All about Xeloda

[Deleted User]

Denny

yay For NED such great news

My largest tumor is almost 5 cm. The others are almost 3 and 2cm. They are all in the right lobe so if I get shrinkage I can get them out. Major surgery but if it goes like the breast cancer I could get many years of NED

I will ask about gemzar. Doxil was mentioned by my local as a choice. It is a little frustrating but glad to know they are keeping a close watch. i am her2- but she is checking again

Dee

JoynerL

YAY!!!! Great news, Denny!!

denny123

Dee-sounds good if there are all in the right lobe. My biggest was in sections 7 & 8. They did laparoscopic surgery on me and that was in 2004. I was a little crampy and had right shoulder pains (referred from liver) for a few days. No biggie....

Doxil might eventually be an option for me and apparently, from what I have read, it isn't too bad. Gemzar is easy.

Topacio

Hi everyone....

Congratulations in NED, Denny

Hope everyone is doing good.

I have a questions if anybody had similar results like mine: the following is the result of my last MRI, the doctors didn't mention anything new or talk about it but I a bit concer.

". Again seen is the enhancing right frontal lesion. The overall size is similar to the last prior but the periphery shows greater enhancement and spiculation. The edema in the adjacent brain is worse.
The enhancing component measures 1.3 cm."

Thanks .

meja

Hi,

I am new to this Xeloda thread. I started on Xeloda and Herceptin in September (2 weeks on 1500x2, and 1 week off), and just received promising scan results this week (bone mets stable and sclerotic, and a small met in my left thigh muscle, which was radiated in August is no longer visible).

Side effects on this treatment are manageable; the most bothersome is the fatigue that hits me in week 2.

I have a question, - after starting Xeloda, I noticed some new pigmentation of the facial skin and hands. I see this as a minor side effect, just curious as to whether anyone else has experienced this ?

Take care,

Meja

nicolerod

Congrats Denny!

goldie0827

Denny, I couldn't be happier for you!

Topacio, I think a call into your RO is in order.

Meja, in the beginning I had fatigue, but don't anymore. As for the pigment, is it brown spots? I've always had freckles, but as I got older, you really couldn't see them. Not the case now!

Kattysmith

Denny, that's wonderful, you goddess!

snooky1954

Congratulations Denny! I've none been on Xeloda for three months! Side effects really aren't bad. Not much energy. But Praise God no HFS. Onc apt this a.m. Hopefully some scans will be ordered so I can know if it's working or not.

Tapacio. I agree with Goldie, call your Dr. My NP told me at the very beginning that if I noticed the creases in my hands getting red or brownish that she wants a phone call. She said we'll stop this before it starts? I think she was talking about hfs.

Goldie, I haven't been keeping up on the threads like I used to. Did I read that you are stopping Zeloda?

goldie0827

Snooky, I won't know until I see my onc Tuesday. I have labs today, nuclear bone Monday and him Tuesday. He was considering changing my meds because of the drastic rise in my TM's. However, I have no symptoms, no pain. So it's tough to decide. Stay on X, or move on to something else. Also, I don't know that you can stop the HFS. This drug weeps through our hands and feet. My hands are very red, same with my feet. Certainly tolerable, but not very pretty!

snooky1954

Goldie, who need pretty? Speaking of pretty, in the last picture of yours you looked like a Red Hot Moma! Are you sure your 62? LOL

goldie0827

Snooky, no I'm not 62, not yet. Currently 61, born in 1958. But thanks for red hot momma!

meja

Goldie,

Thanks for the reply, - good to hear that the fatigue may get better.
Yes, the pigmentation looks like freckles across the nose and cheek bones; and as like you, mine had really faded since childhood, but now they are back! Well, I guess I should just embrace them :-)

Kattysmith

I'm on week 5 and am starting to get soreness from HFS - it's sort of like my feet and fingertips have a sunburn. My feet are pretty comfortable as long as I have my sketchers on or my slippers. We have wooden floors, no carpets or rugs, and I normally walk around the house in socks, but that hurts too much the last couple of days to walk on a hard surface like normal. I'm also having serious weakness/ fatigue and my appetite is way down. I have to say for the first time, I really feel like "a cancer patient"...I've been so fortunate the past 4 years compared to most, I know. Luckily, I'm a tough old bird and will keep pushing on and enjoying what I can when I can!

My next bloodwork is on 12/3, but I don't see the doc until the 20th. I guess if the SEs worsen, I will see if the NP can see me on the 3rd and maybe I'll need a dose reduction - I'm on a high dose.

Hope everyone has a good weekend! Today is my son's and DIL's 14th wedding anniversary!!!

nicolerod

Katty sorry you are having side effects. What is your dose (I know you mentioned it is high) and what is your schedule 2 week on 1 off?

Kattysmith

I'm on 1500 twice a day, two weeks on, one week off. My week off starts Tuesday. I don't really feel that bad and so far I'm able to work around the side effects, but I just want to keep a close eye on things. My digestion is fine. Doing everything I'm supposed to and hopefully that will keep any deterioration at bay.

You know how it is with a new treatment, you don't always know what's normal and what's a concern as far as side effects. I tend to be an under-reactor, so I have to be careful not to wait too late to report problems.

I hope you're doing much better today!

nicolerod

I am doing better thanks. Thats a high dose. I know what you mean about how it is with a new treatment. I hope things don't get worse for you.

denny123

Thanks for the congrats everyone!

Meja-pigmentation is common. And we should stay out of the sun without sunblock.

Goldie-lol at not 62 YET!! You are still a hot babe. Ahhh to be that young again.... Good luck with the dr appt!

Katty...congrats to the young couple! I am so glad that I have a lot of carpeting. My kitchen floor hurts my feet, so when my feet are bad, I have to wear my slippers...besides my thick socks. Maybe you can go to one week on and wone week off.

Topacio....let us know what the doctor says!

snooky1954

Had my apt with my Onc this a.m. Wanted to relate our discussion of dosage and 7/7 issue.

I've told my story but not on this thread. So a recap Aug 21, I was prescribed 1500 in am 1500 in pm 14/7.

But I had a problem Medicare was messed up (no part and Medicaid would not pay for it.. Yikes! Talk about stress thankfully, the pharmacist at my ONc office agreed to sell me first cycle at his cost. 260 dollars. So, I decided to stretch the pills, inside of 1500 x2 a day, I did 1000 x2 a day. Meanwhile I started my fight against the government to get my Medicare. So, first two cycles I did the 1000x2 with virtually no side effects. Meanwhile (after numerous phone calls , filling out forms ) Medicaid decided to step in and pay for 2mos worth. So since I now had more pills I went up to 1000 in am and 1500 in pm. First cycle not bad, second cycle of this hit me like a ton of bricks on 2nd week of cycle. The fatigue, I basically layed on the couch that second week. I live alone, I have to be able to take care of myself, I was living on canned soup, too tired to cook.

So, then I started reading about the 7/7 schedule. I put myself on that at the 2500 PER day. Hugh difference in fatigue. I had planned to start the original script of 1500 am and 1500pm on 7/7 after todays ONC visit. (last two months, I'd only seen my Nur Prac, not the "main man" my ONC. She knew what was going on. She knows about my co mobilities. When until stress, I go into a depression, the panic starts and I shut down. She said it was fine, I had to do what I had to do.

So, when I saw the ONC this a.m he was not amused when he heard 7/7. ( he also knows about my lifelong battle with depression and how we have to manage it with treatments) He said the 7/7 won't work. He didn't care about me lowering the doses. I said but the St John's Hos trail. He said let me tell you about that trail. And he went on to tell me all the flaws with it. (my brain tuned out and I don't remember what he said) But I caught the end part. He said if that trail was successful Standard of Care would now be 7/7. He said but it isn't because it does not work.

And then he said, forget about doing the original 1500/1500. And he said if you would try this and can manage it this new schedule will be more effective. He wants me to drop back down to 2000 a day (2pills a.m. 2pills pm) but go back on 14/7. Xeloda would be much more effective. If you give it a try but find you just can't cope we'll go to 7/7. I looked him right in the eye and said Dr. you honestly believe 7/7 is not effective? He smiled and shook his head and said I'm positive. So, he's the doc. So that's my new schedule. Fishing around I also said that I read Xeloda only works for about nine mos. Asked if that was true. He said I've had patients on it a lot longer than that.

I don't want to upset anyone who is on the 7/7, just wanted to relate ONE Onc opinion on that trail.

Oh, just wanted to share how flawed out medical system is. My 84 pills which I purchased at cost for 260. had (which my ins paid) patient saved $4,500 with insurance. A hell of a mark up.

Oh and I fought the government and I WON. Yeah me. Medicare Part B is now active.

Kattysmith

Snooky, it is just obscene the insurance hoops we have to jump through to get what we need to survive. I'm on Medicare too but luckily I had Part B so there was no problem getting approval.

Like you, the fatigue this second week of the second cycle has been crushing. I've still been able to do some things, and I am married so I have someone I can boss around, er, I mean to help me out. We are planning to go for lunch and light shopping at a huge Middle Eastern Costco type market today with my sister-in-law , but I will have my mother-in-law's old walker with a seat, so they can push me around on that if I get too tired... which I will.

I'm on the traditional cycle schedule and I do remember my doctor mentioning that he could adjust the dosage but not the schedule when I first met with him and discussed xeloda ( after reading up on it in this forum). He is a 40-year resident at MD Anderson, so he is a little old school but extremely knowledgeable and experienced without being arrogant about it. In my case, he wants to hit my liver mets as hard as we can without wrecking my QOL. I am on board with that. He's scanning me again pretty early on December 20th rather than January, because we both know that Time's a Wastin if this treatment isn't working.

Wishing you all the very best! I've read many of your posts in a different forum where I lurk from time to time!

It's chilly in Houston this morning and I am sipping coffee on my couch squished in between a bunch of cats and a chihuahua.

goldie0827

Meja, my freckles cover my entire face, not just across the nose! You know, those with dimples were poked by God and telling them they are special. Us with freckles were sprinkled!

Katty, get yourself some memory foam slippers for walking around the house. I don't have carpet either, but just socks are fine with me.

Nicole, glad to hear you are getting better.

Denny, and I feel even younger. Thank you for the compliment.

Snooky, I don't think I thanked you for your kind words. It really bothers me when someone is nice to me or says something nice and I forget to say thank you....how rude! All of these drugs are over the top expensive, no wonder our insurance rates are sky high!

nicolerod

Snooky if you look at MSK..they do the 7/7 schedule and had an effective trial with it. My MO prefers the 14/7 but I asked for the 7/7 and she said ok. There are people who do the 7/7 and are NED so I have to disagree with your MO. If the 7/7 didn't work NO ONE would be able to be NED on it but he is your MO and if you have 100% confidence in him for what is right for you then you should listen to him.

Snooky here is data from pubmed and MSK suggesting same effacy with 7/7 schedule:

https://www.ncbi.nlm.nih.gov/pubmed/28721374

and here is from MSK: the MSK model actually says when doing it 7/7 it allows for higher dosing as well with less side effects:

https://www.mskcc.org/sites/default/files/node/2716/documents/1186-xeloda-norton-aacr.pdf

I know my MO is very very involved with the most recent research and trials even trials that are NOT from the facility she works in and she wants to be aggressive with my treatment so to me, there is NO way she would have even agreed at all to 7/7 if she even thought there was a chance it wouldn't work. I also took with me everyones thoughts and warnings from Ibrance which is WHY do they start at the HIGHEST DOSE??? Thats why if 7/7 isn't working we can always go up....to 14/7. Just my thoughts but I know there are people on 7/7 that I have spoke to on here and facebook that are stable.

nicolerod

Actually lets ask it here again so we don't have to dig back through posts....

Who is on the 7/7 dose of X? What mg are you on and what is your status? Stable, NED?

meja

Goldie, I also think the pigmentation is spreading to other parts of my face, so the 'sprinkling' continues. I loved your picture; good luck with your upcoming appointment.

Denny thanks, it is wintertime here in Denmark with very little daylight and almost zero sunlight, but we are planning to travel to the Canary Islands for Christmas, and I will definitely use sun blockers there!

Interesting discussion about doing a 7/7 schedule vs. a 14/7 schedule; in Denmark only the 14/7 schedule is used; if SEs occur the dose is decreased - I think I will do some more research on this subject.

Have a nice weekend everybody,

Meja

leftfootforward

I still follow this thread even though I have been off xeloda for a year now. I like to keep up with you.

I was on xeloda for 5 years, 14 on 7 off. I lowered the dose once from. 3500/day to 3000/day.

Continued well being everyon

goldie0827

LLF, good to hear from you. I'm working on 5 years! I hope your current treatment is going well.

Kattysmith

LFF & Goldie, five years, wow! That's an impressive run for a treatment.

Goldie, I do have some great squishy dearfoam slippers that I live in at home. I've been wearing them for years in my feet love them! As soon as one pair wears out, I order another!

denny123

Wow Snooky! What a run-around! I started out at 2,000 a day at 14 on, 7 off. But as soon as I presented with red and sore feet, my onc lowered me to 7 on and 7 off.

My chemo nurses are great, because if I have any problems, they suggest that I take a break for a few days. But of course they consult my onc.

I have been NED for 22 months on X and Herceptin, which is very good considering that I am almost 18 years Stage 4 MBC de novo.

Meja---interesting that you also are having winter. I get confused about the other countries and their seasons. So I guess your brown spots aren't because of the sun.

I try not to wear slippers since I am capable of tripping on a flat floor. I did that 4 years ago, tripped walking down my hall, tried to avoid falling and tore my meniscus.

meja

Leftfootforward and Goldie wow - 5 years ! And Denny 22 months. Thank you for sharing information about your success on this treatment.

Leftfootfoward, I see you are also Her2 positive, where you also on Xeloda and Herceptin in parallel ?

leftfootforward

Mejia- first it was paired with tykerb. Then I believe it was paired with herceptin but that had to stop as my heart function decreased. Then I argued to take it by itself so for about 2.5 years I was just on Xeloda.