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!
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...
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.
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