Allergic to paclitaxel, please advise

Hi Rosi18 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

My story is very similar to yours but I’m a bit ahead of you! My oncologist withdrew me from taxel and I have been in monotherapy (carbo only) ever since. Tomorrow is my last of six cycles. I was not offered a different drug to replace the paclitaxel.  It was described to me that carbo gives 80% of the benefit and I have since seen someone else on this forum or another say they were told the same. My CA125 has been steady and low throughout the chemo. I will have a scan in December to check where we are up to (but I had an emergency scan in cycle three when they thought I had a bowel obstruction which was clear apart from very heavy colonic loading!!)  Hope that helps but just ask if you have any other questions. Best of luck to you. 

MsFizz, thank you so much for your reply. Please keep me updated about your scan, all fingers crossed for you. 

I had Covid a fortnight ago and unfortunately still not strong enough to take chemo today. Been put back by a week (possibly more). Told to rest! Hope all ok with you Rosi x

Hi Rosi

My Mum (84, inoperable stage 3C HGSOC) also had an allergic reaction to Paclitaxel, it was really scary at the time as I am sure it was for you too. 

As MsFizz also mentioned, the Carbo is the heavy hitter, the paclitaxel the smaller top up agent. 

Mum actually started her treatment ONLY with Carboplatin as a single agent and tolerated it really well, tiredness, no nausea and no hair loss. Unfortunately she was platinum refractive and after 6 cycles her CA125 hadn't reduced to a more normal level. She started paclitaxel and reacted badly so was moved to nab-paclitaxel (Abraxane) and managed 15 cycles, CA125 now stable at 23 for the last 6 months.

There are a plethora of options available and lots and lots of hope! :-)

Hope today is a good day for you. x

I wish you a speedy recovery from Covid! Hopefully you’ll feel better soon. Keep us posted. 

Thank you for the reply Francesca. Hope you mother keep doing well with the treatment and is cancer free in the end. 
My doctor decided on Abraxane and Carboplatine and I just had a cycle of them two today. And I shall see.
Out of interest are they testing your mother’s CA125 after each treatment? Asking as I haven’t been tested after I started chemo.

Thank you. 

Hi Rosi Great news that your treatment has started in earnest now with the combination of the 2. It’s quite the journey. I know it sounds odd, but keep a record of how you feel each day of cycle 1….whether it be about what you eat, if you feel fatigued, if you go to the loo ( keep an eye on that the drugs can make you “slow”) temperature if you have a thermometer and also BP…….you will find that each cycle follows a very similar pattern and it is reassuring when you are on cycle 2 etc to know that Yes this happened cycle 1, it is really hard to remember especially with chemo fog! My Mum really took ownership of her treatment and it gave her a positive focus during it all.

CA125 was done during routine pre-chemo bloods each time along with kidney/liver function, FBC, inflammation markers etc. They may not have done CA125 this time as your first cycle was interrupted with the reaction but I would expect it and indeed ask for it during pre chemo bloods before your next treatment. Do you know what your marker was to start with? X

Hi Francesca, thank you for all the above, it is really very useful and I will definitely start recording my journey.

If you don’t mind me asking as I’m still trying to figure it all out, did your mum have her surgery prior the chemo? And what is platinum refractive please? Has her CA125 stayed stable during the treatment with the cargoplatin and then went up higher after, or has it never changed during the whole course of the cargoplatin? Glad Abraxane worked for her.

Sorry for asking but my cancer is same (with the exception that according to my surgeon it was 3b and my chemotherapist grades it as 3b) Before my surgery my CA125 was 156, but I never saw the results of it after the full hysterectomy. My first chemo was done on the next day of the allergic reaction and was only with carboplatin and unlike most of the other patients I spoke to, I didn’t feel any fatigue but was just unable to sleep at all, days or nights for 3 days after the treatment. Yesterday, they included the Abraxane on the second cycle and I will have 5 more of those. Thanks to you I asked for my blood results and can see CA125 went down since the diagnosis, but again not sure it is not because of the surgery. Sorry for the thorough information, surely you don’t need all this, but losing point now from time to time :). All the very best again to your mum and you (and if you haven’t yet, test yourself for BRCA1 and 2. 

Morning Rosi,

So, Mum is 84 and because of advanced age she was not considered strong enough to tolerate and recover from the debulking surgery that you have had. It was definitely the right decision under her circumstances, so her treatment is considered palliative rather than yours which is focussed on being curative.

Mums CA125 was over 800 at diagnosis and is now a stable 23 which is a normal level for any woman.

Your CA125 will be lower after primary cytoreductive (debulk) surgery. It measures the amount of "Cancer Antigen 125" protein in the blood and this reduction correlates with the fact so much of your tumour/s have been removed which is great news! Now the cytotoxic treatment can get to work on what is left! Mad to say, but welcome it in and let it do its thing!

Ah, the sleeplessness you can thank the steroids for that! (dexamethasone?) An unwelcome side effect unfortunately....but again, make a literal note of this and you will get to recognise this as part of each cycle. We chose and watched different box sets on Netflix to pass the looong night hours.....recommendations if you need any!

Don't be afraid to be vocal with the clinical and nursing team, ask any question that you want to, they have a wealth of knowledge to impart. also don't be afraid to reach out/or be referred to your local Macmillan team.....they are there for people surviving disease (as much as those who are on a different journey). Until we met our Macmillan angel Carol we had no idea how totally amazing they are and how they help get you through the hard times....great person to have on your team!

Thank you for kindly saying about getting tested, we have done this.

I am acutely aware that I have not had OC but I have been with my Mum through literally everything, by her side all the time, advocating for her along the way and we both feel that if there is anything that through our experience we can help others with.....I will support always and champion others along their journey. 

Platinum refractive is when you don't respond to platinum based therapies (Carbo or Cisplatin).....then there would be other options... :-)

Hope today is a good day. x