All about Xeloda
Comments
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Gracie, I'm so sorry that you're in pain. I'm glad that you are able to leave the hospital. I've had radiation 3 times. The last time was cyberknife to a large spine met that was causing referred pain in my hip. Cyberknife was a one day treatment. I did not have to stop Xeloda to have radiation. The pain went away almost immediately.
Lynnwood, I've never heard of the zofran patch. Thanks for that tip! When I had nausea on a PARP inhibitor, zofran, and LOTS of ginger tea helped. I also took a probiotic and ate almond yoghurt. You took 4600/day, right? That's a really high dose. I would ask about a dose reduction or change to a 7 day on 7 day off schedule. I started at 3500mg/day 14 days on/7 days off. My dose was reduced to 3000mg/day due to hand/foot syndrome. My oncologist at Stanford and UCSF oncologist said that they were comfortable with me dose reducing to 2500mg/day. My hand/foot syndrome was a sign to them that my body was converting Xeloda properly. The dosing is based on surface area ( I'm 5'9" and 134 pounds).
Both nausea and pain drain my energy and discourage me... I feel for you both and hope you get relief soon!!!
Hugs to all! Theresa
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Gracie-good news..I think! Sure hope they find the reason quickly.
Theresa-thanks! I did call my chemo center today and talked to the head nurse about Urea, and she did order some for me that I will pick up tomorrow. And I also have to stop the X mid-cycle and wait to see if I heal up quickly or not. I will have a CT scan on May 7 and see my onc May 10.
My feet and hands are worse today with the raw spots on my feet, and a lot of my finger creases are cracked-hurts to open my fingers the whole way.
I have been following the DS8201A (Super Kadcyla), and asked my onc about it a year ago. But he won't consider it until it is in phase 2 and has a name....LOL.
I had Kadcyla for almost 4 years until it stopped working in Nov 2017. The nausea and nose bleeds were a pain, but at least I didn't have sore hands and feet.
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Theresa, thanks for your kind words! I thought 4600 was a high dose but I’m a big girl, 5’10” and 255. When I asked my onc about the 7/7 schedule she didn’t rule it out but said she wanted to start with the protocol of administration. Wants me to see if the zofran patch works, I’ll put it on before I start back on Saturday. I can deal with pain pretty well but nausea always knocks me down. I’ve always been prone to car and motion sickness so maybe thats why I’m struggling
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Denny, may I recommend Lansinoh for the cracks on your fingers? It is the only ointment that really helped mine feel better and get better. (I had a few cuts when I took a higher dose of X, nothing as bad as yours. So sorry you have to deal with it. ) Find it on the baby supply aisle, with the breastfeeding accessories (irony). Purple tube. Its texture is like Vaseline, but it is modified lanolin, allergens removed, not a petroleum product.
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Denny - I also second Lansinoh for your hands and feet. I use it with nitrile gloves on my hands at night. I used it on my significant other when he had radiation to his tonsillar cancer. The radiation oncologist always wanted to know what he was using because his skin wasn't like raw hamburger at the end of treatment. It's not cheap but it sure does work!
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Hi, ladies. I just finished day 7 on X, felt like a month. Yes, diarrhea for first 3 days, nausea, dizziness, taste changes, etc. I'm sure SE will get better as my body adjusts but for now everyday seems like there's a surprise waiting for me. Yesterday pizza smelled so good, tasted good then the diarrhea hit. UGH Even potatoes taste terrible to me, it's my favorite. In fact, my nickname is Spud. What will Spud do without spuds? Will this taste thing go away or stay the whole time I'm on X?
Joyner Remember last year when I was in Maryland while you were on your boat? Wish I was going again, glad you are in spite of HF. I don't have it yet but I am not good a using creams. I have the UREA cream 40% but it's so thick! I know I need to put on my big girl panties and make myself put that cream on morning and night. No more excuses. Hahaha
Mia that trial sounds so interesting. I'm going to ask my MO about it. She said she only had phase one trials and I shied away. But no SE! That would be awesome, maybe not right now, she wants to get my mets under control again before doing any trials. Someday?
Macie what more can happen to you girl? Sounds terrible. So sorry.
Shetland is Lansinch less thick? Maybe I would like it better than UREA.
Lynnwood I have zofran pills but patch sounds better. I haven't taken any because they used to make me constipated, that's worse than diarrhea to me. I have anti diarrhea meds but that does not stop the constantly nausea. Not vomiting, just feeling green.
It's good to be back here getting encouragement. I was sick, then busy with Easter and family then more remodel stuff.
Joyner do you leave today? I have family coming down from Oklahoma to visit me next week for six days. Fun but means I need to do some cleaning. My grandkids loved the confetti eggs I got for them but I keep finding it everywhere!
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Thanks Shetland and Wallaby! I put that on my shopping list.
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I just finished reviewing the detail of clinical trial testing GSK3326595 a "protein methyltransferase inhibitor" or also known as an "epigenetic drug" which is thought to work by modifying proteins that may affect the genes that are responsible for growth of cancer.
Contrary to what my oncologist described, this drug has the same number of nasty side effects as of the typical chemotherapy drug plus a large number of invasive tests.
One of them was the need to test blood 10 Times every 2hours.... while they figure out the dosing.
I figured I would have to stop living, and move to Rockefeller Center where they are located, and I'm not about to do that.
Tomorrow morning I'm meeting my MO to go over chemotherapy options, can you help me chose which one to start with? Obviously, I'm looking for the one that's less likely to damage me permanently.
I'm so sad right now...I wish I could stay on swexeloda, although it didn’t stop progression in the liver.
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Grannax, me too on the nothing tasting good. I have no appetite! I took two and a half doses and ended up in the hospital( for a different reason) so just started back up this morning! Already have mouth sores!!! What the heck!!!! The nurse on the oncology floor at the hospital said salt and soda probably work better than the magic mouthwash, that’s what I’m going to do.
Lynnwood, I’m on 4000 a day, and I feel like it’s alot! And I’m heavier too.
I took my four just a few minutes ago with whipped cream to try to protect my mouth. I’m shaking like crazy!!! This med scares the heck outta me!!!
Fighting just horrendous constipation from all the pain killers and nausea meds the last few days. Plus really super bad hemorrhoids!! (Sorry if tmi). I’ve taken miralax the last two nights and used suppositories. I’m going to take an actual laxative today if I have to. Hate to do that because it will flare up my colitis, which might already be flaring!!!! Sigh!!
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Miaromix………..You have my heart felt sympathy. I know how you feel, You may remember my post in early Feb. I described that I had 4 areas on my spine/pelvis that were mets. I have small "spots' on my lungs that could or could not be mets. But, back then I still had the original 6cm breast tumor (had no surgery) plus a cribform mess of cells in situ had also developed in my tumor breast. The cribform mass had started to grow onto my skin at a fast pace. I documented it with pics. So, my ONC said Taxol chemo for three mos. 3on1 off just to stop/heal the skin mets. Afraid of ulceration. After that the plan was to go to Zeloda or another hormonal.
Yesteday I had my ninth and Last (?) chemo. BUT, now my ONC and nurse just thru physical systems and my "excellent bloodwork" (liver's fine, white and red counts are almost normal)) want me to stay on Taxol longer. Before chemo, I used a cane and my back had constant areas of pain. Took meds to sleep. Absolutely pain-free. That's all gone now Miaromix. Praise God. Also, the original breast tumor is soft and palpable before it was rock hard. It's also noticeably smaller. Bad part, the skin nodules are not shrinking. BUT, and this is hugh, no more are developing. (pics are proof) I have scans this coming week and if they show the results that my ONC suspect they will...….well, then I have to decide about staying on Taxol (amount of time not discussed)
My side effects at the beginning were moderate fatigue. No 8 and 9 were the worse. Depression then had set in hard. (have suffered thru clinical depression episodes all my adult life)
So, who am I fooling, of course, I will have to do another few months of Taxol. BUT only if I can get the depression under control a QOL thing. No neuropathy. ONC said to take B12 500-1000 a day.
Truthfully, I really don't know about long term side effects (sorry) all I know is that Taxol works. Talk with Shetland Pony (I think) she has nothing but high regards for Taxol as it took her to NEAD/NED forget which one. Your in my prayers. HUGHS
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thank you Snooki for sharing your positive experience with Taxol. I’m so happy for you! May the rest of the treatment get you to NED for the rest of a long and joyous life! Depression be damned! Do you know about this supplement called Sam-E? It’s very effective without any side effects
Just curious, is Taxol a drug that causes the hair to fall off? It seems you’ve suffered none of the usual SE such as neuropathy, nausea, destruction of the digestive system, and aberration of bloodwork that these drugs are known for....were they perhaps conservative with the amount they administered?
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Miaomix, just thinking. If you are going to try to use Taxol, why not look into the clinical trials with the oral form of the drug with your onc? SusanSF was offered that route by her doc in California. She is usually well informed about latest promising trials so she might be onto something.
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Mia No, I've had none of the bad S.E's. In fact my ONC are rather amazed. I do get premeds for nausea and have pills to take. I took the pills a couple of times but they gave me a headache so I quit. ha. luckily no cookie tossing. No diareaha (sp)nor constipation.
I think I might be on what you would call dose dense. It's 126mg. It goes according to weight. Plus I drink an enormous amount of water. They recommend 2/3qts. At first I couldn't but found with a slice of lemon in it, I can drink it all day.
Yes, I've lost 90% of my hair after week three and then it stopped. Sigh. A small price to pay. I've heard about Sam-e but have never tried it . Thanks for the reminder.
Another thing, my ONC said he'll work with me on schedule. Now I'm 3wks on/ 1 off. He said there's a dose dense 1wk. then 3wk off. Or I can do 2on and 1 off.
Also, I asked that my steroid be halfed this last time to see if the depression lifts some. (I've heard bad things about steroids) So, crash day is tomorrow, so we'll see how it works.
Also for more info on Taxol, 50's Girl, is on the MBC taxol group and always has large interesting posts.
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Grannax: Lansinoh is very thick. When you squeeze it out of the tube and get it in your hand, the warmth of your hand spreads it out a little bit. But it works wonderfully, especially if you use gloves on your hands at night after applying. Good luck!
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I'm going to be leaving the Xeloda thread as I have to move to Doxil treatment. I've received a lot of information on this page for which I'm very thankful. I have started a new thread "All About Doxil", to try to put informatioin about it in one thread. If you or anyone you know is on Doxil, please direct them to that thread so we can all benefit from their experiences and input.
I wish you all the best of luck on Xeloda. I had such high hopes after reading about how long some of you have been on it but, alas, it's not to be for me. I only hope Doxil is successful for me.
Cindy
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Daniel, my MO runs clinical trials at MSK. He told that there were no slots available to the other trials he thought I would qualify for, and the one he recommended was supposed to have minimal side effects. That however, is not the case, and the number of controls and tests I would have to undergo would mean stress and misery.
And for what? This could be one of those afinitor like drugs that doesn’t work at all.
The problem as I see it with clinical trials in general, is that unless the payback is a major one, it’s all downhill from there. So far we have only one case were immunotherapy worked. Even Zarovka didn’t make it, and she was an extremely prepared, intelligent and proactive woman.
I wanted to postpone chemotherapy, but this drug is chemotherapy in a pill form, and likewise dangerous. From the number of EKG to be done daily, probably extremely damaging to the heart. They are working on dosage, and I would have no control on how much to take
Im not sure taxol is the answer either. I know it’s a very powerful drug that works, but I would take it primarily because is first and foremost an antifungal, but I’m not ready to shave my head yet....
Like everyone else, I feel stuck between the rock and the hard place when it comes to cancer care....I’ll see what my MO suggests tomorrow. I’m sure he’ll make a list and tell me to chose....
Thank you for your support Daniel!
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Snooky thank you for the extra explanation...the picture is much clearer now. Steroids is something I can't take as they keep me up at night.
Isn't amazing that for every medication we have to take three more to cope with the side effects?
Sometimes, I think I'm in a madhouse...living a nightmare from which I'll never wake up
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Denny123: I keep going back to your original responsse to me April 6. My soon to be ex-MO seems to be in no rush to help and the BC Cancer Agency is a mess. I have YET to start treatment for f** sake! On Monday, I have an appointment with a new MO, highly rated and at another facility (also highly rated) I look to you with liver mets that cleared up and gone for 17years! There is still hope for me
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Grannax, I so well remember our plans to wave at each other as we passed by Kent Island on the boat on the way down the Chesapeake! Better days...but better days ahead, too. We won't head north on the boat until July, since June is so pretty here and June is "iffy" in Vermont. Might as well enjoy the best of both! Hoping to be able to enjoy all. HFS getting a bit worse, gradually. Thanks for all of the guidance and tips, all!
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Grannax, Lansinoh is thick, like Vaseline. To my mind it is more for healing cracks than for the daily lotion. For a foot cream that has urea and no fragrance or parabens, I like O’Keefe’s in the blue tub. I alternate with some other lotions that have coconut oil, etc. For me the side effects lessened after two or three cycles, as if my body adjusted, so I hope yours will lessen too.
Gracie, sending good wishes that things calm down for you. I’m glad you talked to the oncology nurse. Those nurses can be a treasure trove of good advice.
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Wallaby, so sorry Xeloda is not working for you. It is apparently not working for me either. I don't know what is next yet though. Good luck with Doxil !
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Amarantha: Sorry to hear that for you also. How are you doing with the ascites bloat? My friend asked me the other day how I was doing and I said I was still masquerading as the Hindenburg! Today I was supposed to have a CT scan but that didn't happen because of conflicting orders from the physician. One order said "chest/abdomen with contrast" and one said "chest/abdomen with and without contrast". The imaging center had been calling the doctor's office since April 22nd, trying to clarify which it was, but the doctor's office had not called them back. Needless to say, I was not a happy camper! I'm generally an optimist but I'm finding it more difficult lately to maintain that outlook. I wish only good things for you whatever treatment you end up on!
Cindy
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Wallaby and Amarantha so sorry for X fail. How long did each of you get on it? I'm only in my second week of first cycle but I felt so much better yesterday. I'm hopeful that my SE will continue to lessen. I think my PET will be at the end of May, after my second cycle.it seems like that would be too soon to tell.
I feel bloated since I've been on X, I don't know what's up with that. I've never had acites.
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Does anybody know if I can take iron with Xeloda? I know I’m anemic and took it with Abraxane but didn’t know about X.
Kind of freaked out today...I don’t seem to be tracking straight! Feel like I’m drunk!!
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Gracie....the only thing I know is that cancer cells use iron...maybe that's why we all experience fatigue with this disease. Eat a steak instead of taking supplements because they are constipating.
You might want to consider taking some B complex instead. But you need a good brand, otherwise they won't do you much good, Thorne and Metagenics are reputable companies.
On top of a few b complex capsules I also take extra B12 and B6 and biotin. My nails were ready to crack from the numerous vertical ridges that had formed, and now they are good and strong like they used to be
Lately, i started brewing fresh ginger in a pot of water for about half an hour and then adding a few green tea bags for extra kick...
My research and a consultation with a nurse on Friday confirmed that these are all okay to take with cancer medications. The only thing she objected to was Vitamin E.
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Gracie, that sounds alarming. I don’t know what is going on with you, maybe it is ok, but if it were me I would not wait until Monday. Please call your doctor and describe what you are experiencing. And please don’t be alone, just in case you need help.
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Grannax: I started Xeloda on Sept. 7 this year and finished my last dose on April 19. I surely hope it works for you, as it seems to have worked for a lot of those on this site. As I said, I had high hopes for it with it's track record but, as we all know well in the MBC game, sometimes it works for one and not for another. I got a lot longer time out of Ibrance with less side effects. My MO kept track of the Xeloda effectiveness by monitoring my tumor markers as I seem to have very sensitive markers. They went from 200 to 50 after about a month on X, then have recently began to creep back up. That, along with the ascites, let us know that X was failing to do it's job.
I sure hope Doxil makes some improvements. Other than the ascites, I don't feel bad, just tired of hauling this basketball around on the front of me!
Good luck!
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Howdy friends.
Updates - Not great news : my oncologist called yesterday to share what the PET scan showed (I had myself been pouring over the images on line, to which miraculously I now have access, but had no idea how to interpret, except that I could see lots of places where the images lighted up) - She told me the scan showed new activity in the bones (spine) and more lymph nodes, and both lungs have fluid in them, which explains some of my discomfort - she said she'd rack her brains for a new solution (different chemo) for when I see her on May 2, and that she was mailing me a prescription for a medication to help the bones (I've had it before - Xgeva) and also for an MRI to happen on the 15th of May.
I asked her if more radiation were a solution, and she said yes, if I were having pain where the damage in the spine is, we could do that, but first we need to do this MRI to see the detail of what is going on in the spine. (The TEP scan lights up areas of « activity » but does not show the detail of the damage).
I've been in enormous discomfort lately, from upper back and ribs, also very out of breath, so juggling all kinds of different painkillers which leave me groggy. Lately I've added Naproxen, which is actually unavailable in France, but my mother brought me a bottle last time she came (contrebande !) and I think it helps immensely with the back pain and rib pain.
Now we have to cross our fingers now and hope that my oncologist can find me some medication that my cancer is not already resistant to.
Wallaby, the bloating is worse than ever. The human Hindenburg, yes that describes it ! My regular doctor said it was lymph and water, but the recent PET scan did not seem to confirm that, although it did confirm the skin of the abdomen is thickly infiltrated. When I see my oncologist on May 2 I am going to insist with questions about the bloating. it is not necessarily the fault of the Xeloda, because it started before I began it, but certainly it has done nothing but get worse in during the very short time I have been on.
Grannax - I have not even completed my second cycle on Xeloda, granted more time is warranted to see if it could be working, but there has been much progression and very rapidly, that is seems my cancer is reacting as though it were encountering no opposition at all.
If either of you get any information about the bloating or find a solution, please let me know. It makes me feel like hiding in a closet and seeing nobody.
Meanwhile, I have to take triumphal pleasure in small improvements, like finally having the pain and discomfort subside enough to do something besides sleep.
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Amarantha: I sure know what you are feeling with the "hiding in a closet and seeing nobody"! There is a solution to the bloating if a new chemo will not alleviate it: paracentesis. It is the same procedure they use to extract fluid from lungs, just inserted into the abdomen to drain the fluid. If something doesn't check the activity of the cancer, it will come back, but it provides temporary relief. Fluid in the lungs is how I got diagnosed with Stage IV. I had 3 liters of fluid in my right lung because there was a tumor there. Once I had that drained, it felt SO much better, and I had the tube in from March, 2016 until early October, 2016. I still have a little fluid in there but not enough to create a problem. When I went off Affinitor, I developed the bloating plus a lot of gastric discomfort. After I had been on a couple of cycles of X (one week on, one week off cycle), it started to go away and stayed away until X stopped working in the last month. I sure hope you find a resolution soon. I'd advocate for the paracentesis and they likely (I would hope!) might do a thoracentesis for your lung fluid. Both will make you feel so much better!
Cindy
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Oh yes, Wallaby, I will absolutely avocate for those two things. So there if there is fluid there, it means there is a tumour they just haven't found ? Same in the abdomen ? No one has said there is a tumour - although, I guess since what I have is Inflammatory Breast Cancer - it will probably continue to be the case of little tiny particles clogging up the lymph and nothing to see. Well I sure do hope they will consent to drain out the fluid in both cases. Me = miserable, LOL.
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