All about Xeloda
Comments
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I'll pray with you Dianarose...
I know how hard it is for this to keep coming back. It feels soooooo nightmarish. Can you speak to your Onc about other less intense options? My femur has been breaking and finally broken for six months. Lying in bed today feeling so sorry for myself. It's so hard. So instead of just feeling bad for me I think I'll diffuser it a little and pray for you too. Good luck my dear. Keep us posted. Care and hugs Valerie
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Finished 4th day of Xeloda 4 and 4 ea dose. Doing very well so far. USed to be an hour or less after taking dose I felt like I was being drained INTO the rabbit hole, weird, tired, wobbly. Then I read about taking a lot of methylfolate or folic acid with the Xeloda can create increased side effects and I was on a very high dose of all natural highly absorbable methylfolate (along w B12) to keep my lab range on the highest point of normal due to a MTHFR gene characteristic. So I am off that for the cycle to see how I feel. Will resume supplements when cycle is complete.
That said, I feel very pleased that there is an improvement so far. Will gauge this as the days go on. I am aiming for 10 days. Oncologist wants 14 but I would get so sick I could not make it beyond 10 days. This is quite hopeful for me.
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Valerie- so sorry that you are in so much pain. They really need to find something that is smarter then our dam cancer. I can see it out smarting after we are on a treatment for a long time but not from the get go. Today I'm sad and feeling defeated. The thought of more A/C makes me want to crawl in a hole and never come out. I will pray today for you as well.
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hello all X-LADIES,
I have LIVER FEMUR AND LUNG METS, discovered bc of a gardening accident in May 2017, I had a left ALND with lots of rads in June 2016, and supposedly a very basic run of MILL lumpectomy and clear sentinel nodes in April 2014...i am 66 and normally fit and active. After 2 years of Aromison and scans and claer Mamos and ultrasounds the BC showed up in liver..femur and lungs .never had a clue!! 3 cycles of ibrance-faslodex and my TMs tripled! So now I am on my 2nd cycle of XELODA, 1650 mgs twice a day...take is at 7Am and 7Pm. The morning dose is the hardest, I eat oatmeal or a banana or pumpernickel toast and a ZoFran...i need to wait 1 he before I try to rocket into my day....i used to be the Energized bunny, work with special ed toddlers had to stop bc of germs so my mornings are open I work as a tutor from 3 to 8 Mon.-Thursday.
Has anyone else experienced the rumble tumble sort of growling stomach after a dose..i tried to get up and go after taking a ZOFRAN, with the X-pills...not a good idea...had dry heaves for 15 minutes..
Now I wait an hour for the rumbles to calm, down hit the loo, and am finally good to go.
at night, I take 1650 with a jello pudding cup and it's off to sleep....with CVS SLEEP AID, otherwise I am counting sheep or punching the pillows....get too hot. Then cold..but the sleep aid helps.
Its the fatigue; the disinterest in laundry, hate the supermarket, may try to order stuff on line kind of nervous about quality, but just don't want to hit the stores..i just have the BLAHS,
Friends try to offer suggestions, like just get out and walk your dogs ....nope, i have fenced in yard..
Has anyone experienced shortness of breath? Or just this feeling of not wanting to do anything...yet not crying, not feeling anything but just wanting to be left alone...my adult kids are struggling to get the fact that my get up and go...left the building. I tell them it's the chemo. I will level out I hope?
My feet and hands feel puffy and I haved a tin can taste in my mouth and taste buds are dull...
And I no longer like the taste of coffee...
Any fellow X-women please help.
Thanks
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I'm sad to say that after almost 5 years my run on Xeloda has ended.
Still processing my conversation with oncologist today. Will write more later.
Thanks fir being my community and support system.
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Oh, leftfoot, we all wanted to hear that you were working on year 6 with Xeldoa. I'm sorry. I know it must be hard to process this after staying stable for so long. I think that if you got such a long time on one drug, it bodes well for the next one working a long time, too, because it is not a fast-mutating cancer.
Valerie, Dianarose, Bluebird. It's so terrible that you are suffering. I'm helpless to do anything but send my support and wishes that your caregivers will be able to help you feel better.
Gardener, I think I understand what you are saying. For me, the drug-induced tiredness can cause that inertia or lack of interest in doing stuff. I had it worse on Ibrance than now. I think it helps to decide to allow yourself, guilt-free, to take a day to lie around. I tend to do that if I had a particularly busy day the day before. Then I am ready to go again the following day. Pace yourself, adapt, lower your standards. The kids need to understand that even though you "look good" you are on some serious chemo. As for the tummy issues, have you tried having full meals rather than just a banana or a pudding etc. before you take your Xeloda?
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Gardner- I take a nausea pill 30 minutes before I eat then wait about 15-20 then take the Xeloda. No issues with tummy after. I too don't feel like doing anything. I was always into sewing, crafts, baking etc.. Now I do nothing. It's like I just exist. It's horrible!
Leftfoot- your post broke my heart. So sorry you are coming off Xeloda. It just sucks!!
Did anyone have their tumor marker or LDH go up when you first started Xeloda? My LDH has gone from normal to over 700 in just over two weeks and tumor marker is up too. I asked MO if it could be from dying cancer and she said, we just don't know. My other labs were ok which is unusual for me. I tried to have a good day with DH today but my mind was really messing with me. He'd talk about doing something next year and my head would say you probably won't be here. I'm 56 and never thought I would be where I am. My mother is 80 and healthy.
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Kirstensmum, to answer your question, I do use the cream/lotion on my feet even during my week off. Personally, I don't like the Udderly cream because it has parabens, which don't seem a good idea for ER+ cancer. I also prefer unscented to avoid possible irritation and bad chemicals. So I found O'Keeffe's Working Hands Cream (for my feet) and Shikai Borage Therapy Foot Cream. They are unscented and paraben-free. WH has urea, and that is supposed to be good for calloused skin. Calloused areas can get more irritated by Xeloda than other areas. Has anyone else found paraben and fragrance-free lotions they like?
http://www.breastcancer.org/risk/factors/cosmetics
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I hesitate to speak because I have not suffered what some of you have suffered (yet). But something that helps me when I don't want to do anything and I am afraid about the future, is to direct my attention to something immediate that is good. The softness of my cat's fur, the wonder of a butterfly's flight, the scent of a rose, the taste of my tea. It's ok to just be.
It's just so wrong that any of us are in this position, having stage iv bc. Sometimes a part of me just can't believe it.
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ShetlandPony, I've had great experience with one of the shea butter creams from Nubian Heritage: their Organic Shea Butter with Hemp Seed Oil, Neem Oil and Vetiver. It's not fully unscented (to my nose, anyway), but it's a mild scent and very much worth it for what it does for my feet.
I've also had good luck with a medical cannabis salve available thru one of the dispensaries in my state. Not sure if you have access to that sort of thing where you live, though. The Nubian Heritage salve is available over the counter and I've seen it at Target, in addition to the crunchier co-ops and Whole Foods.
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Shetland, I am using Eucerin advanced repair light feel foot cream. It has urea and is fragrance free and I see no parabens on the ingreients. I doubt ALL of the ingredients are good, but there is a lot of good in it. I am only on day 7 and no problems yet. Using it for prevention. Also using a 40 percent urea I found on amazon but it does have parabens.
I am also feeling no interest in doing anything at all! I have been tired and lazy with all of my treatments, but this is different and more like a mild depression. Dishes pile up, I forced myself to get groceries yesterday because I was out of everything. I was wondering if it was the xeloda or just that I am irked about the freaking $200 copay. For 14 days worth. Ugh pisses me off.
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Gardner, you were not on Ibrance/faslodex very long. My TM went up the whole time I was on it (16 months) but during that time I had two scans and both showed continued significant improvement. I think it's well known that it can take 6 months or even longer for that combo to start working. Also, a lot of pl have rising markers on it. Mine had always been very reliable before that. Anyway. Maybe you had a scan to verify, but if not, I wouldn't consider it to have failed. Maybe keep it mind and go back to it later depending how xeloda works out.
Anyway I know what you mean, I am addicted to knitting and now I don't want to do it at all. Sunday I watched Criminal Intent on ION TV all the livelong day. Didn't even get my laundry done. So disgusted with myself!
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Hi all, will have to rad the last few pages in a bit. Time on computer is up and dinner ready.
Will be posting this in 3 forums, researching on my own too and looking into my last year of scans and labs for clues. Hoping for the information needed to unravel a puzzle.
Good news and bad news. And a huge question.
PET CT of brain / body was clear, all evidence of active disease was clear.
I had cycles of radiation in 1) supraclavical broad basin and at a lymph node mass that was severely compressing a bronchial tube. And I did Ibrance/Femara for 5 mo (which stopped working at 2 1/2 mo) then Xeloda 2000 mg 2x day at ave 10 days on 7 off. Five full cycles.
OK - Bad news.
The one lesion in lover is doubled w 2x SUV uptake too. Plus another is next two it. These are about 2-in x 1 1/2- in on 1st and 1 1/2-in x 1-in on 2nd.
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1. How is it I was on the GO-TO chemo for liver mets and this has happened?
2. Do I need a liver biopsy to be certain this is MBC mets to liver and not liver cancer or some other?
3. I have been given all options that includes going to a liver center at U of MI or IU for tx discussion. Or radiation at the center I am at which has one of the three state of the arc machines in the region. So good hands there I am assuming.
RADIATION
To say I did well on radiation is not true. I got pneumonitis and am still suffering from that! I have lupus and had a lupus flare like none before and feel like it is still ongoing even since April/May rads. I am an inflamed mess, not able to take steroids to help and allergic to cough syrup as we know it. At least the joint pain and fire stopped at three weeks out, but the photosensitivity / radiation is frankly what could kill me quicker than the cancer.
4. Surgery is out, lungs need saved for when there are no other choices.
5. I am considering an IV chemo. Going after the lesions and any floating cells tht can be got, those that are just never going to show on a scan until they begin to multiply. Though knowing it is not the full answer.
6. Also will be back on Arimidex and hopefully Faslodex.
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So what insight on why this happened. And what could be done now as far as treatment, local or chemo? THANK YOU!!!
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BTW - I love this standin oncologist at the center. We are a team. And he understands you all are a part of the team. I feel positive and better today.
FYI - This is my after time in full shade one morning, May 2017, was a mild Spring day so played in my garden under a hat and a lot of clothes. Malar rash w/ hot boils. I learned not to that again.
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Bluebird can you get rads to the 2 spots on the liver? Maybe SBRT which is only 5 days and very precise and kills the cancer, not just puts it to sleep for awhile. One of those machines that moves with your breathing. I forget the name of the machine but they have on in Jacksonville at UF Shands and I think rochester has one too. The Dr I went to is Paul Okunieff and UF Shands Gainesville but he works together with the Jacksonville guys and you go to whichever has the right machine for you situation. If everything else is NED you would probably qualify. He's trying to cure people with minimal lesions.
I am at a loss why this has happened but it's frustrating. I am on day 8 of X and I skipped it this morning due to constipation, blaoting, depression, pinkeye, and red spots on face. Onc said basically suck it up lol.
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HLB, bloating? Do you attribute it to Xeloda? I want to think that X, and not something more sinister, is causing mine. It is not painful or hard, no constipation. ... Yeah, I never used to watch TV the way I do now. I think I just need a reliable escape that doesn't take much energy. I have watched some funny sitcoms as well as some really interesting PBS and BBC stuff. Hey, laughter is good and I'm learning new things, even if nobody has enough clean socks at the moment.
(Bluebird, I moved my reply to you to the liver mets thread.)
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Shetland I don't know if the bloating is from X, but all of these things are happening in the last few days. Today is day 8 of X. I am so bloated I feel miserable, and I took laxatives, which took care of that problem, but didn't even feel a lot better because the bloating is still there. I feel so hungry but then when I eat it's even worse! And my gut is constantly rumbling and gurgling.
I'm not sure what you mean by more sinister, but I briefly thought about ascites. But al my Mets are in bones. Maybe it decided to go to the liver and grow really quick, who knows. I skipped this mornings pills but I will take tonight's soon. But I dread it. I suppose I could just take laxatives every night. I do take magnesium becaue calcium also does it to me. But with the X added I guess it's not enough. I have been walking every day.
I've also been using paper plates, bowls and cups because if I get HfS I might have trouble doing dishes. It's just me and cats here and they are so spoiled they won't help with anything!!
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Thanks for your input, HLB. Yeah, I don't want to hear that my bloating is due to ascites, gastro mets, or ovarian cancer/mets. I am seeing both gyno and gastro oncology people this month. My TM is normal, and it has historically been very accurate, so I am clinging to that. Maybe it is just because of exploded liver mets. ("Exploded" is a medical term, right?) It sure sounds like X is not being nice to your gut. Your onc said suck it up, but did you actually get an exam? If you know what is going on, you'll know what to do for it. PCP? Onc nurse? I do note that lactose is the first inactive ingredient listed for Xeloda.
Luckily I have a dishwasher, but for hand-wash items I use cold water. I even wash my face with cold water now so I don't get hot water on my hands. Lukewarm showers. So far, so good. My cats don't help, either. It's a good thing they're cute.
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I didn't get an exam, just emailed him and he had a reason for why all 6 se were not from X. Red spots on face-not until later in the treatment. Constipation-no because it causes diahrrea. Bloating-a precurser to diarrhea. Depression- due to my clinical situation. Whatever. I guess I'm confused and can't tell the difference between c and d. Red spots in my imagination? My "clinical situation" has been going on for over 5 years but okay, I'm suddenly depressed about it. I emailed back and basically told him I am an individual person regardless of what is typical and I will do as he says but if it gets worse I will be harrasing him. I hate when he dismisses my side effects. But if I mention a symptom that did not even enter my mind as a se he will say "oh yeah that's a common se". Idk what he is thinking. Things go great for months to a year and then he will do something like this which pisses me off big time.
I really hate cold or even warm showers. I don't know if I can do that with winter on the way.
I think exploded is a clinical term lol. I always remember a friend of mine who had a scan where everything was stable, then 2 weeks later she was dizzy, had another scan, and it was in brain, liver, lungs, lymph nodes, and I think bile duct. Or somewhere weird that it doesn't usually go to. That's what I think of for exploded and it makes me nervous!
I hope those appts you have go well and the bloating is just a precuser to exploding diahrrea.
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Thanks for the option idea - the KCH Cancer Center has TruBeam. http://www.kch.com/cancer-care I don't know if this does what you have said, HLB, but it is supposed to be minimal. And hits microscopic areas, proven w the bronchial tube they cleared from a node mass.
And I see I have access to this CyberKnife - very interested. Same team as the TruBeam in Warsaw but this is in Fort wayne. Driveable in a day there and back, getting excited! edited to add link http://www.roafw.com/content/cyberknife-non-invasi...
Dr. Ranck is my RO.
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HLB and all interested: I did get some pesky side effects from X during ad after my horrible first course but I have now come down 20% (from 5000 per day to 4000 so still high dose)and have had a better time. Here's what I get and what I do:
Feet/hands: Mine were horrendous on the larger dose but not too bad now. I moisturize them like crazy and avoided the blisters I got to from high shoes first time (I couldn't walk for 3 days without severe pain) . They are def much better (also see next point)
Last Friday, I did get a really itchy rash on my feet (so tickly too) and up my legs and seemed like it was going everywhere. I took a Benadryl tablet (form a pharmacy) and it was fantastic. Also my slightly red feet inflamed seemed to really calm down - back to feeling normal so it wasn't just the rash that it helped. I checked with my MO and she's happy I take it when needed, but I'm trying not to jump to this too quickly.
I get nausea - so I take Zofran (Odansetron) as required. My primary care doc was really helpful in explaining all my drugs. I'm on a low dose (4mg) so can take 2 if needed or take one but more frequently. I also have Prochlorper - which I can take as well as Zofan. I have been actually sick a few times - and its alway better out then in when I feel that bd and not just nauseous. Funny I was never actually sick on AC/T chemo but I also had Amend with AC then. After I finished the first 14 days dose the nausea actually continued for a few days (I've heard other say the same)
I do get diarrhea - though not too crazy and too urgent, and the Zofran seems to counteract that. So I am taking one ore two laxatives occasionally to stop getting too blocked. (I also take Hydrocode as I have arthritis and sore hips so sometimes need that boost to get going)
Sometimes, I get stuck with feeling sick and also feeling blocked - which can lead to both at once - not my best scenario and I am trying to learn how to keep ahead of it so I don't get in this position. When I'm this way I do get really rumbling in my stomach but am blocked so can't do much to help. So iPad to keep me occupied in the loo (toilet I'm English!) with sick bowl and then I can try to wait it out! (sorry if TMI lol) Always better out then in!
I have been v tired - similar to on Ibrance, but I think I might get this sorted too and cope with this better.
I want to get to the point where I can lead a roughly normal life - even if a bit compromised. Its a pain but I'm determined to give X a real go as I hear its a great drug for my liver mets.
So my advice - get ahead of those SE's and they won't bite as bad.
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Leftfoot: so sorry to hear your news. However expert you are and however successful - its such a blow. Wishing you successful next treatment. Your time X is an inspiration and gives me hope for the future.
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Yikes, HLB, by exploded mets I meant cancer that had been destroyed by Xeloda. The idea is that there is still cleanup to be done in my liver.
Regarding your "clinical situation", depression and fatigue can look similar. Not every doctor is qualified to distinguish.
Now for the symptoms we have been discussing. Please forgive the odd formatting below. I cut and pasted from the capecitabine professional section, side effects at drugs.com. Bolding is mine. (I've deleted the rare side effect sections because they are not relevant to our discussion.)
Dermatologic
Very common (10% or more): Hand-and-foot syndrome (up to 63%), alopecia (up to 41%), dermatitis (up to 27%), nail disorder (up to 14%)
Common (1% to 10%): Rash, erythema, skin discoloration, dermatitis, onycholysis, pruritus
Uncommon (0.1% to 1%): Blister, skin ulcer, rash, urticaria, photosensitivity reaction, palmar erythema, swelling face, purpura, radiation recall syndrome...Gastrointestinal
Very common (10% or more): Diarrhea (up to 67%), stomatitis (up to 67%), nausea (up to 45%), vomiting (up to 35%), abdominal pain (up to 35%), constipation, (up to 20%), GI motility disorder (up to 10%), dyspepsia
Common (1% to 10%): Upper abdominal pain, lower abdominal pain, upper GI inflammatory disorders, upper GI hemorrhage, ileus, dry mouth, mouth ulceration, gastritis, abdominal distension, gastroesophageal reflux disease, oral pain, dysphagia, rectal hemorrhage, oral dysesthesia, oral paresthesia, oral hypoesthesia
Uncommon (0.1% to 1%): Tonsillitis, oral candidiasis, gastroenteritis, tooth abscessOcular
Very common (10% or more): Eye irritation (13%)
Common (1% to 10%): Abnormal vision, lacrimation increased, conjunctivitis
Uncommon (0.1% to 1%): Visual acuity reduced, diplopia, dry eye, eye pain, visual impairmentOther
Very common (10% or more): Fatigue/weakness (up to 42%), pyrexia (up to 28%), edema (up to 15%), pain (up to 12%), asthenia (up to 26%), lethargy (up to 10%), temperature intolerance, tinnitus, hypoacusis, hot flush, flushing, peripheral coldness
Uncommon (0.1% to 1%): Vertigo, ear painPsychiatric
Common (1% to 10%): Mood alteration, depression, sleep disorder, insomnia, anxiety
Uncommon (0.1% to 1%): Confusional state, panic attack[Ref]0 -
Scwilly, apparently we were typing at the same time. Thank you for sharing. It sounds like you are tuning into your body and are well on your way to figuring out how to work with this drug. We really do a lot of problem-solving with this cancer business.
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HLB- do you take Reglan? It helps to keep things moving. I had two blockages last year. I looked nine months pregnant. Had to have my stomach pumped for over two days. Horrible experience. I have learned to not eat foods that are hard to digest. I love nuts and popcorn but avoid them. Even lettuce is hard to digest.
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Scwilly, thank you, very helpful and thorough! I do try to be prepared for se rather than just waiting for them to happen because I have to work FT. Luckily my boss is wonderful and understanding but I don't want things to get to where they're better off not having me and hiring someone else. My experience gives me an advantage and even with occasional time off I my contribution is worth it, imo, but they are all about the $ and the numbers lately.
Diana, I do not take Reglan but I will certainly mention that to the onc. It seems that even meds that typically cause D will give me C, for example metformin.
Shetland, thanks, I did respond to him that these were all on multiple chemo se sites. I do not complain about trivial stuff and do what I can to take care of things myself. I was surprised that the conjunctivitis was there, but it's probably because immunity is down. I thought I should tell him because it's so early and all these things are already happening.
Bluebird, I just remembered the name of the machine, VERO. I've never heard of that one you mentioned but it looks like you have some promising choices to look into!
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HLB- I took Reglan with meals and before bed. It gets things moving to help avoid a blockage. I don't take them now unless I skip a day. I eat cereal before bed I I usually go like clockwork. I never want to have my stomach pumped again. I thought pumping your stomach took twenty minutes not days. Thank God they gave me Versaid when they put the tube down. I don't remember it. Our new normal is anything but normal.
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Shetland, I can't remember where, maybe even this thread, a husband said his wife developed ascites on X and what happened was the cancer was being killed so fast that it clogged the liver!
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Yes, that was me that posted about my wife's liver and xeloda. Her mets were extensive, multiple discrete mets in one lobe, and diffuse mets in another. I can't remember the time line exactly, but around the second cycle of xeloda, despite falling tumor markers, she developed Bud cheri syndrome, which is a catch all phrase for saying the blood flow through the liver is impaired. That caused hepatic hypertension and that caused ascites. At first they said she was constipated. They said it was gas. She tried everything, even the laxitive they give you before a colonoscopy that completely cleans you out. That didn't reduce the belly bloat either. Then finally at emergency they used ultrasound, found it was fluid, and drained her. The fluid accumulation got worse as the cancer got better. At one point she was accumulating 5 liters of fluid in less than a week. A drain tube was installed so we could drain her at home. The put her on blood thinners and diuretics. It was a very dark time. Some Doc's told her she was dying. She took longer breaks from the xeloda, and reduced her dosage. Eventually the fluid accumulation slowed, and eventually stopped. She quit the diuretics and blood thinners completely. It was a miracle that we prayed for and received. The Doc's think it may have been an immune response to the dying cancer cells. No one can say for sure.
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Thank you Husband11 - all details help as we go along. I am so glad she hasa come through that dark time, and you.
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Wow husband! That was more of a nightmare than I realized the first time I read it! Thank God it's over. So many weird things happen and if it's not typical or what they see the most, the docs don't seem to have a clue about it. That's where this site comes in and is so helpful!
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