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
I couldn't have avastin due to risks associated with bowel surgery I had. My paclitaxel has stopped 22 Jan, my CA and cancer spread are rising so there's nothing they can do now 😢
Kazzh I’m so so sorry to hear that . What about looking for trials. I have only half a bowel and I’m on avastin . Don’t know what to say to you . Try and keep hope . Will keep you in my prayers. 🙏🙏 sending you a big hug 🤗 xx
I had avastin with first round of chemo but had alot of issues like bleeding nose all the time. After blocked bowel surgery, they said its too risky as blood vessels can bleed or something and cause perforation..not sure really. If I have it now we have to pay and it's very expensive 😔 My team say trials only offer 10% chance of success so I'm sticking with my alternative medicines plan for now. I'm going into a hospice for some rest & hopefully come out feeling better once pain meds are reviewed 🙏
Nothing we can say really, we only do our best, so don't worry, and thankyou xxx
kazzh I’m so sorry . Always in my thoughts and prayers . 🙏🙏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
Dear Kazzh I've been thinking about you. How are you doing at the moment? I hope you're managing the treatment a bit better x
Hello 👋 Well not going quite so well. I'm tolerating weeks taxol more so still on 80 dose but my CA125 has continued to rise throughout. I have a CT scan 4th Feb 🙏. I had a PICC line fitted, & got blood clots plus severe anaemia over Christmas which put paid to an enjoyable week off chemo. I'm having a PET scan for suspected tumours in other areas of my spine. Feeling very tired 😴
Starting an alternative meds protocol atm but it's very costly so my family have set up a gofund.me page 🤞 At least I've got my hair this time as cold capping too 🥶
How are things going with you? I haven't been on here ages sorry 🥰
Oh Kazzh bloody hell. What a crap Christmas. Could you please post the link to the gofundme page? It's the only way I can help other than send you a massive hug xx
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I'm sure you have enough yourself to think about buy as you asked here is the link xxx
Thank you Kazzh, I have donated.
I have also raised £850 for a different OC charity which funds research and education by walking 50 miles in January. I know it won't make a direct difference to you, but wanted to share and say I stand by you and all our OC ladies in solidarity xx
Hi Kazzh I was also thinking of you I am also on the weekly Taxol just had one so far with a rescan after 8weeks That is so disappointing that your week off was ruined I hope the blood clots are under control now Sending you positive thoughts and prayers x
Bless you, you too 🥰
Hi Kazzh
Sorry to hear what you’re going through. It’s tough! I’ve just finished my second month of weekly paclitaxiel. It’s my only option now. The fatigue is debilitating but my main concern is the development of peripheral neuropathy in my hands and feet. I’m feeling very anxious and depressed. Nothing can stop it or help and it’s just getting worse. Really don’t want to reduce the dosage but I reckon it’ll happen. I’ve got another four months to go of this, scan permitting! CA125 not changing so far. Sending hugs and positive energy to you.
Carol 😘 xxx
Bless you. Neuropathy is rubbish. I had a similar thing more like restless legs where I couldn't stay still. Like millions of neuro transmitters firing off in my hands and feet. It was truly awful and affected my mental health. Are you sure it's not that? In the end magnesium and replacing electrolytes helped and thank goodness it's stopped. Sadly for me, after 2 months of taxol it's not working, my scan shows severe spreading and all treatment has stopped 😔 I'm desperately trying to come to terms with a prognosis of months to live whilst trying to control my pain which is bad. Today I had a full on panic attack, first ever, it's the stress of it all. My CA level rose alot, if yours is steady that sounds more positive. When will they scan again? 🙏
Oh Kazzh
I’m so very sorry to hear your prognosis! I can imagine what you’re going through as that could so easily be me. Hopefully you’ve got good support around you. It’s all so massively scary though. I have definitely got peripheral neuropathy unfortunately. I can see it stopping my treatment tbh as it’s getting worse. I’m due a scan in a months time.
Take it one day at a time my dear and practice lots of self care. Sending love and hugs and know that you’re in my thoughts.
Carol xxxx
Sorry if I've given you less hope by sharing this, not my intention ofcourse. I pray you will be in a better position. I went to my church chapel today to pray 🙏❤️ xx
Well sadly it looks like I’m joining you in your prognosis. Just been told treatment not working. Palliative care from now on, months left to live. Can’t take it in x
Oh no 🤦🏻♀️ this bloody cancer business can do one! I'm getting fed up of it taking control. I'm going to send you a private message to follow an alternative medicine path I'm following if you'd like it? Worth a try & my family have researched it for months for me. I'm so sorry 😞 xxxxxx
My dear Kazzh I was so sorry to read your post I suspect the Taxol wont work for me either but in the absence of options i am threading along the road with it My CA 125 has jumped up into the 300s but team seem content to keep with the Taxol for now Back in Oct 24 when my recurrence was diagnosed I pressed the Oncologist to know my prognosis as it was important to me to know I was told back then my lifespan would be measured in months It was very hard to process even though I insisted on knowing it was a shock I was thinking 2 yrs like Sir Chris Hoy Although I have processed it all now and feel at peace in myself with it I never did go for counselling but you might find it helpful to talk through? The other thing I have noticed about me is that when I am nauseated weak or in pain I cope much less well than when I am comfortable Is there a particular Dr who is managing your pain? Could they get it better under control? I think of you often and will pray the pain gets controlled 🙏
Hello, I'm under my community palliative care team at St Catherine's hospice. They are struggling to control my pain as it isn't obvious what's causing it. I have hip and lower back pain which could be unrelated. I agree it's so hard to function with severe pain. You must keep on to get it sorted, will think of you too 🫠❤️xx
Hi Kazzh, I just wanted to send love and hugs your way. I’m not sure if we’ve had contact with each other before now but I always read your messages and I’m so sorry to hear your treatment isn’t working. I do wish you luck with your alternative treatment, please send me your gofundme link. Much love to you Sally xx
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Bless you, thank you xxx
Done ❤️
Hi Kazzh Could you send me the link to your GoFundMe page? I am rubbish at technology Thanks x
Post chemo side effects?
Caelyx side effects
Different chemo side effects after surgery
caelyx side effects
Niraparib side effects - low platelets
