Hi Ladies.
Well the saga continues! Telephone call with consultant today. She had to ask if I'd had a scan before she found it on the system. After a quick look at report concusions it was evident that Caelyx was not working so she would try weekly Taxol. Three weeks on then a week off.
Has anyone else been on this regime and how was it for you.
Afraid I am running out of options so hoping this may be "the" answer.
Hope everyone keeping as well as possible.
Janet
Hi Janet. Sorry to hear that Caelyx didn’t work for you. I have no experience with weekly taxol but a number of others have and I am sure you’ll hear from them soon. I think several people have found it effective and tolerable except for the hair loss. Xx
Hello Janet
I have been on weekly taxol for six weeks at a time twice. I found it quite easy. I used the cold cap for all of it. I lost some hair but not very much. It suited me but we are all different.
Good luck with your treatment.
Kathy x
Thanks Kathy
Lost my hair nearly four years ago when treatment started with Carbo/Taxol/Avastin. Came back better than ever so not too worried.
Became Platinium resistant hence Caelyx which did not work now another go with Taxol.
Hope you are keeping as well as possible.
Janet
Hi Janet, I’m having my third infusion of caelyx next week for first recurrence - I was told we’d reaccess after that to see if it’s working. 🙏
After initial dx and surgery May 2018 - I had 18 consecutive weeks of Taxol - with Carbo added every third week. Fatigue was main side effect which I’m also experiencing with the Caelyx. The hair grew back. Thankful for the 2 years NED from Taxol. Hoping to do as well or better with the caelyx.
Blessings to you!
Elayne
Hi Elayne
Thanks for reply.
I have become platinum resistant hence Caelyx which unfortunately did not work for me and now Taxol.
Hope the Caelyx works for you .
Best wishes
Janet
I had weekly Taxol, & I found it easier than Carboplatin or Caelyx, found I didn't need the anti sickness pills I was given, & although my hair thinned a lot, I didn't lose it all, although I was told that is unusual. Di
Did the hair you lost come back, Di?
Hi Di
Hair returned with a vengeance, very thick and curly as soon as Taxol and avastin stopped.
After a few cuts soon came back to normal but with a lot of grey which I quite like and intended to keep.
Good luck with everything
Janet
Yes. I would like to say it came back brown and curly. But it came back straight & grey as before. Di
Hi Janet
I have been classed as Carbo resistant and Caelyx didn't work for me either. Today is my second Taxol only infusion. So like you l am pinning my hopes on this one working.
Good luck.
Sylvia
Hi Sylvia
Thanks for reply.
Sounds as though we are following a similar path.
Really hope Taxol is the answer.
Good luck with your treatment
Best wishes
Janet
There have been many useful replies to your thread. I have made notes about the drugs unknown to me. Thanks everyone.
I did weekly taxol for 18 weeks with no breaks (+ tri weekly carbo). I found the taxol to be really doable, only downside was my veins weren’t very happy by the end of the course, so a PICC line or similar might be a useful option to consider.
I felt that the really beneficial side to weekly taxol was the close monitoring I received with weekly bloods etc so we knew just where we were at.
I truly hope this regime works for you, take care and be safe ❤️Xx Jane
Hi Jane
Thanks for reply.
Veins already worn out after four years of prodding and poking so some kind of line could well be helpful.
Fingers crossed this one works.
Hope you are keeping as well as possible.
Janet
Hi Janet
I was on taxol and had 4 infusions every time a rash broke out on my face like you I was worried as I was running out of options my onc decided it was not for me, but pulled another option out of the bag thank god, its called vinorelbine which seems to be doing the trick my ca levels are dropping, not too many side effects up to now, I had my 4th infusion yesterday and feeling good. Another option maybe you could inquire about it with your onc if needed.... Wishing you the best of luck with taxol hoping it works for you and gives you a long remission
Loren x
Hi Loren
Many thanks for reply.
It's always nice to have another "possible" in the armoury.
Hope all continues well with you and that somewhere there is a solution to all this.
Love and Best Wishes
Janet
Yes Janet I was really surprised with my onc when she was willing to try vinorelbine at present she is looking for a trial she did mention there may be something at the Royal Marsden so fingers crossed, will keep you updated on progress, its always nice to be armed with other options when oncology appointments are due.
Best wishes
Loren x
Thanks Loren
I am in it easy
.sun sensitive so spf 50
Hi Janet-
I just started Doxil(Caelyx). I know it’s only a 19-33% if working how many treatments did you get before you found out it was not working?
Taxol worked for me first time around in 2016. It causes neuropathy one feet and hands.
Good luck to you. I also am running out of options. Did you get tested to see if you can go on a biological? I am waiting for results of the PDL1 tumor marker to qualify for Keytruda.
Prayers, Carol
Hi Carol
Thanks for reply.
I had three Caelyx infusions. A scan after the third showed slight increase in cancer so Onc decided it was not for me.
Luckily she opted to give taxol again, although a lower dose and as a single agent.
Will enquire about bio test, always nice to have something in reserve.
Best of luck with your treatment. Hope Caelyx is the answer for you.
Best wishes
Janet
Hi Janet. I started chemo last Sep...infusions of Taxol, Carboplatin and Avastin. Brought my CA125 down after 8 treatments. Doc told me Taxol is a strong but effective drug. Anti nausea drug was included in the infusion which did control being sick. Also, with Taxol, I did lose my hair but no worries, it grew back after final chemo. Hope this is of some help.
xo
Evelyn
Thanks Evelyn
Good Luck with your treatment.
Janet
Hi Janet
Like yourself I came off Carbo/Caelyx when it stopped working for me. I started weekly taxol on 15th May and have found it so far quite doable. I have had 11 sessions so far (having no 12 tomorrow). I have lost a lot of my hair though am not completely bald yet. The major side effect I find is tiredness but it has been much easier than the carbo Caelyx. My mid treatment scan was encouraging and showed a mixed partial response ☺️ with some lesions shrinking and others growing a little bit. I hope to have 18 sessions.
This is my 6th line treatment and I was diagnosed in September 2016.
I hope this helps. Sian xxxxx
Hi Sian
Many thanks for reply. I too was diagnosed September 2016. I started on Carbo/Taxol/avastin. Only had two infusions of this before it dropped to carbo only.
Had three lines in total of carbo before it stopped working and I started Caelyx. Had three rounds of this ( ended up in hospital at the end of last two with "undiagnosed fever". My midway scan showed slight progression so here we go again.
Brilliant to hear that you are coping quite well, fingers crossed I will follow your route.
Hope the Taxol works well and we both get long remissions.
Thanks once again for your input.
Love janet
I had weekly taxol infusions, was set for 12 but had to cut it short due to neuropathy in my feet, had 9. Tumor most definitely shrunk. Good luck!
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