I know we all fear running out of options and having to go to chemo. That is how my oncologist presented it to me when I was first diagnosed with mbc. The hair loss, the nausea, the extended infusions. On the other hand, from everything I have read, it is most effective.
There is a woman in my building, older, who was diagnosed around the same time and has the same oncologist. None of the oral meds or fulvestrant worked for her. Either she had intolerable side effects or, mostly, they were ineffective. She started chemo about a year ago. It was hard at first, but now she is NED and feeling great. She is on a low maintenance dose of chemo, very light, and really back to her old life.
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TammyCross
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One of my favorite bloggers now on Facebook under, Breast Cancer? But Doctor……I Hate Pink, was on Chemo for 12 years. She stopped Chemo treatment earlier this year and is still doing well. My oncologist told me chemo is the next step in my journey when the time comes. Thanks to Ann, also known as But Doctor I hate pink, I have a lot less fear about a chemo future. Glad your neighbor is back to her old life.
I posted that, but even though I can see how well this neighbor is doing, I am still scared of reaching that point. Good to hear another success story.
Thanks for this post. I am also facing chemo. I had decided it was not for me at 82 yrs old but I may just try it. I feel good except for my hip tumour which effects my gate.
Why not give it a try? This woman is also in her eighties. Warning, though. It was hard at first, when they tried something strong to zap it. That worked, and now she is on something easier.
Hi Tammy. What chemo is your neighbor on. I just got four infusions of abraxane and I am desperate. I vomit all the time despite premeds and antinausia meds. Sorry to spoil peoples hopes. My quality of life is very poor.
I don't know what she is on. I will try to find out. I will have to ask her daughter, but we talk only when we run into each other. I do know that the original chemo she started on was rough. Not vomiting, though -- we all respond so differently to the same meds. She was depleted and they had to force her to take little walks down the block. She just wanted to stay in bed. Because it worked so well, though, she is now on something else, very light. Wish I could ask our oncologist, whom I see on Tuesday, but I don't think that is something she could tell me.
Perhaps a better course is to ask your oncologist if there is something else they can give you. Maybe you have done that. I don't much like my oncologist, but she is responsive in that way, switching around until she finds something I tolerate better.
abraxane is one of 3 taxanes...others are Taxol and Taxotere (I may have misspelled that) and maybe one of them would be easier on you. Do let your onc know how miserable you are!
Yes, Cureforever, PJB is right! Changing to similar meds in same class can make ALL the difference in tolerability. What happens to someone else is not informative. We all respond differently, and tolerate different meds.
I had six cycles of Docetaxel (Taxotere) in the autumn (2021), it was definitely hard but was tolerable, usually the first week of each cycle I was wiped out, but the following two weeks were ok. I did have problems with my nails coming away, though
Thanks Tammy, that makes me feel better as I feel I am also moving towards IV chemo, although have just started Capecitabine/Xeloda and hope to get good results from that for a stretch. Lots of ladies on here seem to feel better than they expected on IV chemo with great results, but, in common with many of you, I too dread it. It seems like the right one, if you can find it, works wonders. Always nice to hear about someone doing well on it.
Yep, here too. On xeloda, hope it works because IV is next. Had iv chemo in 2016 for 12 weeks. Hoping that these days the iv chemo is easier and we won't lose our hair a second time. That was a huge thing for me. If need be, then I guess that is what i have to put up with to live.
I think it is usually better than we think it will be- I admit I tend to catastrophise a bit these days! Hopefully Cape/Xeloda will do good things for us for a long time yet.
Hi Jackie, indeed. I just hope that it works and works for a long stretch. Changing drugs on a near yearly basis stinks. Stage 3 in 2016. Anastrozle 2017 to 2019 Dec. 1.5 years and that Dec I lite up like a Christmas Tree, stage 4. Put on ibrance and fasoldex. Small postive response on ibrance and fasol, then more spots on spine in Dec 2021. So, hoping xeloda zaps the C silly. After 3 cycle markers were double, as people have stated here, it could happen and then drastically fall. Finished 4 cycle and on week off of meds. See doc on Sep 12. Since blood work was ok, I am doing 2 cycles without visit or bloodwork. On the 12th, we will see what the bw shows. Then scan on the 15th, and will have to wait a week or so for results. I will see them prior to my next appt with doc after 6th cycle and then 2 more to go. It is an eight cycle treatment so I hope it shows promise and perhaps only a maintenance dose thereafter. Blessings ..Paula
I will be sending you love and luck for a good result in September. The nurse who did my pre-treatment session said they had saw some fantastic results from patients on Xeloda.🤞
Thanks for the positive energy. Yeah, I have heard that too. Again some people react differently and it helps or not. I read a comment somewhere here, that stated you needed a specific enzyme to work with the xeloda. I do not remember being tested, do you?
I had a test for something called something like dpv(?) which if you don’t have normal levels of in your liver can affect your ability to process it and cause stomach problems, etc. I don’t think this test always gets done though. I was lucky, my levels were normal. (Nice to be normal at something!!)
No stomach issues but I still have pain in column and I would think athat after 4 cycles of xeloda, there would be less. Ugh..Office called to schedule another ct scan in sept and another gamma, just had them 3 months prior. I guess the markers on the 12 of sept will show yea or nea if it is working. Blessings
Hi folks. Just a quick (well maybe not so quick…sorry!) update in reply to Tammy and this thread. After 3.5 years on Ibrance and Letrozole, 13 months in a successful trial with one of the oral SERDs (Amcenestrant) and a few months on Xeloda/cape, my wife has moved on to IV chemo.
She is on a version of the infamous “red devil” Doxil, which for decades has been used at full strength to “go for the cure” in earlier stage BC patients. That version is very toxic so patients can only tolerate five or six treatments due to possible cardiac toxicity (not to mention other brutal side effects, etc) BUT the version she is on, doxil liposomal, encapsulates the toxic component in fat globules that greatly reduces the toxicity, plus it is given at much lower dosage than the original “red devil”. So the good news here is that it does not seem to have a max lifetime treatment limit and hopefully can be given “indefinitely” according to her onc and her specialty pharmacist at Dana Farber. Apparently, in addition to decades of history with BC/MBC patients, this type of treatment has also been used, in conjunction with other meds, for AIDS patients. Bottom line: the medical community has a long history and lots of data, with this drug, so it is pretty well understood.
Sorry for the long post and layman’s explanation (with apologies for any errors) but I know the transition to IV chemo was scary for us, as it probably is for many others. So far, she is tolerating the first two infusions quite well and she has her scans and third monthly infusion later this week. Some low grade nausea (usually a week or two after the infusion) and some fatigue, but nothing worse than she experienced on any of her earlier meds. Now we just need to find out if it’s working! Will provide an update when we know more, but I hope this provides another perspective on the switch to IV chemo.
With bilateral breast cancer, hormone positive in left breast, HER 2 in right breast with twelve lymph nodes involved, given the choice of chemo or radiation, I chose chemo. I was so much more wary of the permanent side effects of radiation than I was of chemo. Many chemotherapies and targeted therapies, later, the HER2 was eradicated and none has come back! The hormone positive cancer in the left breast re-occurred and was ablated. Then,, MBC was diagnosed in the liver, again from the hormone positive The point of my shaggy dog story is that the chemo was terrible when I was going through it but I came out the other side, free of the dreaded HER2 and free of the scorched skin that so many have from radiation. I came out older and wiser but with no after-effects to speak of. Please hear me when I say that the chemo was so very effective and despite having HER2, chemo stopped it in its' tracks. This is one person's experience with chemo. others may have not been as lucky.
Just to add to Tammy‘s post, I was put on IV chemo as my 2nd line of treatment for MBC. When I was first diagnosed in June 2020, I was put on Ibrance and Faslodex, ER+, HER2 -, mets in liver, sternum and some lymph nodes. I had progression after about nine months. So, last year my oncologist gave me three choices: piqray with tamoxifen, Xeloda or IV chemo with immunotherapy. I asked her which one she would recommend. Without hesitation she said I really want to knock back the cancer so I recommend doing the IV chemo with the immunotherapy. July 2021, I started with my second line of treatment, that being IV chemo and immunotherapy. It’s been a year now and all my scans look great! My oncologist hasn’t said this to me, but in her notes that she writes on Mychart, she has put “patient in remission.” Praise be to God!! I was on IV chemo for only four months, I stopped right before Thanksgiving. I am currently still on the immunotherapy and I go for treatment every six weeks. The Lord has blessed me with manageable side effects and my quality of life is really good! I was so scared of doing IV chemo as I have never experienced it ever in my life. When I was originally diagnosed with BC I was stage 1 -had a lumpectomy, radiation and put on a maintenance drug of Arimidex. This is just my experience, and I know other people have not had such a good experience.
So sorry for the late response, I was out of town and took a cancer “break”.
The chemo I was on was Abraxane. I was on that for 4 months, which consisted of 6 cycles, 12 infusions, and the immunotherapy is Keytruda. I am only on the Keytruda now.
Thank you very much for your reply. This means you have a pik3 mutation given that one of your choices was a piqray … also it seems that you have have tested positive for pd l 1 to get keytruda. I suppose this was established through one of those liquid biopsy tests. Best wishes!
Yes, I have the PIK3 mutation, and yes I’m positive for PD-L1. I also have a high TMB (tumor mutational burden). This was all found out by a biopsy of my actual liver tumor, not through a liquid biopsy. A portion of my liver tumor was sent out to a company called Tempus. It took about 3 to 4 weeks to get the results -extremely informative. Blessings to you!
What is tumor mutational burden? I have a low cancer burden, but not the same. Is mutational burden the number of mutations you already have? I have none of the common mutations, but I seem to develop resistance fairly quickly, and wonder if that is also a mutation issue.
Sorry to hear that you develop resistance so quickly…. have you asked your oncologist if that could be a mutation issue? But yes, you’re right. I also have a low cancer burden, but I have a high tumor mutational burden, meaning my liver tumor that they biopsied had many many mutations in it. It’s in the 90th percentile. I never asked if that was a good or bad thing. My oncologist says that having a high TMB is usually not the norm for breast cancer. My hubby then spoke up and said “Liz has never been normal!” 🤣
Yes, asked her and asked my second opinion doc, and got a liquid biopsy. It is not that, apparently. They also don't think I am developing resistance so quickly. I just want more time on each treatment.
Yes, I know what you mean! My first line of treatment of Ibrance/ Faslodex only lasted 9 months. When I had progression, I felt like I was sucker punched in the gut. I had always thought that I would get at least 3 years on Ibrance….boy was I wrong! I think that’s why my oncologist decided to do IV chemo. When I told her that I never thought that I would be on IV chemo for my second line, she mentioned that I had only got 9 months on Ibrance and the norm is 2 to 3 years, so let’s knock this cancer back.
Interesting. And that really worked for you, didn't it?
I did get just about 2 years on Ibrance + Faslodex. The day I started on Ibrance, a nurse practitioner in the office told me that other patients in the practice had already been on it for 5 years, 7 years. When I learned that I was "average," I took it very hard. I just assumed I would be exceptional. Does that mean my life span will be five years post diagnosis? Will I be average in everything?
I got a year on an experimental SERD It seemed so short, but apparently that is very good for that class of meds. Someone else here got 13 months on another oral SERD.
Since I was told from the beginning, and again a few months ago when the experimental treatment failed, that there are just three options before chemo, I seem to be marching through them too quickly. I don't have any mutations that would open up other possibilities -- except for maybe Her2 Low, that new category with a new treatment. Just hoping for something new will come along, to delay my progression to chemo. As I posted in another thread, though, and as you found, chemo can be a good thing, effective and not too onerous.
The five-year average lifespan for a MBC patient is so outdated! That data was collected before all these new drugs that have come out in the past 5 to 7 years and a lot of those patients were so sick that they couldn’t get the cancer under control. I really feel that you Will surpass the so called “average” of five years! Your original cancer was controlled for such a long time before it went metastatic, that’s a huge plus. And, you had some great runs on your first and second lines of treatment. I’m hoping that the treatment you are on now has manageable side effects and that you will be on it for a very very long time! Blessings to you!
I wouldn't say my original cancer was controlled. It just wasn't doing anything detectable and we weren't doing anything about it for 11 years. Oncologist said from the beginning that, given the long period between original cancer and mbc, they don't know if the original cancer just escaped and took a long time to grow, or whether it was new, just something I am susceptible to. I am not sure that makes sense, but neither does it seem right to say it was controlled -- which suggests we were doing something to keep it under control.
I heard that from the nurse practitioner when my oncologist abruptly said, "You want to know your life expectancy? Five years." NP said that average was based on very sick people who joined phase 1 clinical trials. Still, as I read studies that boast of extending survival, it is just 48 months, for a good one, 13 months for another. If you add them together, five or six years! Why don't they come up with a new average? Isn't that data they could collect?
Nobody knows, (not even a doctor), when someone will pass on. I’m sorry that your oncologist said that to you. And Yes, it would be nice if they could come up with a new average….
So happy to read that you received good scan results and Verzenio is working for you! Hoping that the SE become more manageable -Blessings to you!
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