All about Xeloda
Comments
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Lita,
I can tell you from my short time on Xeloda that I've had some joint (knuckles) and shoulder pain as a se. I have not had more back pain. I'm on 7/7 and just finished my second round tonight. Other than a little diarrhea it's been ok so far.
I'll be looking for your additional info. I have some too- getting to join the brain mets girls. More later.
Story about your additional issues.
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Back again. I've just been SO tired lately....xeloda fatigue I guess. Have to force myself to do anything. Of course the rainy weather isn't helping.
PET scan results say cancer is progressing in lumbar spine and pelvic muscles (which have been hurting), and they see stuff in the colon area, so they're going to keep an eye on it. Not happy about that, but hey, it could be way worse I suppose. Compared to what quite a few of you are going thru, I'm not going to complain.
To xeloda newbies, it takes time for your body to adjust. Hfs is no fun, but it can be managed. Watch what you eat on your ON cycle weeks to help lessen diarrhea episodes. I find that if I skip raw veggies and only eat well cooked ones, I do pretty well. Don't eat any fruit you can't peel. No raw honey or raw fish (I miss my sushi so bad!!!). Listen to your body and rest as necessary. Xeloda makes me cold, so have soft comfy long sleeve t-shirts and sweatshirts on hand. Your eyes may dry out, so get some gel tears. Regular tear formulations don't last long enough. You may get some mouth sores, too. Mine are mostly in the outside corners, so keep some cream on hand. Staying well hydrated helps.
So dr wants to keep me on Xeloda for now. Once progression gets worse, we will switch to the hard stuff, not aromataze inhibitors. It will be a portal and IV chemo till I die.
Not raining here today, but quite cold. Staying inside because the cold makes my joints ache more.
Wishing newbies stability and future NED on Xeloda. It has helped many.
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Lita, thanks for taking the time to some good advice. I find your remarks about raw vs. cooked vegetables to be very interesting. My DH cooks Chinese for us several nights a week, and we're vegetarian, so the general content of his cooking is vegetables. We eat very few raw vegetables. Maybe that has helped me. So far I've had very little trouble with X the second time around. However, I just started the second round and I'll have the full two weeks on 4000 mg.
Momallthetime, it is a pretty solid dose. My onc said that if it proved problematic she would put me on a 7/7 cycle. She is really worried about me and hoping this will work so she doesn't have to move me on to something else. I think today I have graduated to more frequent and smaller meals. I'm working on that seasick feeling which I really detest. Oh, well.
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Hello, newbies. Sorry you have to join us here but Xeloda can work very well, sometimes for a very long time, particularly with liver mets.
I am also sorry to hear about your progresssions, Kaption and Lita. Not words we like to hear around here.
Interesting about the raw foods, sushi, fruits and veggies. I do contribute to eat those foods regularly. I am lucky to have been spared any major stomach/bowel issues on X. I believe the daily yogurt and probiotic supplement I take help significantly with that. When I miss taking them, things seem to unwind and digestion problems/pain start
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Lita that really suxX!! If it hurts by the pelvic they would not radiate? D went throught that already. Lumbar, pelvic rads, it really freaks me out, because she still has stuff that came back there, but at this point unless it's unbearable they won't radiate, so it all depends how manageable it is for you. When would the next scans be? Hope Xeloda kicks it the the curb.
Rads are done with.Dani just started again on X, and the rest of stuff.. But last BT last week, well she has it done 3 weeks in a row, because she goes 3 weeks out of 4 to Onco. Anyways, her Alkaline Phosphate went up, ALT/AST is still good. So could something be brewing due to her not being on treatment for a few weeks?
Take good care everyone,
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After all my hemming and hawing about what day to start, I started on Saturday in a panic. My husband and I went to Santa Barbara for the weekend, but I had had a bone scan the previous Thursday and on Friday we found out about plentiful bone progression. So we decided to just start mid-getaway. I still walked about 5 miles in a meandering way that day and am still doing ok today on day 3. No appetite though. How long do I wait before seeing if my new friend Xeloda is working? I'm in a total freakout over so much progression after my miniscule three months on letrozole/ibrance.
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girlwithacurl,
I started X in mid-December and will be getting my first scan on March 6th - so without actually counting, I think it's about a 12 week delay between starting and my first scan.
I have gained about 7 pounds in these weeks since starting. While on Ibrance I lost a good 50 pounds, which was welcomed. I'm still underweight but slowly regaining. I however don't want to gain more so need to start watching what and when I eat.
The hardest part about taking X is remembering. I've missed a couple doses after meals and have had to resort to putting up little sticky notes in my kitchen to remember to take them within 30 minutes of eating breakfast and dinner.
Good luck to you. I hope it works and with few side-effects. My SE have greatly reduced on a lower dose.
Amy
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Hello, Girl with a curl
I understand your worry about the mets. I have completed my 5th round of X. After the 4th round, I had a PET scan which showed that the mets in my spine and skull were stable, no new ones. Praying that your next scan will show no further progression. Many of us have had good results on X. Blessings!
Diane
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So on day 3 of Xeloda, anyone else having joint pain? My knees are hurt SO bad, it hurts to move so I am sitting still, then I hurt more because of not moving...it is an awful mixture. Advil helps some, although my oncologist prefers I take Tylenol, the pain meds help some..but really try to avoid during day..
Morning eating is so tough, try to take my meds before kids get on bus,,,but a 6 am that sucks..
Amie0 -
Yes, Amie. I had joint pain (hands and shoulders) my very first week on X. Wasn't terrible, but certainly there.
I have more trouble timing the second dose since we eat dinner early. I try to make sure I have at least 10 hours between doses. But it seemed like if I took it after 6:00 it sort of messed with my sleep. I was on 7/7 this first month, but I'm being bumped up to 14/7 now. I'll probably have more interesting stuff happen.
No HFS yet.
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Keetmom, I'm having the same problem with the morning meal. Trying to scarf down a hearty breakfast that early is rough. I'm on day 5--some tingly fingertips but nothing too bad yet. Can't tell if if my aches and pains are X, my other meds, or my new awareness of bone mets.
I met yesterday with a MO in charge of a bunch of clinical trials and she was really positive about Xeloda. She has seen a lot of success with it. It was a hopeful meeting.
AmyQ, good luck with your scan, will be think g of you!
Granny, thank you for the kind words.
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Yes, there can be joint pain with X. Advil can help. So does heat.
Chemo amplifies any pain, it seems. That's the problem I'm having with my shoulder...the pain seems way more exacerbated this time around. Very frustrating.
Let your mo know. If it gets worse, u need 2 get the pain managed for decent qol.
Dh has 2 go back 2 work tomorrow. He will open cans 4 me and have dog's food ready to go 2 minimize stress 2 my shoulder. Will stay in pj's all day.
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In an effort to improve her blood counts mMy wife has taken a number of different mushroom extracts, ranging from Maitake D pro 4x, six mushroom hot water extract, whole maitake, chaga tea, and now AHCC. She gets her blood tested at one week out from finishing up chemo, and additionally at two weeks out if there was a problem at one week out, which there typically is.
Prior to starting chemo last summer, as a consequence of FEC-T chemo 6 years prior, her neutrophils were around 1.4. After a month on a combination of maitake D extract, six mushroom blend and chaga tea, her neutrophils went up to 3. After months on xeloda, her neutrophils would typically fall to below 1.0 at one week out. We switched up to maitake D extract alone, at the clinically proven optimal dosage of 6mg/kg of body weight. With that dosage she would get up to 1.4 after two weeks off. After about 6 months we then switched to AHCC at 3.0 grams daily and found the results equalled the maitake, but with less inconvenience of dealing with a liquid extract. The liquid is a challenge if you are travelling.
We now have her on 3.0 grams AHCC per day, plus a low dose of maitake (1/4 recommended dose), a low dose of 6 mushroom extract and chaga tea, to see if there is an additiive benefit. Her blood test yesterday showed her neutrophils at 1.4 at only one week out from chemo. That is the best recovery of neutrophils we have seen to date post chemo.
Now its important to know that more is not necessarily better. When Memorial Sloan Kettering did dosage escalating trials of maitake D extract on breast cancer patients, they found that 6mg/kg was optimal, and that going beyond that, the results were actually suppressive of the immune system. For that reason, we are not exceeding the optimal dosage of miatake, and not even coming close as its combined now with the recommended dosage of ahcc. I am not aware of dosage escalating trials with any other mushroom extract than maitake D, so we don't actually know the optimal dosage for most mushroom extracts in humans. There is research though that shows combinations of extracts do better than one extract alone. It would appear to be confirmed in the latest blood test on my wife.
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Timothy thanks for good info, where do you find all that, in a health food store?
Kaption actually first I posted for you on the other thread, so sorry things changed like this for you. Hope they take care of you asap. I got the idea from you about the 7 days on 7 days off, Dani was having a lot HFS so she switched now to 7/7 I hope this will help her.
Also, her numbers were so low, doc thinks it's the Ixempra and at this time after Rads, she is allowed back on Xeloda but not the Ixempra yet. Her TM's been going up, so I wonder how long these stuff stay in the body, if it's just because she missed a few doses of the chemo she is having this reaction, or is something really going on. If this week the ALP goes up again, then for sure Onco wants her to have the Pet/Ct to see what's up. She had the last one 6 wks ago, so i hope it's enough time to have had the treatment do it's job.
Lita hang in there. So sorry. yeah good advice how Chemo exacerbates everything. So nice to hear how thoughtful your DH is, good for you.
Grany thanks for sharing.
Amy managing Xeloda better now?
GN everyone,
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AmyQ, I hear you on forgetting doses! I have resorted to putting two daily reminder alerts on my iPhone that go off at the scheduled time. Without these, I tend to forget the morning dose and end up taking it really, really late.
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Xeloda update is that ( I've mentioned this on my new board- brain mets) I'm off the 7/7 trials because of the brain lining met. MO wants 2 solid weeks of X before break for 10 rads. Then back to standard 14/7. More chemo, more quickly. If, down the road, she feels we're getting control of the new mets and I'm having significant se, we can always ease off. Right now- full steam ahead with as much as I can endure.
Deanna, if you are checking out this X board you might consider a strong start like that. I obviously have extremely limited experience with this chemo, but believe this is a wise idea for me.
Going to be a rough few months. And I HATE the steroid more than anything I've been on. But, the swelling and symptoms must be controlled.
My best hugs to all. So many seem to be having RO make changes right now. SIGH.
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Kaption, they started me on 14/7 X and I was on that regimen for 5 1/2 months. It is doable, but stay on top of the hfs and make sure you have Imodium on hand.
Now I'm on 7/7 for about 3 1/2 months, and I have had some progression in lower spine, but mo doesn't want to switch me yet. She says we'll try radiation first. As I said b4, I'm OK with that. QOL is more important to me right now.
QOL has been pretty crappy because of rotator cuff and shoulder...can't even drive now. They say it will take a minimum of 6 to 8 weeks, lots of pain meds, muscle relaxants and physical therapy.
It never gets any easier, does it?
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Well, darn it. After taking Xeloda for 3+ years it has stopped working.
Oncologist is now recommending Ibrance combined with Faslodex which I'll be starting in the next week or two. I guess the clinic has to check for prescription preauthorization or some such thing before Ibrance can be ordered.
At a regular follow-up appointment I mentioned new hip pain. Since I haven't been scanned in two years doctor ordered a PET. My hip doesn't look any the worse for wear but my liver lit up again. Oncologist feels when comparing my two-year-old PET and my current PET the liver mets appear to be slow growing. I'm having no liver symptoms. However, we can't just ignore what the scan shows us. So on to the Ibrance/Faslodex combo.
I will continue reading the Xeloda forum if you won't mind. I can always help with side effects information. While I'm sad to discontinue a drug that worked for me so long I won't miss the Hand/Foot Syndrome. Too bad there's not a legal way to pass on my unused Xeloda to someone who needs it. But apparently that isn't doable in Minnesota.
Kessala
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Well, round 1 of Xeloda (7/7 schedule, 3000mg/day) did not go as planned. Day 4 I woke up with a weird lightheadedness, tingling fingertips, fatigue that made my arms and legs feel like concrete and made it difficult to climb a flight of stairs. Saw my MO, had labs done, hemoglobin was fine, WBC too low. She stopped treatment altogether. Since I go on vacation in 10 days, we will wait until after my return to try Xeloda at alower dosage (2000mg/day). Scans are planned for April. Am hoping delay with X (already had 25 high dose rads) doesn't show progression of bone mets.
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Goodbye All,
Xeloda has stopped working for me after only five months! More small bone tumors and bigger tumors in my liver. Bummer. There are lots of wonderful suggestions here and I really appreciated the kindness and support of everyone on this site. My favorite solution for HFS was bag balm with cotton gloves and socks and ice packs under my feet on the days that my feet felt especially hot.
Lita and Kaption I am sorry that you are having progression. It sucks. Lita thank you so much for all of your advice and perspective.
AmyQ, JFL, Momallthetime, Timothy and Letmywifelive thank you so much for your contributions to this thread. I am a bit shy and don't write often but what you all wrote helped me so much!
I am off to find a thread about Ibrance and Faslodex!
Warm blessings Xeloda sisters,
Kimberly
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Best wishes for a long run on your next treatment. Hugs!
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You're welcome, Kimberly. Best wishes for your next TX.
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i have 3neg recurrence in my lymph nodes (mainly head and neck some in abdomen too) and just finished cycle 6 of Xeloda, (7/7 4000 mg day) I'm also in a phase 2 pembrolizumab immuno trial. Hand and foot syndrome is starting to kick in harder each cycle but this last round vertigo popped up and now a big time stomach cramp today. Up until now I've felt relatively normal...good enough to still run swim and be myself. I guess I'm just freaking out because my 3 month CT is next Tuesday and I'm hoping these are side effects and not impending doom!! My stomach cramp hurts all the way into my back muscles. Anyone have SEs like this
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Where in the abdominal area is your cramping, peacock? I've had cramping in the lower abdomen but very rarely in the upper. Any change up in your workout routine?
One last thing, I have found that chemo - even oral, exacerbates any type of pain. You just can't tolerate it as well.
Hoping that your scans shown ZERO progression.
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Has anyone experienced elevate ALP after starting Xeloda ?
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I haven't been with you all very long, but I've been moved on for now. It's been quite an adventure.
Two weeks ago my oxygen level dropped from it's usual 98% down to 91% and I spent all the time in my recliner just breathing. It started on a Saturday night. Sunday we called the 24 hour nurse at the oncologist's office. She said as long as I hung out above 90% I should be okay. That's fine for the person who is breathing normally to say. I survived until Monday, when they sent me to get my usual blood work. Now is was like, hang on until your appointment on Wednesday. I did, and my usually perceptive onc looked at me and listened to me and said to go home and rest. I knew it wasn't going to help me, but was too exhausted to argue. Thursday morning I woke up at 2 am and my oxygen level was 82%. I kicked my DH and told him it was too low. By the time I got up and moving around, it came up to 91%. Not really wanting to go to ER in the middle of the night, we took the number for what it was and stayed home. Next morning my DH called the onc and said he wanted specific criteria from them as to when he should take me to ER. They called back very shortly and said for him to take me in right away and the onc had ordered some tests for me.
I spent most of last Thursday and Friday in the hospital. It was boring, but I felt much better since 24 hours on oxygen got rid of the headache I'd had all week. They didn't come up with an answer for what is wrong with me, but the lung doctor (as he calls himself) and my onc seem to be on the same page that it has to do with my lung mets in some way, although the CT scan didn't show anything new. Sunday afternoon my onc called me! She told me to stop taking Xeloda and come in on Wednesday (local clinic day) and she would start me on Gem/Carbo. Over the course of the week my breathing has improved so I can function better.
Needless to say, I've been slightly less than my usually cheerful self. My sense of humor has returned, so presumably I'm feeling better.
On a brighter note, for two days I've had a very bright red male cardinal come sit on my living room window ledge and visit with me for long periods of time. I figured that he was agitated by his reflection in the glass, but it seems to be more than that. He hangs around as long as I'm in the room. Yesterday he followed me down to my son's room at one point. All the birds have left the feeder for now, so he's sitting up in a tree singing. I whistle at him when he comes to the window.
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Rgc77...what an ordeal! Glad you're better. Hope for more improvement this weekend.
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After a long 14 months, Xeloda has failed me. Scans are clear with lots of progression especially in my spine and chest wall. Next up? Weekly taxol. Will get a port and then start this new show. Disappointed.... I will try to find the energy to read from January 9th on, but it might not be possible. I have known that this crap was growing just by how I have felt.
Best of luck to all of you....
*susan*
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Oh Susan, I'm so sorry. Hugs and prayers!
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Susan, (((hugs)))
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