All about Xeloda
Comments
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Dianarose--
In response to your question about out-of-pocket costs-- I do pay a co-pay out of pocket for my Xeloda.I was told there was no patient assistance (as there was from Pfizer for Ibrance) to help with my co-pay. I earn too much to qualify for most of the other patient-assistance programs. But would love to hear from you about options I may have.
Thanks so much for even putting this out there!
Elizabeth
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lmpk: Thanks for your reply. Well, I'm on day two today and yesterday afternoon I ate some salsa and chips. I have very little taste sensation from the original chemo back in 2006, so I wanted something I could taste. That came back up about 2:15 AM. I have been bloated like the Hindenburg since I stopped the Afinitor. Nothing seems to make a dent in it, literally! Not even Gas-X. This morning I had a hard time eating a piece of toast so I made some Lipton Chicken Noodle soup in the box. Got some of that down and took the X. I have heartburn now, which I rarely have and pretty much feel like I've been hit by a big truck. Not an auspicious start to a new treatment...:(
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Hey Proud, that is awesome that X cleared your liver mets! I hope we all have such good results!
I don't always eat a lot for breakfast (or dinner). I seem to ingest the most food in the middle of the day. Now I'm wondering if that lack of food is contributing to my SEs, which are mostly diarrhea, but also some HFS. Should I try to eat more? Fats, protein? Miao, you are so good at responding to what your body is telling you. I wish I had that sensitivity because I can tell that it is helping you a lot to manage this crazy disease.
I did a twelve mile bike ride this morning and was the last in the pack. Stamina seems to be dwindling.......
Donna
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Hi all,
I have unfortunately some disgusting news to share. We all know cancer is big business and that our MOs profit from the chemotherapy drugs they prescribe to us.... and the rate failure of their therapies is 99% but this is a new low even for them.
Top Cancer Researcher Fails to Disclose Corporate Financial Ties in Major Research Journals
ProPublicaA senior official at Memorial Sloan Kettering Cancer Center has received millions of dollars in payments from companies that are involved in medical research. His omissions expose how weakly conflict-of-interest rules are enforced by journals. Read the full story
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I thought Trump was the most appalling thing happening but this just plain saddens me.
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EV, I have assistance with my Xeloda and my Xgeva, costs me nothing.
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Checking in as I finally have news. My post Y90 MRI revealed that the mets in right and left lobe of my liver have been shut down. As the Y90 was done in the right lobe, it's the assumption that Madame X took care of the left lobe(fewer mets there). I am thrilled, of course, but know that the shoe will drop eventually. Until then, I will ride like the wind.
SE's did intensify this last month with the hand and foot and GI issues. MO has given me an extra week off and allowed reduction to 6 pills.
My love to each of you in Xeloda land, Mary Jane
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Hi, goldie0827--
Would you mind sharing the source(s) for your assistance for Xeloda? I'm on Zometa as my bone agent so I don't need information for Xegeva (although someone else might be interested in that information...)
Thanks,
Elizabeth
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An advocate at my cancer center did it. So not able to get any information right away. Also, I am leaving Tuesday until the following Sunday, camping.
Ok, I found some of my information. It's Patient Advocate Foundation. www.copays.org
Phone is 866-512-3861
Fax is 757-952-0119
421 Butler Farm Rd., Hampton VA 23666
GOOD LUCK!
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donna, thanks for the thoughts on .......i forget whzt now..! Dang cant remember shit!
My sister just called, firxt time in long time, it felt good to her from her
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here's a little bit of humorous codes we can use on this sit....enjoy
TEXTING CODE FOR SENIORS
Teens have their texting codes (LOL, OMG, TTYL, etc.). Not to be outdone by these little SNK (snot nosed kids), now, finally we long-suffering seniors have our own texting codes! Although most of us are not even close to senior status I thought you should know their codes in case you get one from a senior.
Texting for Seniors as follows:
ATD - At the Doctor's
BFF - Best Friend's Funeral
BTW - Bring the Wheelchair
BYOT - Bring your own teeth
CBM - Covered by Medicare
CUATSC - See You at the Senior Center
DWI - Driving While Incontinent
FWBB - Friend with Beta Blockers
FWIW - Forgot Where I Was
FYI - Found Your Insulin
GGPBL - Gotta Go, Pacemaker Battery Low
GHA - Got Heartburn Again
IMHO - Is My Hearing-Aid On?
LMDO - Laughing My Dentures Out
LOL - Living on Lipitor
OMMR - On My Massage Recliner
ROFL..CGU - Rolling on the Floor Laughing...Can't get Up!
TOT - Texting on Toilet
TTYL - Talk to You Louder
WTP - Where are the Prunes
WWNO -Walker Wheels Need Oil
GGLKI - Gotta Go, Laxative Kicking In!!!!!
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Miowmix, finally a LOL moment today.
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Aiming to please Marianelizabeth....I personally been laughing all afternoon and as my friend's respond by using the various codes I keep.LMDO
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i need those codes. My brain is just too slow
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I have an extra bottle of Xeloda if anyone needs them. It was never opened. I know some of you ladies end up paying out of pocke so pm me if you would like them. Wish I was still on them. Dam stupid cancer!!
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Hi, Dianarose-- so sorry to hear that you have to move on from Xeloda...I'm sending lots of positive energy that your next med works wonders for months and months and months to come. I'm just starting Xeloda and hope desperately that it works for a long while for me...I have to see my daughter graduate from High School in 3 years and would love to be alive to shepherd her through college for another 4 years after that....
I sent you a PM about your Xeloda....
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well filled a script for my blood thinner this morn, ,looks like i am out of the donut hole, noy sure if i should cheer or what nut least the meds are not so scary for now.
Did my extra infusion this morn, upset tummy so now add a new med for that, well least i am home. I need to call dentist as mouth hurts
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So just a note to say : I just got out of the hospital from taking three days of Xeloda! I have congestive heart failure induced by xeloda! I'm told by an onc in my group it is very rare.and he was doubtful that this is the reason I was there,but it was founded by using many test sure enough it is what I have
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Diana, going to miss you and totally agree....damn stupid cancer! But I would throw in some other cuss words as well. Wishing you all the best. I'm pretty sure mine will be changing here soon, after I have my next labs or scans in November.
Wow Mimi, that is a bit scary. Glad you are ok. I must say this is the first time I have heard of someone experiencing that. What was your dosage?
Just got back from a camping trip in Moab Utah. such a gorgeous city in the US. Going back in about 2 weeks when my daughter arrives from the VI, where she lives.
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Wow Mimi, that is scary! Like Goldie, I am wondering what your dose was?
Dianarose, I'm sorry to hear about your progression. I hope that your next treatment treats you kindly and lasts a long time.
Goldie, Sounds like a great trip! We would like to go camping there with our horses! We are hoping to get out there next summer. Would you share some pictures?
Had blood work and met with my Pn Friday. My blood loves Madam X! I haven't seen such great numbers since before Ibrance! However, my Dh described my se's on days 4 - 6 and she said they were unacceptable, so she lowered my dose to 2/2. I sure hope that its not a mistake. I want a long time on this drug! Believe it or not, I find it easier than the l/L. I like being able to know when my good days and bad days are.
Hugs and prayers,
Claudia
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Big, taking your horses to Moab would be awesome, however in the summer their temps are in the 100's. Spring and fall are the best times, but also the busiest. Spring time they have "jeep jamboree" and it's super crowded then and camp sites hard to come by, if at all. We don't do campgrounds, we do dry camping, but even those are full.
I have to post from my phone, as that is where the pictures are, and they don't do it justice at all! What dose were you on and for how long? Not sure the SE's are able to avoid, and they seem to be accumulative. I've been on it for 3 and 1/2 years. But also some have subsided, especially the fatigue and I have no nausea. I take 5 pills a day (500 mg ea.)
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Pics don’t do it justice. Google Moab Utah and go to images.
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'BPA-free' plastic was supposed to be safe. Not necessarily, study shows
National Geographic
Alternatives to the now infamous compound keep popping up. But researchers aren't convinced they're any better for us. Read the full story
This obviously means that since the 70s we have been exposed to estrogens even when we thought we were making safer choices.
What is BPA?
Bisphenol A, or BPA, is a common building block in resins and some types of plastic. It's what's known as an endocrine disrupting compound. In the body, these chemicals can act like hormones or disrupt normal hormone functions.
"What's kind of disturbing about this is hormones regulate almost everything in our bodies," says Johanna Rochester, senior scientist with the nonprofit The Endocrine Disruption Exchange, who was not involved in the work. In the case of BPA, concerns surround its estrogen-mimicking effects.
In the past couple decades, research on BPA has exploded. A slew of studies document negative reproductive, developmental, and metabolic effects in a menagerie of wildlife— rhesus monkeys, zebrafish, nematodes, and mice. Even human studies have linked BPA to a range of health issues.
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EV11: I have assistance directly through the specialty pharmacy, Briova, where I get my Xeloda. I also had assistance from them for the Afinitor I had previously. I am retired so my income is undoubtedly what qualifies me for the assistance, although I don't know what their income qualification guidelines are. I have been told by multiple medical benefits people that there is a lot of assistance available, you just have to have someone familiar with that side of things to research it and come up with the programs. Hoping you find some help for the co-pay.
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Goldie, your pictures are beautiful! I have seen other pictures on the internet and it does look like a stunning place to visit. It sounds like fall would be the best time for us with the horses. We almost always dry camp, as very few campgrounds that allow equestrian camping have any type of hookups at all. The only criteria that we have is that there must be non potable water for the horses. Even with that said, we are looking into buying a water tank to put in our trailer so that we can carry our own water just in case. Currently with our motorhome, we have enough water in our water tank in it to care for us and the horses if need be. However, we are hoping to eventually go back to a living quarters horse trailer. We used to rough it with the horses, we had a 4 horse trailer with an 8-foot dressing room and we would set up our blow-up mattress and have our coolers packed full of food and drinks and our outdoor kitchen and all of that stuff and it was great. But we found two problems with it, one no furnace, and it can get pretty cold in those metal cans with no heat. We also found keeping food at the right temperature is difficult in coolers. We've been bought a horse trailer with living quarters unfortunately, it was all electric, which we thought wouldn't be a problem, except it was. Again, we found no LP furnace to be an issue, no gas water heater to be a problem, and no dual fuel refrigerator was a problem. DH insisted that we go to a small motorhome which worked great when the group of friends we we used to Camp with all went together. However, Life Changes, and people have drifted away slowly either getting out of horses all together or stopping camping or whatever and our little group has broken up. So now we're finding having the motorhome and the small horse trailer to be an issue when we want to go camping out of state and we want to go see the surrounding areas. But back to dry camping that's pretty much all we've ever known, it is a rare occasion when we have hookups of any kind and last October when we went to Tennessee we actually had full hookups and hardly knew how to act with it all!
She lowered my dose from five a day 2 2 A Day. I was not complaining about the side effects, my DH was. She asked me if what he said was true and I said yes and she said that I should not have to put up with that. I'm not really feeling good about this change and thinking that I'm going to revisit the discussion at my next visit. The side effects of been mostly manageable, in fact I firmly believe they are far more manageable than my side effects that I had on I/L combination.
We are leaving next week to go up and see our grandkids, then we are going to drive up to the New England states for the Fall Foliage change! We are really excited about this trip. We haven't seen our grandkids since June so we can't wait to see them! Then when we get up to the New England states we are meeting up with three of the women who I have met on these threads! I'm so excited to be meeting them!
Have a great time camping with your daughter, you will have to send us more pictures!
Hugs and prayers,
Claudia
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Claudia, I am so jealous! I grew up and lived in Massachusetts for my first 28 years but wound up in Southern California, where there is no such thing as a Fall season. I miss that the most, still, after 35 years of being here. Enjoy the heck out of the gorgeous colors!
I wish I could predict how each cycle of this med would go. The side effects are unpredictable for me. This week, I could barely take a step because my feet hurt so badly. That hasn't happened since June. Also, I went from diarrhea to being blocked up. It's an adventure for sure. I am trying to downplay these SEs to my doctor, because this med is working for me, and I want to stay on 3/3.
Donna
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Mimi scary isn't the word. So sorry about you and Diane.
Goldie and BigB. Primitive camping with horses! I haven't done that since high school. You all are wonder women!
I'm on 1/1 with no break. Great scans three times over.
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Hi Claudia,
It was great meeting you yesterday. That was quite a biology class. I picked up some of it and am going back and looking at my original biopsy. One of my concerns about going to this support group was that there would be women (like that lovely young woman we were talking to) just starting on this journey. I did not want to (but i think i did) say something that would frighten them about their future and this disease. I get so much hope from this community. When i think of my DX in November 2017 which was 10 months ago I had no idea what was ahead. I still don't, but i do know that there are so many of us out here that are living our lives fully. I'm starting to understand that one treatment leads to the next and then another. I had a social worker tell me Monday that our Dr.s never give up. So you go off and enjoy your fabulous trip north. I'll stay connected here and keep focused on living my life fully.
Karen
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Big/Claudia, great camping story. I imagine camping with horses would be a whole different experience. Do you tow a car to do any driving around? Where do live? We have a solar panel on the toy hauler, and there is a generator in it as well. We also have A/c and a heater, so everything we need. Altho small, 21', not including tongue and all, it's all we need.
Zils, I'll take the "Wonder Woman"....LOL. I too tried the 1/1 dosing with no break. I liked it a lot! But it didn't work for me, in fact nothing is really working for me right now. My TM's have been creeping up for the last few months.
Donna, when I did 3/3 pills I got a horrible itchy rash on almost my entire body. So it's 2/3 for me. My feet are pretty bad too. Especially around the heels and at the arch. Heels are cracking/peeling. The skin is so thick and hard. And the big toe nails are lifting bad. More than half of nail is gone, just glad it doesn't hurt. But not too pretty when wearing flip flops or sandals.
Meeting BCO sisters is awesome. I have met at least a dozen.
Karen it is a journey for sure. Had I known I would still be here 10 years later, I would not have worried so much. 10 years of "cancer" running through your brain several times a day. When I reached 6 years, I finally was living without thinking of it, thinking I've made it! Then BAMM, it went to my bones. So now I am back to thinking about several times a day, for the last 4 years! Oy vey! I'm on my second treatment plan.
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Miaomix,senior text is priceless.
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