Hello I don’t post much but read all with interest and try to share a little when a post crops up that I believe may help a little..! Well yesterday I finally - after a year or so - had some good news!! I went through a grueling 6 months on Caylex / Carbo ( didn’t work for me at all and more tumours grew too..) and weirdly ended up in hospital at the Christie here in Manchester! Well they started me on Taxol here and I decided to temporarily move up. I didn’t get into the clinical trial unfortunately and this is the second time on Taxol and they were clear it may not work a second time around. Well... from having been sitting a few months back in my house chatting to the palliative care lady ( she was lovely but it really did feel like an end of the line chat..) I am suddenly doing cart wheels ( well metaphorically!!😂😂) as the Taxol has suddenly kicked in and is working! I had my half way scan results yesterday .My CA125 which had been going up and up has suddenly decided to plummet down to 19 (!) and two main tumours have halved! I cried I must admit as was shakily clutching all the next ‘what next ‘ questions... So if there are ladies out there who feel like they’ve been through all the chemos possible...it is just possible to try something again - you never know. I felt like I was truly running out of options (BRCA neg and Carbo resistant) so please ladies - don’t give up sometimes there are small wins to be had. Love to all of you as we carry on day by day 🙏❤️
To give those “resistant” ladies a bit of my go... - My Ovacome
To give those “resistant” ladies a bit of my good news..
hopefulgal1 — so happy to read this and congratulations. You’ve been through a lot and those tears of joy were well deserved! I’m so glad and hope to continue to see such positive updates. Xo
Thank you so much Maxjor - and the same for you too please! X
Amazing news! Hope this all continues through your remaining doses of taxol and you can get a break at the end of it.
Vicki x
Ah that would be soooo lovely a break - a long one - is what we need ( have a husband who really deserves a holiday that isn’t always cancelled!!) x
That's truly fantastic news. No wonder you are doing cartwheels! How long ago was it that you had taxol? Was it also weekly?
Back in 2015 - I was working in Cape Town when diagnosed and they did Carbo first ( worked for five minutes) then Taxol next weekly with a fourth week off and it worked well for me ( well enough for me to fly home to the UK and move home!) thank you xxx
Fab news - like you I was in 'talks' with the local palliative care team and I'm BRCA neg and carbo resistant, but as you know cisplatin has done something for me. You just never know. Celebrate your win! x
Yes you brave lady!! We just never quite know what is going to happen next but it’s great to celebrate these small wins eh?! Thank you so much x
Oh what a fantastic post! Congratulations! xx So pleased for you xx
Thank you Kat! X
So glad for you :). Fingers crossed the trend continues. xx. Maus.
Thank you Maus - much appreciated 💕
Fantastic, really pleased for you
Fantastic news!!! 👏🥂Thank you for sharing. It will give so many people more hope. Let's hope the next three sessions carry on and do more good work. 🤞
Love, Solange 😊
Thank you Solange! I so hope so... a little glimmer anyway! We are all trying so hard. Love to you and your loved ones too.
That is fantastic news and encourages us all to never give up, as you said, there are small wins to be had! Hope your treatment carries on doing the trick and you continue to feel well and have great success with it!!
Best wishes
Liz Xx 💖
That is also so well said Liz and I wish you all the very best back to you too 😊💕
This is amazing!!! Just what I need to hear right now, plat resistant, BRCA neg, failed caeylx and progression!!
I start next week on taxol weekly. Please god let it be as successful. Enjoy and thank you for sharing xxxxx
Dear Jessica I SO hope that the Taxol works for you... And if the ca125 goes up at the start - hang on in there! A very big hug to you and love. T x
It has indeed gone up 😔
So Re Reading your post to give me hope 🙏
Thank you so much for posting your win! As amazing as this group is with sharing experiences it’s soooooo refreshing to see good news!! Very pleased for you! ☺️❤️ xxxx
Thank you so much and glad to make you smile! X
What fantastic news Hopefulgal. You can now be truly hopeful 🙏🏻❣️
Thank you! Yes indeed... keep on keeping on as the song says..! Xxxx
Thats a great news hope this will continue working with better and better results 🤞🏻🤞🏻 ...best of luck🙏🏻
tamey,
Thank you!! X
That's great news! Hope that CA125 carries on going right down and the tumours keep shrinking!
Barbara
Thank you so much Barbara! X
That’s lovely. I’m BRCA negative and platinum resistant so news like this is always good. Congratulations to you 🥂
LA xx
Thank you Liliy Anne - I so wish you an easier time of things too : much love T xxx
This is indeed something worth doing cartwheels about even if they are metaphorical. I did want to make a clarification. Taxol is not a platinum drug so being platinum resistant has no bearing on its efficacy. Taxol is often used when a patient cannot tolerate platinum based drugs. That said I do believe that even though often we may be classified as platinum resistant there are instances when re-treating with platinum can be effective.
Yes indeed - all correct! Thank you x
I’m so pleased go read this, I’m pretty much the same as you, BRCA neg, platinum resistant. I’ve just had Caelyx stopped as it wasn’t working for me either and I’m going onto Taxol, I hated it last time and am dreading starting on it again. Your post gives me hope that it will be kinder to me this time and I’ll finally get to have a break from treatment. Well done xx
I so hope so too! ItS been nothing like as bad for me as the caelyx Carbo ! I know we are all so different but wishing you an easier successful time on Taxol! Keep us posted...! X
That's great news ❤️
Thank you so much for this post. I've an emergency meeting next week with my oncologist as I would like to try taxol or taxotere again. Both of them put me in hospital after just one dose but I believe that one or other of them were the only drug that made a difference. Since then nothing has worked and now I'm at a very dark place. I shall quote your success and hope I get what I want. So pleased and happy for you and keep us posted. Can you tell me if it's weekly low dose or every three weeks? I'd like to try weekly this time and hope that the side effects are milder. xxxxx
I’m on weekly Taxol, three weeks and one week off, Taxol dose is cut in to one thirds the side effects are milder, had three and one week off, so start again this week, total weeks for me is 12, some have sixteen and others 18. The neuropathy in my hands and feet not to bad at all my doctor was more worried about that, as they would have to stop it. I’m crossing fingers so far so good. Worth trying . All the best to you keep strong. X
Thank you. It was the neuropathy which went into overdrive and paralyzed me so was told no more taxol. The taxotere next wasn't much better as I was so sick on it. Out of the two I think I'd go with the sickness as there's a better chance of controlling that although my neuropathy virtually cleared up with animo acids after. Thought I'd be paralyzed for life. It's my body after all so I think it's time I started to get tough. Up until now I've just gone along with what everyone has said, not asked many questions and not made a fuss. It's my boys who are insisting I start to make a noise so I'll do it for them. Got to find my big girl knickers again. I am really hoping that you, Hopefulgal and I - and t he rest on taxol too of course - get some satisfaction from it. I get my CA125 results tonight and dreading it. But, have to face it. Take care xxxx
Hope every thing goes ok for you, it’s such hard work fighting this disease taxol/carboplatin brought my marker down to twelve but within three months it was back again going higher then I had Carbo/ Gemcitabine and that did not work, so hopeing this will work it’s trial and error with everything, crossing my fingers that and feet that this treatment will be kinder. All you can do is ask see what they say. Good luck let’s us know how you get on. X
Hoping that things improve so much for you - courage and strength to you xxxx
I so hope you are successful Kryssy : I am on weekly Taxol ( with no fourth week off which they did before in S Africa back in 2015!) you sound similar to me - it has been the only type of chemo where I had any success : I so hope things work out for you. X
Wonderful to hear your good news after all you’ve been through. All the best Jo 🌺🌼🌸🌻🌹
Thank you Jo xxx
Hopefullgall 1 - Cancer 0 -Love to read such wonderful news!!! - Today is going to be a good good day!!!!
Thank you so much Lyn! And the same to you... yes a “good good day” is definitely worth enjoying! X
Awesome news. I’m in the same boat as you, plat res etc. I’m waiting to start weekly taxol when I get my bowel obstruction under control. This post has given me some hope when there seemed none. Thank you so much and well done, such great news xxxx 🌻
Dear Diane - I felt just the same and seriously when my CA125 continued to go up I felt even worse! But what made it suddenly kick in? Who knows - I have started on Manuka honey and black seed oil too but honestly think Taxol just works hard - good luck to you and don’t give-up!! 💕🙏🌿
Awww thank you xx 🌻
Great news for you. Get a good holiday booked now.
Ah Katie I can’t tell you how many things I’ve had to cancel - but once I have that final scan and good results (🙏😄) hopefully - I will book that long due holiday! Thank you !! Xxx
Wow that's amazing! Long may it continue. Xxxx
Thank you so much LittleSan! And may you too get good scan results when yours are due xxx
Ah thanks. Started chemo yesterday. All fine. Xx
Were you having chemo yesterday at the Christie? Xx
Yes! We’re you there too?
Yes if you were on team 4 and sporting the natty coldcap, I was a couple of chairs away in the stripy t-shirt. If not she was someone who looks very similar! Xx
Brilliant news, that's really fantastic and long may it continue xxxx
Thank you so much! X
Fantastic news!
Thank you Alison! And you? I so hope that another trial has come along for you? X
I see my oncologist next week to look at possibilities.....
I am so happy and thank you for all these responses! It is a little glimmer for now so shall cross my fingers that my final scan is even better and only 7 more chemos to go now!! Thank you all SO MUCH! Xxx
What a fabulous post, I am so pleased for you and I got goose pimples reading your story. I can only imagine your joy. It really does go to show that sometimes there are options. I hope the taxol carries on doing it’s job for you and you get a well deserved holiday. Keep up the good work lovely lady ❤️Xx Jane
Thank you so much! 💕
Thats amazing news congratulations xx
Thank you, thank you, thank you for your inspiring words! 🙏🏼💗
Glad it’s helped a little xx
So so happy to hear you are getting some results from the Taxol. I have got a big smile on my face. xx
Hugs Ellsey xx
Thank you! Smile back too...😄 xxx
That’s brilliant Hopefulgal! Always a boost to hear anyone’s good news. I’ve not been on here much recently as have felt so rough last 6 weeks or so. I’m also plat resistant, BRCA negative, and taxol has worked twice for me. I was having it for a 3rd time with gemcitibine but after an initial drop my ca125 started climbing again, so it was stopped after 3 cylcles. I’m wondering if it might work again if I re-start as nothing much else to try now, I’m going to ask my oncologist next week. Your story brings hope to so many of us, even knowing that we are all different.
Long may your good results continue,
Love, Madeline. Xxx
Thank you - and good luck to you too. We are all different but let’s all try to keep hope going ...so carry on brave lady xxxxx
Thats great news.. im on weekly taxol had it back in 2015.. worked for me then.. ive had 3 cycles then my body decided i should have a dose of ..(shingles)... so consultant stopped my treatment for a month.. she thinks i need a break.. i was abit hesitant as so used to having chemo and thinking if i dont am i going to get worse.. but i think my body was telling me im waiting on brca test result ... thank you for saying taxol could/can work 2nd time round gives me hope xxx sending you hugs xxx
Thank you - and sending you a hug back too xxx
Wonderful news! May it long continue. Like many others, I'm BRCA neg and platinum resistant. Just started on Doxil (caylex)/Avastin for my first recurrence. To early to tell if it's working, but your post gives me hope that there are other things to try. Carbo/taxol for frontline did the trick for me; it just didn't last very long. Keep us posted! Hugs from Seattle USA
Absolutely thrilled for you. May the taxol continue to work and results in a full remission. HERE is hoping. Chris
Thank you dryden1 - so appreciated!
Dear Kat - I think you ladies across the pond seem to have a few more choices than here in the UK if you are on the right Medicare etc... so do wish you much luck and wellness! All the best and thank you xxx
You are INDEED a hopeful gal! I am so happy for your news and I thank you for sharing it. Hugs of happiness!
Thank you CynD - much appreciated xxxx
How lovely that the taxol is working so well for you, especially after the tough and disappointing experience with Carbo Caelyx. What wonderful, happy news 😄xx.
Thank you so much SCW - a relief and long may it continue!🤞🙏
So happy for you! Thank you so much for sharing such wonderful words of encouragement. Wishing you continued success, health and, above all, happiness!
XOX
Marisa
Thank you so much Marissa! X
Brilliant news and very encouraging for others. Well done and keep it up!
Thank you Dawn - and to you all the very best also! Xxxx
Omg 🙏 maybe it can do some magic on me🙏 Great news god bless xx
Thankyou Jools - heAding towards final scan so fingers crossed...! And love and wellness to you. X
Do you loose your hair on taxol🙏
Hi Jools - yes you do but sure your team will support you through that mine seems to be a halo of fluffy white hair and I’ve done 13 of 18 so still not resorted to wigs etc but to be honest : I just want it to work: the hair will come back later! Xxx
What a great feeling those results must have been when you heard them! And ca125 of 19? Tumors halved? I would be doing metaphoric cartwheels too! So glad for you!!! oxoxooxxo
Fantastic it’s always lovely to hear good news - cartwheels 🤸♀️ all the way 😊 x
Thanks Girt! Fingers crossed it continues - all the very best x
Hi dear
My mom is also chemoresisant and it feels like end of road for her too what is the dose of taxol you are taking
I am sorry have no idea - I have it weekly for 18 weeks. Sending you hope and well wishes to your mum xx
Hi Great news hope it continues ..Take care Lorraine xx
Hi , just finished reading your post again about Taxol, I had my second opinion yesterday and the prof suggested Taxol, I did have it at first treatment about 3 years ago.
I'm now going back to my oncologist with the suggestion that the prof has given me, I was not sire what to do but your post has given me hope . i was told no more options and put on palliative care so maybe this will be a option.
How are you going ? hope the good results have continued..Take care Lorraine xx
Hello! Just saw this Lorrraine... so wishing you luck with this next option. I have my final scan next week.. I am super nervous as can feel enlarged lymph nodes in my groin again so am still taking oxycodin etc .. which makes me feel it may not be great news. I am recovering from final no 18 having a scan next week and then results on 1st November. So hoping that the news will be positive but just taking a day at a time right now. I think if it gives us more time it’s a really handlable chemo: I suffered a little neuropathy in my fingers the last 2 but otherwise fine ( nothing like as bad as Caylex!!) sending you love and hope...T xxx
Thank you for sharing. We need good news. I was discharged and told I’d reached the end of the road in January. I fought though to get a mek inhibitor. Not only am I still alive ( after being given 3 months) I have had stable cancer for 6 months. So I understand and share your delight x
I have plat resist (braca negative) high grade serous epithelium OC. Initial stage 1. Treated 6 rounds Carboplatin with till end june2018. Did not feel confidence outcome despite Oncologist insistence’s and asked for more bloods and scan in oct 2018, which confirmed fears and cancer back in retro peritoneal lymph nodes which dines grew even more by dec2018 CA125 also shot up. Started weekly Paclitaxel and 2weekly Bevacizumab with 4 th week break for recovery. Told from October scan that disease incurable and given months to live despite taking treatment. Treatment no end point as such, it continues to the point
A. Not making any impact on bloods or tumours
B.i can’t cope with increasingly brutal side effects.
Currently into week 13 of treatment and ca125 been falling & now “Normal” for last 2 months.Check ct also no sign of disease st 11 weeks. Head a total mess now as don’t know what it means, is there a longer term prospect? I can’t carry on with side effects from drugs but oncologist says not and will not be cured, to carry on till it comes back or I get to end of my tolerance. Cailyx also suggedted if hhis fails. Where to now??Sorry such a long message but awake through the night(steroids) and trawling for answers. I don’t know how or where you are in journey now as last post 5 ago. Wherever you are I wish you peace and love. 🙏
Sorry to be a bit of a negative person today... it was so hopeful but now I’m not on any treatment.
Good luck to you too on your own journey xxx
No good news
Taxol vs docetaxel
Chemo Stopped 
Right decision ?
