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All about Xeloda

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Comments

  • milehighgirl
    milehighgirl Member Posts: 397
    edited October 2013

    Wow, a lot has been going on the last few days!  I'm two days out from finishing round 6 of 7/7.  Thankfully no side effects.  Those of you having breathing difficulties, it took me about two months on Xeloda before my pleural effusion started to dry up.  Still have a little shortness of breath at times but not debilitating as it was before. Starlover, hopefully the X will work on the lungs as well as it did mine.

    Dina, I think I'm SE free because of the 7/7.  So far I've been lucky.  I see the PT Friday for my hand swelling which started before the X so I can't say it's because of the X.  I hope your SE's disappear!

    Tough questions Rangermom.  I hope you'll be able to stay with the Xeloda.  It may be keeping the ca at bay elsewhere.  Bone pain stinks as I can attest to my hip pain which is constant.  I won't do radiation - ever so I'm having to live with it.  I won't have any scans again until after the first of the year - yeah!  Onc. says she sees real progress with the X in a short period of time.  Keeping my fingers crossed.

    Sue

  • naturelover
    naturelover Member Posts: 71
    edited October 2013


    Hi milehighgirl,


    I'm so happy for you!!! Yeah!! I just finished my 2 wks on this Monday and it has been wonderful to eat whatever I want to!!


    I love this site because I really don't know what I would do w/o you all!!!!


    Love you all! Good night!


    Judy

  • Europa
    Europa Member Posts: 39
    edited October 2013


    RangerMom, how many cycles of X have you had? I have been reading alot and the time of response to X seems to vary. Some have seen good results in as few as 2 cycles, others it has taken a few months or at least 4 cycles. At the point that I am at, I think I am willing to give a drug a chance to work before I move on. I guess I am a second guesser. I am doing that alot with the fact that they said that faslodex was a slow mover, yet I had progression and I moved on. Maybe I should have given it a longer chance??? These are such tough decisions that I dont think that I would be comfortable in giving a response one way or another. Like I said, I am always second guessing myself. I guess that it is whatever that you feel comfortable with. In my situation, after X, i am looking at infusions and I want to stay away from that as long as I can so I can definately say that is skewing my thoughts to staying with X and hope that it works and I am not wrong. I really feel for you and good luck with your decision, I know how difficult it is.


    Hugs, Euro

  • CalicoCat
    CalicoCat Member Posts: 299
    edited October 2013


    Hi, I almost got through Round 2 of 2-weeks on, 1-week off Xeloda, but had to scream "uncle" because the hand-foot syndrome got so bad. If I go off Xeloda, I'm just wondering how long it takes for the hands/feet to get back to normal, or am I stuck with this for the rest of my so-called life? :) Thanks for your help.


    xoxox


    Calico

  • Mompsych
    Mompsych Member Posts: 88
    edited October 2013


    hi rangermom


    As Sue said- those are tough questions with no easy answers. Do your tumor markers generally reflect what you are seeing in the PET scans? Some people's do and some peoples don't. If they do, and they continue to rise, it may be time to switch to another chemo. My MO switched my from abraxane to xeloda even though my PET showed no signs of progression because my ca 27/29 and CTCs were inching up week by week. Besides bone mets I also have cells in the lining of my stomach biopsied after an endoscopy, so that is another complicating factor. Unfortunately this is an art as well as a science. If you like and trust your MO, it will be important to see what he/she has to say about this. A second opinion is also always an option. Good luck and keep us informed!

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    Thanks all for your answers. I know that as long as the X is keeping it out of my internal organs, that's on the positive side. I'm done 9 rounds of X. I'm off right now due possibly getting radiation again, am seeing the rad onc this morning to discuss. We don't do tumor markers for me. But we are going to do another CTC test, although those are not reliable either, but what the heck. I have a dormant lesion in my lung they think, so possibly the x is keeping that dormant too. I think my next drug would be affinitor, but am guessing, I see the MO on 11/4 and will know more then. Thanks again for your opinions. They help.


    Linda

  • Naniam
    Naniam Member Posts: 586
    edited October 2013


    Rangermom, as I have said I have extensive bone mets and honestly there isn't a bone in my body above knees and elbows (normally doesn't go into the lower legs/feet/arms/hands) that doesn't have cancer. If I have new areas of cancer then to us (oncologist and myself) the drug has stopped being effective. It is time to try another drug. If you are having new areas of cancer in bones then you are taking a risk of it moving elsewhere if you continue the drug. JMHO. Xeloda has been fairly easy - yes always the side effects of nausea, fatigue, sore bones/joints but the best thing for me was I could take my pills and still visit my daughter and family that live out of town. Because of the ease of the drug, I would hate to have to give it up.


    My brain MRI scan - Oh, ladies, I had something happen yesterday that has never happened . I was in the scan, singing to myself and we had done about a 3rd of the scan and all of a sudden, I couldn't swallow. I tried and tried and had to have them bring me out. We adjusted my head, we gave me some water to moisten my mouth, would try again and out I would have to come. Finally, the techs turned their back and I put in two tic-tac's and was able to get through the exam. I have never had a panic attack - not sure what one is like but I was determined to get through the test. Luckily I was the last patient of the day so they had the time to work with me. Maybe my singing to myself was the problem !!!


    Normally the techs don't say anything to you as you leave but yesterday the tech said "now I want you to stay strong and to stay positive; it makes all the difference in the things you face". Ok ---------- Sure things are fine and hope I hear something tomorrow. If not, I will call around 4 pm tomorrow. The report should be back.

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    Naniam - That sounded terrifying to not be able to swallow. Once in an MRI I couldn't hold my breath like they wanted to and started to hyperventilate. Probably anxiety. So today meeting with the rad onc, he wants to do MRI of the full spine to reassess what the spine mets are doing to nerves, spinal canal, etc. That's all good. Yes, I do have new mets, actually were there back in march but that radiologist didn't mention it. on this 10/2 scan, that radiologist, said they were redemonstrated. Go figure. I guess the guy in March didn't think a few more spine mets were important to mention? To stay on Xeloda or not to stay, that's the million dollar question. he said the liver is still questionable, he said the xeloda may be working to keep mets from becoming active (node in my lung dormant). I hope after these MRI's I'll have more information to help me and help my MO decide what to do. I'd hate to leave X because its been pretty easy to tolerate with the 7/7 schedule. God Bless everyone on here!


    enjoy your day,


    Linda

  • rockinlife
    rockinlife Member Posts: 14
    edited October 2013


    I'm new to this forum. Just wanted to report that I just finished my 2nd cycle of 2 weeks on one off. I was on everolimus and affinitor before this, and had awful side effects, plus the combo didn't work for me at all. Tumor markers got too high, then I went for a second opinion and started Xeloda. I had to stop the other combo for a week before starting on Xeloda. During that week, I got severe edema in my feet, ankles and legs. When I started taking the Xeloda, my tumor markers dropped like a rock after only one cycle. Side effects seem to vary for me every week, and my doc told me this could happen. The first cycle, I struggled with nausea. Last week, no nausea but severe constipation. This week, just a little nausea and some finger sensitivity. I have noticed that some of the Burt's Bees products help my hands --- the hand salve has lavender in it and seems to help in addition to the bag balm at night. Also, taking B6 everyday seems to keep the hand-foot syndrome under control. The edema is half-way better. I had gained 15 pounds of water weight and have lost half of it. I would be interested in anyone's comments about similar problems with edema and how long it took to clear. I had a pleural effusion my first week on Xeloda, and was admitted to the hospital and spent the weekend getting the lung drained.... not a pleasant procedure, if anyone has had this done. Now, I've stopped coughing completely and am hoping the lung will stay clear. A big mass on my neck is now totally gone! So, I think this is working!!!

  • mutherflush
    mutherflush Member Posts: 85
    edited October 2013


    Hi everyone. I went to hospital Monday for 4th cycle X and had to have another 7days rest due to severe HFS. However cancer markers were down again and after 3 cycles they have dropped by 75%. I'm due to onc tomorrow and hopefully get the dosage reduced (I'm on 2500 x 2. 14/7 at the mo). I was initially told I would get 4 cycles but if I need to carry on I will ask for 7/7 as its seems that it has been more tolerable for a lot of you X ladies.


    Hi rangermom scary what happened during your scan, I'm due scan on 7th Nov. and last scan I had they had an problem with canula and I panicked before the scan even started. So I know how it felt for you. I too have extensive bone mets and mets to liver and lungs. However bone and lung mets are stable and have been for almost a year, Put on Xeloda for new liver growth. Hope it carries on working and I can tolerate it.


    Good luck with next scan.


    X Helen

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    So glad to hear the X is working! I know its good stuff. I have 3 more MRI's coming up next Tues. Think I'll take a eye mask to help and with the headphones, I think I'll be better. Think I'll take an Ativan this time though. It'll be about 3 hours in there all together. But I am so looking forward to hearing the results. My liver is still questionable, and this second look at it will be reassuring either way for me. Pain is about a 7 today, the vicodan isn't doing much so I'm off to see a Pain Management Specialist. never been to one before, can they prescribe stronger drugs?

  • milehighgirl
    milehighgirl Member Posts: 397
    edited October 2013

    Welcome rockinlife!  I had the pleural effusion before starting the Xeloda.  It took about two months for it to clear up once I got rolling on the X.  Thank heaven - had three thorencentisis' and you're right - it wasn't fun.

    Rangermom, I'm taking oxyodone at bedtime for my hip pain.  Makes me kind of loopy and doesn't always work.  This is the first time I've every taken anything for pain in my life!  My friends tell me that there's tons of stuff out there so when I go back to the doc next week, I'm going to ask for something different - like maybe a script for medical mj.  Guess it's the cadillac of pain killers, lol.

    Blessings to all.

    Sue

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    So good to hear your lung and bone are stable Mutherflush. I do think this X is good stuff because I see so many on here with stable or some regression. Hope the time flies till the 7th for you, stay busy. My new grandson is due to be born on Nov 4th, so each day I wake up wondering if he's coming this day! Its a blessing that is keeping my mind occupied on other stuff than this damn cancer. I'm so excited.

  • naturelover
    naturelover Member Posts: 71
    edited October 2013


    Hi to all you girls who are on the wonder drug X!


    I was on it for one cycle (14/7). I went to the onc (I love mine!!) yesterday. He asked how things were so I started off telling him the positives about X...No breathing issues at all while on the drug.


    Negative SE: terrible jaw spasms, that went to left shoulder, then back and chest. I had 3 episodes of this terrible pain. Doc on call sent me to Cardiologist for EKG...nothing showed up because pain lasting less than 5 minutes wouldn't show on EKG--no damage to the heart but same SE as coronary. He gave me nitroglycerine tablets to use and they stopped the pain immediately--if not to call 911. BP was 88/66. The fact that nitro tabs stopped the pain wasn't a good sign to my onc though.


    His decision was: He was pleased with the fact that my lungs were clear (right before X I had a thoreocentisis--not too bad because the fluid was causing breathing issues and I felt such relief afterwards). He thought that X had worked for me and he was really smiling.


    He will use X for me at a later date since he saw signs that it worked but I am one of a very small percentage that showed SE that could possibly cause a major heart issue and he doesn't want to take that chance because he can use more drugs--now they have new biologic drugs.


    Going back to a combo of two drugs they're using now: Faslodex and Arimidex. So I got my injections while I was in the office, etc.


    He okayed me flying to see my youngest in Dallas but I have to do it now before more breathing issues. I'm so glad that I'm off X for a while but at least we know it is a great drug and my body responds to it..


    Sorry this is so long but I felt like you all would want to know the good and bad about X.


    I'm 100 percent positive from what you all are writing that it is a wonder drug for almost all of us. So thankful for drugs that they didn't have when my grandmother had this horrible disease. There's so much hope that by the time my 4-yr-old granddaughter is a young woman, they will have a cure for her generation!


    Take care! Judy

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    Judy, Here's to Faslodex and affinitor doing an outstanding job on wiping out those sneaky cancer cells. I was on Faslodex for a while with very little SEs.

  • naturelover
    naturelover Member Posts: 71
    edited October 2013


    Hi Rangermom,


    I am so excited about you being a new grandmother very shortly! Can't wait to hear more about it. Stories like this help to take my mind off this disease that is so annoying for all of us.


    Love to you and all!


    Judy

  • naturelover
    naturelover Member Posts: 71
    edited October 2013


    Hi Rangermom,


    I am so excited about you being a new grandmother very shortly! Can't wait to hear more about it. Stories like that help to take my mind off this disease that is so annoying for all of us.


    Love to you and all!


    Judy

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    thanks Judy - I'll be posting pictures on the What are you doing for Fun thread! I hope real soon. My fun will be holding that new baby, I can't wait.

  • rockinlife
    rockinlife Member Posts: 14
    edited October 2013


    milehighgirl, thanks for your response. Good to know X can also clear up the pleural effusion. So, whatever fluid is left will hopefully be taken care of over time with the X. I'm a singer, and would like to sing again!! The lung issue has made this difficult.


    CalicoCat, my onc said they take you off X if you have severe diarrhea but not for the hand-foot syndrome. But maybe the 7/7 schedule is better for you than the 14/7. I'm hoping I can stay on the 14/7 schedule so I can pump more of that drug into my system!


    If anyone has any information from personal experience about 1) sun sensitivity or 2) coloring hair while on Xeloda, please weigh in. I know these are minor issues compared to what we are all dealing with, but it does help to keep things as normal as possible!

  • Loveforlife
    Loveforlife Member Posts: 67
    edited October 2013


    Hi All,


    I'm on day 9 of 14 of my first cycle. So far, a little queasy/gassy/no appetite, tired can't sleep, no signs of HFS. Nothing I can't handle. Not much response for my shortness of breath, and my cough has gotten worse. My back pain seems a bit less sharp. Guess I have to be patient (not my strongest virtue...) and wait for the X to do its magic on my lungs. I'm hopeful :-) Glad the weekend is here so I can rest. Working 5 to 7 hours a day this week (basically, whenever I can get into work seems to be okay for my employer for now - I am going through my PTO hours though.)


    Rockinlife - I think I read something earlier in this loooooooooooong thread about sun sensitivity. You might want to go back to see. I was told that you can definitely have a reaction from the sun.


    Peace to you all!


    Laura

  • SyrMom
    SyrMom Member Posts: 575
    edited October 2013

    Jumping in with a quick 2 cents worth ... NO sun, it can make the hand/foot worse and/or cause rashes or other skin issues & swelling.  Same goes for heat; hands/feet need to be kept cool.  However, that being said, I had a severe hand/foot reaction and X didn't work for me at all.  In fact, I've been off it for over a month and still have s/e with skin peeling periodically.  My doseage was reduced and I was switched to 7/7, but by day 5 the symptoms always began.  I'm told the degree of my sensitivity was very unusual.  However, by avoiding sun & heat you can help to offset symptoms; in addition, when walking, etc., lotion before and after and cool extremities down.

  • DianeKS
    DianeKS Member Posts: 36
    edited October 2013


    oh, yes, sun can make things worse. I went to an outdoor swimming pool this summer and burnt my scalp. Sunscreen everywhere else but along my hairline where my hair is thinner. My suggestion...don't stay in the sun as long, or wear a hat in the pool. I was just watching the kids mostly, not actually swimming :)


    I was only on the second cycle at the time.


    Diane

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited October 2013


    Had my latest scans after nearly 9 months on X & it's still working.......stable was the result. Yay!!!


    Pretty happy about that so will continue on my merry way with a good quality of life & hope it keeps working a good bit longer.


    (((Hugs))) to everyone.


    Karen xxx

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    wonderful news Karen! X marks the spot, right!

  • CalicoCat
    CalicoCat Member Posts: 299
    edited October 2013


    Congratulations, Karen!!! Wonderful news, and may you have lots more!


    Calico

  • naturelover
    naturelover Member Posts: 71
    edited October 2013


    Karen, I'm so happy for you!!


    Judy

  • mutherflush
    mutherflush Member Posts: 85
    edited October 2013


    Fantastic news.!!!!!!! Hope I get the response. I get my scan on 7th Nov.


    XXXX Helen

  • mutherflush
    mutherflush Member Posts: 85
    edited October 2013


    Hi rangermom. Hope grandchild arrives on time. Can't wait to see pics. I have 5 grandchildren and 3 great grandchildren. My aim now is to see them all leave school. I asked onc about 7/7 because of HFS and she said she would consider it if scan shows good results. Fingers crossed.


    Take care


    Helen

  • RangerMom
    RangerMom Member Posts: 205
    edited October 2013


    Great Mutherflush, each morning I wake up thinking, could this be the day. Yes, the 7/7 has worked so much better for me. And I think somewhere on this thread, someone posted some statistics that the 7/7 is as effective as the 14/7. My HFS is much more tolerable now, still there but not as severe.

  • hansaim
    hansaim Member Posts: 68
    edited October 2013


    Hello, just wanted to say hi. I had progression with A/A combo and my onc suggests we try capecitabine, which I believe is Xeloda. I have pelvis and spine mets. I will be reading the read from the beginning, 114 pages!

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