Hi ladies I've just had my 4th treatment of the trial drug it is given as an infusion via a port located in abdomen, fist the drug then 1 liter of fluid I can hardly get off the bed I'm so full. I now have 2 posts one in my chest and on my rib, I feel like going into a service station drive in and fill up.
A few hours arfter the infusion I'm hit with terrible pain that last through the night I don't know if this is the drug or all the fluid washing around in the cavity of my abdomen, has any one else had a IP port and how did it feel?.
I'm so glad I only have 2 more as I don't know if I could continue, I'm not sure the next step I read the notes again and it seems that arfter the 6 treatment it's a scan then it's the drug and chemo together, if this is right I don't think I could handle that my oncologist said I can drop out at any time and go back on Caelyx, which has been good for me,
Hopefully the trial drug will do some good in making the cancer more sensitive to chemo I'll have a good talk to the prof doing the trial next visit.
Take care my friends we need some good results from these trials..Lorraine xx😀
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lorraine71-Australia
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I also live in Australia but on the other side. I feel for you and hope the pain settles with time and it will all be worth the while. You are absolutely right we do need good results from these trials... hopefully the other ladies will be able to offer some advice in the mean time hang in there. Sending a big gentle hug to you🤗
Hi Pauline I live in Albany but have my treatment from SJOG Subiaco in the Ivy Suite. Spent 7 months in Perth having my treatment last year until Feb this year. I follow most of the ladies here and have gleaned a huge amount of info and experiences .. I firmly believe that knowledge is power!!
I’m going well thanks Lorraine.. had a CT and bloods a few weeks ago and all good😊😎
Hi Lorraine. A couple of things crossed my mind as I read your post. Is the Cantrixil bringing your CA125 down? Also, when caelyx was giving me a very hard time, my onc reduced the dose by 10%, which made it bearable; I still went straight into remission, so the reduced amount didn't reduce the effectiveness. Could that be an option for you? Wishing you all the very best. Pauline.
Hi Pauline, Nice to hear from you hope you are are well as possible.
The Cantrixil is not a chemo the idea is if successful when I go back on Caelyx the cancer will be more sensitive to chemo, my history is as soon as I go off chemo my 125 goes up it's now 140 becourse I've been off chemo for 4 month to do this trial,
I've never been in remission so hope it works and gives me a break of chemo.
When I was on Carbo/Caelyx the dose was drop 10% and handled it well.
HI Callmemun, Becourse I had to go off chemo to go on the trail my 125 at last weeks check it's gone up to 145 this happens when i go off chemo, so if this drug works when i go back on caelyx the cancer will be more sensitive to the chemo I'd love a break.
Best wishes to you and your special person hope she is ok..Lorraine xx
Sorry to hijack but that's a brill result CallmeMum. I wonder if I'll ever get that low - doubt it but you never know. It's just a number at the end of the day xxx
G'day Lorraine. I remember you being quite excited to start the trial and I am keen to know the results. I'm not at trial stage yet, if there is such a thing. I don't ask enough questions to be honest. I hope you are coping mentally with the pain and that it is all worth it in the end. Good luck with it. Big love Kryssy xxxxx
PS When you have finished with the sun can you send it to France please. Ta muchly xxx
Hi Kryssy, The good thing at the moment we do have trials in the pipe line for us this can only be a good thing.
I was going ok till last week a few hours arfter treatment the pain hit and I wondered was I doing the right thing, then the pain eased off and I felt better.
I'll keep going hoping we get good results.
You would not won't the heat we have been having, my poor garden has been sun burnt luckily the last couple of days has it's been overcast and a lot cooler.
I think you and I are very similar Lorraine except that sadly you have had one lot of chemo already and now on your second. But I'll catch you up, don't worry. I'm just enjoying a few weeks of freedom and hoping the Avastin is doing a good job before I start all over again. I have a lot more energy now and no pain, except for old age pains, but I have got very achy arms at the moment. I thought it was from carrying a couple of heavy bags last Friday but it's a week now and they still ache but I can reach for a glass of wine without much difficulty so all is not lost. I'm thinking maybe I should sit down with someone to go through all my paperwork and tell me exactly what I have as I don't understand some of the words the girls use like, serous and BRCA and single cell etc. Trouble is, all my paperwork is in French so I can't be bothered to translate it all if I'm honest. Sometimes, especially with me, knowing too much is a dangerous thing and the less I have to worry about the better. I'll let the medics do the worrying and I'll just get on with living for the moment. I get the pictures out for friends and family if they ask and they say it all. Shrinkage and disappearance are words I do understand and I can see where all the cancer still is but it doesn't seem to bother me so much any more. Like you, my CA125 was 126 last time. Got to wait until April to get the next one unless I have a dark moment and ask the GP and he's happy to give me a docket to get it done if I ask but I don't want to know at the moment. Am I being a bit head-in-sand?
Anyway, all the best to you and we'll see how this year pans out for us. Let's hope it's a good one. xxxxx
Hi Kryssy, I've had 5 different chemo in 3 years with Caelyx being the most successful for me, When i was first diagnose 3 years ago my 125 was 2700 it's gone up and down from 57 at it's lowest to 1300 10 months ago Carbo/Caeylx get it down to 57 just before I went on the trial, it's now 145 in 3 months as soon as I finish the trial I will go back on Caelyx.
I must admit I do watch my 125 as I don't have too many side effect and only know it's on the move when my 125 goes up but I understand ladies who prefer not to know.
I've never had Avastin have head good thing about the results hope it give you
great results.
As for knowing some of the terms used just ask your in the best place to find out I've learnt so much from our lovely ladies.
Lorraine thanks for the update. I guess you won’t know how well it has worked till you have chemo, but it is a boost to know you have this extra layer of support inside you.... take care xxx Netti
Hi Netti, It would be great if it's successful.I'll keep you up to date the whole trial is aimed at ovarian recurrence and we know this is quite common for ovarian cancer.
Sending you a big hug and hoping the rest of the trial goes smoothly and they can do something to make you more comfortable . And you go in to get great results from the chemo .
Oh Lorraine that treatment sounds really tough. Hopefully your prof is confident there will be a positive outcome for you. You don't say how often you have it and whether you are in hospital? Also what phase is the trial? You sound pretty determined but remember you have a choice and you don't have to put yourself through this if it's too much. Some trials are not right for everyone .
Hi Elizabeth, Both my oncologist and the prof doing the trial are excited about this new drug,my oncologist thought this was a good opportunity for me as I've never been NED or any where near it in 3 years, as soon as I go off chemo the 125 goes up a very good indicator for me.
This is phase 2 next will be stage 3 it's being trial at 3 hospitals here and 2 in the USA.
I have been told that I can stop at any time, I'll do the last 2 hoping the results are successful. Thank you for your wishes take care Lorraine xx
Sounds like it’s a really good trial for you - and that you have a great team around you. So hard that the treatment is such tough going. Ii hope the next infusions are a little easier on you and wishing you very well for eventual remission
Hi Lorraine, gosh Lorraine you are so upbeat & brave! It sounds as if you are having ground-breaking treatment. It's wonderful that scientists & doctors are pushing forward with all these chemicals! They are powerful too - poor you, feeling so rough. Did your Consultant anticipate that pain? It may be the water, as pressure causes a lot of pain, even small amounts, as our bodies know its something different. To spur you on - you are over half way!! 🙂 🎉 Sending hugs & all good wishes & cheering you on!! Linda xx 🌺🌷
P.S. Lorraine, did you ever have surgery or is t not possible for you? P.P.S. We are going into a cold/icy spell here!
HI, I don't know arfter you told me I had a look , I tried to post it again and when I hit save the photo goes,I'll try and get in touch with the technical team , I put my photo on my post arfter being on here for quite a while it was nice to put a face to the ladies I am corresponding with, I know some ladies don't wont to and that's ok .. Cheers Lorraine xx
Hi Vicki, Thank you for your wishes I did ask one of the clinic nurses and she feels it is more the liter of fluid in the cavity not the drug, I will have a better talk with the prof on Tuesday before treatment, Take care Lorraine xx
Well I just wanted to say thank you Lorraine...women like you willing to go on trials are very brave and help all of us in the long run. It sounds quite unpleasant but I hope the nasties leave you alone soon xx
Hi Lindy, Honestly I don't feel brave I'm worried all the time if I'm doing the right thing,being off chemo but as you said we need research my oncologist was excited I was offered the trial so here I am 2 more to go. Take care Lyndy..Lorraine xx
Are other patients on the trial experiencing the same pain? Is there a drug your onc can give you to help you through that first night. I had a look at the trial and I think you're right that after these initial six, you then have some with the chemo. In which case I think the pain needs sorting.
HI, we have 3 hospitals here and 2 in The USA doing the research I'm in phase 2, I think each hospital has only one Ginny pig in this phase, This phase is to see how you tolerate the dose the next phase will have a higher dose. I asked the doctor that put in my IP port how many she had done and she said 2, I was her second one it's not used a lot here in Australia.
As I said I did read through the report and it does continues arfter the scan, I don't know what they expect to see on the scan these are questions I'll ask the prof on Tuesday.
As for the pain I take Endone it helps a bit
How is the Taxol going hope you get the good results.
Three more to go. Definitely a little tired now, been trying to ignore it but getting more difficult to do so. I’m greatful I don’t have any pain. Hope they can sort that’s for you.
Hi Lorraine, I also am an Aussie girl. There are a few of us on here. As I asked you before about your trial it is good you are keeping us updated. I had two ports initially when I did my first round of chemo. As I did IP chemo. I am well into my trial which is making me feel quite ill. I am crossing my fingers it works. It is BGB-a317 and BGB-290. Immunology and Parp inhibitor. I will keep everyone updated when I know more. I spoke to my oncologist about your trial and it isn’t one he recommended for me as I didn’t handle my IP too well at the start. Hopefully it will do a good job for you. Keep us posted. Sharon
Hi Nicky, This trial in not chemo the drug if successful is aimed at ovarian cancer recurrence, I had to come of chemo and arfter 6 trial drugs I will then go back on chemo the idea is that the drug Cantrixil will make the cancer more sensitive to chemo as ovarian cancer is knowen for recurring.
Hopefully it will put me in NED or at least give me a good break from chemo, as my history is as soon as I go off chemo my 125 goes up.
The trial is being trialed at 3 hospitals here and 2 in the USA.
Hi Lorraine72-Australia. I did have IP(chemo tho) at Ivy Suites SJOG. It was uncomfortable but eased over the next few days. I had similar scenario of chemo not working and then did a combined immunotherapy PaRP inhibitor trial. Went into organ failure😧And had to come off trial. Long priced of difficulty But had same hope it might 'open' my system to get some benefit from Chemo. I'm now on Caelyx/Carbo and (other than the chemo week )I'm feeling well.CA125 down to 9 last count. Don't know what scan will show. I hope this gives u some hope. Would be nice to connect at some point! This group is so wonderful, supportive and informative.💚🙏💪🏼🤞
The nurses weregreat with helpful With managing the discomfort. I hope u r finding this. Are u on ward 35 or outpatient?xx
Hi, I'm finding the IP port uncomfortable when I walk too lone or sit up for a long time it's place right on the end of my rib case.
Sorry you had to to come of treatment but I have had quite a lot of experience with caelyx as single treatment 6 rounds, the Carbo/Caelyx 8 round I had good results.
Your 125 is great I've never been lower then 57 so hope your 125 is a sign every thing is ok.
I'm at Westmead Hospital and live in the Blue mountains Sydney keep in touch take care Lorraine.xx
Hi Lorraine. Just wanted to send you my very best wishes for this trial. It sounds very tough and even though you don’t feel it, you are a brave lady to pioneer new treatments for our benefit. Love Jo 🌺🌻🌼🌹🌸
Sorry to hear you're in so much pain Lorraine. Is there nothing they can give you to help ease it a bit? The good news is that it's nearing the end and you will be on the way up. Lots of things to look forward to. Send you all the best. Zena x
Let's hope that helps, Lorraine. Nothing worse than being in pain all the time.
I'll get my results next Friday. They've brought my six monthly appointment forward so they can discuss the results with me. I'll post when I get them. They said they would send the results through the post so I'm guessing there will be something to discuss as they've changed their minds.
It's a beautiful day here today but snow is expected for tomorrow. I'm glad I have no plans to go out.
HI Zenaj, Hope the news on Friday is good, sounds like it might be interesting if they want to discuss it with you, do let us know..Take care Lorraine xx
Hi Lorraine glad to hear you only have 2to go let’s hope it works some magic for you I have another weeks reprieve then back on chemo has been nice having a little break Sorry to hear you have so much pain with it let’s hope it’s worth it Sending lots of hugs 🤗
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