All about Xeloda
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Do we get X at the local pharmacy, or is it shipped from a specialty pharmacy?
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Shetland- it comes from a specialty pharmacy.
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Thank you all for the good wishes for my mom, so far she's hanging in there. Attended my granddaughters birthday party today at a park, and it was hot, I couldn't take it and had to keep going to the car and sit in the a/c. I am beat.
I was able to p/u my X at my regular local Kaiser Pharmacy
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Thanks, leftfoot and Mimi. I am finding it hard to wait for my X prescription. It has been almost a week since my onc said we would change treatments. As apprehensive as I am about hfs, it worries me to be off all meds. So I'm not enjoying the break! I sure hope I can start in a few days. I can feel my liver. I expect to hear from the nurse tomorrow.
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So your doc didn't give you a prescription? Are they supposed to be shipping it toyou?
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I assume my nurse has been working on getting insurance authorization and submitting the order to the specialty pharmacy. If she tells me that is done, I will call to arrange delivery. I just don't want to hear we are waiting on insurance.
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It happened to me and I had to call make a few calls to the specialty pharm and to my doctors office to get them in sync. probably delayed my treatment for about a week. Honestly though, I dont think that week will make a huge difference. Enjoy the feeedom of your body on no meds...but do follow up.
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Hope you get it soon! In the meantime, do what Stef said, enjoy your time off
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I too had an anxiety-producing delay in receiving Xeloda. Weirdly, my insurance company uses a different specialty pharmacy for Ibrance (which I had just been on) than it does for Xeloda - I guess things weren't complicated enough? - and my oncologist office didn't realize that. It took me calling around a bit to get things moving correctly.
The good news is I felt less pain even after a few days on Xeloda, which evidently is common - it can start working that fast, as I understand it, at least in some cases.
So hopefully you'll get it soon, and feel its effects soon too. Wishing you the best!
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Thank you, Stefajoy, Mimi, and seagan. I had to do a lot of follow-up to get my prescription when I started my last treatment, too. It just seems harder this time as I process the move to chemo. I have had a week of headaches and hot flashes (Faslodex withdrawals?) and more liver aches. I know I should enjoy the time off and/or use it to get my house tidied up, but my energy or motivation is low. Maybe my body is fighting against cancer extra hard without meds to help it. I am worried about the cancer growing and about what the side effects of X will be. I'm sure I'll feel better once I start X. I did do some container gardening and guided imagery with deep breathing yesterday.
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While I don't have a link to the specific study at my finger tips, I read a recent study out of Japan that provides much hope for Stage IV breast cancer patients on Xeloda. Out of 984 patients on X, their life expectancy increased significantly while on X. Those who got the placebo did poorly. As I said I will look for a link to the study but it was incredible news for us on Xeloda.
Amy
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Amy, although I don't think it's entirely clear, I believe what this study is about is giving Xeloda as adjuvant tx to Stage 3 patients. But it certainly confirms what a powerful drug we're on!
http://www.cbsnews.com/news/breast-cancer-drug-xel...
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Shetland pony, I would like to suggest that you don't think of it as chemo. You are anxious about being on "chemo" again. But really, its just another pill. I mean, yes it does behave differently than the targeted therapies we were previously on, but so far it doesn't feel much different. Just as a way of dealing with the mindset about chemo, maybe try not to think of it that way? Sometimes denial is a beautiful thing...and this one is pretty easy to deny, as there are no infusions, and I still have hair.
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STEFAJOY! You are our Xeloda CHEERLEADER!!!
What a fabulous way to think of X. Really and truly, they are JUST PILLS. We pop 'em twice a day with a meal and that's it. No needles, no driving to the infusion clinic, minimal hair loss (mine has thinned a bit, but I keep it short now anyway).
Yes, I have HFS, and I have to wear gloves and socks (mostly to hide the fact that I no longer have any toenails and to hide my bright red soles that seep up almost to my ankles), and occasionally Mr. Diarrhea visits me, but it's not intolerable.
The fatigue is something else, tho. I understand the hormone suppressor drugs can do that too, along with major bone and muscle pain, which I don't really have. Since recent rads, the only pain I do have is from lumbar bone mets and degenerative arthritis - and I think the degenerative arthritis pain is worse now. I'm also having some hip pain and stiffness, but that can also be partly because of arthritis and a little progression in that area. I just have to accept that I am NEVER going to be completely pain free again. (Some of my friends who are younger than me have more aches and pains than I do...)
All in all, I will TAKE IT. I hope I'm still on X for several more months. I have another scan in August, and I'm NOT EVEN THINKING ABOUT THAT YET. I refuse to let Mr. C take away the joy of my summer like he did last year.
Yes, there are things I can't do anymore...but part of that is because of arthritis, too. So I'm just going to live in the moment as much as I can.
Hugs, everyone!
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To those on Xeloda, I think of them as my vitamins - they go down much easier that way!
Amy
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I couldn't resist....
It's even good for our brains!
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Hi Ladies,
I'm now a member of the Xeloda group. Mets spread to the liver after being on Ibrance for 8 months. My MO at Dana Farber suggested this as the next treatment. I take 3000 a day. 1500 mg in the morning and 1500 at night. Today will be my third round. Two week on, one week off. I had to have counseling about this chemo and they said no trauma to hands or feet. It willl prevent the hand and foot problem. They told me that after the third round is when the side effects kick in. So far so good. The only side effect I have had is it make you really tired so I take a power nap and I'm good to go. It's brought all my liver enzymes back to normal except my Alk Phos which is still off the charts but coming down. It was 550 now down to 325. Some improvements. I hope this works for all of us for a while. Thinking of everyone.
Hugs, Anita
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My wife is now well over a year on xeloda. Last cycle she did only 1150, twice a day, one week on, one week off. Still getting a drop in tumor markers. One of them another 15%. Oncologist is calling it miraculous. He can't believe the drug is still lowering them further. If we stuck to it a couple more cycle, I wouldn't doubt we would see them in single digits. However, the plan is to switch her to ibrance.
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Husband- I do not understand the reasoning behind switching from a medication that is working, and working very well it seems. At this point in time, I dont think I know anyone who has gotten more than two years on Ibrance (and, at least for me, my tumor markers rose the entire second year). I don't know your wife's situation, or if she is having bad SEs, but if it were me..I would stick to what's working til it don't work no more. Curious if your MOs reasoning, I feel you dont mind sharing.
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The Onc thinks she will have less side effects on the ibrance, than the xeloda. She can't sleep, partly because of the hand foot syndrome. He also thinks its better to switch her while its still working. I figure she can try the ibrance, and if it doesn't control her cancer, she can switch back to xeloda. Also, she will never know if it is easier, or harder on her, unless she tries it. He thinks she will, or may have, better quality of life on the ibrance. That remains to be seen.
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Husband, I'm sure you know, Ibrance is not a stand alone drug. It's always used in a two-med combo with either Letrozole or Faslodex. If Xeloda was your wife's first line tx for liver mets -- and if it's working -- I would also be very reluctant to switch. We're all different, but some women (like me) actually developed liver mets while on Ibrance, so like Stephany, I'm also questioning her onc's recommendation. Is your wife's HFS really severe, even with the one week on/one week off regimen?
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Husband, I agree with Dianna. I developed liver mets while on Ibrance. I'm on my third round of Xeloda and haven't had many SEs. My liver enzymes have come down but as of now I have no idea about my TMs. I will know if Xeloda is really working when I get scanned in July. I would also question that MOs reasoning.
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I have asked my wife to set up another meeting with the oncologist before carrying out with the switch. I want to better understand his rationale. When I talked to him on the phone, he told me there were two reasons, but I need him to elaborate on the reasoning behind them. He said 1) Better to switch while the xeloda is still effective 2) unacceptable level of side effects she is currently experiencing. Number two is pretty clear. Perhaps the sides can be better managed? But number 1, can be taken both ways. Why not wait until it quits working? Perhaps he has a good answer. Maybe its quite valid, such as being able to return to the drug and have it still work, since the cancer hasn't yet evolved a way around it. It was a decision made by a panel of oncologists, but I don't know the weight they placed on rationale no. 2. Maybe it was over emphasized?
Got a call back from the Onc's nurse. She said no. 1 reasoned that we would still have this effective drug, xeloda, in our back pocket, so to speak, in the event things didn't work well with the ibrance. She's going to set things up for a call from the Oncologist so I can speak directly to him about it.
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hey all,
Can't resist coming back though I am over with X.
5 years was a long time.. high dose, low dose..
please avoid supplements like milk thistle, which especially is effective for alchoholics, not MBC gals.
No dairy with lean protein.. no milk EVER!
Take drug 12 hrs apart exactly with food. Take stomach pills each time, strong ones.
MOs get tired after a while from too much questions, trust med reports and science
Never ever green tea, I remember
Yoghurt, kefir and alike can be consumed as snacks.
HFS can develop not only on hands/feet.. ı had them on my face.. lotion up! Sebamed/Nivea Q10 eye cream did wonders to me.
Rest! Every afternoon. In time you may develop edema on ankles.. put up feet whenever.
When you feel OK, is not time to do housework, it's for rest time. DELEGATE.
My 12 year old and DS never let me do stuff..
take shower regularly. If possible ttwice a day (there you go, the itsy bitsy energy alreday gone ha ha )
Water not just drink it, get in it!
No Sun, ever. Shade is ık, you get d vitamin that way too.
Wonder pill does good and harm.. watch the KIDNEYS!!!!! And check for heart condition before therapy, if risky use heart pills as I did..
) Lymph system is the high way of c-buggers, I keep saying this over over and over. Stop yogi etc activities, stimulating the lymh system. Walk, run, swim, that's more than enough.
ALL IS DOC ADVICE.
Agh, the more you fly, the more you take risk with lungs.. not worth it. Drive
Hugs
Ebru
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dear Husband,
MO switching chemos do have sound rationale. Navelbine/vinerolbine is another chemo not losing hair (administrred IV in the states) maybe that will cheer you all up.
There are many factors MOs take into consideration, my big gun was Taxotere which we quit while working.
Xeloda is definitely worth saving in the pocket!
Btw please visit a psychiatrist for regular mood & anxiett pills.. her sleep is important. This is a must, not a luxury. Chemos disturb the sleep/ resting function.
Hope for better:)
Ebru
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Re not thinking of Xeloda as chemo: In some ways, yes, X is just another pill, and that is how I am speaking of it to all but two people. And I am not afraid of chemo per se. I was quite confident and cheerful on Taxol. But there are two things that make this harder. First, my onc and I had thought I could get a couple more years out of hormonal therapy, so I'm not ready for the feeling that this could be the beginning of the end. Second, if you gave me a list of chemo side effects, the two most terrible to me would be hand-foot syndrome and neuropathy because either of those can steal my joyful dancing from me. I would much rather go for IV infusions and lose my hair again. But no, it has to be the drug most likely to wreck things for me. I'm sorry to be so un-cheerful right now. I'll find my balance again. Thanks for letting me vent.
So here is the saga of the prescription. My onc said I could probably start X in a few days. So I wait for the nurse to tell me we are good to go, but there is no message. I am trying to be patient and not bug her, because she is awesome. Finally on Monday I call the pharmacy, and the lady tells me they are waiting for Medicare. I tell her I don't have Medicare! I hear her typing and she says they can ship. I ask when they received the order from my nurse, and she says it was last week. How long were they going to wait to call me?! And they can't ship until tomorrow (even though I am calling early enough that they should be able to ship today). Mind you, I am feeling something amiss in my liver the whole week. I request morning delivery and temperature-control packaging. So Wednesday morning I keep watching for the truck, and finally I call the shipping company. Lots of time spent on this, and in the end I get the package in the late afternoon, with no temperature-control packaging, eight long days after stopping my other meds.
The good news is I have taken two doses and feel fine.
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Sheltand, I understand what you are saying, hugs. Glad you FINALLY got your meds, what a pain! Hoping you can continue without bad SE's.
Husband, may I commend you for being such a caring and supportive spouse! It should be the norm, but unfortunately is it not. So many women suffering thru this without husbands emotional and/or physical help. You rock!
I just got back from appt with my MO, after only one cycle, my liver#s are up (I don't have mets in the liver), and my TMs are up. I know this can all change, praying it works out! And I must say, I love my MO. He always discusses everything with me, and gives me all the options, and let's me make the decisions. I've had him since my original BC Dx. Today he proved himself again. I asked about getting his notes from medical records, (because my ex DIL works for a UCLA Onc, and is having him go over my case), he said "no problem, that I should do whatever I want or need to do" because "this is all about you!" And he said if the other doctor has any recommendations, just let him know. Love him
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Mimi, I hope your liver #s going up is just merely the Romulans getting pissed off because the Enterprise is shooting photon torpedoes at them 😉
My onc says it usually takes a few cycles to see whether X is doing its job or not. Another thing I learned is that X only kills the little buggers as they are starting to divide in their natural life cycle. So your numbers could be residual from before your first cycle. X continues to work even during your off week.
Since you've already had other lines of tx, I don't think your BC is totally chemo resistant yet. I'd give X a little more time to work. Some of us have had really great results on X. My liver, pancreatic, adrenal, kidney, bladder and abdominal wall mets all stabilized on X. Some even disappeared.
My bone mets....well, that's another story. I had some bone progression on last scan, but MO said, "I'm more concerned about keeping all your organ mets stable. Bone mets won't kill you [they'll just make your life miserable], but if your liver, kidneys and pancreas mets keep growing...well, we don't need to paint a picture, do we?" So I'm sticking with organ mets stability for now.
Wishing you peace and patience as you give this a chance to work.
P.S. My liver #s went WAY up right after my very first cycle, too. As a matter of fact, they more than tripled and then they went down.
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Hi all -
Got the scan results scan results for my wifetoday.
Bone scan shows stable disease.
Liver CT shows -
"Increasing size of dominant hepatic segment 2 lesion with a new lesion noted in segment 5 concerning for progression of disease."
Onc is telling this "may be" progression and has recommended PET scan to better assess it.
I am failing to put all the pieces together here. My wife's tumor markers are steadily dropping. So not able understand what's going on. Any words of wisdom or advice will be greatly appreciated.
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Lmwl, my onc says sometimes tumors swell before they shrink. Dropping TMs are a good sign. Hopefully the PET will add useful information.
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