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Weekly Taxol for Stage 4

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Comments

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    Geeper, that is wonderful news!!! I am So happy for you and so glad to hear this!! Hope you are planning to celebrate!! Fantastic!!

  • Geeper
    Geeper Member Posts: 91

    Hi Hummingbird, thank you! It is wonderful news indeed! My son has half days on Fridays, so we picked him up from school and we went to Ports O Call, a fish market by the ocean. We picked out a huge lobster and ate shrimp fajitas. We got some ice cream and hung out by the bay and spotted some dolphins. It was a beautiful day.

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    That's really good Geeper. Well done and long may it continue.

    I also saw my oncologist this week and my tumour markers were down considerably and my swellings in sternum and neck. I have had 8 treatments so far so hoping the progress will continue. Barbar

  • shazzakelly
    shazzakelly Member Posts: 620

    Congratulations Geeper and Barb. It's great to hear that taxol is doing the trick. Long may it last.

    I am going into week 5 of the oral taxol. So far so good. I do seem to have more GI issues than when I was on the IV but nothing I can't handle. Still enjoying not having to go into the hospital every week and not having to take any premeds. I guess I need a few more cycles under my belt and a scan before we can say for sure whether the oral is the way to go but I have a good feeling about it.

    KT when were you seeing Rueben next about his plan for you? Was it tomorrow? I seem to have lost track of the days.

    Hope everyone is having a great weekend without to many SEs

  • kt1966
    kt1966 Member Posts: 1,021

    Hi all. Great to hear of good results! What a lovely celebration you had Geeper :)

    Shazza, I see Reuben tomorrow. Sheridan, whom I saw last said that the rising tumour markers (since Christmas) meant I may have to change treatments. So I will see if Reuben is of the same mind and see what treatment he recommends next if so.... I really don't like to burn thru the different options too quickly :(

    I'm glad you're finding the oral taxol mostly ok. I guess it wouldn't suit me as I already get a bit of reflux/tummy stuff.

    Hope everyone is having a good weekend. I managed to get a good walk in inbetween showers :)

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    Geeper, that was a wonderful celebration! Good!

    Barb, happy to hear of your fantastic news too!

    Shazza, wishing you continued success on the oral taxol. Glad you are feeling ok on it.

    KT, I'm hoping your increasing TM does not mean taxol isn't working for you. I have the same thing going on - big increases in my markers since December. But so far my onc isn't concerned. She is going by how I feel since my symptoms are much less and I feel so much better after 9 taxol infusions. I will be seeing her on Tuesday, and I hope - like you - that she feels I should stay on Taxol. I feel as you do, I don't want to cross off a treatment too soon as the options become less.

    Best Wishes to all for good days.

  • Geeper
    Geeper Member Posts: 91

    BarbDenise64: I am so glad to hear that your tumor markers have gone down. Hoping the next 8 treatments show great results.

    ShazzaKelly: I have a good feeling that the oral Taxol is working for you.

    kt1966: I am hoping that Taxol is working for both you and Hummingbird4.  

    Sending best of wishes to everyone.

    Monica

  • mutherflush
    mutherflush Member Posts: 85

    Great news Geeper. !!!!!!!

  • Geeper
    Geeper Member Posts: 91

    Thank you Motherflush!Heart

  • kt1966
    kt1966 Member Posts: 1,021

    Hi. I've just got back from my onc appt. he says tumour markets alone are not a reason to change treatment. Yay, so I get to stay on taxol.

    He said he uses markers as an indication for scan frequency, so I asked about a PET scan & he said CT was good enough, but then later said he'd book me in for a PET scan in May.

    I usually get 3 monthly CT scans. My last PET scan was in July 2014. What do you girls get in terms of scans, & how often?

    Hope you're all having a good day :)

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    kt, glad to hear your onc is keeping you on Taxol! I will see my onc on Tuesday and I hope she will tell me the same. I think she will. I have been having only CT scans for about a year now not PET scans. Sometimes also a bone scan. I used to get separate CT and PET scans. Once had a PET/CT scan. I get scanned every 2 to 3 months unless I have symptoms where my onc feels I should have a scan within a few days. That has happened a few times.

    Wishing everyone good day

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    Hi Ladies,

    So I saw my onc on Tuesday, and I'm set up to have a CT scan and a bone scan in a week - Apr. 18. I mentioned that I was having a burning sensation under my feet at night, plus worsening diarrhea - and she said if the scans show good results, she may put me on a 2 week on 1 week off Taxol schedule. That worries me because if it's working so well, why fool with the schedule! But she explained that she wouldn't want neuropathy to become so bad that I would have to go off Taxol completely. However, on my week off - the burning stopped, and now 5 days after treatment again, I'm fine - no burning and not much diarrhea. So mainly now - I'm first keeping my fingers crossed for good scan results, and then I'll discuss the se again with her. Hopefully I can continue with the current schedule.

    Hope you are all doing well and enjoying the day

  • kt1966
    kt1966 Member Posts: 1,021

    Hi hummingbird. I hope you get good results for your scans. And that taxol continues to be working for you.

    I've just had 2 weeks off (my schedule, although it's a 3 weekly cycle, doesn't include off weeks- it's just continuous weekly taxol) becos I've been so tired. I had hoped I would have more energy after a break, but I'm still very tired....

    My lovely family (parents, sister & her family) have just surprised me with a long weekend away this weekend in Arrowtown! (Flying to the South Island on Thursday) so hopefully that will help :)

    Take care everyone, I hope taxol continues to do its job for you all

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    kt, thank you and I hope your long weekend away will be relaxing and help to give you more energy. Sounds wonderful! Enjoy!!

  • funthing42
    funthing42 Member Posts: 236

    Hi

    Everyone I'm seeking some help. How are onc's in general deciding how they change the meds are the based on path reports. Or do they just grab something because it might work reason I'm asking.

    I have had 3 reccurrences. One of which pretty much threw me from a cute stage 1 to God knows what now.

    Skin mets approx two mos after TCH. Rads took care of the skin mets.

    But about 4 mos after I had a tiny little pimple. Now discovered it was a skin nodule. 3 nodes under axilla and 2 in my pectoral area . I wanted surgery and am not comfortable just to take meds and watch it disappear.

    I never had nodes envolvement and bc had been on the rt. Now everything is to the left.

    Ibrance and latzrole. I'm afraid. Only because the speedy way my BC repeats itself.

    Has anyone had any experience with skin nodes /met.


    Congrats on getting control of the ds.

  • shazzakelly
    shazzakelly Member Posts: 620

    KT I hope you are having a great weekend.

    I thought I'd give a little update on the oral taxol trial. I saw my Oncologist yesterday and he said they had been looking at the results of the blood tests of the trial patients comparing the IV taxol and oral taxol levels in the blood. At this stage it looks like the oral taxol is as good as and potentially better than the IV. The amount of time a tumour killing level of taxol was in the blood stream was about a day longer for the oral version and for my individual case 2 days longer. Fewer side effects are being reported with the oral trial participants.

    This is all pretty promising and they are quite excited. For me though not being tied to weekly chemo visits is still the big thing.

    Hope everyone is doing well. I'm keeping my fingers crossed for your scan results Hummingbird.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Shazza

    I had a great few days in Arrowtown, relaxing, walking & hanging out with extended family :)

    I'm glad the trial results are so promising & it's working out for you. Do you find the fatigue as bad or not do?

    Great not to have to go in each week! Hope your day goes well today - I have an early start because of work...

  • mutherflush
    mutherflush Member Posts: 85

    Hi Shazza. Good to hear from you. Glad everything is going well on the trial. How long will you be allowed to carry on with the oral Taxol?.

    Do you have to take the pills every week or do you get a break like the iv?. I have been in iv taxol for nine months now and I have had good results but the weekly hike to hospital is a chore. When scans and onc visits are schedules I can be at the hospital daily for a week. Hope they trial oral here in the UK.

    Good luck and keep us posted.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi girls,

    Hope you are all going well. I'm just popping in to say bye. My tumour markers had been going up & PET/CT scan showed a bit of progression in bones (as well as healed areas & stable areas).

    So I get a 3 month break from chemo, then I'll be starting on vinorelbine (navelbine) after another CT scan.


    Take care all

    kt

  • mutherflush
    mutherflush Member Posts: 85

    Hi Kt1966. Sorry to hear your taxol tx has ended. From your profile it seems you have had about a year on the treatment. I was on Navelbine for about 9months and tolerated it well. I have just had results of ct scan after 10cycles of taxol (30infusions). Lungs are still showing NED, bones are stable and there has been further shrinkage in liver mets. The down side is that CA15-3 markers have gone up. Onc dic not seem to worried but I have been havinv a bit of pain in my hips.

    I wish you success with you next treatment and hope you get a long run with it.

    Hoping all you ladies have pain free days and good results.

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks Mutherfush. Congrats on your good results :) I hope the markers are just because of dying cancer cells & your good run is really long!


  • Hummingbird4
    Hummingbird4 Member Posts: 220

    kt, so sorry you are leaving us here on the Taxol thread. Wishing you the best on Navelbine. May it work for you for a long time and be an easy treatment for you.

    mutherflush, that is great news! Even though your markers have gone up, your onc isn't concerned - your scan result is fantastic and that's more important! Congratulations!

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    Hi everybody. Hope you are all doing well. I am still on this treatment at the moment but not sure how well it's working. Could really do with some encouragement as am having to miss chemo this week after being in hospital . It was very scary as my blood pressure suddenly dropped a lot and my temperature shot up to 39.8 . I thought I was going to have a heart attack but they got it under control and am home now although still feeling shattered. Barbar

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    Barb, so sorry that you went through that terrifying experience!! How frightening! Do you know what caused that? Glad that it's under control and you are back home now! I can certainly understand that you are still feeling upset. I'm hoping now that you will relax and get your strength back. Will be praying for you! Take it eas

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    Hi Hummingbird

    Thanks for your good wishes. I have no idea what caused that . My white blood count wasn't very low - borderline I think but anyway it depressed me having to miss the chemo but at least I am feeling better now. Until then my se weren't too bad. Bar

  • shazzakelly
    shazzakelly Member Posts: 620

    Sorry I haven't posted for a while. Barb sorry to hear you had a frightening experience hopefully it was just a one off.

    KT enjoy your break I hope the new chemo treats you well.

    I've been on the oral taxol for 12 weeks now and just had a scan to see how things are going and I'm happy to report I'm still stable. I would have to say now I've got used to it the oral is easier to tolerate. I definitely don't have the fatigue I got with the IV.

    Hope everyone is going well. I'll try and check in more often as I do like to see how you are all getting on.

  • mutherflush
    mutherflush Member Posts: 85

    good to hear from you Shazza. Glad a.ll is going well. Stable is good especially with lass fatgue.

    Take care

  • theresalwayshope
    theresalwayshope Member Posts: 13

    Hello everyone,

    I spent a considerable part of yestrday reading through the pages on this thread.. So good to hear that taxol seems to work and is tolerable for most.

    My mother started taxol a few weeks back and has a three weeks on and one week off regimen..her condition improved remarkably right after one infusion.and it only got better after first three infusions.

    She is missing her 4th session though and we are trying she doesn't get too upset. She had fever on the day she was supposed to get chemo.. A possible urinary tract infection. The doctors won't give chemo until culture senstivty comes and no fever for 48hrs.

    I'm sorry fr the long post.. I'm just afraid of the chemo breaks since it looks like she will be missing it fr another week..it will be alright right?

    Hoping for kind days ahead for all of us :)

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    Hi everyone. I finally saw an oncologist a few days ago ( mine is sick so a different and rather less easy to get on with one) . Anyway it appears I am stable and I count that as good especially as he said I should carry on with the treatment so presumably he thought it was still benefitting me. I have had 19 weekly treatments now and I was told by the nurse they normally stop at 18 but I was going to question that knowing of others on this forum who have taken a lot more.

    I am suffering with light sensitivity with it. Anyone else having that problem?

    Bar

  • shazzakelly
    shazzakelly Member Posts: 620

    Hi Bar good to hear that you are stable. I've been on weekly Taxol for nearly 3 years now although this year I have been on a trial for the Oral version Oraxol.

    Originally I was told 18 weeks as well as that was the protocol in New Zealand but they have changed their tune about that. Generally it is neuropathy that causes the taxol to be stopped but if you don't have problems with that then there is no reason to stop. As a stage 4 who needs to be in treatment forever the longer we can stay on any protocol the better.

    Now I've got used to it I'm finding the oral version much easier to tolerate. I don't seem to have the terrible fatigue I had with the IV

    Hope everyone is doing well. We've gone a bit quiet lately. Take care

    shazza

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