Carboplatin & Caelyx - prospects, prognosis, etc

You have indeed been through a lot and your story is yet another illustration of how tough having ovarian cancer can be. As long as you are at least partially responsive to carboplatin, I suspect they will stick with it. It sometimes  feels like a bit of a lottery though doesn't it?, both in terms of what side effects you get and how intense they are, and also in terms of the "response" we get. In my experience, the oncs work off symptoms, bloods and scans. I have had moments when the scans were clear (in the sense that nothing was showing) but bloods and symptoms were suggesting otherwise. At other points, I felt great but there was clear progression on the scans. It makes no sense sometimes. I am now fully  platinum resistant and currently on weekly taxol, just had 12 of 18. I've had most treatments going and find this one quite tolerable, though the peripheral neuropathy is getting worse. Quality of life is still pretty good, all things considered.

Hi Bella Bee - sorry to be so late replying; for some reason your reply to my post went to my Spam folder and I don't check it that regularly. Your answer is very helpful; thank you! I'm worried about side effects as I seem to suffer quite badly with carbo, caelyx and previously with Paclitaxel (Taxol). Also, unfortunately for me, I live 45 miles away from the hospital that is treating me, so if I have to go in weekly, that's an extra bit of stress, more lost time, travelling, parking, waiting for the pharmacy which is always late dispensing the drugs, etc. Is the taxol delivered IV? Good luck with your treatment and I'm sorry to hear your peripheral neuropathy is worsening. Isn't there anything they can do about that?

Hi Bella Bee; me again. I've just Googled "how is Paclitaxel administered?" and I see that it is IV, so no "easy getaway" there. I guess that means I'm not going anywhere for some considerable time.

Yeah weekly chemo is hard going for purely practical reasons. I live 18 miles from my hospital which is bad enough! I go in Saturday morning for bloods and Monday for treatment. Some hospitals let you have your bloods done closer to home though that doesn't  work for me sadly. It's a simpler protocol though. No special take home meds( metoclopramide +  Difflam which can be dispensed on the ward) so no pharmacy waits (unless you need something extra, and agreed that can add time on). It's done by IV, the whole thing takes about two and a half hours Including pre meds, flushes etc. The actual taxol infusion is one hour. The PN isnt pleasant but it's intermittent at least. Wearing gloves seems to help! There's not a lot that can be done apart from dose reduction or treatment delays. Overall though it does make me feel like a full time cancer patient as you're never really away from the hospital for long.

Thanks Bella Bee. I guess if I start on weekly Taxol, I'll have to hope they are happy to continue with a Tuesday treatment day as that means I can have my bloods done locally, just 6 miles away, instead of 45! Were you on Carboplatin and Paclitaxel at first, though? I'm guessing you would've been. My problem is that I had a severe allergic reaction to my second cycle during first line treatment in March 2023 so I have to have pre-meds and extra Dexamethasone, Cetirizine Hydrochloride, etc. All very boring from a waiting for the Pharmacy to do its job point of view as they're always late. What do they give you the Difflam for? I'm glad to hear the PN is intermittent, though in some ways that makes it difficult to plan if it just comes out of the blue at you sometimes. It's a shame the blood test side can't be worked out for you closer to home. It all adds to the stress to have to travel. You sound like you're in the UK, so would it be possible for them to defer your treatment day by 24 hours and enable you somehow to have your bloods done locally? I thank god at least that's one round trip of 90 miles I don't have to make! And yes, I know what you mean by being a full time cancer patient. It's all-consuming, isn't it?

Had carbo/taxol twice early in my journey, though switched to taxol/ cisplatin after allergic reaction to carbo. Subsequent encounters with carbo always done on the densitisation protocol (4 bags 90 mins each). Bloods nearer home no good for me as while alternative hospital is us nearer, the traffic is awful. Yes, in the UK. Were you deemed allergic to taxol? Carboplatin is the usual suspect. I don't even have steroids on weekly taxol (apart from the first two weeks). Difflam is for mouth ulcers, wonderful stuff!

I had to double check my notes as I used to remember every single detail of my treatments, but find it more difficult now that SO much water has gone under the bridge! It was definitely the Paclitaxel, though. On that second cycle, they opted to give me more Carboplatin instead and didn't restart Taxol until cycle 3 when I was fully pre-medded up and the desensitisation protocol had been drawn up so the Taxol was delivered painfully slowly, yawn! I guess we're lucky in one respect: we live in the middle of nowhere and though the hospital (Hereford) is 45 miles away, it's usually a pretty trouble-free journey. We normally manage it in about 1h10m. Parking at that end is quite another matter, though! I guess I was deemed allergic to taxol, but not so much it couldn't be overcome. Good to hear you don't even have to have steroids on weekly taxol. When the Bevacizumab/Avastin was giving me mouth ulcers, they gave me something called Gelclair. That worked very well, but it got less and less of a problem with time anyway. How are your CA-125's? Mine only ever reached a low of 58 on 8 September after 8 cycles of Carbo/Taxol and interval debulking surgery plus a bowel resection on 28 June. Ever since 8 Sep, whilst I was on Bevacizumab alone, they just kept (at first) creeping up and up and then in the last 2 - 3 months, going up in great leaps and bounds of 500 at a time - in the space of either 3 or 4 weeks. The suspicions are: 1) it's now metastased into my peritoneum and 2) the tumours are too small to be picked up on a CT scan. I have my third cycle of Carbo & Caelyx next Tuesday (yesterday's had to be shelved as a I had a tooth out on Monday... just my luck!) after which it's CT scan and discussion with the onco. You sound quite upbeat, I hope it reflects real hope in your situation. x

Ah right, so you have managed to stay on the right side of carboplatin but not the taxol. I wonder how being allergic would affect the weekly protocol, whether you would still have it infused slowly. It's good indeed that you can still get the drug as some people have such a strong allergic reaction they can't have it again.  My CA125 has never gone massively high and treatment has so far brought it back into the normal range. I think as long as the mechanism works, there is something to judge the effects of treatment, and to point to possible relapse. I had a spell when it didn't work (when I was on olaparib) which left me in the dark. It is unnerving when it's rising and the scans are clear, and when we're asymptomatic. It's a case of watch and wait. I think in those instances, the gut feelings of our doctors are as good as anything. I do try to own my disease, to accept it for what it is, and do what I can to be as well as I can be but it is tough-going, physically and emotionally, especially during treatment.      Anyway, hope your latest treatment went without hitch and that you're feeling OK.

Yes, well my onco seems to think that if everything points to peritoneal cancer after a CT scan that still shows nothing (due for 30 April) and CA-125's that are still also rising very fast, it'll be either weekly Taxol or some trial or other. It's all going to hinge on this upcoming scan. She definitely thinks I'm at least partially platinum resistant, but she managed to have me on Carbo/Taxol for 8 cycles between Feb 2023 and Aug 2023 without me having another allergic reaction. It was in no. 2 that they had a couple of doctors from ICU plus about six nurses surrounding me and switching on the "emergency button", LOL! Unfortunately, unlike you, my CA-125's have NEVER (since diagnosis in Jan 2023) actually reached the normal range at all.  The best we got was 58 on 8 Sep 2023; they're now up to 2000. Eeek! Not good. My latest treatment didn't happen because I had to have a tooth out on Monday. It was due for Tuesday, but then got deferred to next Tuesday as (understandably) they didn't want to give me a cycle the day after a tooth extraction. On the Tuesday, I got an unsolicited phone call from the CNS asking why I'd "cancelled" my chemo treatment! I told her I hadn't "cancelled" it, but that another CNS had, the day before, said "call me as soon as you see the dentist and know whether or not the tooth's going to come out, so that we can defer your treatment for a week". So that's exactly what I did. Apparently the deferment hadn't been communicated to the onco who then just saw that I wasn't having chemo that Tuesday and must've more or less panicked and wondered why I wasn't there! Clearly no-one had properly communicated just exactly what was going on! I've found that the admin side of the NHS is absolutely abysmal! If I didn't stay on top of it all, goodness knows what mistakes would've been made with what drugs to dispense, when, how much, etc. And that's just one tiny side of it. Unfortunately I'm not entirely unsymptomatic, but I'm mostly not too bad, admittedly. So treatment next Tuesday now and I expect, therefore, to be ill from Friday onwards for 3 or 4 days. In bed with huge drops in BP if I attempt to get up and all the rest. It's a pig. I wonder why you were on olaparib. I've heard of it, but don't know enough (obviously). As they endlessly say: "everyone's different".

Oh blimey what a tale! I know exactly what you mean about NHS admin. While it's been mostly okay in my experience, there have been some big and small slips across the years and so I always double check everything and assume nothing. I really struggle with being thought of as a "pest" but override this with a firm belief that we have to advocate for ourselves. Sorry to hear you will have a horrible slump after your next treatment, it can be very grim. I think your scan is coming up soon, so I hope that gives you some clear answers as to how things will proceed. I think once we work through the standard treatments, other drugs become possible. I got olaparib as part of a clinical trial before it became available on the NHS.