All about Xeloda
Comments
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hello to Shetland and all the other exceptional responders on this drug, I need your help in making a decision.
My cancer markers are being fluctuating up by small amounts while on X, but I’ve been feeling really great lately. No widespread aches and pains, fatigue is much less, I'm starting to feel hopeful and basically live my life.
I asked my MO at MSK to postpone my pet by couple months, to six months intervals, because I'm feeling so good, and because I don’t really want to know about a possible progression while I’m experiencing this period of renewed strength and vitality.
I also told him that I’m not ready to give up X in the event of small progression....
Am I crazy to wait two months and live in denial?
For those of you that have been on this drug for a while, have you also experienced tumor markers fluctuating up and what was your mo response?
Thank you all for your support, I’m so grateful to be part of this community.
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hello to Shetland and all the other exceptional responders on this drug, I need your help in making a decision.
My cancer markers are being fluctuating up by small amounts while on X, but I’ve been feeling really great lately. No widespread aches and pains, fatigue is much less, I'm starting to feel hopeful and basically live my life.
I asked my MO at MSK to postpone my pet by couple months, to six months intervals, because I'm feeling so good, and because I don’t really want to know about a possible progression while I’m experiencing this period of renewed strength and vitality.
I also told him that I’m not ready to give up X in the event of small progression....
Am I crazy to wait two months and live in denial?
For those of you that have been on this drug for a while, have you also experienced tumor markers fluctuating up and what was your mo response?
Thank you all for your support, I’m so grateful to be part of this community.
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Mia, I went 2 years with no scans. My TM's during those 2 years were gradually rising, but my reasons for refusing scans was mainly because I felt so good and have never, even to this day, had any pain. Secondly, is being exposed to more radiation, and I hate having that nuclear medicine injected to me.
It is not the doctors decision for you to have scans, IT'S YOURS. It's your body, not his.
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S3k5, I have been on 2000mg a day, 7 on, 7off for several months now. I was unable to tolerate the higher dose. The 2000mg is much easier for me!
Mia, While I was on the higher dose of X, my tumor markers dropped every month, now on 2000 a day it is slowly, very slowly rising. I agree with goldie, if you want to move your scans back, do it. The doctor moved me up to 3 months due to mixed results on last pet and rising tm's. I was going to cancel and let a few more months go by but I noticed this past few weeks, that I am in a lot more pain than normal. In fact, it is the worst I have been in since my diagnosis almost 7 years ago. Like you, I find this so much better than IL. I feel like I've gotten stronger and lived better on X. If possible, I will opt for rads to the worst of it and stay on X. I'm not liking my other options. Stay the course, it's your body!
Hugs and prayers,
Claudia
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thank you ladies! You've confirmed what I intuited...it's my body, it's my life....follow my bliss while I have it!
Goldie....two years without scans? Bless your heart!!! You're giving me some great, new ideas!! I completely understand your desire to reduce exposure to carcinogens.
Claudia sorry about the increase in pain...I hope the zapping if necessary works so you don't have to change therapy! Let's all enjoy X as long as possible
Thank you so much!
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i wanted to share a tip for immediately removing that hot and sore feeling xeloda leaves in our hands and especially our feet.
I've just discovered that a peppermint cooling spray for hands and feet Is nothing short of miraculous. It provides Immediate relief that lasts. After the spray, I finished my spa treatment with a foot cream and voilà, my sore and achy inflammated feet feel now totally restored as if Xeloda never happened. I can now enjoy Bill Maher without cringing and shifting my feet
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I've tried just about everything out there for my hands and feet. I just got off a 2 week break, as I needed some relief for my feet. Altho they healed quite a bit, there is stll lots of peeling.
Mia, do you have a name or brand of the spray?
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Goldie it's funny you asked that...I received the spray many years ago from someone as a gift and had not used it much. I checked on line to replace it, including amazon, but could not find it.
Im going to try the one made by BODY Shop next. Mine is called Foot Cooling Spray and was made by a company called GHB.It contains Peppermint. Sorry I can't be more helpful, but I was very disappointed and surprised myself when it didn't com up.
Before using a spray you might want to heal any sores by applying the oil from a vitamin E capsule directly on the problem spots before going to bed. Vitamin E heals skin quickly I have found.
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Thanks Mia, I do have some iffy spots that I have been putting Neosporin or CBD oil on. Guess I should get me some Vit E.
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Nancy, I do have a good quality of life on Xeloda. I feel well (no nausea; a little fatigue; occasional mild diarrhea). My biggest issue has been hand and foot syndrome mainly in my feet. I've had to give up hiking/walking with friends, which was a big source of exercise for me.
Thanks to all who shared your dosing and schedule. I plan to talk to my oncologist about a dose reduction when I meet with her this Thursday.
For those wondering about tumor markers while on Xeloda, my CA27.29 finally fell 8 points after 12 weeks on Xeloda (a 25% drop) which agrees with the reduction in tumor burden seen on my recent PET/CT. For the first 9 weeks on Xeloda, my CA 27.29 rose.
Theresa
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Miaomix. I was on 4000mg daily of Xeloda non stop for 12 years (207 courses). I was diagnosed from the beginning with Stage 4 breast cancer on my vertebrae and in my bone marrow. The last 18 months my tumour marker Ca 153 started to rise so instead of PETCT scans every 6 months I went to every 3 months. I stayed on Xeloda until my scan showed mild progression and my tumour marker rose to 600. I was then put on Ibrance for 14 courses and my scans regressed and stabilised but markers continued to rise but in January my tumour marker jumped to over 1300 but PETCT was stable and spinal MRI did not show any cancer progression. So my oncologist has put me back on the original Xeloda program to see if it will work again and if not I’ll be going on IV.
Just started back on Xeloda last week so won’t know anything until March and scans in April.
I feel fine and have been blessed with no side effects so far but it is early days.
Good luck.
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thank you Brc and Theresa for sharing your experiences with this drug, I feel so much better about my choice, after reading your stories. I will listen to my body and instincts...I truly hope to stay on this protocol as long as I can. May you both receive great benefits.
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Brc, Thanks for sharing your success story with Xeloda! A 12 year run on Xeloda is incredible! 4000mg/day is a lot. Are you on 4000mg/day now? Are you on a 7 day on/ 7 day off schedule or a 14 day on/7 day off schedule? I hope that Xeloda will be an effective treatment for you again!
Miaomix, Thanks for sharing all the tips for dealing with hand and foot syndrome. I hope that your fluctuating tumor markers has more to do with cancer cells dying and sloughing off. You've given me something to think about with regard to scan frequency. I've had A LOT of radiation exposure over the last 3 years. My PARP inhibitor trial required CT scans every 2 months.
I've tried a lot of different moisturizers on my feet and they all help. Lately I've been using "Egyptian Magic" which was suggested by a UCSF oncologist. It's greasy, but may be a little more effective than some of the other options. I bought mine at Wholefoods, but it is also available at Costco. It's available on Amazon, but some of the reviewers claimed that they were not getting the real product.
Hugs and Best Wishes!
Theresa
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I’ve been reading all posts regarding dosage and scheduling and I want to be as prepared as possible when I see my new mo tomorrow. I want to start easy so I will be encouraged to stay in treatment. I had never quit a treatment until AA combo. I usually don’t question what the doctor suggests, but I’m still leaning to ask for low dosing to start. That AA really messed me up physically and mentally too. I’m fearful where I wasn’t before and not as decisive. I’ll get over it and back in attack mode soon.
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Hi Theresa.
I’m on 4000mg per day with 14 days on and 7 off.
During my 12 years my bloods stayed within the normal range but when they put me on Ibrance 125mg it all but destroyed my blood count and constantly had to take extra weeks off to recover. I’ve transferred back to Xeloda as last time it killed off all signs of bone metastasis and cancer in my bone marrow. It may not work but I feel so well on it compared to the Ibrance.
Hopefully I will get some positive results but if not I’ll try something else.
br
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Hi Nancylm.
When I started Xeloda in 2005 I was very ill as my cancer was found late and I was in the hospital dying. They finally found the cancer after doing a bone marrow test and tumour markers. The reason I am telling you this is because I started Xeloda on 1000mg a day for 2 months then 2000mg then 4000mg. Every dose no matter how small had a big affect on my cancer dropping markers and scans coming back with regression. Within 6 months I had no active cancer detectable on the ct scans and normal tumour markers and it stayed that way for many years.
So if you feel you want a lower dose then talk to your mo. I must say because I was so sick they had to start me out this way and it worked and kept me from side effects.
So don’t be afraid to ask the worse thing that can happen is they say no and if they do there must be a good reason. They are there to take care of you.
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Brc, Your words lifted me. You’ve been through cancer struggles and you are here helping me with mine. I so appreciate that you took the time to message today.
I’m looking forward to my appt. and will let you know what my very young mo has to say. He seems the chatty type, so I’ll see if I can sneak in a few questions.0 -
Hi,
Nancylm, please keep us posted about how your appointment goes.
I am on 2000 mg/day with 7-day on and 7-day off schedule (28-day alternate weeks). It will be interesting to find out in 3 months, if this works for me since I seem to have stubborn bone mets which progressed on CDK inhibitors/faslodex combo.
Here is the link to an article about the efficacy of lower dosage of Xeloda as well as 21-day cycle versus 28-day alternate week cycle:
http://mcr.aacrjournals.org/content/16/8_Supplemen...
If anyone else has come across similar articles for "7-day on/7-day off" schedule, with a lower dose of Xeloda, please share it.
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You Xeloda ladies are so amazing! I started Xeloda in October and have had really bad side effects. I started on 4000 mg/day, 14 days on, 7 off; before the first cycle was over I ended up in the hospital for 15 days with severe neutropenia and low platelets. I also had terrible mouth and throat sores that made swallowing impossible! My doctor ran the DPD test, but came back negative. I ended up needing a month and a half before MO felt I was well enough to restart
So started again at 1000/day, 7 on, 7 off and things went much better. Until I was titrated up to 2000/day. Now suffering terrible diarrhea which has required me to go in for IV fluids three times over the past week!
I will say though - the severe pain I felt in my hips and legs from mets has completely disappeared. So MO and I think its working. But wow its been rough!Hopefully things will level out here for me soon!
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S3K5 .....my MO at MSK told me that the 7 days on and 7 day's off schedule for the capecitabine was started ( after the clinical trial ended) at their hospitals because the 14 day's on and 7 off schedule was producing too many terrible side effects and patients were refusing to take the medication.
I found the 7 day's on and 7off to be the best part about this treatment. I'm learning to manage the hand and foot disease problems which are cumulative,
My platelets are lower but they are not dangerously low according to my MO.
One thing to consider: the capecitabine does it's job within 2 hours of taking it, i therefore I have been protecting my liver and all the other organs by ingesting antioxidants and antimflammatories at lunch time, and I have managed to get my liver markers to return to normal after devastating results when I first started and was not protecting myself.
My MO would rather I didn't, but since we react differently to the same medication, and I dont understands how compromising my liver and kidneys would help me in the long run, I continue to take them. They relieve much of the aches and pains. plus I'm not fatigued as much as when I started or when I was on the anti estrogens
Jamiemarie congratulations on your amazing results!
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S3K5-
Thanks for the information on the 7 days on/7 days off vs 14 days on, etc. I cannot get the article to open. Could you re-post the link? I'm just finishing my third cycle of 7 on/7 off and would be very interested. Thanks!
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S3K5-
Nevermind! I was trying to open the link from my email and was unsuccessful. On the actual bc.org site, it worked fine. Thanks!
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BRC, kudos to you for doing such a large dose. That was my dosage when I first started and after one cycle I told my onc I'm not doing this. The SE's were horrible, double over cramping, explosive D. Was not going to live my life like that. I'm currently on 2500 mg on a 12/7 schedule. Working on year 5 with X.
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X ladies, it has begun. I started X on Monday, the day after I got home from my whirlwind trip to NYC. I'll post pics, I promise. Mis, you live in a grand city.
So, I'm on 1500 twice a day, 14 on 7 off. Day four, I'm feeling queasy and have some diarrhea, not too bad yet. Also pain in my calves most, but also shoulder blade area. I've been taking notes on from tips on this thread. I have not read all the information on this drug, I prefer to rely on all of you. What should I be doing now to help with SE and to prevent hand and foot SE?
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Grannax2- just started on the X on tuesday so Im right there with you. Just a little nausea so far. Can handle that ok. Only thing Im worried about is the hand foot thing and how to prevent it too. do I just wait until I feel something or slather on the lotion now. ONC didn't have much to say about it.
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You can't prevent HFS. It's just a matter of when.
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neogirl. We’re in this together. A friend of mine has been on it four years. She has HF but does several things that help. She gets regular pedicures. I’ve heard it’s the sanding that helps prevent HF from getting as bad. Some say it can be used as a preventative to keep from getting as bad of a case. I can’t afford regular pedicures so I bought a kit to try to sand my own. Does anyone know when that SE usually begins? I heard 4 weeks?
I’m also on an antibiotic for UTI so I’m wondering which is causing the tummy ache?
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This handsome guy was our escort He volunteers his time to “his ladies” His name is Can Muhammad K? He is an international model and dancer. He’s very kind, too. What a combination
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Grannax, Thats interesting about the pedicures. I have never had a pedicure ( I just hate anyone touching my feet ). I know im probally weird about it. I do have one of those battery operated pedi foot files I use on my heels cause they get so dry and want smooth heels. Maybe that would work. ? Who knows. I guess I will wait and see.
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