My Ovacome
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Update this is my 6th line of treatment Carbo/Caelyx

Hi Ladies yes I/m back on Carebo/ Caelyx I had it for 5th line with good results, then went on a trial and had to come of chemo the trial drug if it works make cancer more sensitive to chemo, so I've been of chemo for 3 months this trial was the hardest treatment so far, my history over the last 4 years as soon as I go off chemo it goes up that is why my oncologist thought The trail would be good for me.

I went to day for my 6th treatment Carbo/Caelyx as this has proven to be a good combo for me.I'm booked in for 5 treatment one every 4 weeks so here I go again hopefully the trial might help..Take care ladies..Lorraine xx

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You are so strong Lorraine! Good luck with this. I hope the trial makes the treatment even more effective. All the best to you xxx Netti

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Thank you Netti, You know I'm no stronger the you or the other ladies we all just keep going I must admit yesterday when I was having the Carbo/Caelyx I did think what am I doing but I feel I had no choice hopefully the trial drug might help..Take care Netti ..Lorraine xx

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Hope you are home and recovering after your chemo. Take care xxx

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Do hope this next lot helps you, Lorraine. You've had to have so much of the hated Chemo. Thinking of you, keep smiling, love, Solange 😊

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Hi Solange, Thank you yes in the last 4 years I've had quite a lot of different chemo treatments but as I said Caelyx had been my most successful . the thing is the cancer eventually stop the chemos from working, that is why the trial drug that I was on hopes to make the cancer more sensitive again, this is aimed at ovarian cancer recurrence.

Take care Lorraine xx

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Good luck lorrain, I hope this one will do the trick. X fiona

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Hi Fiona, Thank you I hope you are a lot better and manageing Caelyx also that you have your bowl blockage under control.Take care Lorraine xx

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Thanks Lorraine, I think Caelyx seems to react more slowly than last years carbo/taxol as I'm on day 11 and its hit me quite hard yesterday and today, just tired and very achey oh and have woke up with a mouth full of ulcers not good when not eating well anyway.

I'm still very nervous about eating so not putting on weight so have been googling low fibre receipes, bit sick of fish and chicken, would love a huge burger.😂

Take care Fiona x

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Wishing you all the best and hoping the trial drug does its work and makes the chemo more effective.

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Thank You Helen , I've had Caebo/Caelyx yesterday it will be interesting to see if the trial drug helps. I was on the first phase of the drug

it was to see the dose that could be tolerated it was hard the, next phase will be a lower dose this is trialed on other ladies, Take care Lorraine xx

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Good luck Lorraine. I really hope this does the trick. I am full of admiration for you - as you know I’ve been a whinging mess on my third line treatment so good for you to keep going.

I hope it doesn’t leave you feeling too bad xxx

Becky.

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Hi Beckyn, Thank you, it;s normal to worry and be a mess I am a mess each time I need to go on treatment I think I've had so many now it feels normal to be on treatment we just have to keep going, I have my days and think I should stop but I have a lovely family and I what to stay around for as long as I can.

I hope you are in a better place now take care Lorraine xx

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Good luck Lorraine let's hope this chemo sorts you out. Best wishes Pam x

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Hi Pam Thank you, I hope you are still doing well and you did manage that holiday take care Lorraine xx

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I remember you telling us about this trial so really interested to see if it has worked for you. I'll keep everything crossed for you that it has. Please keep us in the loop. You always do so I don't know why I'm asking to be honest. Am running on vapours now, despite the steroids for the last two days (which I wasn't supposed to take) and I've just eaten 8 chocolate biscuits - with gluten - and given my boring gluten-free to hubby. Piggy or what? I'll suffer tomorrow but am I bothered? Much love Kryssy xxxxxxx

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HI Kryssy, I had my Caelyx /Caebo yesterday this will be every 4 weeks so I expect if the trial drug is going to help it will be a couple treatment at lest before we know, I will let you know the results.

I was sent home with 3 days supply of steroids and to day I'm going to my part time job before I run out of steroids. also the chocolate biscuits sound good, Take care love Lorraine xx

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Hi Lorraine---I guess you will know if the trial worked by how you do on this next round of chemo? You said it was hard so I have everything crossed--fingers, toes, etc. that it was well worth it. Glad you decided to do it again and with a treatment that has shown good results for you. Waiting for updates and wishing you smooth treatment. oxoxox

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Hi Thank you, I had the Carbo/Caelyx yesterday and if the trial drug is going to help I expect it will be a couple of treatments at least, I will let you know the results.

I hope you are still in a good place take care Lorraine xx

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Wishing you well Lorraine 🌸🌺 The trial sounded so hard! I really hope it gives you great benefits, helping the chemo to be super-effective!

Sending love from sunny (but still chilly!) England ☀️ xoxo

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Hi, Thank you for your wishes, I started treatment yesterday and if the trial drug helps I expect we will know in a couple of treatments I have Cardo/Caelyx every 4 weeks.

I will let you know the results, We are just coming into our winter through we do not have any were the cold winters you have.

Hope you are as well as can be take care Lorraine xx💙💙

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Hi Lorraine. I hope the trial drug boosts the effect of the chemo for you without boosting side effects!! I had a really good response to carbo/caelyx on my 3rd line and would definitely go on it again when needed. I've just started 4th line and my oncologist said to go back to initial carbo/taxol combi as I've not had it for 5 years. Can you tell us the name of the trial drug? Good luck! X

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Hi, Thank you for your best wishes ,as I've said before single Caelyx has given me good results and also Carbo/Caelyx I have had quite a bit over the last 4 years so hope it keeps working, as you know recurrence in ovarian cancer is so common this is why my oncologist suggested the trial for me.

I posted the information you might find it interesting..Take care Lorraine xx

kaziatherapeutics.com/resea...

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Thanks Lorraine I'll have a read later. X

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Sounds very similar to me Lorraine. I’m in WA and I think u r also??

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Hi, I live in the blue mountains NSW at the moment it is 3.3o am I had my treatment Thursday and went home with some steroids so at the moment I can't sleep.

The plus is I managed to go to my part time job to day..Take care Lorraine xx

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Good luck, x

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Thank you for your best wishes, hope all is as well as can be with you..Take care Lorraine xx

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Hope all goes well for you Lorraine and all that hassle with the trial was worth while will be keeping everything crossed for you ❤️

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Thank you Cathy, I had my first carbo/caelyx yesterday if the trial drug is going to be off any help it might take a couple of treatment before we know, I was on the 1st phase of the trial and it's very early days .

I've posted the information about the trial if you are interested..Take care Lorraine xx

kaziatherapeutics.com/resea...

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Hi Lorraine

Really hope your treatment goes well, with great results.

Fingers crossed not too many side effects. Xxx

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Thank you for your best wishes, It's 3.30 am here I have my hit of steroids and can't sleep the plus is I did go to my part time job to day and my boss was very impressed with my effects..hope you can continue with the Carbo/ Caelyx but if not as I said I had single Caelyx with good results take care Lorraine xx

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Best of luck and you are doing amazing. Kerry x

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Hi, Thank you Kerry for your best wishes , I read one of your post where you asked about treatment I notice in just the last 2 years there are more new trial for ovarian cancer this is a good thing lets hope they show good results.

We do have option when it come to treatment lets hope we have more, It's true some country seem to have different treatment here in Australia we seems to be up with US and the Uk .

Ive post the trial information I was on if you are interested..Take care Lorraine xx

kaziatherapeutics.com/resea...

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Good luck Lorraine . Hope you tolerate it well . Wishing you all the very best xxx

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Thank you fore your best wishes,I hope you are feeling better now about the out came of treatment remember there are so many options for treatment and more trials all the time.

My oncologist told me the other day she is seeing my people living longer then even a couple of years age, I'm a good example when I was first diagnose I was told I would not see the year out I'm still here 4 years on, not always been easy but I still here and hope to continue for quite a while..Take care Lorraine xx

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Let's hope the Cantrixil did the trick and caelyx works as expected for you... with a better quality of life than during the trial.

Phase 1 is allegedly often tough as they try to find out how much of it can be given and is effective, without killing the patient.

Where you get the strength from, I don't know.. but I hope you keep going and writing here. Hugs from Germany.

Maus

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HI Maus, Yes the 1st phase was hard I had to stop because the dose I was on was starting to effect my kidneys, the last dose they cut down now it goes into phase 2 this will now trial new ladies.

I don't know if I would call it strength or just stubborn.

I posted the information about the trial if you are interested..Take care Lorraine xx

kaziatherapeutics.com/resea...

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Best wishes on your treatment success! You are a real fighter; a truly courageous spirit! I was on my 6th year of chemo when I was put on a trial for Olaparib; five years later, I'm still in remission! I hope you have the same luck! 💖Margaret

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Hi Margaret , Thank you for your best wishes I'm so glad arfter 6 years of chemo you are now in a good place, in 4 years this is my 6th treatment I feel like I'm on chemo all the time with small break my history as soon as I stop chemo my 125 jumps up, so it would be great to have descent break. I hope your remission continue for many many years more ..Take care Lorraine xx

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💖I know that feeling! My CA125 used to pop back up after every course, too. hoping! You may get the break from Chemo you so richly deserve! 🙏

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Thank you Margaret, for the information about your 125 going up arfter each chemo I thought that I would just have to keep on chemo till it stopped working , your post gives me some hope.

After this treatment my oncologist suggested Caelyx in a lower dose as maintenance she also said that we could try a pro inhibitor I'll ask her about Olaparib, the thing is some of the pro inhibitor not available here in Australia but will look into it. ..best wishes Lorraine xx💙💙

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Lorraine I have tested positive for Braca 2 gene so if my scan is clear maybe starting Olapirib in a couple of weeks My Oncologist tells me I will be the first one in Rockhampton to have it for Ovarian Cancer in the public system anyway It is now on the PBS for Ovarian

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Hi Cathy. Thank you for that information, I was just on the computer and looking at Olapirib here in Australia so far it's only been approved for Braca gene only, I did find a trial at Camperdown hospital for a trial for non braca gene, I'll finish Carbo/Caelyx but will still talk to my oncologist, I learnt over the last 4 years you have to be proactive in your own treatment. I hope you have great results with Olapirib..Take care Lorraine xx

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Yes Lorraine you have to have a BRCA variant either in your blood or tumour tissue to get olaparib on the PBS. I'm about to get my tumour tested (I don't have it in the blood). I think in the future they will extend the parp inhibitors to non-BRCA patients too, as it looks like some of the parps are having beneficial effects for a wider range of ladies.

Cheers, Dawn

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Hooray! I'm on year 5 Olaparib, in remission! I hope it works as well for you☺️

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That’s great what side effects have you had

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Nausea, fatigue, changes in kidney function tests, changes in platelet size & number. None as bad as chemo side effects! Generally, I feel pretty good!

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Hope the Cantrixil has made those cancer cells want to die horribly when they are shown a bit of Carbo/Caelyx. Thanks for posting the link to the results.

All the very best, Dawn

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Thanks Dawn, Hope so too the only problem is I did not finished the whole trial only 6 weeks it was meant to be longer, the dose I was on first phase was effecting my kidneys fist phase was to found the right dose but could still help. Take care Lorraine xx

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Lorraine, I never realized how first phase effects the patients. I'm learning so much! Anyway, wanted to thank you for your efforts in taking part of the study. Has your kidney function improved?

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Hi Nancy. Yes my kidneys have improved but my liver was a bit high so had to wait before I could go back on chemo, this worried me some as my 125 had gone up to 320 I had my first treatment Tuesday. The first phase was to find the right dosage that can be tolerated phase 2 might reduce the dose depending on the other ladies in the trial. Sending my best wishes and glad your husband found us.. take care Lorraine xx

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Wow, you've had such a tough experience with everything, I did paxitroxil, carboplaten and cysplaten. Intreperitinel chemotherapy with IV chemo. Maybe your Dr will let you try intraperitinel chemo

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Hi Liz, Yes this is my 6th treatment in just over 3 years ,I've had carbo/taxol twice then single Caelyx gave me some good results but as I've said my history is as soon as I stop chemo my 125 goes up, 5th was pxitroxil this did not help my 125 went to 1300 in a matter of weeks, my oncologist then gave me Carbo/Caelyx with good results 125 came down to 54.

Had a break of 3 months for a trial and now my 125 is 240 so just had my first treatment of Carbo/Caelyx this has proven to be the best treatment for me as long as it keeps working, I must admit some time I feel my hole life revels around chemo with just a few small breaks.

I will mention Intraperitinel to Amanda my oncologist.

Thank you for your concern, I read your post glad you are doing ok.. take care Lorraine xx

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Well done Lorraine! Chris x

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