Feeling fed up

[Casamimosa]

Hi, just been told I'm to start chemo again in coupleoif weeks so gutted and fed up. Caelyx this time as carbo taxol didnt last 6 months. How was it?

I've always had carboplatin/ packlitaxol up till now Coming up to 4years since I joined the OC club. Had chemo / radical op/ chemo/ olaparib/ more chemo now starting again with diff chemo. Last time and this due to lymph nodes misbehaving . I don't even feel Ill! Got few niggley aches. I feel strong to do this but I've got all the T shirts and just want a break. Was hoping last chemo would give me longer than few months before I had to face this again. Found another pair if Big pants and keeping positive. Just be good to know others experiences of Caelyx drug thanks for reading this xx

[Lyndy]

I sympathise Casamimosa, i am having chemo 5 cycle 3 on Monday. The thought that I will just recur again and have to start more chemo just fills me with despair atm.

I am on carboplatin and Caelyx. No huge effects but v fatigued and lots of irritating issues like cough and thrush etc.

You could get a second opinion on when to start your next chemo, if you have no symptoms perhaps you could watch and wait for a bit?

I am hoping to find a maintenance trial once I finish with the aim of staving off the next line of chemo as long as possible xx

[Irisisme]

Hello Casamimosa,

My sympathies are with you. It’s such a pain to have to go through chemo again. I’m now on 5th course since 2016. You have your chemo days and bloods, and scans etc and days when you can’t manage to do anything. It seems such a waste of time, but if it works you will be able to get on with life again. I’ll hope for that!

I had Caelyx last year and got really bad mouth ulcers - and it didn’t work. At the end the CT scan showed extensive liver metastasis. I couldn’t get onto a trial (I hope Lyndy does). I got other opinions where I could but was left with weekly Paclitaxel - again - and paying for Avastin every 3 weeks. I’ve only had one dose of Avastin because of bleeding but the Paclitaxel has sent my CA125 plummeting so I’m expecting my CT scan to show reductions.

All I can do is send virtual hugs and hope for success for you.

Iris 🤗🤗

[Casamimosa in reply to Irisisme]

Thank you. Virtual hugs back to you.

[Towergirl in reply to Irisisme]

Morning Irisisme,

Sorry to read that Caelyx hasn’t worked for you and that you are paying for Avastin. Olaparib didn’t work for me I’m now on Caelyx hoping that it works.

I am looking at paying for Avastin later, wasn’t available for me with initial treatment! Not allowed on recurrence!

Hoping you don’t mind me asking. Are you paying NHS for private treatment or completely privately? In line found NHS at £1,700 per cycle would this be the correct price with IV? Some online prices of over £40,000 pa which are whey out of my reach.

I have asked specialist nurse the costs but told I have to ask oncologist. As I’m not seeing him for a while would love to know if I can even consider Avastin.

Hope everything goes well for you and you get good results from CT scan. Best wishes

[Irisisme in reply to Towergirl]

Hi Towergirl,

I’m having weekly Paclitaxel so my oncologist arranged for the Avastin to be given with the Paclitaxel every 3rd week. They just hook them up one after the other at my NHS chemo unit, so I don’t pay for any private equipment or nursing just the bag of Avastin which the pharmacy prices up based on my weight. For me it’s about £500 per dose. I’m not sure what happens if I want to carry on with the Avastin after the course of Paclitaxel is finished (I’ve got 3 months to go).

All is well so far. I wish you luck,

Iris 🤗

[Towergirl in reply to Irisisme]

Hi Irisisme,

Thank you for this information, very good to know how it can work just need to get my oncologist on board. Seeing him towards end of month.

Good luck, hopefully you will get good results from both treatments. 😊

[Towergirl]

like you I’m on recurrence. Had Carbo Taxol this time last year by April had removed and mostly reduced tumour by spleen. now on Carbo Caelyx. Had 2 nd cycle on Monday, slight hair loss hoping that’s all. Fed up with being bald again! Tiredness due to sleeping not much more than 4 hrs. Don’t feel like eating much stomach and bowels a bit off. Similar to taxol for first week! Last two weeks I felt a lot better hope so again in a few days.

I am also fed up back on Chemo. Found out in November (CT scan) 6 months of Olaparib hadn’t worked for me!

So hard to take when feeling fit and well then told the cancers back. Definitely we all need to pull on our big girl pants and fight .

Have you had been offered Avastin? it wasn’t given when I was first diagnosed 6 years ago. I’ve just asked if I could get it after chemo and told no. Told I could if pay for it (with no price given though know it’s very dear).

My Oncologist said there were no trials at the moment so don’t know what he will plan!

Wishing you well for your Chemo and hope we both get great results from Caelyx. Hugs x

[Casamimosa in reply to Towergirl]

Thank you. I'm just having caelyx on its own so hoping hair loss won't be as bad as just getting hair back! Only finished carbotaxol in Aug. Yes need to battle on but as you say when you feel ok then they dump this on you its hard. Sending positive thought abd hugs hope you do well xx

[SopSinger]

Can't help with what to expect, but sending you hugs!

[Ruebacelle]

Hi dirst hang in there caelyx can be effective but watch out hands and feet can get neuropathy. Good luck from paris

[A1r1t]

Hi casa mimosa, I'm going for my 5th round of caelyx and carbo plating tomorrow, I've had patchy hair loss so I had it shaved off. I've had trouble with thrush every month which triggered my eczema down below but luckily I've got it under control now thanks to my GP. I got some cream from hospital unit where I have my chemo for dry flaky skin on my legs. Apart from that it is doable. Hope everything goes well for you xx.

[Leniko]

I haven’t had Caelyx, but I understand your frustration because I’ve been battling ovca since 2008. Just try to hang tough. Sometimes a mild anti-depressant is helpful. Good luck.

[Casamimosa]

Thanks for the encouragement and advice have come to terms wuth it now sort of At least there is something can be done. Thanjs fir the hugs too much needed xx

[Irisisme]

Yes, Casamimosa, that’s the upside - at least there are still options. Sometimes you have to search for them. I had a private phone consultation with another oncologist when my NHS oncologist was running out of options and that’s how I got the Avastin with my Paclitaxel. They are working for me so far but I did get the Paclitaxel dose reduced to 80% when side-effects got too much; it’s still working. I hope you can cope with Caelyx and it works for you 🤗