All about Xeloda
Comments
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Karina, My hair thinned a lot on Ibrance, and then did some more on the Carbo/Gemzar combo, ( one one round) but most of my hair loss was on Ibrance. I'm on Xeloda now and my thin hair now looks like doll hair. I'd say go for the cold cap, and ask your chemo nurse what they have seen as far as hair loss. I make look into Halo hair. I believe some have tried that? Anyone?
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Karina, I'm sorry for your latest news! Hopefully the new treatment will be the ticket. I was sad to see you were feeling bad again, and then a few posts later that X was not working :-(
I recently switched to 7/7 and I feel a lot better but still dozing off any time anywhere. I feel a little guilty and worried that it won't work w the dose reduction and now the 7/7. I know it's silly. I should have my latest tm tomorrow.
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Forgot to mention that my onc was talking abt a drug similar to Ritalin that helps patients w extreme tiredness. Then he asked if I had a PCP (no) and said that it has potential for abuse. He's so stingy abt drugs so I guess he wants me to ask someone else, like a PCP. I don't even care if I get addicted to something if it helps. As long I don't get cut off abruptly and I've been hearing abt that happening to a lot of ppl.
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HLB, I hear you about drug cut offs. With the opioid crisis, things are getting weird. My MO had stated that even the Cancer Center was getting pressure regarding pain medication for cancer patients. Sheesh, the MO has to fill out 12 sheets of paper regarding why they are prescribing an opioid to a cancer patient. Really! This is another case of painting to broadof a brush. I even get grief from the pharmacy when I take my opioid script in to be filled. Mind you, I have been going to this same chain pharmacy for 7 years.
Wonder how this is going to turn out as time goes on.
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Wanted to share in this thread as it may be of some interest to Xeloda users: my mom's scan's showed progression after the requisite number of cycles on Xeloda (3500 mg daily for two weeks then one off week to complete the cycle, Keytruda infusion on the first day of the Xeloda cycle).
Looks like we're moving on to Gemcarbo after radiation on her painful spine met first.
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Hi ThunderJeff,
Sorry to hear about your mom's progression. What does your mom's onc say is the "requisite number of cycles"? Curious as my MO indicated that we should see a clinical response after 2-3 cycles. I was scanned yesterday after cycle 4, waiting to hear back on the results. My gut says it's not working and we need to move on but the scans will tell...
Pat
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Hi Sadie--praying your scans are looking good.
She went through four infusions, so four total cycles. We had a feeling it wasn't working because her spine pain kept getting worse. The optimistic take was that bone fractures are painful, and pain can be caused by a lot of things, but it's not clear that wasn't the case.
We had the option of pulling her off the tx about two weeks before the scan to get rads plus steroid, but she wanted to make it to the first scan.
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Has anyone had their finger nails completely change. Mine are flat and no longer have that nice rounded curve. When I tried to grow them out they were flat and ugly like someone ironed them.
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Sounds like our MOs agree. I have been having increase shortness of breath and the pain that led us to the progression diagnosis in early October has not disappeared. Rather, it has evolved. I've failed two treatments so far with significant progression in my bones and into my belly so needless to say, don't want to spend time messing around with a treatment that isn't doing the trick, particularly given the side effects. I'm already dealing with two rather painful blisters, one on each heel. Thankfully they are starting to resolve.
Praying your mom's new combo does the trick! Pat
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Hi Everyone,
I had my scans on Friday and got my results. My liver lesion is gone and my bone lesions are stable! My CA 15-3 went from 95 to 38! This is the first good news I've had in 18 months.
I finished 5 rounds of Xeloda before the scan 2 rounds at 3500 (divided) 2 wks on 1 off and then 3 rounds at 3000 (divided), 1 week on, 1 off (2 cycles considered a round) 4+ months altogether.
So I will stay on Xeloda for another 3 months and rescan. I hope I get a long run.
Mary
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Diana,
My finger and toe nails are a mess. I just keep them clipped and live with my less than pretty self. Cotton candy hair, ugly shoes and bright red hands with bad nails. Sigh, I miss the old me, but will take the current benefit of Xeloda.
Mary
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Marylark- so happy for your great scan and tumor marker reduction.
Does anyone know what Xeloda costs. Starting the new year with a huge deductible again.
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Dianarose - on Xeloda my 3 center fingernails turned flat and all of them had the long ridges and the tips of my 3 center nails curled down once a little length was reached. I am off Xeloda 6 weeks now and there is little improvement so far. Also my curl in my naturally curly hair is gone, it is now soft and sort of silky and straight. Don't know if the curl will return. I like this and curly so not too worried, but I also have to say I did not lose hair.
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Dianarose, I have a huge deductible, too. When I called to refill this week, my new specialty pharmacy quoted me something like $800-$900. I asked about a co-pay assistance program, and they said to call that department, which I still need to do. I had easy-to-get co-pay assistance the whole time I was on Ibrance, so that's how I knew to ask.
Side effect report: My fingers are not peeling much now. Interesting how it happened the month I lapsed on exercise, diet, sleep, and stress. But who knows. The burning sensation on my feet does not happen much now, as it did my first few cycles. Fingernails are ok but have hard, sharp cuticles. Big toenails show a bit of lifting but seem stable. I feel like the tiredness is cumulative, and worse during week two. Tiredness is affecting me more than hfs at the moment.
Marylark, I hear you on missing "the old me" when it comes to hair, nails, shoes, etc. Since cancer treatment I have gone in for makeup and fashion in a way I never did during what for others was the "normal" teenage beauty phase. If it makes me look or feel prettier, it is not a splurge but a necessary medical expense! Ha. Not that I buy super-expensive stuff, I just honor my need to feel like I look good for as long as possible by wearing flattering clothes, getting a good haircut, and wearing makeup when it suits me.
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Shetland pony- I am relieved at the price you posted. I know Ibrance was almost 11k and was thinking the same for Xeloda. Hubby has to have his prostate removed next month so I’m sure that will make us reach our crazy deductible.
I have had a lot of anxiety lately. Can’t seem to get a grip on things. The mind can sure play games with us.
Got a call this morning that our nephew had a heart attack and died last night. He has been going through treatment for a rare bone cancer. Makes me wonder if it was the treatment that caused it as he was only in his forties. Going to his funeral will really hit Home. I hate funerals and don’t want one. I just want a celebration of life at the church we were married in.
I think I will feel better once I get a bit more hair. It’s only about a half inch now. Just want to look like a girl again.
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Congrats and commiserations to all.
I have the hard cuticles too. Udder Cream with 20% urea keeps my feet soft but does nothing for the cuticle. Also the swelling does nothing for my ingrown toenail. Got infected less than 12 hours after a self pedi in a quick bath at home.
No more pedis (home or salon:(
No sharing of instruments with family members
10 days of antibiotic, hold xeloda until it heals
I'm shocked how quickly it got very sore and infected. If you search way back, it's not uncommon. Just wasn't aware.
What kind of makeup do you use? I find my face is very dry on X and makeup enhances the wrinkles.
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Zills, yes, anything thick or with powder only makes things worse. My skin is dry and sensitive. And, I am picky about product safety and always check environmental working group's Skin Deep web site. So, I settled on two things for foundation. When I don't need sunscreen, I use a light moisturizing lotion and mix in a couple drops of Cover FX tint, which is designed for this purpose. Viola! Tinted moisturizer made to order. For sunscreen I found a BB cream at the natural foods store that is tinted and has only a mineral sunscreen, not a chemical one. A makeup sponge works well to apply either of these.
I'm sorry to hear of your toe problem! It makes sense that toes would be prone to problems considering the toxic chemo in our feet. Remember to eat your live and active culture yogurt to help your gut deal with the antibiotic.
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Dianarose, my condolences on the loss of your nephew. How terrible. No wonder you feel anxious with all that is going on. And it is so hard when both husband and wife are dealing with serious health issues. There is no easy fix, but for me some things that have helped are yoga, guided imagery recordings by Belleruth Naparstek, and time outside in nature. And distraction with a good book or show.
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I found a yogurt drink that I like and seems to have helped with my digestive system in xeloda. Unfortunately the antibiotic says no diary for two hours. Ugh. Like I'm going to be able to remember that!
I have a BB cream that I loved but noticed it accentuated the lines around my mouth. Kids even noticed. Using a moisturizer and a hydro booster. What do you use?
I used to get compliments on my skin and youthful appearance. I said chemo gives me a spa facial. Now I feel like an old hag with extremely dry skin, red palms, purple spots on feet, lots of swelling. Even noticing red rash on my arms and legs.
But I'm still kicking and hopefully it's kicking cancer's
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I seem to have constant nausea, not debilitating, but I know it is there I have refused Zofran unless it gets to the point where I have to restrict activities Not here yet. foods teas recommendations I have a ginger tea but other ideas
Thanks
Nel
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sills I totally know what you mean feeling like an old hag! I have always looked younger than my age and now w the dry skin, bad hair, wrinkles, etc, ppl don't even recognize me if they haven't seen me for awhile. Especially w the dry eye side effect I cannot wear eye makeup and it has also cussed bags. I look worse than the baggy woman in monsters. I think think that was the movie... like a slutty old trailer park woman.
I had an ingrown toenail that snuck up very quick also. Woke up and could not walk. Luckily they got me in that day and got the whole nail removed. it grows wrong ever since and I'm alway keeping an eye on it, sanding it down etc because I don't want it to happen again. For some reason it started growing very curvy which makes the sides dig in. If I sand the surface to make it thinner and also put cream on it every day it behaves,
Sorry for this getting long but I just got my ca27-29 today and it's 183 down from 822 two months ago! I was on pins and needles hoping the drop would continue because I reduced from 3000 to 2000 and then went to 7/7. I feel a lot better taking it that way so I'm relieved and grateful it's still working.
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Yea for HLB. Sorry about the toenails. Miserable.
The antibiotic is making me nauseous. I can't stand it but don't want to take zofran either. Sick of meds.
Always keep something in your stomach. I love soup crackers and kiX cereal. Feels soothing to eat one by one. Chewed mint gum. Just smelling mint helps. Apples. I made ginger tea with real sliced ginger and added chamomile tea bags. Was good cold. Made a pitcher every day.
My cancer center offers Jin shin Jytsu to patients. It was a lifesaver during iv chemo. Gave me quality of life. Felt it helped the fatigue during ibrance and the diarrhea during xeloda.
https://m.youtube.com/playlist?list=PL3R1sIQwcvVdQ...
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That sounds good. I used to make "tea" w half a lemon, honey, cinnamon and ginger. It was very good and my taste for the ginger got stronger the more I drank so I used a garlic press to squeeze the juice out and threw in the bits after squeezing. Sometimes used the whole lemon too. Just put the ingredients and add hot water to fill it up. I am sick of pills too but if they help I say just say yes to drugs!
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Hi All,
Well, my MO and I have decided to say au revoir to Madame X after four cycles. While my CT came back stable, I have had worsening SOB and the discomfort in my belly and chest is not letting up. With my slow growing cancer, I feel things can continue to go sideways without it showing up immediately on the scan. And my MO indicated it’s unlikely that X will demonstrate benefit with additional cycles. Part of the problem is the location of my cancer, in the pleural lining, which may not have adequate blood flow to really get the full chemo dose.
So, we are opting for a Faslodex. I feel quite positive about this change as I think we have a better chance of putting the genie back in the bottle with a hormone based treatment. I also feel some relief as I was already having issues with HFS and with little benefit from X was likely to develop a bad attitude. 😉
I will pop in to the thread if you don’t mind me checking on you. Now I need to learn the intricacies of the stork pose before my injection.
Hugs. Pat.
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Pat, I'm sorry about the scan results. But I was on Faslodex for four years and it's not hard. There's a series of tips at the top of the Faslodex Girls thread. I put them there and can tell you that they work.
I hope Fas does the trick for you. Bottom's up [as the Faslodex ladies say].
HLB, Mary, congratulations th marker reductions! Sounds like lots of cancer cells have bit the dust.
Nel, I know nothing about nausea except I hate it. When my stomach goes bad it's all over for me. I curl up in a ball and whimper for my mommy. All I can offer is hugs.
Dianarose, my condolences.
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Hi Everyone, I thought I might be off this thread but still here after my visit with my new MO. She seems great. My TMs are still in the 60 range but no movement for a while. CT showed huge improvement on last scan 3 weeks ago so I’m still on X. As far as sore fingers and feet, I’m right there with all of you. I wear cotton socks for my feet, but still the tours and heals are peeling. They burn sometimes but it’s my tips of my fingers that hurt. My MO told me to put lotion on them every time I was my hands. I’ve been on Xeloda for 9 months now. Ibrance failed me after 8 months and liver mets began to show.
Pat, my red counts went down on Xeloda but white counts are good. Feeling a little tired is better than wearing a mask everywhere. When I was on Ibrance it took my White Count very low and that scared me.
Bluebird, I had the same reaction on Ibrance. It worked fast then all of the sudden it stopped. I’m not sure but I developed liver mets while on Ibrance. I question that drug too. I hope you are feeling better.
Thanks for all the info Lindalou and Goldie. Got to get this HFS under control.
Scwilly, I love your border collies. I love to watch them do their work. They are amazing. We have a huge trial for them in Cooperstown every year. It’s amazing how many people come just to watch the field trials.
This was one of my Christmas presents this year but my husband made me promise that I have a plan if something bad happens so my sister is the godmother lol. He is the best thing for me, it gives me something to take care of.
Hugs to all. If I have missed anyone forgive me, I am a little forgetful these day. Wonder why??😂
This is Archie the baby Basset Hound.
Love Anita
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OMG. He is a sweetheart. Thanks for sharing Anita.
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Pat2, so sorry to hear that madam X doesn't seem to be working for you! Other than the fanny pack though, I think you'll find Faslodex an easy regime. Hopefully you'll see a quick positive response!
After no side effects and very little change in my cbc, my NP increased my second cycle to 3 500 mg pills/day. I'm hoping that the slow increase in dose will make let my system acclimate itself slowly and cut down on side effects. Doing nothing for my TMs as of yet, they're over 9000 now. I'm wondering if they are the reason I am so tired, they must be measuring some activity and it seems I'm less tired on those rare recently occasions when they do go down.
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Cive- am I reading correctly that your tumor marker is over 9000?? I was on my death bed when mine were in the two hundreds. Where are your mets, if you don’t mind me asking?
Does anyone experience a lot of upset stomachs and heartburn while on Xeloda? This has only been this cycle, number 5. Makes me worried it’s not working anymore. Go for labs on Friday.
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Oh sweet - a baby! What a lucky boy to get to live with you.
HLB - I have had a toenail like that for years. I was very concerned about injection and HFS with that problem while I was on X. My DNP told me to use a non-metal thingee like a q-tip end and after a foot soak or shower when nail and skin is most pliable to always lift the corner of the nail. Eventually that nail grew straight and a lot less problems. I realize yours is growing crooked after taking X, so different but maybe ths maneuver will also help.
Mixed response - I did not know there could be a mixed response to cancer treatments until it happened to me. Both on Ibrance and then Xeloda. Very dangerous to be looking at solely the positive response and missing the growth of cancer in a major organ. Am still digging out from under the damage done.
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