Paclitaxel not working

[Narna1]

hello everyone, I wondered if anybody had a similar experience and could offer some advice.

I started on weekly Paclitaxel in January (second line treatment recurrence) and after my last CT scan I was informed that the cancer is progressing. My CA125 started to go down at first but soon started going up again and is now 186. I am classed as platinum resistant.

My oncologist has stopped the treatment and I’m waiting to hear what options they have for me. I have had to have acities fluid drained recently from my upper abdomen but apart from that I’m managing relatively well to keep active.

Does anyone have any idea what happens next? I’m feeling rather fed up.

[delia2]

Hi. I’m so sorry it didn’t work. I think your best bet would be a trial and a second opinion from one of the top cancer hospitals. Xx

[Narna1 in reply to delia2]

Thanks for reply. My oncologist is referring me to the Royal Marsden (I’m currently at Addenbrookes) for possible trials. I have had a second opinion (Susie Banerjee - Royal Marsden) when I started on the Paclitaxel. The outcome of that was pretty much that I was currently under one of the best teams in the country. I’m sure they will get me onto something soon.

[Tulips66]

Sorry to hear the treatment has stopped working for you. Have you been on Gemcitabine & carboplatin together or is this option off the table too. If they don't come up with any other options & you are not ready to give up, keep pushing them to try something else especially when you are feeling so well at the moment , there has to be something to give you more time. Keep strong & 🤞Xx

[Narna1 in reply to Tulips66]

Thanks for your reply. I haven’t been on gemcitabine and carboplatin yet. I think this was one of the options that he mentioned. Although he also mentioned Pegylated liposomal doxorubicin (Caelyx). Do you know anything about either of these?

[Twinning in reply to Narna1]

I am currently on Caelyx. It is given every 4 weeks and I have had little side effects aside from knowing to keep out of the sun for long periods. It is slowly bringing my CA125 down(second recurrence). I hope it can be an option for you.

[Tulips66 in reply to Narna1]

Sorry Narna1 I cant help you with Caelyx. I was on Taxol, Carboplatin & Avastin for first chemo. When I recurred I was on the Gemcitabine with Carboplatin which kept me stable. I am now on a parp inhibitor called Niraparib which I started mid January but it hasnt been plain sailing. I have had low platelets then very low haemoglobin where I needed a blood transfusion. My oncologist has me on the lowest possible dose now so hopefully no more hiccups. Hopefully they will come up with a plan for you soon & it will work for you 🤞. Keep me updated & let me know how you are doing X

[Inguc_is]

my mom have palitaxel every 3 weeks before it was with carboplatin and it work all 3 times for recurrance but that she has reaction anfilactic shock from carboplatin and now

She has only palitaxel her ca was 420 before start chemo after 1 st chemo it was 370 ( with platin) after second when was shock from

Platin it went down to 266, now after 3rd chemo 230… little bit stressed as it went down not much, she get Ct scan yday waiting for results and on monday must be her 4th chemo

[Narna1 in reply to Inguc_is]

Thanks for reply. It sounds like the Paclitaxol is working for your mum. My CA125 went down 3 times but then started going up. I do hope it continues to work for your mum. Best wishes

[Inguc_is in reply to Narna1]

i hope so,,, now sh has 3 chemos, but she has 1 in 3 weeks

[Lucylockpocket]

I’m sorry that paclitaxel stopped working for you. I had weekly paclitaxel last year and when that stopped working Gemcitabine. Gemcitabine was pretty tolerable. Unfortunately, my cancer , like yours is platinum resistant and, although I am in the wrong postcode for treatment at the prestigious places like Addenbrooke’s and the Royal Marsden, the team keep swapping for me. On Gemcitabine my CA125 fluctuated around 500 but some bits grew so I am now trying daily cyclophosphamide which is another old chemo and currently my CA125 is over 1700(it was 4000 last year so I’m not panicking!). This is my 5th line chemotherapy. There are many options and , it’s easy to say, you just need to stay positive! So far this daily tablet is also tolerable. I scaled down my expectations of stamina and daily achievements and manage task by breaking them down so I don’t overdo things.

I hope you find an alternative that suits you. There are lots out there and people working really hard to help us conquer this!

Good luck 🍀Enjoy the summer!😎

[Narna1 in reply to Lucylockpocket]

hi Lucy, I was so cheered by your reply. I’ve read it out to my friends and family. Thank you for giving me more hope and for your very concrete advice about expectations. Good luck to you and have a great summer too. Allison xxx