All about Xeloda
Comments
-
Hi JFV.
A couple of things. Pajim is absolutely spot on. Fever and body aches can be a sign of infection. In the summer I had a weird chest infection, probably a result of the PleurX Catheter I had at the time. I experienced days where my temp would spike starting in the afternoon. Typically the fever would not get above 38 degrees Celsius and I would go a couple of days with no fever and then bam! It would be back. Incidentally my catheter dried up at this time. When they checked to see if it was blocked that really set things off. All this to say, don’t think that it’s not an infection just because it’s intermittent.
Secondly, while Ibrance does cause a drop in neutrophils, it has not been associated with increased rates of infection. Your existing condition could be playing a role with how you have done on Ibrance. In contrast, Xeloda has been shown to cause neutropenia and increased risk of infection. But, it does not cause issues in everyone. I can’t remember what the percentage risk is but my blood (which had serious issues on Ibrance) did great on the first round of Madame X. I was at 3.7 for neutrophils two days before starting round two (less than 1.5 leads to delay).
Hope this was helpful and that you see big improvements in how you are feeling on this treatment.
Pat
0 -
Well double ugh. But Ibrance would definitely make you more prone to infections, globulin or not. Neutrophils inhibit bacteria. Xeloda doesn't impair the neutrophils; at least my blood work comes back normal.
But with an immune disease, I have zero idea. I did read about CVID -- fascinating. (Not so far as you're concerned I'm sure.)
I hope the next infusion of gamma globulin knocks the fevers into next year.
0 -
JFV, maybe probiotics would help? I think X does a number on the whole digestive system, being a chemo. I think the gut bacteria has a lot to do with immunity. I just ordered some and hoping it might help the eye side effects I'm having.
0 -
HLB, what type of eye effects are you "seeing"?
I just started my second cycle and I, too, am having left eye issues. I noticed this morning that even trying to read these boards my left eye just doesn't want to focus. 0 -
NO1-2mV, I am having dry eye symptoms, like scratchy foreign body sensation, and very sensitive to light. Have to wear dark glasses outside or my eyes will be red and puffy the rest of the day, and now even headlights and trun signals at night really bother the eyes. It's both eyes but R worse than L. also blurry vision. I wear +2.5 readers for close up but now far away is blurry too. Mine started one week after starting X. First I though there was something in my eye and I irritated it, which made me think I had pinkeye, but it just got worse with feeling like sand was in the eye and scratching the eye. I hope it's not starting for you.
0 -
I have some hopefully good news about zeloda! Saw the onc today and my ca27-29 went down by more than half! The numbers were very alarming because while I was on ibrance they went up every month for 16 months, but scans were showing improvement so I decided not to check them. Well in Sept it was 5175 (!!!) and in Oct it was 1935. That was after one cycle of X. I had them drawn today but results taked 2-3 days. Today's will be after three total cycles. Curious to see what that result will be! After the first cycle I reduced from 3000 to 2000 so I hope that will still work!!
0 -
HLB, that's great news about the markers. After the first cycle of X mine went up but my doctor was not concerned. Now I am curious what they will be after the second cycle. Hopefully will start dropping down. Oh well..
0 -
Karina, I definitely think they will be down next time. How are you feeling? I hope a lot better.
0 -
Thank you for asking HLB. While I spend most of the time in bed, i feel a lot stronger now. Go up and down in the house, can sit longer and shortness of breath is better. It is still there though. I think there is improvement, but it;s a very slow process. As long as X is working I can wait
0 -
Karina- my marker went up after second cycle then took a big plunge down after the third. Hang in there.
0 -
My TM's just went up, about 20 pts ea. So upping my dose and hoping for better results on my next labs, otherwise it's on to Ibrance. See onc tomorrow.
Karina, glad you are doing better.
Whoot whoot for those who are getting good results.
0 -
Karina I'm glad it's better. I think of you and the hard time you have being in bed and sob all the time. I wish improvment would happen faster but glad it's going in the right direction.
Goldie I think about you too and how you manage your meds on your own. My onc asked yesterday how much I was taking and I LIED! I didn't tell him I cut back. But he dismisses my side effects so I am doing what I need to do. My foot just started feeling sore this morning and it's day 14 of the cycle. Last time it happened on day 9. I hope you don't have to change meds.
0 -
HLB, don't feel badly. You should tell your onc but he shouldn't say anything. Its his loss if your relationship is bad enough that you can't tell him and he can't accept it. Dismissing side-effects is just crap medical care. That goes straight to my red nucleus. You have to live and live well. Else why are you subjecting yourself to this? For fun?
Karina, I'm glad you are feeling better. Raising a glass towards continued improvement.
My markers went up slightly. This is after 7 cycles and three down-50%-each-time. But the notice looked like the cancer center has changed assays, which would change the result. So I'm ignoring it for now and we'll see what December brings. I'd be happy if they'd just stay even. Today is day 11, cycle 8. My fingers are wrinkling but my feet are holding steady.
Happy Thanksgiving for those of you who live in the United States. May the day pass with fun and harmony with no rude-Uncle-Joe blow-ups.
0 -
Pajim, thanks, I agree with you. Most of the time things go okay with him but sometimes I get frustrated. Yesterdats appt was very good and he explained everything thoroughly when I had a question. But he's not good about side effects and he is stingy with meds. Esp pain meds and ativan. I could have told him but I just didn't want the hassle. I don't like spending time there. Happy thanksgiving!
0 -
Pajim I forgot about the markers. How much higher did they go? I agree I wouldn't worry about it until next time. Luckily I got over watching them like a hawk. I guess after awhile of this we just get a little more relaxed. Sometimes.
0 -
I'm now a member of this club. Tomorrow is my first week on Madame X. 4 am/3 pm pills. I'm dry and so very thirsty. Any recommendations? Have increased fluids and creaming hands/feet. Face and back dry too.
Also wanted to ask if anyone has lymphadema and was it affected by Xeloda? Mine has gone into my hand and am in a glove/sleeve every day.
Stomach's been unhappy most of the day. Lots of gas. I could be the rude guest at thanksgiving dinner. Crossing fingers it's not going to stay this way. I alwaysthink the first round is tough.
I had a good run on ibrance (22 months) with minimal SEs after they dropped my dose to 100. Fatigue was the biggest towards the end of the cycle.
0 -
Blood work was good again today so got the ok to go on vacation . Jamaica here we come 🤗.
0 -
Jamaica?!?!? Awesome!!!! Have the best time ever. In fact, have a drink with an umbrella for me.
0 -
Dianarose. Wonderful news. So glad you get to go on vacation. After all you have been through you deserve the best vacation ever!
0 -
Hi Zills, I have lots of gas at certain times too, and I mean all the livelong day farting. I'm only on 3rd cycle so haven't got everythng down yet as far as what day certain sidee effects start, but none of them last the whole time. Except the eye siide effectts, which I don't think is very common. I have been washing the bottoms of my feet 2 times a day but idk if that's helping or not. They have not been too bad, just one spot that gets sore on each foot, then subsides on week off. On 3000 per day the SE hit me on day 9. At 2000 per day they hit on day 13. (so far). If I feel too bad I skip day 14.
0 -
The week we are on the cruise I am off madam X so I will have some kind of drink with rum and a toast to all of you!
Happy thanksgiving to all you ladies and may you have a blessed day 💕.
0 -
Thanks HLB for the info. No farting today so not the rude thanksgiving guest. Turkey didn't taste good. Came home and napped for two hours.
Dianerose. Have an awesome time! Glad to know I can travel once I get adjusted.
0 -
Saying good bye to Xeloda, the new onc will not hear of taking that with the next line of tx. So here's the story. Have posted part of this on liver mets, reposting a version here to keep from delaying dinner much longer, Hubby hates it when he has it hot and my plate gets cold, hahhaa
I've been off anything for the liver lesions since they were found Oct 2nd. That was a f-up on part of nurses at clinic when it was first prescribed by the onc and then I didn't catch that bcz I decided to delay anyway and have a biopsy first. And more delay due to their f-ups again. I am glad to be away from all that incomplete energy. Nervous as to where I am at. But I am drinking down a huge dose of ellagitannins (Meeker rad and black raspberry powder) daily and using ramp hemp oil, really strong. So hopeful that complementary is helping the Xeloda I was on IF it was working on anything at all. But for the liver, no longer feeling the pain in 7th and 8th lobes, though some in front right sometimes and no longer in front left.
Am now off the Xeloda. The new bc specialist at the new center hugely questions whether Xeloda has been working at all. The liver lesions were growing rapidly. The lymph nodes all were radiated in April/May. Xeloda started at same period. I often wondered too. So I am now going on Afinitor / Aromasin. Had that choice or Taxol infusion 1x week. Or palliative care. He said he did not give infusions to patients in wheelchairs, and I am in one when we go out to places like that, cannot walk much and very weak. Lost 21 pounds in 3 weeks.
It's all turning around now, I feel it. Ate better yesterday, feel stronger today. Could be the Xeloda was kicking my butt too much for my own good and no one was listening. I was so dehydrated yesterday there were 3 sticks to get labs, they only got a little from each one and hard to use veins at that. My skin looked like I am 90. This is my third day off Xeloda.
New center at Goshen is "nice" and I now have under one roof a counselor, a nutritionist, a naturopathic doctor, acupuncturist, and my oncologist. Also met and an appt is being scheduled with a top thyroid cancer surgeon. Though I don't think the nodule in my thyroid that is stopping my voice and eating is cancer, but he is a good choice to remove the thyroid. Director of surgical oncology. Patients COME HERE for thyroid surgery, out of their own areas, his nurse told me he does a lot of those. Top 1% in his class, was employed at both Camp David and National Naval Medical Center in Bethesda, MD. He lives in my area because that is where he and wife were raised. Lucky me. Ran into him in elevator, he is very approachable. It was like a sign.
I said i would fight to stay on Xeloda but after talking in full with new onc I think this is the right interpretation of the mixed results from my scan reading. Nervous, in the sense of making wrong choice. But will begin learning more on the new tx I guess that will have to wait until tomorrow.
0 -
Good news Bluebird ! It sounds like you have found a good place
0 -
I hope everyone had a wonderful TG.
Bluebird, good luck on your next treatment.
My TM's went up about 20 pts on my last labs. Onc is not concerned since I have no symptoms and feel good. So just changing up the dosage, from 1 pill three times a day with no break to 5 pills, 2 wks on/1 wk off.
0 -
I have finally started Xeloda. I am on a super low dose because I had so much trouble with Ibrance side effects. I hope this works ! I've been diagnosed for only six months and the bone mets are spreading. The good news is that even though the cancer is widespread in my legs there are no fractures.
0 -
Hi JVF,
I can relate to wanting see things working. Xeloda is my third treatment since being diagnosed in late December last year. It was expected that I would do well as it has been many years since I was diagnosed. So far it hasn’t worked out that way. Taxol failed, Anastrozole failed (spread more in my pleural lining, bones and spread to my peritonium). I was on Ibrance with the Anastrozole but my blood couldn’t tolerate it either - red blood cells dropped and hemoglobin tanked. Unfortunately, in my case, there are signs that Xeloda is also not working. MO has ordered a CT scan, hopefully for next week. Will know more then.
Hope Madame X hits the bone mets hard in your case.
Pat
0 -
Oh Sandieservant I am so sorry to hear about your disappointment with drugs. You must be so frustrated. Such a sneaky disease. I'm hoping you get good news soon !
0 -
Me too!
0 -
So odd how certain drugs work for some and not others. Wishing you a good run on X SadiesServant. I've been on it for almost 3 years. This is my second treatment from stage IV discovery. First one was Faslodex, didn't get much time on that one.
0
