Just picked up my new meds - hoping 3rd try is a charm! Trying to remain positive and hopeful that my body responds to this one. I’ve been lucky on both Ibrance and Afinitor - side effects were manageable. But the darn pharmacist freaked me out a bit with the hand and foot issues - no flip flops? I live in California and we live in flip flops!! No steam, sauna or hot showers? I know they plan for the worst - but, anyone have input? I have liver Mets (tiny guys all under cm), plural effusion around lung and a tiny guy in my chest lymph. I’m a healthy, active and over obsesser about learning all the natural integrated things I should be doing! Which I believe is supporting my tolerance. Love to hear anything positive about Xeloda! Healing fibes to all 🙏.
Next ... Xeloda success stories? - SHARE Metastatic ...
Next ... Xeloda success stories?
Thought I would let you know I went to a support group and 2 people there were 10 years out currently and for a long time on xeloda. Best wishes 🎀♥️
Hi there, I am on Xeloda and have been for about 6-7 months and what the heck, I live in CA too and live in my flip flops when i'm not working. When i first heard about the hand and foot thing I sort of freaked out. When i first started I took 3 pills in the AM and 3 in the PM. I did start having some issues with my feet mostly. My doctor lowered the PM dosage to 2 pills and it helped. I hate sleeping in socks but I put aquaphor on my feet at night and then put on some footies. I still work out 3 times a week and it hasn't stopped me. For awhile if I put heels on my feet would be hurting by the end of the day but its better. Not much peeling. My hands aren't great but they honestly aren't horrible. It sort of feels like, at least for me, that the skin on the inside of my hands has shrunk and I need to stretch it out. They are kind of slick feeling. But again, it doesn't stop me from doing anything. And i am sorry but i am not taking a cool shower so while I don't try to use the hottest water I still want it plenty warm. Hope it works for you. I have been stable. Let me know if you have any other questions.
Kim
Just left it after 3 years it was my first drug with my MBC diagnosis- worked well- kicked my numbers way down and prevented any spread to liver or lungs- I have it only in my bones- I did have a few dose adjustments along the way- I did one week on and one off-1500 twice a day! I did have the hand and foot shit- good luck!!!
Hi I just finished my 3rd cycle of Xeloda. I didn’t take the last three doses because I was in Hawaii and could barely walk. The changes to my hands make me sad—extra sensitive to heat and pressure—painful to wash dishes, yet I cannot identify ordinary sensations with my fingertips. The good news, a clean scan! My mets are just on my scalp and that is getting smaller. I am going to request dose reduction—it’s too much.
I’m with you sister! I’m just about to finish 2nd cycle and I’ve got terrible foot pain! It’s super hard to walk... I notice if I push myself it’s way worse in afternoon and evenings. I’m trying everything but nothing has helped too much. More temporary! Straight aloe is good for immediate relief and I’m not cracking or anything but hands are starting to feel it and I have a lovely face rash. My friend is getting me some CBD w a little TCH balm - so hopeful that will work. She uses for back pain and says it’s a miracle. My dr said I was tolerating pretty good (of course not walking is tolerating??). it and should continue with dose but I’m going to see how the next cycle goes and after scan - look to reduce. I’m doing 1500am/2000pm. I have liver and plural Effusion of the lung which I’m trying to dry up! So breathing is worth the foot pain. Congrats on clean scan! That must feel great!! I’m hopeful I’ll see the same in about 5 weeks! Honestly outside of all the hand foot rash issues - I feel great! Lots of energy and no other side effects! Keep the faith! 🙏. What does are u on??? I’ve heard dose reduction is a game changer w this one....
Hi from Oregon! How you are doing on Xeloda? I just finished my second round (1300mg twice a day, 7 days on, 7 days off), so far no foot/hand issues, just a bit more fatigue. I wanted to share advice from my naturopathic oncologist who suggested taking 300mg of Vitamin B6 daily to minimize/prevent the hand/foot syndrome. Curcumin also helps. I also use a cream called Udderly Smooth, but any cream that contains urea is supposed to help. I slather it on in the morning and evening. I hope your scan results showed improvement. My liver mets grew on Ibrance, hoping Xeloda knocks them back again. Take care!
Yep I heard about B6 from my naturopathic as well! I’m afraid I was just about to start my 7/7 schedule when my plural Effusion went crazy - and fluid around heart (scary). So they are now talking moving off Xeloda! I’m so sad... I was tolerating so well and expected a long run w 7/7. We’ll see where I go - but keep the faith so many people have so much success w Xeloda. I’ve heard several 10 year stories!! Maybe I’ll go back after a blast of some stronger stuff for the fluid. My liver Mets are so tiny and have remained stable. Just fluid issues to solve!! Anyone have fluid issues are welcome to chime in! Always keeping the faith and positive vibes to you! 🙏. I wish you all the best on Xeloda!!
Oh, I'm sorry to hear about the pleural effusion...that's definitely a priority! After that's under control I hope you can go back to Xeloda too - it doesn't seem to cause effusion, or at least that's not one of the main side effects. Great that your liver mets are tiny and stable. Keep reading Radical Remission and eating well too...every positive thing we do helps toward healing! I'll let you know how my labs come out later this month.
No! The plural has nothing to do with Xeloda! It’s cancer in the fluid and Xeloda is not drying it up! Big bummer :(.
Do you still have the Pleurx in? I was reading about pleural effusion in "The Insider's Guide to Breast Cancer"; they recommend having the fluid cells tested periodically, as it may have a different ER, PR and HER2 profile than other metastasis. I really hope the new med works on the fluid!
I was in ICU last week with fluid around my heart and in my left lung. 2 drainage tubes inserted & 10 days later they were removed. I pray to God I am not left with horrific scars. Though I was told the cancer appeared to have metastasized to my lungs, the lesions were microscopic. I never had any lung issues prior to taking Xeloda! I used to jog and my lungs were healthy.
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