The tamoxifen and afinitor I was on for two months has done nothing. I had my CT scan six weeks early on Tuesday, read it on my portal on Wednesday and today met with my onco.
She said the last option is Xeloda (capche.....(generic name). I told 8 pills, 4 twice a day for one week and then one week off. I was told possible hand and foot, major diarrhea, (I have enough oxys to take care of that) that I would probably get jaundice and my toe nails and fingers nails may turn black.
I already lost two months with that tamoxifen and afinitor (20 mg.) All three of the tumors increased (60 days this time) and a new one is forming.
So she is prescribing me the above. I am confused, bewildered and have no family or friends that would understand this. She said I decide I do not want to continue with the treatment I would maybe 4-6 months left (excluding the two months I just wasted).
DOES ANYBODY WITH METS TO THE LIVER WHERE AFINITOR STOPPED WORKING, have good results.
I sent her this once when I got home, bc I did forget to ask her. So I see her in three weeks, it will take a week for me to get that drug, then a week off so this week may be the best week ever.
I live alone. She said I would be feeling more and more fatigued at home and may more than likely lapse into a coma. I live totally alone.
Oh anyway, this was her response. I APPRECIATE, BUT I AM NOT looking for false hope. I really want to know what medication you were on that your onco put you on the afinitor and did the Xeloda do anything. This was her response
I still have to place some place to pick up my body. Does it happen like this. Any factual information with good reactions to xeloda for mets to the liver I would appreciate. If didn't work for you, I would appreciate that also.
It’s always hard to make estimates of life expectancy because there are many unpredictable factors. It would be logical to subtract the two months from the estimate since the tamoxifen and Afinitor didn’t seem to be helping. However, your liver function looked near normal today, so I think we can err on the side of longer time. I would probably estimate 4-6 months from now, if the capecitabine is ineffective. Of course, there could be a complication at any time – no one can predict the future, but I’m hoping for the best.
Hope this is helpful,
Associate Director
Division of Hematology/Oncology
Written by
kearnan
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I was on Xeloda (Capecitabine) for liver mets and it worked for seven months. I had no side effects, very good treatment! But there are many another medicaments and trials going on. And local treatments. Did you get a liver biopsy? It would tell if your cancer changed characteristics. Best whishes
No, but I had two tumors that increased significantly and another one was now found on Tuesday. If I thought I could get 7 more months, I would probably do it, but I am afraid of feeling so sick on this new med and it doesn't work, so then I would have less time to feel normal.
She said you may even want to stop it bc of the side effects. I did though ask her how much time she can estimate that I have left. She told me 4-6 months but subtract the two months that I was on Tamoxifen and Afinitor.
I am not even really sure what causes death in the women that have stage iv breast cancer. I need to know that I have time. I am going to have to go to hospice bc I have no family so no point in having at home hospice. Plus, I live in a rented apt., that is too small.
I am already dreading what lies ahead. I don't even know if I should try it. The side effects sound awful but I guess this is the price one has to pay for a few more months.
If I were you I’d strongly consider taking Xeloda. I had a few side effects with Ribociclib, such as tiredness, headache, constipation and diarrhea. Xeloda was perfect for me, I only had a slight rise in liver enzymes in the first two months. You can try and if side effects are severe you can just switch to another treatment.
May I ask how many mg. you were on. She did say all oncos may prescribe differently. She wants me to take 8 pills a day, each at 300 mg. Week on and then a week off, etc.
Thank you. It gave me a little hope. I was thinking of just stopping treatment all together. Since she stopped the treatment I was on a week ago, I am not on any heavy duty meds and I forgot how good that feels.
So the idea of going on another drug with side effects (I always seem to get them) was depressing.
Today I am supposed to start this med bc it was just delivered yesterday. I am sitting here upset and crying bc of the side effects I am reading. She prescribed for me to take 8 pills a day and each pill is 500 mg. (I thought it was 300 mg., but no). I am supposed to take four in am and four in pm. One week on and one week off.
I am sitting here at 11:00 am and have not eaten (I never eat in the am) and I am extremely stressed and wondering if I really have it in me to go through these kind of side effects especially bc I live alone, do not drive and no friends where I live if I need help.
I am debating whether I should just stop treatment at this point. I am in my fifth year and it is now in my liver. I can't bring myself to take the pills.
She said the dosage was based on my weight and height. Yes, I am listed as obese. I just do not know if I can do this again. I am just tired and scared.
I think that the first days are the hardest moments, but please keep the faith and start! As I told you I found this treatment very good and didn’t have side effects. Relax and think positive 🤗
I live alone too and my family are all in another country. I have read your other posts and I hope that you are able to try and be positive because being so negative and thinking about the future and your fate is just bringing you down. Many of us have been on meds that were not working and yes, our tm's went up or we have/had new spots here and there. I am on capecitabine, which is the generic brand of xeloda. Many of us have no side effects, with this medication. Again it is different for all of us. We all have ups and downs. The person who wrote back to you stated that your blood work for your liver was good, that is a positive thing, be happy. You won't know if it will work if you do not try it, if that does not work, then there are many, yes- many other options. Surely there are groups that you can join, not just online, but in person to be with others that are in the same position as yourself. You could help someone and they could help you. Sending you loads of positive energy and lots of hugs. Be strong - Blessings
I was diagnosed with bone mets 10 years after the original breast cancer diagnosis. I was on Ibrance for around 10 months and then switched to fulvestrant on progession to liver. It didn't work, and I have been on capecitabine now for 4 months. I have had some side effects (mainly tiredness) but they have been manageable. Waiting to hear about results from latest scan. If this isn't working I expect to got on taxol but haven't yet had that full conversation with the consultant. So there are other options after capecitabine to consider.
I hope you will get good scan results. I was used to having stable for so long that now it is the opposite hearing it did not work, and it is continuing to spread.
May I ask how you were prescribed it? She is going to have me on it for one week and off for one week?
Damn...for the past few weeks, even on the new treatment plan of tamoxifen and afinitor, I did experience nausea but no naps, and I can still do my laundry, clean, etc.
I will say a prayer and please share if you can feel able to how it goes.
Just realized you said you have been on it for four months. Why wasn't a scan done after three months. I live in NYC and they do scans every three months but she said I will be coming in for bloodwork every two weeks. Because if she can see from the bloodwork, that this new med is not working, then I do not want to waste what time I have left feeling crappy.
I am currently on Capecitabine for two weeks on and one week off. My dose has been reduced since I had the max dosage at the start and found that a bit too much. I have not had any problems with nausea or diarrhea, just tiredness really. I have found minimal problems with hand/foot syndrome - just keep hands and feet well moisturised.. Normally they do scans every three months but on this occasion my scan was delayed as I had a holiday booked and did not to miss it. I have a blood test every three weeks the day before my 3 weekly appointment with the consultant. It is worth giving capecitabine a try. I am told many ladies do very well on that. Just hoping I will be one of them!
My consultant will not give any indication about survival time. He says there are so many factors involved that at present it is impossible to know. The signs of jaundice etc listed by your doctor are if you have advanced liver cancer. Given your liver results seem pretty near normal, you should be pleased as that seems a long way away from the scenario she has painted. The suggestions made on this thread about getting a second opinion and having a robust plan are good. You need to get beyond this phase of mental paralysis in order to feel better. Good luck.
She said it appears that my liver was functioning normally, but I believe I have three tumors that grew bigger and a new one formed. I also listened to a video of a cancer surgeon from John Hopkins, who said he has seen people with their liver being 100% cancer and yet their liver still functioned, yet they pass from something called Swamp Gas so I am not feeling optimistic that the fact that my liver is still functioning is really good news.
You are right. Mentally, I am close to broken. This week, not being on any heavy duty meds, while waiting for the new one to arrive has been wonderful and I just do not know if I want to waste what time I have left on feeling like crap again. But you are right....Mentally, I need to break out of this mode of thinking.
Have you received a second opinion? What about liver radiation? Are you her2 low? They just approved enhertu. Could you do a liquid biopsy or testing to find mutations? That could open up a targeted therapy. Clinical trials?
I feel if your liver functions are close to normal you have time for other meds to work!!
I haven’t done xeloda yet but I’ve read many reports of it working well!!
Please don’t give up and don’t listen to her gloomy time line.
Thank you. I need that to boost my confidence a little. I came home and was a mess and I am dealing with all this since day one by myself.
I sent her an email after I got home that I had a friend whose sister worked in a cancer hospital in another state and that she has going to have her sister call me and that I may make the decision to go for a second opinion. (BY THE WAY, THAT WAS ALL A TOTAL LIE...I JUST WANTED HER TO GET A BIT UNNERVED BY THAT STATEMENT.) (My bad LOL)
I immediately got an email response from her that she could set up a phone consult with me to discuss other varying options.
Funny, how quickly she responded. (I do not know anybody that has a sister that works in a cancer hospital. )
People here have been recommending that you get a second opinion. At one point you were considering Sinai.
I know other people here think that telling your oncologist you want a second opinion is a threat. I do not find that to be true. All sites recommend getting a second opinion with mbc. My oncologist encouraged it. She wanted to know what another expert would say, if she had any different ideas. You don't need to make up a fictional consult. Just call Sloan or Sinai and do it. If nothing else, it might give you more confidence in your oncologist, and you get an explanation in different words.
I feel (and it may just be my anger) that I had been on Verzenio (50 mg. twice per day) plus falsodex injections worked for three and a half years and I felt normal on it, was not tired, etc.
Then in February, my CT scan showed it was in my liver, a completely new distant organ. She did not change me from the verzenio and falsodex injections and then at my next CT scan in June, it showed that the tumors grew SIGNIFICANTLY (the radiologist report) and THEN she changed my treatment plan.
She changed it to tamoxifen (20 mg.) and afinitor (5 mg.). I was on it for two months and from my bloodwork, it appeared it was not working. So I said to her, I do not want to waste time taking this if my cancer is spreading.
So I had a CT scan last week (6 weeks early) and it showed that the cancer was spreading in my liver so she told me to stop that and now I will be on Xeloda. So I am not sure that my liver functioning means that much bc I heard a doctor on youtube from John Hopkins say that he has seen patients with their liver being 100% cancer and yet it still functioned but they died from swamp gas (I just stopped reading at that point.) So I do not feel at all optimistic that since my liver is functioning, that that is a good sign.
I’m so sorry you are dealing with this alone. If you ever need to vent or chat feel free to message me!! That’s good you got her attention but I would definitely seek a second opinion.
There really are a lot of options out there.. and with close to normal liver enzymes you have time to figure things out.
Are you able to take long walks or meditate or do yoga? All will boost your mood while you are figuring things out!
I can still walk and clean and do my laundry and such. I am getting myself stressed out beyond belief about trying hard to arrange for a pickup of my own body and how to arrange the removal of stuff from my rented coop apt. i am trying to throw out as much as I can but I am just overwhelmed.
But I remember watching the video (not sure if I mentioned to you already, lately I tend to repeat myself) of a cancer surgeon from John Hopkins who said he has seen women with their livers filled with cancer and their liver was still functioning, but the cause of their death (for SOME of them) was something called swamp gas. So I feel the fact that my liver is working properly doesn't make it any better.
This is what I’d do-1. Start xeloda and see how you feel. If you feel awful ask to reduce dosage.
2. Call and make an apt for a second opinion.
3. Don’t google cancer in liver. It’s just putting your body into that “fight or flight” state and it’s not helping your situation.
4. Maybe do a little of the cleaning and preparing that you need to do. Maybe a little each day. But don’t make your whole day abt that. Go for a walk. Tell yourself xeloda will work. And in meantime you’re not preparing for death, you are preparing for this next fight. Take care of your body and mind. Write a list of things to do each day. (Including your second opinion). Maybe research all treatment options and see which ones you haven’t done. Is radiation or surgery an option?
Don’t know if that helps (at all) but I always feel better when I have a plan of attack.
Thank you for that message. Now, while I am off the heavy duty drugs, I am trying to throw out everything I can. Because I expect to feel crappy again, when I start the med. I was battling with myself whether or not I want to continue.
I did ask her for an approximate timeline since I have no family and have many decisions to make. 4-6 months does not sound long. It was hard in the beginning, but now I am throwing out photos, cards, etc. But I appreciate your message but I am getting into a bad state. Thank you.
Xeloda was very manageable for me. Had some hand foot but I used a 20% urea cream called udderly smooth and that really helped. It did shrink my liver tumors initially but unfortunately did not work for long. Your liver is a big organ and if it’s functioning is normal, that’s a good thing. There are other treatments beyond Xeloda - other chemos are available too.
I don’t know what treatments you’ve been on already but I would get a second opinion. Most oncologists don’t give estimates on how much time you have left - everyone’s body is different and you may do better than someone else on any particular treatment. My oncologist has someone who has been on xeloda for three years. What do you have to lose?
Please don’t let her get you down and get a second opinion if you can.
I am waiting for it to come from the speciality pharmacy, but she basically told me that if this does not work, then I have about 4-6 months to live regardless of the fact that my liver is functioning normally.
I watched a video the other day about a cancer surgeon from John Hopkins and he said he has seen women where their liver is basically filled with cancer and it was functioning fine, but that they did from something called swamp gas (I stopped it there).
She is said I may get jaundice (yellow eyes) and she also said that my toenails and fingernails may turn black.
What exactly is hand/foot syndrome?
Also, she is going to have me take 8 pills per day (twice a day 4 pills each time) and have me do it one week on, one week off. She said although others onco may prescribe differently, she has seen it work better this way. At this point, I no longer really trust her.
If I may only have 4-6 months left if this drug does not work, I would hate to waste the little time I have taking some medication that is going to make me feel like crap.
I emailed her yesterday saying just to let you know, I am thinking of getting a second opinion. She immediately emailed me say she could set up a phone consult with me to talk about other options as that is not my only option.
But her prior email told me I had 4-6 months if this medication does not work so she jumped from one extreme to the other.
I do not even know what do anymore. I would hate to waste time on a med that is going to make me feel like crap, and then the cancer is still spreading anyway I would rather have 3-4 months of feeling normal.
But it is scary to realize how quickly a month can go.
I would take the seven months at this point unless it affected my quality of life. Then it does not make sense. I have no husband, kids, siblings or family to worry about. I remember reading when first diagnosed, that the average length of time was five years and I am thinking well this is my fifth year.
This is what happened to my nail and it was only that finger. For hand foot, I had peeling in my palms and feet and had to lotion them a couple of times a day and wear thick socks to prevent blisters. They also had some dark spots.
I’ve done two clinical trials - you have to go in more often for blood tests and EKGs but that’s about it. It gives you access to drugs that you would not currently be able to. If you are in NYC I highly recommend going to MSK and Sinai to get another opinion. These hospitals both have trials and going to both if you’re able may allow you to access different ones.
Your doctor should not feel threatened by a second opinion. All of our treatments are trial and error at this point. They just don’t know and another doctor brings a new perspective that they should welcome. That’s my opinion anyway.
I specifically had asked her how much time bc I have to try and make my own plans for pickup of my body, direct cremation, who is going to call SS, and other places to know that I am deceased and that bills will not be paid, etc.
My palliative care doctor, who works in the same center as my onco (I call her my pain doctor bc she is one that prescribes me the strong pain meds) told me that possibly my onco would have to refer me to another medical center or hospital that may be doing trials for new drugs. She said she is not sure, but that is what she suspects.
Has anyone ever done clinical testing for a new drug? I do not think Maimonides is affiliated with that, thus having to be sent to another hospital to get it. I am just getting tired and confused by this all. Thank you for replying.
You mean you don't go to the website for clinical trials for mbc? That is posted here fairly often. Yes, I have been in a trial. It was amazing. Others here have posted about their positive experiences with trials, and a few people are posting about promising trials coming up. If no one at Maimonides is involved in research, you might have to go somewhere else to participate. Not a big deal. You are in NYC. Sinai and MSK have trials all the time. There is one that is supposed to start this fall at MSK that you might qualify for. Another good reason to go for a second opinion.
That is what my palliative care doctor (I have been with her for two years when the pain from my spine was unbearable.) So at the cancer center I go to, they encourage people to use the palliative care system (in the same cancer center) BEFORE they are close to passing. I like her very much. She was in hospice for 10 years before moving over to Maimonides as a palliative care doctor.
She was the one who mentioned that Maimonides, where I go, does not participate so that I may have to be transferred to another hospital to get into a clinical trial. She said she thought that was what my onco was probably going to say.
I am busy trying to figure out how I can plan my own pickup after I die, and getting stuff out of my rented coop apartment and that in itself is stressful. Some people offered in the beginning, but then backed out and I get it. So I am trying to arrange that myself which is hard enough.
I feel like a broken record. Go to Sinai or Sloan for a second opinion. If they have a clinical trial that would be good for you, it is not a big deal to go there for the trial. A second opinion is not the same as going to a new hospital; it is just a consult. What happens after that, if there is a trial for you, will be arranged by the docs.
Also, I do not have a husband, kids, sibling, parents. I am making those arrangements. Seems like there is never time, especially emptying overstuffed apartment, but the important things, like finding a funeral home, are hard to get myself to do but not that hard in terms of time. I have cousins, but they are worried about having to do any of that, so I have to do the clearing and arrangements. You are not the only one in that situation. It is not something I want to share. I just want to take care of what I need to do.
I actually had signed up with Columbia for body donation. They would have picked me up and, if acceptable, and it would cost nothing. After I did all that paperwork, had it notarized, etc. I got the federal express package from them that they had everything on file that they needed, but to make alternate plans, in case the body was declined.
I do not know what I was thinking bc I read the requirements so many times but it went right over my head. They do not accept obese people and medically I am obese. Plus, they do not take anybody who dies from an infection and my onco told me there is a good chance I could die from an infection.
I think bc I lose 30 pounds since January that I was no longer obese, but nope according to my patient portal I am so my body would be declined.
I am looking into direct cremation. It is the cheapest way (about $1,300) but nobody gets your ashes or such. It is hard to do bc I do know what hospice I will wind up in. And I doubt that a funeral parlor say in Brooklyn would want to drive all the way to the bronx (if I am put in that hospice which I am told to expect) for a direct cremation. I would think it would not be worth their time bc of the cost.
I took Anastrozole first after a dual mastectomy,I was given no chemo until 2 yrs later when my bc had metastasized to my liver and bones😩I have taken Ibrance,Zeloda and am currently taking Verzenio and Tamoxifen.I had no side effects other than neuropathy and complete body hair loss from the chemo infusions,hand and foot from Ibrance & Zeloda,and diarrhea the first month with Verzenio/Tamoxifen. Suddenly I am having severe hair loss and don't know what is causing it .My scans are remaining stable other than tiny specs the radiologist is noting .My oncologist seems to not be alarmed ....
Seems like it's toss the dice and see what comes up🤔
I had been on 2 50 mg. of Verzenio daily and falsodex injections monthly. That lasted me three years and I felt normal. I had bad side effects from the 150 and the 100 mg. of Verzenio. Told my onco, nope I want the lowest dose. She was annoyed and it continued to work and then in February it spread to my liver. I was then put on tamoxifen and everolimus. Two months and a CT scan showed it was spreading faster.
Now she wants to me me on Xeloda 8 pills (300 mg. ( per day twice a day breaking it into four pills and one week on and one week off. I am already sickened by the side effects I read out. She said with no treatment i will have 4-6 months left and if these Xeloda doesn't work that to deduct those months from my living span.
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Trial; second opinion
Update: Xeloda vs Taxol
Watching Chuck get his new hat in tiaras and our Royal Robes…(well bath robes) Did you watch too?
Afinitor/Everolimus and Tamoxifen is next :(
My recent scan has shown progression in the liver!
