Chemotherapy for Stage IV
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Bedu, Leukine gave me an elevated heart rate so they switched me to neupogen. Maybe you could try that and see if the side effects aren't as bad.
Calico
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Oh Marybe,
Damn. I was hoping it would be better. I know you are worried. I think a second opinion might be a good idea at this point. Is there a good teaching hospital nearby? I think that they often have very good doctors on staff. Or at least really up to date. It will be interesting to see what your onc thinks about this and what he will suggest. There has to be another chemo out there that can kill the cancer. Just have to find it the right one. Thinking of you, Marybe. Maybe call that doctor you previously conferred with T MD Anderson??
Judie0 -
I did Judie....contacted the onco at MDA and he is just so wonderful about quick responses. He thinks I should do Xeloda and he says he would be surprised it is does not work for me. I asked about going back there and he asked when I wanted an appt. So I think what I am going to do is TELL my onco I want to do Xeloda and then if it doesn't work, I will go back to MDA sooner rather than later. Today I go in, but just for blood work.
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Marybe - I was on Xeloda for 8 months. I was just taken off of it in order to start the Johns Hopkins BC vaccine trial. I hope its great for you...I loved it....even though I did develop the hand/foot issues. The side effects were tolerable since it was working.....hope it works for you too.
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That MD Anderson onc is VERY quick to respond!! lol...that's really good! Xeloda, huh? Sounds like a good alternative. I am doing quite well on it, Marybe. Not much to speak of in the way of S/E's at least YET. Being able to take it orally is a big plus. Don't feel like I am living at the doctor's offc. I don't know for sure yet if it is working but TM has dropped a wee bit so maybe it is kicking in. I do hope it will work great for you. Do you thi k Dr Cody is goimg to disagree about the Xeloda?
Judie0 -
Marybe: Sorry to hear that the Halaven may not be working... ! Cincinnati area is unfamiliar to me, but if you are not getting treated at a major medical university cancer center, I would try there next. The Cleveland Clinic is ranked #9 in the most recent US News Best hospitals: Cancer Centers.
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Marybe sorry to hear about this, I have been unable to post recently as I am trying to catch up reading all the posts. I hope you are able to get a good plan wherever it takes you.....best wishes.....
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Marybe, heads up
This may be old news, but MY insurance was a b**ch to get Xeloda from. Had to go directly to them, they have their approval process, the copay is 20% of $2500...... :-0 Genentech said yea to giving discount, but that had to be "processed" by our Rx insurer. Finally on it's way, will start tomorrow. So, I would get on it now.
Isn't it fun? I will say that I like the sense that I will be in control of taking it and not sitting in the clinic for hours and hours. could be the one we can relax on for awhile. Kathy0 -
Instead of Chemo I may be going on radiation theraphy. Has anyone with ever had this? I was curious. I meet with the oncologist tomorrow.
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I doubt if I would have ins problems with Xeloda....it has paid for everything else I have done, BUT I was shocked that it will not pay for a cell search especially when it always has in the past.....they sent this letter about how some oncology board says it is not a necessary or good diagnostic test for Stage lV BC which really is a bunch of BS.
Poohfan....I suppose they determine how large the area is and if it more or less localized would choose rads over chemo. I had rads for my sacrum, but that was the only place and that was because I was having pain there.
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I asked my onc about radiation early on (a year ago), and he said he'd be willing to send me to a radiologist for a consult, but I got the distinct impression he felt like it wasn't worthwhile given the level of my tumor markers which indicated it was systemic and needed to be dealt with in a systemic way. Anyone else gotten any feedback on that?
The other issue with me is I've already had radiation in this general (but maybe not specific) area, so we don't know if they would even do radiation again on me.
Calico
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Okay, marybe, but one more bug in your ear. My bcbs paid for everything without a hiccup, as far as I knew. It must be $100,000 for scans, procedures, Abraxane $5000 times 24 treatments, etc. But $2500/ month for pills, big challenge between me and them.
Fortunately, genentech picked up the $500/month copay! Whew.
http://www.xeloda.com/financial/co-pay-program/
Love, kathy0 -
Well,the first hurdle will be my local onco even consenting to try Xeloda on me....and believe me they check everything out with the ins co before they even write the Rx...that's the way they operate this days. He will probably come up with some other chemo that won't work. Not trying to be negative, but just going on the track record thus far. I know it is not true because so maybe people have said SEs don't necessarily relate to the effectiveness of a treatment, but for me unless I get some bad SEs the stuff has not worked....with the halaven I had SEs to begin with, but then the hair loss stopped, the constipation went away and even the neuropathy is about gone.
One of my friends is flying to a Cancer Center of America on Monday for an opinion.
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Ok I warned ya! No, really, good luck. You have out done most people, I bet you will will continue to surprise everyone. K
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I found out that I cannot have radiation. The cancer is throughout my liver. My oncologist told me the average person had a couple of months with a liver in my condition. I was definately not ready to hear that.
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Poohfan.....lst of all no doctor really should tell you something like that because they don't know...say it looks grim, but don't say you have a couple of months. And are you average?....I would take offense to that. What's the liver look like....how large are your tumors? My largest one is 7.2X 6.6cm and there are a bunch of other ones. I know a woman here in CIncinnati and we have met only once, but email and talk on the phone a lot about our treatments, how it's going, etc. When she found out it was in her liver, it looked really bleak. She said she saw the scan and thought the light spots were her tumors....it was mostly dark except for a few light spots, but NO, the dark area was the cancer and her liver was filled with so many mutiple tumors, it was almost all cancer. I think that was in Feb....forget when but know it was cold when we met....I will ask her when she started treatment. She has had good results so far, has had some crappy days, but in general is doing very well and still works, although she said there are some days when she is just knocked out and doesn't do anything. And her tumor markers are down....anyone's are down compared to mine these days....and there has been significant shrinkage and her liver is functioning although she said the enzymes go up and down. But the point is, SHE IS GETTING BETTER. Do you have any dimensions or test results you could share? Are you going to talk to another oncologist? Would you qualify for a trial? Just keep in mind, WE ARE PEOPLE, NOT STATISTICS. Average person, my eye... It may be good you aren't having rads.....my onco always puts that off since he told me it globs things up and makes it not as easy for the chemo to get to where it needs to go....I have only had rads to get rid of pain.
Addition: I just called her up and she has been under treatment since Feb. and I told her what your onco said about a few months and she was as outraged as I am.....she said you need to see a new oncologist.
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Hmmmm, I was just reading about Xeloda(capecitabine) on the medical website and it says there can be problems with it if you are on an anticoagulant, which I am. I wonder if that is why my oncologist is always so hesitant to use it when I ask him about it. I will have a lot of questions to ask on Tuesday.
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Oh it gets more confusing! My onc put me on it BECAUSE of the lovenox: fewer sticks. Oh how I begged for coumadin. No way she was writing that 'scrip. Harder to regulate, she says. I trust her, she's the best. Just harder to take two shots a day than any pill.
On the bright side, I took all of the great notes y'all wrote about xeloda to the store and got supplies
Love you guys0 -
Poohfan, the average person WITH NO TREATMENT only lives a few months with a liver like that. What a cruel thing to say! With treatment, you could have lots more time! Honestly, what are some oncs thinking when they say stuff like that???
Marybe, I hope the Xyloda works for you!
Navelbine has been pretty easy for me but the leukine is horrible. I have those bad body aches and now terrible heartburn.
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coolbreeze, I totally agree with you and hope poohfan is reading our posts...I honestly cannot imagine an onco saying that and don't know how large of a tumor we are talking about here, but in looking at previous posts that talked about her tumor markers and scan reports, it did not sound that bad to me. Listen to me,....amazing how where we are at changes our perspective. I remember 13 yrs ago when I found out it was in my liver, I really thought it was curtains for me and I called my friends together and more or less told them so. Now 13 yrs later, I am still not thinking this is the end even though I know I need to get a new treatment under way soon. So Poohfan, don't listen to that onco....listen to us, who do have liver mets and are sure as heck not buying that two months for the average patients....What Coolbreeze says is true, that might be the stats without treatment, but as I told you before we are not statistics, we are people! I never had heartburn til chemo....was on protonics at lst, but had to move to nexium when I was doing navelbine and it works. What is leukine?
K-Lo....lovenox?....that gets to be very expensive doesn't it? I am sure my ins co would balk at that one....a few times when I was off the coumadin due to surgeries we had to fight with the insurance company to get the lovenex paid for....and it was even worse with arixtra. My INR is messed up a lot of the time....too high or too low because I ate something or didn't eat something or was on an antibiotic, but I have been on it so long I can pretty much regulate it myself....and also they are used to mine going up and down and I have only gotten into any real trouble (clots) when I have been off of it totally so they don't even get too upset if it's off anymore. I would love to not have to take it at all, but know the only way I could do this would be if I had surgery to remove the blockage I have and I and maybe the cardiologist I see are the only ones who think this is a good idea....my onco does not. Tues will be interesting.
Where did the dog go?
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Marybe: I was on Xeloda straight out of the hospital in December for a DVT in my left arm... had no problems with and my 5 coumadin (50mg) a day since December, on Xeloda, Gemzar, Navelbine, and now on Avastin/Abraxane. K-Lo, no way could I do those shots every day!! AAWK!
Poofah: Get a second opinion at a major university cancer center if you can! There are too many good drugs still out there, and lots of new stuff in clinical trials too.
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New trial in Fredericksburg, VA for Triple Negative Metastatic Disease
Brostallicin & Cisplatin in Triple Negative Metastatic Disease -
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New treatment plan is going to be Xeloda with Ixempra and I am staying on my warfarin (coumadin). I questioned this and asked about doing lovenox and he said that the cost would outweigh the benefit. He said we will just closely monitor the INR levels as we do now. I said maybe I need to get one of those testers for home to check it and he says Why the H would you do that. You are in here all the time anyway, We will check it weekly.
My pharmacy is the one balking on the Xeloda, not the ins co....they ran it through to check, but the problem the pharmacist told me was that it comes in a bottle of I forget what....1000 maybe...that would be their bottle and of course they dole it out to patients. But I go to a small local owned pharmacy and they have no other customers on Xeloda and there is no quarantee I will stay on this so they might get stuck with whatever is left and he says it is very expensive. So tomorrow I am going to ask my onco where most of his patients go....CVS, Walgreens, Kroger or where.....I am sure a larger pharmacy would have it in stock. I am supposed to start taking the pills the day I start the IV chemo so that would be next Wed. Anyone ever do Ixempra?
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I love that, "why the h.ll would you do that?". Are you relieved to get xeloda? I do find genentech to be very eager to help. They may know a good source. Mine is shipped to me.
Mary I can't find lxempra on the net. Any other name for it or spelling?
I'm taking zofran 4 mg before mine but I guess you'll be getting premeditated at clinic.
Very very good luck w new regimen! Kathy0 -
It is ixempra....I have a printed paper on it from the onco's and there is someone on here taking it with Xeloda....I just put Ixempra in search. I think it might be ixabepilone, but am not sure. The onco from MDA says he would only combine it as a last ditch effort...that is not to reassuring....says neuropathy will be the issue and he would add the 2nd maybe later to Xeloda if it does not get results on its own. Relieved?....at this stage I am just about ready to chuck the whole deal...the Rx he gave me isn't even for the right amount of pills for two weeks! And I am not a math wiz.....I called the office, sure enough it was wrong!!
I am now concentrating on getting someone to go see Paul McCartney with me....husband said well, he really wasn't my favoite Beatle so I said fine, go see George or John. I AM going regardless.
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That's the way to handle a stodgy spouse!
Hate to repeat, but genentech is so eager to sell the stuff, they might do some of the work for you. Specialty pharmacy number 877-408-9742
Pssst, send me your coumadin and I'll send you my lovenox syringes. Only twice a day!0 -
Ixempra is on my list of 'next things to try' ... don't know much about it. You should be able to find an online mail order source for your meds if your local pharmacy doesn't have. I am wishing you lots of love and success ! And yes, I get weekly INR also... on coumadin forever, I suspect.
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TXK, Has the abraxane stopped working or are you just planning ahead with the Ixempra? K-Lo, that sounds like a plan to me....since I am constantly alternating and changing my dosage....sometime 7.5, sometimes 5 mg, I get something like 60 tabs in one refill and have a ton of it....it's warfarin, not coumadin, but supposedly the same thing. Be on the lookout for a brown unmarked box with no return address. LOL. I doubt if anything will go wrong by staying on the warfarin....TxKaren can attest to the fact she did fine, BUT the printout says right there that you should not be on a blood thinner, not ever aspirin and my onco is just so blase' and saying Oh, you don't need to worry about that. I wonder why they are so eager to sell Xeloda?
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Hi Marybe - I think most of us on Xeloda get it thru a "Specialty Pharmacy". I do, and they have been fantastic. It comes via messenger or UPS, right on time, never misses. And in fact the pharmacy calls me in advance of renewal time to remind me to renew, so that I won't miss a single dose. Xeloda has been really good for me and I hope it will be for you. I think it's a great drug - gentle but effective. Regarding your new news, I am sorry to hear it, but I have faith that you will be able to beat the bugger back. I read each and every one of your posts, especially when I am "down", because you are such a courageous fighter and winner. You lift my heart and give me hope. Keep on keep'n on, hon.
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Why thank you, Sue.....what a nice thing to say. People are always telling me how I have so much courage and what a fighter I am and it really just amazes me because I look at myself as just another woman with breast cancer doing what I need to do to live and I keep on doing it because living is what I want to do. I am glad to hear you are doing well on Xeloda since I really hope that is what I am going to be doing....took the Rx to the Kroger Pharmacy after work tonight and will now let the ins co, and the onco's office do their thing with preauthorization so it can be filled. Wed. is the day I am to start it....Ixempra also, but I am going to tell him I want to save that for later...and hopefully the Xeloda will work for me.
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