First post for a while - I stepped back for a while to concentrate on family, friends and me! I managed skiing, riding, dancing, modelling in the Touch of Teal fashion show, did lots of walking and had a holiday on the Camargue.
It’s not quite six months since I finished Caelyx/Carboplatin and my CA125 has increased 5-fold in 8 weeks - it’s now over 700. I started having strange abdominal discomforts about three weeks ago just as I was getting ready to go to France - some urgency and pain, wind and constipation and bloating. I went to France, but decided to contact my CNS to do bloods my early as I knew there was something not right. Anyway, I’m looking at 18 weekly doses of Taxol to enjoy over the summer and probably no hair again (which I don’t really mind).
My team are getting CT and ultrasound to see if I have ascites - my consultant thinks not - but I’m happy that they’re getting chemo on board quickly.
I’m wondering if anyone has any words of wisdom with reference to this regime - I had Taxol with Carboplatin for first line chemo - had a bit of an allergic reaction to it but was rechallenged and finished the course with the help of steroids.
Best wishes to all here, I hope everyone is as well as they can be.
Ali x
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Hi Ali I had 18 weekly taxol last year as part of the CEBOC trial. It was very tolerable in terms of side effects. I carried on working part time. After half way I did get more fatigue and some neuropathy but nothing as bad as carbo/taxol combination.
I used the cold cap and kept my hair apart form lashes and eyebrows lol x
Good luck with it and hope it does the trick in kicking the beasts ass xx
Hello Ali, sorry you are in this position but unfortunately i can say ‘snap’. I’m starting weekly taxol on Friday and not taking it as well as you. The thought of a wig all through the summer is depressing to me. Also my oncologist has said I will be having 8 weekly doses. Everyone on here seems to be on 18. I hope she knows what she’s doing.
You have had a super six months doing so much. Hopefully you will be able to continue all your activities whilst on the lower dose.
I’m sorry you’re in the same position as me. I wore my wig a lot last time I had Taxol, but it was in the autumn and I was surprised how cold my head was. This time I may just wear a sun hat, but will of course, stock up on the factor 50.
Keep in touch with how you’re getting on - it’s good to be able to share with someone in the same position.
I think I’m going to say no to the cold cap - I believe it adds quite a lot of time to the chemo. I just don’t feel I want to spend more time in the hospital than I have to - it takes about 15 minutes just to park the car!
Losing my eyebrows and lashes is far more traumatic to me - I’m hopeless drawing them on and I’m prone to blepharitis when my eyelashes grow back!!
Oh bother, Ali. Sorry the beast is back again. That said... what you manage inbetween treatments is unbelievable. Just about leaving out a Mt Everest climb . Good on you!
I saw Bev has already replied. It was her I thought of when reading your question about weekly Taxol.
Hope you sail through it, and the ca125 drops back down. Hugs, Maus
No Maus, I think Everest will have to come off my list of things to do (for the moment), but I may give Snowdon a try later in the year. I have been extremely lucky to be able to do what I do. I’m driven by the thought of having to stop doing the things I enjoy, but sometimes I overdo it and have to chill for a couple of days.
I’ve stopped believing that my CA125 will ever be near normal again, but who knows this time...
Hi Ali. Sorry to hear you are starting more chemo so soon. It’s relentless this b****y OC. Glad to know you went skiing as well as packing in an impressive list of activities. I don’t have any experience of weekly taxol but wanted to send you love and hugs and wish you all the best for the next few months. My monthly Caelyx is planned to take the rest of this year too, a bit daunting to say the least. With love Jo 🌺🌼🌸🌻🌹
I hope the Caelyx is good to you - I’m sorry that it didn’t give me longer as I found it quite tough. I’ve had a great six months and I’m ready for whatever is coming my way.
I must email the Swan group just to see how everyone is, although most folk are still active on the forum.
My very best wishes to you Jo, keep in touch. Good luck with the next few months.
When you have weekly Taxol, I believe the dose in each weekly infusion is a little less than when you have it every 3rd week, so I hope the risk of allergic reaction is less. I didn't lose all my hair on the regime, though it did thin a lot, but I was told it is more common to lose it all. I found it easier than Carboplatin. Wishing you well. Di
My team are going to give me steroids for the day before the infusion just in case and will keep a close eye on me.
I hope all is well with you, best wishes, Ali x
Hello Ali - I don't have any personal experience of weekly taxol, I just wanted to say how sorry I am that you are having to go through treatment again, but go through it you must! Many ladies on here have said that weekly Taxol on its own is no where as bad as when its combined. You may well sail through, and be able to keep up your busy schedule unhindered. Good Luck with your decision making. Lyn xx
Oh Ali, you have had a very busy life getting back into things. I cannot offer any advice regarding your new treatment plan but you are in good hands, have trust in them.
Mine returned a year after debulking and treatment with Carbo/taxol, so I guess we all come to it but the vast majority of us are still here fighting on and you seem a very positive person. I am sure due to the reaction you had whilst taking Carbo/Taxol they will watch you very carefully for any undue side effects. You can do this, you have done it before, and hey no hair during the summer, if it’s warm you will not mind whilst the rest of us go round with sweaty hair 🤣
This will be my third line chemo - I’m still thinking of this as a chronic disease! I’m happy bald - as long as I keep out of the blazing hot British sun !
So sorry to read you're back on the Chemo route again, Ali. What a blow. 😒 Still, you've certainly used your 'off time' very well with all the super things you've been doing! With your determination you'll hopefully be planning a whole load activities to do when Chemo finishes.
Sorry to hear the news that the beast has reared it’s ugly head again. Have no advice or words of wisdom, just sending you a big hug and positive thoughts.
I sympathise with you totally. The prospect of more chemo is so awful after such am enjoyable break. Making happy memories is a good strategy to have as you can daydream later on (like when the steroids are keeping you awake!)
I'm close behind you. I had a CT scan yesterday and will discuss my treatment plan on Wed. My only options are likely to be carboplatin or taxol, both of which I've had before and sailed through but I wasn't in an advanced stage then. There's always the option of doing nothing but I'm not that brave unless the oncologist suggests it. Fight on, we must and we will find the inner strength to do it too.
Yes Gina, the doing nothing option requires a great deal of courage - I’m not ready for that one yet.
A great deal of my strength comes from all the wonderful women (and occasional chap) on here who are all experiencing something unpleasant but are happy to send out positivity and give good advice.
I hope your treatment is kind to you. With love, Ali x
I’m glad to hear from you but not about the need further chemo . I haven’t had weekly Taxol yet but others seem to tolerate it better than other regimes . I’m really pleased to hear how active you have been in your treatment free period . Wishing you all the best . Im sure your strong spirit & determination will get you through this summer .
Hi Mary, thanks for your kind words. I’m lucky I can make so many memories to use as impetus to get me through the difficult times. I have to see my consultant again on Friday but I’ve booked train tickets to come to the members day on Saturday - will you be there this year? It would be great to catch up.
In the meantime, I hope you are well, love to you, Ali x
Hi Ali , I can’t make the Members day this year . Would have been good to see you & catch up . Perhaps there will be another Wellbeing day later in the year.
Am doing ok at the moment on Niraparib ; apart from v high Blood pressure so have got meds for that now . Am packing in the holidays & family time like you have done .
Its good you are sensitive to what is going on with your body to be tested when you were. When I was on the cycle of carbo/taxol, the weeks of just taxol were almost like no chemo at all--I went about my days without needing down time like I did with the combination week or both Carbo and Taxol I do also think they give you less when its weekly s hopefully you will not only tolerate it but will be able to carry on with all your adventures! You are amazing! Wishing you luck and sending hugs. oxoxxo Judy
Thank you Judy - it’s encouraging to hear your experience of Taxol. My body gave me no choice in noticing there was a problem - apart from the discomfort and constipation, my stomach is massive - a sure sign as I’ve always been lucky enough to have a flat stomach (except when pregnant of course)!
Hi Fay, I’m sorry you didn’t get to go skiing this year - neuropathy is a side effect I’m likely to get. Some folk recommend L-glutamine or one of the B vitamins - have you tried anything like these?
Even if you did not ski a lot at least you got your snow fix. Me and my skiing buddy have decided to go to our favourite resort - Madonna de Campiglio next year anyway. Even if I do not ski the resort and atmosphere are great. Now we have decided to do this I am going to really work on my legs and balance. Fingers crossed 🤞
Really hope your next regime poses no problems. I think of all the ladies that met up for lunch in Worcester and how they are doing.
Yes, I think of that day often. I’ll send an email at some time to see how everyone is and to moot the idea of a catch up.
We went to Madonna a few years ago - stayed at the top of the town opposite a ski lift. Best memory? Prosecco with limoncello on the terrace in the sunshine waiting for ‘Jean-Claude’ Russell to finish his daredevil stuff so we could have more food!!
More hugs and kisses to you both from another of the Worcester lunch gang.
It is miserable that you have to go back on chemo Ali but I suppose it has to be done and then you can get back to the much more important job of having a wonderful time doing all the stuff you enjoy.
I’m really sorry to hear you are back on the chemo train. However, I found weekly taxol really doable. The hair loss was a bugger - I could have had the cold cap, but when I started treatment I was in the midst of a bowel obstruction and the last thing I needed was head freeze as well! That being said, would you consider the cold cap?
Thank you Vicki - it’s good to hear positive experiences of weekly Taxol. I probably won’t use the cold cap, mainly due to the extra time it adds on to chemo day!
I agree with you about the cold cap! If you aren’t bothered anyway, why add more time to your day, especially if you have to be there weekly. It might be more worthwhile on a three-weekly cycle.
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Sorry the beast is back again. That said... what you manage inbetween treatments is unbelievable. Just about leaving out a Mt Everest climb 
. Good on you!
Here we go again
here we go again!!
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Here we go again!
