All about Xeloda
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Hello to all -
I have been a lurker on this site for years! I have never posted, as I felt I had nothing of use to add to the conversations.
Like everyone here, I also suffer the effects of the dreaded HFS, and I think I’ve tried almost every possible remedy I could find. Lately I’ve had some success using a layer of colloidal silver gel - letting it dry - then coating my feet with Egyptian Magic salve. It’s slimy like aquafor, but made from olive oil and beeswax plus other assorted bee products (would NOT recommend if you are allergic to bees though). I find if I use aquafor during those times when my feet are hot and inflamed, the petrolatum just locks in the heat, and I end up with painful blisters. The aquafor works great if you are dealing with dry cracked skin that is not inflamed. I also use solarcaine sunburn spray with lidocaine just to cool my feet down. We all seem to have our own preferences about which remedy works best for our individual issues.
Since reducing my dose from 3000 down to 2000 daily, I have been able to function almost normally - I think 🤔?? Hard to say what “normal” even is anymore.
Denny - I do agree about the folate. I seem to have a problem after eating spinach salads. Feels like I’m walking on a cactus, and my stomach gets extremely bloated. Oddly, I seem to have more problems with the actual folate in foods as opposed to added folic acid
I wish everyone the very best quality of life possible, and I will try to stop being a wallflower and join in on more discussions
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Hi MyShadow,
Love that you joined the conversation. I found your post extremely helpful as I continue to deal with that darned HFS. I think I indicated in a previous post that it’s my feet... oh lord my feet! They cut my dose down to 2300 mg from 2600 mg a day this cycle as I lost sheets of skin off of my heals the last cycle. Just starting six and we will see!
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MyShadow--welcome! I just wish that my onc would believe me about Folic Acid in foods. I gave the PA a print-out about it.
My specialty pharmacist told me to only use Aquaphor, even when the skin is broken(unless I have signs of infection). And to use Bacitracin and Betadine less often. And it does seem to help to let my feet exposed to air.
I have been off X for almost 6 weeks and my feet are finally looking semi-normal except for my yucky toenails. I got my second Pfizer butt-shot on Thursday and will wait for a full 2 weeks after that to resume my Xeloda at 1,500 a day.
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Thank you Sadies and Denny!
Yes my toenails are disgusting. They are discolored and seem to peel off in layers. I keep them clipped extremely short. The cuticles on my fingernails are also a problem for me, along with the withered skin on my palms. Before my dose reduction, there were days when I couldn’t even wring out a wash rag without feeling like my skin was going to rip wide open. As much as I hate HFS, I dread the day when I have to change treatment again. Starting over with a new list of side effects to manage—Nooooooo!
Can’t they come up with a treatment that has some good side effects for a change? You know like it keeps your cancer in check, but causes your hair to become thick and luscious- brows and lashes included- is that too much to wish for? 🤪 Not even asking for a cure - just better treatments and better QOL.
As much as I like to complain, I realize there are people in this world suffering far more than I could ever imagine. It humbles me and keeps me grounded when those “why me” feelings get out of control
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MyShadow, welcome! And yes, I so didn't want to change my treatment again so I am happy that I can stay on Xeloda for awhile longer. The next stage of treatment frightens me! So far my HFS is manageable so I accept it. With summer coming and family arriving in a couple of weeks, I will take as much QOL as possible!
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Hi all,
I just started Xeloda/Tukysa (plus continuing Herceptin) three weeks ago. I’m on a 2 week on 1 week off schedule. I’ve been having some minor tingling in my fingertips, but this morning I have tingling and numbness on the backs of my hands, too.
My question is, has anyone gotten neuropathy from Xeloda? And if so, was it this soon?It scares me that it could be from my cancer progressing, so I hope it’s from the Xeloda. Maybe I’ll ask my MO about a dose reduction.
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Superdenovo, I had some during my first cycle of that combo. My Xeloda dose was reduced from 4,000 to 3,000 daily (14/7) and I’ve had no further issues with it. I found most SE’s in the beginning seemed to fade away of the following few months.
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SuperDeNova, neuropathy is definitely a thing with xeloda. I have had it right from the start and I have now been on it for 11 months. Nighttime is the worst, it’s hard to fall asleep when it feels like someone is jabbing your hands and feet with needles
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illimae, good to know, thank you. I’ll assume this is Xeloda and not a symptom of progression. Hopefully a dose reduction and time helps
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SuperDeNovo, I agree with the others. Neuropathy is a Xeloda thing and I would give it a couple of months before requesting a reduction unless your symptoms get severe. Then I would call quick. Otherwise, my symptoms quieted after a short time. I did fet a dosage reduction and am now manageable. on 2500 for 2 weeks on, 1 off.
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Intolight, hmm interesting that you suggest I wait on dose reduction. I’ll consider that.
If time helps, it almost seems like we should start on a lower dose and then increase as your body gets used to it. I’m sure there’s a flaw to that logic though.
Ok, as I’m typing this I developed numbness in my face. That’s a symptom of lepto, scary as I was previously asymptomatic. I’m currently in the hospital due to fever so hopefully this can be addressed quickly. Wish me lick
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Super, only wait if the symptoms are mild enough to give it a little time to stabelize. Your onc is the best source for this answer. Don't reduce just because you think you can. Since you are in the hospital I would ask or at least discuss this with your treating physician as a possibility for your symptoms. We thought I was having some progression but two different scans later it is indetermined so I am back on. I asked about increasing dosage again but my onc says no, that practice shows it rarely changes outcome.
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Intolight, my symptoms are mild. I thought the neuropathy was from the Xeloda but then I had that scary tingling in my face.
It turns out it was likely caused by low calcium, which I didn’t know was a thing. I got IV calcium and it went away. A brain MRI showed stable disease and no progression on the lepto. I’m so relieved.
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Super-that is good news! My onc and pcp follow my bloodwork carefully, and that is a good thing.
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(Cross posted with bone mets thread)
Hello to all,
Well, I am home from the rehab hospital. I've been there since May 1, after my hospitalization at Hopkins and subsequent surgery on my R hip (cancer and arthritis ate through my bones there) and on my L hip (same scenario, just not as bad.) I spoke with my oncologist today and here's the plan. I will see my surgeon next week and talk to my radiation oncologist. We will couple that with xeloda, which is one of the few meds that she says can be used with radiation. For now, we will not be pursuing any other local treatment, such as for my liver. She wants me on systemic treatment ASAP.
Fingers crossed that xeloda goes smoothly. Even though I spent 3 weeks in the rehab hospital, I'm still a mess. Walking with a walker, lots of precautions, etc. to enable the hip to heal.
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BevJen: Thanks for the update. Bet you are glad to be home. I was in the hospital for 12 days and thought it was an eternity and I would never get out. Take it easy and best wishes. At least the weather is getting nice.
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BevJen-prayers for fast healing and effective treatment!
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I received good news today that I was accepted for a grant of $750 through "Living Beyond Breast Cancer". It can be applied towards any of my bills for living expenses. So I will ask it to be applied towards my electric bills. It is for any women Stage 0 - Stage 4, and is a once in a lifetime grant.
I also received word that I will receive an amount unspecified so far from the Susan Komen foundation. The site to google is "TreatmentAssistance@Komen.org".
I was unaware of these two places as far as receiving financial help, until I called CancerCare.org, and was told that the program is closed in my area unless I am Triple Negative. And the lady to whom I spoke told me about the above two sites.
So it is worth it to anyone to contact the above 3 places if financial help is needed.
Sorry that I can't give links to click on, but my computer is not cooperating with me today.
Denise
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hi Everyone, I’m about a week and a half in on my first cycle. I woke up feeling like crap. I feel shakey, like I want to throw up. Over all general feeling of blah. My hands and feet hurt more often. Mostly at night. I just don’t feel good.
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txmom-are you taking the pills a half hour after a high protein meal or snack? The pills work and digest best on partially digested food.
Some ladies put the pills into gelatin capsules to ease the nausea.
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I’m not hungry so. Usually eat a cheese stick and then my pills with some yogurt.
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I just got my scan results back, stable or slight reduction. I am 11 months in with xeloda and when my tumour markers started creeping up I had major scanxiety I'm noweuphoric lol. Tumour markers have also dropped back down and I have another 3 months before the worrying starts up again
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MLS, yippee! Such great news. I am also 11 months in with good results. We can celebrate together
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txmom....I would eat the yogurt and cheese (and something else if possible) , wait a half hour, then take the pills.
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Joyner-great article! I will never let my guard down.
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Thank you Joyner. I work at a winery and there is discussion to allow staff to have the option to wear a mask. I will continue to wear my mask.
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Hi Everyone,
I just want to let you know that I’m feeling better. I’ve been hydrating more, eating small meals. I woke up this morning feeling so much better. X
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txmom, glad to hear it. It's the little things!
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txmom...yay for you!
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