All about Xeloda
Comments
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Hi Dancing Veggie,
Yes it does mean that you have completed one cycle when you have finished your break. It is funny that you would ask about periods and oophs. I was premenapausal still when my cancer returned. I was put on one cycle of xeloda, then had an ooph. My doc then put me on Arimidex which did not work as well as he would have liked, so I am back on Xeloda. I do not regret the ooph one bit!! It was easy and I had very little pain.
I also have the insomnia and the fatigue. I hate that I am so tired and yet I am unable to sleep a normal schedule. As I am getting more fatigued from the X, I am sleeping a bit longer, but not by much and I am still taking and hour or 2 just to fall asleep.
The worse thing I have now is a lack of appetite. I cant seem to want to eat to take my pills. If I decide to sleep in and dont get up till 10, I find it is almost noon till I am hungry enough to eat something, which means I also am not taking my evening pills till 11 or midnight. I need a new schedule. lol.
Euro0 -
Hi everyone. Hands and feet not so bad today. I should start 4th cycle of x on Monday but onc seems to think I may need another weeks rest to get everything right. All you ladies out there who have been on X for months/years have you been on it continuously or have you had long breaks in between. My last markers show it is working and I am due for TMs test again on Tuesday. I am worried that if I have to have a break the cancer will start to progress again. Would be grateful for any info about long term use.
Hope u all have a great weekend.
cheers Helen0 -
Hi me again. Forgot to ask. What is an ooph?0 -
Hey mutherflush. Sorry to hear about all your issues with X.
(btw -- ooph is oophorectomy; surgical removal of the ovaries)
I just started my 4th cycle this week, after having a scan and finding out that my liver and bones are looking better already (yay!). I have areas of lymph nodes that are still showing progression though, so clearly not everything is responding to Xeloda. My onc started me out on a 1000 mg twice per day and since it seems to be working and I'm not really experiencing any bad side effects, she boosted me to 1500 mg twice per day starting this cycle. So far so good. I have pins & needles/tingling in my feet when I first stand up from lying down or sitting, but it goes away after a minute. The only real issue for me is fatigue. I want to sleep allll the time! When I think of all the worse s/e's I could have though, I guess it's nothing to complain about.
Starlover - I'm curious if you decided to start on X or not. I totally understand your concern with running. I don't run, but I dance. It's how my hubby and I met and it's a family activity, but more importantly it's what I do for 1 night/week just to get some "me" time when I'm not thinking about cancer. I was terrified that if I started X and got HFS, my dancing days would be done. But I was more scared of what might happen if I didn't start the X. I've had 3 cycles now with no sign of HFS issues. The side effects seem to be different for everyone, so maybe you'll be one of the lucky ones too. ... just wanted to throw that out there for you.
Hugs and strength to you all on this crazy journey.0 -
mutherflush...an ooph is an oophorectomy, removal of one or (for prevention of ovarian and breast cancer) usually both ovaries.
H/ F symptoms tolerable up to now. Just starting to experience tingling feeling. Have had itchy palms and soles( usually at night) up till now. Hiked 6 kms on Thanksgiving weekend and then paid for it,but,was it ever beautiful at the lake with all the changing colours... Not sure about running, won't know until you try it I guess. I use the udderly smooth cream from Walmart, best thing so far for me. Comes in a tube form for less than $3.00/ 4oz. On my second tube these days...
I am on my eighth(?) cycle, starting to lose track .....has anyone experienced a sensitive scalp? My treatment also includes Tykerb.
Diane0 -
mutherflush...an ooph is an oophorectomy, removal of one or (for prevention of ovarian and breast cancer) usually both ovaries.
H/ F symptoms tolerable up to now. Just starting to experience tingling feeling. Have had itchy palms and soles( usually at night) up till now. Hiked 6 kms on Thanksgiving weekend and then paid for it,but,was it ever beautiful at the lake with all the changing colours... Not sure about running, won't know until you try it I guess. I use the udderly smooth cream from Walmart, best thing so far for me. Comes in a tube form for less than $3.00/ 4oz. On my second tube these days...
I am on my eighth(?) cycle, starting to lose track .....has anyone experienced a sensitive scalp? My treatment also includes Tykerb.
Diane0 -
Hello, Ladies -
Kebab, I started my X 2 nights ago, 1800 mg twice a day. So far, just a wee bit tired. I have the bag balm and lotion, and just hope I don't have to use it. I, too, seem to be more frightened of what side effects might happen, instead of hoping the stuff knocks out the cancer cells.0 -
Hi to all,
I need to add that I have mets to lungs now. Went to bones in July 2011 (I lost 32 lbs.)
Starlover, I think you should give X a try. I just finished my 10th day of my first round and I'm feeling the strongest I've felt since I started. I couldn't even keep down Ensure yesterday but today I had a bite of barbecue (not greasy), slaw, baked beans and a little cake. It tasted really good too!
Europa, I hope you're getting along okay on X. I have been very tired and nauseous but this has been my best day yet! How are you doing w it? I've got to find some cotton gloves and I have no idea where to get them. I did have some sort of spasms and had to see a cardiologist. He gave me nitro tabs to put under my tongue with they happen. I think it has to do with taking hot tub baths so don't do that! The pain is horrible.
Goodnight all and sleep well.
Oh, Starlover, I was running too but now I can't even walk around my house. I am not going to give up though because my cousin who has a doctorate in health education said that I should never stop. I plan to run again. It's the best thing for me just as some love walking.0 -
DancingVegg
I've been on X almost 1 yr. I stared last November. I never stopped having periods. My tumor CA 27 29 was 38 upon diagnosis of mets last Oct. 2012. Every 4 weeks my marker came down a few points every time. By May I was at 21. Had hysterectomy and ooph in May. Tumor marker dropped to 12.6!!!! I should've had the ovaries out long ago. My latest marker is 11.6. If your doc won't do it, get another opinion/doc!!! I am finally starving my ER+ cancer with those ovaries gone and the addition of Arimidex!
I do have fatigue from X. It does take me longer to get to sleep too. I have to take Ativan to sleep or forget it. I n the beginning cycles maybe the first 3 or 4 months, X made me constipated, but not nauseous. And I never had HFS. I've been very lucky on it and pray it keeps working.
Hugs!
LL0 -
That does it. The first fleeting ping of pain, and loss of appetite, I'm demanding a 215 (medical marijuana) card.
still feel fine though...on to day 3...
hugs to all ~0 -
I have been struggling with nausea despite Zofran, compazene, patch,etc. Doc thinks it could be from liver mets not X, but also noticed that when he gave me a huge IV of fluids before I left on this trip the nausea got better. So dehydration must be contributing...only prob is it's hard to stay hydrated when nausea makes me not want to drink anything!
marijuana DID help before I left town when nothing else did!! My state does not allow medical use, but a sympathetic friend from WA sent me some plus a beautiful pipe. Felt like a dork cuz I didn't know how to use it! But it helped trememdously. Wish our state would approve, but until then I guess I'll just be a law breaker and hope they won't bother prosecuting a Stage IV cancer patient!!0 -
Hello All,
Thanks for sharing all of the great info you do. It helps to have an idea of what might happen! I started X 3 days ago. Can't say if I feel worse because of it or not. Have lymphangetic lung mets which are making it harder to breathe daily. Hope the X kicks in soon and starts to shrink this crap in my lungs... Anyone else have lung mets with shortness of breath, and if so how long did it take the X to start working?
Laura0 -
Love for Life,
I noticed that I was breathing better after a few days and not coughing nearly as much. The side effects have been pretty tough though. It will be worth it if it works though.
Good luck to you!!0 -
Thanks Nature Lover! Hope I get a response soon. I'm tired of being tethered to oxygen!0 -
hi naturelover - you can find cotton gloves (and socks) on amazon.com. Probably type in something like foot care products, or feet moisturizers. Also lots of balm products. I've been using aquafor and eucerin. They are sticky, but seem to be working well thus far. I just finished my first cycle of 14/7. Ca 27/29 went down a bit, so I am tentatively hopeful this will work for as long as possible. We shall see...0 -
Hey, LizLemon. Thanks for the info about getting your ooph while on X. I emailed my onc's PA insisting on taking another look at doing it. I feel I'm pretty in touch with my hormonal ebbs and flows and I know the X isn't suppressing my ovaries. I have had zero hot flashes, too. Plus, since its almost the end of the year, I'd love my insurance to cover the procedure. Seriously, it makes no sense to me that I would have a port put in while on taxol but can't get the ooph on X. I see them tomorrow so I hope they will give me the OK.
No HFS or nausea but the fatigue is crushing. I'm really depressed about being so tired.0 -
kebab & lizlemon so happy for both of you!
Hugs all
Ebru0 -
Has anyone had progression with Xeloda but continue to be on it? From last week's scans, the CT scan showed two new vertebrae involved. CT of the liver showed peripheral uptake suspicious for mets but MRI didn't show any uptake and said more than likely benign cystic foci. However, I've got this excruitiating right rib pain from the front ribs to back ribs. I see the onc on Tuesday. I am major confused. I'm also out of xeloda as I should have started my next round yesterday. Oh well, a break from it probably won't hurt me. I just don't know if I'll continue on it or not at this point, I don't know what the onc will do. Maybe a liver biopsy next?
Please send me your thoughts on this? What would you think or do? thanks!0 -
Rangermom....I can't offer any advice but i do know I would wait to see what the onc has to say on Tuesday.....I know it will be a long wait though.....(((hugs)))
I have my 3 monthly scans this morning & I'm a nervous wreck!!!
(((Hugs))
Karen xxxx0 -
Thanks Karen, good luck on those scans. I hope all is the same or even smaller!! Wouldn't that be great
Linda0 -
Xeloda friends, I haven't posted in this thread for months. It seems it just takes me longer to do anything, even posting on a board.
I know some of you are talking about cramps but are your bones just sore? Tonight I put my hand on my back, just rubbing across the shoulder and the bone is just so sore - both sides. My last scans said stable but I don't understand the bones being so sore; not joints just bones.
Now my BIG question. I am scheduled to have a brain scan on Wednesday and I am seriously thinking of canceling the scan. My question is this: are any of you having dizzy spells that thing brings nausea and sometimes a mild headache. A sense of pressure in your head that is different than anything you have had previously. Feeling that your vision is just not "in focus" which can bring on the dizziness. I keep thinking that this is just related to the Xeloda building in my system. I have been on Xeloda since March and my scans showed stable. There has been some evidence that Xeloda does get past the brain barriers - they just aren't sure how much. That fact makes me feel there couldn't be anything going on in the brain with stable on my scans. Have any of you had similar symptoms or have thoughts on this?
My brain scan last Oct. showed that they felt the lesions probably represented meningioma but dura metastases could not be ruled out - follow up scan was recommended. I don't have symptoms/problems every day but frequently. I keep thinking that they would be daily with increased intensity.
Help !!!!0 -
Naniam,
No dizzyness or headaches on the X at all. Please don't cancel the follow up brain scan, it will help get you the answers you need.
Linda0 -
Hi Nanium,
I have always listened to my onc. I trust him to do what he thinks is right for me. Hopefully, you have a good rapport with your doctor too and can feel free to ask him if what you have described are side effects of X. I have had some of the same issues because I haven't wanted to eat that much and have been very weak.
Good luck with whatever decision you make and we will all be here to support you!! I'm glad I reconnected with this site.
Naturelover0 -
Thanks Kessala, I was wondering about the the lotion.......I'm on day 11 of my second cycle (14/7). My onc did lower the dose on day 7 as I was experiencing HFS. Couldn't figure how lotion was able to help the pain......it doesn't!
My entire bottom lip blistered during the first cycle and although my lip is tender, no blisters have formed this time around....yet. I did ask the onc about switching to a 7/7 cycle if the se's continued or worsened. She initially said the 14/7 is recommended........when I told her that there are studies showing the 7/7 cycle to be just as effective (thanks milehighgirl for that info) she said she would certainly consider the 7/7 if that's what I wanted to do. Right now I'm continuing with the lower dosage, as for HFS, although unpleasant it hasn't kept me from doing the things I need to do. 3 more days til my 7 day break!
DancingVeggie, I also have both insomnia and fatigue......mornings are tough and nights would be brutal if it weren't for books!
Naniam, no dizziness......but I do have times when I feel shaky or weak which I think is due to the bone pain in my hips, but that started long before I went on the xeloda. Sounds like the scan can provide you with some answers.......sending positive thoughts and energy your way.
Peace,
Dina0 -
Hi, Laura (loveforlife) -
I was diagnosed with lung mets last March. I was put on Zoladex and Tamoxifen for 6 months when the scans showed growth in the lung mets and lesions on the liver. The doc said forget it, its not working, onto Xeloda.
I noticed my lungs felt better a week after stopping Tamoxifen. I run/jog (slowly sometimes) 5 miles a day, and sometimes have to walk a few minutes
and I'm hoping my lungs and liver clear up soon, too.
wish I would have started Xeloda first. I miss my estrogen.0 -
Hi StarLover,
I'm triple negative, so no tamoxifen for me. Wow - five miles. I'm just happy to get from my bed to the bathroom without oxygen :-)
Laura0 -
Motherflush - I am due to start my 20th session of Xeloda - I am on a 14/7 schedule. My onc has given me a second week off in between cycles a few times now when the feet are cracking and burning. So far it has not affected the xeloda working. The HFS may be irritating and annoying but at least my cancer is stable on it.0 -
I will be through with my first cycle 14/7, tomorrow. Yay! I would imagine that the break will not do much for the fatigue or my lack of appetite, but just being able to not worry about taking pills will be wonderful. So far, besides for a couple of blisters on my lip, and mild tingling and a bit of pain in my feet, I am doing good.
Karen, I hope your scans come out great.
Hugs to everyone!
Euro0 -
After one cycle on xeloda (14/7) both my ca27/29 and my CTCs went down!
The exhaustion - my main se, beside some nausea, is worth it. Has anybody every "adjusted" to Xeloda and been less tired after a while? I kinda doubt it....if my numbers keep going down maybe I'll ask my Onc if I can go to 7/7.
Hope all of you get the same results and then some!
Marian0 -
no, for me the exhaustion is there each round.
Question: if you've got progression on a scan would you continue on Xeloda? Scan showed 2 new vertebrae involvement, but thankfully no liver mets. The bone pain was so bad yesterday I had morphine IV and tomorrow scheduled to see rad onc for consultation to see if rads can be done on vertebrae that have already been radiated. Thinking my biggest lesion is causing some kind of problem on nerves or something else. i see the mo next week again and she's going to tell me what the next treatment is, continuing on the X or something else. I have mixed feelings, for instance good it didn't progress to the liver but not too happy that 2 more vertebrae are involved now. does this mean the X isn't working? Or is the X working enough because the ca is still confined to the bones? What's your opinion please. Thanks0
