Hi Lovely ladies, So far my treatment of Caelyx and Carbo is going well, 2 more to go.
My oncologist has suggested Caelyx on it own as a maintenance treatment, I would like to know if any one has had or is having Cealyx as maintenance for how long and the results.
Thank you all as usual...Lorraine💙💙
Hi lovely,
Found this hope it helps xxx
academic.oup.com/annonc/art...
Hi, Thank you sooooo much very interesting read. How is your special person?
I hope you both are ok....sending my heart felt best wishes Lorraine 💙💙
Hi lovely,
She's all good still annoying us but wouldn't have it any other way 😊❤️ Xxx
Hi Callmemum, thanks for this I didn't know it was a maintenance drug. I will read this thanks again. Take care Cindyxx
I used the dreaded DR GOOGLE! Don't do it!!!! Lol 😂 xxx
Hi Cindy, Just to let you know I don.t think that Caelyx is used by too many oncologist as maintenance, my original one thinks that 6 is the limit , becourse of the risk of heart problems .
The Prof who suggested it is my second opinion plus I had a second opinion about more surgery and she also recommended Caelyx as maintenance. Both have ladies on long term Caelyx with no problems one lady has been on it for 3 years.
The prof will send his suggest on to my oncologist so when I see her Monday I will discuss it with her, she good like that when I've asked for a second opinion she has been more then happy for me to see someone.
This is why I was asking on the site for advice so when I go on Monday I will have information to discuss with her as I would like to try it , as Caelyx seems to help me. I will keep you updated...best wishes Lorraine 💙💙
Hi Lorraine, I recall you mentioning Caelyx effecting the heart that's why I was surprise it can be used long term.
As long as it doesn't have too many side effects I can't see why not. I have been better on Caelyx than any other chemo so far.
It sounds as if you have a lovely onc that listens to you which is very important.
I hope someone on here can help you its all ways good to have as much information on a subject as possible so you know where you stand. Take care my thoughts go with & yes do keep us up dated love Cindyxx
HI Cindy, My understanding was that Caelyx was hard on the heart, I had single Caelyx as 2nd line treatment so was a little surprise when my oncologist put me on carbo/ caelyx as I said she is the one that always was careful about the amount I could have, the prof I've just seen is from one of our largest woman's hospitals so I am keen to discuss it with my lovely oncologist.
This whole thing is trial and error but this is how we will find a cure in the future hopefully.... Love Lorraine xx
Hi Lorraine you are so right everything is trial & error.
Going a bit deeper life its self is full of trial & errors.
It sounds as if you have a good care team behind you. Good luck keep us up dated take care love Cindyxx
Hi Lorraine. Two members of the support group I attend, have had caelyx as maintenance, both following the usual length of regime of carbo/caelyx. One of them had the complications of a previous bowel op. Despite around 15 months of caelyx alone, it ultimately wasn't a success for her. The other one I think has been having the maintenance since March this year due to the fact that the usual carbo/caelyx regime fell short of reducing her CA125 quite as low as hoped. Her CA125 is currently in the mid 20s I believe. It's been a gradual fall, but she's getting there ! Good luck. Keep warm in the blue mountains. Best wishes. Pauline.
Hi Pauline. Thank you and nice to hear from you, yes it has been cold I think the winds make it worse because they come down from the snow fields. but spring is not too far off.
sending you my best wishes look after yourself..Lorraine💙
Hi Lorraine, you are often in my thoughts.
I didn't know it could be a maintenance drugs. Good luck if that's what they decide for you. take care Cindyxx
I'm being thick here but does maintenance drug mean that it's not effective to decrease the cancer but rather just keep it at the level that it's at at the moment?
My Mum has just been prescribed caelyx alone for her 2nd line (recurrance <6 months after 1st line Stage IV), she's not platinum resistant so I'm wondering why she's not been given carbo with it as well. Does anyone have an idea? Sorry to hijack your thread lorraine71
Hi Love, My understanding of a maintenance drug is just that if this comb I'm on does not put me into NEDs then the maintenance will keep it stable and later on new drugs or I can try carbo/with some other drug.
I'm on Carbo/Caelyx and doing well on it but with my history as soon as I go of chemo my 125 goes back up this is my 4 line treatment in 3 years.
I had single Caelyx as second line and had good results, I took a break from chemo and it started to go up again. had 3rd line now 4th line this combo is going really well for me, as I said with my history the prof suggested the Cayalx as maintenance, who knows this combo might just be the one to give me a good break, I have 2 more to go .
I think that they will try the single Calyx for your mum as it can have good results on it's own the Caelyx/ Carbo is always a option if they need to use it.
We are all so different in which chemo will help I hope the Calyx is the one for your Mum. Best wishes to you both Lorraine 💙💙
Dear Lorraine,
Thank you so much for your reply, you really cleared it up for me, you told me more than the oncologist did!
God bless you, I hope you get a good night's sleep xx
My understanding, since she recurred less than 6 months after her first line, is that she is considered to be "platinum resistant" - that's how they determine someone is. Hoping she does well with the caelyx.
Hi Mac27 I was under the standing that she recurred 6 months after treatment and not "Platinum resistant" my oncologist said that this can change and carbo can be used again at a later time.
I think they are learning all the time about ways to treat this oc, so it can only help us all in the future .lets hope that day is not too far off....best of wishes Lorraine xx
we'll have to see what BiscuitQueen has to say!
Hi Mac, this is one of the things I like about this site corresponding with people around the world. I'm in Australia it's 5pm Sunday after noon on a cold winter day.... Cheers Lorraine.
It's a she.... it's the user name of one of the women in this conversation! Thanks for giving me an early morning chuckle. It'll be warming up before too long.
Hi Mac, Yes of course she is the lovely daughter asking about her mum, I hope I helped her the information I gave is my understanding from my team. but as always any advice should always be discussed with their team, Glad I gave you a morning chuckle, Cheers...Lorraine
Hello there lorraine and Mac! I did wonder why you were up so "late"...Now I see that you're in Australia! She recurred just under 6 months and actually the oncologist didn't say anything about being platinum resistant so I just assumed she wasn't, I stupidly forgot to ask that but whenever I don't know something, I tend to find out on here first because the lovely ladies on here tend to be more knowledgeable and willing to impart their wisdom!
Thank you both for your replies, maybe because my Mum is on the cusp of the 6 month recurrence, she hopefully has the option of carbo...She had a bad reaction to Avastin so the thought of another drug been crossed off the list is disappointing xx love to you both Lorraine and Mac
Hi Lorraine,
(sorry if my sharing turns out to be long)
Im new to this forum and i have read what you share here and i hope you are feeling much better now... I also hope you can give me some advise, if it is not too much to ask 
My mum was diagnosed with Ovarian cancer in 2012, she had her uterus and ovaries removed and had 6 sessions of Taxol/Carboplatin chemotherapy and Thank God she got cured.
Unfortunately in October 2017, the Ovarian Cancer came back and was much more aggressive and spread all over, she resumed the carboplatin/taxol chemotherapy and added to that was Avastin.. she then had a very bad reaction to carboplatin on the second chemotherapy cycle and the doctor stopped it and continued the remaining 4 only taxol and avastin, and thankfully she had her CA125 drop to 5.3 and then up to 12.3 and is now stable.
After the 6th chemo cycle, the doctor said we should continue a year solely of Avastin as a maintenance drug, but unfortunately after two time of Avastin she had a rash and a lot of scratching.
However, my Mum underwent a CT scan and it showed that there is no change since her first CT scan in January 2018, she has a tiny cyst on the liver, cyst on the left kidney, mild acititis, peritoneal nodules representing carcinosis, and the doctor said he would continue with either Gemzar or Caelyx but with a 3 month rest before continuing. We do not know what to use since everyone experience with each is different.
Does anyone know/had such an experience before?
I apologise for the long post, but it is so frustrating to go through this again and i cant start wondering how my mother feels!! she is determined and motivated to push through all of this..
Wishing you all and my mum the best !!!
Hi,. First as you know we do all react to chemo differently, so this is my experience only Caelyx has given me good results. my history is as son as I stop chemo my 125 goes up.
In the last 3 1/2 years I have had 5 different treatments, Caelyx was 3 line as a single chemo for 6 month one each 4 weeks the side effect were hard but with the help of my team manageable, good also it was only one every 4 weeks.
Had Carbo /Caelyx together as 5th line and found this combo a lot easier then single Caelyx.
I had 8 month with good results and was about to go on maintenance Caelyx, but my oncologist wanted me to trial a new drug, it was not chemo the idea if work made cancer more sensitive to chemo I did 7 weeks found this the hardest drug of all. I'm now about to go back on Carbo/Caelyx as soon as I can get booked in my 125 is now 240.
I think a good break if your oncologist is suggesting is a good idea for your mum , as for which chemo Gemzar or Caelyx I have not had any experience with with Gemzar, maybe you could post and ask for advice on both chemo's.
I hope I have help in some way please feel free to message me or post when ever you like take care of your mum 💙💙and yourself Lorraine xx
Caelyx proposed.
3rd treatment of caelyx
Caelyx and hair loss 
Caelyx 
