Hello ladies
I've started weekly Paclitaxel and haven't felt well atall on it this last week, tummy pains, nausea, tiredness and generally feeling rubbish. I have my next dose in 2 days. I'm worried it's going to be like this for 3/4 of my time on it (one week off) There are no other options I've been told so it's my only hope, (poss trials but nothing available atm)
How have others experienced this? It's such a tough journey, I just feel exhausted 😩
Kazh, I’m so sorry to hear of your very tough journey. Why not try immmunotherapy and/ or bevacizumab? I assume you did molecular testing of the tumor to see what mutated? Wishing you the very best of luck and ease on this treatment journey 🍀
Thankyou, is molecular testing a standard NHS test? It was confirmed I have the rare clear cell cancer at the start. I can't have Avastin due to risk of bowel perforation after the 2 abdominal surgeries I've had. Think my team are trying what's available to them after Caelyx didn't work. I'm feeling very despondent, especially as they've given me less than 6 months if I have no treatment atall x
Dear Kazzh, so sorry Caelyx didn’t work for you. I’m not clear cell so cannot help re treatments but have heard of continued success with weekly chemotherapy. Hopefully your symptoms subside enough for you to continue or a trail is found.
Wishing you all best and have a lovely Christmas. x
Not sure if molecular testing is standard in the UK, but immunotherapy should be available for clear cell patients who have recurrent disease. Ask your oncologist if immunotherapy is an option or other targeted therapy geared specifically to your mutations (the only way to find which mutations is to do a next gen sequencing test Or immunohistochemistry test on the tumor specimens or slides - both of those tests referred to as “molecular testing”). Please advocate for yourself by asking these questions and if answer is no, then ask why not. Praying for you and wishing you all the best in treatment 🙏
I will definitely request this thanks do much 😊 xx
Sorry to hear you're feeling so unwell. Speak to your team, they may want to reduce your dose so that you don't feel so rough. Sending hugs.
Dear Kazzh, as we have been in touch before, you will have a good sense of my feelings as you share this with us all.
I suggest you ask your team about 'Emend' or 'Zofran' as Emend helped me with nausea and all the side effects of dose-dense carbo-taxol + Avastin. At the time, I was able to access the Emend privately through health insurance as it contains a cannabis derivative and in 2013, NHS would not consider it as an option. Times are moving on in attitude to cannibis to relieve pain etc. , so maybe worth a question?
Before writing this I 'googled' Emend - still available but Zofran given as an alternative.
Warmest wishes and a hug, L x
Hi kazzh ,
I started taxol . I’m on my third cycle . I’m also on avastin but didn’t commence this until six weeks following commencement of the taxol . She said if I didn’t take the treatment I only had a few months . I missed it for a week as I was so ill . Couldn’t even make a cup of tea I was so weak . I commenced on 80% of the taxol as my neutrophils were low with previous chemo . When I couldn’t tolerate it they reduced it to 60% which I am now tolerating. Would that be an option for you ? . My CA125 has reduced from 1115 down to 556 . I’m having a scan on Friday. Maybe a reduced dose would help . I really hope this helps and you start feeling a little better soon . Xx
Thankyou so much! I'm so glad to hear your CA has reduced, it has all been worth it by all accounts 👏 I'm on 80% of dose atm and so yes room to reduce it. Will see how I go tomorrow and next Thursday & hope I get some good days what with Christmas etc 😊 xx
Hi Kazzh I haven't had weekly Taxol yet I have just had number 3 of Caelyx Was supposed to have Carboplatin with it but have had a reaction to it last 2 sessions I have been told if progression on CT in 2 weeks the option is weekly Taxol My thoughts for you would you contact your oncology helpline and seek anti nausea and steroid adjustment and also speak to Onc about dose reduction? Hope it gets sorted
I've just been told I need a blood transfusion so this could be why I feel so awful. I've spoken to my nurse who has reassured me, and has advised keeping going with tomorrow and next Thursday chemo and reviewing dosages etc on my week off. I feel happier it's in hand & I get a transfusion tomorrow THANK YOU ALL SO MUCH for replying ❤️
I had a blood transfusion on Monday and it has made a big difference to the exhaustion Hope it does the same for you x
It really has. And glad it has for you too. Hope you have an enjoyable peaceful Christmas xxx
All I can say is I'm so glad to see you are getting some advice here from those in the know. I would have no clue myself as I am still confused about my own histology etc. it must be exhausting advocating for yourself so facts at your finger tips are vital. I think of you often and send a massive (but useless) hug. xx
Caelyx side effects
Different chemo side effects after surgery
caelyx side effects
Niraparib side effects - low platelets
Paclitaxel reaction
