Hi ladies,I've just been diagnosed with my second recurrence and have been told that I will have weekly paclitaxel this time, starting next week. I can't have any more surgery as the disease is manifesting as a thickening of my peritoneum, so chemo seems to be the only way forward. I asked how long I would be on the weekly chemo and my oncologist basically said indefinitely, or until it stops working or the side effects become too much, which scares the hell out of me!
Does anyone have experience of this form of chemo and have any wisdom to share please? My oncologist is the worst at giving information so I still feel quite in the dark about the whole process. Any advice/tips/reassurance gratefully received!! 🙏
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Kjpip
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Hi Kjpip - After my first round of chemo I was switched to weekly sessions, and I found it much easier to tolerate. I had worried that I would just feel dreadful the whole time (as opposed to the 3 weekly regime where you get a good week before it all starts again) but this didn't happen at all.I had lost my hair, after the first session which was obviously a bigger dose. I then had a break before and after my debulking surgery, and the hair that had started to come through didn't fall out with the weekly sessions, so that might be an added bonus for you.
Thank you! I had 3 weekly carbo-taxol as my first treatment 3 years ago and was hoping that the weekly sessions this time wouldn't be as harsh so that sounds promising 🤞
On my third reoccurrence I had 18 weeks of paclataxel because carboplatin had stopped working. In fact I’m remembering I had 3 months of carboplatin immediately prior to starting the paclataxel.
I was told it would be 18 weekly doses and the good news was that it was very successful at removing a large lesion below my liver , which was worrying the oncologist.
However , Iam starting another 18 weeks of paclataxel after Christmas as my CA125 is on the rise and my scan shows the disease on my spleen and lymph nodes. It’s a very persistent disease !
I would press your oncologist for a designated length of treatment as I think psychologically it’s important . At least for me it would be .
I’m also remembering that as the 18 weeks progressed the dose had to be lowered as my blood results were showing my white blood cell count was dropping. I finished the 18 weeks with one missed appointment and have had 2 good years since.
If your oncologist is not specific enough for you , try writing a letter to them with your list of questions on it .
You can do this ! I’m not looking forward to it but I’m going to keep thinking of spring and the summer ahead.
Thanks Mcsquaggle, I think you're right that mentally it would be good to have an end goal. I play in an orchestra and its a big disappointment that I won't be able to play on the weekly treatment as my immune system will always be rubbish! Knowing when I might be able to go back would give me something to look forward to. I'm hoping that with an 'indefinite' treatment plan, I can have the odd week off here and there to fit in weekends away etc though.It's good to hear you had a good 2 years since your last treatment, but sorry you'll be going through it again after Christmas - we'll have to root for each other!
I'm not sure myself about length of treatment dates. I've been advised its initially for 6 months, then ongoing for as long as I can tolerate it and it's working. Surely it's best to go with that until one of other of the above arises? I personally wouldn't want an end date, I'd try and work my passion around what keeps me alive for longest,even if it takes a different form. Or just see how it goes and take it week by week until you really feel you want to know otherwise. Thinking of you being in the same boat xxx
Just came across your post. Are you sure playing in the orchestra is ruled out, being on (even weekly) chemo shouldn't stop you getting out & about and mixing with other people surely. . .? Might be worth checking with your oncology team??
I'm just cautious about germs when I'm on chemo, and so far it has paid off as the previous 2 lots of treatments have gone smoothly and I've not been too poorly. Unfortunately I play a wind instrument so I would be surrounded by people blowing and spitting! Probably not a good idea, especially over the winter! Perhaps I'll relax about the germs as time goes on...
I did 18 weeks of weekly taxol and to me it was very doable..the only side affect I had was tiredness now and again and I had days in bed. Just don't fight it The one sound advice that I would give is ICE FEET AND HANDS!!
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I was at used on many Facebook groups to do this especially by patients fron the US
I did this religiously every week and can honestly say that I had zero Neuropathy. Ice feet and hands, start 15 minutes before treatment, during the treatment (usually an hour) and leave on 25 minute's after treatment finished.
You can buy suzzi ice packs from Amazon. Any questions please do not hesitate to contact me. Wishing you all the best
Hi KJ I have been on this regime since July with a month off in September as we had holidays booked. Like you, I will continue till pacitaxel doesn't work or I cannot take the side effects. Do remember, though, that you can take time out any time you want. It's your life. Also, the week I have no chemo we go away for the weekend. At first I had no real side effects but I think it's cumulative so I get very tired, nauseous and have neuropathy in my feet. Hope that doesn't sound too depressing. I'm still living a good life. All the best xx
I’m also on weekly Pacletaxel, “for as long as it works ..etc”. It’s the only chemo drug left to me and I’m only on 60% of the full dose because of neuropathy in my toes. It’s definitely helping and I’m on my 5th week and no hair loss so far 😁
I hope your neuropathy doesn’t interfere with your music but you too can have the dose reduced if necessary. You can also take time out for holidays as I do. Personally I only worry about a compromised immune system if my white cell count is very low, otherwise I live a near normal life (apart from the fatigue).
Ask your oncologist to set a date for you to finish if it helps. I don’t know if you do this but if not try to take control. Don’t be put off, have a list of questions and let him/her know it! Tell him/her to stop while you go through your list. It is important to take control of the conversation, it may be hard but once you’ve tried it I think you’ll be glad you did.
I was diagnosed in 2016 and had the surgery but have been classified ‘palliative only’ from then. I’m now on my 6th course of chemo and mostly stable but it’s gradually worsening with each year that passes. I’m just glad I can still enjoy life.
Here’s hoping you can enjoy your life and can get back to your music soon.
Thank you Iris. It's not so much that I don't try to take control and more that my oncologist just cannot communicate! It's like getting blood from a stone honestly, so I just go away and ring my CNS who will explain everything properly! (For example, he didn't even explain that you have 3 weeks on and 1 week off...) I'm glad you're living a good life despite the paclitaxel, thank you for the hope and the hugs xx
Oh KJ, perhaps you should try to change oncologist. I have refused to have a consultation with an oncologist who was too arrogant to discuss things properly. I don’t know how easy it would be for you to do that but you shouldn’t have to rely on your CNS.
You sound like you’re in the UK like me, so PALS may be a way to go, Patient Advice and Liaison Service might be worth a try. I went to them when I got a letter from my oncologist that didn’t cover what we’d discussed in the consultation and I couldn’t get through to my oncologist to change it. They had it sorted within 2 weeks and I had a corrected letter - and we now have a better relationship too.
KJ, I am with you and many others in every respect here. Firstly, I can only rely on my CNS, my oncologist and another I've met (both London linked hospitals UK) have been arrogant, untruthful and don't report what they say/do. I got all my medical records recently and the negligence shown has been awful. I can send in a complaint to PALS but I have little energy to do so, I need to focus on what I CAN do going forward but this really needs bringing to someone's attention so I feel bad for others if I don't so something. I'm trying to get transferred but it's not that easy, another stress factor. On another note, I am wondering about Paclitaxel alone. I starred weekly treatment today, 3 weeks with a week off. It's,2nd line for me which I think means less success rate. Maybe Ovacome can clarify this. That's because I'm platinum resistant after 1st line treatment with only 3 weeks NED. I've had 2 sessions of Caelyx but my cancer spread considerably in those 2 months. I'd love for my tumours to not only stop spreading but for shrinkage aswell! 🙏 xx
Hi Kazzh, the extra stress is just not what we need is it?! I also have very little energy to complain at the moment, but maybe when I'm feeling a bit more like myself.I've found out from my CNS that I'm having literally weekly paclitaxel, no week off, which is pretty daunting, although she did say that I shouldn't compare it to the first treatment I had as it's a much milder dose and I should be able to get out and about more, rather than having a week of terrible immunity like you do with the once-every-21-days treatment.
Sorry to hear the caelyx didn't work for you, let's hope that weekly paclitaxel is the one that works for both of us! Xx
Gosh I hope so. I'm looking into alternatives treatments to go alongside this, I've done alot of research, nothing comes cheap so my brother is helping me set up my gofundme page. I've got to try! Clear cell ovarian cancer is very hard to treat too.
Have you expressed your worries around having no time off in between? Psychologically I'd find that tough. We all need a break! Find out the reasons and choose, after weighing up the options. It's up to you what you do.
Think about what's best for your mental and physical well being and work around that.
I'm with you on the germs, I've stayed well so far but my team have said I need to stay doubly well this round due to many lung mets and my breathlessness.
Wishing you and me all the best 🤗🙏 do message privately if you wish x
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Second line standard of care treatment - weekly Paclitaxel - any experiences?
Weekly taxol
Paclitaxel
Weekly taxol 
