All about Xeloda
Comments
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Grant, I am so sorry to read this and will pray for both Liz and you as you go through this. I also believe in the Almighty God who can perform miracles. He also sends peace and comfort during our struggles. Chris
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Grant, I too am sorry to hear of Liz's progression. This disease is so unfair. You and Liz are in my thoughts.
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Grant your heart must be hurting tov write about Liz. I am glad you have your faith to provide a sense of comfort while you and Liz navigate this next step of radiation.
There are a lot of us that have been so sick, but have recovered to continue the fighting journey.
You are both in my thoughts.
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BevJen, I just saw your message. My liver lesion was 2 cm and successfully killed with SBRT. But then my liver exploded with mets in just 12 weeks per my June PETCT. My rad onc and I were both shocked. my largest met is 10 cm. (My cancer grows fast when tx fails.)
The disease, so unpredictable. Xeloda was great, esp after the dose was reduced. I lasted 15 months.
My MO wants to hit the liver mets hard and quickly..so Paclitaxol. Y90 is not off the table for future use.
Keep supporting each other.
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Hi- I've been gone from here for a month and so much seems to have happened. DENNY- I'm glad you are back on Xeloda. After reading current info about vaccinations, I'm thinking I should have taken a bit of time off of Xeloda before and or after my covid vaccines. Results are not definitive yet and studies ongoing so it may be a while before we really know- in the meantime I am being cautious. Denny, where did you get the info that Xeloda damages the Cornea? I get more from this website than I do my doctors. TXMOM- Can't believe someone thinks 4000 is low, I hope you can get a more reasonable dosage in the future. SANDI- I feel your panic with such a sudden change. I keep reading about many stories here of dramatic turn arounds with new treatments, yours will be one of them.
EYES ON XELODA- I've had eye issues since last July and believe they are somehow Xeloda related. My MO says maybe, my recent ophthalmologist doesn't know much except to say I have blepharitis (dandruff on your eyelashes) and that even he has it. A different eye doc gave me Bacitracin Zinc eye ointment (prescription) that is great for reducing immediate pain but doesn't keep the condition from coming back. I think it keeps getting restarted by the Xeloda. It goes from dry eyes, to weepy eye, to sometimes red and sometimes normal, mostly in just one eye. Could be related to new allergies affecting my sinuses. I'm on daily oral anti-histamines to control the runny nose and sometimes anti-histamine eye drops (Zaditor). Always using individual Blink eye drops (preservative free) to sooth the eye, especially in the morning to help open them. Is there any evidence that links the Xeloda to specific eye issues or is it all coincidental? Just aging?
Interesting conversation about PET vs CT vs MRi. I had CT's for 20 years until it missed new liver tumors that the PET was able to pick up. Now on PET only. Okay except after a year on Xeloda my PET's are still clear (YEAH) but my markers (CA15-3) have been going up steadily without changes on the PET. I know something is going on there but just not visible. I guess I should be content with the clear PET results and not worry until I have to.
SHOES- I could only wear Dearfoam (Darcy) velour slippers for many months (including shopping and outside walks) to avoid blisters on my feet. I've graduated to Cozy Crocs- they are Crocs that are lined with fuzzy fabric that are more supportive than slippers and my feet now tolerate them. Each month I never know what will happen next. I think the soles and toes have been so well numbed out that the next place I've been feeling is going up the sides of my heels. I use hydrocortisone cream to relieve the "itchy" part of the reaction. It's mostly Aquaphor these days for the hands and feet and other products with Urea (Atrac-Tain, Udderly Smooth- pink jar). I've got several pairs of cotton gloves without fingers to help with tools and touching objects.
And Finally, I am reading that many of you are doing 7 days on and 7 days off on varying strengths of Xeloda. I am 14 days on and 7 days off- that would be 14/7, at 2500 a day (I started at 3000). I am allowed to skip a day or two if I feel like I need a break. Don't know if there is any literature on best timing of Xeloda? I think the initial research was done with 14/7 but I don't know if MO's are just experimenting, if it there experience, or there is more research to indicate other schedules?
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Grant, sorry to hear of the progression Liz is facing. I am not sure how things will unfold for she and you, but I do wish you the best and I know she is fortunate to have you in her corner.
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Has anyone on this forum ever been on both neratinib (nerlynx) and xeloda at the same time or know of anyone who was?
I got a call today from nerlynx (nurse education) and she informed me that my doc is planning to combine these two drugs for me. My onc is supposed to call me later today. I was a little flipped out about the situation. It seems like each drug is pretty strong by itself, so I'm not sure why we're taking this step. And this is an MO who usually doesn't come up with unusual combos. She is very mainstream.
Thanks for any info anyone might have.
Bev
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NinaCA... I finally got out of hibernation to see my eye dr, complaining about mile pressure and pain in my eyes. I have had dry eyes for about 9 years-first on Kadcyla, and now on X.
My dr said that I have Acute Keratitus, that I haven't had before. I have to pry my eyelids open at night and in the morning when I get up.
I have to use these Prednisolone Acetate drops 4 times a day, with Restasis morning and evening. Since my eyes have been worse on Xeloda (on it for 3 1/2 years), that must be causing the problem.
He said to try to stop using my Allergan eye drops (itchy eyes from allergies) since they are actually drying. Our eyes are weepy and teary because they are dry. So they probably made my eyes worse.
Sandi...Taxol is a good chemo. I had Taxotere when first dx'd. My liver was like that too with very fast growing mets. Gemzar with Heceptin is what cleared out my liver in only 9 months.
BevJen....my onc is very excited about Neratinib. Not sure if when Xeloda fails for me that I would take the combo, though. Although oncs do like the synergy aspect of 2 hard-hitting chemos.
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NinaCA- It seems like the west coast seems to use 14/7 schedule and the east coast more of a 7/7. I did read somewhere that after day 8 you get more side effects than cancer benefit- I don't remember the resource- so that snippet comes with a grain of salt. I started on 14/7- 2500- eventually got HFS and dose lowered to 2000 per day. But, the two weeks on and 1 week off crashed my white count and ANC and I was never high enough to restart the Xeloda- I ended up 14/14, but, I was very uneasy on that- for one, it meant that I spent many days with super low counts and also, I didn't want to be off meds for 14 days (I had to do that all the time with the Ibrance) so I convinced my MO to let me do 7/7- she was reluctant, but, agreed. I have had good results and I never have to hold the drug after the week off. I would check any literature from MSK or Dana Farber - maybe other 7/7 folks can chime in.
Eyes dry on and off- haven't seen my eye doctor- they are trying to catch up with demand.
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NinaCa, I started at 3300mg_day, 14/7. I developed blistered feet almost immediately. Dose eventually reduced to 2150mg/day, 7/7. I lasted 15 months and it was very tolerable. Still had to watch my feet, but kept Aquaphor on it regularly and did fine. My MO said the reasom many patients stopped was mainly because of the HF pain, causing them to be off the med more than they were on.
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I started 3 1/2 years ago at 2,000 at 14/7. At the end of that third week, my onc checked my feet, which were sore then.
He lowered me to 7/7 after giving me a 2 week break from X.
Since I have been on chemo since 2003, he wanted to be careful with me. (delicate little me). LOL.
After my 7 week break since I ate too many salads, I started back on a week ago at 1,500 at 7/7. My next dose will be 7/7, and then I will go back up to 2,000 at 7/7.
He did tell me that I have a heck of an immune system. (Probably since I have survived this long).
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Hi Everyone,
Grant, I’m so sorry to hear about Liz. Praying for your miracle.
Denny and Nina, both 20 years with MBC. So much hope.
I met with my local oncologist and he agreed to a dose reduction, to try 4,000 and if not feeling well go to 3,000. So far so good. My MD Anderson Moved me from CT/Bone Scan to PET scan/Bone scan For the past 6 years I have had CT scan and Bone scans. My March scans were stable however it is assumed I had progression as I had leg pain due to a tumor pressing on my L4&5. I had my lumbar radiated and am so much better. No pain. My Dr has switched me to PET scan and Bone scan now as it is assumed I need more sensitive imaging. I don't know why this makes me nervous but it does. 🥺 Has anyone had experience like this? TIA.
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txmom....I have had many PET scans to monitor my tumor growth. I just hate the fact that after they inject the radioactive dye, I have to sit still for 45 minutes. I hate to sit still for any length of time....so I sneak my cell phone in to entertain myself.
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I also have had many PETs, I go early since fasting and take a nap during the 45 minute wait. the hardest part is the low/no carb 24 hours before test.
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txmom, for the last five years I got a PET scan every three months. I got an MRI and CT last month when the PET showed something suspicious that the PET couldn't determine, but the results showed no progression--MRI for bones and CT for soft organs. So I am back on PET.
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I am on Xeloda pill since 5th March 2021, 2 weeks on and 1 week off. I am experiencing hair loss. I heard it’s unusual but in my case it’s true. Is there anyone else with similar experience. Can someone suggest a wig which is very light weight, black/dark brown hair. I already have hair thinning so looking for a wig which doesn’t have thick hair. Hair should be thin on wig and it should look natural, easy to manage
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I am on Xeloda pill since 25th March 2021, 2 weeks on and 1 week off. I am experiencing hair loss. I heard it's unusual but in my case it's true. Is there anyone else with similar experience. Can someone suggest a wig which is very light weight, black/dark brown hair. I already have hair thinning so looking for a wig which doesn't have thick hair. Hair should be thin on wig and it should look natural, easy to manage. Is there a wig shop in Seattle WA
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Vidya99: I too had hair loss but with Taxotere. Once I got off that and onto Xeloda my hair started coming back. Never used a wig but was patient with my hair growing back. You sure it's the Xeloda?
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Yeah, Vidya, make sure they check your thyroid and other possible reasons for hair loss. As far as a wig that is cooler, looks natural, and does not have too much hair, I recommend looking at Ellen Wille lace-front wigs, either online or in a store. In a regular thick wig I look like a country singer (which I'm not and it isn't a good look on me).
Regarding PET scans, that has been my standard scan since mbc diagnosis 6 1/2 years ago, and on my clinical trial I get both PET and CT with contrast every twelve weeks on the dot (it was every nine weeks for the first year). I pushed the boundaries with the pre-scan diet because my blood sugar is never high on routine tests, and I am underweight and hungry. I talked to someone in the PET department, beyond the person who just parroted what the instruction sheet said. I told him, you guys give the same instructions no matter what time a person's scan is. If someone who has an 8:00 AM scan must eat only protein after 5:00 PM and fast from 8:00 PM the night before, why can't a person with an 11:00 AM scan eat regular meals until 7:00 PM and start fasting at 11:00 PM? Furthermore, must I really fast that long? I got permission to have a protein-only breakfast no shorter than six hours before my scan, and I am much happier. Disclaimer: Don't try this at home! Talk to the PET folks about your own situation.
Denny, you are a naughty bad cancer patient to sneak your cell phone in. 😉
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Shetland-LOL...My friend used to scold me, but as I told her...they don't scan my thumbs. I never take a nap while waiting and it sure would help if I could.
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Hi Fellow X-ers -
Sorry - this will be a long post 😬
I have only posted here a couple of times, but follow along with this and other threads frequently.
It appears my relationship with Xeloda has come to an end, so moving on to the next partner in line. Can I just stay single for a while? 😩
I was originally early stage triple positive in 2008, then had recurrence to supraclavicular in 2014, then bone mets in 2017. Now brain and bone since 2020.
My treatments have always been Her2 focused, plus anti-estrogen therapy, until a year ago, when I had progression after 2 1/2 years on Kadcyla + Aromasin. My CEA marker (very reliable) had been slowly creeping up for about 6 months, and scans last June found progression in bone mets plus 1 small 5mm brain met. I was started on Xeloda, Herceptin, and Tukysa - plus SRS to the brain met.
I had bone biopsy, plus a second bone + bone marrow biopsy, and the results came back Er+ / PR- and now Her2 negative (although I believe my brain met was probably Her2+ but no way to verify) So we dropped the Herceptin and Tukysa and I stayed on Xeloda with clear scans until now.
CEA has been creeping up again for about 4 months. PET showed activity in right iliac/sacrum and precarinal space. Brain MRI stable.
My MO suggested Faslodex + Verzenio - which only became an option when I became Her2 negative. I've already tried the other hormone blockers in the past with not much response, but my MO says Fas is different, so it could work, especially with Verzenio.
I have the opportunity to try experimental Leronlimab- though not in a clinical trial. It is an antibody treatment that targets CCR5 receptor, and can be combined with various treatments. So, I opted to try it in combination with Xeloda, hoping to squeeze more time out of it before moving on. I had tumor markers done last week and my CEA is no longer just creeping up - it doubled in just a month! I am scheduled to start the Leronlimab injections on Wednesday, but now I know for sure Xeloda is no longer effective, so I will finish my last bottle and say goodbye. At least my hands and feet will be happy.
I left a message with my MO about switching to Faslodex + Leronlimab. So just waiting to hear back from her. I know I am taking a risk of having a lot of progression while trying this unapproved treatment, but I feel like I at least need to try while the window of opportunity is open. My blood counts are awful, so hoping for some recovery, since bone marrow suppression is not a side effect of this drug. I know my MO would prefer to stick with standard of care, but she is willing to support my decision (reluctantly). If Leronlimab proves ineffective after a few months, I will do Fas + V.
I have no one to share experiences with since very few people have tried Leronlimab. There is a clinical trial for TNBC, but not a lot of info out there as far as results. The company has spread itself thin trying this drug on multiple illnesses, including HIV and COVID - but not very forthcoming on outcomes. Kinda scary, which is why I will only give it a couple of months, unless I see results.
Thanks for letting me share - and I wish all of you the very best. May our treatments be gentle and our results be fierce!
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MyShadow....wow-I feel so bad for you and you are quite the trooper! You have gone through so much.
My chest node recurrence changed properties also, from Her2+++ to Her2- Somatic. I went on a clinical trial of Poziotinib, Phase 2. I was only on the pills for 8 days with severe side effects. But it cleared out my chest nodes quickly.
I pray the Leronlimab works quickly for you.
Faslodex didn't work for me on my chest nodes and I had it along with Kadcyla. But many ladies at my chemo center do very well on it.
You will be in my prayers,
Denise
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Thanks Denny! Your experience with Poziotinib is both amazing and frightening at the same time! And, I must say I feel that YOU are quite the trooper also. Treading into unknown territory is risky, but can also be rewarding.
I have benefited greatly from the knowledge and experience of others on this site, and you are such a source of encouragement and inspiration to so many. Keep on keepin on!
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Myshadow-
I can only imagine how difficult all of this must be. In your court...and praying that Leronlimab will work its magic for you and quickly! Hang in there, girl!
xox
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Thank you JoynerL!
Keeping my fingers crossed!
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Okay, folks,
Looks like I AM going to be joining you all. I just finished day 4 of radiation for my two hip surgeries, and I have another week and a half of radiation left. I've still not been on any systemic treatment for two months, and my blood work and CT over the last couple of days have not been great. My MO is worried that my liver is doing wonky things (but hey, my bones have stabilized even off treatment.) So we chatted today and she wants to start me on 2000 of xeloda a day at least until I finish out my radiation, and then we'll reevaluate.
Fingers crossed that this does something and also that I can avoid both diarrhea and nausea.
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Take it with a full meal that is not challenging to your digestive system (not spicy, fatty, etc.). I found my system adjusted quickly and after a couple weeks I did not have to watch my diet too carefully. Fwiw I think that is a good dose.
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Bev, I agree with Shetland. Did I send you my "Xeloda Primer" by PM? Thinking I did. Will the onc let you do 7 days on/7 days off (rather than 14 on/7 off)?
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BevJen-welcome! I started out and remain on 2,000 a day. I don't have nausea and I do have constipation. But I have found that a diet high in Folic Acid (healthy vegetarian-style food), makes my HFS much worse. A week of big green salads for lunch caused havoc with my feet.
So watch that stuff.
You do have quite a history! And you sure are a trooper!
I was dx'd one year ahead of you as Stage 4 MBC de novo. Xeloda has done a good job of keeping me NED for 3 1/2 years.
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Copying a past post of mine for Bev:
Regarding Hand-foot Syndrome --
Once in a while, for newbies, I like to recommend an article from July 2010 Oncology Nurse Advisor entitled "Prevention and management of hand-foot syndromes". Below I briefly summarize some main points about causes, prevention, and treatment; and mention some ways I applied the information when I was on Xeloda.
Possible causes and prevention:
—Small amounts of the chemo leak out of the capillaries into the hands and feet, damaging tissue. Therefore avoid heat, pressure, friction, and harsh chemicals on hands and feet. Some examples would be hot water (incl. with rubber gloves that trap heat), sun, saunas, tools that cause a lot of pressure. So be mindful when you cook, garden, build, etc. For example, if possible get help with opening tight jar lids, and use warm water only for showers and use cold water at other times.
—Local delivery of high drug concentrations occurs through the sweat glands, of which there are many on the palms of the hands and the soles of the feet. My idea about this is to wash the hands and feet a couple hours after the pills (peak blood level), and whenever they feel sweaty. I also change my socks a lot, and take off my shoes when I am sitting for any length of time.
Possible treatments:
—Dose reduction
—Pyroxidene aka Vitamin B6. I wouldn't take a supplement without my doc's advice, but I figure I might as well pay attention to foods that have a good amount of B6, such as turkey, chicken, salmon, eggs, cheese, lentils, beans, carrots, spinach, garlic, bananas, whole-grain flour, chia seeds, and pistachios.
— COX-2 inhibitors to reduce the inflammatory response. e.g. The NSAID Celebrex. Ask your doctor. I did a bit of research and found that oregano and ginger may have similar (though I expect smaller) effects, so I cook with them and drink ginger tea. (If you are on blood thinners run the ginger tea by your doctor.)
—Vasoconstrictive therapies such as localized cooling. So I rinse hands and feet with cold water, especially a couple hours after my pills or whenever they feel hot.
—Topical emollients, especially those containing lanolin. Lansinoh is a nice one; find it in the breastfeeding supplies section. It is too thick for regular use but superb to help broken skin heal. I also recommend O'Keeffe's Healthy Feet, which contains urea but not a huge amount, which could be bad for sensitive skin; Shikai Borage Therapy Foot Cream, and Everyone Lotion with coconut oil. These are all paraben- and fragrance-free.
I hope these notes will be helpful.
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