All about Xeloda
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Cristina, my first cycle was a pain festival. I was doubled over at times, doing Lamaze-type breathing patterns. At that time, I had mets invading my common bile duct, we are pretty sure-- I had just had four liver failures, three surgeries to repair the damaged duct and insert stents, and basically my whole biliary tree was a wreck. The next cycle I had some twinges but nothing that took my breath away like that first cycle. It was definitely pain from the cancer cells dying off-- my TMs nosedived during those early cycles.
I have fatigue and some other SE's now (three years and 70 cycles later), but no pain.
I had some bone pain in the early cycles (I have multiple lesions in almost every bone). That bone pain is gone, too. My bones hurt round-the-clock for 18 months on Femara, and also another 18 months or so on Afinitor + Aromasin, so this reprieve feels like a miracle.
Hang in there. That sharp pain probably means Xeloda is kicking some BC bootaytay.
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Thanks for the feedback ladies, I am going to try lowering my dosage just a bit at night. I took the normal dosage last night and it was very difficult to get up this morning. I had a feeling of diarrhea, and I did poop but it wasn't runny at all. I also had some nausea and headache. I took pain meds and felt much better. I called my onc, but I think I'm only going to take 2 pills (1000 mg) tonight. It's just too powerful but perhaps all the pain is the liver mets dying, I certainly hope so! And my bone pain is almost nil at this point!!
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Babs, so happy to hear of your NED. May you dance with him for a long time! You and I are on the same dose. My parents don't know of my progression either, and it's been 2 years. Both have very declining health, and to be honest I would not have guessed that they are still here. Don't get me wrong, I'm glad they are. I just don't want to have to burden them with this information. My mother would be a basket case and hound me to death. My father will just get very upset and then forget about it. He has full blown Alzheimer's.
Tim, glad to hear that Bev's TM's continue to decline.
JFL, I'm one that deals more with D (diarrhea) as opposed to C (constipation) but I have had it on occasion.
Lulu, I have never had any pain from cancer, never. Even to this day. All my issues are SE's of Madame X, not cancer!
Christina, I found I was able to tolerate a larger dose after I had been on it awhile. I am currently a little over a year.
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Babs, I'm sorry to read your parents are in ill health. I agree telling them about your progression wouldn't accomplish anything.
I have kept my cancer and the fact it's Stage IV secret for over ten years from everyone except Hubby and medical folks.
When I was diagnosed (Stage IV right off the bat) both my parents were dealing with difficult health issues of their own. Telling them their only daughter is terminally ill would have been a terrible blow. One thing that has comforted me about this decision was having both parents predecease me and neither one ever knew I was ill.
Of course it helps tremendously that we live over 400 miles away from each other and mostly communicated over the phone. I'm able to keep a lot of information confidential.
After my diagnosis in 2005 Hubby encouraged me to share my health crisis with my parents but since I was being started on only hormonals and looked and felt normal I saw no reason to add angst to my parents' lives. I'm SO glad I chose to spare them!
Kessala
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Goldie. I got the good news while I was in the car with my mom so she heard bits and pieces and saw me crying with happiness. She immediately asked me what was going on. I started with the NED and then gave her an abridged version. She's actually my step mom ( for 46 years) and is very intuitive, has my back, and had recently been asking me a lot of questions. She agreed not to tell my Dad. He's almost 95 and there would be no reason for him to know and worry!!!(She's 85 and strong as could be)
I too have never had ANY pain from my cancer. The only pain was when my rub fractured!
Cristina. Whenever my dosage is lowered it is the morning dosage. I think that's the case with all on X???? Others please chime in on this.
Bab
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Kessala, That it what I was hoping, to have my parents go before me. My mom is only 77, my dad 82. My dad's wife knows of my condition, and agrees that he doesn't know. I'm 2000 miles from either parent. I am on even doses, but when was more pills, they were taken in the evening. Congrats on 10 years. I'm only 2 with stage IV and just not ready to die. It's hard to comprehend when you feel fine!
Babs, was that the first time your stepmom had heard of your condition?
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Kassala I think you made the right decision. You spared them unneeded angst
Goldie. My parents knew of my diagnosis in 8/2012. They knew of all my surgeries, chemo radiation and most hospitalizations but not all. I never told them of my progression in Jan 2015. Since I was just on meds and they too live so far away there was no need to worry them. (I visit every 3 months most of the time). Plus everyone always says that I look good. But every so often my mom looks at a picture of me calls to say I look tired and that I should take it easy. And lately she's been telling me that I sound tired when we speak on the phone. I'm sure she knew that something was going on! I am happy she agreed not to tell my dad. We lost my much younger sister in law 2 1/2 years ago to a rare cancer and my dad took it very badly
Babs
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So delighted to hear you're NED, Babs! I hope that lasts a long long time! Have been enjoying a little break in the sun and a break from Madame X! Feel really good and energised. My feet have almost recovered but my hands still sting a bit. Some days I have gone for long walks. And at times, I've even forgot I have cancer! Hope you are all well. Trying not think about going back on Madame X in a couple of weeks
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Survived my first cycle of Xeloda...definitely notice a difference on my off week regarding nausea. I noticed many of you mentioning bone pain...I know there is involvement in my left hip and have been limping a little ..for some reason it really flared up Friday eve and I could hardly walk..Its definitely improved the past few days...I have ONC appt this coming week so planning to discuss at what point more radiation might be considered ..if any of you have experience I would appreciate hearing from you...especially if you suggest that the pain could be Xeloda doing its job!😀
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Stilts, the bone pain may be chemo flare, a sign the Xeloda is working. I have experienced both liver pain and bone pain flare and this chemo is working well for me with excellent PET results recently.
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Thanks JFL...I'll take a chemo flare any day if it's working😀....guess I'll find out with my next scans
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Stilts, I would wait a few cycles at least before going to radiation for the pain. As others have said, pain flares are not unusual when the Xeloda kicks in, because of cancer die-off. You may have much less pain after the initial cycles. I hope this is the case for you!
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Interesting blood test results from my wife. She was off xeloda for two weeks, then took if for only 4 days starting on day 15, was given a blood test at days 14 and 25. Between days 14 and 25 she had a significant drop (20% for CA15) in both tumor markers. Makes me think you don't need much xeloda or for very long if you are responding to it. Bev's CA15 is now down 71% from its peak a couple of months ago.
Too bad her Onc isn't receptive to the idea of one week on, one week off to lessen side effects. It seems like you don't need to be on for two weeks to get significant benefit.
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Tim, I did the 7/7 schedule for awhile, and my TM's went up, so onc put me back on 14/7. I cheat and may skip a day or just a dose. Usually on my first or last day of my "on" cycle. I like the 2 week break, that didn't seam to do any harm.
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Very interesting goldie. Some seem to do better on the 7/7 and others on the 14/7. I guess you don't know if you don't try. Bev's biggest problem is the liver congestion that seems to coincide with treatment. She gets a swollen belly and fluid accumulation. The draining relieves only a fraction of the swelling. It's got to be due to the cancer being in her liver, but this negative side effect of treatment seems rare. She got a lot of relief from the 14 days off. Her belly really went down in size and her appetite and energy has returned.
The HFS gets pretty bad too. Even disrupts her sleep.
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Timothy- i'm doing well on the 7/7 schedule. See if you can get Bev clebetasol foam and salicylic acid prescriptions for her HFS. It's really helping me.
Babs
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That sounds good babs. We will keep trying different medical routes. The Onc wasn't in favor of clebatosol when Bev brought it up. We can try a dermatologist. I feel like a kid trying to get permission from a parent. If Mom says no, try Dad.
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Babs, I talked to my MO about clebatasol and salicylic acid and he said he would look into it. He mentioned it may need to be compounded although he wasn't certain. It sounds like you use the two separately? Would you mind confirming your exact prescription so I can provide it to my MO?
I mentioned your experience and he knew right away the name of the MSKCC dermatologist and gave me his phone number. I visit NY a few times a year for either work or personal and may consider taking a trip to see the dermatologist, if needed. My MO came from MSKCC years ago.
I am so glad my current MO is so open about treating side effects and exploring what he isn't familiar with. My prior MO was the opposite. He didn't seem to be that into treating side effects and was closed minded about what he didn't know. Ironically, he was not a breast expert although he saw a lot of breast cancer patients. He was a world renowned lung MO. My current MO is a breast expert (and does not have the big ego of the prior one) and it makes such a difference!
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I was scanned today. There was no evidence of metastatic disease. It was a relief. I have been off Xelida for 4 weeks. Now it's time to decide if I start up again or take my chances and See how I do on no Meds. Never an easy decision.
But celebrating my results.
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LFF that's wonderful!!!! So happy for you!!!!! Maybe a reduced dosage??!!! Please celebrate!!!
Timothy & JFL. I use the .05% clebetasol foam first. After it dries I use the 6% salysilic acid cream. It's done 2x per day. It was available at cvs so I don't think it's compounded but there is a less expensive pharmacy in NY if you want the name pm me
FYI. It took a long time to get the appt with the derm so JFL if you go that route call sooner rather than later
Babs
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That's so great Left Foot!! As a newbie, I am very happy to hear that.
Babs, I also go to MSKCC. Do you mind if I ask who you see there?
When did you start to feel your side effects? I am towards the beginning of my second week on (7/7 schedule), and other than some fatigue and some mild tummy issues, I haven't really felt anything yet. Or maybe at this point I am so used to being on drugs between my cancer and my cancer-caused secures, that I forgot what a normal baseline is supposed to be?
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Becs, I think we are all different. I had double over cramping and diarrhea on my first cycle, but my dose was high. So we lowered the dose and those things went away. I've been on X for over a year. I can say that the H/F syndrome was accumulative. But I think it was at least 6 months before it started getting bad. Congrats on beating your childhood leukemia! I see you have brain mets. One of my friends here had brain mets and along with her traditional treatment she did medical marijuana. She is now NED. I don't have brain mets, but I am now doing RSO, which is Rick Simpson Oil, also known as Phoenix Tears.
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Thanks Babs! I was diagnosed with Leukemia at 14, the summer before my freshman year of high school and spent my freshman, sophomore, and part of my junior year on chemo. Still graduated on time, went to a top 50 college, and a top 15 grad school. And despite, everything now, I continue to work full-time! Although chemo than was WAY worse then it is now. There would be times that I would throw up at least 15 times in one day. My poor parents...
The doctors are starting to send a trend of women who went through chemo in the 90's during puberty and a link to advanced breast cancer. I am part of numerous studies at Sloan, especially since I have both triple positive and triple negative cancer at the same time in the same breast. My mets are actually mix of both, which is the first time anybody at Sloan has ever seen this type of case. So I am a unique subject to study, but anything to help prevent this happening in anybody else!!
Since medical marijuana is now legal in NY, I did ask my neurologist about it. He said it is just in early stage trails for people with a different kind of seizure disorder, not a cancer intruded one. And there is no real data on it yet, and my seizure meds seem to be working, I didn't want to push the issue. I have my next follow-up brain MRI at the end of the month...
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Leftfootforward, Congrats!
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Hi Xchicas;
It's so nice to know that Xeloda is working for some of us and thatsome of us are NEDchicas.
I'm going to have my blood worked out today.
Cheers
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Well after 2 years on femara and 11 months on ibrance: falsodex combo it looks like I am on to xeloda. Waiting on shipment from pharmacy. I've went back and read much of this thread. Very encouraged on how many people it is working for and also for how long. Very concerned about the hand foot burning peeling stuff. Mo told me less then 30% have this se but reading this thread it looks to be way way more then that. I am already on a probiotic and prebiotic and other suggestions for a xeloda newbe ?
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Hi Patty
Welcome to X. I hope and pray that it gets you great results. What protocol and dosage will you be on? I would aquafor my hands and feet starting now every night and then put on cotton gloves and sox to help delay the HFS. It is cumulative. Don't soak either in water at this point on. I'm happy you're already on a probiotic. That will help with stomach issues.
Once again I hope X works it's wonders for you!
Babs
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thanks babs. I guess my pool lounging days are gone ???
I will be on 7 days on 7 off three tabs ( dunno mg) twice daily
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Patty. Lounging near the pool is a better idea but in the shade. You don't want either sunburned!!! I was started on 4 -500 in am and 4-500 in the pm. I'm now at 2-500 in the AM and 3-500 in the Pm after this 2 week team I'm on. My scans last week Showed NED I'm thrilled since i blew threw Ibrance/ letrazole in 7 months and another txt in just 2 1/2 months. I was really down. I am so hoping Xeloda works for everyone for a long time!!! ( A girl can dream!)
PM any questions you have!!!
Babs
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welcome patty. I hope Xeloda is kind to you and that it kicks your cancers ass.
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