All about Xeloda
Comments
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As others have noted, my first TM results after starting X were amazing drops. The last two have crept up. You long timers- is this normal?
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Mine have been up and down. Up at the last check about 40%. Time before that, they went down like 50%.
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my TMs tell me nothing Even when I have had a progression, they remain stable and in the normal range A lot of oncs don't have much faith in them Have been told they are more reliable for cancers other than breast
Nel
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TM's are not always reliable, but in my case it was how I learned of my mets. Never had any symptoms and still don't, after 3+ years of stage IV.
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My TMs have been very accurate so far- looking at trends-not the numbers.
Each time they rise- I have progression.
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Me too. Rising TMs have always signaled progression looming, even if it wan't obvious for a few months and I stayed on whatever regimen I was on until the picture was clearer.
SP, hooray for yourfalling TMs! And thanks for the great info you shared. Not thrilled to now picture leaking capillaries, but knowledge is power, and it's good to understand what's happening
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Kaption- after 4.5 years on Celoda I have found that I have a normal range for my CA 27 29. I go up and down within that range. We watch carefully and start to worry when the number rises 3 consecutive times. Luckily for me, they usually fall back down. My markets numbers have never been extremely high but they have been consistently within my range. We don't chase s number if my scans are good. So I wouldn't worry unless the next one is up again. Then I might ask to have scans sooner than later.
If you don't already, keep track of the numbers so you ban figure out what your baseline and normal range is.
Infection, inflammation and other things can also elevate tumor marker levels.
So I would keep a watch on the numbers but would not assume the worst.
Of course this is easier said than done. I just came off a month of worry because mybmatkers were up 3 consecutive draws and were the highest they'd been in 4 years. It caused me lots of worry especially when my oncologist started talking changevof treatment. Markets are back down and scans are good. We don't have any idea what caused the higher numbers. I just glad they are back down.
I hope that your increase in numbers is not indicative of anything.
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Deanna, I was told about leaking capillaries in the hands and feet. But since I have been on Xeloda I developed a half dollar size of broken veins on my leg. I was wondering if anyone else has had this. It was after I flew on an airplane and my legs always swell. I don't think it will go away. Maybe due to low platelets? I was told by my MO at Dana Farber that Xeloda affects the connective tissues in your hand and feet. When I work a pull hoses to water in the greenhouses my hands get really red. Hubby says no more of that. I could get myself in trouble. Oh well, another job I can't do☹️
Hugs,
Anita
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Yes, Anita, trends is what we measure. My MO uses CEA (long story about why). I don't believe my numbers will ever be anywhere "normal," but the trends have predicted every progression- from Herceptin/perjetta, to Ibrance to Faslodex to now on Xeloda. I'm on a 3 month PET. Schedule. It was moved up once when it was pretty clear Faslodex was doing nothing. She uses scans to confirm the TMs.
I have only had some peeling on my feet and slightly tender fingertips. Nothing major. Have been told to take an aspirin before a plane ride or long car trip. Get out and walk around when possible. Lots of warnings on here about hot water.
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Thanks Kaption. I will keep that in mind. Didn't think about Asprin. That's a good idea. My hands are red and feel little tingle in my feet but nothing I can't deal with. Thanks for the advice.
Anita
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hi everyone. I made it a week on the beach in Mexico without getting HFS. Yes, my feet were sensitive and I had to take extra care of them. I got two small blisters on my feet, but nursed them and they went away quite quickly. One day I walked a couple of miles in my flip flops. That was a mistake. My feet felt like sunburn that night. By the next day they were fine. The two long day trips to the ruins, I wore socks and good shoes and had no problems at all. My hands are 100% fine. And now, alas, my wonderful vacation is over. On July 5 I will see what three cycles of X has done, or not done.
Here are my feet, to prove it. Lol
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Not to be the proverbial "wet blanket," but I started losing all my toenails after a few cycles. I will spare yoou all by NOT posting pictures 😂. Keep in mind I was on a 14/7 rotation. Now I'm on 7/7. Still no toenails, but things haven't gotten any worse.
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Stefajoy. Sounds like a great trip. You deserve a good time. Glad for you and sounds like you survived the HFS. That's awesome!!
Happy July 4th!
Anita
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Stefajoy I'm glad you enjoyed your trip. I lived in Cancun for 7 years and the last time I visited was two years ago. I'm glad you didn't get HFS. I had to drop Xeloda because my feet and my left leg were a big blister.
Aurora
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Photogirl, in an abundance of caution, you may want to get your leg with the broken veins checked out to rule out DVT, especially since it happened after a plane ride. Do you feel any pressure or pain or it is just the broken vein? I hope it is nothing and it probably is nothing. I just mention it because I had DVT related to my cancer and had no idea what DVT was and what my symptoms were caused by before I was diagnosed.
Stefajoy, your trip looks heavenly. Glad you were able to manage your feet with no major HFS issues. Vacation is hard enough on one's feet even without Xeloda! Walking and standing all day long, day after day.
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JFL, I never thought about that. Thank you and I will show it to my MO, I have an appointment soon. No pain just broken veins. Yikes wouldn't want DVT!!
Thanks again,
Anita
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Thanks, Deanna and Anita! Anita, I'm sorry Xeloda is making you change what you can do in your greenhouse. It sounds like you are making the best of it. The phrase that goes through my head as I adjust how I use my hands and feet is 'Work smarter, not harder."
Stefanie, I'm so glad you had a good vacation. Marvelous photos! Chuckling at your posting the happy feet one.
Photogirl, keep an eye on your leg and don't forget you can also go to your PCP or urgent care if your onc appointment isn't soon enough.
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Good news! After three cycles, tumor markers have dropped significantly. Next month is the PET and MRI, which will hopefully confirm regression. I am very relieved, to say the least.
Stefani
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Stefajoy, that is great news!!! Same thing happened to me. I think we are on the same cycle. I'm almost done with my forth round. No SEs yet. The only thing that happens to me is that I get a little tired in the afternoon. Otherwise, I'm going for blood work next week and we shall see if the blood work is still improving. Good luck with Xeloda, maybe we will get a long run on this drug.
Hugs,
Anita
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Stefajoy, how are your liver enzymes doing? Mine became almost normal except for Alk Phos. But that dropped in a huge way to. I don't think I get a CT scan until August or September. My insurance will not pay for a PET scan more than once a year I think. The last one I had to pay out of pocket, thank goodness my husband is a Radiologist and cut a deal with the company he works with and got it down to 2600. Otherwise it would have been 6000. It is really awful, especially when we have to keep monitoring this disease! It really makes me mad! Hope your scan goes good. I'm hoping you get good results!
Anita
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Uplifting seeing all of your positive results, congratulations to you all!!!!!! Inspiring!!!!!!
First cycle down, my liver function improved dramatically and a small drop in tumour markers from 113 to 106, hoping for a little more, but hey they did not go up!
Double dose day today with Navelbine and again on day 8, with a oral dose of Dex to help with the nausea with a good result today...
Interesting read on this Xeloda/Navelbine combo with a 50-67% response rate!!!
Hope the sun is shining in your little corner of the world
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Madame X sure seems like a good drug. My onc is anxious to get me on Ibrance. Me, not so much. Been on X for 2 and 1/2 years. Ibrance would be the last drug for me to try, before going to IV chemo and not sure I will go that route. I've been stage IV for 3+ years and the only complaint I have is the SE's from X. Other than that, I would not know I even had cancer again. I am so grateful for this, don't get me wrong. I'm hoping this means I have lot more time left in me, since I was given 1-2 years.
Wishing you all a long time with Madame X!
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Stefajoy, great news on your falling TMs! And loved the photos from Mexico!
I'm still dealing with some weird vertigo stuff. Hoping it's a SE of X or an inner ear or sinus thing, but I'm starting to become quite worried. Finally emailed my UCLA onc for advice, since I cancelled an appointment with her next week because I am still trying to get scans figured out locally. Also dealing with excessive heat here -- 119 predicted for tomorrow, so I'm just laying low these days...
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Deanna,
Are you checking your blood pressure? Is it lower than usual?
Hope you find the answer to your vertigo. I know how unpleasant that is.
Hugs
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No, Kaption, I hadn't thought of that. In fact, it was a tad bit high at my most recent onc appt, something I chalked off to X. I'll start checking it and see if there's any correlation. Thanks for the suggestion. The first time I had a vertigo episode was the night after I'd needed IV fluids & antibiotics for an infection+severe dehydration, so it was logical to chalk it off to that. Then, about a month later, the morning after we'd come back to sea level after being at 8,000 ft. for two weeks, I had another episode -- again not difficult to dismiss due to the sudden change in altitude. But this week I've felt off 3 mornings in a row -- not as severe as the earlier episodes, where the room was truly spinning, but too "dizzy" to drive, etc. Just praying there's a non-mbc related root cause!
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Deanna,
I've had a fair amount of vertigo related to inner ear stuff in the past (even before the first bc). But, my recent dizziness seems to be low blood pressure related.
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Dlb, Xeloda is known to cause dizziness and even lower ones BP. Keep monitoring it, and keep your MO in the loop, especially if it gets worse.
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BP 102/74. It's never been that low, although that doesn't seem to be in the danger zone. I'm not going to try to self-dx, but will include this info when I talk to my onc. Thank you, Kaption & Lita, for the heads up on this. I had no idea.
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My MO and the Oncology Pharmacist provided me with excellent information and resources when I first started Xeloda. I was given a printout from Chemocare,com,. The information is provided by the Cleveland Clinic in Ohio. There is even a phone number to speak to someone at the Clinic if you have any questions.
The link for the page about Xeloda is: http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx
There are links with info about managing side effects, complementary medicine and eating well. Other forms of chemo can also be researched on the site.
There has been some really great accurate information shared here. Several of the members on this thread are not only wonderful researchers, but also wonderful communicators. These folks are able to explain, in an easy to understand manner, SEs and such without being scary or negative.
There have been a few very inaccurate pieces of advice posted as well - some of which could potentially cause serious problems. I would advise anyone seeking answers to medical questions to validate information found on the boards that is not sourced. The National Cancer Institute, FDA, CDC, American Cancer Society, or an NCI designated cancer center are all good places to find legitimate information. And always consult your MO!
Healing thoughts to all ~ May "X" mark the spot(s) and wipe 'em all out!
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Anita, alk phone are normal. Alt is still a little high, but dropped in half since last months bloodwork.
You are one cycle ahead of me on X. So is Shetland Pony, so we can all compare..although everyone reacts differently. My nurse says she has never seen X not work. From these boards, I think I would disagree. But it seems to be working so far for us, for now.
Xeloda is my fourth line of treatment in six years, so I need it to work for a long time. Looking at your history we have also both been in faslodex and on Ibrance (although seperately for me). Have you never been on an AI?
Stefanie
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