On a break from caelyx,125 going up need advice.

[lorraine71-Australia]

Hi Ladies,

I finished 6 month of caelyx it did bring my 123 down from 275 to 65, I had some of the bad side effects but managed. My oncologist suggested I have a break , it will be 3 months when I go back on the 6 of March, my 125 is now 95.

As this was my 3rd line chemo in the 3 years I've been on this journey, I have been on treatment most of the time, at the moment I'm feeling so low,when I go back it could be more caelyx or single weekly taxol. I would like to ask if any one has had a break from 6 treatments of caelyx then went back onto it, and how many more treatments did you have.

I did search to try and find out how many caelyx treatments can be given safely, I am interested to know if it can be given over a longer time, I think I would like to try it again as it did bring it down , plus the benefit is it's only every 4 weeks, I know it's hard on the body.

Every morning I open this site to read the amazing positive post and wish I could be as brave as some of you wonderful ladies,but I'm not. This is where I come when I'm down or need advice thank you all.

Lorraine xx

[Lily-Anne]

Is your target to see a lower CA125 or a reduction on your scan? it's easy to get caught up on the numbers. Why not ask your oncologist to list your options what each one will provide and the trade off

LA xx

[lorraine71-Australia in reply to Lily-Anne]

Hi Lily Anne

Thank you for reply,

Yes I will discuss options with my oncologist when I go back,I think to lower my CA125 to a normal number would be great I've never been normal or had a clear scan. My oncologist keeps a eye on both.

The reason I asked advice was I was hoping some lovely lady could give me advice on how many caelyx can be giving safely, I would like to discuss this when I go back.

Taxol This is my 4th line and I've been told not too many options.

Cheers Lorraine xx

[Hidden]

I got the impression from the US Inspire site (do you use it?) that some women have had repeated rounds of Caelyx.

All of these treatments have a bit of a cost/benefit analysis to be done, don't they... there aren't any that aren't hard on the body in one way or another. I think we're just more aware of some impacts than others.

I'm on 4th line Carbocaelyx too and my oncologist seems to think there are plenty more options. I suspect she's exaggerating, but reassuring nevertheless.

You've had good suggestions already. How about asking about clinical trials or researching them yourself and going along armed with the info?

I don't think any of us are brave. We're all just making the best of a very bad job, at least some of the time. But then, isn't that what living's about, cancer or not.

Am I right you're in Australia? I've discovered the best way of coping with steroid sleeplessness this time around: long Skype conversations with a very dear friend in Sydney - for once our body clocks coincide! Every cloud does have a silver lining and it beats clearing out cupboards.

All the best. x

[lorraine71-Australia in reply to Hidden]

Hi Mac 27,

No I've not been on Inspire but I will thank you.

I have been researching clinical trials here in Australia. I'm not suitable for most till I have no more options.

I keep a eye on any new treatment that I read on this site, some a are not available here, one that did sound very promising was Oiaparib and it has just been approved to go on the medical list. When I looked into it, it's for BRAC2 positive I'm not but great for ladies who are, I then had a reply back from a lady on this site who is in a trial for Oiaparib to see if it would help if you are not Brac2 Positive.

I think I will go back on Caelyx for awhile I did managed the side effects and and it will give me time before I need to go on taxol.

As for steroid sleeplessness my granddaughter 16 years has written a children's book and I'm doing the illustrating, a nice why to past the time and a labor of love.

I do wish you all the beat with your treatment.

Cheers Lorraine xx

[Lily-Anne]

ema.europa.eu/docs/en_GB/do...

You may find this EU document a useful read on the dosage

LA

[lorraine71-Australia in reply to Lily-Anne]

Hi Lily-Anne,

Thank you for the information.

Lorraine

[lorraine71-Australia in reply to Lily-Anne]

Thank you Lily -Ann I did print out the document and will take it when I go back to the clinic.

Cheers Lorraine xx

[Hidden]

Hi Lorraine

I know someone who was on caelyx for a long time. Her CA125 wasn't down to normal levels after the 6 months, so the caelyx continued. I hadn't thought that was possible but clearly it must be. Can't tell you exactly how long but I'm certain it was more than a year. I'm not certain if the dose was reduced.

BTW I'm in Perth. Do I remember right that you're in the Blue Mountains?

Best wishes. Pauline

[lorraine71-Australia in reply to Hidden]

Hi Pauline,

It's nice to hear from you hope all is well with you, Yes I'm in the mountains.

As I said my 125 did not go to normal. I had break 3month no chemo and it now going up again.Back on Monday to the clinic and Taxol seems to be the next one,have you been on taxol?.

The advice I found on the site is it's possible to have more then 6 so I will ask if I can have more,as it did go down on caelyx and it keeps taxol in the future.

How did you manage this hot weather, one day over 40 the next under 30.

last night I pull out my Donna,winter can not come sooner for me.

Best wishes to you also,

Lorraine xx

[steffi123]

I too have been feeling really low but have had only one dose so far. The hospital messed up my appointments and I was due for a does tomorrow but it has been delayed to Good Friday . I was so down to day they have referred me to Macmillan and upped my meds to two doses of morphine per day to deal with the pain. I have ovarian cancer but actually the pain is not down below but around my middle where I guess my peritoneum is located so it is mainly there. If I could get control of the pain I would feel better so lets see what this morphine does.

I have no appetite and feel sick most of the time . Domperidone settles that (sometimes) . Haven't actually vomited yet and I will have a scan at the end of the month so will see what is happening. I am dreading it.

[lorraine71-Australia in reply to steffi123]

HI Steffi, You are on Caelyx? Sorry you are having so much pain it's bad fighting this beast with out having to put up with pain, I hope the morphine helps and you get good news about the scan. Keep up the good fight Lorraine xxx