All about Xeloda
Comments
-
I think everyone has their magic 'pill'. Or at least a drug that will work for a while. Pat, I'm so sorry you haven't found it yet. I hope the CT turns out OK.
0 -
I would be thrilled to get 3 years on a treatment! Time goes so fast. Goldie I'm glad you don't have to switch.
0 -
last night my mouth, hands and feet got really sore. Even woke me up. Gargling with salt water helped but makes me more thirsty.
Emailed nurse. I just figured I'd have to endure like I did during the red devil. Whatever it takes, right? Nope. Take a 10 day break or longer until I heal then start back 7/7.
I've have some 20% urea cream. Anything else I can do? Am I guaranteed to peel?
0 -
Anyone on the following regimen: Xeloda 14 on 7 off with Keytruda infusion every three weeks, infusion administered concurrently with day one of the Xeloda cycle?
0 -
My feet and hands just started hurting yesterday which is weird because it is my week off. My big toe had a bliter on the bottom out of nowhere. I use 40 percent urea, then since that not very moisurizing I eucerin good cream that has urea, I think 10 percent. Idk if it would be worse without it or not.
0 -
Jeff, depending on the responses you get here, I'm also involved in a very active FB page for Xeloda users. We have almost 700 members, and I'm pretty sure some are on Keytruda, along with Xeloda. Let me know if you (or anyone else) would like the link. It's just another resource that might be helpful.
0 -
dlb, the link would be much appreciated.
0 -
Jeff, I just messaged you the link. (Click on "Private Messages" to upper left to retrieve it.) Deanna
0 -
Goldie, I see you have been on Xeloda for three years. I started in April and it brought all my liver enzymes and TMs down to normal. It’s been stable until this past week. I got blood work done and my Alk Phos is elevated a little and my TMS went up 20 points. They are 57. My doc has recommended a CT but do they adjust this medication when things start to happen. I’ve gained weight since I’ve been on it. I take 1500 twice a day one week off but I’m freaking out about this trend. Have any insight on this? I’m getting scared of the next option. Ibrance failed me in 6 months too. 😞
Glad you are running a good race with X. I was hoping for a good run too.
Hugs
Anita
0 -
Hi Anita,
I know how you feel. Taxol, then Ibrance/Anastrozole failed and it looks like Xeloda is also not working for me. I’m waiting for a CT scan but wonder what my MO will pull out of his bag of tricks next. I want a good run on something soon!
Pat
0 -
Oh, also meant to say how much I love your photos. I was in South Africa (and Mozambique) several times and absolutely loved the country. Breathtakingly beautiful. I would love to go back but need to get to stable treatment before I think about packing my bags.
0 -
Thank you Pat. I just got back from Namibia and went up to the north to the desert. It was amazing. I haven’t been to Mozambique it close. I have travel Botswana in the Okavango Delta , South Africa many times and Zimbabwe and Zambia. I got some great photos I’ll share some with you. I have been busy so I haven’t had much time to download. Thank you for letting me know I’m not alone. The bag of tricks might run out. This is such a dark cloud we live under! Here are few of the photos in the desert. The desert Elephants are smaller than what you see in other places. If I get stable I’m heading to Kruger to try to photograph leapards and other baby animals and birds. Hope you enjoy. Get stable and jump on the plane😂😂👍🏻
Hugs to you and thanks again. Anita
0 -
Anita, I love your photos. They always cheer me up.
Pat, I started Xeloda the same time you did. Did your tumor markers go up? My last lab was ok, but elevated ALK and MO said let's keep going. I was only on Ibrance 4 months before progression. When is your CT?
0 -
Thank you Lindalou. They cheer me up too. Hope they cheer others. Nature is one of the best medication we can have.
0 -
love love love the photo
0 -
Anita. Thank you for posting those amazing photos. I so want to go back to Kruger. At one point I spent an amazing three days at a private reserve, Ngala. It was a magic experience, particularly the sundowners! A couple that my friend and I were paired with celebrated their anniversary while we were there. Staff orchestrated a big surprise for our evening game drive with a small camp set up complete with tiki torches, staff in tuxedos roasting game and champagne. With the stars in the night sky so bright and the sound of the bush around us it was magical. As to the leopards, they can be a bit tricky to find but I was thrilled to finally see one of the big cats up a tree on my last day in Kruger. Stunning animals.
Lindalou, my MO does not really track TMs - likely as, to date, progression has been pretty obvious. I haven't achieved a decent run on any meds. The current issue for me is pain under my ribs and at the back of the ribs on the right side where I had the pleural effusion. I started experiencing pain in late August. An ultrasound did not show anything ominous but the October CT showed progression in the bones and in the pleural lining/peritoneum. The pain under my ribs is likely caused by the cancer pressing on the liver as it is in the capsule surrounding it. My MO indicated that we should see a clinical response after two to three rounds of Xeloda. Given that the pain has not eased (and is actually a bit worse plus I have some shortness of breath again) he wants a CT scan. It's being scheduled as urgent so I'm still waiting for a date/time - likely this week.
My gut is telling me that this one is not the magic bullet I need so time to move on again. Certainly hoping I find something effective soon.
Pat
0 -
Hi Anita. Your photos are gorgeous! I always dreamed to travel to Africa, but I was a little bit scared. Thank you for sharing. Next time take me with you
0 -
Thank you all for the kind comments. Let’s all hope we find the right treatment so we can keep enjoying life. The ups and downs are the worst. It makes it hard to be happy with the dark cloud glooming over head.
Hugs to everyone,
Anita
0 -
Photo, I wouldn't jump to another treatment just yet. My TM's went up about 20 too, but he's not wanting to jump to conclusion. I have adjusted my meds many times. Also because I don't have any symptoms, he doesn't think it necessary for scans just yet. Love the photos, beautiful. Dark cloud indeed.
Sadie, hoping you can use X for longer and I'm sorry for the increasing pain and SOB. I hope your "gut" is wrong.
0 -
Goldie - I was so hoping to follow in your path, Xeloda low dose for years.
The new bc specialist blew my hope out of the ocean. He said that with mixed results of the liver lesions growing but the lymph nodes cleared he doubted the Xeloda was ever working since the lymph node areas had been radiated. augh. I had wondered and now it just is sinking in and too harsh for comfort. If he is right then I have been off effective cancer treatment for 19 months or so. Except that period of radiation in broad neck basin and microscopic to the right lung bronchial. But I am now off Xeloda since the liver lesions were growing at will, so it doesn't matter. Next tx is Aromasin / Afinitor. I have to re-re-re-recheck my scans and see what I think. There had been oodles of other lymph nodes that were cancer-filled. Those were not all radiated. But was it from Ibrance or Xeloda hat tamed them? Just thinking out loud and lamenting. Especially if I was on Xeloda 8 months and it did nothing, it was a hard one for me, couldn't even eat more than a few bites, exhausted, wheelchair when out. And for nothing? I feel like the little of life there is left has been frittered away.
0 -
I'm so sorry bluebird. It sucks to think of all this crap for nothing.
Speaking of crap, how long does the diarrhea last? Any foods better or worse? I went off X on Monday. Had the big D ever since. I was hoping for a nice time on my "break" of a week or so.
It's Christmas for Petes sake. I've got two children. I've got things to do. Racing for the toilet is not on my to-do-list.
The Imodium helps but I'm scared of getting constipated. Not sure which is worse.
0 -
Zill, I am sure other's on this thread have different ways of coping with this but I usually get that side effect a few days during my week off. Funny how that happens. I use the BRAT diet; bananas, rice, applesauce, toast/tea. I would also call your MO's office and ask what they would recommend for this. My MO has also recommended to eat more fiber. I know that seems counter intuitive but her explanation was that it helps 'bulk' up.
I hope this clears up for you soon.
0 -
Bluebird, sorry about this news. I hope A/A is the ticket. I was afraid of afinitor so I took only aromasin and I had sbrt to 3 spinal lesions during that time. My markers went up the whole time except after the rad they went down twice, then right back up again. So I figured the aromasin did nothing even though I was on it for a year because onc seems to do things slowly. I told him I didn't think it worked and he yes it did because of those times the marker went down. I didn't say anything because why bother, but I'm sure he wasn't thinking about the radiation. Esp because he didn't think I should have it. I thought it was worth a try. Unfortunately a bunch more Mets showed up within months. Before rads those 3 were the only ones that were awake. I used to count my Mets lol, so much for that!
0 -
Zill,
My onc was very worried when I had a prolonged period of diarrhea It can create other problems I used immodium,immodium and immodium and drank less coffee It wasn't a cure all but helped a great deal I had the Big d on tykerb, not on xeloda - constipated go figure
Best of luck
Nel0 -
Well, I will be joining you wonderful ladies here. Started Madame X last night. I will be back peddling for a lot of pages to try and catch up. In the meantime I hope everyone is doing well on this regimen. I know I could use some relief/success......
0 -
Artist, I am starting the third cycle and have minimal SE so far. Hands and feet are a little tender but nothing major. I will see if they accumulate with this cycle. Since I started taking xeloda I have improvement in my health caused by cancer and infection- shortness of breath, temperature,pain in back and hips, tiredness and weakness. I am hoping to have good scans in January February as I after so many months of being bedridden , I can do with some relief and quality of life.
I hope Xeloda is easy for you with minor SE and major attack on the nasty c cells.
Love, Karine
0 -
Artist, welcome! You can do this! It appears that the level of side-effects depends on (a) the dosage and (b) luck.
I have no quarrels with this med. Except when I get blisters and am holed up in a hotel room whilst everyone else is out touring. But no, I'm not bitter, oh no. Now I'm more careful with my feet.
Lotion up. I've got gold bond ultimate, udder cream and O'Keefe's working feet. I rotate. Else, live your life but carry Immodium until you know what GI problems you will have.
0 -
Artist: Welcome to Xeloda. Its been a great drug for me so far (about 4-5 months and 1 great CT scan). I feel the side effects are better managed in advance and I also keep an eye out for sickness which can come any day - even on my days off. Zofran is my go to for that, but then I have to watch for constipation with the odd laxative. I do feel that is getting better - maybe my stomach is getting used to X. My feet and hands get very dry and have the characterizing red line and tingly feelings. Udder cream is great - I have a tub for evening 'pampers' and a tube of udder hand cream for daily use. If they get itchy - I take the odd Benadryl tablet. I keep an eye out for tiredness too. My hair does seem to becoming thing and annoyingly a bit stringy/fluffy (not sure how to describe but its not behaving when blow-dried)
I wish you and all fellow X'ers fantastic success and relief from those pesky side-effects.
Sarah
0 -
Has anyone had any luck using coconut oil on hfs? Also, if I tried to exfoliate , would that just make it worse?
My hair is dry and stringy, not my usual soft curls. I dont usually feel sick, but I do fatigue easily on X. Probably more so than anything else I’ve been on, besides the initial chemo cocktail. I like the outdoors, exercise, hiking, the beach, so the feet thing has really cut into the quality of my daily life.
My MO says most women quit X after about a year, mostly due to intolerable side effects, but sometimes because it stops working. I know there the outliers who have been on it for many years, but frankly I’m looking forward to the end of this one.
Stefanie
0 -
Blue, don't think of it as it did nothing for the 8 months you were on it. Wishing you a long run on the next treatment.
Zills, I have not had "D", I actually have rather "normal" BM's. I would try the BRAT diet too. Also, you could look into some HEMP oil and/or some CBD.
Karina, I too hope you can get some QOL back.
Welcome Artist, did you get 2 years on Ibrance? Hoping you get a long run on X.
Stefajoy, I use coconut oil and when I can I put some rubber gloves on and also plastic bags on my feet, right after applying the oil. With the feet issue, it def. cuts into outdoor activities. My onc also told me that it was basically good for a year.
0
