Caelyx success rate.

Good morning ladies, I am apparently considered Platinum resistant and it has been suggested that I try caelyx on its own for my 1st recurrence. Has anyone had this as a single agent and did it do the trick? Many thanks for any info. xx

[busbee3]

I am platinum resistant also. My oncologist was optimistic that Caelyx would do the trick for me, however, after being on it for four months, a CT scan showed progression, so it didn't work for me. I was shocked and am now on single agent weekly taxol, which is showing some benefit. Let us know how you get on.

[Hidden in reply to busbee3]

So sorry to hear that Caelyx didn't work for you. I have heard that weekly taxol is very effective and easier to tolerate than carbo/taxol. Good Luck

[Birdsong222]

Hi Lynn

When did you finish chemo? I thought you were only considered platinum resistant if you had a recurrence less than 6 months after finishing chemo. Sorry not had Caelyx. I went 9 months and then told it had come back, this was not a shock as l had begun to feel unwell. Like so many others, I was more upset with this news than l had been first time round.

I was started immediately on Carbo and Gem Feb-June of this year. Which l tolerated very well. Have just been informed that l am not NED as l still have 3 small area's in the peritoneum, the largest presently is only 10mm. I am being offered Olaparib. Additionally l hope to be accepted on the ICON 9 trial and may then get Cediranib but the trial is randomised by computer. Nothing lost, as l will definitely get the Olaparib.

Wishing you all the best, l am sure you will get some sound advice from those who have had Caelyx.

Sylvia x

[Hidden in reply to Birdsong222]

I finished chemo November 18, my ca125 was 38 but my scans were NED, over the following months it rose to today's 550. Because my scans have always been clear I have been on watch and wait. My latest scan shows two small abnormalities in the liver and two small pleural effusions, however they are still unsure what is causing such a high CA125. It would appear I am somewhat of a mystery. Not good! Have a MRI next week and also had a echo as my heart is enlarged. Don't you just love this s**t disease!!

[Birdsong222 in reply to Hidden]

Good luck with your MRI. We are all very individual and the new way of thinking is to treat the individual, not lump us all into the same pond.

[busbee3 in reply to Birdsong222]

I don't know much about Cediranib, but heard it is an anti-angiogenic, similar to avastin. Have you had avastin already or had a discussion about it with your oncologist? I'm just wondering why you're interested in Cederanib specifically. I'm hoping to learn more about it as an alternative to avastin, but was told that all the anti-angiogenics work the same.

[Hidden in reply to busbee3]

Hi busbee3 - what is Cederanib? I did not have Avastin as I was concerned about the side effects, maybe not my best decision but it felt right at the time.

[busbee3 in reply to Hidden]

Cediranib is an anti-angiogenic drug, like avastin. It does the same thing, I believe, which is stops the creation of blood vessels. I was offered avastin before and turned it down because of my fear of bowel perforation. Now my oncologist has raised it again, so she seems to think I need it because of the progression. I just don't know what to do!

[Katmal-UK in reply to busbee3]

Hi, just wanted to but in as I have trialled both Avastin and Cediranib (not at the same time) and now trialling Olaparib. The Avastin gave me a much longer NED than Cediranib plus the Cediranib was taken orally. The main side effect with both Cediranib and Olaparib is loose /urgent bowel movements (less on Olaparib) . Ive currently been on Olaparib 5 years, 7 months. I hope you make the decision thats right for you xx Kathy xx

[Hidden in reply to Katmal-UK]

Hello Kathy I was initially a private patient and offered Olaparib if I was BRCA positive. I wasn't positive, and told the NHS would not pay for it, so we looked at alternatives, as my scans were clear I opted for watch and wait, which is much harder than I had anticipated, but I got some nice holidays and trips out whilst being treatment/symptom free, so cant complain.

[Hidden in reply to busbee3]

It is hard knowing what to do for the best. I refused Avastin and I will always wonder if I made the right decision. I think all we can do is to ask lots of questions at the Oncology meeting (something which I am terrible at doing) and hope that what you decide is best for you. Good Luck

[busbee3 in reply to Hidden]

Lynn1987, I want to refuse Avastin too. I declined it a few months ago, but I know something more is needed to combat progression. I wish there were more alternatives. Such a difficult decision...but maybe it doesn't matter in the end...I'm not sure.

[Hidden in reply to busbee3]

Hello Busbee - You must think long and hard about declining a particular treatment, talk with your oncologist about alternatives and see what they suggest. With hindsight I think I should have given it a try. Good luck with your decision.

[Birdsong222 in reply to Hidden]

Lyn and Busbee Other than the information the hospital gave me, l read the latest on the cancer research web site. It appears to help avoid bowel problems. Some ladies have mentioned consultants saying that Avastin is old hat and newer drugs are on the market. We all know that consultants have a mind of their own and my hospital has gone into trials big time. My own consultant takes it personally when one of her patients die. Very reassuring.

[busbee3 in reply to Birdsong222]

Can you tell me what the cancer research site is or where I can find it? I don't think I've seen this and it sounds very helpful. Thanks!

[Birdsong222 in reply to busbee3]

cancerresearchuk.org/about-...

[Birdsong222 in reply to busbee3]

My oncologist feels this is a better option for High Grade Serous Epithelial OC, non braca. She feels that Avastin is not the drug for me. I have met some ladies on Avastin and they have all been braca positive. Apparently there are also fewer side effects. The trial is to take both if chosen. Olaparib and Cediranib.

[busbee3 in reply to Birdsong222]

I didn't know that BRCA was related to Avastin treatment. I'll have to ask my oncologist about that, although I'm BRCA negative.

[Hidden]

Hi All. I just wanted to enter the Avastin debate. Please see my response to "Back to Chemo" an earlier post today. I've been on avastin a long time with v few side effects. I have only praise for it. I've never heard of it related to BRCA. I'm BRCA neg.

Best to all. Pauline.

[MrsRound]

I had Caelyx on its own starting last September 2018 and other than some skin issues(blistering) tolerated it very well. It reduced my ca125 and shrunk growths over a period of 6 months. I am platinum resistant, Brca negative(had avastin but it didn’t work) I finished the Caelyx treatment in February and have had a fun few months with no hospital commitments. Just had a blood test and ct scan and it’s on the move again annoyingly so waiting for suggestions as to the next step.

[Hidden in reply to MrsRound]

Thank you that is interesting, just wondering if you were offered a maintenance drug once the Caelyx course was finished?

[MrsRound in reply to Hidden]

Hi Lyn. No maintenance treatment was offered. They wanted me to have a break from treatment apparently. I’m not sure what maintenance is offered to brca negative, platinum resistant people, other than avastin which didn’t work for me.

I’m now being forwarded to the royal Marsden to see if there are any appropriate trials for me x

[Hidden in reply to MrsRound]

Hi Mrs Round - I am also BRCA negative and platinum resistant. I am in first recurrence and starting Caelyx next week, then they have talked about Niraparib for Maintenence. Good luck with your treatment. x

[tara108]

Hi Lyn. I know on a trial they were getting better results with cediranib and olaparib than olaparib only. But apparently the side effects were worse than olaparib only and some women dropped out of the trial. It's so difficult to make all these decisions! Hugs from Oz.

[Maggiemo19]

Hi lynn, I started on caelyx when I had a recurrence. I have it in the peritoneum. They said surgery was not an option and gave me the choice to have caelyx as they said it only had 15% chance of working and that it was given as palliative treatment. My last visit to oncologist stunned me and hubby beyond belief. They said I was NED and they would see me in 9 months. I had very little side effects with caelyx and even my hair, eyebrows and eyelashes all continued to grow while I had the 6 cycles.

Good luck with it lynn. Xxxx

[WizzyJ]

This is interesting. I have just started on Cylaex and Carboplatin following my second recurrence. I only had a few months of being 'clear'. My last chemotherapy was last July. Would love to hear some encouragement. My previous treatment was Carboplatin and Taxol. Stick with it girls xx