All about Xeloda
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Dear Denny123, just popped back to see your news. You have been so supportive and an inspiration to everyone with your 'almost' 19 years with BC. You must be a good responder to meds. so I hope the doctors find the correct treatment to get you beyond 20 years!
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HI- Just popping back in with good news- PET scan was clear (No abnormal FDG uptake). YEAH!!!! Of course gratefulness at this news is mitigated by my CA15-3 markers going up- which means they just aren't able to detect anything.... yet. I am also a lucky 18 year MBC survivor and continue to try and live one day at a time and try not to be too fearful of what could be. I'm going to start my 10th cycle of X soon. 2 weeks on and 1 week off, on 2500/per day. Manageable H/F, at least this last cycle (have found one shoe insert that is more gentle to my heel than others). I'm amazed at all the different schedules out there (one friend was on 5 days on and 2 days off and is now reduced to 4 on and 3 off because she is doing so well). My MO doesn't really know much about different schedules. Is there a study out there that says one is better than another?
Also I am only being given a CT/PET scan with no contrast. I'm thinking my scans would be more definitive if I had it with contrast. Will ask my MO tomorrow- may have to go to a different hospital. Mine said they are just waiting for the protocols to be put in place before starting, maybe in a year or two!!! I think it depends on what kind and where the MBC is. Mine has moved around so I think more information is better. Some of mine has turned Lobular. Anyone with Lobular MBC?
Stay Safe, Healthy and find the strength to continue on your healing path.
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Yay Nina!!!
By contrast with your PET, do you mean the stuff that you drink? When I had PET scans, I just got the radioactive stuff in my veins.
I have never heard or read of a 5 and 2 or 4 and 3 schedule for Xeloda. That is strange.
I am not sure what my left side was, but my right side was tubular. Those papers are buried somewhere.
Oh crap-my 8 year old grandson's school is closed until Jan 4. He is quite a handful and I watch him at least 2 days a week and trying to get him to sit still and pay attention to the zoom classes is a real challenge. My county is getting 200 new cases a day. I am in W PA.
He won't wear a mask and it is so hard for me to breathe with one on. I am constantly telling him "6 feet"!
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Nina, yay! I am about where you are. Just ended my 10th cycle, 2 weeks on one week off, 3000mg, no activity on my scans of a PET/CT with the radioactive infusion. However, I am only 4 1/2 years into my dx so you are my hero for perseverance.
Denny, I facilitate zoom school with my 5 year old granddaughter who is also very active and strong-willed, so I feel your pain! They have never opened her school this year, so this is all she knows. She will wear a mask but since she lives with me, we don't wear them in the house. She is beginning to not like school because of the situation which is sad as she is already reading. We give her as much stimulation as possible to keep her engaged, but she is so advanced for kindergarten she knows most of her lessons before the teacher gives them. It is tough to get her to sit still!
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Into-that is a good age, but we have the idiotic common core math which is so hard to figure out. He is also into centimeters, Kilos, etc. I sure didn't have those in school.
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Denny - So sorry to hear the news about your scan.
You are a hero on this thread (I think everyone on here is a hero) so I pray the onc figures out the right treatment to get you another 20 years!Grant.
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Agreed, Grant. How were Liz's scans?
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Hey Lynn - Liz's scans showed a bit of progression in her ribs. She is having progressive pain in her left calf and ankle, We think it's related to some mets they found in her glute muscle a few months ago. It's been radiated but the pain seems to be progressing. Funny thing is that there doesn't seem to be any change in that spot.
Liver, neck, head mets seem to be stable so this is GOOD!
Grant.
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NinaCA- it seems like many people on this site are metastatic ILC- many more than the 10% incidence in BC. Anyway, I changed to 7/7 a few months ago-my MO wasn't a fan of the change, but, my ANC had a harder and harder time recovering from 14 days on- I had to take 14 days off and it barely recovered. My ANC seems to recover from the 7/7 regimen. Not sure if it is as effective- seems to be a regional preference in the regimen. I also get a PET with the FDG -IV only. It seems to pick up my progressions in correlation with my TMs. I don't get them every 3 months anymore. I hope that your PET is the real story. How much are your TMs going up? Have they correlated with your progressions? What did your MO tell you was coming in 1-2 years?
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Nina, great news!! Whew!
A question: what was your treatment between 2003 and 2015? I don't believe that Ibrance was in use until 2016 but may have that date wrong.
Also, what did your onc mean by your comment, "Also I am only being given a CT/PET scan with no contrast. I'm thinking my scans would be more definitive if I had it with contrast. Will ask my MO tomorrow- may have to go to a different hospital. Mine said they are just waiting for the protocols to be put in place before starting, maybe in a year or two!!!"?
Did he mean that in a year or two they'd start using contrast with CT/PET? I only get the CT/PET without contrast, too, every 3 months. I was scheduled for my next at the first of January, but I had a little "flare up" as my onc says, in a periclavicular node, and that got zapped with SBRT in early November. Thus, the CT/PET was put off until 12 wks after the zapping, at the request of the RO.
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Thought you ladies on Xeloda might want to see this if you are taking Metformin with it...
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- NicoleRed: Interesting article. It mentions how Gemcitabine works with Metformin. Is it similar to Xeloda?
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Well, I did it! So far, so (almost) good. Today is the beginning of my 19th year after being diagnosed with Stage 4 MBC de novo. I started out with metastasis to my liver (now clear), then about 11 years ago, I had metastasis to 2 chest nodes (also cleared). Now it seems that I have metastasis to my ribs. I am still hanging in here but 19 years of chemo is a very longggg time. Besides being afraid of death by cancer, I am also haunted by Covid19. As I hibernate as much as possible....
I am currently on Xeloda and Herceptin, but that may change after my April CT scan.
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Denny, congrats! 🎉 19 years is unimaginable for me but wow and yay!
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Denny, congratulations! Your persistence and longevity is admirable and should be a source of pride. Well done!
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Yeah Denny123! Long term treatments are not an easy way of life. Thank you for posting.
P.S. This is my 5th Christmas since liver mets diagnosis. Never..never thought I would see that accomplishment.
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Thanks ladies!!
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Denny123, it is always inspiring to hear of your longevity with this disease! Congratulations on 19 years; yes, that certainly is a looooong time to be living with mbc! You have my admiration!
So now there's a bump in the road; here's hoping that another effective treatment knocks back the rib mets.
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I had PET scans the first few years after diagnosis, had an injectable tracer for that. Then when insurance would no longer pay for them, I started having bone scans and CT scans with contrast. For the contrast, I drank the liquid and also had a dye administered through an IV. Did that many times, then this September, I was not given the liquid. I asked about it and from what the CT tech said, it seems a radiologist team reviewed the type of scans being done in the department and determined that with my type of cancer, the liquid contrast was not needed. And it seems like these reviews were done somehow because of Covid and maybe they were eliminating things that were unnecessary.
Hm. I didn't ask my oncologist about it later, but I will the next time she orders scans. Because it almost sounds as if for a long time, I was given the liquid contrast as a way for the hospital to charge more for a more expensive procedure. I mean, that's the way my cynical mind works. So we'll see.
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I had a question about side effects and dosage. My med schedule is 1500 mg of xeloda twice a day for 7 days, then off 7 days; repeat. Have been on this since about March. This past week taking the meds, my hands burn a bit more. Should I ask for a very small dose reduction, and if so, what would that be?
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Divine....I would wait for a bit before asking for a dose reduction. After almost 3 years on this, I find that my hands and feet burn a lot, maybe once or twice a month.
Then the pains go away. I think that it is the nature of the beast.
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Divine, I agree with Denny. My SEs seem to come and go and have improved after five months. I am also on 1500 twice a day but am on 2 weeks on / one week off.
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I'm on 2000 mg total daily, 1000/1000, 7/7. My hands hurt! Feet look bad but don't hurt as much.
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Coming up on two years. I think that I started at 3000 total, then 2500, and then 2000.
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I started at 2,000 at 14/7. Then was changed to 7/7, still at 2,000. Wondering if my onc will increase X depending on my April scan.
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I'm on 3,000mg Xeloda on the five days per week that I'm getting radiation for my breast tumor. Was on Faslodex briefly prior to this but it didn't seem to work. I haven't noticed any side effects to hands or feet so I wonder if its even getting into my system. I get scanned next week and tumor markers checked so we'll see. I'm half way done with my radiation, 2 1/2 weeks to go. I see my MO today and want to ask her again about Foundation One testing. Has anyone here had it and found something that helped?
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JoynerL: Its encouraging to see that Xeloda has worked for two years for you. Stories like yours and Denny123 are positive to hear about. I was reading about Judy Perkins, who is supposed to be the first and only one to be "cured" of MBC. Why can't there be more like her after all this time?
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Elena, I've had the foundation one testing. It was done when ibrance and faslodex quit working and just before I switched to xeloda.
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Elena, that got away from me. I don't know whether the results of the foundation one test actually provided information which impacted the selection of xeloda. I certainly learned a lot about the genetic makeup of my cancer, however. My oncologist says that when next I have progression, she will do another Foundation One test, perhaps a liquid biopsy?
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Elenas401- Judy Perkins had certain qualities that enabled her to have success. There are so many variables. Maybe someday.
Don't fret about not having H&F from your Xeloda! Consider yourself lucky! Hopefully your scan will show that it is working.
I had Foundation One testing when my Kadcyla quit working on my chest nodes. It showed that Lymparza could be my next chemo. But now that I have bone mets, I imagine that my onc might increase my Xeloda, which I am not looking forward to.
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