My recent CT scan has shown new mets in the liver and the existing mets have grown a little. All other mets are stable.
Xeloda has been stopped.
My Oncologist has suggested I should now go on taxol. However, she has also offered me two other options to consider Epirubicin or an oral drug called Vinorelbine.
I am very scared of IV chemo so I’ve been given up to a week to digest things and reach a decision on what to try next.
I’m very upset having to face yet another treatment change and it appears that my liver doesn’t want to respond to treatment with so much recent progression.
I would welcome any thoughts or suggestions you may have.
In the meantime, I’m trying to be brave ... and hope I reach the right decision on my next treatment.
Jo xx
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I am so sorry and I know how you feel. I had to stop Xeloda after only taking it for ten days - and it dropped my tumour markers in that time! But my liver enzymes also rose rapidly. I am on taxol - weekly treatments, 3 on and a week off. Just completed number four. Totally manageable so far and have not yet lost any hair (using cold cap but body hair/eyelashes etc remains intact so far). Moment of truth will be next week when I have a scan to see if it is working. I am quite scared as the tumour markers went up a bit after two treatments. But I gather this can happen. I was terribly reluctant to try this treatment but I must say it has been fine. And I hope if you decide to go this route, it will be for you too. I will look up those other drugs you have been offered but I think my options are limited cos of these raised enzymes. Thinking of you and sending all best wishes. I am sure others here will have more useful info x
Thanks so much for getting back to me. Your comments around taxol have been very helpful. My main worry is not feeling well & especially hair loss & looking like I have cancer.
I’m gutted that just as lockdown is easing & I’ve booked a couple of holidays I’m facing all this! My life feels crap at the moment!
Oh I know - I feared the same. But have a look at posts from Bangor Belle who has been on weekly taxol a long time. She has encouraged me! I still worry about my hair - because not many people know about my health - but I am using the cold cap and keeping fingers crossed. I also booked a holiday at Christmas and was worrying I'd be too ill to go but honestly right now - post session four - I feel better than I have felt previously at times. People have been telling me how well I look, in fact. (Ha! I say inwardly). I've read a lot of your posts and have always felt inspired by you. You hang in there now xx
I’m sorry to hear about your progression, I too was just told about liver mets. My doctor really didn’t give me a choice between treatments he told me taxotere to be aggressive with the liver mets. I start in a few hours. I so afraid but if side effects and like you hair loss, don’t want to look sick. I had a beautiful summer for kids planned but things have changed. I hope you make the right decision. Bless you
I was on taxotere and didn’t lose enough hair to need a wig! I was also able to take a 4 day vacation to VA—it was at a bad time in my cycle so I had to rest more than I would have chosen, but I had a great time! So I hope it’s relatively easy for you too.
I am sorry to hear this Jo , just as lockdown is easing and we are all desperate to travel ...albeit a staycation ! Maybe you could bring forward a break before you start on any new treatment? I can’t give advice on these drugs , but which did your onc say she would recommend out of these, based on previous experience? Maybe there is someone on here who has experience of the options available to you , as it’s not an easy decision to make yourself . Sending love , stay strong ! x
Hi. Understand your fear. I did Taxol for six months. Kept my hair with the cold cap and also the frozen mitts for feet and hands which are important to ward off neuropathy. Anyway, it was ok and it worked as it shrunk my tumors in my sternum so that they could then do radiation. I think you will find it tolerable. Bring a buddy to chat with. Good luck. x
JoI’ve started Taxol and had my third one today (3 weeks on then 1 week off).. like you I was scared and really thought of not doing it
However because I’m doing the lower dose more frequently the side effects are tolerable (she does talk of upping dose in a few months-though)
I get a bit more tired but did ride my horse yesterday which pleased me as I want to do ‘normal’ stuff...had people help me tack up but I did it...and no nausea!!! and appetite much better
I think you should try Taxol...I’m afraid I know nothing about the other two drugs so can’t compare them or comment
Was so glad to read that you managed to get out for a ride Barb and be as ‘normal’ as can be ... the weather has helped too ... I even managed to get some colour ! Just booked a lodge break mid May to try and have a holiday whilst we can ... even if it’s a staycation a couple of hours away ! Husband and I have both now had our two Covid jabs , so wanting to have a change of scenery , tho’ will still be cautious !I hope you continue to tolerate Taxol and can stay on it for a good while . Take care! x
So glad you are giving it a go. I am sure you will be delighted with the results. I am on week 19 of 24. Looking forward to goingon to an inhibitor for a break as i have chemo every week. Glad you got to ride Bugsy. Well done sun is out so maybe my treatwill be dinner on our balcony. Once again well done I know you dreaded Taxol. Xx
Sorry I don't know the name of the hills but the view is over towards Carrickfergus. If I had pointed the camera in the opposite direction you can see whitehead and even Scotland x
How lucky you are to see the sea every day with a view like that! Does that make you peaceful? My lake view, though not spectacular like yours, helps to calm me down I think seeing water makes a connecting with the inner parts of us. As you know, we are all mostly water.
Hello JoI’m sorry to hear about your progression, I too was told 3 weeks ago about my liver mets progressing... so options for me are
*chemo with either pills (capecitabine) or weekly IV taxol.
*A clinical trial with the study drug, Faslodex (pills instead of injections) and the everolimus pills.
*The use of Apelisib (Piqray)
My oncologist recommended the clinical trial, I am a little overwhelmed and not sure which direction to go.
As you, I feel really scared about the chemo and wanted to keep it as “the last option”.
I am still waiting for the results of the genetic tests of the tumor biopsy (done in 2019) to see if it could help choosing a line of treatment.
I have been feeling like I am going through a “diagnosis” again. Anyway, let’s hope the next line of treatment will work!
Good luck to you.
Helen
Hi Jo I am so sorry to hear you are feeling so blue. You have had a difficult time over lockdown and your normally sunny positivity is in hiding. Sorry I have no experience of any of the treatments available to you, but I know once your mind absorbs it all, you will feel confident in your choice and will hopefully see quick evidence of its success. It’s nice to know there are still choices available. Please enjoy Easter and find Sunnydrinking againClare x
Sandra, I checked this morning on the status of the oral Taxol drug. Apparently the mfg is having to conduct another safety and efficacy trial because of some slight issue with their "final phase." Would that trial be something Jo could consider? Would the oral drug have the same SE's?
And, what is a vesicant and an irritant? I have never heard those terms. Thank you, thank you for your wisdom. Andi
Jo, I'm so sorry. I am currently on Xeloda due to liver mets. My onc suggested Verzenio and Faslodex, but I requested the Xeloda so that I might qualify for a CDK2 inhibitor trial after progression. I know the choice in front of you is difficult. I hope you come to a decision with which you are comfortable and have tremendous success. Much love, Andi
Hi I am also taking taxol infusions should be 3 weeks on 1 off because of bloods seems to be going 2 weeks on 1 off .... was put on like you liver mets have had one scan so far after 12 weeks showed 50% shrinkage so was very happy with that .... choose not to do the cold cap I’ve done it before found it very hard to tolerate made me feel dreadful and just thought this time I don’t need to endure anything extra , tho my hair had always been extremely important to me ex hairdresser I have got a very expensive wig been worth every penny I still have a lot a friends and family who have no idea in-fact a friend what does know said to me last week “ you bought that expensive wig and you’ve not needed it” smiled to my self and kept quite, I’m here in the UK have booked a couple of stay cations they just said they would work around it , good luck with your journey whatever you choose but would just like to say I’ve found it quite able to tolerate it ... during lockdown it’s been my day out xxxxx
Hi Jo ! I have been on the IV a paclitaxel since January 2021 so far side effects have been minimal . I have infusions once a week for two weeks & 1 week off . The infusions do however take time . The first week infusions because of the other 2 meds infusions takes 270 minutes ( according to my medical orders)
The next week i get paclitaxel only it takes 220 minutes . This includes blood work and port flushes . It can be a long day.
I was on Ibrance and fulvestrant previous to this change and I must say I feel better on the IV a treatment . I had a scan in feb and it was showing shrinkage of the liver Mets after only 4 infusions .
If you have any questions let me know . The unknown is always so scary. I was there . As for making the decision as to which treatment to take ? I went with what the oncologist recommended as being the best to attack those liver Mets and let me continue to have a life .
Thank you, Sandra! I thought the CLR was just a "hey, you need to clear up this glitch" rather than an "I don't think so!" I missed the part about prior chemo. I was hoping I would be a candidate, but I guess neither Jo nor I will be able to apply. Frustrating stuff.
The vesicant/irritant information was very interesting. About a year after I had my port removed, a large squamous cell carcinoma appeared at the site. I was told there was no connection. I never believed it.
I hope you are well, and as always, I am eternally grateful you so graciously share your wisdom with us! Much love, Andi
I am so sorry, Jo. Even though I shouldn't have, my first oncologist started me on chemo. My second oncologist stopped that at my 4th AC treatment, and prior to my first oncologist's intention to move me to Taxol next. (That first oncologist also intended for me to have my breast removed.)
I really don't have any information/insight for you about your options. Still a newbie over here. But, given that I have already been through chemo (granted, for only two months -- bi-weekly), I am less frightened about the prospect that it might be needed later. Already have my port ready to go (and in use for Zometa and sometimes blood draws and CT tracer injections), and I know that I will not hesitate to enter into chemo if/when the time comes that it is the best option. That said, I personally would want to exhaust other less toxic options first, if they exist.
Chiming in to lend support! Even though we never met, I am thinking of you.
I understand your disappointment and fear. I had been taking Xeloda for 10 months and with continued liver progression, have elected to pursue the Y90 liver radiation. I had the mapping portion of the treatment today. I expect to start the actual radiation process in about two weeks. It has risks, but is done on an outpatient basis. I feel okay after the mapping but will be better able to share when I undergo the actual procedure. It might be an option that you can talk to an interventional radiologist about to see if you are a candidate. Wishing you success with whatever your next line of treatment may be. Liver mets are a challenge for many. I'm hoping new options will be available soon.
Dearest Jo,You are in my heart and prayers! I have no experience with any of the meds you mention but pray that you find the one that works to keep you stable for years to come!!
May you have a blessed Easter and find your answer in the week ahead. God bless you and shine His healing light on you!
Hi Jo (I'm new here!) sorry to hear your having to stop medication. I was diagnosed in October with Breast cancer and with stage 4 in nov apparently my liver was riddled with tumours-my oncologist didn't know how it was still functioning. She started me 2 days later on paclitaxol, I had it every week for 14 weeks. I also cold capped every session and although I lost some hair (minor thinning as I'm lucky I have thick hair) you wouldn't know I was having chemo, my eyelashes did start to fall out week 11 though. If you are having it weekly I would consider getting a picc line or similar as the veins in my left hand have collapsed after having weekly IV's put in. The reason for stopping paclitaxol is my oncologist has decided its done the job in shrinking the muours to a size where they are now 'stable' and can be managed with tablets.
I wish you every look with the paclitaxol and I would definitely try cold capping. It doesn't work for everyone but it did for me and I was so glad I did it. X
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Good news from my first post treatment scan.
Progression in liver 
Mixed response to treatment , not the results I was expecting from Paclitaxel,perjeta & herceptin.
CT Scan with New Liver spots😪, next treatment? (Ibrance & Letrozole 18 mths 1st line)
