All about Xeloda
Comments
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Got the CT scan results back for my wife. She has complemented 3 cycles of Xeloda and on her 4th.
All liver mets are stable and no new mets. The largest tumor has shrunk from 1.5cm to 1.2cm. So happy with the results.
Bone mets are stable.
Her ALP (Alkaline Phosphatase) jumped from 106 to 206 in 6 weeks time since she started Xeloda but apparently thats not cancer related.
Overall happy with the results and some relief until the next scan.
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Letmywife, what good news and what a promising response to Xeloda! I hope it continues on that way for a long long time.
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Letmywifelive,
Awesome! Thanks for sharing.
Amy
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Letmywifelive- I am happy for you. I hope it continues to shrink those tumors and keeps anymore from developing.
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Good news! Insurance overturned their denial so I'll start Xeloda tomorrow. Thanks to everyone for the many recommendations on how to prevent and deal with potential SEs. I hope you all realize what a remarkable, positive support system you are to the newbies!
Marti
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Marti,
That is indeed good news. I hope it's as good to you as it has been to me.
Amy
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Marti - excellent news indeed. Best of luck with your new treatment.
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I get to post my first good news in almost 5 months. Some who have been "with" me awhile, like Deanna and momall, may remember that my TM started going crazy several months ago. Then I failed Faslodex and my chin and right temple went numb. I started Xeloda the first of February and was dx with my first non-bone involvement, which is likely brain fluid. So, all bad stuff for a while. I'm getting #8 of 19 rads to the temple area today.
Saw my MO yesterday and the TM were SIGNIFICANTLY lower. All other blood work was acceptable.
I'm taking the TM as a sign that X and rads are working and there is better news ahead!!!
Woo hoo! And my son and family are here from SF to celebrate with me this week!
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So happy for you, Kaption!!!! That's a remarkable response in less than 2 mos! And great that you can relax a bit and celebrate while your son and family are visiting!
And wonderful news about the great scan results, letmywifelive! Hooray!
And good for you for getting that ridiculous insurance denial overturned, Marti. It's so unfair when insurance companies add to our stress due to their incompetence!
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Anyone else experiencing weight loss? I don't have the weight to loose, they are having me make Boost Shakes and eat more small meals through out the day, any ideas of thing that can help me put weight back on..nothing really sounds good right now.
Oh and I live in WI where medical marijuana is not legal
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How are you Deanna?
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Letmywife, Congrats on the good results!! Sounds like the Xeloda is working and will probably really kick in soon. Everyone says to give Xeloda time to work, but my MO only gave my a month and a half. My tumor markers had dropped 20 points when she pulled me off of it. I wish I would have stood my ground and stayed with it, but I was nervous about the new liver mets growing. She did say I can circle back around and take it again when we get things under control.
Great news Kaption! May Xeloda be the magic bullet you needed!!
Robin
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Robin, thanks.
If you had new liver mets growing then I can understand your oncologists decision. The liver is such a critical organ that they do not want to take any chances. Hopefully the new meds are working for you.
My wife's TM dropped more than 50 points in 6 weeks and no new lesions. So it was not a difficult decision to stay on Xeloda for now.
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LMWL - does your wife have any side-effects from Xeloda?
For me, my side-effects are minor enough to consider the alternative...therefore I'm happy to stay on this drug for as long as it continues to work. Amy
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Amy - only side effect is blackening and drying of palms and under the feet but no cracking or peeling of skin yet. She is on her 4th cycle of the drug now.
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Wow, that's great! She's only 1 cycle behind me with minimal SE - that's wonderful and especially because the drug is working.
Thanks for the update -
Amy
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I just found out that after 3 cycles of 7/7 my tumor markers have dropped too. First good news I've had! I'm also on faslodex and afinitor but I feel like it's the xeloda that really has this effect. I hope it's a continuing trend!
A few of my lesion spots in my spine are pretty tender right now so I was worried it was going the other way. I cried when I found out--of course it was the day after a lupron shot so everything makes me cry
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Hello All,
My mother was diagnosed as stage IV last year with mets to both of her lungs. She had been on Taxol and Herceptin for 8 cycle and it still stable so the Onc will switch her to Xeloda along with herceptin by the end of the month.
I was worried that my mom could not walk from the SE , could you share me some experiences and advice?
Thanks ;
orawan
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Orawan, your mom should have no problem walking from this drug. I haven't heard of anyone not being able to walk due to HFS. Just sensitive skin and discomfort with frictio but cushy socks and shoes help.
Girlwithacurl, are you in a trial? Interesting you are taking Xeloda, Afinitor and Faslodex. Would like to hear more about that.
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Orawan, I'm a newbie to Xeloda, but from what I've observed, as well as having individually different responses to any med, I think a very high dose might put us more at risk for hand & foot syndrome SE. This is something you might want to discuss with your Mother's oncologist. I'm certainly not a doctor, but I've found sufficient research to show that higher doses may not give us any longer progression free survival time than more moderate doses.
And I have a question for those of you who have been on "X" longer than I have. One odd "SE" I've noticed this first few weeks is that my heartbeat seems to pound in my head. Not really a headache, but a constant background "drumming" sensation that sounds/feels like I would imagine high blood pressure might feel. But my BP is totally normal. Is anyone else dealing with this with Xeloda, or can anyone tell me what might be causing it? It's so annoying. Even trying to sleep, it feels/sounds like a drum in the distance, and then I realize it's in my own head.
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Dlb, I agree what you said to JFL.
Yes, there can be palpitations with xeloda. I have a "co-morbidity" as they say because I have high blood presure as well. But since I've been in "cancer town" my blood pressure and pulse have been excellent. Drinking will make BP and palpitations go up, so I only sneak a glass of wine on my OFF cycle weeks.
Keep an eye on it...
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JFL, I'm not in a trial. My first line treatment was Ibrance and Letrozole and, while a few mets seemed to be responding, we found that more bone mets had popped up while I was on it. My onc didn't want to give up on anti-hormonal, so put me on Faslodex and Afinitor. Then after more scans they found that progression had moved to my liver. Since my mets seem so heterogenous, and because I am tolerating the F and A so well, my onc decided to throw in low dose Xeloda as well to cover all of our bases. Now I don't know what is working, maybe all of it, or maybe just one, but I'll keep on doing it for as long as it works!
Deanna, I have a pulsing/thrumming sound in my left ear that seems to correspond to my heartbeat. I believe it is pulsatile tinnitis and started when I was on Ibrance. It's hasn't gone away since I changed treatment and everyone I've asked at the medical center seemed to think it is pretty common. It shows up more at night. Or when I'm thinking about it.
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Girl, thanks for the explanation. Good to know! I moved to Xeloda after liver progression but my bones never became resistant to aromasin/faslodex/ibrance combo. I always had in the back of my head that in the event I had a bone progression on Xeloda but no liver, I would request to add back in a hormone therapy before leaving the drug. I haven't heard of anyone in the US taking hormone therapy with Xeloda (I know Ebru took it, who lives in Turkey) but I did read about a small study indicating Xeloda with hormone therapy had more favorable results than Xeloda alone.
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girlwithacurl, thanks for the pulsatile tinnitus attribution. I'll have to read up on that, but it's still driving me crazy. And interesting that you are on 3 meds. Is that a trial, or just your onc's idea? If the latter, I'm wondering how did he/she got it approved for insurance purposes, since it's not a standard of care tx. So glad it's yielding great scans for you right off the bat!
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Yesterday was a stressful day, but everything turned out well. Praise God. We had an appointment with the Onc to get the results of the first CT scan my wife had in a year. During the interim, only MRI's of her liver had been done. The great news is no signs of the cancer elsewhere (lungs, organs, pelvic region). And, to top that off, another drop in tumor markers. My wife's CEA fell from 35 to 31, totally astounding the Onc who thought that was the end of dropping markers. Even the CA-15 went down a little more.
Now I want to share something, that should not be taken as advice, put purely an observation. When my wife's liver metastasis caused her ascites, the Onc first misdiagnosed it as gas and bloating. After trying everything he recommended, we tried oregano oil, because it is supposed to kill infections in the upper GI tract. Well, it had no benefit whatsoever in that regard, but, we saw the first of the rapid drops in tumor markers. So, my wife continued to take oregano oil during her breaks from xeloda (2 weeks on 2 weeks off, sometimes 2 on, 3 off, sometimes 1 week on, 1 week off), and we saw continuing drops in tumor markers. Fast forward around 8 months or more, and tumor markers continue to drop steadily. I chart this on an excel spreadsheet. Consistent drops. Even during the weeks off chemo. Maybe that's normal? My wife stops taking the oil of oregano for 5 weeks. Figuring, what's the point? Next test of her blood, virtually no drop in tumor markers. Onc says that's probably as low as they are going to get. So, remembering the oil of oregano, I get my wife to start taking it during her time off (2-3 weeks) during the next 5 weeks. And lo and behold, a significant drop in tumor markers again. Some 14% drop. Could it be related to the oil of oregano? Can't say, but she will continue to take the oil of oregano during her time off. I don't feel good about combining supplements with time on the drug. By the way, I put 10 drops of oil of oregano in a gelatin capsule, so she doesn't have to taste it. She takes 3 capsules per day, only during her breaks from xeloda. I will report back in another 5 weeks when she gets her blood tested again.
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Starting on my 28th cycle of Xeloda and it's still working! Stable disease in my spine. Next pet/ct, I'm asking for a complete listing of all the mets and their SUV level so I have a better idea of what's going on.
The only symptom I'm having, and that's only occasionally, is itching on the palm of my right hand which might be HFS. Or not. Can't complain.
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Timothy, wonderful news on your wife's CT results & TMs! And that is very interesting about the Oil of Oregano! I actually have a bottle on-hand -- forget what I ever bought it for initially, but I am going to do as your wife has been doing and add some during off week(s). How much is your wife taking?
And WinningSoFar ~ Wow, 28 cycles! I'm so happy for you! That's very inspiring to a newbie to "X!"
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She is taking 30 drops total per day. I am excited to see if we get good results again in 4-5 weeks. This idea however is really out in left field. There is very little research on this subject, and none on live patients. This is really a try at your own risk proposition. I'm thinking an oncologist would scoff at it, and likely recommend against it.
https://www.ncbi.nlm.nih.gov/pubmed/25230257
Second article refers to origanum marjorum, a related species, but not origanum vulgares, which is commonly known as oregono.
http://www.plosone.org/article/info%3Adoi%2F10.137...
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Thank you for those links, Timothy.
I was disappointed not to see Oil of Oregano at least listed in MSK's natural substance compendium -- my go-to resource for balanced information. But here are a few more reputable, interesting links I just pulled up.
https://www.drugs.com/npp/oregano.html
https://jonbarron.org/herbal-library/herbs/oregano...
https://www.sciencedaily.com/releases/2012/04/1204... (re. prostate cancer, but interesting research...)
https://www.sciencedaily.com/releases/2012/04/1204... (re. pancreatic cancer)
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