Decision - your views please

Caelyx isn't working for me and has been stopped after 4 infusions. The tumours have grown in several places and this has included one that is pressing on my ureter and blocking one kidney, so I had a stent put in yesterday after a few days in hospital with a drainage tube (nephrostomy). Now weekly taxol seems to be the last option and I will probably start that next week. They talked about giving me longer but I'm keen to get on with it and see whether it works and how bad the side effects are. But I also wonder whether that is the wrong decision and whether I should give myself a rest. It'll probably depend on how I feel when I see the consultant next week but I just wanted to ask for other opinions. I know it's my decision but hearing what some of you think will help. The other possibility, of course, is to call it a day and let nature take it's course. I've been on this journey 6 years and I wonder sometimes if that is long enough xx

23 Replies

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  • Hi

    I have discussed this regime too with my onc. and weekly taxol is having some really good results apparently, so think this is a good option and hopefully do some shrinkage and keep the beasts at bay. So many trials in the pipeline too. Keep the faith xx

  • Hi and a big virtual hug for you, I can't share any experiences or give any advice however my humble opinion is that you've asked for views as you still have hope. And while that hope is even a little little voice interested in what others have to say then please (as Leeds says above) keep the faith.

    I feel helpless that I can't do or say more but I send you my prayers and love .

    Take care

    Clare 👍🏻🌺💐❤️🌷👏🏻

  • Hi Lesley - I too can't offer any specific advice, but agree with Clare that it sounds like you had a voice inside you that perhaps doesn't really want to go down the route of 'calling it a day'...you of course, have to do what is right for you, but from some of the stories i've read on here, the treatment you're being offered is being offered for a reason. I can completely understand you wanting a break from treatment, but in the same vein, until you've tried the weekly taxol, how will you know? Worth a shot perhaps? Definitely keep the faith as you're a true warrior...hopefully some of the other folk on here will give you some more guided advice that will help. Big ((hugs)) hun xx

  • Hi Lesley I'm sorry Caelyx didn't work, it didn't work for me either and I then went on18 cycles of weekly taxol, I had about 3 weeks of no treatment in between as I had a CT scan and waited for results before starting taxol, i was fine starting then and seemed to have clawed back some energy.

    Weekly taxol was fine to start with but I must admit as I got to week 12ish I got very tired and emotional but I did carry on working so I just rested when I could. For me my veins were a bit of a problem but the fab nurses got me to the end. I had a couple of delays with colds etc but that was it and you soon get into a routine, I got to know other ladies well in the chemo ward and pass the time chatting, I was there for a couple of hours each time.

    Hope this answers some of your questions, wishing you the very best. Let us know how you are doing.

    Karen

    Xx

  • Hi Lesley, well it does seem the Caylex can make things worse before they get better reading from other posts but if your Onc is suggesting another treatment, then give it a try. You might regret that you never tried, People seem to have good responses in general to Taxol so on that basis it is worth the try. You will probably have a few weeks to recover from the Caylex before you begin if that is what you decide. Ultimately it is up to you and what you want, But if there is a bit of fight at all left somewhere I would go with a try. You may well get a good reprieve. Are there any trials you are eligible for have you asked about this aspect?

  • Hi.... I reached this point in my life last weekend just a week after starting just Carboplatin. I couldn't cope with Taxol and Carboplatin. But suddenly after feeling so rotten a light came on for me .... after 4 good years and now it's spreading... I thought that's it for me. I want to just enjoy what I have left.

    Everyone is different and cope differently. I don't seem to be able to cope anymore. so for me it's the right decision.

    You must make your decision yourself. You know yourself and how you really feel inside

    I hope you keep well and continue on your journey peacefully inside your head.

    The support I've had on here has been amazing and feel so blessed that I am supported by Katie's who themselves are going through hell. I am so grateful

    Lots of luck to you.... and big hugs xxxxx

  • sorry Ladies NOT katies!!

  • I don't have any advice Lesley but just wanted to wish you well- I am sure you will make the right decision for you ❤️

    Xx Lyndall

  • Hi Lesley well it's 6yrs down the line for me too, caelyx didn't work for me either my onc said I can go on weekly taxol or have a break and take hormone tablets so that's where I am at the moment but I think I will give weekly Taxol a shot if these do not hold things back

    Best wishes on what decision you come to Yvonne x

  • Caelyx for me , was a no no . Dreadful rashes ...tried to reintroduce carbo , again nasty reaction . Went on weekly , low dose Cisplatin and still here as you know on Immunotherapy trial . BEFORE all this I was on weekly taxol and did not lose my hair .

    All this seems to have kept me going , five years and eight months ( not that I am counting ) ....give the taxol a go ....why not ? You can always give up if you cannot manage it ....my every best wish to you .x

  • First big hugs xx

    No advice per sei but with decisions like this, you just know.....strange I know. You won't like the decision and actually it's not a decision in the end....it's the only option....can't explain it

    Talk to your oncologist, I have a very good relationship with mine, I trust her and she does tell me like it is.

    Dawn

  • I had a similar experience with caelyx and after 2 unsuccessful trials went onto weekly taxol. It did hold back my rapidly growing tumours and shack them a bit. I finished in august and have had 3 good months able to get away etc but the rhinos did start growing as soon as I finished and I've been offered carboplatin again starting in 2 weeks. Bear in mind I've had 8 lots of Chemo in 12 years now and it has spread to my liver peritoneum and is pressing on a tube from my kidney. the only real problem I've had with taxol is neuropathy in my hands and feet and weakness in my legs. It hasn't stopped me doing things but slowed me down a bit. I'm beginning to think I've had enough treatment now and there's really not much left for me if this doesn't work so letting nature run its course may have to happen for me soon. If I were you I would try taxol though.

    All the very best

    Francesca x

  • Hi

    Caelyx didint work for me either they stopped mine after three treatments. I was then offered two choices to have the big guns chemo and avastin or trial tamoxifen for three months. I was so worn out with the constant operations and treatments that I decided to trial the Tamixifen and it has started to shrink the tumours but who knows how long it will last. Your journey sounds very similar to mine. And I take strength that you are still fighting after 6 years as I am only 2 and half years into my journey. Unfortunately both my kidneys are affected and I have two stents. How are you coping with it I find it very challenging at times. I have also contemplated giving up but then look at my grand children and find the strength to fight another day .

  • My grandchildren have a lot to do with it, especially the littlest whom my daughter had after infertility treatment at 40 so he's only 2. She doesn't know how it breaks my heart when she says he's been asking for me (they're 70 miles away). I doubt he'll remember me cos I don't expect to be around much longer whatever the decision.

  • Hi Lesley, The others have said it all, really. I just wanted to add that Caelyx didn't work for me, either. I had an allergic reaction to it. You must do what feels right for you, but realise that a first thought might not be the one that you need. Fear, and other emotions direct our thoughts to the wrong place, sometimes. Hope that makes sense! Big virtual hug, Eileen x

  • Yes that makes a lot of sense, fear and just weariness as I've been on chemo of some kind for year now, apart from a few weeks in the summer. I'm not afraid of dying but desperate to spend as much time as I can with the people I love.

  • I'm sorry to read your post, what a dilemma, my personal option would be to build my immune system and have a break. I am not a chemo fan anyway and think sometimes it can create more harm than good, panic can cause an urge to chase the rainbow, and I get that, I felt very panicked when I recurred. Are you P53 negative or positive, as that can guide better treatment choices?

    Cyber hugs winging their way

    LA xx

  • hi Can't offer any advice, but gosh don't we have to make some difficult decisions with this rotten thing?

    Sending love

    Judy xx

  • Hi Lesley

    After 7 years of treatment inc one trial I am now on weekly Taxol again (the last time 3 years ago). I tolerate it very well, I use the cold cap so at the moment have still got some hair. The last scans a couple of weeks ago show that it is working again so it may be worth giving it a go.

    The only side effects I have at the moment is the achy tingly feet mainly at night.

    Whatever you decide I am sure will be the correct one for you.

    Warm hugs Georgie x

  • Thanks so much to everyone who replied to this. I think I will be going with the weekly taxol. If I don't I won't know how it will affect me or whether it will work. I may give myself an extra week to get fit after the stent this week though xx

  • I have had weekly Taxol recently and can honestly say apart from the hair loss it was a walk in the park compared with every 3 weeks, side effects were minimal apart from neuropathy which I can live with and they keep a close eye on! Go for it, very effective for me. Lots of luck, Claire xxx

  • Hi Lesley,

    I'm so sorry you're having to go through this. I understand Caelyx can be a brutal regime and doesn't work for everyone. I hated the effect of the Taxol with Carbo as it has left me with horrible neuropathy. That said, I've heard from other women that weekly Taxol is nowhere near as severe and I hope you consider this option.

    You have much to fight for.

    Thinking of you and sending all the positives vibes I can muster.

    Love

    Debs xxx

  • What a difficult decision... I am a planner and like to be in control as much as possible.... so even though I have just finished treatment I have thought about what I would do if it recurs and I would chose to fight until I couldn't... I know I'm not in the same boat as you but while there is hope and there is treatment then why not try it as long as you have the strength ... all the best with your decision ... sending you hugs support and positive vibes 😍

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