All about Xeloda
Comments
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That makes total sense, DivineMrsM. It’s been colder here, and they’re a mess. My feet are okay, just my hands. I keep having to ask my husband for help. Ugh.
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Well, xeloda folks, I am officially off of xeloda for now. We could not seem to get the dosage right for me, even though I was on a very low dose, and I was dropping weight like crazy because I just couldn't eat. So as of now, I am on neratinib (I have two HER2 mutations, and this drug is often used for that). Starting within the next week or two, I expect to go back on faslodex (fulvestrant) injections with the neratinib, and we'll see how that goes. Fulvestrant was an easy drug for me -- the neratinib is a bit rougher, but so long as it's not coupled with xeloda, I'm hoping I can handle it.
Good luck to all of you xeloda folks, and I hope this drug is effective for you.
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BevJen, I'm sorry Xeloda couldn't be continued. Please keep us posted with how the neratinib and Faslodex are working. Hugs.
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BevJen, i am sorry Xeloda isn't for you. I got one year on it but only three months on Affinitor before it landed me in the hospital. I am still waiting for my move to Colorado and starting a new oncology team to determine next steps. Meanwhile I am healing and praying we can finally fly out on the 12th. I have a PET scan tomorrow to see if the Aromasin is keeping things quiet and slow in the meantime. It took a while to get over the effects of Xeloda too.
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Intothelight- I am glad you are healing from side effects. I hope your next PET is good and that your move goes well- very curious what is recommended next for you. I am still on Xeloda although TMs are slowly rising, I will get some radiation to a few new spots- the next step for me when I change is Doxil per my MO.
Bev- hugs
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IntoLight and Bev-
Good luck with your moves. And Intolight, with your physical move across the country. I, too, to have just recently moved on from Xeloda. It was a success for 35 months but then tumor markers started to rise and I had another skin met. Too many things slipping through the fence.
I started Afinator and Aromasin on Saturday. I'm also using the dexa mouthwash. So far, so good. Good luck to all of you!
XOXO
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Joyner! I didn’t know you moved on. I wish you good luck. I found it very tolerable. Definitely keep up the mouthwash.
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Thanks, Nkb....taking my 5th round this AM. Hoping, as always, for the best. We had hoped to extend on the Xeloda, but the signs were pointing in the wrong direction for so doing.
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Lynn,
I wish you well on A & A -- not one I've tried yet. I, too, thought you were staying on xeloda, but hope this works for you. Thinking good thoughts.
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Joyner, I hope A/A does well for you. My first scan after 3 months was great. Yes, use the mouthwash. I don't know what I will be on next. I will have a new cancer team in Colorado so it will be interesting what they will want to do. My current oncologist has kept me on the Aromasin only in the meamntime to take advantage of the non-hormonal. My scan today should give a clue.
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BevJen & IntoLight....good luck!
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Thanks, Denny. I was hoping they could get this one right for me, but I am so sensitive to medication that it's difficult to adjust dosages.
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BevJen and Joyner, I’m sorry to see that you ‘re moving on to new therapy. I send all good wishes your way that you have excellent response to new treatment. I will miss both of you. Joyner, thanks so much for all the information you supplied when I first started with Xeloda. I am thinking of you both.
And you, too, IntoLight. Did you say your most recent scan came back great? Good luck with your move to Colorado and with connecting with a new oncology team.
Many hugs to all of you!
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Thanks, Divine. I appreciate your well wishes.
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Good day everyone,
Started Xeloda last week (24 January), of course at the top dosage, and 3 hours later lost everything in my stomach. Oh joy. So, started my own path, 1 the next morning, then 1 morning and evening....stopped at 2 and 2 since my oncologist said he would be happy with that. Still trying to manage the digestive system. One frustration after another.
Best wishes to you all.
Moving
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Moving, sorry about your issues with Xeloda. I haven’t had that issue. I take a Pepcid each morning before I eat and make sure to take the pills 30 minutes after food. I’m also on a 7/7 time frame. They said less side effects that way. You may be doing all of that, but I wanted to let you know. Also, I don’t know if you mean diarrhea or vomiting. I have Imodium on hand but haven’t had to use it. For vomiting, Mae had something she took that helped a lot. Hopefully, she can tell you what it was.
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IntoLight and Bev, thank you and best of luck to you, too! Divine, it has been a pleasure (of sorts....)!
FYI...I'm 6 days into AA and so far, no SE to report. We shall see!
Nkb, you are correct: we weren't going to move on initially after consultations with my onc and with MSK, but shortly after making that happy decision, my blood work looked bad and CA27-29 went up by quite a bit. I called my onc, and she said that she's still be much more comfortable with my making the change to AA...so I am.
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For nausea and vomiting, the usual meds did nothing but the integrative medicine group at my cancer center prescribed Promethazine and it was like magic. Good luck.
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thank you, Mae. I start Xeloda soon so I will ask for Promethezine to have on hand.
I’m also going to get a pair of sea bands to wear. They helped me with Ibrance when I first started.
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Hi All. I am cross posting this from the FB Stage 4 Xeloda group, but wanted to cast a wide net...
I just got the results back from my first MRI since starting Xeloda in November. It was at a different facility and used a different type of contrast, (the comments said "It is somewhat unclear whether improved visualization on this study is due to differences in technique versus progression of disease.")
Generally it seems like everything in the liver stayed about the same, around 11 or 12 tiny spots, the largest is just over a cm. --Yet I had a 40% drop in my 15-3.(Which stayed stable over two months of checking, so only one big drop...then stayed the same)
I have not talked to my doctor yet, but while I wait to hear I thought I do a straw poll ...for those who have had success on Xeloda (esp. multi year success) were the effects obvious and immediate (e.g. within the first 3-4 months,) or did it take a bit of time?
Did anyone take a wait and see approach when tumors didn't immediately shrink? Did it pay off?
We are also talking about a possible y-90 or other local intervention. Has anyone done that? (May be a liver thread question...)
I feel like all scans since diagnosis have been "sort of stable" even on my 2.5 years of Ibrance/Faslodex. I was/am hoping for a similar run on Xeloda! I feel amazing so it seems odd things aren't shrinking
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Pbsoup, I haven’t been on Xeloda for years, only since September of ‘21. My tumor markers were 374, 100, and 8.5. They went down to 149, 97, and 2.2. Great drops. But this last time, they only went down five points instead of the big drops the first two months. I was a little disappointed, but I’ll take any drop. I had an MRI on my lumbar, and it’s stable, no decrease at all, and I just had an endoscopy to see how my stomach is doing. Don’t know the results yet I’ll take stable as well, but it is a little disappointing that my spine isn’t better. I probably won’t ever have a drug that touches my spine. It’s in all of my bone marrow and bones from skull to femurs. I will take stable. It’s probably the best it will ever get.
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KBL- it may take a bit longer. my TMs dropped steadily for 6-8 months before I had my first PET- my bone marrow was packed when I started Xeloda and bones everywhere were involved- at the first PET after 8 months of Xeloda I had almost nothing showing up. My anemia and low ANC and platelets etc were all normal by then- it took at least 8-10 weeks for my severe hemolytic anemia to start to resolve.
I love stable also!
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Thanks NKB and KBL
I guess I was hoping for more immediate gratification on the liver as the spots are all so small. But NKB it sounds like it took you more time than I’ve had to get there.Also I didn’t realize that there are different types of contrast for MRI, and that this can make it harder to compare two scans. Normally I go to UCSF but my oncologist wanted me to go to Sutter as the interventional radiologist who would do the Y 90 is there if we go that route. And he wanted him to interpret the scans (it wasn’t him who wrote this report though)
Still As they knew I was there for a comparison why wouldn’t they use the same contrast as UCSF? The report suggested I have yet another MRI or even PET/CT to confirm the results.
I need to speak to my oncologist of course. I may be in a tizzy about nothing. (Who me??)
NKB you’re in the Bay Area like me. Out of curiosity Where are you treated?
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Nkb, my bone marrow is full too. Unfortunately, at my six-month MRI, it was still packed but stable. I do feel better on Xeloda, so I’m for it working slowly if it has to. I’m on month five, so not quite where you are yet. Here’s to hoping my markers keep going down and me still feeling better.
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For the record, girls, my bone marrow is full of mets, too. Xeloda worked for 35 months for me. I wish that I could say that HNF was gone, but it's still very much present after 29 days of being on Afinitor/Aromasin and after being off of Xeloda for 36 days.
Sending hugs to all, and good luck, Pbsoup!
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Joyner, mets in the bone marrow is new for me--mine just showed up this last scan. I have been off Affinitor since December and stayed on Aromison, the anti-hormonal since then, and off Xeloda for over a year now. I am anxious for my new insurance to kick in so I can meet with a new team.
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Hi PBsoup! I know you from the FB group.
I just have a liver recurrence, and my CEA 135 is only 17, so I guess that I shouldn't be worried. But having a CT scan this Friday. My MP wants to scan the whole liver, and I wasn't aware that the whole liver wasn't scanned before. The tumor is at the top.
So I have to drink the 2 bottles of Barium...yuck.
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For those with it in their marrow, do you have anemia? I've had anemia since before I was diagnosed in May of 2019. Thankfully, it has stayed high enough not to need a transfusion. It is replacing my marrow, so I'm grateful it hasn't been that bad.
JoynerL, that's awesome to hear Xeloda worked for that long for you. I would love that amount of time on it. I haven't had issues with my feet, but my hands are peeling pretty good. Luckily, it's not causing pain. I hope it goes away soon for you.
Denny123, good luck with your scan. I tried the chocolate barium the first time I had a CT scan. It tasted nothing like chocolate. I then went to the berry. Not great but much better tasting. That's what I stick with.
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KBL- I had severe anemia (transfusions every 4 days for 8 weeks) when I started Xeloda. Some of my other numbers were off also- like platelets, but, I think that my explosion of cancer in my marrow was triggered by a severe virus in 2/2020- perhaps covid, but, will never know- it wasn't on people's radar quite then. anyway, the Xeloda has kept my anemia away so far. My HGB kept sinking to ~5.8-6.2. I was always making the cells, just the cancer was destroying them. it finally stopped- on Ibrance my HGB was around 9.6 fairly consistently. With the Xeloda I got to as high as 13.0 some months.
It is so nice to have blood.
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