All about Xeloda
Comments
-
@horsegirl1 I’m sorry to hear you lost your completely healthy husband from covid. Those early strains like Delta were awful. You were doing what most people with our diagnosis do , plan. You were looking out for your loved ones. Just wanted to let you know you’re one of the strong here too!
Keep us posted on your throat and what your MO decides to do.Hugs❌⭕️
0 -
@horsegirl1 I hope you can continue with the cocktail or whatever helps you tolerate X since it seems to be working.
@dulcea you are a testament to the strength of women! I've been retired a couple of years but I cannot imagine having to work, especially with children as busy as they are, while enduring cancer treatment. I hope what's after X works well for you and your stubborn liver.0 -
@horsegirl1 I am so sorry to read that and it is an unusual reaction. I would suggest a break for a few weeks, then go to 2,000 at 7/7. I started out at 2,000 and it did work well for me.
That is so very scary. Good luck!
0 -
Thank you everyone for your thoughts and encouraging words and advice.
@horsegirl1 I am trying your advice of Gas-x and I do have some of the oral lidocaine on hand that I used for mouth sores so I'll read and see if I can swallow that. I am getting so desperate with this stomach pain. The worst is at night when I'm trying to get to sleep so maybe it is gas. The more I dig about the side effects of X, the more I see that it just really messes with your entire GI tract. Almost three weeks off X and I am still having these issues. The MO did think it was due to X since it's all over, not just near the liver.
@horsegirl1 I hope you have figured out your "allergy" to X and can continue on with it.
MO was not concerned about the night fevers but said to contact them if I develop any more symptoms.
@denny123 @cookie54 I had an original liver biopsy which turned up breast cancer and an original blood biopsy that turned up two mutations. I made them do another blood biopsy when Verzenio failed as I know things can change, and it actually turned up zero mutations, but my second opinion MO said they are still there, the biopsy just missed them in the collection. The liver biopsy picked up one of them too.
Cookie, thank you for your kind words. I have continued to work mostly because I needed to focus on myself and not cancer. I needed to be distracted from thinking about it all day long, so what better place than a fast-paced fun community doing what I am good at? I have not told anyone at work about my Stage IV so I don't get questions walking down the hall "How ARE you?" or specific questions - and of course advice - to remind me I have cancer. I am ready now though to stay home. It's so hard to get going in the morning. Once I do I am OK but it's hard getting to that place. So then leaving before the school year ends would tip off a lot of people that something was wrong and I would end up with food on my front steps and millions of texts etc. which I don't want. Sorry, but thanks for listening as I put this into words for myself.
I am only "grade 1" liver but they shot up so high after being off X for two weeks, the MO no longer thinks it's just the X. She thought maybe it was a combination.
@soldanella I hope I don't see you too soon in the Enhertu thread and you continue for a long while on X. Thank you for your kinds words as well. I will check back here on all of you. Best wishes everyone!
1 -
dulcea I am so much like you in that I don’t talk to people about my MBC. I don’t want to be seen through that lens. I also like to keep my mind and body busy and I don’t like to concentrate on symptoms. I had just barely started on the X and had to take a break for radiation on my femur. My doctor just started me back on 1500 2x a day 7/7. During the radiation I started having right sided pain between two ribs mid-chest. I attributed it to being pulled up under my arm from the radiation table 10 days in a row. I have had a broken rib there, and it doesn’t feel like that. It feels like the surrounding muscles, since it only hurts when I twist, change positions or do too much with that arm. When it was broken it took six weeks to heal. I can’t decide to baby it and wait it out or consult my doctor. Tylenol and heat help a little and it feels a bit better after sleep? Any suggestions or similar experience?
As for the gas pains, I massage my abdomen in a figure 8 pattern going one direction and then another, use the heating pad and repeat. I also use Gas-X regularly. If I have too much trouble I use a Dulcolax chew. My husband is an MD and he blames that kind of pain on constipation. I always argue, but he is usually right. A good clean out always seems to help for awhile.
1 -
@gigil thank you. Yes, I like to keep my health information to myself, but it's so interesting how nosy people are. Congrats on finishing up radiation!
I had a broken rib too when this all started so I can only speak to that. It hurts consistently for a long time as you know. I thought I pulled a muscle weed-wacking the yard (this was a week before being diagnosed as stage IV). The breast surgeon I was still seeing told me to have my husband do the weed-wacking even though it was right under my implant.
As for your decision-making, I try to play out each scenario in my head. What would happen if you contacted your MO about it? X-ray, CT etc? If they found cancer then what? If they didn't find anything, then what? When was the last time you had your chest scanned? When are you due next? Does it interfere with life? From now on, I always push until I get what I need/want even if the MO thinks it's nothing. I think if you are worried, contact them. So what if it turned out to be a pulled muscle? Then you'll know for sure.
I am not so sure my issues are gas pains/constipation. I got to about 8 months pregnant (that's a lot of bloating!) so I did a clean out. I literally could not button my pants. The next day, I may have dropped to 7 months pregnant but was still in a lot of pain. I noticed some odor while peeing so yesterday got myself a urine test and lo and behold, something is up. They are sending it our for further culture. I hope I can fix this mess with antibiotics! Could all this be due to a UTI? After stopping X three weeks ago, it has become worse, not better.
@denny123 I stopped X three+ weeks ago and have changed to Enhertu. Interestingly, the hand/foot syndrome turned up on my feet during this treatment as red and thickened skin. That's it. Some flaking of my toe tips too but that's it. Now that I've stopped the X, my feet are peeling off in sheets. Weird!
2 -
Has anyone experienced muscle and joint pain when starting Xeloda? i just started four days ago and my ribs are aching like crazy. I am wondering if I should tough it out or call my onc?
1 -
@gigil I have had joint pain in my feet, hands and jaw since I took the X. They are quite bearable. I also had a rib fracture due to metastases, and it didn't heal properly, so I'm feeling a bit of pain. If your pain is really bad, it would be best to talk to your oncologist. Good luck.
1 -
@gigil I definitely have joint and muscle pain at times. I never know if it's X or discomfort from exercise etc. Honestly it can be frustrating trying to decipher the difference. For me I give my body about two weeks of a new mild symptom to figure out what's going on. But agree any pain that is very uncomfortable I would reach out to MO. Plus it may give you some peace of mind, never hurts to ask! Feel better
2 -
Thank you both for the input. I have always given pain two weeks also. If it still hurts then I will definitely look into it The ORSERDU caused such pain in my back. For some reason I didn’t expect that from Xeloda.
1 -
Has anyone been on a 1000 mg dosage twice a day for 7 days on and 7 days off?
0 -
gigil….I started out at 2000 a day at 7/7. For the first 2 years, I didn't take the low-folic food advice and my feet were so sore and infected.
So my onc took me off Xeloda for 7 weeks so my feet could heal. But then my CT showed a new liver spot and I asked to go up to 2,500.
The spot is now gone and I have continued at 2,500 and eating less folic acid foods.
0 -
Hello ladies,
Thank you so much for all your support, and apologies for not replying earlier to your kind suggestions about HFS.the major SE of X for me has been overwhelming fatigue, I just don’t know what to do to feel better. my hands are peeling, and my toes are covered with red and black blisters, which makes moving around really difficult, especially on top of the fatigue. my bloodwork (ALT, AST, Hemoglobin, RBC, RDW, Eosinophil, Basophil, Neutrophil etc) looks concerning, but my MO's PA didn’t seem bothered. have any of you had changes like these, or levels going outside the normal range? the MO and PA keep saying, “This is expected,” but I’m still worried.
I’m concerned about the PVT that has blocked the left lobe of my liver. my abdomen is bloated, and after months of pushing for answers, my MO finally ordered an US.
Dulcea, I’m sorry you had to change treatments, what made your MO to stop X? I really hope you get a good run with Enhertu. are you HER2+?
Denny thank you so much for always sharing your valuable experiences. It really helps.
Be well everyone
0 -
@snow-drop progression on scans on my liver, increasing tumor markers and LFTs jumped up high too so on to Enhertu. I am flying through treatments pretty quickly here.
I don't remember what your dosage on X is but maybe you can discuss lowering it a little with your MO to help with the fatigue. Or it could be due to the blood cells that are out of whack right now. My red cells went down a little but my liver numbers when up. Originally the MO thought it was due to the X but lowering the X and then stopping it didn't change anything. I think it's normal for a few things to go up or down when you change treatments but they only get concerned when it goes too much one way or the other. My LFT numbers are only considered Level 1 or something like that so they weren't terribly concerned at first. But the scan progression put one and one together.
I am Her2(low).
What are they saying about the PVT? Is there something to be done about that? I am dealing with some major bloat too but the US didn't turn up anything. I hope you get some energy back soon!
2 -
what kind of eating plan is low folic acid? It seems like there is folic acid in everything. What are you opinions about Voltaren vs Aquafor? Or is there something better than that for my feet? I am only at the end of week one, have been using Aquafor twice a day. My toes are starting to feel sore. I have one week off coming up on Monday. Will they improve during that week? My top gum is irritated too. I wear dentures and just the top of my gums is very pink. I am on the lowest dose possible and I have been tested to make sure I can metabolize this drug. Do you think these side effects should be showing up so soon, and can I hope they will improve eventually?
2 -
@gigil you can't avoid all folate in foods, and you don't have to. Look to drop high folate foods, like dark leafy greens. Perfect excuse for me not to eat salads because I don't like them anyway lol. But seriously you can google high folate foods and get a idea of what you need to avoid or eat less of. I use Udderly Smooth hand and body cream. they have several different versions of products. My MO recommended it because of its higher urea content. Use your creams many times a day not just once or twice. like every time you wash your hands. I haven't had any mouth sores with X, but you can ask your pharmacist about magic mouthwash. I used it when I was taking IV chemo. Hope things get turned around for you.
0 -
@snow-drop … that doesn't sound very good. What is your dose?
@gigil - I won't use Voltaren since it can harm the liver. And since I am watching what I eat, my hands and feet don't burn at all anymore. Like justsnapd8 said…google to find the highest foods in folate and cut back a bit on those.
This is what I can and do eat—--iceburg lettuce and red lettuce, onions, potatoes, carrots, apples, peaches, plums, watermelon, green and yellow beans, cauliflower, squash, peppers, tomatoes, cukes, strawberries, blueberries, cabbage, eggs (1-2 a day). I even eat the high-folic foods, but in moderation. A lot of those have high folic, but I only eat 5 strawberries at a time, etc.
Your week off will be worse since you will have accumulated the maximum dose. I use Aquaphor on my feet night and day, with socks. At night, I use Aquaphor on my hands with food-service gloves. During the day, I use diabetic cream on my hands constantly. If my feet get way too dry, I use Aquaphor with silicone socks that I buy on eBay.
I only get mouth sores if I eat too much citric acid, so try to cut back on that.
What dose are you on?
2 -
justsnapd8 and denny123 thanks for the good advice. I am taking 1000 mg twice a day. 7/7. I just finished week one. I am getting a couple of blisters on one foot , and my inner lips feel a little raw. I have been eating pretty bland. I eat yogurt every day. I am hesitant about Voltaren also. I maybe need to grease up more during the day. Today I went for a big walk with my daughter through a huge mall. We haven’t shopped for a long time and we had so much fun shopping for my granddaughter’s high school graduation. I enjoyed it so much. I have missed doing these things with my daughter. Life has been too busy and serious for both of us. Do you experience improvement during your week off, and will the side effects return my next week on? The side effects haven’t been unbearable, but I want to do my best to avoid them.
1 -
Personally, I have ES for the first 3 days of the rest week, but the energy is gradually returning. I'm continuing to use bicarbonate mouthwash to prevent mouth ulcers and I'm keeping an eye on my hands and feet. On the first day of treatment, I feel very tired, but then my body gets used to it. I prefer a little nap when I can. I've had fewer SEs since I started the treatment in December; it's as if my body is acclimatizing to the drug. I hope it's the same for you.
0 -
@gigil I take 1500 mg twice daily 14/7. I'm on day three of my off week and just now feeling like I have any energy. I haven't had any trouble with my feet and I'm not real diligent with greasing them up, but I try to make sure I keep lotion on my hands. I've had a little tiny blister on my thumb for a while but it hasn't got any worse. My fingertips have been a little sore the last week or so, but seems to be getting better in this off week.
Because the effects of chemo are cumulative, I would expect it to take a few days in your off week to feel more energetic. The SEs will come back, but maybe to a lesser degree. I'm glad you got a shopping trip in! I don't have kids or grands, but I enjoyed going to my 5 yo great niece's dance recital a few days ago. Time with family is a gift. Enjoy every minute of it.0 -
Dulcea and Denny, thank you both for your replies. Thanks to the discussion here, I refused to accept the full dosage that the pharmacy had calculated based on their formula, and instead started on 1500 twice a day (3000), 14/7. I agree that the low blood counts may be the cause of my fatigue. I had an abdominal ultrasound done, and I’ll be seeing my MO tomorrow, hoping I can finally get a clear understanding of what’s going on.
0 -
Hello lovely ladies 💗… I have been reading this thread for some time as I just started Xeloda week ago. Today is my last day of week 1 and so far it’s ok 🙏. I am on 3,600mg per day and 7/7.
I have avoided high folate food this week, but I do miss my salads and wonder if I should just avoid it on my weeks off as well? My energy is on and off, I do have little naps throughout the day, but I am also blaming our rainy weather and I am getting over a nasty virus (pneumonia, fever, body aches, cough…) so I can’t really fully blame Xeloda but just wonder how do you feel on your weeks off and did SE get better over time or do they get worse… just don’t know what to expect?? Are you applying cream on your days/week off as well?
Any tips would be great!!I hope this treatment works and pray for good results 🙏
1 -
@vik2ri I'm taking 3000 mg daily 14/7, and right now I'm on day four of my off week. This was my fourth cycle of X. I am still very fatigued. X is still in your system during your off week so don't do anything different. I haven't had any trouble with my feet but my fingertips are very sensitive with this last cycle. I make sure I put cream on my hands throughout the day. I use udderly smooth.
If I was a salad lover I would treat myself to a small salad. Other foods contain folate as well so check those and back off where you can. If you take a multivitamin, check the folate content as well.
I hope X works well for you and doesn't give you too many issues.0 -
Thank you @justsnapd8! I will not do anything different on weeks off and hopefully SE are minimal 🙏
I’ve heard taking it 7/7 is more manageable, maybe talk to your Dr. and see if you can try that.
0 -
@vik2ri Glad to hear your first week wasn't too bad. I am a huge fan of salads, eat them several times a week for lunch. Anyhow I switched from dark green leafy salads to iceberg and it has never caused a flare up for me. I guess you can test it out and see how it goes. I start noticing more fatigue by the evening during my 7/7 cycle. I have taken various doses and I am now on 2,000 per day. I never stop applying cream on my hands (my favorites:Udderly Smooth, Neutrogena Norwegian Swiss hand cream, Aquaphor) as they are always pretty dry. My feet seem to vary depending on how much walking I do and what shoes I am wearing. If any shoes causes friction then I usually have issues a day or two. Overall I have learned to manage and be aware of what may be the cause of a hand/foot issue. I wish you much success with X and minimal SE.
0 -
I am glad that no one has any bad effects so far! Yes, iceberg lettuce is okay and also red lettuce. And now I am growing mesclun and mixed greens and adding those to the iceberg hasn't bothered me at all. After watching my folic acid foods for 5 1/2 years, I am pretty good at knowing what will harm me.
The week off is usually worse since you had the max dose the previous week and it will stay in your system for your entire week off. So it is necessary to avoid folic acid foods and also to continue to use Aquaphor, etc., even on your week off.
I quit taking my multi-vitamins since they contain folate and my onc said that I really don't need them anyway. They always test my bloodwork for the various necessary vitamins…C, D3, B12, etc.
If you get a bad toenail or fingernail infection, use Betadine and a bandaid for a few days. And then use Bacitracin.
I get mouth sores from citric acid foods, so I have to avoid those in excess. Moderation in everything is the key!!!
I am always tired, but my 23+ years of chemo will do that.
The good news is that my latest CT scan shows that I am still NED….Herceptin an Xeloda for 7 1/2 years has kept me NED the whole time. I was worried because I had been off both treatments for 2 months because my 23 year old chest port gave me sepsis. Now I am enjoying my new port and no longer getting sick after my Herceptin!!!
So I am at 23 1/2 years of MBC de novo and pretty darned lucky!
2 -
So this is weird. I started out at ER+, PR-, Her2+++. But my chest node recurrence was Her2-. I just read in my oncologist's appointment notes that my left breast was Her2+++ and my right breast was Her2-. I never knew that.
2
