First, thank you to all those who sent advice to me after my CT scan showed no progression. I received the results of my PET scan a few days ago and it shows a large progression in my sternum and it has spread to my rib. The other various cells around my body are still there too.
My oncologist has taken me off Ibrance and has offered me two options.
18 weekly sessions of Taxol followed by cycles of Xeloda. She said it's just palative at this point. I'm ok with accepting the inevitable, although I haven't given up living.
There are still so many things I need to do, such as go to Austin to see my new granddaughter and visit my son. So, I have decided not to take the Taxol at this time.
Has anyone been on the weekly Taxol? Can you function? Same with the Xeloda. The oncologist gave me a whole bunch of common side effects, which all sound pretty bad.
I would like to live as long as possible, but I don't want to spend my time being housebound and sick.
Any help would be so much appreciated. Thank you.
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Carolhelen
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I am entering my 4 th round of weekly taxol. This means I have had 9 treatments and going into 4 th month. I find taxol to be better tolerated than Ibrance ever was.. yes I’m a bit tired all the time but Nothing I’m stopping from doing anything in the course of the day. So I’m good with this. I did get my onco to stop the steroids after first round and I am personally feeling better without it. I take ubiqunol twice daily. Look up Sloan Kettering site and herbal suppliants fir suggestions and studies. On all supplements. Theanine, Vit d , melatonin, etc
Thanks so much for that. The info the oncologist gave me sounded pretty scary. I still work, so being able to function is a plus. Has it kept your cancer at bay? Do you take it 2 weeks on and one off? I'll go look at the supplements now. I really appreciated your reply. Prayers and good health to you
I have been on a three week on and one week off for the past 3 months now beginning my fourth month today. My dosage was 10% lower but I was surprised to see y ANC did not come up much. Actually, it went down but now that I think of it, the nuprogen shot was wearing off which would be a reaction after the surge. So maybe next week will be fine numbers and I can continue with taxol. Tell me where you are being treated. I must say that t he first three months have been very beneficial to my body and killing much of the cancer--my scans last week were good. I am also on the same protocol that they want you on--maybe you started already.
Hi Carolhelen -
I'm so sorry for what you're going through....so incredibly stressful!
I'll mention that I did Taxol "back in the day" (11 years ago) after my initial dx. It was, relatively speaking, easy. I had done Adriemycin (sp?) and something that begins with a "C" for three months and then they set up the Taxol for the subsequent three months. The sequencing, from what I understood, was because the Taxol was easier than the others...Which I found to be true, e.g. better energy, etc.
From what I've experienced and learned in this community, life can be led pretty well while on Taxol. So perhaps you can do both...Do the treatment *and* see your grandson and son, in between (or delay/skip treatment occasionally, if warranted?).
I'll admit that there is something psychologically about being hooked up to an IV pole that is discouraging, but it sounds like your doc is being very proactive, aggressively beating things back sooner rather than later?
Thanks, Lynn. Yes, there is always an option of delaying or taking a break. I hadn't even thought of that. I'm going to enjoy the summer, do what I need to do and take it from there. I think I'll leave the IV for later and go with Xeloda, just because it's more convenient at the moment. Wishing you health and blessings.
Hi Lynn, I was on an experimental trial in 1994 with AC (adriamycin and cytoxin) and the next level layered on Taxol. (I was on the standard treatment without taxol). It’s clearly a long tested strategy.
Funny, I did not realize the trial was in 1994. My beginning cancer journey began in 1998 and yes, that was the protocol along with the 5.5 weeks of radiation following a bilateral mastectomy with a tram. I am glad that they found 1/2 dose taxol could be given more often and just as effective, etc.
I'm very sorry to hear this. I was on Taxol. The worst for me was just feeling tired all the time. Do what you want and need to do, just take time to rest. Praying for more time!
FYI, taxol for me, has been a breeze compared to oral Ibrance. yes, it takes a few hours a week but, I can function normally and that is worth everything. Sure, Im not as energetic as I used to be--but then most people are not, sooo! Most women find the low dose taxol is very tolerable. Where are you being treated?
I’ve been on Ibrance and Letrosole for only 2 years and so far scans have been stable. Next is at end of this month. I’m so sorry you’ve had progression. It comes to all of us at some point. Hope the taxol allows you to continue working a d to see your family. Sending you all best wishes and big hugs. Take care. 🙏🏻❤️
Thank you Red1246. I was a bit disappointed that the Ibrance had stopped working and sad there is progression. Hopefully the next lot will slow that down. Funnily enough (not funny at all) the reality of the scans has made me a bit calmer and more accepting. Kind of peaceful in a way. Weird! Anyway, thank you for your reply. Blessings to you.
I love it that it’s given you a peaceful feeling. One cannot ask for more. Will be thinking of you and hope you’ll check in once you’re on new treatment and let us know how you’re doing. I’m so hoping the meds will slow progression too! 🙏🏻
I was quite upset when my oncologist found Ibrance had stopped working and I had progression. I am still in there, trying to find the next thing, and angry and sorry, but I understand and have felt the peace that comes with acceptance. I had that once, but don't now.
I was surprised my oncologist didn't mention Taxol, since I have seen here that it has worked well for some people. I am more surprised that your oncologist has not suggested other alternatives to attempt to stop or even reverse progression. -- But then, I don't know what other treatments you have had or what parameters your oncologist is considering. Have you had a second opinion?
The three alternatives my oncologist offered were chemo (last resort), Verzenio and something else, and a clinical trial of a high dose of oral fulvestrant, which I am trying. Fatigue is the main side effect with this, as well.
Could you please tell me about your oral fulvestrant trial? I only have a week to find an oral trial or I will have to face the injection....which I will likely refuse. Thanks in advance!!
I gave someone else the details in a post under "Treatment after Ibrance."She has to go into a trial, but I don't understand why you would refuse the injections. When I started treatment 2 years ago, I couldn't walk from my bed to the bathroom down the hall because the huge tumor in my chest (which so MANY doctors missed, despite my begging for a test) took my breath away. I had to stop and pant, hang onto a chair after walking 10 feet. Within 3 days of the Fulvestrant injections in my hip, I suddenly realized I walking up hill without gasping, running home. It was like a miracle. Five minutes discomfort isn't worth that?
I never heard of oral Fulvestrant. I haven’t been bothered by the Fulvestrant injections. Why are you rejecting them? FYI, oral tends to be more expensive since insurance distinguishes between oral and dr administered.
I haven't rejected them. They've stopped the Ibtance and Fulvestrant because I have progression. The iral chemo I'm going to be taking can't be given with any hormone blockers so we'll see what happens. Wishing you well
Ha! I think I dont have the reply skill down yet! Ari’s gram is afraid of needles. I’m not fond of them, but the Piqray plus Fulvestrant and Xgeva injections Seem to be doing the trick. I’m waiting for blood tests now…. May have a scan ordered today.
Tammy Cross. I've had many treatments so far. I had stage 3 in 2013 and have had everything available since then, so these are my last two options. Unless they bring something out in the near future, which would be awesome.
I have found peace and I hope I continue to feel it. The only time it really hits me is when I see my sons cry. Then my heart is broken and I wish it would all go away. Sending peace, prayers and blessings your way.
Me too blms. I want to know every detail so I can deal with it and move forward. The not knowing is what drums up all sorts of scenarios in my head at 3AM
I cannot add much except that during taxol treatments I wore an ice cap, ice booties and ice mitts. As a result, I kept my hair and warded off neuropathy in hands and feet. I feel it was worth doing. Good luck.
Thank you Kdiet. I'm going for Xeloda but when I start Taxol eventually, I'm going to ask about the mittens and booties. I wonder if we have them in the UK. I know we have the ice caps but that's great if they had those too. Thanks for the info. I appreciate it. Blessings to your and yours.
I found taxol tolerable during my first diagnosis. It just made me very fatigued but very manageable. I wish you well in your decision.
Sorry to hear your news of progression, especially since you are only just used to the news of the initial diagnosis. I don’t have any advice I am afraid, but I do know other ladies on here have done well on other treatments after Ibrance. The important thing is that you are happy about your decision. I wish you all the best and lovely times with your Grandson.Clare
Thank you so much BellaE. I have decided on Xeloda. I don't have any regrets making that choice and I think it will allow me a little more freedom right now. The progression was a wake up to call to get out there and start living, which was a good thing. I hope you are enjoying your day. Blessings to you.
Greetings Sister, and yessssss warrior Grandma Continue to do your research so that you can make the best medical decision(s) going forward. Can you think about getting a second opinion. I believe you will get to see, and love on your new grand baby soon. I pray GOD will provide the perfect treatment to beat back, beat away the disease that has no right to your body. Amen Sister/warrior/Grandma🙏😇🙏😇
Thank you so much RLN-overcomer. That meant the world to me. Having this break from treatment has given me a new lease on life and I'm going to live each minute. I'm going to start Xeloda on Tuesday and then I'm going to book those tickets to Austin for a thousand cuddles. Blessings to you my sister warrior!
Taxol was horrible. I have no experience with Xeloda. I was also taken off of Ibrance and put on Piqray which has horrible side effects. I was in the hospital ER on Friday with red wells from head to toe and swollen lips. Carol. read this link. It is very interesting!
I’m starting this protocol after I have bloodwork next Tuesday so I’ll have a baseline. He has a website with 24,000 people who are using it. No one has side effects on it. And lots and lots of people who were told they have 3 months to live and are now cancer free. Basically cancer is a metabolic disease. And current SOC treats it only as a genetic disease. Joe Tippins was told he had 3 months to live and his vet told him about this drug that treats cancer as a metabolic disease. He was in a clinical trail with M D Anderson in Houston. TX. After a few months he was cancer free. He asked Dr Anderson how the others. were doing on the trial and he said you are the only one that is doing well. That’s when he told him he had been taking this drug, Fenbendazole. Anderson laughed and said I thought you were up to something. That drug was used for cancers in the 70s and 80s. We always knew it was good for treating cancer but we couldn’t get it approved because it was too cheap and they couldn’t make money off it. Makes me want to throw up! You can combine this with what your oncologist prescribes. Everyone I’ve heard from have had no negative side effects on it.
Did you have genomic testing? I have a mutation and am now on Piqray and Fulvestrant after Ibrance failed (3.5 years) and exemestane and everolimus failed (6 mo). So far all indicators are good.
No I haven't. That would be awesome, but I don't think it's available on the NHS. I have the usual genes tested and entered the gene program for research though. They've taken me off Fulvestrant as it can't be used with this chemo, but other than a sore butt, it was good. Much better than exemestane and letrozole, for me anyway. I start Xeloda on Tuesday, so we'll see how that goes. Good luck with your journey. Blessings to you and yours.
Btw, Piqray can have terrible side ffects, but not necessarily. I’m fatigued and have very dry skin, but no rashes, and occasional bowel distress (can’t like that!) and after 6 months my hair is thinning again after recovering from Ibrance through another treatment that didn’t work at all. The worst part is the price! Nevertheless, my CA27.29 marker is now in the normal range at 30 from a high of 120, AND it has reduced a lesion on my eye, which was unexpected! So, it’s good to have an open mind.
Hi Carol I have completed 12 treatments of Paclitaxel ( taxol ) I finished May 6 2021. I was doing treatment , 2 weeks in a row . I was also having pertuzumab & trastuzumab every three weeks , and will continue with them until ...... they quit working .
Aside from the hair loss , eye brows & lashes gone and some fatigue I found the taxol manageable and well tolerated . I feel better than when taking ibrance . But we are all so different and other medical conditions can play a huge part . My fatigue near the end of treatment is slowly getting better I am 6 weeks since last taxol treatment .
If you have any questions ask away .
A question for you , did they say how the progression was missed on the CT scan ?
Hi Thatflowerlady. No they didn't really say why they missed it, only that it didn't show up on the CT scan and the bone scan. The PET picked up the cancer in my rib and the spread in my sternum. Also have two new spots by my oesophagus. It's all a bit worrying when the scans miss something so important. Still, I'm happy it was caught in the end. I had chemo in 2013/2014 and just found the whole being hooked up so real to having cancer, if you know what I mean. so, I'm going to start Xeloda on Tuesday and will save the Taxol for a final choice. I'm feeling so much better now I'm off Ibrance and wish it would last a bit longer, but I'll enjoy the next few drug free days. Blessing and prayers for you and hope your hair grows back luscious! Have you tried the magnetic eyelashes. They are awesome.
Enjoy your weeks off treatment . I find it concerning that your new spots were not caught on your CT scan as that appears to be the standard of care for so many of us . I have been metastatic for over 5 years and have never had a Pet scan .
Like you I felt so much better after I was off the ibrance , I was on it 22 months but I think my expectations were so much higher for it and how I would feel .
I understand the IV a making it seem real , I believe it does for others in our lives as well . Seeing a bald head screams “ yes I Have cancer , it is back !” Add a face mask and I am sure you can imagine . Lol
I hope the Xeloda works really well for you with minimal side effect and is effective .
I did buy some magnetic eyelashes but need to thin them out a bit they are a little too heavy for me . My eyebrows are starting to come back thank goodness I dislike drawing them on . And I can’t wait to colour this mousy brown hair . I have never had luscious hair but just hair would be nice .
I hope you have a great visit with your son and grand daughter .
Hi Luann. I start Xeloda on Tuesday. I'm ready to take it on after having this break, which has been heavenly.
The PET scan is really the only thing that has caught things for me over the past year. Slightly worrying, but at least they caught it in the end. Maybe the CT can't get through my fat tummy!
Good luck with trimming those eyelashes and I wish you health and happiness. Carol
You will be fine on Xeloda, I’m starting round 7 tomorrow and it has been kicking my cancer’s behind and not mine. It’s not as horrible and scary as it sounded from the side effects Google search. My feet and hands are peeling a bit and I have some nausea periodically but I haven’t had any other intestinal issues. I keep telling my husband that I’m not through yet and he’s stuck with me. 🙏❤️ and Palliative is not hospice so party on!
Thank you Iwasborntodothis. That's comforting to know. I had such bad side effects with Ibrance, I'm thinking this will be a breeze compared to that. Blessings to you and your husband and thank for you reply ❤️
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