All about Xeloda
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Grant, thanks for letting us know. Sending love to you and your family-
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thanks for this post. I’m also experiencing the same as you after 10 days on the med. let’s exchange note on what our onco may recommend please. Thank you.
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The county health department just posted on their FB page that they are giving vaccine booster shots to people with certain medical conditions, Listed among them is people taking antimetabolites, which is the class of drugs that Xeloda is in. This should pretty much be issued for all of us then if we live in the U.S. I plan to get the booster. It said to call the department to make an appointment. I called two different times today and got answering machines for two different people and left messages, neither of which has been returned. That’s frustrating. But I have something going on tomorrow morning and afterwards, I’m going to drive down to their office, less than 15 minutes away, and just stop in. I hope I can get the shot then or at least an appt to get the shot.
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Interesting Divine. I'll be watching to see what Canada does. There has been some suggestion of boosters for the clinically vulnerable but nothing definitive yet. I just reached out to my MO (who is on sabbatical but I didn't know who to contact - he responded bless him and will follow up) to see what the recommendations are about work. My employer has had work from home for almost a year and a half but will be migrating folks back to the office. I would really like to go back part time but have no idea how well covered I am. To make things more complicated, we had long gaps between our first and second dose here when supplies were limited. It was almost 11 weeks between my first and second dose plus I had to have Pfizer then Moderna. Oy... trying to figure this out can give anyone a headache!
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I will see my onc this Friday and will ask him to explain my antibody test which shows an 8.9% of antibodies which sounds low to me. But it is flagged as high.
At any rate, I hope to get the booster. But since I have bilateral lymphedema, I have to get the shot in my butt and that really complicates matters.
I am hoping that the hospital where I got my 2 Prizer shots will do it. But I wonder if they will be having the clinic as before.
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I don't know where most of you are. However, I got a notice from my concierge doctor yesterday that I was eligible, as a patient being treated for a "solid tumor" (one of a whole list of eligible categories), for the booster vaccine. I could have gotten either Moderna or Pfizer but got Moderna as that was what I received originally. I received the shot at Walgreen's in a small town in VA, and I was asked to provide my Medicare card, photo ID, and my vaccine card proving receipt of the first two doses.
My PET of August 10th appears to my reading to remain stable. Hoping my onc reads it the same way on the 24th.
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Joyner...YAY for stable!
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Hooray Joyner. (Edited to fix autocorrect).
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Into the Light- Do you know when an abdominal MRI is recommended? I have D and abdominal discomfort (not pain). Do Pet scans give the same information? Does the MRI expected to pick up something different? Just wondering if I should ask for one, or at least discuss it with my MO.
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Nina, I had a PET scan a month ago that showed activity in a specific spot in a node in my abdomin area. The MRI was scheduled to help determine what it is. If I understand my MO correctly, a PET will show cancer activity (where the radioactivity liquid adheres to it) but an MRI will show more clearly abnormal structure in a soft area. "While CT and MRI scans show images of your body's internal organs and tissues, PET scans can give your healthcare provider a view of complex systemic diseases by showing problems at the cellular level. Unlike MRIs, PET scans use positrons."That is why she orders different tests for different indications. I think you should discuss your discomfort with your MO. I also think stomach issues are a common side effect of the Xeloda which I have had for the year I have been on it so it may mean nothing. How often do you get scanned? I know this varies with providers. I get a PET every three months. My MO said this is the new norm for cancer treatment and is more frequent than in the past but is useful to her to compare scans and catch progression early.
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Stomach issues here too. I have been off Xeloda I think three weeks now after two weeks of explosive D and waiting for blood work to return to normal. Had to have 4-hour daily potassium (and some others) infusions for a week--that or be hospitalized. I am afraid D is always going to be an issue with me, but I am starting again tomorrow with lower dosage of 2000 rather than 4000, 7/7. Hope this will work better, but with my constant gastro problems I' not confident I sympathize with others who have problems at either end.. My hat's off to those of you who are getting along well, my MO is a strong advocate of Xeloda.
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Dorothy,
I have been on xeloda since July? at a low dose. My first attempt was at 2000 per day. Had to stop that due to dehydration and inability to eat or drink much. After a short break, I went to 1000 per day, 7 on 7 off. By about day 4 of my on week, I have a hard time eating much at all, but no severe D (I'm also on neratinib.) I saw my oncologist this week, and she's a little concerned that I'm not getting the nutrients that I need (uh probably not???) so she's willing to go down on the dose even more.
I don't think I've heard of anyone at as low of a dose as I'm on, and unfortunately, I still have stomach issues. I will say, however, that xeloda, combined with neratinib, blasted away at my tumor markers. So there's that.
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Dorothy, I've been on 2000 mg 7/7 for 2 1/2 years so far with stability. I wish you the very best.
Bev, I understand that all cancers are different, but my onc has a liver cancer patient who is on 500 mg a day with no progression for years.
Sending my best to you both -
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Lynn,
I had read that when you recently posted it, and that gives me some hope. I don't know if it was the xeloda or the neratinib, or the combo of both, but I had very high TMs last month and yesterday they were down 75%. So I'm willing to adjust and see what happens and stay on the drug if it's that good.
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I’m holding my clenched fists above my head for you!
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Ha, ha. Thanks much, Lynn. I'm still in outpatient PT after my two hip surgeries, so I need a little bit of good news.
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I was just offered a booster shot- since I have a PET on Sept 10 I decided to make an appointment for the booster on September 10th so the vaccine wouldn't mess up the PET (lymph nodes) I am tempted to go ahead before the PET but, I think that it will lead to confusion in the results so will wait.
what are other people doing?
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Nkb-
I am neither a scientist nor a doctor....but were it my decision, I'd wait until after the PET and do it later on the 10th, after the scan. You surely want the most accurate reading possible from the scan. I'm also a stickler for sitting quietly with lowered lights (or more often napping) during the 60 min "quiet time/no reading or electronic devices" before my scan. My onc and the techs told me that reading, etc could cause greater uptake in the brain while the nuclear substance is circulating during that 60 min after injection. That said, I'm pretty much a stickler in general.
Good luck!!
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I got my booster shot on Tuesday. I jokingly told my ds, “I had Covid and I had three vaccine shots; if I die of C’rona now, it’s my time to go!”
I am still cautious but I’m not a recluse. I’m not much for big crowds anyway and have always been one to shop early before it gets busy. The pandemic altered my shopping habits so these days I’m far less in stores anyway. I wear masks when required and I don’t hug extended family members or shake hands with people I just meet, altho they want to shake hands with me. I just smile and politely refer to the coronavirus when I don't extend my hand. I hand wash and use sanitizer.
The resistance of people to get the vaccine is exceedingly frustrating. Imagine if people had objected this much to getting the polio vaccine. It would never have been eradicated and there would have been a lot of avoidable tragedy. But, I can only do my part, it is not for me to police others.0 -
BevJen, I know you have had quite a time, but YES! for the lower tumor markers. No wonder my MO is so insistent I stick with it.
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yes, Joyner- me, too- stickler all the way. ESP after a no carb day- why do anything to mess up the results.
BEvJen- a tremendous hooray!
Devine- there is a tremendous backlash against the non vaccinated here- they won’t be allowed to do many things without proof of vaccines- even outdoor. They should opt to stay home so other people are not jeopardized by them. The polio and first measles shots were federally mandated - you had to get them by law.
I also remain careful and my kids even more careful. We did go to outdoor fairyland with my granddaughter- mask mandate for all over 2 years oldwas very adhered to.
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BevJen, great news! So glad to hear it.
I agree with you all. I am motivated by justice and am a rule-follower my nature. I wear masks still everywhere (except for outdoors when I walk or when with people I know are vaccinated). I have not asked my MO about the booster yet, but probably will when I speak with her next week. I also do not understand the hesitancy to get vaccinated. I think right now tthe USA culture is embroiled in a battle between independent rebellion and respecting others. We need to return to kindness...
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BevJen-Yay for you! Great news.
I am also horrified about the lack of masks in my county. I live in a part of Pennsylvania that tends to demand their "Freedom".
The only store I go into is my pharmacy to pick up needed OTC items. And I have my groceries and miscellaneous items delivered to my house from WalMart. I refuse to go into a restaurant.
I saw my onc today for the result of my CT scan, and it appears that I am still NED (3 1/2 years on Xeloda & Herceptin).
But there is an area of concern in my left hepatic lobe. I had numerous large liver mets in 2004, and my liver has been clear ever since I had 9 months of Gemzar & Herceptin. My onc ordered another CT in 3 months to follow up on that.
And I have to go for a Thyroid test. He had felt a swelling in my supraclavicular area and ordered a scan of my neck. I have been having problems with a fullness. That swelling didn't show anything amiss, but I have a "leftward deviation of the laryngeal structure which also affects my vocal cord".
Always something....
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Just received the results from my MRI (after only four hours) and it looks like I may have progression in my liver and spine. I haven't spoken with my oncologist yet as it came in so fast so we'll see how she reads it. I have been on Xeloda for 14 months so I guess that is pretty good. I'll let you know what I change to.
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IntoLight...I am sorry to read that. When I was on Kadcyla for chest node mets, I remained on Kadcyla even when I had growth.
I wonder if your onc can increase your dose?
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Praying that you're a bad reader... let us know...
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Denny, my onc is reluctant to increase my dose as we decreased it because of SEs. Would it have been better to remain on 3500mg? Who knows. My onc believes in QOL and wants to keep me as comfortable for as long as possible. I am fine with that.
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my onc will not let me go back on xeloda after one tumor grew while I was in it. She said it failed me snd is no longer an option. I will continue to ask if/ when I fail what I am on. It worked great for me for over 5 years prior to the growth of the solitary tumor.
I’d be willing to try it again in a heartbeat. I know it is hard on some but it gave me a good 5 years of NE
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IntoLight....since I figured out that foods high in Folic Acid were the cause of my HFS, I told my onc that I could increase if he wants me to. But I am only on 2,000.
But there are a lot of other chemos that work very well on the liver. Gemzar cleared my numerous and large liver tumors in only 9 months...back in 2004.
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Is everyone Her2- on Xeloda? I was Her2+++ for 16 years until my chest node recurrence turned to Her2- Somatic. Now it looks like a have a liver met recurrence. I am going to ask my onc about an increase in Xeloda to see if that helps. But at this point, we don't know if the possible met is Her2- or Her2+++. 19 years ago I had an extensive liver met problem but was Her2+++ at that time.
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