All about Xeloda
Comments
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I'm on a pretty low dose because I'm on Afinitor too. I'm hoping my hands and feet hold up. My integrative practitioner mentioned she'd want me to take B6 if hfs shows up but have no idea if that is a valid remedy. I try to sleep in the socks and gloves but I'm never able to keep them on--night sweats are a beast.
I hope your shoulder is feeling better Lita
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Hi you guys, you've been such incredible support. But unfortunately, D will be off Xeloda. Yes, that's exactly what her tiny hands look like. The Pet/CT has gotten so worse, i so wanted her to have the best advantage of this great drug but it's not in the cards for her. A few weeks ago the scans were not saying much, and 6 wks later this thing is going crazy.
The ascites worry me the most, but she has this nodule in the lung that was not there b4, not visible. And all the bones are more avid.
So Onco called on Friday afternoon, I will put up here the choices given if it helps anyone here.
First she mentioned Taxol, then another treatment with be a trial with Enzulatamide or the one Onco prefers the IMMU 132. I thought Taxol she already had, we know it's a tough one, the 2nd choice would not be at her Center, and the 3rd she was involved with for TNBC but could be promising for advance stage IV., loss of hair included.
I kinda agreed to IMMU 132, it's a 3 hr infusion, 2 weeks, one week off. So it's pretty much gonna be a whole day affair for her, which she is not happy about. She would have to wait 2 weeks to get the last treatment washed out. Which worries me very much due to ascites, but there is no choice, Onco thinks her lung nodule and everything could get better with this.Of course they are going blindly, and what am I doing? I feel like I am taking her to the slaughter. She depends on my research, on my opinion. What can I say? It's just that so much has gotten worse, that I don't know if we have the flexibility to play around, but which is sure? Even if she goes on Taxol, do i know? Should i go with a more familiar tx like taxol? And I really hate these 2 weeks with no treatment.
If that's the path, then next week she has to spend a full day having pre screening, also, her HGB is low, for this trial it has to be at least 9 or 10, it has not been there in awhile, so short of blood transfusion, let's hope that by not being on any treatment maybe it will go up.
I did not tell her about the ascites or the nodule in the lungs, maybe with time..., PCP and Onco agree. She will be examined, if she complains then maybe we'll tell her, she doesn't like to know much, i hope she does complaint if she feels something. I'll put hubby in charged of spying how she is doing.
I shall be copying this and posting in my other threads, sorry for the doubles.
I will check with you ladies on the liver thread, I am now on the peritoneal also, my best wishes for those on Xeloda.
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Mom,
It pains me to see the stress and worry in your words. Of course, you are her mother and just like all moms, would trade places with their child if they could. I sure wish you and Dani could catch a break, any break...all I can do it continue praying for something great to come along. You are a wonderful mother and Dani is very lucky to have you. Know that we're in this with you.
Amy
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Amy so true. I've spoke to GOd so many times, why her? She was just starting life. I did my stuff. Of course we all have much to do. But, with little kids, and constantly something, I honestly don't know how she doesn't lose her mind. When she goes to the market, to PTA no ones knows what's going on, she behaves in a normal fashion. Thanks sweetie, I know you guys are there and it means a lot.
I am thinking of getting another opinion. It's hard first because it means a trip for her. And she hates to be showcased. And also, believe it or not there aren't so many great choices. I have one, but I am trying to leave him for when we don't have choices. I am thinking very hard if we should go to him or stick to this new protocol. It has much promise, the problem is that nothing sticks to D.
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dear mom,
I just saw your posts. My mom is currently witnessing her second cancer experience of daughter, and she hardly can pull herself together. It is worse to have a loved one struggling with this crap.
Having said that, after almost 5 years on X, my TMs have skyrockected again.. I have appointment with MO tomorrow. Probably will switch to Navelbine, pill form (yes we have it in Turkiye).
Well, as a daughter I keep telling mom I appreciate her effort above everything else, as far as my condition is concerned, yet add each time that we are doomed to die at some point and I prefer QOL above all. She keeps saying my son is still young (6 at dx now 12) but I am cool about it cos he grew with it and is ready for my trip to heaven whenever that is. My main concern was aleays to teach him death is for all, from all ages & not to be afraid of. I strongly suggest you do this. Stage 4, MBC .. not curable still.. I have witnessed many sisters strıggling beyond death with some treatments their MOs warned would not help at the start. We all want to have hope to live long. Denialand is good, I agree with your D. I just had one Pet, whixh was at dx. Knowing the number and diameter of each tumor in my body does not interest me. I was very clear about this& my rockstar MO acted along so far. I occasionally MRIs. Regular TMs mostly show the picture anyway.
WE all should pray the guys at the FDA come to their senses soon. It's been years the cure is ready, yet the drug industry insists on more profit. I am serious. The Russians are in the game now, so just hope to live long enough from which I get the cure, I really don't care. Noone can convince me, those who spot new galaxies, new earths cannot deal with one malfunctioning cell in the body.
Anyway, rant over.. we are already equipped with good treatment options, but ascistes doesn't sound good. I do not know it's location, but if it is pleural effusion, I suggest you add a good pulmonologist to your med team.
I may have sounded a bit crazy with my views, still I have my country's one of top notch MOs, cardiologist, psychiatrist ( for Dealing with SEs like sleep deprival, anxiety etc) and pulmonologist on my med team. I do whatever medicine tells me too.. and live each day as a gift
Hugs and best wishes for the entire family
Ebr
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hello all,
Having been on X for almost 5 years,
I kept my hair, though started shredding in the last couple of months due to long-term builing up of SEs.
I didn't have HFS, bu had face syndrome for almost a year, during which nothing but nivea or sebamed q10 eye creams.
No milk consumption, period
No dairy protein with meat protein, period
I have a diet thread somewhere here on the community board, for which I paid a huge fee to obtain from an ongology dietician. Suggest you look it up for other details.
X when consumed with food has less SE on the stomach. And taking it early like 7:00 am and pm is best as you get to have snacks afterwards..
X has most SEs on thw week off, that's why it's the wek off
so daily afternoon naps, delegating as many house chores as possible and planning one big activity per day is essential not during the cycles, but ALWAYS!Get to bed early at night, you need to, you have to. No excuses.
I witnessed death of a very dear friend from boards, whose family didn't take her condition seriosly and expected normal housewife performance from her. She also had a business to run herself. Afyer struggling for a couple of months, she lost her strength to hold on to life, insisted she wanted no further experence of becoming bald again and died shortly after quitting x, her just second line treatment. I am writing this down cos meds help %50 of whatever to deal with. The remaining %50 is will to live, enjoy your remaing days and kick out anything and anybody toxic out of your life.
Be it Xeloda, taxotere, taxol, navelbine etc, it is your state of mind and surrounding conditions that matter most.
Hope all of us do well.
Hugs
Ebru
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MomATT, I've been thinking about you and Dani all day. You remind me so much of my mother, who helps me everyday with my kids, my house, my dog, my spirit. I worry about what happens to her own spirit when she goes home, because she is my rock when she is with me and I am so grateful for her, just as I'm sure Dani is so grateful for you. I'm so sorry you both have to go through this. Thank goodness she has you by her side. I hope her next treatment plan is the one that does stick.
I was recently reminded to not spend so much time trying heal, and to instead spend my time living my life and that sounds like what she is doing as much as she can.
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I'm gonna try and go to Hawaii one last time in the fall with my girlfriend who I've known since grade school. Yep, trying to live life. We can't dwell on this hideous disease every damn minute of the day.
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My wife just started on Xeloda two days ago. Not much in the way of SE's as yet. She's triple negative with multiple small mets to the spine (was ER+ but it changed to TN). She's had AC in the way of chemo and no taxol as she is highly allergic to it.
I know Xeloda has a track record of working, however, just to calm my nerves, what other chemo options are there yet for her to try? Her BC case is very complex and her oncologist said she probably wouldn't be considered for any trial.
My wife's condition below.
MikeW.
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Finished cycle #1 of 14 days on...felt pretty good, will scan towards the end of 3rd cycles, how soon did others see results.
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Mike- there are several other options as it looks like your wife is hormone receptor positive. I am not so can't tell you about those Meds but several people can.
Maybe check out the threads on the boards about mets to the same places your wife has them ( liver, bone, lung) there is lots of information there. Also search for immunotherapy.
Taxol or a taxane is used for aggressive cancers
Sorry I can't be more specific.
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Mike I really can't tell you what to go for next, but there are so many chemos and so many combinations, and re: trials, again there are so many. If and when the Onco will tell us there is nothing more I know for you, we are outta there so fast, and just try other opinions at least to be sure. If she is feeling alright there is no way I am just closing the doors.
My mom was 95, she could not be considered an old lady, in any way, she had meds of course but totally functional, just an example how we cannot generalize. Some ppl at 60 are totally falling apart, so my compass is how Dani is managing.
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Keetmom,
I started Xeloda mid-December, 2016 and had a scan 1 week ago, the first one since starting X. Liver spots gone and are all the bone mets of which there were dozens. My Oncologist is almost in disbelief. So I consider myself a super-responder and hope X continues to work for many years. AND of course, I wish it will be as successful with all my BCO sisters.
Good luck - btw, started with 4,000 mg/daily and was reduced to 3,000 mg after the first 14 days on and 7 off - I had a horrendous case of hand/foot syndrome which also included my mouth, lips and face. Blotchy itchy outbreaks all over my face, lips and inside my mouth. Side-effects are now a mild case of HF with no outbreaks elsewhere.
Again, good luck and hope for the very best.
Amy
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Amy...thrilled for You! Yes, X has helped a lot of people. Hope X works for you for a long time.
I've been on X for 10 months now. HFS varies from cycle to cycle. Pretty bad this week. It should improve during my off week.
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Lita, I so recognize those hands . . . I have similar issues on my hands and feet.
I purchased a few new products and they seem to be improving my HFS - Differin (which recently became available over the counter - up until now, it was prescription only) and a 40% urea cream with salicylic acid (ordered from Amazon). I had heard about Differin and salicylic acid from others on this thread. On their face, they both seem counterintuitive to me because Differin is a retinol-like cream and, like salicylic acid, is used to treat acne and aging and often makes skin temporarily red, slightly raw and more sensitive. Apparently, Differin makes the skin "locally resistant" to Xeloda based on some chemical reaction/antidote factor and salicylic acid is an anti-inflammatory and sheds off the dead skin.
These products, teamed with lowering my dosing schedule from 14 on/7 off to 7 on/7 off, seem to be steadily improving things. My iPhone actually recognizes my fingerprints again! It started a few weeks ago where it would recognize 1 of 5 of my fingerprints and can now recognize them all! My next goal is to be able to resume wearing sandals. (I had to stop because the sides of my feet look so unsightly - flaming red with a distinct line around entire foot where it goes from normal, pale skin to red - and dealing with extreme flaky, peeling "desquamation", where chunks/layers of skin are coming off to reveal layers that are much deeper than should be exposed). I live in a tropical climate and am used to wearing sandals/open shoes year round.
This sounds very morbid and I apologize for offending anyone by saying it but I often look at my hands and feet and feel as if they look like they belong to a dead body that has been submerged in water for a long period of time . . . . or a case of severe fungus that has gone untreated for years and years. People at work have noticed and commented on my hands, telling me I need a good lotion, although I try to keep my palms out of view. (My colleagues do not know about my dx and, even if they did, explaining that I am on chemo although I am not bald is not a convo I have the patience for right now.)
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My 83 year old mother has stage 4 ER positive, PR (+), Her 2 2+ breast cancer. Ever since 2008 when she had breast cancer surgery, she has been taking various hormonal medications to control the growth of her cancer - but now the latest medication she is taking is not limiting the cancer growth that has metastasized to the liver and kidneys. Her doctor is recommending that Ibrance (palbociclib) is best option for her treatment as soon as possible, but it is not available in Japan until summer 2017 the earliest. In the meantime, though the doctor is recommending Xedola for a few months. She has taken Armidex, Aromasin (Exemestrane), Toremifene (Fereston), Flasodex... Any advice for a her using Xedola to a newbie to this topic?
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Welcome, Joey
Xeloda seems to be quite effective for many. I have completed my 6th cycle and am stable. I would suggest reading back through the previous entries which will give you a good idea of the results that some have experienced. I am so sorry that your Mother and you are on this journey.
Diane
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And Mr. Diarrhea is back. I had 10 diarrhea free days, and now he is back with a vengeance.
Need Imodium STAT.
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So sorry to hear this Lita. I hope you've got a big supply at home, otherwise running to the store might be a bit tricky. I had an attack of D while at a Walgreens store and pled with the store manager to let me use their restrooms...and mentioned it was in their best interest to do so and quickly.
Oh the crap we go through...literally!
Amy
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So, finished my 14 days of x Thursday. (Had a 7/7 round first)
Right on track, my fingertips are hurting. One thumb knuckle and several fingertips.
How short do you keep your nails to help prevent splitting of the skin? Left thumb is split a bit already.
I'll have a slightly more than 2 week break because I now move to my first ever brain rad.
The fingers hurt, but I have to say I'm sorta glad. I had almost no se with Faslodex and almost no benefit. Do we have to see the se to feel confident stuff is working?
Onward!
Lita, hope the Imodium is working. And, your shoulder is better.
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Kaption, I was wondering the same thing about SEs. I never felt much on Ibrance and it did. O thing for me,and still don't on Faslodex. But crushing fatigue on Xeloda yesterday. It's worth it if it works! Today's the last day of my second 7/7 cycle. Good luck with the rads! Hope it is not too taxing.
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kaption, I keep my nails a little less than a quarter of an inch to protect the finger tips. Any longer than that and it gets hard to type.
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Hello, ladies. I've been lurking here a bit for the past couple of weeks, anticipating starting Xeloda after some very tiny but strongly suspected for mets spots appeared in my liver on my most recent scan. I was given a choice of three tx options, including a new Stage ll trial/study, but chose Xeloda and popped my first dose today.
Because my counts (especially granulocytes) are still quite low from 19 months on Ibrance (with Faslodex), and because I'm small, my local onc only wanted me to start at a 500 dose 1x/day -- moving up in 500 mg. increments per week -- to be sure I can tolerate it.
While the ideal would be that none of us was ever here, it's comforting to see so many friends from Bone Mets and other BCO threads.
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Deanna, as I've said, I'm sorry you had to move to this treatment. But, I hope X treats you well and gives you a very long run. There seem to be several good success stories here. It's interesting that your MO is easing you in. Sounds like a good idea with your situation.
I'm also selfishly glad your here to share your knowledge!
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Rookie Xeloda mistake. Bought some pistachios a couple of days ago. Fingertips hurt too much to open them. Guess DH will have to help!
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Deanna, my blood has never been effected by Xeloda. In fact it's improved greatly after stopping Ibrance. Ibrance did absolutely nothing for me except to land me in the hospital, twice due to infections. My counts were pathetic as was my appetite.
Of course your doctor knows best but I don't think you need to worry about low blood counts on X.
Good luck to you with this drug - watch out for hand/foot syndrome and keep hand creams and lotions nearby. Stay out of hot water for a while so as not to aggravate your hands and feet and take X within 30 minutes of eating. In otherwords, don't do what I did and take it 30 minutes after I ate...take it before the 30 minutes is up.
Will be hoping and praying for you.
Amy
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Thanks, Amy. Just to clarify, there's a bit of a difference between what my UCLA onc (the bc expert) and my local onc (lots of experience, but totally different approach) recommended. I figured it wouldn't hurt to do as my local onc suggested for a week, at which point I will be where my UCLA onc actually recommended starting -- 500mg. 2x/day. Just thought I'd explain that I'm doing was not suggested by UCLA (which I frequently tout as being so leading edge and the authority on everything), but my local onc. And thanks for the tips offered and questions answered both here and in PMs.
And Kaption, thank you for the heads up about pistachios! I never would have thought about that. Sorry you had to find out the hard way!
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So sorry, Gcirciari, I just saw your post. I have only tried aloe Vera gel. Where do you get the cream
Toni
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Cotton gloves are essential. It hurts just to hold the steering wheel. As for opening things, vinyl or nitrile gloves will help you get a grip on things.
People find help with Udder Cream, Working Hands Cream, Gold Bond Hand Cream in the tube, Eucerin cream and others, all available at your local store.
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Deanna, my blood counts have been slightly low (wbc and rbc) but NOTHING like Ibrance, just slightly under all the time. You should be okay once your body has a chance to cycle out the Ibrance. I wonder if they can do one neulasta or neopogin shot to get you recovered from Ibrance?
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