I've read that it should be used more often and also with first line chemo ,it does make same sense, as it is infused into the careity where the cancer is.
below is just some information I read on the subject.
I did read about a hospital that uses it quite a lot for many years ,I'm not sure if it was Uk or USA I see if I can find it for you.
I wish I’d remembered to ask about IP chemo when I saw the Prof to get his views on it. May ask my own oncologist if it’s something she has used. The study looks interesting and I have read about the positive effects previously but it seems like a newer & slightly less unconventional method of delivery x
HI Lorraine. What a day.... you must be exhausted. I'm definitely following along because although my CA125 is stable currently (thank goodness), a recurrence is always playing in the back of my mind and I don't really know what Australia has to offer in terms of clinical trials. I'm so hoping this brings you the stability you deserve. My oncologist is the lead mentioned in the article. He is a bloody legend and I am so reassured on your behalf that he is involved in your care, even if indirectly. He is so sensible, kind and compassionate. I really cannot speak of him highly enough. Sending love and all the positive wishes in the world xxxx
HI Love. It would be good if this new drug is successful as we all know recurrence is so common in ovarian cancer, you are lucky to have such a progressive oncologist..
Good luck Lorraine, I really hope this works for you. The first one sounds horrible but you are right that if it works it's worth persevering with for a nights pain, but not nice for you.
Forgot to ask, do you know if the trial/drug is only for use by ladies who have had the surgery. I find most seem to have part of the criteria for inclusion is this, there seems to be very little for ladies who can't have the surgery.
Hi, I'm not sure about that I know you have to have a couple of treatments and recurring as this drug is for recurring ov cancer, I'll ask when I go in Tuesday and let you know.. take care Lorraine xx
I salute you and everyone who goes on a clinical trial as it brings us all closer to the key to unlocking the secrets of this terrible disease and how it can be defeated . Well done.
Hi, I had my second treatment of the trial this Tuesday will be the 3rd, side effect has been ok I have bad pains the day of the drug and then it better the next day so that's not too bad.
I do have a port it's been in now for 2 years I love it, the first treatment they did not use it but the last they did that was a lot better, I now have 2 ports I feel like I'm at a serves station
drive in fill and go.
I've had a lot of experience with Caelyx first as a 3rd line treatment then carbo/caelyx as 5th line with good results. I found the singles Caelyx was hard for side effect but I managed the 6 rounds so was pleasantly surprised with carbo/caelyx had little side effect.
I was about to go on Cealyx as a maintenance when my oncologist suggested this trial in the hope this new drug will make the cancer more sensitive to chemo when I go back on it,which will be Caelyx.
All chemo are not suitable for us but Caelyx has been the positive for me I hope it is for you.
If I can help with any tips for side effect do ask.
I will let you know how the trial goes best of wishes for your treatment,
Lorraine first off love the photo, good to see what you look like. Second, sorry I missed your original post from last week, so I still thought you were on Caelyx and here you were having all this going on with the trial. Yet you were so patient with me, correcting me that you weren’t on Caelyx etc. You are so kind. I’m glad the subsequent treatment was not as bad as the first one and am hoping this carries on for you and that it proves really successful. Knowing you have a good response to the Caelyx is a good back up option too, tho. Hope you are ok... xx Netti
Hi Netti, Always good to hear from you, I hope you are doing ok on this new treatment and that the side effect are minimal.
I'm ok this Tuesday will be the 3rd dose of the trial side effects are not too bad.
As for the photo all my life I had red hair this is a photo of me just before I lost it, now I have short curly grey hair and when I look in a mirror I think this is not me.
I decided to post a photo becourse for the last 3 years I have corresponded with some amazing ladies some who are not with us to day, when you see a face with the post it just gives that little more intimacy and you feel you know that person.
Take care my friend keep us informed about your trail,,,Lorraine xx
Dear Lorraine, somehow I have only just seen this and feel so much for you...you are being so brave undertaking the trial in your particular circumstance...especially being in pain and at the same time agonising about caelyx.
You obviously have done what you think will be best but its natural that you will second guess it...you thought carefully though....we know you did
sorry this disappeared before I had finished....but glad I had to look again as I saw your most recent positive replies(!) Keep going girl and do hope the side effects continue to reduce or be manageable....like others I am grateful to you for participating and also loved seeing your photo. Keep going and hope the Caelyx will be made even more effective! Much Love and virtual hugs Chris xxx
Hi Chris, Thank you as I said I don't feel brave at all and hope I am doing the right thing going off chemo but my oncologist felt it was a good opportunity and I am being well looked arfter.
Tomorrow will be my 3rd dose of 6 then if all is alright I will go back on Caelyx and hopefully the new drug will make the cancer more sensitive, how great that would be for all us ladies who have a recurrence.
I'm still a bit vain all my life I had red hair, this photo was taken just before it fell out now it's curly and totally grey.
Hope you are well as can be take of yourself ,,Love Lorraine xx 💙💙
Thanks Lorraine....you are nearly through(!). Hopefully it will make the Caelyx work really well and thanks for all the info you have given me about this! Love C xxxx
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Results today - 2nd reaccurrence 
Happy Birthday 🥳 and Oncologist update.....
First of 6 caelyx/carbo today. 
