All about Xeloda
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Yes ! But also bed is sooo uncomfortable for me, hence sitting here at computer at 3:05 am, and looking around for whatever other drug I can take. I have taken three "spasfon" - a french drug that does nothing, some magnesium, an Aleve, and what else can I take hmmm. I feel better sitting up than lying down, so maybe I will try your trick of sleeping propped up. I saw the doctor today. He prodded and pushed and poked, and said hmmm. And kind of laughed. We had a great time laughing together when he asked why I am upbeat and happy, even though all this is going on. I said it is because I am like a little puppy, when I see a human being, I think "A HUMAN BEING !!!!" and I get all rambunctious. But the pressure and bloating is just unbearable, it makes breathing hard, but also walking ! I feel like a waddling pregnant lady. Sorry for pregnant ladies. I mentioned to the doctor, perhaps it was an ectopic pregnancy (I try to think of everything). He reminded me not only I have no uterus, but I'm 57 and unlikely to have eggs (how would we know ?) and not only that, after the hysterectomy, the vagina is walled off like a little sock, and so nothing could go up in there. (That is aside from the fact that between DH and me, actual sex sex is impossible now). 'Ah, I said. So I guess that is to be excluded then' (WAHAHAHAH)? Okay, well off to bed - take two. Thanks for listening ladies.
Oh -- Wallaby, yes, Afinitor I was on for ten months. I think it is a VEEEERY BAAAAD drug.
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Amarantha: Yes, walking is an effort and I too feel like a waddling 9 month woman! Yes, the sitting up position, at least for falling asleep, has worked for me. I think it helps lessen the pressure on the stomach and lungs from the bloating. As for ectopics, I had one that ruptured and it almost killed me. If it wasn't for my husband, who was a policeman and trained (in those days) in advanced first aid, demanding that I go to the hospital from the doctor's office, the doctor, who had no clue what it actually was, wanted to send me home where I would have bled to death during the night. As it was, they took 4 pints of blood out of my abdomen! No wonder I couldn't sit up without passing out! I hope we both get some relief from this. I think my relief will be moving on to the next treatment in the chain, Doxil, which I'm not really looking forward to but we have to do what we have to do with this disease!
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Four pints of blood out of your abdomen, Wallaby, no wonder your name is Wallaby, um I mean, cause its like you had a pocket, oh ... lol, forget that. That sounds pretty extreme. Though I do wish they would just cut me open and take all the extra stuff out, whatever it is. So tired of this pressure !
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Allybee-I was told that Gaviscon would be okay and it really did help. I have been on X for 14 months and I am better now as far as my Gerd.
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Amarantha...LOL! I had a pouch all right...kind of like I do now! I know they do use a needle to aspirate the fluid in extreme cases but no one has offered me that at this point. I go on my last week of Xeloda tomorrow so I'm hoping against hope that that might give me some relief as the Xeloda has to be doing something positive or my TMs would have been through the roof and they were not. Oh well, always the guessing game with this disease!
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re: Bloating.
Cranberry pills and/or juice work *wonders* for me.
I use the Natures Bounty 4200 mg. - 2 per day. And drink a bit of cran juice every few days.
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I saw a dermatologist today about pink spots on my scalp, which I am sure are an allergic reaction to X. He prescribed Clobetasol oil and I have to see him again in June.
He also looked at my yucky feet (I am only on 2,000 a day.one week on, one week off), but I have a lot of raw areas on both feet. My onc had given me Ammonium Lactate 12% and also Clobetasol Propionate cream 0.05%. I wasn't using the Clobetasol since the directions say that I can't cover the area???
Well, since I can't fly around the house, I didn't use it. But he said I need to since it is a steroid cream. So now I have to use them 3 hours part and my beloved Aquaphor at night.
We will see.….
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My new MO says I'll be on X 3500 mg a day for two weeks then one week off. My prescription should come next week. My PET looked about like I thought it would, growth everywhere. My lung seems to be as bad as it was two years ago. It feels like I'm back where I started. But, she really likes X and I have heard good things from you. I'm ready to do this. 💞
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Grannax, it's good to hear your voice. I would certainly understand your wanting to do whatever they say, considering what you said about active disease. However, have you considered asking her about 7 days on and 7 days off? Per my understanding, Sloan-Kettering did a study which indicated that 7 days on and 7 days off was easier on side effects with the same efficacy and made patients more likely to stay on the medication.
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Grannax, I’m right here with you! My dose is 4600 a day. I’m on day 4 now. My worst problem is eating in the morning to take it, I hate to eat when I get up. Joyner, I see my onc on Thursday for the first time since starting and the 7 on 7 off is one of the questions I have for her. Sounds more manageable to do it that way
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For what it's worth, I had a PET this past Monday, and all seems stable. So far, Xeloda appears to be working, and my MSK onc is in agreement. Whew....so far, so good....
Boy, I've been seeing some really negative comments about Affinitor! Grannax, you surely weren't along in hating that drug.
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Grannax welcome to xeloda. May you greatly benefit from this relatively easy to withstand treatment. I second what Lynn recommends: try to get on the 7/ 7 schedule if your new MO allows.
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in February I took 2 weeks of X at 3000 a day for two weeks. I didn't have any SE. Then during my off week I decided to change MO. I can't know how long term TX will treat me. I did ask her about that, she said right now she just. want to get to these tumors as fast as she. I've been too long without effective treatment. Two months of hitting them hard, then re scan. I do plan on askng after I see what SE I have.
Right now I am a liver monster fighter, armed with Lady X. Hahaha. We need to give X a more fierce sounding name. 😬
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That approach makes great sense to me.
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I should have noted that I started in mid-January, so 3 months so far.
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you’re right Grannax...you’re situation is slightly different and an aggressive approach is probably called for.
May you experience a tremendous turnaround
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Hi, I´ll start my 4th Xeloda cycle at the beginning of next week. Due to HFS my dose was already reduced from 2 x 1,950 a day to 2 x 1,000 mg a day. I´m on 14 days on, 7 days off. On day 14 of my latest (3rd) cycle, my hands got so sour that I couldn´t touch anything. I seriously thought my nails would fall off. I´m thinking of further dose reduction, but does it make sense - I´m already on a pretty low dose? Changing to 7/7 in not an option. Firstly, I´m in a clinical trial, secondly I´m in public health care, and the guidelines say 14/7 for Xeloda - end of discussion.
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ADDK I'm sorry you are suffering from Hand-Foot Syndrome, and that the dose being reduced has not helped you. I too am on public health care (is there any other kind in France ? I think not) and am on 14 - 7, it is not up to me. I'm still only on my first cycle. Aside from the suffering of HFS, have you seen any improvement in the cancer ? Perhaps it is not something you can actually see without a scan of course !
I have so much spread of skin mets over my chest and abdomen that I suppose I shall be able to see improvement if it ever happens. Can I ask everyone how long it took before you started seeing some positive effect ?
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Amarantha, I´m so sorry that you have to deal with this. I can´t bear looking at my mets, but I know they are all over my left side ("breast"/expander, abdomen and back). After one of the many different MOs that I see in public health care told me that there were no more treatment options I found a phase II clinical trial and signed up. The cocktail is Xeloda+Herceptin+tucatinib/placebo, which showed very promising results for skin mets in the phase I trial. My latest scan in March was inconclusive - progression in some areas, improvement in others. However, based on the photos taken at baseline and after my second cycle the MOs decided to continue the treatment, i.e. my third cycle of Xeloda. Pain and oozing, however, exploded three days ago so I guess the treatment has failed me. I have an appointment with MO tomorrow, and will know then. I feel kind of caught in public health care financing: Our hospitals that are responsible for cancer treatment are run/financed by five regions, whereas the municipalities are responsible for wound care. So I have very sweet and caring changing nurses from my municipality coming to my home to change bandages, but none of them have experience with cancer mets. I´m HER2+ only so the number of treatments are very limited and exhausted in my case. Reading these boards, however, I think you have more treatment options with ER+, and I have found articles reporting good results with Xeloda for skin mets in hormonal receptor positive MBC.
What pain meds are you on, and are they working? What do your mets look like? I´m having gabapentin and opioids - they rather make my dizzy/foggy/drowsy than killing the pain. Sorry for my rant and hope you don´t mind my questions :-)
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Well I can combine and alternate paracetamol, tramadol (a kind of opoid), and some drops that gave me that turn me into a zombie. The Tramadol turns me into a zombie too, and it all slows my digestion down, which is already a problem, so I try to live with the pain at night if I possibly can. Last night I took ibuprofen and tramadol, and managed to sleep, and slept til noon. I feel like I have moved into a new phase of the cancer, which is no longer just silently living with me, but now is making living more difficult. Sign. Today I realise my tongue is rather hot, so I guess that is a weird side effect from the Xeloda ?
I did have estrogen receptors, but we ran out of hormonal treatment options, the cancer has been behaving as triple negative. Perhaps in time we will try the hormonal things again, but in truth none of it really worked on me.
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May I join the conversation? I'm on round 3 of the HER2Climb clinical trial (Xeloda/Herceptin/tucatinib/placebo); right at the end of round 2 my Hand Foot Syndrome exploded. Since mid March, my palms and soles have turned red, hot, callused, swollen, painful, dry and are now cracked and peeling. Sheesh! My dose was 2000 X 2/day, on 14, off 7. I am 5'7", 150 lbs. Onc gave me steroid cream 2/day and recommended Aquaphor - and Vicodin for the pain, which makes me loopy but took the edge off. Onc held the X for round 3 and I ma slowly improving. Will most likely dose reduce when I see her April 23. I don't believe the on 7/off 7 is an option for me, since I'm on trial....? But I will ask.
What is GREAT, tho, is that this regimen is working superbly!!! Scans after round 2 show amazing improvement. My onc was floored.
On another note, I have peritoneal mets and had 12 lbs of fluid drained, which helped my discomfort considerably.
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Buckeye Amy, Welcome to the conversation ! I am thrilled to hear that Xeloda is doing something good for you. And wow, twelve pounds of fluid drained ! That's what I wish they would do for me. Please tell me how the peritoneal mets were discovered. Tell me everything you know about yours. I only suspect them, but a recent normal scan didn't show anything. Perhaps it would require a TEP to see them ?
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amarantha, try to ask your onc to switch you over to Targin. It's an opioid but not as terrible as Tramadol. My wife benefits tremendously from it. We are in Italy, so I am certain they have it in France 🙂
About the peritoneal mets, as far as what I have read and talked to my wife's onc about, they dont really show up on scans so you can only really tell by colonoscopy or by measuring your CEA levels (which might not be accurate either).
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Ahhhhh Daniel, thank you so much for your feedback. That's what I suspected, not easy to see on a scan, and indeed the CEA levels (what are those, markers ?) hmm, markers anyway have been most totally unreliable for me.
I'm completely miserable at the moment, with adhesions/tethering around chest very severe, and constant pain from that as well as this crazy bloating and arrrrrrrrrrrrgh
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Amarantha, I haven´t had tongue issues till now, but my lips are burning hot and swollen, and I´ve had to change to children´s tooth paste because using my usual Colgate is too painful.
Buckeye Amy, I´m happy to "meet" another HER2Climb participant, and that the drugs are working for you. My hand and feet run crazy on day 10, so I unsuccessfully tried to find the phone number of the relevant person with the Canadian drug company to discuss the possibility of a 7/7 schedule. Till now I have (extensive) skin mets only. I think they are progressing so I expect to be taken off the trial when I see my MO tomorrow. If this is not the case I have to discuss further dose reduction (I´m already down to 2 x 1,000 mg a day).
Buckeye Amy and (wife of) Daniel86: I´m so very sorry to learn about your peritoneal mets. I cannot begin to imagine what it´s like. Cancer, mets and SEs suck, but in my weird ranking abdominal issues are the worst of all.
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Amarantha, just a regular abdominal CT scan found the peritoneal mets: my onc said my peritoneum was "studded" with enlarged nodes. It also found pleural thickening (my previous mets were to the pleura) and omental caking, whatever that is. I had been stable on Herceptin/Perjeta for 5-6 months but my Sept. scan showed progression so she switched me to Kacyla. I was on that for 7 rounds but my bloating was increasing and I just didn't feel good at all. Kadcyla did not work for me at all so that's when my onc got me on the trial.
'm so sorry for your bloating and discomfort - it really sucked!! I told my husband, as bad as the Hand Foot is, I would still take it over that fluid. My fluid buildup was gradual - I first noticed some bloating and terrible gas in July and they just kept an eye on it - it was too minimal to drain. By Feb, I was significantly worse and just miserable - I couldn't bend over to tie my shoes, I couldn't sleep comfortably, I couldn't do any physical activity. The paracentesis itself was painful but simple. It was outpatient and we were only there for a couple hours. The relief was instant. Keep asking - it sounds like you have enough fluid to do one!
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ADDK, good to meet you too!!! How long have you been on the trial? My trial rep says she has a patient who's been on it for multiple years!
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I believe a CT with contrast is usually considered the best way to detect ascites from peritoneal mets.
Regarding the discussions of Xeloda schedule — The choice of 14/7 vs 7/7 may be a bit more individualized. When I first started Xeloda, I asked my onc, if my side effects get bad, would you rather reduce my dose, or change my schedule from 14/7 to 7/7? She said that for me she would reduce the dose and keep me on 14/7, because with a slowish cancer, 14 days on gives us a better chance of hitting the cancer cells in their vulnerable phase of the cell cycle. We did in fact reduce from 2500 to 2000 per day after a while. I have been on it almost two years, with very manageable HFS and decent QOL.
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Buckeye Amy, thank you so much for sharing about your peritoneal mets. I am so sorry you have to deal with this, and certainly hope the trial will knock the shite out of it.
I finally heard from my oncologist, a TEP scan is now scheduled for the 25th April, and I'll see her the week after that. Thank Goodness the message finally got through !!
I had a miserable night with intense pain, so took all the pain meds and now I am a zombie, but I'll take it. LOL.
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Hi girls and welcome to the newbies. Just wanted to share, I was in the Virgin Islands last week for about 12 days, not a vacation, my daughter lives there and had to have emergency surgery. Anyways, I was amazed at how good my hands and feet were. I don't know if it was the salt air. I can't say it was the humidity, as I visit Michigan and it's humid there, granted not as humid, but my hands and feet show no change when I go there. There are pictures of my feet on page 313. I'm considering, if I can figure a way, to boil some water, put some sea salt in it and steam my feet!
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