All about Xeloda
Comments
-
I went to my trainers today and felt so bad. Struggled to get through workout. Then I did the math. Day 10 of 14 on Xeloda my low point usually. Explained a lot. First cycle on after 4 week break. It got to me. I can actually feel the difference in Xeloda fatigue vs fatigue of chasing 4 kids around. It's real. Keep hanging in there ladies.
0 -
I haven't been on here awhile, but Babs, I almost was at my breaking point with my hands and considering lowering my dose this week. My two weeks on are ok with tolerable side effects and then the week off - it is crazy painful with cracking, peeling and tenderness with the hands and feet and of course the bathroom issues for the first couple of days. You would think your week off would be heaven. I have been on 4000 mg since November, but I'm going to try your cream combination before I lower the dose. I still use the Vicks VapoRub on my feet that seems to help. I also started swimming for 40 minutes again and the coolness of the water also makes my feet feel good. My Zen! I picked up the cream and am waiting for the "foam" to be approved by my insurance.
My CA 27/29 number is 32 and in the last 2 months, moved up a couple of points. The 12 lesions in my spine and other bones are not active, but my left arm, liver and neck lymph node have increased in intensity and decreased in size! What??? My MD doesn't seem to be worried. Interesting that most of your MD's don't pull the CA 27/29. That is all my MD uses. He also wants me to do the new NCI-Match Trial that President Obama has put aside millions of dollars to study mutations as I am BRCA 1. I already did one study in Alabama for 4 months with 2nd generation Ibrance and CK111 and then the pesky cancer popped up in my liver and neck lymph node.
I am going to Germany in August, so will have scans done before the trip and decide on the trial when I get back. I am hoping your cream combination works! Congratulations to all of you on sticking with Xeloda, and with NEDS. I am hoping I can stay on it a little longer since I know what to expect! Have a great weekend to you all and stay cool. Sticky hot next week in Minnesota.......
0 -
Needing some encouraging words tonight...any long timers on Xeloda out there ?
0 -
stilts- I started Xeloda in Dec 2012 with extensive liver Mets and brain mets.
I'm still on Xeloda and NED. Have been NEd for all but one liver tumor which was rejected in July of 2015.
Not sure if that's long term but I'm doing well.
Hang in there
0 -
Hello everyone, been away for awhile...trying not to "dwell" so much. However, time to "dwell" again unfortunately. I need some of your wonderful opinions. I just started Cycle 8 of Xeloda-my choice to continue. When I started X, my TM's continued to rise until my 3rd cycle, after which they started falling. They continued to fall until I finished Cycle 7. Immediately after finishing Cycle 7 I had blood work done and they had risen. I had to be off for 2 weeks instead of 1 because the HF was extremely bad but still came in each week for bloodwork to check TM's and both times they had risen even more. After my break, at my Onc appt, he says we need to discuss what to do next. Continue the X or move on? Hope I haven't lost anybody cuz here is where you come in
I was just a little freaked out to be, again, moving on to another drug! I only lasted on Ibrance 2.5 months. So, I said let's give this a little bit longer if I'm not in major danger. My CT had just come back too and we were discussing those results. Little bit of progression (in mm), no new ones, but none disappeared. I am really just heart broken that it's working so great for so many and some have been on this for years. Has anybody had anything similar happen with the whole up and down thing w/the TM's? Am I crazy to think they would come back down again? I don't know how these drugs do and if that's ever happened.Also, wanted to mention that I have been using a lotion that I got off of Amazon called Topix Therapeutix Urix 40 that is 40% urea cream that I like pretty well. Made in the USA.
0 -
Nicci,
My markers haven't done this bounce. Took 2 cycles or so to see them headed downward. This month, flat. But flat at a number I can absolutely live with. My scans also showed less activity in all the bone mets. So, I fear I am not a good comparison.
I think by the time we are on Xeloda, stable is a good goal, and it does sound like you have that. For me, I would be weighing the HFS [i.e. quality of life] vs. a drug that is keeping you stable but not a home run. This is also the "devil you know" quandary, but own pet name for this endless dilemma that we face.
I think this is a great place to use as a sounding board, as you weight the pros and cons of each choice.
*susan*
0 -
That is awesome LeftFootForward that you have been on Xeloda since 2012. That is very encouraging. Congratulations. Since that time, how have you been doing with the HF symptoms? NicciJ - it also took a few rounds for my numbers to start going down and now starting to creep up again. In the middle of my sessions, I also waited it out. My MD last appointment said "we haven't even scratched the surface of new meds" so there is always hope. The MD in Alabama (study) isn't even concerned about the slight increase. So I'm going with his optimism. Goldi - how is the medical marijuana going? I also have the high CBD oil and use it at night to help me sleep. Stilts are you with MOHPA - my MD is with the Fridley group. Hang in there, we can do this.
0 -
My mother died of breast cancer when I was 14, leaving 5 of us under the age of 16 in 1974. She had breast cancer for 1.5 years. I hate to think what my poor mother went through in those days - radical mastectomy and chemo. I'm sure they didn't have the "helpful" drugs like Zofran, Compazine, etc. I have had breast cancer since diagnosed in 2006 - so think of how far the medical community has come. Every year, new drugs come out - there may be a golden ticket someday. That's why I may do another study...for my daughter and grand daughters. My mother's sister was also diagnosed with peritoneal cancer (form of ovarian) in 2006 and was given a <5% survival. She is still here and has had recurrences, yet still active and in good spirits. When I was diagnosed in 2006 and 2014, I had a lot of despair, and reading these threads with so many survivors, there is HOPE! Hang in there and thanks for sharing your ups and downs and for the great support for all.
0 -
Mediclisa, reading your story gives me hope. You are truly an inspiration and glimmer of light that I needed.😎
0 -
NicciJ - this is such a roller coaster, although not fun! I have been on Xeloda since May 2015 and have had my TMs slowly but surely declining each month. Then when my HFS was so bad in May 2016, I took one extra week off (I'm on a 7 day on / 7 day off schedule) and my TMs went up 100+ points at my next appointment. I was so discouraged! I started up again after my extra week off and one month later, my TMs decreased 62 points. I still have quite a ways to go on my TM # but my oncologist said he looks at trends, not just each month's TM number, so still on Xeloda. I would like to stay on this for as long as I can, as it has been the most manageable chemo I've had so far. I wish you the best of luck - please keep us updated!
0 -
leftfoot. Wow !!! Super encouraged that you've been on X 3 1\2 years. Impressive. Thanks for posting. Love the positive tx.
0 -
Thank you guys for all the responses, I really appreciate it. This board is really great! Great story mediclisa! Very inspirational! So sorry you lost your mother at such a young age though. I think I will stay on X for awhile, or at least as long as my feet will allow it. They have started to swell terribly when they are at their worst and Onc doesn't like that. I have to wear slippers to appts! Very painful! Anybody get to that point?
0 -
nicci. That sounds so painful. Bless your heart. Ouch. No experience my self but know someone will be around soon who does have experience. How long have you been on X?
0 -
Lisa, I'm not sure how the MMJ is working. I get labs done on Friday. I had posted more about it on page 199. I do get a little loopy. I don' think I would drive at this point. My hand and feet continue to do well, although still some painful cracks on the heels. Also using a MMJ product on those.
0 -
Nicci, swollen feet sounds terribly uncomfortable! Antihistamines and/or steroids may help. Has your doctor talked to you about those options? I hope you can find relief
0 -
Happy Sunday, All
I have not posted in over a year. I started Xeloda May 2016. 1500 2X daily. 14 on 7 off.
Start 3rd cycle tomorrow. I am confused. So many of you d/c'd Ibrance and like me, are now on the Xeloda. How are you doing on the Xeloda? Is it working? I have felt the Ibrance needed to go back where it came from. I suffered horribly...neutropenia, exhaustion, vertigo [ear infection], etc. I just read Xgeva + Ibrance (June 2016) causes all of these plus heart lining infection. I was nearly laughed at when I reported these issues, hospitalized twice. Vertigo so bad I couldnt open my eyes.
I apologize for the rant, but I hope this doesnt happen to others. I am hopeful re the Xeloda. Still taking the Xgeva.
Curious why Ibrance seems short lived, or is that a misconception.
I started this journey 2004. BC +1 lymph node, aggressive. Rt side breast sparing lumpectomy surgery: doxycycline, + the 2 other chemos 6 mos.
6 mos extended Radiation.
2012 met to bones, liver, lungs.
2012 Faslodex, Xgeva, Arimidex
2015 Ibrance, Letrozole, Xgeva
05/2016 Xeloda 3000 mg daily 14 on 7 off.
I have been blessed with all of these treatments, rare if any problems, except the Ibrance. Horrible.
The liver mets doubled with the Ibrance.
Bless each and every one of you amazing ladies.
Elle
0 -
Elle,
I too did not thrive on Ibrance. Others have done better, and for longer. However, for me, I wasn't sure that my body could handle Ibrance for much longer. As it happens, it wasn't working, so here I am on Xeloda. My latest scans show reductions; my tumor markers are down. The side effects are not nothing, but I no longer think that I am in a downward spiral. I hope that Xeloda works as well for you.
*susan*
0 -
Thank you for such a quick answer. You said exactly what I thought in a lot fewer words.
I, too, am doing just fine on the Xeloda. You will be in my thoughts and prayers!
Hugs
Elle
0 -
Thank you for such a quick answer. You said exactly what I thought in a lot fewer words.
I, too, am doing just fine on the Xeloda. You will be in my thoughts and prayers!
Hugs
Elle
0 -
Patty, I started X on April the 8th. My feet didn't start in until after the 5th cycle. They were always bright red and tender but didn't start the horrible peeling and swelling until then. They look much better now after my break and tomorrow will finish cycle 8 which was lowered to 4 pills morn/3 night. Both hands and feet did MUCH better on this and only dropped the one pill! Go figure!
JFL, no mention of steroids, but he did say keep taking benedryl while I have the rash. I am not very good with that, however, because it makes me soooo thirsty and I am already thirsting to death with other meds. I already go through 8-10 of the 25 oz. water bottles that I refill everyday! LOL! I do take alot of vitamins and other meds throughout the day that cause me to constantly guzzle water.
Elle, I really just don't get it. I don't understand how one drug can kill cancer cells for one person and not do the same for another. Makes no freakin sense to me. So many people are doing great on the Ibrance and loving it. It didn't work for me...2.5 months later, here I am on Xeloda. And fighting to stay on it!
BTW, I am in awe of you guys that are on the 14 on/7 off schedule!! I don't know how you do it!! Super Troopers!!
0 -
Bev got the Differin, and its covered by her insurance. Good thing, it was expensive. $130 for a tube. I will report back in a few weeks on whether it is working or not. It could take 1 - 3 months to get the full benefit.
0 -
Great news, Timothy! I can't wait until you report back on how Differin is working.
Babs, another question for you - did the dermatologist discuss risks associated with long-term steroid use on skin? I recall that steroids can thin skin over time. Just wondering if he thought could be an issue.
0 -
Got other good news tonight. We drained Bev's ascites tonight, and after 7 days, there was virtually no fluid. That's a long way down from 5L in 7 days back a couple of months ago.
0 -
Great news Timothy!
0 -
Great news Timothy, congratulations!
0 -
Mediclisa from MN: yes I go to Mn ONC in Edina...still planning to get a second opinion at Mayo but have to get insurance issues ironed out
Had a Ortho consult today...feeling relieved that my limping is not all cancer related 😀...I found out I have osteoarthritis in both hips and no urgent issues right now ...will follow up in 3 months
0 -
Any pros/cons that anyone wants to share on MD Anderson? Provided they take Medicare, I think I may head there next.
0 -
I started cycle 10A yesterday. This 7-day break, my body didn't rebound as much as it has in the past. The feet continue to hurt, hands are peeling, and GI system is too loose.
Tonight, after taking my pills I came "this close" to vomiting, which is a pretty drastic action for my body. I sat quietly, and nibbled on some caramelized ginger and it passed. I didn't like this feeling at all. Mr 02143 went to the market for the few items that we had to have in the house.
But tomorrow is a new day.... and I will start again.
*susan*
0 -
All done
0 -
patty. All done??? Are u ok?
Elle-- I got 18 months out of Iberance. Was told I lasted longest, but it was no picnic for me either.
Midway thru cycle 8 of X. Got fever of 102 last night, thought I was possibly dehydrated. My son, an MD, wanted me to go to hospital , told him no I wanted to see how I do on my own . Temp today 100*. Not 100%, but feel better. I am up to 1500mg, know I would not be able to do 14/7. People w/HFS, does it start gradually? My palms little red & my big toes red & sore. Lab work on wed. Hope numbers continue to go down. Pray we all have good week
0
