I am a nervous wreck. I am into my fifth year. Unfortunately, after a 3 and 1/2 years with 50 mg. of verzenio and falsodex injections, my cancer spread to my liver in February.
My onco kept me on the same line of treatment and then come June, the tumors doubled in size. I have one that is 11.1 cm, one that is 7.1 and one that is 5.1.
She then put me on tamoxifen (20 mg.) and afinitor. I was on that for two months and it appeared from the bloodwork, she did not seem to think it was working.
I told her I did not want to waste another month if the cancer was spreading so she agreed to a CT scan six weeks before I was scheduled to have one. Unfortunately, it was not working.
So then she gave me Xeloda at 8 pills, each 500 mg. Four in the am (after eating) and four in the pm (after eating). I asked her why so high and she said it was based on my height and weight (yes, I am medically obese).
It was hard for me to eat early bc for the past year or so, I eat like one meal a day and I never eat in the morning.
I forced myself to eat a bowl of cereal and took four of the pills. Within one hour, I was in bed. It brought back memories of the Ibrance five years ago. I could not move. I had no energy. I laid in bed crying, thinking I can't go back to this place.
Then when I was able to get up, I had severe muscle pains in both my arms and legs that lasted for another hour. I never took the second dose bc I thought I cannot handle this.
After the past few years, even though occasionally tired, I was able to take care of myself, clean my apt., go food shopping and this med just knocked me out.
She told me that if this does not work or if I chose not to take it, I will have about 4-6 months left. I am beyond stressed and scared. I know some women have no issue with this drug. I know she is going to be annoyed.
I do not know what to do. I cannot feel like that. No reason to live if I am going to be so sick from this medication. I live alone and have no family so I need to be able to feel at least 1/2 decent.
I see her tomorrow. I almost feel like she is done with me. She hates when I say I read that on this forum board.
I guess I just need someone to tell me if they took a much lower dose. I have not been sleeping, been so stressed out and not sure if it is my time to stop treatment then. I want to enjoy what time I have left and yet, on the other hand, I do not feel ready to die. Any practical advice or is that what happens? Some women just decide okay no more bc of side effects. Thanks. The stress and fear is unbearable. My onco told me I would wind up in hospital and then from there sent to a hospice center. I cannot do it at home bc I am a renter and I have nobody so I would have to go to hospice.
Sorry for the very very long post, but I am so frazzled by this and scared. Thanks!
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kearnan
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I have no idea how to comfort you but your post breaks my heart. You have virtual friends here. I know it’s not the same thing as having real life touchable friends but at least on here, you can vent with people who may be experiencing the same thoughts and feelings that you are feeling. You can’t get that from real life touchable friends anyway. Please don’t give up! I know it’s so hard dealing with side effects but if you stick it out, those side effects may decrease or disappear altogether. That’s what happened to me when I first took verzenio, I was so nauseated to the point that I stayed in my chair all day but eventually the side effects were minimal and the one side effect that for me was the worst, nausea, disappeared almost completely. There must be some kind of caretaker institution that you qualify for. Have you looked around, online, or in your area? Something that allows you to continue to be independent but with supportive help locally. Please ask your oncology team, or make phone calls to govt agencies.
I am not much of a drug taker, hated to be medicated but I’ve learned not to be so stubborn on the subject of anti-depressants as sometimes that’s the only way I can get through the day. If you haven’t looked into that, please do so as sometimes we need them to make it through one more day. One day at a time. Hugs to you!
The very young, but sweet social worker, had called me and said she could get me meals on wheels (UGH...I volunteered one Thanksgiving and the foot was pitiful (like hospital food). I basically eat one thing a day now (and am still overweight, how cruel is that
I could get an aide but I live in a small coop studio apt. So there is no privacy then. My kitchen is so so small (but I have always HATED cooking and have like two pots) and I doubt two people could be in there at once.
I have lived on my own (never a roommate) since I was 19 and now I am 62. I would be so so stressed out having a stranger in my small apt. And for now, I can take a shower, clean a bit, do my laundry. It would kill me to need an aide and I doubt they would like the small quarters either.
No anti-depressants. I am already on fentanyl pain patches, 20 mg. of oxycodone (get 240 a month), 3 mg. of xanax (which I had been on for so many years before it was even a controlled substance that they told me I have to stay on it now (withdrawal specialists), gabapentin, Bisacodyl tablets, prescribed stool softener, an inhaler, etc. No more meds for sure. Thanks for responding though.
(I had to update it since I meant to type I HATE cooking.)
I'm so sorry to hear! Have you had your liver mets biopsied? When my cancer moved to my liver, after biopsy, we found it had mutated to a different type. I had tried Verzenio, Faslodex and Affinitor previously prior to a new biopsy without success but now we know it's because my cancer had changed. I'm now back on infusions and everything is getting back under control now that I'm on the right treatment.
Quality of life is important. And second opinions are always okay. Sending love to you whatever decide.
My palliative care doctor in the same cancer center (and who I like 1000x more than my onco) said that at this point, they have to run many tests and that is only to see if I could even qualify for the clinical testing. My cancer center does not run trials. She said it could be months.
hi. Me again. If I was still in NYC I would come to Brooklyn and drag you to MSK for a second opinion. Sadly I now live in California (or maybe lucky for you as you won’t have a stranger at your door)
Please get a second opinion.
Please get a biopsy as the cancer indeed may have morphed.
Please ask to get the test to see if you are genetically unable to tolerate Xeloda.
And please ask for a dose reduction.
I am on 2 500 mg tablets twice a day and don’t have too many side effects. And it’s working so far
I also think you should look into places to find Community. A church maybe? Not just for the faith, but because it’s a way to meet people and get involved with something outside yourself. Episcopalians don’t care if you believe or not (I know because I am one) but they do community well. Or take a class in something you’re curious about ? Or even just go to a museum or a lecture? Anything to get you out of your own head
I don’t know you, but feel like you’re giving up prematurely. And I know what I’m saying has been said by others here.
You and your doctor clearly don’t see eye to eye. News flash—she works for YOU. So fire her.
I know it’s exhausting and scary, but think in terms of possibilities. maybe you will find a tolerable drug. Maybe there is human connection out there. Treat yourself the way you would treat someone else. With gentle kindness and respect. But don’t be too nice kick yourself in the pants sometimes too 😅
One more question. Did your cancer spread to your live. (It was in my lungs, then progressed to my spine and as of February of this year, to my liver. I now have 3 tumors 5.1cm, 7.1cm, and a 11.1 cm. I seen a picture where they showed like a small lemonade and that was to demonstrate the size of a tumor. I thought OMG. I three higher number tumors, they must be so large.
The test is to see if an advanced cancer patient has a DPD deficiency. If so, they would serious side effects, 10x worse than the average person. I was going to bring that up to her (and check to see if Medicare/Medicaid even pays for that) and found that test is $37,000.
I asked her once how if they could tell they were breast cancer cells and nothing something else. She said the ct clearly shows that they are breast cancer cells.
I am starting to pack up stuff. Donate clothes I still have price tags on (LOL), and other clothings that is in excellent condition and throw out clothes I will never fit into again and are not donatable. Sometimes it breaks me bc it is not like I am moving but that I am preparing for my death so that for my friend, there will not be a mess.
I feel for you so much, and send you virtual, gentle hugs. I'm sorry I can't help with any questions about Xeloda but I definitely think you should try to keep going with it, on a self-approved lower dose if that is all you can tolerate?
Also I don't think on the scan they would be able to tell what type of bc cells they are, and it is very possible that it has mutated, mine changed from ER+ HER2+ when primary, to ER- HER2+. They found out by doing a liver biopsy on one of the tumours in my liver.
So I really recommend you ask about a liver biopsy. Is that what you mean ehen you say a test costing $37,000?
I wish you strength and courage, I am sorry you are in so much pain and eish I could help more. Sending love from across the pond!
I am going to bring this message to my appt. with my onco today. She never suggested a biopsy and I never thought to ask her to do one.
No, the $37,000 test would be to check to see if I have a DPD deficiency which would mean that I would feel and suffer the side effects much more. Many places (at least in the US) do not cancel and I am sure insurance will gawk at paying that much money.
But I read that European countries are recommending that cancer patients should be tested for a DPD deficiency before prescribing Xeloda to any cancer patients.
I read one case of a woman who was prescribed Xeloda and had suffered from the side effects almost immediately. She was put in the hospital bc of the severe diarrhea and severe hand and foot syndrome and was severely dehydrated.
They tested her and found she did indeed have a DPD deficiency which means her dosage should have been much much lower.
They then stopped her from taking the medication in the hospital, but even when off, for another month, she suffered the same effects and died after being on it for one month. (THIS IS NOT THE NORM). But European doctors are saying this should be done first.
But in US, I could see why bc insurance companies will not be willing to pay $37,000 for that test. At this point, I will see what she says, but I am not optimistic. But thank you so much. At least here, people understand. The few friends that keep in touch say, they would the same thing. Point is, in the past, I would have probably stated that UNTIL it is in your face.
But I appreciate your gracious response. If it is 100% that that is all she can offer or the other options will be even worse, then I am done. At that time I will remove myself from this board bc it is to support and encourage women so then I will find a board for people like me that have decided to stop treatment. I do not want to bring gloom and doom to my experience to this board.
Please don't worry about doom and gloom, you have friends here.
See what she says about a biopsy!
If you decide to persevere with Xeloda I hope you find a tolerable dose. That deficiency thing I'd never heard of... seems a ridiculous price for a test!!
Good luck with everything and never worry about sharing your real feelings.
It was not a good meeting. She had me meet with the physician assistant first, Yan. He is a moron. I remember when I was first diagnosed and put on 125 mg. of Ibrance. I had never felt that kind of chemo fatigue. It was three weeks on and a week off. No warning from my onco. My week off (as I have stated here previously) was scary and I was in bed the whole time. When I went for my next appt. I told the pa about how sick I was and how freezing I was in August in NY during my week off.
He basically gave me this condescending look and told me that "he never heard of anybody feeling bad on their week off." I had no idea how to respond to that bc I did not make it up.
So here we are four years later and he comes in first. I said before I even tell you about what happened when I took the first dose of 4 500 mg. pills, DO NOT tell me that it could not be so. I then reminded him of my very first time with him.
I am just angry now all the time. This medication scares me. The more I read, the more scared I get. And I am not referring to this forum board, I am referring to medical articles and such. It seems awful. I do not want to take it but the other options seem worse. Piqray and something called Enshu or whatever. I know if I tell her I am not taking it, then that will be it.
I actually had diarrhea (lightly but still) two days after taking that first dose. I am just all over the place as indicated by my long posts.
Could the drug be Enhertu? If so, it's a miracle drug--there was a standing ovation for it when it was introduced at a medical conference. Please give it a try--it did wonders for all of my cancer sites, my CA 15-3 dropped like a rock, plus I had no bad side-effects for 8-9 months. Unfortunately, I developed 'ground glass opacities' in both lungs and had to stop taking it. That's not common though and it worked far, far better than anything else has. If I can ever go back on it, I'll do so in a New York minute! Good luck.
I confirm that in Europe, at least in Italy, the test is done. I did it and was negative. But positivity is uncommon that’s why maybe in the US it’s not considered.
It looks like your oncologist is heartless and rude at the same time,like instead of supporting you and provide you with normal answers to your questions she just loads you with negative vibes. I’m not a doctor but there should be something that will ease your side effects and as Pbsoup said please don’t give up! ❤️❤️❤️
She now gets annoyed with me. I think we are both sick of each other. I mean right off the bat, she gives me the highest dose. Even after the Ibrance fiasco (and I had no idea I could ask for a lower dose and she did not even give me that option.) I was stupid then and just did what the doctor told me.
Then with Verzenio, she put me at 150 mgs. I stopped two weeks into it after having accidents while just walking so I stopped taking it. She then lowered it to 100 mg., again same bowel issues so I stopped taking it. I said to her, what is the point of being on a medication that I have to worry about losing control of my bowels. She then gave me the 50 mgs. and said well this is the lowest dose and she was annoyed.
I never told her but I never took two of the 50 mgs. By then I decided to a certain degree make my own decisions so I only took one of the 50 mgs. and I was on that, along with falsodex injections, for about 3 and 1/2 years.
I think she just goes by some guidebook. I said to the PA (before she came in) she had prescribed me 125 of ibrance in the beginning. I never knew there were lower doses so when I had those issues, she just took me off it. I said I have read that many ladies got a lower dose of Ibrance and it worked for them for several years. I said if not for this board, I would not have known that.
Well, its already 11:30 am and I have not taken it yet bc I cannot force myself to eat. I am just sick and tired of feeling sick and tired. She is calling me on the 21st.
It sounds stupid, but for me, the biggest challenge is eating before taking them. I am down to eating one meal a day. Sometimes I think I feel hungry and will make say pastina with butter. And then I take two tablespoons and I feel full.
It is getting to be too much. I think I would feel different if it did not require eating first. and also the 12 hours between doses.
I know how hard all this can be. But I truly believe you must get a second opinion and fast! I’m pretty sure NYU or MSK or even Presbyterian takes your insurance. You are entitled to a second opinion. I did! My markers were up and I was terrified to start Xeloda. I was a crazy nervous wreck and confused so that made me get a second opinion. And I’m glad. I’m treated at StonyBrook but had a second opinion at MSK and was told that they would be treating me the same as my oncologist. I was on Ibrance and Letrozole for 3 1/2 years along with Xgeva & then Ibrance stopped working. Went on Verzenio with Faslodex & Xgeva (no Letrozole) but it didn’t work. By the end of May this year, I was put on Xeloda with no Faslodex just Xgeva. My markers went down dramatically which is great news but I realize that I’m never out of the woods, so to speak. The side effects are fatigue and/or constipation or diarrhea. So I take Metamucil. Yes, I have metastatic breast cancer in my bones and I have a small spot on my liver but I have faith in my oncologist.
I think if you found an oncologist you have faith in, your spirits will be in a better place. Being alone is hard but look into support groups and use the tools that are available through your own insurance and support groups to get yourself in a better frame of mind. I belong to Strength for Life here on Long Island-fantastic group and they provide so many things for us cancer patients and survivors-all for free!
I wish you only they best but PLEASE try to find another Oncologist!❤️
I had such severe side effects almost after I took my first dose of 4 500 mg. pills in the am after eating (which is head bc I rarely have an appetite anymore and eat maybe one meal per day.) I did not take the second dose. Today would have been my first day off (week on, week off).
May I ask what dose you were on. I need to be able to walk and use my hands bc I need to do my own shopping, clean my apt. , do my laundry. My studio is very small and has no privacy and it would be very stressful for me to have a stranger in my apt. bc it is so small.
I think the breast cancer in my liver is more advanced than yours with three large tumors and they are growing fast. One is 5.1 cm, one is 7.1 cm and the other one is 11.1 cm.
I do not know at this point, bc of how advanced, what another onco can do. MSK will not take medicare and my NYC medicaid. They do take medicaid patients, but it has to be from an extra advantage plan. I have NYC medicaid and the NYC location does not take it. I have tried.
The reason I stayed so long with that Medical Center is because of my palliative care doctor who prescribes my pain meds and we have a great relationship. That made me stay much longer than I had planned to.
Thank you for your kind reply. It is nice to be able to vent and not be criticized or judged bc you all know the ups and downs of this. I think I broke after my experience with Xeloda and realizing the meds are just going to be so much harsher.
Thank you for your kind reply. I will see what she says today (but it was supposed to based on seeing how my body reacted to the medication.)
Kearnan, you keep saying MSK doesn't take Medicare. Not true. You said you would try Mt. Sinai, also excellent. I got a second opinion at MSK with Medicare and paid not a penny. We have been advising this for months. Don't understand your resistance. The only challenge was getting all my records to MSK, but it turned out to be really easy.
They take Medicare but Medicare is very limited in what it pays. Because I joined a pool trust spenddown, I also have NYC Medicaid. So whatever Medicare does not pay for NYC Medicaid does. NYC Medicaid also pays the monthly fees to Medicare so it is not taken out of my SSDI. I think it is like $170 for Medicare and $40 for the rx plan. NYC Medicaid pays that for me.
Sloan Kettering in NYC does not accept NYC Medicaid. They accept people who have medicare, along with a supplemental insurance (Fidelis), but they do not accept the NYC Medicaid so that would mean that I would be responsible for everything Medicare does not pay, I would have to pay deductibles and co-pays, etc and that would involve alot of money which I do not have. Medicare hardly pays for anything which is why so many people need to purchase an additional medical plan along with it. I am going to google and see if there are oncos that deal with stage iv specifically. I just feel (maybe wrongly) that at the advanced position I am in, other onco would not want me as a patient.
Curious. When you got your second opinion, did they have other options for you or did they just agree with what your onco was doing? If you do not mind answering, what made you want to get a second opinion? I am getting myself more and more stressed about this. The best thing about this board is that the few people that have stayed around do not get it, they do not understand. I had one friend completely stop talking to me once I found it was in my liver. Then things started to get real for me. I was frightened, angry, etc. She was calling me like 3-4 times a week. I then started just being angry all the time.
I then asked her to please give me some space bc I was so angry and I did not want to direct any anger towards her bc she had been so good to me. I said I just need some time to regroup.
She said okay, but then two days later, she said I got used to talking to 3-4 times a week and I got my hair done and I want to tell you what happened at work the other day. And I was furious. And I sent her a really angry email that you are not getting it. I do not care about your haircut or what happend at work. I am trying to adjust to the fact that death seems closer now and you can't even give me the space I asked. This is what I did not want to happen.
Needless to say, that was the last time we ever spoke. I did send her an apology stating this is the very thing I did not want to happen, why couldn't you give me some space but she never responded.
Quite frankly, I think she was right.
Oh, I also read that it worked in 20% of women with stage iv. They did some kind of test. I told my onco that the test shows that with xeloda that 89.7% of women lived five years and without that drug or treatment, that 83.7% women lived for five years so it did not seem like it was that much of a difference to me. I may have over-researched this drug and now I am just scared of it.
People and the experts at conferences all said to get a 2nd opinion from diagnosis on. I waited until my second treatment failed. My Columbia oncologist encouraged my getting a second opinion at MSK. She thought they might have a clinical trial for me. They didn't.
The MSK oncologist said she might have one a different 3rd line treatment first, and then the one I am on, but she said I will get there eventually. So basically no change, but it was good to have it confirmed and to have a different doc. explaining things.
I mentioned to my palliative care doctor (Dr. E) about clinical trials. First, my cancer center does not have that have clinical trials, so they would have to send me to a hospital that does participate in clinical trials.
But Dr. E (who I adore, compared to my onco and they are two floors apart) said that I would have to go through (1) get referred by then, and (2) a series of tests first and even then I may not be accepted. (So in a polite way, for me, it would kind of be a waste of time.) But in a nicer way than my onco would have told me.
I am not sure what you are replying to, if you are replying to me at all, because I just wrote about 2nd opinions. I have been in a clinical trial at Columbia, which gave me a year without side effects, and the MSK doc I saw last spring considered me for one that I do not qualify for, but you would. One great thing about trials is that everything is paid for. The testing is not onerous. You might not need testing if you have everything in your medical records. They do like to repeat some tests with their own labs. It is not a big deal. It sounds like you haven't had that many tests, and this would be a way to get them done for nothing.
Waiting for your reply telling me why this is not possible for you. I mean, expecting it, not waiting.
Sorry, I am so stressed my mind is all over the place. I had asked my palliative care doctor about clinical trials. She said (I go to Maimonides Cancer Center, I was diagnosed at Maimonides BREAST Cancer Center and Maimonides also has a hospital. They are several blocks apart. They also have another location a physical therapy and a surgeon center.
She told me that Maimonides does not have clinical trials. That Maimonides would have to refer me to a clinical trial and that they would be running various tests and they may even decide that I would not be viable for a clinical trial. So I got the message that Dr. Egan (my palliative care doctor) is kind of telling me it would be a waste of my time.
I am confused bc I see other women have mets to the liver. I am wondering though if compared to me, the cancer in my liver is much worse. I now have three tumors, one 5.1 cm, one 7.1 and another one is 11.1 and they all doubled quickly from February when first found.
The fact that Tamoxifen and afinitor did not work shows to me I think it is far more advanced than others. My onco (the witch, which is not nice I know) said I should subtract the two months I was on those two meds bc they did not work so it was like taking nothing for my cancer since the CT scan showed progression.
I do not want to waste time feeling sick and then finding out the cancer is spreading anyway. I seriously have to start cleaning out stuff, and donating stuff and getting read for the last part.
My onco's other two options was Piqray and falsodex and something Enhru (some kind of infusion thing.) It is not like if I am feeling sick, I can even ask someone to get me a drink of water. I have to be able to do things myself.
So I am confused if the size and number of my tumors is more advanced than most on here that have it in their liver.
This is the email I got from my onco previously (of course the two did not work and the cancer progressed in my liver (I just do not want to waste time I have left trying out new meds bc then it is just taking the time I have left and wasting it) My greatest disappointment is that I will have to go into hospice bc I have nobody to stay with me (and no room). This is my fifth year. The below was from my onco. My palliative care doctor told me she has seen patients stop treatment and live for almost a year (but I do not think she liked the reply from my onco so not sure if she was trying to make me feel better. She sent me the below email two weeks ago so not very encouraging LOL
I am not willing to go through the hand/foot syndrome and the other side effects for a few months. It will just be harder for me to do anything. What quality of life will I have if I have major fatigue and am in bed. I am starting to throw photos out and such items. It is getting easier.
"Subject: RE: Anne Marie Kearns; 01/10/1960
Dear Ms. Kearns,
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.
I was right! You would reply saying why you cannot do a clinical trial. You haven't even tried to get in one. If you got a second opinion, as you have been advised many, many, many times by people on this board, they might have a trial for you. - You say you cannot go to MSK for a 2nd opinion because a friend told you they don't take Medicaid as supplemental. How about calling MSK yourself and seeing what they can do for you? How about Mt. Sinai? And Columbia? NYU? If any one of those has a trial you qualify for, you can jump ship and you won't need a referral. (MSK has a trial starting this fall that I did not qualify for but you might.) People here look up clinical trials to find ones they qualify for. That is a lot of work and maybe you are not up to it, but it is a possibility. Someone gave a site recently where you can find trials. I didn't find that helpful, but I was not looking for one now. If you are looking now, you can filter by distance, conditions, best match.
Then you say you can't do a clinical trial because you have to have tests to get in. That is your reasoning? I don't get it. They can look at your old tests, might re-run some. You complain that you haven't had enough tests. Well, this is your chance to get them. The great thing about a clinical trial is that everything is free. It doesn't go on your insurance.
Then you might not qualify after all, given test results. So? What do you have to lose?
Then you post the letter from your oncologist yet again. Third time? And tell us the size of your liver tumors again. And complain, rightfully but again, that she didn't switch treatment right away and they grew.
She is offering you alternatives to Xeloda. Piqray and Fasolodex, or Enhertu. You tell us again you are living alone and cannot be incapacitated and you refuse to get help because your apartment is too small to have someone come in for a couple of hours a day or a week and help with shopping and laundry -- and, by the way, with getting things ready to donate and drop them off. How do you know those would incapacitate you?
I am again expecting you to say why all these things are impossible. They actually are not. You seem to be stuck in a loop, a defeatist loop, with an answer for everything, and no way out except death. What I think you need most of all is someone to talk this over with who can help you get out of that holding pattern and move ahead to try some of the options available to you, and actually switch oncologists.
I am on Capecitabine (generic Xeloda) 500mg. I take 3 in the morning & 3 in the evening. I too, am not hungry in the morning but I’ll take my blood pressure meds first then I’ll make a slice of toast an hour later and then take the Xeloda within 30 minutes. That usually does the trick. If I get nauseous for some reason, I have a prescription for Ondansetron ODT 8mg (generic Zofran - dissolvables).
I think you should call back MSK-I had my second opinion there and I have Medicare but gave commercial insurance via COBRA. And call NYU LANGONE! I will ask my son if Columbia Presbyterian takes all of your insurance. He’s a Compliance Officer there.
When I mentioned to a friend about MSK, she told me that they did not accept NYC Medicaid so when I went to their website, it was true. Apparently, they have a location in Rochester, NY that does, but it may as well be in China bc I can't get there. I am also on 75 mg. fentanyl pain patch, take at least 6 20 mg. of oxycodone per day (two years now, so they feel like baby aspirin), gabapentin which does nothing but I am told by my palliative care doctor that I cannot just stop taking it bc I will have seizures, plus I have been on 3 mg. of xanax for over 25 years (way before it was even considered a controlled substance and you got refills), plus an inhaler. So much medication it scares me.
Youve had lots of advice regarding 2nd opinion. If this is something you could arrange id also echo that advice.
Then you should be clearer on the options and likely outcomes and this will lead to better decision making based on what is important to you... quality of life.
Dont be afraid of your consultant. As someone else rightly said... theyre working for you not the other way round. The fact you feel so stressed about what she thinks is, in itself , good enough reason to seek another specialists view.
I think you know this already but perhaps need a little assurance to support you. We're with you all the way.
Thank you. It is hard for all of us, but I imagine how nice it would be to have family or friends that live close by, etc. l actually asked a former coworker who I have not seen in years if she would be my health care proxy, etc. She said no problem. I have made her the beneficiary of my life insurance which is only $7,000 (guaranteed bc they ask no medical questions), and made her payable upon death for my checking account (which I told her may have $20 in there depending on what day I die.)
She is being kind by doing this bc I had nobody to ask and some people said they did not feel comfortable which I get bc they have their own families. It was mortifying having to ask someone. I am doing a direct cremation which is the cheapest one can do, bc they have do it and nobody gets ashes, etc. which I do not care about. I need somebody to have stuff taken out of my apt. The thought of my LL (I live in a coop building and my LL lives on another floor), going through my stuff drives me crazy. (Even though I will be deceased, it bothers me although from a realistic point of view, I realize once I am deceased and hopefully where I want to be, it will not matter. Sometimes I am my own problem. LOL
I have a DNR in place but I had to have a health care proxy. So my former coworker said she would do it.
I had not spoken with her in like 6 years. We had lost touch. I was very depressed and praying to God to bring somebody new into my life or someone from the past to help me bc I was so so stressed with having nobody to take care of anything when I died.
Then three days after my desperate prayer, out of the blue she emailed me. I tell her she was the answer to my prayer. She is an atheist so she does not believe that but I do.
She is single, no kids, lives in NYC with her girlfriend. She is an only child and when her father died, she had to fly to Japan to give some of the ashes to his family. She was then left with her mother. She cleared out and sold their home in VT and now has her mother in assisted living.
She said I can handle it, do not worry. I said take a day or two to think about it, it is a big deal and talk with your partner first. She said I do not have to, I can do it and I would not offer if I did not want to do it. So I am blessed with that.
Made the decision that I am not going to take them today. I need to do my laundry (several loads) and I was getting myself all stressed. I will try to get alot done today and tomorrow, I will try and take them.
Now you have things in place to cover the inevitable, whenever that occurs, you will no doubt feel a burden has been lifted.
The decision to proceed with treatment or not is for you and you alone to decide. I would not encourage you either way. Only the individual truly knows their circumstances and what is important to them.
It is hard enough now as I am alone 24/7 so I think from a mental point of view I am leaning towards stopping the treatment and enjoying what time I have left (which basically means watching netflix). I have not been on any meds for almost two weeks (except for that one dose of Xeloda) and I can't stop looking at my feet. They got so so swollen from the tamoxifen and afinitor and in the end those meds did not work as my cancer is still growing in my liver. I forgot what non-swollen feet look like. So I feel like I wasted two months and they did not work. Somehow, it seemed like this would go on forever.
Don't give up yet. I understand your thoughts on being bed ridden because of fatigue. It will likely wear off. Just hang in there. It is a rough ride sometimes. Have you contacted your local Cancer group? They offer lots of support including a friend phone call or visit. Don't worry about your apt. being small. They are used to that. Wishing you all the best.
Well from what I read about Xeloda, the side effects are cumulative which means the fatigue and other side effects actually get worse the longer you are on it and sometimes even people (it is not just used for breast cancer) who have to stop at two months bc of the side effects, continued to have them for several weeks after they stopped. Now, I get myself terrified of this med. Thank you.
As you know, I am now on my third cycle of Xeloda (Capecitabine) on the same dose as you. I have gathered lots of discussion information from others and many people have tough side effects and get their dose lowered- some by quite a lot- and it still works for them. I have been lucky so far, and in the UK was lucky enough to be tested for DPD levels, which were normal.
Perhaps your oncologist could start you on a much lower dose, and if necessary, increase it gradually as you get used to it. But as she doesn’t seem very sympathetic, I agree totally with everyone who suggests you seek a second opinion.
How were your side effects? She started me on the highest dose 8 500 mg. pills a day. The first dose knocked me out so bad I thought no. I read it is cumulative and gets worse and then even if you stop the medication, you can still have side effects.
So we agreed that I would cut it in 1/2. The hardest thing for me is eating first, then waiting a half hour and then waiting 12 hours before the second dose. Every other medication I was one it did not matter if you ate or not. It sounds ridiculous, I know, but I barely have an appetite. To think that I may feel this bad on this med and then find out two months later or more that it is not working would mean I lost the time I had left feeling crappy.
My side effects have not been bad. I am on 8 tablets a day, 4 @ 500 twice a day. The first cycle was the worst, I did struggle to eat and had no appetite but that has improved a lot since. My main SEs now are waking up in the early hours and the usual fatigue, sometimes a bit of nausea. I understand about you wanting to have quality of life- only you can decide.
She started me on that dose. I did it one morning and then was like Oh no, I am not going to deal with this fatigue again. I went to bed and could barely move. I read the effects were cumulative meaning that they continue to feel the fatigue or it got even worse. So odd, how some women have no side effects or they are mild, and for others they are awful. faslodex to me was the easiest part. It was like donating blood but I read where other women had bad reactions to it.
I definitely concur with others here to get a second opinion. I was on Ibrance for 6 years and it stopped working. I starting getting liquid in my pleura. They tested it and my cancer seems to have changed. I’m on xeloda and it seems to be working but at first I was a Sasquatch everyday not having enough energy to do anything. I felt like you, is this worth it, what am I doing. Xeloda can be lowered and what about going on Taxol if Xeloda is intolerable?? Do not give up!!!
How long have you been on xeloda and may I ask what dose? Did you just change the way you did things bc of the fatigue. I guess I have been spoiled bc the last few years on Verzenio and falsodex, I was not tired, food tasted different, but quite frankly, I would forget I even had cancer. I actually cried when it progressed to my liver and that I could no longer take verzenio or falsodex. It felt like losing a best friend. I was on tamoxifen and afinitor but then the CT scan showed the cancer in my living was spreading substantially.
When people say they have liver mets, do they mean like with me, three tumors, one 5.1, one 7.1 and one 11.1. I seen a photo used to illustrate the size of 5.1 cancer tumor and it was the size of a lemon.
So I am not sure if my cancer in my liver is more advanced than most and is that considered mets?
on Ibrance I felt nothing. Honestly Xeloda is the worst I’ve felt. Completely tired but the water in pleara also wore me out. Now I have a drain so that is a whole lot better. I’m on 1500 morning and night. I wanted to go on vacation so he dropped it to 1000 in the mornings so I wouldn’t be exhausted. It really helped. I’m back to 1500 now and every day is different. But I notice if I stay home and do less, I feel more tired than if I’m out all day!! I try to take naps that helps than force myself to do something. Hope u feel better and do not give up!!
oh oh sweet girl, quality of life is key but also being a nurse of 40 years something doesnt sound right!! The very first thing i would do is get a second opinion! There is so much more than that treatment out there! I want you to look up cyber knife radiation. Its for people who have multiple sites and it is articulate ad pin points all spots at once. I am not saying its a cure but i really feel there are so many other treatments so you dont have to suffer..
Just started xeloda this morning and like a lot of you am very nervous. I’m taking 3 pills 500 mg. twice a day. But I wondered what schedule you all are on. My onc has me taking one week on …one week off. Said this has proven to work well and not as hard on the body. Like many of you I’ve run thru multiple protocols and praying this one works. Had 5 1/2 years on ibrance and since then nothing seems to work. So now it’s xeloda. Please let me know your dosing schedules!
I started with 3 tabs-500mg- twice a day at the end of May & it’s still that way-2 weeks on and 1 week off.I’m up anywhere between 3:30am-4am. I have my coffee then take my blood pressure medicine, aspirin & plavix(I have a stent in my heart) at about 5am. At about 6am, I make some toast ( very hungry I’m the mornings). Then I take Xeloda within 30 minutes after eating the toast. I try to drink a lot of water during the day. I take my BP med again about 5pm. I cook dinner for me and my husband depends on the time he’ll be home from work-sometimes I’ll eat without him because I need to eat and take Xeloda by 7pm. But it’s ok to take the second dose 10-12 hours after the morning dose.
If you do not mind and you say it did not work, where was your cancer continuing to grow. Mine is now in my liver and growing rapidly, the tumors and the size of the tumors. My onco was going to do a week on and then a week off for me but after taking the first dose of 4 pills (500 mgs.) and within an hour feeling that fatigue and I was so surprised how quick it hit and then finally getting out of bed to have muscle spasms in my arms and legs for about 1/2 hour and I was already on pain medication. Then after an hour it stopped and I thought Nope, not doing second dose. I am sorry to hear it did not work for you, but where has it continued to spread?
your story sounds like mine. Ask about Enhurtu. It is shrinking my liver tumors and took my tumor markers down. One infusion every 3 weeks is better than taking pills every day for me. This medicine has given me a lot of hope.
That was on her list. Seriously, how bad do you feel on it? Any major side effects. My point is I need to be able to take care of myself so I cannot feel so sick that I am laying in bed. My apt. is too small to have an aide and I have no privacy. Any quick advice on how you feel on it since I have an appt. at 2:40 with her today.
I need to be able to do my grocery shopping, I do not drive and need to take public transportation.
Did you take Xaledo first and then was given Enhurtu. I am not sure if my liver is more advanced than most. I have three tumors, one a 5.1 cm, one a 7.1 cm and the other one 11.1 centimeter. Just curious. Thank you.
Kearnan, I am not Voneill and I am not on Enhertu but I have read so many positive things about that treatment. If it is an alternative for you then I say GO FOR IT.
I have had Xeloda and several other treatments that didn’t work for me. I did get sick and weary after my first enhurtu infusion for a few days. My second infusion she lowered the dose 10% and added more nausea meds. Much better. Had my third infusion yesterday, still at reduced dose, and I am feeling like myself so far. Liver tumors and tumor marker reduction have been remarkable. It’s too bad you can’t get some temporary help with chores though. I wish you the best. This cancer thing really stinks.
enhertu is for her2+ Or her2+low. Now that they’ve checked my cancer again apparently I’m not er+ anymore but her2+low son switching to perjecta and herceptin I think. Need to take those before I get on ENHERTU. I’m in canada
Enhertu was amazing for me--almost no side-effects and all cancers improved enormously over 8-9 months. If I hadn't then developed one of the very serious side-effects, I'd still be on it. I was able to exercise, garden, walk and even travel while taking it. My quality of life was the best since I began treatment years ago.
The infusions were nothing. I also got an anti-nausea drug and, every 3 months, a Zometa infusion for my bones. I got a port installed in my upper chest and my infusion time every 3 weeks was my time to enjoy seeing the other patients and relax. I miss it now that I'll only be there every 3 months for the Zometa.
She mentioned that. But the minute I heard infusions, I was scared. I am into this five years now. Maybe I would have more fight in me, but I do not want to take steps back into feeling bad again. May I ask how you take the Enhurtu and what side effects you are experiencing even though I realize that we all have different reactions.
The cancer center I go to does not use tumor markers. I was told from day one that none of the oncologists do bc they feel tumor markers is not a good indication bc they could rise and lower for various other reasons so I never knew what they were bc they do not use them.
Kearnan, grace to you my fellow warrior. Give yourself GRACE. Breathe, just breathe and calm down. This is hard, there are no two ways about it and having to face it alone is harder. Everyone here who can speak medically have offered good advice, get a second opinion. Don't give up please, they say it is not over until the fat lady sings and I have not sung yet. 😀😀 If you ever need to talk privately, I am a good listener. Give yourself GRACE. We are all pulling for you. Hugs and prayers my dear.
I want to echo what so many others have said. Second opinion, please! I know that is hard but just make an appointment with another oncologist. Your anxiety is so understandable. We have all had it. I have been on at least 6 or 7 different drugs, including chemo. Not all the side effects are so bad. Most are manageable, some of them made me want to give up. With one drug , I could not even walk to the bathroom. Changed drug, now I have my energy back.
There are lots of tools in the tool chest! Keep trying. Don’t let this setback get you down. Try to stay positive. We are here for you.
Thank you. The very few friends that know have told me that they would do the same thing. I have found a former coworker from like 10 years ago, that has agreed to take care of my body being cremated (direct cremation) and removing items from my apt. so I left her my small life insurance policy of $7,000 to do so.
I am still paying $50 a month bc it is a guaranteed life insurance, no medical questions asked. I have survived the two year mark so as of March 2022, it is now fully payable. Pretty bad when you need to find somebody to do this.
Today, I go back to cancer center to meet with my onco. I do not know how that will go. But although friends mean well, they do not realize how scary it is once one is at the stage I am at now.
At least I can post on this board and not be judged bc I know many of you are all going through the same thing.
I’m so sorry to hear what you’re going through. It’s heartbreaking.
Just like others I suggest getting a second opinion and would inquire whether you need a liver biopsy to determine whether it’s breast cancer Mets (you can’t determine it from the CT scan) and did they mutated. Based on the results, the next course of therapy could be determined.
I also suggest inquire whether you’re good candidate for the radiation therapy. You need to see radiation oncologist to answer it.
I understand that you’re extremely fatigued, but please don’t give up and follow these steps.
I am going to try and find your(?) reply that someone posted about having a biopsy and seeing that her breast cancer status had changed. so I want to bring it to show her. Thank you.
Updated: I asked about the biopsy and she pooh-poohed the idea. I think bc I got it from this forum board LOL
Yeah, that was my mistake. I do bring up what I read on here and what others oncos do. She does not like that. I need to be able to start throwing away stuff and all that bc a former coworker has agreed to act as health care proxy and taking care that my stuff is removed from my rented coop apt. I need and want to make it as easy as possible for my former coworker so trying to accept that I need to start getting rid of things. It was a tough decision, but for me, it is the best. I wish I had taken care of things BEFORE it got worse, but I guess I blocked out the reality of this disease.
Your post made me cry. I feel so badly that you are alone dealing with all this. I do think a second opinion is a good idea and there are visiting nurses that can help you. Your primary care can help you with that or a social worker. At some point all of us will need to ask for help. Believe me I know it's hard to ask. Just do what you need to do to get the care and help you need.
My palliative care doctor had suggested having a hospice nurse come once a week. She can monitor my vitals and such and let me know when it is time for me go to into the hospital. I am terrified to be alone and wake up and not being able to breathe or whatever and not be able to call for an ambulance.
At least the hospice nurse may be able to let me know it is time. The social worker is working or applying for me to get a medical alert button or bracelet so that if I wake up alone and struggling to breathe, I can press that button.
Oh yeah, they told me to keep my DNR on my kitchen table in case EMT has to come here, they need to know my wishes. So I now have it taped to the back of my door in my apt. I see it every day.
if you feel like your only choice is doing nothing or taking a lower dose - absolutely try a lower dose you can always decide to do no treatment if side effects are too much. Plan for the worse! So you have less stress when you actually need to enact a plan! Interview hospices, talk to people you trust! Ask the doc if you can expect side effects of the drug to decrease if you take it longer. Get a second opinion - if you stay on treatment you Deserve to have a doc you feel good about - you should not have to worry about the docs feelings.
She really had no idea of the side effects. When I was telling her about what I experienced on my first dose (and that was enough for me to stop the Xeloda), she said where did you get that information. I said I actually the read the entire two page pamphlet that came with the drug and she sat there goggling on her cell phone to see if what I said were true.
I guess though that they really not cannot tell you what side effects you will have bc everybody is different. But she NEVER heard of the hand and foot syndrome with Xeloda. SMH. I am going to see if I can find a stage iv oncologist that only deals with advanced cancer. I think I am her ONLY stage iv.
I agree with Mariootsi you need to ask for the assistance and help you deserve. I have read your many posts on here and you are a strong independent woman and I am so sorry you are facing this alone xx 🤗🤗 but as many of our friends here have said you are not alone we are all here for you 100%. We share your frustration with the doctor, understand your fears for the future and know the trauma of a drug change and all the side effects they may bring, but most of all we want what's best for you. I hope you are able to give this new treatment time to do it's work as I'm sure the side effects will subside with time. Wishing you all the best, sending positive vibes your way and a big virtual hug 🤗🤗🤗
Thank you. Much appreciated. Truly. I have one friend telling me yeah, I agree, it is time for you to stop and maybe go into hospice early. That is NOT what I wanted to hear. She said well do you want my honest opinion or what?
I said yes, but sometimes when you can hear the stress in my voice and my fear of my decision, it is better to give a little hope instead of just doom and gloom. She said she know if it were her, she would do this but I said until it is you experience this journey and the reality of facing one death's and knowing an approximate time, you may be surprised at the change in your thoughts once it is you.
I'm so glad you are trying the lower dose and are considering looking for a new Onc or 2nd opinion. I'm sorry your friend was not sensitive to your situation perhaps she didn't know what else to say. I'm sure you must now know how much we all care and want your treatment to work for you with minimal or no side affects. Sending positive energy your way xx you've got this xx 🤗🤗
lowering the dose has really made a difference to me. They started me on 4900 then 4000 due to swelling of feet, feeling sick, aching.
I decided to try 3000 per day, 14 days on 7 days off.
I said if they didn’t agree well I would go onto something else or reduce it myself anyway.
This month I feel so much better, no nausea, no aches, please try a lower dose . The oncologist said actually it will probably be as effective and I’m willing to take the risk. I’m not going to tolerate to the point of feeling like death.
It’s amazing how different this month has been and no feet swelling and today my pleural effusion showed a reduction in fluid too.
I got home a short while ago. My onco (as expected) told me not to go by what I read on this forum board bc everybody is different. Then I was telling her things like you have to eat and wait 1/2 hour before taking these meds. She said are you sure (DUH)? Then she took out her phone and googled it.
I said to her, see this is what I mean. You are telling me NOT to go by what I read on this forum board, which I prefer because these women have or are on this medication so I get true facts, and yet you are sitting there googling it on your phone. (This is why she does not care for me either
Anyway, she told me to try and cut it in 1/2. So two 500 mgs. twice a day (1000 mgs.) as opposed to the 8 pills (4,000 mgs.) per day. I said you are googling that and I prefer to go by what I read although I realize everybody is different. I am going by a week on and a week off starting tomorrow. If that is too much, then I will only take three per day.
She gave me no instructions about how to take this med or anything. I told her I read the pamphlet that the speciality pharmacy sent with the med bc you gave me no instructions at all.
Can I ask you if you wait a full 12 hours between each dose? And can you no longer eat fruit or salad. Is the diarrhea as bad? I will try it, but quite frankly if I feel any really nasty side effects, I will cut it down even more. I have no faith in her at all anymore.
I do love my palliative care doctor and the other departments. I just do not like my onco anymore and she does not like that I challenge her. LOL...she tells me I should not continue to read information on this board, but then she googles it herself bc she was not positive that I had to eat before taking them? Do you see my issues?
please do not misunderstand me, I think your oncologist is sub-par for sure.
however, in her defense 'of googling'....docs use their phones for so many functions in this world of technology that we live in.. the world of medicine is very complicated and requires precision and the use of bonafide doctor apps downloaded to their phones has become mainstream. for example...all the docs in the ER's whip out their phones constantly to look up detailed information...meds, lab values, disease symptoms etc. they have the needed background knowledge but cannot remember everything. no one could. they used to look things up in books. phone apps are much quicker and up to date.
doctors have to look up med doses and side effects all the time. they cannot possibly be a 'walking dictionary'. ...who could remember every med and doses and side effects? you would have to have a photographic memory. I bet she is using appropriate 'doctor apps' when she is on her phone. not using google quite the same as we would. I hope that makes sense to you. it does to me. my two cents. (btw...nurses use their phones for medical apps too....I am a retired RN)
you have mentioned the googling many times so I know it bothers you a lot. I hope this eases your mind a bit🤞
yes, that is one of the resources I was referring to. the PDR (Physician Desk Reference), previously used by all physicians in book form, has been replaced by many with the app that can be downloaded to their smart phone. it contains all meds and their side effects, dosages, contraindications etc. like I said before, no one could memorize all that detail. the hardcover book was about 5-6 inches wide. and there are also many other helpful resource doctor/medical apps to be downloaded as well. XO
hi I’m glad your giving it a go at reduced dose, it really is worth a go.
I have had no diarrhoea at all , I tend to take the pills about 10 hours apart if I can. I eat what I want, never told not to eat fruit or salad.
I hope the lower dose is much easier for you, it’s worth a go, hang on in there for a cycle and see how you feel.
Keep us updated.
Your Onc sounds like she hasn’t had much experience of these pills. I know some hate us using this forum but I can honestly say it’s been the biggest help to me.
Hope your day goes ok, relax, read a book or mag, take your mind off the pills as much as possible . Hard when you’re tired but you will get there you’re doing so well dealing with this.
I never have pleural effusion so not really sure that that is. She did say though that even with the tumors on my liver growing, that the tests show that my liver is functioning properly. I told her (she hates this LOL) that I had watched a cancer surgeon from John Hopkins say that he had patients that their entire liver was covered in cancer (not just breast cancer patients) and that their livers functioned fine but instead they passed away from something called "swamp gas" which is something that happens I guess for some when it is in their liver. He said so unlike, what people think, they do not die from liver failure itself.
Again, my onco made a face. LOL. My last visit with her a week go we were both angry with each other. I am going to seek a second opinion. It can't hurt. But I am going to try and find one that deals specifically with late advanced cancer.
pleural effusion is when the lining of the lung fills with fluid, in my case breast cancer cells in the fluid. It causes extreme shortness of breath. I chose to go into theatre to get an internal pleural catheter in so I could get it drained at home. They left me 7 weeks lying on sofa couldn’t breathe , got admitted to hospital but because of Covid no one to drain it and a big waiting list. I had to ring the respiratory consultant myself, he was great and did op , it was half hour no sedation and he let me home the same day.
My Onc did not know I had it done lol but agreed it was the best idea when I told her after the op. She asked to have a look as she had never seen one lol. I have a review with the consultant Tuesday but once again had to organise myself. Seems NHS so busy in UK they don’t communicate anymore.
Yes get a second opinion , did you try a low dose of the xeloda or have you decided to seek something else.
I am NOT doing the Xeloda. Read way too much about the hand and foot syndrome. I live alone. I need to be able to use my hands and feet so I can clean, do my laundry and take care of myself. The eating part is hard for me. I hated it. I love my palliative care doctor which is part of the medical center I go to. I am trying to find if there are oncologists that treat primarily stage iv advanced cancer patients. I swear my onco has no clue of any side effects. I think she just takes it from some manual they give her. I actually asked if she has ever treated any stage iv. When you have no trust in her, it is time for a second opinion. But she told me 3-6 months with no treatments (and to subtract two months bc the tamoxifen and afinitor did not work and the cancer tumors continued to grow bigger in my liver so she said I should minus those two months.
I am not feeling well (now I am on nothing bc the lower dose did not help and to me bc I have no kids, spouse, siblings, grandkids, I am not willing to suffer a downgrade in my quality of life. Just tired of it all.
I am into this five years. I am wondering if there are many on there that have been in this for five years. This would be my fourth line of treatment.
Hey sweetie! I can relate to your pain, fatigue, stress and fear. I am on ibrance and faslodex with met to liver. Truly understand all you are going through.
she googled ? That’s funny except it isn’t. She sounds like a piece of work
Per the salads and all that. Some women claim that folic acid in their foods exacerbates the hand and foot issues. I eat lots of veg. I try (unsuccessfully) to eat a plant based, highly nutritious diet. I have mind hand and foot but nothing debilitating.
You are now on the same dose I am on—2 500 tabs twice a day. Hopefully it will be effective with minimal side effects.
On verzenio, I had diarrhea, cramps and nausea. Talked to a great nutritionist. As long as I am having those problems, I have to eat what seems like an unhealthy diet: no raw veg., no salad then, and overcook vegetables. I also need more protein. I can eat more meat, which I don't like to do, or add pea protein to foods. I am taking a break to get stomach in order, and she said to amp up the vegetables and fruits, to go back to whole grains instead of white rice. So it depends on the side effects you are having, and a temporary less healthy diet is sometimes necessary to avoid other problems, like low electrolytes.
See, on the pamphlet that came with the Verzenio, it stated NOT to eat raw fruit, vegetables, lettuce bc of the severe diarrhea from Xeloda. For years, it has been a bit of a struggle with constipation (bc I am also on 75 mg. fentanyl patch and oxycodone) so I was eating whole grain cereal, fresh fruits, etc. )
The pamphlet said NOT to eat those kind of foods and try to eat rice which binds and red meat (which I had stopped about a year ago or longer). So she was NOT even aware of that.
My heart goes out to you! Having mbc is stressful in the best times but easily becomes overwhelming!! Have you asked the palliative care doctor if it is possible to change oncs within the same medical organization? I think you are wise to be looking ahead, and thinking about plans you'll need to make.
I'm a long timer with MBC, and one of the things I've learned is that how I feel initially when taking a new-to-me medicine is often now how I will feel with it as my body gets used to it. I'm also used to being a strong woman who has lived alone in the past. I'd only been married to my current husband for two years when I was diagnosed with MBC and he's been there for me whenever I need him to be. But he also has health issues, none as scary as cancer, but I worry about how I would be able to live alone if he was to die first! I truly understand how hard it is to ask for help, and sometimes even to know what help to ask for! Your palliative care people ought to know about local resources, from visiting nurses and what they can do, to grocery delivery programs and more. You might ask about independent living places (I''m not even sure what they are called!) in your area. I've visited a couple of different friends who live in one where there are different levels of housing, from wholly independent duplexes on the same large grounds as the large multi floored building that has one and two bedroom apartments, smaller ones (Ican't think of the word) that have a small kitchenette, full bath, a very large dining room where residents can eat 1 to 3 meals a day, plus a number of specialized meeting and hobby/activity rooms, transportation to medical appts and other activities. My friends are strong independent women who absolutely love the place! They can bring dogs and cats (I think the number is limited) and there are garden plots that the residents can use. Just visiting the place made me realize there are options that I could use if I need to.
I think there comes a time for many of us when quality of life needs to come before length of life. Some folks shy away from that but for me, having ideas about what might make me decide that time has come gives me a sense of peace. I hope you will find peace in whatever you decide to do. and that you will let us know ..........................Sending love and prayers.......
Met with my onco yesterday. We both got angry with each other. She said it is NOT good for me to be on this forum board and not to expect that I would have the same effects as someone else. I said I am aware of that but I much prefer to see in real time how it affects other women rather than just go by a pamphlet.
I only took one dose, which she had me at 8 pills per day at 500 mg. The four pills knocked the heck out of me.
I then was telling her what I read about not eating raw fruit, and more binding food and she said I do not think that is true (It said on the pamphlet that the pharmacy sent me).
She then proceeded to google on her phone and I was already angry and upset and I said to her, Oh well, I should NOT read how it affects other stage iv women and yet you are googling to give me an answer to a question.
I am down to eating about one or two very small meals a day. I am just not hungry. It is hard to force myself to eat (and I am overweight also which makes it crazier).
Now, I am terrified of this medication. I was supposed to start today taking 2 (500 mg.) in the am and (2) in the pm and it is 11:00 am and I have not taken them yet bc I am not hungry.
I have lived in Brooklyn my entire life. I do not drive. I do not have the money to move even if that was an option.
Of all the medications I have been on, this one is totally different. Usually, the meds constipate me and I have changed my eating habits totally and now I am supposed to change it back to binding food.
It is more about the quality of life now. Since I am alone 99.9% of the time, I do not want a medication that is going to affect my hands and feet.
I am just very confused lately, very very depressed. I do not have the energy to try to find another onco at this late stage.
My palliative care doctor told me she has seen people stop treatment bc of side effects or whatever, and go on to live for another year. If I find another onco, then I would need to leave that cancer center and I would lose my palliative care doctor who is fantastic. I think I would have left over two years ago if I had not met her.
Is there anyone who had NOT had severe effects from this medication?
to be clear. A second opinion is NOT getting a new doctor. It is getting another set of eyes on you to see if there is something not being considered. It’s standard practice
I think you just call the hospital of choice and ask. Or go online and see what options are available.
Ask your palliative care doctor for advice. She might know a good person to try.
It may be that what you’re on is the best option. But what if you learn something new? I don’t think you have much to lose right now
can u complain about this doc and switch to someone else? Her googling this information is ridiculous. She should know this on the top of her fingers. I learn so much from these forums. If docs feel insecure about themselves because we challenge them too bad for them. They should have an answer to every challenge. You really should consider a second opinion please!!
I would prefer to get a second opinion outside of the cancer center I go to. They are all colleagues and they all work together on the same floor. I do not want to humiliate her by asking for another onco at the same exact cancer center and floor. I had my CT scan 8 weeks (instead of my normal 3 months) bc it appeared from the blood work it was not working. She would have kept me on that for another month. I said I want my CT scan early. I do not want to waste time taking these drugs if they are not working and my cancer is spreading. Sure enough the CT scan they were not working and the tumors were growing .
I am trying to find out for those who have it in their liver. I have three tumors one 5.1, one 7.1 and one 11.1 (all which grew quickly from February to June 2022). Is that considered more advanced or is that the norm for metastatic breast cancer patients when it spreads to their liver. Thanks.
Do not despair, there are plenty of treatment options open to you. I got horrible side effects with faslodex and capecitebine - they also did not work. Now I am on oral cyclophosphamide and it has been working for 9 months with far fewer side effects. Your onc will advise. My onc does not recommend CT scans until I have been on treatment for at least 6 weeks, so that it has time to work.
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1.31.20 CT scan w/contrast of my lumbar spine due to my back pain. Rad. report from scan. Need somebody to look at last paragraph.
