HI Ladies, well it's been 7 weeks on the trial drug as I said this is the first phase of the trial to found out the maximum that can be tolerated, then the drug with chemo.
I've had 5 different chemo the last 3 years and managed to finish each treatment,
but this drug has been the hardest so far it's every week and infused by a IP port.
The first 3 week I had pain on the day of infusion till the next day but from then on, it got worst week 4 pain and diarrhea and fatigue, week 5 pain and diarrhea and vomiting at the same time the drug was building up in my system.
I decided to stop but when I went to the trial day I decided to keep going , I should have STOP ended up in hospital for 3 days and to-day is just over a week and I still am finding it hard to get out of bed for too long .
I told the prof I felt like I was letting them down but He said that they had got valuable information from my blood samples and the fact the dose needs to be adjusted. I asked what and it showed from my samples, the drug was affecting my stomach and kidneys and that is why they had half the dose last time.
If I had continued I still had 12 to 18 weeks to go, I thought about it and 18 week of this fatigue, where do I stop I need some quality of life.
I hope this drug proves to be all they hope it will be it's armed at recurrence in ovarian cancer.
I go back next week to get the IP port out and then back to my oncologist, this will be chemo carbo/caelyx , I know my 125 is going up but I need a break from all treatment. Who know the 6 treatments could help when I'm back on chemo they don't know how this drug will work. Take care all Lorraine xx
PS.. if you are interested in reading about the drug I've posted the information
HI Nancy I'll never give up till I have no more options, I'm just a bit tired I've been on 5 different chemo in just over 3 years with no decent break.
My oncologist wont'ed me to try this trial with the options of going back on carbo/caelyx , this has proven to be a good combo for me in the past, so we will try it again and then caelyx as maintenance,
I just need a break first I'll see her next week.
💙💙 Thank you for your concern take care Lorraine xx
I get the need for a break. It'll give you mind a much needed holiday. 5 different chemos in over 3 years -- someone needs to give you a badge of courage.
And then you'll be strengthened and ready to take on whatever is in front of you.
Thank you Nancy but you know my daughters are always saying how brave I am it's not that, it' simple I'm do not won't to die and chemo is keeping me a live.
I really admire your staying power I’m a real wimp with side effects. I love the idea of a trial in some respects but my worry with a phase one dose dense experiment is that it can make things worse. I’d prefer a phase two. Although MOV18 is phase one not that I’m any the wiser about it
Have you considered other drugs that are less commonly used but are available without so many unknown risks?
I read an article about a German trial that you can apply for through your oncology team to be administered under control conditions in your own country if there are enough candidates. I will see if I saved it.
Good luck with your next treatment choice. What are you hoping for from the chemo regime?
Hi Lily Ann ,Some would say not staying power but stubborn. I think the next phase will be a lower dose , one of the reasons I stop it was effecting my kidneys and the one thing I had going for me in all of this is my organs are not effected by any chemo.
I think I'll stay away from trials for now and as my oncologist said go back on carbo/caelyx I see her on Monody.
So sorry to hear you ended up in hospital. As the trial dr said they have learnt valuable information so don’t ever feel you have let anyone down . I am sorry the trial did not work out for you and can understand how disappointed you must be but stay hopeful . It may have just done enough to make your next chemo more successful to give you a longer remission .
Hope you start feeling stronger soon and let us know how you get on
HI KIm, Thank you Kim yes hospital at any time is not a happy place except a birth. we don't
know it may help when I go back on chemo as I said I need a break I'll see my oncologist Monday and Tuesday get the IP port out.
Take care Kim ..Lorraine xx💙💙
Hi Lorraine, you are one fantastic lady. You are an inspiration to keep going on the despite the side effects. Perhaps a break will give your body a rest and who know your CA125 may even improve. Good luck on the journey.Una
Sometimes a rest is as good a therapy as treatment. When I went to the US on my fab family trip I was off treatment in the midst of weekly chemo for 6 weeks. My CA125 actually went down by quite a margin for this “off chemo” time, and I think it was because I had a lovely rest and good times with my family. So if you feel you need a rest go with that, Lorraine, and please do not burden yourself with any feelings of letting anybody down.... they are lucky you agreed to take part in a tough trial.
Hi Netti, Good to hear from you, How is your Trial going? Yes a break will be good looking forward to it, at the moment still not feeling the best but by April I hope I will my husband mothers turns 90 and we would like to travel up to see her.
Hi Lorraine. Trial is going fine but I won’t know until after my scan on 5th April whether it’s working, so I just keep taking the tablets. Hope you get up to see your mother in law and keep recovering after your trial. Xx
Hi Lorraine. You are simply amazing. I couldn't do what you have done. Please give yourself a break and let your body recover somewhat so you will have the strength to go back on chemo. and Quality of life is important. I know many of us are scared of dying, but at some point, if we are born, we all have to go. I try to think that it's just like going to sleep! I am more scared of what you are going through! I think that takes more courage. You will never let anyone down and have helped many women already going on a clinical trial. Sending hugs and prayers and hope you feel better soon
Hi Tara, You will find the strength when you need it , on this site in the last 3 years I have corresponded with some amazing ladies who have give me inspiration to keep going and you will also.Take care of yourself love ..Lorraine xx
Hi Lorraine, thank you for doing this phase I - for all of us. And being so forthright about the symptoms. The article was helpful too. I echo the ladies, you are very brave indeed. Well done and I hope you get some well deserved rest.
Hi Valerie, I think phase 2 will reduce the dose, the trial team are very excited about this drug but it has to be proven safe before it can be approved, as we know ovarian cancer has a high risk of recurrence and if this drug is successful will be a great help.
I"m so looking forward to this break before going back on treatment ,who know the doses Ive had might help. Take care of yourself .Lorraine xx
Lorraine, you have done amazingly, and have helped to shape future trials of this drug. Without pioneers like you, new therapies would never get off the ground. You deserve a little break from it all. I truly hope it has helped to sensitise the cancer to chemo and that you will have a fantastic response to your next line of treatment. Vicki x
Hi Vicki, Thank you, I am looking forward to a no treatment break and yes who knows the doses I've had may have sensitize the cancer to my next treatment.
I hope the trial is successful as ovarian cancer has a history of recurrence.
I hope all is going well with you take care Lorraine xx
Fingers crossed the six treatments do help when you go back in chemo. You did well to tolerate such severe side-effects and it will surely help your team to tweak the dose, etc.
Hi Linda, Thank you, it's over a week since I stopped and I'm just now managing to stay out of bed all day, Tuesday I get the IP port out that will be good and a nice break be for treatment again. Take care of yourself Linda..Lorraine xx💙💙
HI Linda, Feeling a bit better to day had my IP port out and managed to make some lunch for my husband he has been so good doing all the cooking and washing
plus go to work. 3 weeks before treatment begins so I'll enjoy the break.
Look arfter yourself and keep in touch,,Lorraine xx💙💙
Hi Anthea, Maybe not so much brave as stubborn, yes the rest will be good I'm feeling a bit better to day manage to make lunch for my husband he has been so good doing all the cooking and house work plus go to work.
lorraine....you've done superbly...am sure you will be pleased to be back on the caelyx combo. Thanks for going on the trial...hope it helps with the chemo for yourself! Love Chris xx
h Chris, yes I will be please to be back on treatment I know my 125 is going up, last test was 175.that was 3 weeks ago, I go back to my oncologist on the 5th march and I'm sure it will be carbo/caelyx. How are you going? Take care Lorraine xx
Hi Lorraine--I did a trial also where I had such terrible fatigue I felt like flat roads were very steep hills. Going up stairs was a major challenge. It didn't work (ca125 kept climbing) and I just wanted that break that you are now going to get. I then went on Carbo/Caelyx (Doxil here in the U.S.) with good results. I don't think you need to rush into your next treatment so hopefully the break you will get will give you your strength back and you will then be on treartment you are familiar with, which could be helpful mentally (as well as physically). Wishing you luck and the return of your strength very soon (and hoping you can make your mother-in-law's 90th!)
Hi Judy, The fatigue was bad I could not get from one bedroom to the other , it's been just over 4 weeks and I'm now starting to feel a bit better.
I know the break will do my body good but my head worries about my 125 going up.
We did go to my mother-in laws 90th, the drive from the blue mountains were we live to the gold coast was 900km about 9 hours a long drive, my husband did enjoyed seeing his family.
Thank you for your wishers hope you are ok..take care Lorraine xx💙💙
I am on the Cantrixil trial. I have had 5 treatments so far and will have number 6 and a scan next week. May I ask what the results of your scan were? Did it seem like the drug was working. I think the IP method is harder. They reduced the amount of fluid infused and that seems to help. I have some nausea and sometimes pressure on my stomach that causes me to throw up. That is usually on treatment day, then just mild nausea the rest of the week. If the scan doesn't show good results, I am thinking about going back to traditional chemotherapy and getting rid of the IP port.
Hi. I had 7 week and found it hard the IP port was hard I could feel it when I walked ,also had very bad pain on the first day then it ease, I came off week 8 as it was effecting my kidney I went off it, went back on to carbo caelyx for 3 doses and now my oncologist has tiold me the chemo has stopped working, so she feels she has no options left as I've had quite a lot off Chemo in the last 4 years I'm too weak to see about trials and I feel the same at the moment.
She has booked me in for palatine care, I feel lost as I'm now on no treatment and my 125 is 1500.
Are you in Australia?
I'm trying to get my strength up and maybe see a second option. I hope this trial gives you good results take care Lorraine xx💙💙
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