All about Xeloda
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Thanks Snooky and Goldie! I dont have a garden and live in the city, so my best access is whole foods
. I try to keep my diet pretty healthy and am in general fairly fit considering the circumstances. I really hope it works for a while.0 -
Here Is the link that Shetland Pony was referring to
https://www.oncologynurseadvisor.com/home/departme...
management-of-hand-foot-syndromes/
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Hi All - Been off Xeloda over 3 weeks. This appeared this morning. I know it could be much worse. But...
Fortunately no pain now.
Thought you would like to see this HFS up close and personal.
Gumdoctor
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Gumdoctor, ii't so weird how this drug affects everybody so differently. My feet never got blisters like that, they are very dry and sometimes I get real bad cracks, usually around the edge of my heal. So bad they bleed. Some pictures on page 313, link below if it works.
Glad yours doesn't hurt.
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Ouch Goldie! My feet are so much better since I use Aquaphor and silicone socks at night.
Leaving soon for my CT scan and will find out results this Wednesday. Fingers crossed for NED status continuing.
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Denny, best of luck to you, praying for a dance with NED another time!
My feet don't look like that now, that was before I used Atrac-Tain, Aquaphor and many others!
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Hi all, Took a multi-year break from the board as I was NED on Ibrance and Faslodex and feeling great. Then, of course, I had a new tumor in my spine, right by the other one. So MO has switched me to Xeloda. I completed my 3rd cycle last week of 4000 mg daily. First couple cycles were ok, some HFS, some nausea, a little diarrhea. The cycle 3 dropped me to my knees. Abdominal pain beyond belief (had to use 2 hydrocodone at night just to get some rest because the waves of pain hit every 15 minutes or so). High abdominal, above the navel. MO has taken me off it for now, getting scans on Wed to see if there's tumor change and to see what's going on in my gut. And of course, if we go back to X, we're going to modify dosing, scheduling (1 week on, 1 off maybe). I refuse to live like this. I was basically in bed or limping around for 2 weeks. Still feel really ill and fatigued and in pain, though I no longer am using hydrocodone for it, as it's a 4-5 now.
Anybody else not able to tolerate X?
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Yes. I made it through 10 total days. Had severe HFS and it did absolutely nothing for my liver lesions. In fact they exploded into over 10 and largest grew from 4-9 cm in 2 weeks. I had to have a port put in and started Abraxane/Carboplatin. We are still figuring out dosages and schedule as I have neuropathy after the first dose...meeting with ONC next Thursday to determine where we go from here...
Feet are still healing from enormous blisters. Had no real GI issues. So sorry you did.
Best wishes for your next treatment...
Gumdoctor
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Oof, Gumdoctor, I've seen some of those pix of poor feet. Hope this new combo will work well for you.
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Hello ladies,
First I want to thank all of you for the wealth of information you share with the world! I read your posts everyday. Your stories are inspiring.
I am struggling with HFS from Xeloda forcing two dose reductions and two delays in treatment. I am about to start my 8th cycle. I get a lot of advice from what you all post on how to deal with this unwanted journey.
One thing I believe is not mentioned often is nail damage from Xeloda (I do remember some mentioning the use of tee tree oil in some posts a while ago). Maybe I just have missed it or maybe it is not that common?
My nails are taking a beating. I have black spots in the corners of my big toenails on both feet, I have developed beau’s lines also. The nurse practitioner said it is possible some of my toenails may fall off in the future. There goes the use of pretty sandals 😭.
I would like to know if anyone has experienced nail problems to the point of the nails falling off and what you have done to prevent or repair the damage.
On my research today I found a product that seems promising: PolyBalm... has anyone used it? Below is an article about it.... if this really works, I am upset that I just found out about it and wish I had started to use it even prior to Xeloda to prepare the nails.
I really want to get the nail damage under control.
Any advice is appreciated.
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Bebecita, I'm not having nearly the level of nail trouble you are (some splitting and cracking of nails so far, and I started X in February of this year). However, I'm very grateful for this information. My nails are gradually getting worse. Let us know if PolyBalm helps you!
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Yay Xeloda! Just had another scan with NED! I am only on 2,000 a day...one week on, one week off. Xeloda and Herceptin has kept me in NED now for almost 18 months.
As a Stage 4 MBC de novo survivor, I have been on chemo for over 17 years. Original liver mets, and a recurrence 10 years ago in my chest nodes.
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That’s awesome, Denny! Keep on doin’ whatcher doin’.
Hola, Bebecita. When you say corners of the big toe nails, do you mean inside front corners? That’s where mine have lifted, making white triangles. The area corresponds to the red hfs area of my feet that wraps from the sole around this part of the big toe. Last summer one of these triangles started to come off, and for a while I used super glue to keep it down. Then eventually it came off, and lo and behold, there was a new nail under there! It grew out and looks like the other one. One pinkie toe nail came off, and has now grown a new strange little nail. There is no fungus; I think it is just part of hfs for me. I read that sunlight is not good for damaged nails (although maybe it would be good in the case of fungus), so if I wear sandals once in a while I use mineral sunscreen on my feet.
I have been off Xeloda for about five weeks while we sorted out my bile duct problem. It turned out to be a tumor blocking it and there is one other active liver spot. Since all the rest is still apparently still controlled by Xeloda, our plan is to add neratinib to Xeloda if my liquid biopsy confirms that there is still a Her2 mutation. Based on my experience after taking an extra week off for vacation, I think re-starting is going to mean newbie symptoms like upset tummy and burning feet for a short while. BRAT diet, cold rinses should help.
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Hello ladies,
To answer your question ShetlandPony the blacks spots are in the nails just where you describe your spots. They look like I bruised them. I guess based on your experience the nails could detach there..the top corners look like white triangles...
Now that the big toenails are growing, do you still have the black spots?
I will start the PolyBalm treatment tomorrow so we will see.
I am going to the beach for a week so I will be extra cautious with the sun.. thanks a lot.
Denny123, Great news! I am very afraid to use chemo but your story makes me understand it is worth the shot.
My scans will be at the end of this month... hopefully I will get good news too.
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Bebecita,
My wife Liz is on her 9th cycle (2 week on/1 week off) and she may loose a big toenail as well. It's hard to tell but it started a couple of cycles ago and it seemed like a there was no new nail growth from the cuticle end. Now it seems like there is a new nail coming in but she hasn't lost a nail yet.
Denny, GREAT news about your latest scans!
Prayers to all of you!
Grant
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Denny, so so happy for you. Stage IV de novo for 17 years is just amazing!
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Thanks all! Mid-December will start my 18th years as a Stage 4 MBC survivor.
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Denny -- Congrats! That is amazing news!
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Congratulations on good news, Denny! I’m on the same schedule as you—2000, 7 days on, 7 days off, on Cycle 4 (8 weeks, so far).
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Update: Am on a break from X after 3rd cycle was so hard. Had PET/CT scan Wed and newest tumor has shrunk from when it was detected a fewmonths ago! Yay. So this means X is doing its job. I have to find out how to manage side effects. I'm at 2 weeks off and still experiencing diarrhea.
Shetland Pony, you mentioned newbie symptoms after your 5 week break. Does that mean the side effects get better after some number of cycles? Looking for hope cuz I hated cycle 3, but if I know I'll adapt eventually, and I push through.
Thanks to everyone who posts. I'm reading this topic with great interest.
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Yes, pearltears, I did find that some initial side effects simmered down after the first few cycles. Namely, my digestive system seemed to adjust to where I did not need to go to the anti-diarrhea BRAT diet so much, and even though I still got redness, my feet and palms did not have the burning feeling they did at first. That said, there are times when only a dose reduction will really help. My onc says the side effects are cumulative. So after my first year on Xeloda, we reduced from 2500 to 2000 because of fatigue. I needed it to feel sustainable. It seems that some oncs start with the body area dosing but are quite willing to lower if needed.
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Denny, such fabulous news and such a wonderful long run! You give us all hope!
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Hi Folks,
Haven’t posted here in awhile, but I try to keep up. Denny, you are my hero. We all need to hear your news. Oh the hope it gives me! Stay strong and thank you for continuing to inspire us.
I have an issue I’m not sure I’ve read anywhere yet. Does anyone else have a sore throat (swollen glands) from Xeloda? I have had a long bout with swollen glands (no fever or anything), and when I brush my teeth, if I touch one, it will bleed. Would like to see if anyone else has this or if this is potentially allergy related.
Thanks.
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booboo1 -- I don't have the first issue, but I was having gums that bleed and pretty bad dry mouth. I switched to biotene toothpaste and a super soft toothbrush (GUM 517 Technique Sensitive Care Toothbrush - Compact - Ultra Soft) & I don't have problems on a regular basis anymore.
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Thanks booboo, and all of the other ladies !!
Sometimes I get a sore right side of my mouth-the gums, and my right ear hurts. Lasts for a few days, then goes away.
X is such a weird med.
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And oh yeah....I get pink spots on the top of my scalp from X, too. Apparently that is very rare. When they get itchy, I use Clobetasol oil on a Q-tip to swab them.
When I had to take an X break for 2 1/2 weeks, the spots went away. Started X again, and they came back....so I know to blame X.
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Not I, BooBoo. My SE are HFS, fatigue (not too bad), and swelling ankles.
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Joyner, I remember you switched from Ibrance to Xeloda. Are you still on Faslodex with the Xeloda?
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Yes, I was on Ibrance and Faslodex. My onc said that both had failed, and he changed me to Xeloda, with the blessing of my onc at Sloan-Kettering. No more Faslodex.
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