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Xeloda and TNBC

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  • aggiemegs
    aggiemegs Member Posts: 86
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    Just got word....insurance approved, finally! I should have Xeloda in hand tomorrow. Thinking I'll start it on Sunday. Party hard this weekend, lol. Then screech back to reality.

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
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    Hi Ladies!

    I hope everyone is doing well.

    Kelly: I'm sorry that you have been having a rough time. My fingers are crossed that it gets easier for you!! What dosage have you been on, was it the full 2500 mg per meter squared?

    Knitpurl: Love the roller skating story. Great to be having fun. I declared 2016 to be the year that I say yes to everything! Started with a "polar plunge" in the frigid New England ocean on January 1st, and have continued to try to have as much fun as possible. The bike ride over the weekend was fabulous. Truly gorgeous day with gorgeous scenery. Plus, my MO did the ride, too, which was great. As far as the vision stuff: YES! I had it with ACT,and then it also improved when I finished. Now I'm having a little of it with Xeloda, and I assume it will also improve when I'm done. I also get dry eyes with both sets of chemo.

    AggieMegs: welcome, sorry you're here. I TOTALLY get it with the hair worries. But I think it is quite rare for people to lose their hair on Xeloda. Mine has continued growing. I used to always have long hair....it will take years to get it back, so I was so glad that I could get a headstart while on Xeloda. I definitely no longer look like I've been on chemo, but I do find this curly short hair style to be sort of frumpy. Oh, well, at least it's hair! Would love it if I could just tug on it and make it grow faster. Glad the insurance came through! Mine also had a delay, but ultimately agreed to pay. Don't worry in advance how you'll feel on Xeloda, I guess it's unpredictable. I have truly sailed through it, although I start on a higher dose tomorrow, so we'll see if I change my tune. And if you do feel poorly, they can adjust the dose to improve your situation.

    Jacklin, yes, it's me ;-)

    I hope I'm not forgetting anyone! Enjoy these fabulous summer days!

    Tulips

  • kellychameleon
    kellychameleon Member Posts: 48
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    I had to check the bottle for my dosage - it's a total of 3000 mg per day - 3 500mg pills in the morning and 3 at night. So that's already lower than the max dosage? For some reason I thought she was putting me on the maximum, but I guess not? I have an appointment on Tues, and we'll decide if we need to reduce it a bit. I had to get an RX called in today because the Imodium wasn't cutting it. Thankfully my feet are feeling better. I just wasn't expecting all of this! Of course I'm on Carbo too, so my body's going through the ringer again.

  • aggiemegs
    aggiemegs Member Posts: 86
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    Kelly - That's the same dosage I'm on! I think it's actually a pretty low dose. I got Carbo while I was getting Taxol and it was a pain. I ended up needing 3 blood transfusions because of it. I sure hope the prescription they gave you helps! I have strict orders from my MO that if I have diarrhea that I can't get controlled easily, I am to stop the Xeloda and we will go from there.

    So I'm going to start on Sunday, and I'm on a 7 on/7 off schedule, although I may do at least one cycle of 2 weeks on / 1 week off, so I can end up on my off week for a vacation I have planned in October

  • aggiemegs
    aggiemegs Member Posts: 86
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    Oh yeah, forgot to ask, have any of you asked about drinking alcohol while on Xeloda? And has it affected your taste buds like regular chemo

  • Jacklin
    Jacklin Member Posts: 27
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    Hi Kelly, your MO will likely reduce your dose (referred to as "titrating down") when he/she learns of the side effects you experienced. Sorry to hear you had these but glad to hear that it is getting better. I will be joining those in the Xeloda crowd in a few weeks and have been doing lots of reading since learning I'm going to be on it too.

    Aggiemegs - my MO said no alcohol while I'm on Xeloda. Congratulations on getting insurance to pay for it as well.

    Knitpurl - thanks for the reminder to do fun things every day. I also loved the roller skating story like Tulipsanddaffodils

    Tulips - gotcha! Nah, you got me first.....Winking

    Let's enjoy the warmer weather (I know for myself it's easy to complain about the heat, but soon it'll be winter again). Be well everyone

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
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    Hi All,

    I think the dosing is confusing to talk about, because it is dosed in "mg per meter squared" so it depends on how many meters squared your Body Surface Area (BSA) is. So for example, the CREATE-X trial started all the women 2500 mg per meter squared (although the vast majority required dose reductions at some point). But that could mean that some women were getting only 2500 mg per day (if they were teensy and had a BSA of 1.0 meters), or 5000 mg per day (if their BSA is 2.0), or 7500 mg per day (if their BSA is 3.0) or somewhere in between. So just knowing the absolute number of mg you take per day doesn't make it clear if you are on a high or low dose for your body size....3000 mg total per day doesn't sound like a high dose,but if you are 5 feet tall and 90 pounds, that's probably actually a lot, but if you are 6 feet tall and 200 lbs, that is probably little. (Sorry if this is obvious to everyone, but it took me a while to understand why everyone's dosing varied SO MUCH).

    I start tonight on my highest dose yet....going up to 2500 mg per meter squared, which means 4500 mg per day for me (9 pills per day!). My guess is that I will finally get those side effects I've been anticipating. But since I only have 2 rounds left, and I have a pretty lax summer schedule, it seems manageable (I hope!!)

    I also had Carbo when I did Taxol, and it also did a number on me. It was easy to tease out the effects of Carbo vs. Taxol because I had Taxol weekly but Carbo only every 3 weeks. The Carbo clobbered my blood counts....I had 4 chemo postponements due to extremely low white cells and platelets. I was severely anemic and also needed blood transfusions. That was serious stuff for me!

    Kelly, I hope you continue to improve quickly! I've heard those Rx diarrhea meds can really help.

    AggieMegs, my MO didn't mention avoiding alcohol with Xeloda, so I have continued to have some. No problems, and my blood work has been totally fine, all my liver levels completely healthy. I'm not advocating it, esp given that Jacklin's said not to--of course you should ask your own MO, but it may not be universally discouraged by MOs. Of course, I'm not drinking a lot.

    Take care everyone!

    Tulips


  • kellychameleon
    kellychameleon Member Posts: 48
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    Tulips, thank you for that explanation! My MO didn't explain any of that to me, so I had no idea. I'll have to ask her about that. I am in no way a tiny person, so it doesn't sound like my dose is on the high side.

    The RX has helped tremendously - I'm feeling pretty much normal today. Hopefully I can enjoy a few good days before we start this all over again!

    My MO is okay with me drinking in moderation. I went out to dinner with friends last night, and I pushed that moderation thing a little too far (I'm regretting that third glass of wine!) I was just so happy to feel like myself.

  • aggiemegs
    aggiemegs Member Posts: 86
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    Well nowI'm paranoid that my dose may be too low to do any good...I'm 5'6" and 235 lbs. Thanks chemo! I just calculated my BSA as 2.23, which means my 3000mg per day is a pretty darn low dose.

  • kellychameleon
    kellychameleon Member Posts: 48
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    I went in today for my carbo infusion and was supposed to start the 2nd round of Xeloda. She is delaying until at least Friday because I'm still having some diarrhea issues (getting better, but not quite gone). She's reducing my dose for the next round from 6 pills daily to 4 pills every day for the first week and 5 pills a day the second week. Hopefully the side effects will be more manageable. The plan is to see how that goes and hopefully slowly go back up to the 6 pills a day.

  • knitnpurl
    knitnpurl Member Posts: 44
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    I'm on round 2 week 2 and this has been worse than that first round. On the good side, I've only had one major side effect. On the bad side, my feet are killing me. I've been using Eucerin and Aquaphor on my feet every night, wearing soft fuzzy socks and trying not to walk too much. My hands just feel tender but feel like they would get worse if I pushed it. Any recommendations on easing the pain? I don't have blisters. It just feels like I've been walking barefoot on concrete all day.

    Thanks ladies. I've been reading and following your posts and hope you're doing ok.

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
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    Hi all!

    In terms of managing the pain of HFS, a few things I came across: supposedly lotions/creams with Urea help, so I bought a few versions that had at least 20% Urea. No way to know if they improved things (I should have used it on one foot and not the other, to compare!), but mine has been manageable. I also read about some antioxidant product, i think it was Antioxidant Complex T5,so I bought that and mix it with a basic lotion. That *seemed* even better, and there were some studies supporting its use for HFS, but I can't swear it improved my situation. Overall, I try to put some of these lotions on as often as possible,probably averaging 3-4 times per day. I assume that helps with peeling and external dryness (I haven't had any cracking), but I don't personally believe it will remedy internal pain. Perhaps Tylenol/Advil? My worst rounds were 3 & 4....it has actually gotten better even though my dose has slowly climbed. So Knitpurl, who knows, yours might get better. But to cheer you up, there were some studies in Germany that showed that the women who got HFS, the Xeloda was more effective for them. So it may be worth it ;-)

    Kelly, hoping you are all better for Friday!

    Aggiemegs, don't listen too much to me about dosing, but I would just ask your MO to discuss with you what their strategy is and how they chose dosage. I think a lot of MOs choose to start low, and if it's tolerable, move up. Everyone seems to have a different point at which they cross over from manageable side effects to intolerable side effects.

    The dosing is confusing to me, because they've done a fair amount of testing different dosages for metastatic TNBC (mTNBC), but I am not aware that they've done a lot of testing for our situation (trying to prevent metastasis before it happens). It seems the goal/strategy is different, so it isn't clear to me that the lessons learned from mTNBC apply to us. For example, I assume that for mTNBC, the goal isn't necessarily "cure", but more management--they are trying to keep the cancer stable or shrink it, but they know they probably can't truly eradicate it. They are trying to "keep it at bay" I think. But in our situations, the goal is to get rid of every last speck of cancer I think, so that we can hopefully be cured. That is why I want to take as much as I can, up to the recommended max dose, without truly suffering. If we leave any cancer cells behind, it can re-grow and come back as recurrence or stage 4, I think.

    I read an awesome book this year, The Death of Cancer. The author was a former head of the NCI and Sloan Kettering and Yale Cancer Center. It was great for many reasons. But one story stuck with me. When they created the first cure for Hodgkin's Lymphoma in the 1960s at the NCI, they tested it and it cured about 40% of the patients (prior to this treatment called MOPP, it was 100% incurable). Huge success, but it was a brutal treatment, there were no anti-nausea meds back then, so it was AWFUL to go through, but at least 40% were cured. So when they rolled it out to other cancer centers, they were shocked they did not see so many patients get cured. Almost none were cured. It was a mystery why it was only working at NCI. Then they found out that the oncologists around the country were lowering doses, or eliminating some of the chemos, to make it more tolerable. They didn't want their patients to suffer as much. But then it didn't work, (it may have temporarily lowered the cancer burden, but didn't eradicate it) and in all those cases, the cancer came back and the patients didn't survive. This story made me very interested in dosing. For example, when I did ACT, I had 4 postponements due to low blood counts. I will always worry that those delays were harmful, although my MO said it was fine.

    So I don't know the answer about optimal dosing for us with Xeloda, and I absolutely don't want to scare anyone (remember, I know nothing about how they came up with the 2500 mg number, etc), but I do think it means we should all ask questions. I don't necessarily think that the dosing that they use for metastatic TNBC applies to our situation, do you? And if anyone learns anything interesting about it, please share!! Plus, I wonder if the optimal amount really varies by person. For example, if it is more effective for people who get HFS, maybe if you get HFS at a very low dose, that is enough medicine for you??

    I hope I'm not confusing anyone. If so, please pretend you never read this!!!

    Good luck to all!

    Tulips


  • Jacklin
    Jacklin Member Posts: 27
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    Tulips&Daffodils - where did you purchase the antioxidant complex T5? I'm interested and want to be ready to use it, if needed. I had such a rough time with taxol (as you may recall) and when I read knitnpurl's struggle with cycle 2 it makes me hesitate. I will take the Xeloda, just not looking forward to the HFS, so am trying to be as prepared as possible. Do you have a link to the study in Germany that you refer to? I don't remember reading about it anywhere.

    knitnpurl, how long do your feet hurt for - is it a one day thing or multiple days, increasing every day? Is it the toes or the whole bottom of the foot? Are you feet red at all? Would you say most of the pain is internal or external pain?

  • knitnpurl
    knitnpurl Member Posts: 44
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    Tulips- thanks for all that information. I'd read about the urea cream as well. I gave it a try, but maybe it was too little too late, although I don't have any cracking or blistering.

    So here's what happened. It was pretty bad yesterday. I could only shuffle along and needed to keep my feet up. My hands and feet have gotten more red. My hands are better than my feet and I've been able to keep knitting through this all. I called my MO yesterday. They recommended the urea cream and getting double foam insoles. I already had a 40% cream, it's a prescription - I had some really bad calluses on my knees a while back, but they said not to use it because it would be too much. They said to try to get Gold Bond Rough and Bumpy. It was sold out but I did find one of their foot creams that has urea as the second ingredient. Even with these extras, I still couldn't walk normally. The pain is just really super sensitive feet. Kind of prickly but if I walked too much (and I was doing normal walking around the house and the supermarket-not going crazy and trying to do miles. I don't work, except as a mom, so I'm able to rest when I need to.) the pressure became unbearable.

    The doctor did say if it got really bad, stop taking it. So that's what I opted for this morning. I'm only three days short for this round and I'm already seeing the doctor on Monday. He'll either lower the dose or change the schedule to one week on/one off. It took all day but I finally was able to walk normally this evening. Things still tingle but I can walk.

    I do feel guilty about stopping it because of all the reasons you listed above. I want to do everything I can to try to make sure there isn't a recurrence. On the other hand, my doctor was very certain that we would be adjusting this somehow.

    I'll keep you all posted after I see the doctor. I do want to keep going with this.

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
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    Hi Ladies!

    Jacklin, I bought the antioxidant complex t5 online. I think it was herbarie.com. I didn't know how much to buy, so I bought the $30 size. Way too much, you could probably try the $5 size might be enough (I guess if i was doing it again, I'd get the $10 size bottle). It is a liquid, and I learned to mix it with a basic lotion I think in ratio 1:6 from the "All about Xeloda" thread within the Stage 4 forum on this website. There is an extremely caring husband who posts in that thread; he did SO MUCH research to try to reduce his wife's HFS side effects. I think he may be the one who posted about the German studies. This is going back several months in that thread (it is an active thread, so it takes a while to sift through). If I remember right, there were several studies, so if you go through that thread from this year, you'll find more info. Just quickly, here is a study I just found from Germany about HFS and Xeloda effectiveness. This was particularly when Xeloda was used for colon cancer, but it is still encouraging if you suffer HFS, I think: http://fightcolorectalcancer.org/in-loving-memory-...

    Here's another study specifically for metastatic breast cancer and Xeloda effectiveness related to severity of HFS: http://www.ncbi.nlm.nih.gov/pubmed/22687407

    I know there were other studies, and when I mentioned them to my MO to ask if he believed there was a connection between HFS and Xeloda effectiveness, he had clearly read the same studies, and seemed to think it was possible/likely. I just think it's nice to know if you get stuck with HFS, that maybe you are at least really benefitting!

    Knitpurl, I think it seems really clear that when HFS gets bad, all MOs reduce dosing and/or cut rounds short. Remember in the CREATE-X trial, very few of the women kept up with the original dose for all rounds. And as a group, they still saw the 42% reduction in risk, even on the lower doses. So don't feel guilty--it is obviously important to manage these symptoms. I'm so sorry yours got so bad, but am glad you are improving!

    Tulips

  • knitnpurl
    knitnpurl Member Posts: 44
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    Again, thanks for the advice. I found the rough and bumpy cream today and I'm going to try the anti-oxident complex. Like I said last night the feet are still tingly (and much better this morning), but liveable. I'm going to get ahead of HFS this time, take the week to recover, see what the doctor wants to do, and use the cream and complex diligently.

    ETA: just checked out theherbarie.com. They have the complex, but the site has a $30 purchase minimum. Going to see if I can find it elsewhere.

  • kellychameleon
    kellychameleon Member Posts: 48
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    Knitnpurl, I'm so sorry your feet are giving you so many problems. I got the okay to start round 2 today at the reduced dose, so hopefully I'll get through it alright. Right now I'm in the waiting room for my carbon infusion. They had some type of power outage in the chemo room which has put them way behind. I've been up here waiting for 2.5 hours so far. Stupid cancer - who's got time for this!?

  • TNpotato
    TNpotato Member Posts: 57
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    Hi all! I'm jumping on the Xeloda bandwagon as well, today is day 1 of round one for me. (I think my MO is thinking 4 rounds at this point but it's kinda fluid)

    My dose is 3000, (1500 morning/1500 evening), 2 weeks on, 1 week off. (I'm a shorty, 5'1" on a good day...)

    I finished AC+T neo-chemo on June 24, had a PET which showed kinda mixed results (tumor and intra mammary node no longer showing any uptake) but my internal mammary nodes were still lighting up. After discussing options with my team, they recommended Xeloda to shrink the nodes prior to rads (possibly same time as rads but that's under discussion today during their weekly meeting), so here I am.

    My MO team was recommending the Udderly Smooth with Urea as several other people have mentioned. My speciality care pharmacist (who also was a great guy to help me/my hubby with the self administered Granix shots during AC+T) mentioned BagBalm worked well for people he'd dealt with on Xeloda, so I'm going to start doing BagBalm at night, Udderly Smooth during day, see how that works. (I may see if I can find the antioxidant complex t5 online as well - thanks for the info!)

    knitnpurl - I hope you start feeling better soon! ">> I don't work, except as a mom," I've worked as a network engineer, and been a stay at home mom. The "stay at home mom job" was always WAAAY more work for me!

    kellychameleon - Hope you are feeling better as well. You've got quite a full plate of chemo! :)

    Hugs, sending positive thoughts to all ladies on this thread (including any I missed!) and hope healing happens quickly!

    Note on different MO's advice: thought it was interesting that while my team warned me about HFS, diarrhea, mouth sores, sun-sensitivity (just don't go out without cover-ups or sunscreen), they also REALLY emphasized the point of using barrier methods for sex during the two week "on chemo" period (and 48 hrs following the end of a 'on' round).

    So as my fav nurse said during the Xeloda chemo teach: "Dental dams!" Dental dams for alllll of us! lol Just thought I'd toss that reminder out there as well! :^)

  • 4everStrong
    4everStrong Member Posts: 88
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    Hi all.

    So I have had my blood test yesterday and I met with MO and also saw my Surgeon to discuss the open wound.

    My blood results are little low in white and red cell count and also on lymphocytes. All the rest seem to be within the right range.

    My vitamin D is about right, just about, so I ask my MO about switching to daily intake rather than a monthly intake of vitamin D- he agreed!. I asked him about the pain I have in my foot and he doesn't seem concerned, I will contact an orthopedist and follow up this pain with them.

    The surgeon still doesn't understand why I have an open wound, she said it is healing but quite frankly she doesn't understand why it still didn't heal and why is it taking so long.

    PET scan is a no! for my MO, he said at the end of treatment he will be asking me to do MRI both breasts and a thorax and pelvic scan and that's all. After that we will meet every two months.

    Thanks for your support, will meet my RO on Tuesday – will keep you posted.

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
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    Oh, the $30 minimum must have been the reason I bought the big bottle! I just forgot about that. I think I had a hard time finding another source for that, but if you find it cheaper, please post here so others can find it. Wish I could share mine, but I live in Rhode Island...doesn't seem anyone else is nearby. And I forgot, Bag Balm is also highly recommended as TNPotato said, although I personally didn't like the smell of it. It is a thicker emollient product, so sometimes I used a thick Aquaphor at night, too, which doesn't have a scent. But maybe others like the scent of Bag Balm.

    Kelly, that long delay must have been annoying at the infusion center!

    Knitpurl, let us know how it goes tomorrow. I hope your feet really recovered this weekend!

    TNPotato, just curious, did you squeeze in surgery somewhere in your treatment, or is that still ahead for you? It's so interesting to see all of the treatment plans. Also, thanks for the extra reminder!

    By the way, it's my understanding that the way Memorial Sloan Kettering is using Xeloda in these situations is 6 rounds of the 7 days on/7 off schedule (vs the 8 rounds of 14 days on/7 off that the CREATE-X study and my own oncologist prescribed). So that's much lower dose, and what they think is best there. So if my notes above made anyone nervous about not getting a high enough dose, maybe knowing that MSKCC prescribes a lower dose will assuage any concerns. I think I heard they (MSKCC) are now recommending it for all TNBC patients who had residual cancer burden 2 or 3 after neoadjuvant chemo.

    Thinking of everyone....

    Tulips

  • Jacklin
    Jacklin Member Posts: 27
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    Thank you for the information Tulips, I will certainly post here if I find it any cheaper elsewhere. I highly doubt it as I'm in Canada, so we have to pay even higher rates for shipping.

    knitnpurl, I hope your feet are feeling much better today. Please keep us posted on how you're doing.

    Thanks for the timely reminder TNpotato!

    Stay well everyone.

  • TNpotato
    TNpotato Member Posts: 57
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    TulipsAndDaffodils - No, I haven't had surgery yet. Actually, after my team met last Friday I'm probably going to do one round of Xeloda that in my MO's words would be a "bridge to surgery", then surgery, rads (possibly with Xeloda) or more Xeloda afterwards. Loopy It is amazing how each case is unique and our treatments can differ! Hugs to all you wonderful women! Hug

  • knitnpurl
    knitnpurl Member Posts: 44
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    I saw my MO today. He said everything looked good and wasn't concerned that I'd skipped the last few days. He said to go on the week on/week off schedule, and if I do that and find my hands or feet bother me 3-4 days on the off week, then wait a few days before starting the next cycle and reduce the dose. Everything does feel better with just a little tingling.

    As for the antioxidant complex, I haven't found anything yet either. It's just that $30 minimum purchase that's the issue. I want to get the $11 bottle, but oh well.

  • LifeAloft
    LifeAloft Member Posts: 69
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    Hi ladies,

    I had surgery 3 weeks ago and did not get a PCR, there was 2mm of cancer left...ugh, so close! I did the RCB calculator and if I did it correctly, it showed 1.5 which placed me at a RCB of 2. I saw my surgeon today and she said that she didn't think I needed any more chemo but that is ultimately up to my MO (I see her in a couple weeks). I've really been thinking about Xeloda and considering pushing for it if my MO says no. I still have rads to deal with so I have some time to think about it and research. My thought is that I'm only 45 and want to throw everything at this that I possibly can.

    I just wanted to thank you all for all of the info, you've been a great help to me!

  • kellychameleon
    kellychameleon Member Posts: 48
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    So it seems that most of you in the group have already had radiation or will have radiation prior to starting Xeloda? I'm doing the Xeloda/Carbo first, and then moving on to rads, probably in January. Then I'm having my ovaries removed, then reconstruction. I'm guessing It will be next April until I'm (hopefully) done with all of this.

    I started my 2nd round on Friday - I finally got through the long wait for the infusion! So far feeling good - just a little tired. I think I mentioned this, but she lowered my does this round to 5 - 500mg pills per day for the first week, and 4 pills per day for the second week, hoping to increase the dose back up later. I'm keeping my fingers crossed that it's easier this go around!

    LifeAloft, I'm sorry you didn't get a PCR either. So frustrating! I really was convinced that I would have one because it seemed to shrink so quickly when I was going trhough chemo. Grrrr.

    Good luck with your plan!

  • LifeAloft
    LifeAloft Member Posts: 69
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    Thank you Kelly! (From another Kelly). Best wishes to you too

  • kellychameleon
    kellychameleon Member Posts: 48
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    How's everyone doing? I got knocked down hard on Thursday with side effects. Doctor told me to quit taking and start again Monday. Thursday and Friday I had intense stomach pains all day and have had horrible diarrhea since. Finally this evening I'm having some relief. I dread the thought of going back on it tomorrow. I'm only going to do 2 pills in the morning and 2 at night and will try to stay on top of things with Lomotil and Prevacid and hope that helps some. I just wonder if it's worth all of this! I have 4 trips planned over the next two months that were planned before I knew I was going to have to do this extra chemo. But then I think about the fact that I have two little girls, and I guess if this makes a difference in the reoccurrence chance, then it's worth it. It's just so hard. My 3 year old had a hip hop recital today (totally ridiculous hot mess, but adorable), and I would not have missed it, but I just felt so ick.

    Sorry for my stream of consciousness post. I just was not expecting to struggle so hard with this.

  • TNpotato
    TNpotato Member Posts: 57
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    kellychameleon - ((HUGS!)) Hang in there! You are in my thoughts! You are doing everything you can to kick this cancer in the butt!!

    I'm actually going into surgery soon (18th) so my doc stopped the Xeloda on Thur. :( I'm so scared of this cancer spreading while I'm having the surgery and recovering, but I'm trying to stay positive and just put one foot in front of the other until I can get back to rads/chemo! Big hugs to all on this thread!

  • aggiemegs
    aggiemegs Member Posts: 86
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    Hi all! Hope everyone is doing relatively well. I've been occasionally keeping up with this thread and a few others, but have been trying to get my darn mind off cancer lately. I'm on day 3 of my second week of taking Xeloda (I'm on a 7 on, 7 off schedule) and so far, my only real complaint is exhaustion. By Tuesday (I start my pills on Sundays) both weeks, I have been completely zapped! I have started back with doing Bikram hot yoga classes, and it has really helped my mentality about everything. I forgot how much I loved going to these classes!

  • knitnpurl
    knitnpurl Member Posts: 44
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    Hi all! Glad to hear from everyone.

    Kelly - hope you're feeling better. Just let your doctor know about the trips. I'm sure that the schedule can be altered a bit.

    TN - it'll be all right. You just have to do everything you can!

    aggie - Fatigue has hit me as well. I started getting acupuncture back in April during radiation. I admit I'm a believer in some alternative therapies, but mostly when used in conjunction with standard practice of care. When some people ask me what the acupuncturist actually does for me, all I can say is I don't know. I go there, she puts needles in me, I rest for an hour, and have energy for the next two weeks! In fact, when I had my first appointment I didn't even realize that I had more energy until a week later! It suddenly dawned on me that the week before (all of this during rads) I was going to bed earlier and earlier as the week went on. Then the next week I had acupuncture. After that I then proceeded to start cleaning up and clearing out some big jobs around the house I'd put off.

    I'm currently on day 3 of the new week on/week off schedule. Things are going well (knock on wood). I couldn't find the antioxidant complex, but I've been very good about using the Gold Bond Rough & Bumpy. I put it on my feet every morning and night, and my hands each night. I wear gloves at night so that it sinks in and socks all the time now.

    Other than that, for the moment anyway, the major side effect is that I'm just dried out from the Xeloda! I'm putting in eye drops (my eye doctor recommended Refresh and said not to use anything that "gets the red out"), drinking water, and using lotion all the time.

    Take care ladies. I check the boards often and it's great to have your support through all this.