Weekly Taxol for Stage 4

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  • kt1966
    kt1966 Member Posts: 1,021

    Hi all.

    Shazza, how did the rest of your time at the clinic go? Good to be home I bet.

    I'm back from my holiday. I need another holiday now to get over it! It was lovely not to have chemo tho. We went for a fantastic walk in Abel Tasman national park & had a refreshing swim afterwards in the beautiful azure blue sea :)

    Back to taxol on Wednesday. Hope everyone is going ok

  • kallamby
    kallamby Member Posts: 1

    I was just diagnosed with a single liver met 2 weeks ago. My oncologist has given me the choice of weekly infusions of taxol or xeloda. My pathology came back the same as my primary breast cancer. The tumor responded very well to taxotere the first time around so my oncologist mentioned this as a plus. She told me though one wasn't better than the other. I have to decide today for treatment to start Thursday. Any advice?

  • kt1966
    kt1966 Member Posts: 1,021

    Hi kallamby,

    That's a tricky question :) It's really up to you, both xeloda and taxol are good options.

    I've been on xeloda and found it to be easier than taxol - but we are all different. One good thing with xeloda is that it's oral do you don't have to go in for weekly infusions.

    Have you read the xeloda thread?- you can get a feeling for the various SEs by reading thru the threads on xeloda and taxol.

    Personally I have more fatigue on taxol as well as no hair & eyelashes and a bit of neuropathy in my fingers & toes (my nails are recovering from lifting).

    On xeloda I had less fatigue, very low grade nausea occasionally and hand and foot syndrome (red, cracked skin).

    Both can achieve good things for those of us with mets, stability or even regression. Hope that helps a little.

    All the best...

  • shazzakelly
    shazzakelly Member Posts: 620

    Hi guys. Just a quick update on the oral taxol trial. I am currently in the iv stage of the trial. I had my usual paxitaxel although a higher dose than usual today. I have had over 20 blood draws to check the levels of taxol in my blood. Im staying in over night as there is an 11pm and 5 am blood draw.

    I would have to say I haven't enjoyed this trial much so many appointments and blood tests, nights away from home however I do think the oral version seems to have less side effects and will suit me better so I have agreed to go on the next trial which is taking the oral full time. Tablets 3 days a week full time. Clinic appointments once every three weeks. I'm not sure how often blood tests are done.

    I will likely start the 7th of March and will keep you all posted as to how I get on.

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    Shazza, thank you for the update. So good to hear you are doing well on the oral form. Clinical trials can be very time demanding and inconvenient; I was in two - and one had a very tough protocol to follow. But we hope for the best and I just want to say thank you for continuing on.

    Just had my 6th Taxol infusion and I will have a CT scan tomorrow. I had an X-Ray which showed a possible blockage or partial obstructions due to my belly mets. I sure hope that isn't the case! But I have been struggling with stomach issues for 2 months now. Keeping my fingers crossed that I get good scan results!!

    Hope everyone is having a comfortable and enjoyable day!

  • kt1966
    kt1966 Member Posts: 1,021

    Hummingbird, I hope you get good CT results. Even if it shows something, you haven't been on taxol very long & it may yet kick in & get rid of any abdominal problems. Hoping for the best for you.

    Shazza, I was just thinking of you & the trial yesterday (long wait at oncology for assessment as the computers had crashed). I'm glad you've found the oral taxol easy and will prob carry on with it. It will make life easier :) Will your assessments be at ak onc or at the trial clinic?

    I haven't written off being part of the trial yet, but I want to see how next weeks CT looks as I've been having that left sided chest pain every now & then. Hopefully it's nothing to worry about & I can continue with taxol (lucky cycle 13 starts today!)

    Have a good day everyone x

  • shazzakelly
    shazzakelly Member Posts: 620

    Hummingbird good luck with the CT scan. I'm keeping my fingers crossed for you.

    I had scans on Monday which came back stable so taxol is really the dream chemo for me nearly 2 & 1/2 years on it.

    KT the assessments will be at Auckland but under the trial Onc Sanjeev. He is just lovely and one of the trial nurses Georgia who is also great. They will be the only people I see so more continuity than we are used to at Auckland. I'll miss Reuben though and his funny ways. Good luck with your scan too.

  • kt1966
    kt1966 Member Posts: 1,021

    Congrats on the stable CT, Shazza :) I'm so glad you're getting such a good run with taxol.

    I hope I do too!

    Great you have consistency with a good team on the trial too... I sometimes wonder if I should see Reuben privately just for assessments to get that continuity- the registrars are all lovely tho.

    I saw Naera for the first time since she went on maternity leave last time, & it looks like she's not far off another lot of maternity leave! Nice to see her tho.

    Oh, well, keep up the good work! :)

  • mutherflush
    mutherflush Member Posts: 85

    Congrats to all who have had good results. I start cycle 7 today but my toenails, fingernails and eyes are taking a bit of getting under control. Onc has suggested a dose reduction. I,m a bit reluctant cos I,ve had good scan results and liver enzymes are back to normal.

    Shazza great news that Oral Taxol is suiting you. I know you have been on Taxol foe a long time. Have you had dose reduction and chemo breaks without upseting results? Taxol was given to me after all other chemo,s had failed and I,m scared that if I start messing about it will stop working.

    Wishing you all good results and pain free days.

  • shazzakelly
    shazzakelly Member Posts: 620

    motherflush I have had dose reductions 20% all together when SEs started to get on top of me and I have had 2 planned 6 week breaks and a couple of 3 week breaks for hospital admissions without upsetting results.

  • mutherflush
    mutherflush Member Posts: 85

    Thanks Shazza for the jnfo. See onc next tuesday so will discuss reduction. Wishing you good trial results. X

  • mutherflush
    mutherflush Member Posts: 85

    Hi everyone. Saw onc yeserday and we discussed last scan in detail. She was on holiday when scan results came through and I was told about the liver lesions showing significant response. However, she gave me a copy of radiographers report and it says that my lungs are NED and only 2 lesions in liver now and both decreased by 30%. Last week eye scan showed eye tumours now very tiny and dormant. Bones stable.

    Hi Shazza My onc agreed to a small dose reduction so that my hands and feet can recover. Taxol could be my dream treatment. I hope I have a long run like you.

    I have been trying to find out if the oral Taxol trials are in the pipeline for England.

    Good luck to all who are waiting for results.


  • shazzakelly
    shazzakelly Member Posts: 620

    mutherflush what great news. Sounds like taxol is doing the business. Smile

    I finished the first part of the oral taxol trial on Tuesday and start the next stage full time oral on Monday. This trial is looking at the side effects of the treatment long term. It will be interesting to see if there is a difference to the IV. I will keep you all posted

  • kt1966
    kt1966 Member Posts: 1,021

    Fantastic, Mutherflush!

    I hope you get a really long run too :)


    I'm looking forward to hearing about how the oral taxol goes long term too, Shazza.

    I had a CT on Monday & my next assessment isn't until the 14th- so a long wait for results, blah.


  • Hummingbird4
    Hummingbird4 Member Posts: 220

    mutherflush, I'm excited to read about your great results! Hope you get to celebrate!

    Shazza, good luck with the next stage of the trial. Thanks for keeping us updated.

    kt, yes - you do have a long wait for results! Good Luck. Hoping to hear they are great!

    I got my CT scan results on Friday. Pretty much stable, so I will be staying on Taxol. No obstructions, which was thought from the X-Ray I had had. So great news there. I still have extensive belly, bowel, and bone mets but at least my symptoms - which had been very painful and uncomfortable - have improved. Belly is much less swollen, too. So Taxol is doing something! I'm very relieved to continue with Taxol because I am doing well on it. I do need to get a port soon, though, because at my 6th infusion last week, my veins were collapsed and two nurses had a very difficult time finding one to work. But this is my week off from chemo, my birthday is on Friday, and so getting a port won't happen this week! Just want to enjoy the week!!

    Hope everyone is comfortable and able to have good days.



  • Geeper
    Geeper Member Posts: 91

    I am happy to hear that most of you are responding to Taxol and are stable and/or showing regression. This is fantastic news! I am on my 8th week of Taxol and my MO will be ordering scans in three weeks. I hope Taxol is working for me.    

  • mutherflush
    mutherflush Member Posts: 85

    Thank you for your good wishes.

    Hummingbird4 hope you have a good birthday.

    Kt1966 Good luck for your scan on Monday..

    All of us seem to live from one scan to the next nit knowing what is going to happen. This disease is so unpredictable. Make the most of your good days and rest on your bad ones.

    Thoughts and prayers are with you all.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi all,

    I had my assessment appointment today & got my CT results. It showed stable disease which is good, but my tumour markers are still going up. So the onc (not my usual one) said I may have to change treatment soon, to another chemo...

    I'll discuss it with my onc next time I see him (hopefully in 3 weeks)

    I get to have my dose of Dex reduced which is great :)

    I hope everyone else is going well.

  • Hummingbird4
    Hummingbird4 Member Posts: 220

    kt, the same happened to me. My scan 2 weeks ago showed stability, but last week, one of my tumor markers was stable (after previously going up a lot) and the other jumped up another 100 points - it's been increasing about 100 points each month for the past few months. Like you, I will also be seeing my onc in 3 weeks - and I will have my markers checked again that day. Last month, my onc said she wants to go off the fact that I've been feeling so much better and my scan is pretty much stable. So I'm staying on Taxol. I'll see what she says in a few weeks! Wishing us both continued, longer success on Taxol with TM trending down!

    Hope everyone is doing well. Sending best wishes

  • shazzakelly
    shazzakelly Member Posts: 620

    KT yay for stable scans and a Dex reduction. Boo for climbing tumour markers. Hopefully Rueben can come up with a good plan for you.

    I'm on my 2nd week of the oral taxol and things are going ok. I'm starting to get a feel for things. I had terrible nausea on day 3 of the tablets last week even though I felt absolutely fine the first 2 days. This week I will get some antiemetics on board before I take the chemo and see if that helps.

    I take my first tablet which is the drug that enables taxol absorption at 6am and the taxol capsules at 7. This means I am able to eat at 11 before I go into work. I'm usually starving by then but it is better than when I was on the first trial and they did everything later and I didn't get to eat till after 1 pm.

    I think it's too early to say whether the fatigue is better or worse on the oral. I think I really need to get a couple of cycles under my belt before I can say which is better for me the oral or the IV.

    Hope everyone is doing well.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Shazza. I'm glad the oral taxol is mostly going fine - hopefully the antiemetic will help & you'll have no more nausea. It is a long wait for food each day tho! And are you still not allowed caffeine? I'd miss my first thing in the morning cup of tea!

    Hummingbird, I hope your markers start to go down to reflect how you feel :) It would be really nice if we get a long run on taxol for sure.

    I'm knackered today (had chemo) and both my kids are sick. I'm thinking bad cold or flu as they have muscle aches too- don't want it thanks!

    Take care, kt.

  • shazzakelly
    shazzakelly Member Posts: 620

    KT the no caffeine and alcohol thing was only for when they were taking the PK bloods checking the levels of taxol. It doesn't matter in general. I am allowed black tea or coffee from an hour after taking the taxol but it's a poor substitute for food

  • kt1966
    kt1966 Member Posts: 1,021

    I'm glad you get to have tea & coffee! Not the same without milk tho imo. Hope it continues to go well :)

  • mutherflush
    mutherflush Member Posts: 85

    Hi Shazza.glad it's going well for you. I'm following your progress with real interest. It seems they are going to trial it in the uk . I'm definitely interested .

    Have any of you ladies gained weight on Taxol. I have gained about 18pounds in 7 months. Tips on how to manage sore fingers and toes would be appreciated. Having trouble picking things up. Fingers really painful.

    Wishing you all good results and painfree days

  • BarbDenise64
    BarbDenise64 Member Posts: 98

    hi everyone I have had 6 infusions and just developed red sore hands . Any advice on what helps? Also how long have other people been on this? I see my oncologist later this month so I will see then if it's had any effect . Barbar

  • kt1966
    kt1966 Member Posts: 1,021

    Hi mutherflush & Barb :)

    I too have had sore toes & fingers. My nails got all funky at one point and the nail beds extremely sore so my taxol dose was reduced (after I had a week off).

    Now my nails are returning to normal, but I did have another dose reduction when I developed peripheral neuropathy (numbness & tingling in my fingers and toes). I still have it but it hasn't worsened.

    I have been stable weight wise. I'd like to lose a couple of kgs, but at least I'm not putting it on. Trying to walk for exercise and do Pilates when I'm not too tired (tired nearly all the time!!)

    I haven't had red hands, not sure what that's about Barb. I did when I was on xeloda, but not taxol. Your onc may reduce your dose a bit to help I guess.

    As for how long I've been on taxol- since June last year. I'm on cycle 14 (weekly taxol, 3 per cycle, no breaks apart from 2 when I went on holiday for a week and 1 when my nails were funky). So that's around 40 doses so far. I know Shazza has done over 100! So if it's working you can stay on it a long time.

    Hope that helps

    kt

  • mutherflush
    mutherflush Member Posts: 85

    Thanks for the info KT1969. My onc has reduce the dose by 25%. Im concerned this may be too much and it wont work. How much reduction did you have and did it still work as well. Ive had 21infusions so far and the results have been amazing. I start my reduced dose on thursday. How long did it take for your hands and feet to recover.?

    I try to walk too for excercise. Up to the last few weeks Ive been swimming at least twics a week but toenails not good after being in the water so put it on hold.

    Wishing everyone good luck with result, scans etc.


  • kt1966
    kt1966 Member Posts: 1,021

    Mine was dropped 25% first time then upped 15% when the tumour markers started going up again (I guess it is a risk that the dose could go too low, but they can keep an eye on it). Then it was dropped to halfway between the two last dosages when I got neuropathy!

    My hands and feet are pretty good, nails recovering, but still a bit of neuropathy that's not worsening. I can live with it as it doesn't really affect day to day living.

    I hope yours recover soon :)

  • mutherflush
    mutherflush Member Posts: 85

    Thanks Kt1969. I was worried that the dose could not be increased if need be.


  • Geeper
    Geeper Member Posts: 91

    Hi everyone, I will be having my 13th Taxol treatment this Monday. I saw my oncologist on Friday and I received great news. My lung nodules, lymph nodes, and breast mass show over 50% shrinkage. The Taxol treatment is working. I will continue on Taxol until I show no evidence of disease.

    Wishing all of you the best.