All about Xeloda
Comments
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Thanks Kattysmith!
Yes, the SE's aren't a picnic. But right now I am celebrating the fact that I went for a whole off-week without a horribly sore toe!!!!
I am thankful for the little stuff.....
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Morning All,
I just took my last first cycle dose of Xeloda and am beginning my week off. I see my doctor - well, the NP- on Friday. I just noticed this morning that my right heel was sore and examined it. I have developed a thick callous on it. What's the best way to deal with the callous? I don't have an emery boards or anything, but can get some today if need be. I've been moisturing with Udderly Smooth during the day and Vermont Bag Balm at night.
Thanks!
Katty
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@Denny123 : Thank you Denny for your suggestions. And I am amazed to hear that you are 18 years survivor, this gives me some hope. I also do not drink alcohol and was my decision as well. I agree with you diet part, I also try to follow healthy diet as much as vegeterian but sometimes i indulged myself in eating sweets here and there.
I am not sure about the RFA but the liver surgeon was also telling that the surgery would not be that painful. I hope to get through it like you did.
@Kattysmith : I wish you good luck on the X and wish you don't get any SE. I wish the same for me as well :-)
Thank you for all your support...I will keep posted on how the surgery and X goes.
Take care ladies
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Kattysmith-I just let mine go. The skin on the bottom of your feet will soon peel off and your will have fresh, new skin. I wouldn't worry about it, since to try to file it down might injure the tissues.
Naesha-please let us know about the surgery! I am a Reach to Recovery volunteer for the ACS and have helped 100's of ladies through their treatment for 17 years. It is important for me to know all of the new or established techniques.
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Thanks, Denny. I've seen that other people on this thread have suggested pumicing them, but I wasn't sure about that. Heck, I'm not sure about anything ! My feet were pretty rough to start out with as unfortunately I've never taken care of them, so there may have been some callusing already. It is a little sore but not too bad so far.
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naesha
My cancer came back while on the keto diet. Started the diet in sept 2018. Diagnosis April 2019. I had lost 40 pounds and stayed on it until I reached 50 this summer.
When I went to MD Anderson they told me that I need to add back healthy carbs because after liver resection they need to make sure the liver is functioning properly. Their recommendation is 80% plant based diet Not ready for that but have a friend doing it and her TM went down 50 points!
I added back fruits and veggies but still avoid processed sugars like breads and desserts. I continue to eat a lower carb diet. But I still enjoy my high fat foods to keep me feeling full like avocado and cheese. I did gain back 5 pounds when I went off keto but I am also not as active due to the HFS on X.
Hope this helps. Dee
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I agree with you AlabamaDee. I also like to follow the healthy diet program. Recently i spoke to one of the OSU PHD person who is doing the clinical trials on Keto Diet and AICR diet (American institute of cancer research). The Keto diet clinical trial is full but the AICR diet has still some openings so I am planing to start it. I am not expecting a big change on my cancer journey but an encouragement and motivation to myself in order to follow a healthy diet lifestyle. They do some scans and imaging to see the improvement every 3 months. At least my believe is that it will help me to know that whether I am going on the right direction or not.
@Denny123 : I will keep you posted on my liver surgery and the AICR diet clinical trial process.
Take care ladies.
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Hi Lynn,
I just began my first cycle of Xeloda on Monday, November 4th. I am 1000mg twice daily (two 500 mg tablets taken within 30 mins of my meals). I began my MBC journey in 2015 and since January 2018 I have been on different AI's and targeted drugs to out-smart my cancer progression. Each time I last about 10 to 12 months and my PET/CT scans will show progression. I, too, am ER positive/ HER negative ~ Bone mets: sternum, pelvis, spine, ribs, skull, shoulders, and clavicle area..I agree - it's everywhere!!!!!
This time my oncologist is going with just chemo therapy. I know my cancer is not life threatening at this time, but the bone pain and so many different side effects from drugs has been challenging. I am 71 years old and determine to stay as active as possible in my exercise class and independent living with driving and self-care skills; however, I have began to feel tingling in my hands today. I use a cane due to chemically induced neuropathy from chemo in 2015. Yes, I am concerned about what my oncologist called Hand-foot syndrome. I think what you described fits the syndrome.
Lynn, I welcome sharing this journey with you. I don't often blog, but I will check often since we are sharing a similar journey and I do want to encourage you. Life on earth should never be a solo journey, especially with MBC. Let keep hope alive with xeloda! MAWS
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Maws, I had to chuckle at the part of your post where you address Lynn. She started this thread back in 2011, and has not been here since 2012. You are new, so I understand. There are dates for when every post is posted, and in the box with the persons name/picture, it shows when they were last here.
Anyways, good luck to you. I have bone mets as well, hips, groin, ribs, spine, jaw and skull. Been on X for 4.5 years.
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Hi all....Starting X next Friday the 15th. I know some of you Goldie ((((hugs)))) and Katty
So I know about the hand and foot thing already...I am prying I don't get it...and that I don't get the mouth sores.. I got the mouth sores bad on Ibrance. I was successful on Ibrance/Letrozole/faslodex (yes all 3) but only for 3 months..then month 4 everything came back and grew bone mets and liver... Last Monday I had Cryoblation done to my 2 liver mets the 3rd one they couldn't do too close to colon wall. I am now going to start X.....I don't want to sound like a pessimist but I am not very hopeful...mainly because I was with Ibrance and it failed fast...and I feel like I hear so many people that fail X than do well...(Goldie you are one of the miracles ) Anyway we are starting on 1000mg morning and 1000 mg night time.I welcome any tips you all might have. First scan of CT and MRI will be in 2 months. She's (my MO) not messing around waiting 6 months to see if it fails...which I am glad about.
PS: I am also doing the Jane Mclelland protocol. So if anyone knows anything that specifically interferes with the X let me know
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NicoleRod- as an almost 18 year survivor of Stage 4 MBC de novo, and having done tons of research I wouldn't touch anything like Jane suggests. Most supplements will negate the efficacy of your chemo. Please ask your specialty pharmacist.
I have been on chemo for 17 1/2 years, have been on chemo the whole time and will be on it for life, and I am currently NED.
Our diets should be a healthy one and everything in moderation. Chemo is what helps us, not "miracle cures". But do what you want, as long as your specialty pharmacist agrees.
I have been on X for 21 months, also at 2,000 a day. and the best thing that works for me is Aquaphor on hands and feet at night with silicone socks and food service gloves. Good luck!
MAWS- I am 70 and I find it admirable that you can participate in exercise classes. I have a really bad back and moderate lymphedema so I have to modify all exercises. And then the HFS doesn't help matters. Good luck to you, also!
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Denny, you're such an inspiration to us all...we want to be just like YOU!
Welcome, Maws and Nicole, and all others, and good luck to us all! I agree with the lotion (Aquaphor for me) and food service gloves for hands, and the gel-lined socks for feet at night. Those have worked the best of all for me.
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Denny...I do not believe in miracle cures either..hence why I am looking at Janes protocol with chemo. I do not believe that Conventional treatments ALONE can cure nor do I believe Unconventional alone can. I believe Chemo kills cancer cells...no doubt about it..and I want it for exactly that reason...but its a fact that it does not kill cancer stem cells...hence why we get Metastasis. Jane is not the only one that is in remission using off label drugs and natural supplements (along side immunotherapy and/or chemo) to starve cancer. I also believe that what fuels your cancer may not be the same as what fuels mine. For example...I have and have had for over 20 years lyme disease and Epstien Barr Virus...do you? Probably not right? They now are finding out that a pre-cursor to breast cancer is EBV...along with other autoimmune diseases that compromise ones ability to fight off cancer cells etc. I believe those 2 diseases were definitely involved in my breast cancer and recurrence along with Inflammation which I know I had very badly (long story). I agree with you about a healthy diet but moderation...I certainly cheat and have cheat foods/days. I am investigating which supplements negate the efficacy of chemo thats why I mentioned here for a heads up incase anyone knew stuff I would add it to the list. My MO knows what I am taking.
I wonder how many people there are like you that have been on chemo for over 17 years? I don't think I have ever heard of anyone that long...but here you are...point is...you are rarity...but you probably already know that.
If I were living 17 years on chemo and felt great like you I would probably only do chemo as well...but I don't see that happening so I will try to be as healthy as I can while trying to starve my cancer. Wish you an even longer run with that. Joyner thank you for the PM and the info you are so sweet!!!
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Welcome Maws and Nicole!
Nicole, I drop in on the Fenben thread from time to time and have read about Jane's protocol. I agree that none of our cancers are identical which is why there will never be one cure, just (hopefully) more and more ways to understand how to outsmart and manage it.
I'm very new to this treatment, too. I have always had cold hands and have a very arthritic right hand, so I am loving sleeping in cotton gloves every night! It's great to FINALLY have warm hands!
Best vibes, wishes, and mojo to everyone here!
Katty
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Nicole-great! I am glad that you are working with your pharmacist to make sure that the supplements won't keep your chemo from working and I didn't mean to offend you.
I have been a Reach to Recovery (of the ACS) volunteer counselor for 17 years and have helped 100's of ladies through their advanced BC treatments.
I honestly don't know of any of the ladies who were able to survive on their combo of supplements and chemo, but would love to find out that it is possible.
Best of luck to you!
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Joyner...glad that you agree with the silicone socks! My biggest fear is slipping on the darned things at 3am when I am going for a pee break. LOL.
But I do have my fall alert necklace on in that event!
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Denny..I just got here why would you think you offended me, because I explained that I wasn't looking for a "miracle cure" as you stated? Im a little baffled. I was letting you know that there is a lot more to the Jane Mclelland protocol then just stating that "most supplements will negate the efficacy of chemo"...that really just is a completely false statement bc a lot and most of what Jane suggests isn't even supplements it's off label prescription drugs that are actually totally safe and will not hurt the efficacy of chemo in any way.
I think I am also confused by your statement:" I honestly don't know of any of the ladies who were able to survive on their combo of supplements and chemo, but would love to find out that it is possible."
Are you saying you only know ladies that survive MBC with only standard of care or that you have never met 1 person that has survived MBC that took off label prescription meds and supplements to block pathways alongside them taking chemo/immunotherapy? If the latter Jane is one
& Joe Tippens is another. Also if you go on FB there are tons of people that are surviving and NED. 0 -
Nicole...There is nothing that I can say to anyone who believes that Fenbendazole (dog ringworm med) is safe.
This is a discussion for the Alternative Medication forum.
I prefer not to argue with anyone about those kinds of (I hesitate to call them meds).
I'm out.
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Jane talks about Mebedazole..that is a human drug not Fenbedazole the dog dewormer. Joe Tippens that I mentioned took Vitamin E and Curcurmin supplements alongside Fenben I was referring to the supplements.
I personally was not arguing with you just pointing out to you that most of the things Jane talks about you called supplements they are not they are re-purposed drugs. I also wasn't trying to have a discussion about Fenben in here I simply mentioned in my original post that I would be doing that protocol alongside the X so if anyone had info about interactions I was open to jot them down I in no way was trying to make a discussion about that.
It's too bad you felt you were arguing...I definitely did not feel that way explaining things
For those in the thread that have so far offered information regarding X side effects thanks, I will keep open to any suggestions
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Nicole....I have been on this site for over 17 years. Several years ago, some ladies were on the Stage 4 thread pushing alternative treatments. Eventually the mods stepped in and created the Alternative Treatments thread and those ladies were instructed to post only there. But they weren't BC patients.
Since you are a BC patient, this is indeed the place to discuss Xeloda. But I think that you would find other patients interested in your alterative treatments in the alternative specific thread, especially since patients on other chemos might wish to participate in those experiments.
No harm done and I still wish you well!
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I am in those threads and happy there..Why are you saying you think I would find other people interested in my alternative treatments..I was not looking for anyone interested in that... So I will repeat again...I didn't not try to talk about alternative treatments here...I simply wanted to let the ladies that didn't know me from those threads know that I was doing that protocol so if they knew of interactions with Xeloda just to let me know. That was it.
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So I got my sheet today of possible side effects and the actual pills...I was glad to see that mouth sores were not on the 1st list of side effects but on the 2nd...I hope I can avoid them.
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Nicole, I never got mouth sores, and can't recall anyone else mentioning them. Fatigue in the beginning, but no more. My eyes are super sensitive to light, and they water a lot. Nose gets drippy sometimes and the HFS. None of which are not tolerable. Never any nausea either.
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Nicole
Hope X works for you and the symptoms are manageable. Keeping them under control is the key to staying on X. Seems it hits everyone a little different.
Not much issues with mouth sores, but I do have sensitive gums when brushing. I applied the magic mouth wash i got from the MO a couple times when it flares and use an extra soft tooth brush
There are a lot of different doses mentioned here. I started with the recommended dose for my mass, I have been in 4 cycles of X. ( 4600 mg per day2 weeks on 1 week off) Started lotion before I got the meds. My first cycle was fine- a little nausea and a little fatigue. 2nd cycle the HFS hit hard with painful hands and feet. Some nausea still ( mostly handled with small frequent meals) Reduced dosage to 4000 mg/day. 3rd cycle was a little less pain and less nausea. 4th cycle the feet started peeling. Still have friction pain in the feet when walking and in the hands when cooking/opening bottles. But the severity lessens over the cycle. My nails are so thin and I am constantly pushing back the fast growing cuticles, trimming to keep short and lubricating. I do have slightly watery eyes and nose. My M0 said I have not reached toxicity because the HFS is manageable even if it is painful so staying at the 4000 per day
scans on Wednesday to see if X is working! 🙏🏻0 -
Alabama-Good luck! My scan is on Wednesday too!
Glad that you mentioned the sore gums. I have been debating calling my dentist since I have had a sore spot on my gums for over a week. I usually get the sores on the other side.
But since the scan would also include my jaw, if I have a gum infection, it might show up. Hate waiting hours in the dentist's waiting room.
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Thanks for the info Goldie and Alabama. Alabama good luck with your scans!!! I think I may order that Udderly cream...
Does anyone know if the pills can be kept in a pill box touching other pills or no? Also it says to take with food but doesn't say if you can take other meds at the same time...like metformin which also needs to be taken with food? If no-one knows I will just ask the pharmacy but figured I would check here...
Also which Udder cream do you all use? Is it the balm? Can anyone post a link?
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I think the pills touching other pills is ok. On the packaging notes, I think it says something like wearing gloves when you pick them up, so not to touch them, but yet we are to put them in our mouth and swallow them!
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I have just started posting but I have been on the cancer journey for a very long time. First DX with Stage 2 in 1996-had chemo and radiation and tamoxifen. It reoccured as stage IV in 2013 METS to bones and lungs. Have been relatively stable since then with various treatments (haven't written them all down yet.) Have been on X for 2 years-2000 mg per day one week on and one week off. Tried higher dose but feet were too big a problem. I have numbness, redness and feel heat but not too bad as long as I use lotion often. I have no problem with my hands. Last month a PET scan showed a small lesion on my liver for the first time. Now I need to say that I started as ER+-changed to ER- two years ago which happens and limits the number of treatments available. So a biopsy on my liver was surprisingly ER+-another change. My doctor thinks I may have both positive and negative ERs so he has added HT to my X. I am taking 25 mg of Exemestane (Aromasin) with food in the evening. I see my doctor in a month to see if I need to do some kind of radiation treatment for the liver lesion or the HT is doing the job. I have had an off and on problem with fluid in the pleural area of my lung and have had several pleural infusions before the medication reduced the fluid. This results in my losing my breath when I climb stairs or an incline, or try to run. Otherwise my breath is normal. I will see a pulmonologist next month. It seems to be from scar tissue. I am also finding that I get very tired on X and it impacts my appetite. I am trying very hard to maintain my weight. Am I the only one who has no appetite on this medication?
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Hi Livinginthepresent... I will start X this coming week..but I did read in the side effects that not having an appetite can be a side effect. Question...what is HT?? Herceptin chemo?
Goldie I believe the reason they do not want your hands to touch it is because if you touch your eyes or something after it could be bad.
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Can someone please PLEASE link me if you know it to the MSK trial showing that X works just as well and better with less side effects for 7 days on 7 days off... All I can find is this...and I am not sure this is it...
https://www.ncbi.nlm.nih.gov/pubmed/21387266
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