Caelyx - Ovarian cancer

Hello , My mum had 2 cycles of caleyx ( which I thought were not enough) and then her oncologist scanned her. Mum on Paclitaxil now. Hope this helps.

Thank you

Hi

I was diagnosed with 3c ovarian cancer in September 2023 and had three sessions of chemo followed by debulking operation and another three sessions of chemo which finished in April 2024.  This was followed by regrowth of hair, recovery period including 3 monthly blood test for monitoring during which time I managed to live a pretty satisfactory life. Unfortunately, CA125 test shown a slight rise in markers in November 2024 and another greater rise in February 2025.  I am now awaiting my third treatment of a mix of carboplatin and Caelyx.  My markers were not nearly as high as when I was first diagnosed with cancer when I was returned for treatment but I was told not to expect an immediate lowering after this treatment.  I am due to have a scan after my third chemo session to see whether the results warrant having three further sessions of this mix.  That is as much as I know so far.  No result of how it is progressing has been forthcoming.  Do let me know if you find anything out as I am also a little in the dark at the moment

Hi Pauline

Seems to be the way things are.  Did ask my oncologist his thoughts and apart from saying everyone is different he was really not very encouraging re a positive result for me, but you never know, hope and courage go a long way.  I have had two sessions of Caelyx now and will be having a ct scan prior to the next one in just over three wks.  Before starting Caelyx I had two sessions of Carboplatin/Avastin, the first session reduced ca 125 numbers but the second didn’t so now I know Carboplatin is not effective anymore. I am currently getting 3 wkly infusions of Avastin and 4wkly infusions of Caelyx.  I have read recently that it might take 3 sessions to see any benefit and that while ca 125 numbers don’t show it the ct scan might be more positive.  That’s what I am banking on.
I am going after a second opinion now as it looks like I may have to see what trials are available and I have no idea where or how to start searching or even the cost involved.  I want to try and to have all the knowledge possible to hand so I can move quickly forward. 
One great thing to come out of this, hopefullly this will raise a smile, is that I suit really short hair.  I am about to lose it again for the third time but have two wigs on standby.  
Stay strong, stay positive.  When I get more information will let you know.  
I hope you are not experiencing too many of the side effects of Caelyx. 
Thank you for your reply, meant so much.

Hi Zander 71

It looks as though you and I are in very much the same stage of treatment at the moment so I get a kind of cold comfort from that - although it looks as though you are being more proactive than I am at the moment.  So thank you for replying.  As you say it means a lot to be able to share.  I lost all my hair after the second session with the first line chemo I had but so far this time it's stayed put but changed texture somewhat.  I already had short hair (as a concession to my age) anyway but also found the very short regrowth style quite flattering.  We have to make the most of any positives that come.  All the best with all your future decisions and treatments.  If anything of note comes to me will be in touch 

Hi Pauline45

Looks as if similar paths as you say.  Will keep you informed as soon as anything of note happens.  Wishing you well, enjoy the good days when they happen.  Kind regards 

Hi

Sorry I haven’t updated but apart from getting a second opinion and filling in forms in the event that I am accepted onto trials for Elahere nothing has moved forward.  I have a ct scan in a few wks time to  determine if Caelyx is working, if not then Paclitaxel wkly.

With regard to the Elahere trial, unfortunately I was turned down by the pharmaceutical company, reason not known at this time. Tumour sample was sent away and I do have the necessary high folate alpha positive receptor that would have allowed me on the trial.  There is another way of obtaining the drug that is licensed in Europe and USA but not by Nice in UK at the moment and that is on compassionate grounds or I guess paying an excessive price is also an option if I sell my house. Re compassionate grounds, my oncologist who gave me a second opinion re way ahead says she wants to wait on ct scan results and the completion of 6 rounds of Caelyx before proceeding. 
I believe that the drug Elahere will not cost anything at this time as it is not licensed in UK.  It will cost for all scans, blood works, treatments etc (I still have to get the data on these costs). It would also require moving nearer to an oncology unit that can administer the drug. 
In a way, a little movement.  
I will update you if you think this is helpful.  
Take care of yourself xxx

Zander71

Hi Zander

Looks as if you are in a bit of a state of limbo just now.  Hope something resolves for you soon.  Thank you for taking the trouble to pen a reply.  I haven't felt the need to proactively look into what is available but am just going along with what is being offered when it is.  I do find it really interesting to hear of other drugs and options which are available.

My regime now is to have 6 cycles of a mix of Caelyx and Carboplatin.  I had three cycles, followed by a scan and blood test and CA125 markers had improved by 100.  so have had my 4th treatment with two more to follow.  1 day a month followed by 4 weeks recovery period.  Each treatment seems to have deeper and longer periods of effect on my body which I find quite hard to arrange my life around but I normally get up to 2 weeks each month of feeling fairly 'normal'.  Still I can live with that if it is effective.  My Oncologist and I have discussed a possible maintenance drug called Rucaparib but obviously that would only be administered if results dictate it after my 6th treatment of chemo and scans and blood tests.  Not thinking any further ahead than that.  Partly because I'm so exhausted with this treatment and just making the best of what I can do.  My last treatment is in August so will know more after that no doubt.

Hope you're keeping your spirits up meanwhile.  It's quite hard sometimes.

Look after yourself

Regards

Pauline 45