All about Xeloda
Comments
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Thank you, Goldie. I was so discouraged by what my onc said that I spent much of the weekend throwing things out so that my husband wouldn't have to. I'm a bit better today. I know that you're right and that the doctors can't really know what to expect.
I have bone mets only so far, after 2 years and 9 mo following diagnosis of mets to my bones. My MBC was discovered by accident after 26 years in remission. The docs all thought I was "cured", but I knew that it wasn't necessarily so.
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Joyner...OMG! I had read your original diagnosis. 1991, incredible. I too would have thought cancer free after so long. Glad to see you climbing out of that rabbit hole, been there many times myself. I try not to stay too long, as it really doesn't change anything, except to perhaps make things worse. You know what they say about being depressed, lowers the immune system. You must have been quite young at diagnosis. Like my onc always tells me, this is MY ship and I am the captain. He also says he likes to treat the patient, not the TM's. May you have a long run with Madame X.
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I was 44. I spent the first year with treatments and reconstruction....and with trying to identify my husband's next wife, in an attempt to choose whom I thought should rear our 6 and 8-yr old boys. My husband was not amused by or cooperative with my efforts. We're still happily married, and the "boys" are 36 and 38.
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Amazing story Joyner. So glad you were able to watch your boys grow into men and that you are still happily married. You are truly blessed my friend. I was 49 at diagnosis, 11 years ago. My kids at the time were young adults in their 20's. Now 36 and 40, I can't believe it!
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I have been on Xeloda with Herceptin for 21 months and did have some hair thinning for a few weeks when I started. But it is okay now.
I agree with Goldie, joyner-that doctor is wrong!
Good luck Goldie! My next CT scan is in a few weeks.
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Joyner, I loved the sentence “My husband was not amused by or cooperative with my efforts“ Don’t let that doctor get into your head. They have no idea how long a certain treatment will work.
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Denny, wishing you all the best as well.
I posted a bit ago how my left foot and right hand were the worse with HFS. I came to me the other day, that those are my predominate extremities. Anyone else? I know, it's dumb! Just curious, and it really doesn't matter.
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Joyner, gosh sorry your MO had to be so discouraging ☹ I do agree with goldie that the MOs have no way of knowing. We can see here that everyone seems to respond differently.
I would love to hear from others who have been on Xeloda and for how long and if MO indicated what comes next.
Blessings and healing to all Hugs
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Thanks Goldie. My big toes take turns getting sore, but the occasional hand cracks are on my right hand since that is my dominant hand.
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Thanks to all for your wonderful encouragement. Thank goodness for us and for support.
On another note, my situation changed in February: just as I transitioned to Xeloda from Ibrance/Faslodex (a week after beginning Xeloda), an unknown reddish lesion appeared on my forehead, just inside the hairline (about .5 inch in diameter or so and irregular in shape). It turned out to be a SKIN MET....horrors! The Xeloda quickly zapped it, but that was a scary thing, AND when they biopsied it, it was triple negative! I had been ER+ PR- HR2- for 28 years. Thus, my onc says that they have to treat for worse case, which means the TNBC. I don't know what comes next when Xeloda fails, but my options are for what is available for TN. I made them go back and try to re-biopsy, but there wasn't enough tissue left on the slide. I grilled my onc at this last visit, and she checked the file and noted that the first biopsy appeared to have achieved adequate tissue for a good reading. She also noted that some BC cells can be ER+ (or whatever) and others TN. Nothing, apparently, is certain in this wretched disease.
I don't notice a difference between right and left extremities, but I do notice a difference in time of day: my hands, in particular, get worse late in the afternoon. They tend to get redder and angrier looking and sometimes throb. Does anyone else see this? Also, like some others, my HFS seems to get a bit worse during my week OFF.
Hugs to all, and Goldie, keep us posted. You've been our standard-bearer. Thank goodness we've gotten those babies up and running!
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Joyner, I have had friends with TN do Herceptin, but I'm sure there is more out there. I think the HFS gets worse as the day goes by because we are using our hands and feet. I use gloves when doing any dishes or cleaning, especially bathrooms, but not dusting. Just when my hands are exposed to chemicals or water.
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Lynn,
Liz had a very similar situation to yours...
Liz's original diagnosis 13 years ago was ER+ PR- HER2-. She had all her regular mammograms and reports were always positive. She noticed a small regular shaped sore on the top of her head that wasn't healing well. Nothing too alarming other than it wasn't healing.The biopsy results of the skin lesion were TN. It wasn't clear where the primary site was as nothing showed up in her breasts but the mets were extensive. Comparisons to her original samples were made and the current samples were different. The tumor board came to a best conclusion that it was TN MBC and are treating it as such.
We continue to pray for healing and blessings to all.
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Joyner-my chest node mets turned from Her2 +++ to BRCA2 positive somatic. So then I was able to get Xeloda after the mets were gone from a clinical trial.
Cancers have been often found to change properties and it is great that they now know that in order to be able to effectively offer other chemos that will help.
My hands and feet also get worse on my off weeks and worse as the day progresses.
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Dear everyone, all of you who have been so generous and helpful with info and encouragement. I've been on Xeloda about 3 1/2 months and on October 14, I had my CT scan and MRI to see how well Xeloda's been doing for me. Nothing. Nothing but "mild progression" and rising TMs. On Oct. 16, my MO gave me my options. #1: double the Xeloda dose from 2000 a day to 4000 a day. I'm just 5 feet and weigh 101 pounds! Does anyone really think my body could survive a 4000 dose? #2: combination of Exemantane (Aromasin)and Everolomus (Afinitor); #3: single agent chemo-Doxil ("unlikely to lose hair"), or #4: taxane group—Taxol or Taxatere. Follow-up appointment with her is November 6, when she will probably be expecting my answer...my choice. I have to say I'm blown away and having the utmost difficulty with this. And also, I should add that there is a fifth option...declining further treatment, and palliative care, which I know nothing about yet, but interested. Any input would be a godsend and very greatly appreciated. I'm not doing well with this at all.
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Kendrasue
I am so sorry X is not giving you good control. FYI my MO has me on 4000/day with some SE but I am larger and taller. I will know in 2 weeks if it worked for me.
it is my second line after faslodex/verzenio did not achieve shrinkage. She put me on X to hit the cancer with something it has not seen in the past(5-fluorouracil). maybe that can be a criteria for you- seems your MO put several treatments in your “bucket". Maybe the next one will get you better results.
I have a friend who went on doxil for a year and is taking a 6 month break. It worked to bring her TM down and stabilize her tumors. She only had hair thinning.
Prayers that you have peace and wisdom in making your decision. hsng in there!
dee
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Kendra, I have been on X for 4.5 years, all along having rising TM's and progression in the bones. I have stayed on it as the cancer has not made it to an organ and I have no pain. Cancer in my hips, groin, ribs, spine, jaw and skull. Why double the dose? Why not just add another pill? I personally don't think you could handle 8 pills a day. When I began X, and I'm 5'9 150 pounds, and I could not handle 7 pills. I had double over cramping and explosive diarhea. So I say try 2500, and if that works ok, then you can try 3000. I do 2500 a day, 2 in the morning, 3 at night on the 14/7 schedule.
Dee, I don't know how you can tolerate 8 pills a day. My hats off to you! My onc wants to put me on Verzenio/Faslodex next, he said he's seen good progress with it. I'm sorry it didn't work for you. How were the SE's on that combination. Wishing you a long run with the Madame!
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Goldie
I started with the recommended rate based on height/weight of 4600/day but asked to back down to 4000 when HFS kicked in on cycle 2.
Today is day 12 on my X cycle of 2 weeks on and one off. My feet are burning and it's hard to walk without pain. My hands are also super sensitive. But days 1-10, I handle the SE pretty well. No diarrhea, a little nausea, no mouth sores, feet are peeling. I actually put on 5 pounds because of my lack of physical activity and eating smaller frequent meals to stave off nausea. I am also taking 400 mg of Celebrex, twice a day. (saw a study that recommended it- but I have been on anti inflammatories for 25 years for arthritis.)
SE repeated for the last 2 cycles - day 11/12 hits hard. Thankfully by day 4 of my week off I am mostly symptom free. Thinking about asking to switch to one week on and one week off.
Faslodex/verzenio had virtually no SE for me other than sore butt from the shots. Verzenio has the benefit over the other cdk4-6 in that it gets to the brain and has better numbers of OSF and PFS. My 3 tumors stopped growing as fast compared to before treatment scans and I had some necrosis so it was working somewhat. MO said it will go back in my bucket- but if I can get tumor shrinkage I can have liver resection hence I started X.
scans in 2 weeks-Already having some scanxiety. Trying to not think about the "What-If's" and enjoy each day for the gift it is
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AlabamaDee-good luck! Did you ask if it is okay to take Celebrex? Don't go by studies....ask your onc and specialty pharmacist.
Some supplements can negate the efficacy of chemos.
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Lizo1, thanks so much. It's helpful to know that your wife and I have similar situations. Are her other mets bone only? Goldie, thanks, also for the Herceptin information. Let us know your next plan of attack.
Kendra, I know how scary your onc's recommendations must be. It's so hard, envisioning what a new treatment may involve and praying that it works. We're all with you.
Hugs to all-
--Lynn
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Joyner there is so much going on in the TN arena. Hopeful you can get one of those treatments if X gives out.
Denny I cleared it with my MO to switch my anti inflammatory to Celebrex. I can’t function with out one. I was on an older one that did not protect my stomach so switching was good overall.
Kendra your journey is in your hands which is scary. We trust our doctors to lead us on the right path. Trust that you make the best choice.
Dee
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hello ladies,
Reading all of your experiences , gave me some hope and am able to write here. I had TNBC and was done with all of my treatments on March. But they found another 2 cm tumor in my liver while doing the PETSCAN. So now the further step is take the tumor out and my ONC wants me to go through chemo as well for precaution . Since my cancer is aggressive and according to my doctors, they think its uncommon for the re-occurrence to happen so soon. They themselves cannot confirm that there will be no re-occurrence , in order to delay the re-occurrence they want me to do the X. I am nervous about it and esp about the side effects. I am 5.2" and 143 lbs and age 36. I am confused at the same time whether i should go for X or do every 3 months of scan and wait for another tumor.
I am seeing my ONC next week to discuss more in details.
-Take care ladies
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naesha
If your only tumor is in the liver then get it out! Surgery is the gold standard when possible. Studies show PFS is much higher with liver resection.
My SO explained that the reason for chemo for the met is to make sure that they have a drug that can affect the tumor before surgery to know that they can get it under control if it returns. We don't want a bunch of micro mets showing up when the liver regenerates. Not knowing what drug to take next
X is supposed to stop fast growing cancers. I was afraid to go on it because of the SE. But I am doing ok and looking forward to getting shrinkage so I can proceed to surgery. That is where I am in my journey.
MO said as long as it is working I will stay on it even after the surgery
Hope you get results from X. The alternative for me was getting halevan infusions. X means pills and keep my hair. I hope it is working.
Dee
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Naesha-17 years ago, when I had liver mets, Radio Frequency Ablation was the method to remove tumors smaller than 3cm. Mine were too numerous and much bigger, so I had to have a liver resection, and then went on Gemzar and Herceptin which got rid of all of the tumors, TG.
But it is a very easy surgery. I agree that you should have X as a systemic tx to ward off anything else.
Alabama-I am glad that you cleared Celebrex first with your MO. Too many ladies will try anything they read about thinking that it will "cure" them....very scary.
Kendra-no way should you go with #5!! I don't like the thought of 4,000 mg of X a day, either, for you. I had Taxotere 17 years ago, and it wasn't too bad at all. Doxil also has really good results and seems to be relatively easy. I have had no experience with Afinitor, but Aromasin is very easy.
You might want to check on the threads on here about those chemos to see how the SE's are.
Prayers for all!
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Thank you AlabamaDee and Denny123 for the suggestions. We are doing the liver surgery since it is only 2cm and i think after that going with X to delay the re-occurrence. I have been researching myself a lot on the clinical trial where my cancer criteria meets.
I am worried about the SE of the X. I do not do good on nausea so worried on how it will affect my body. My ONC think that i need to do the X until they find another reoccurrence.
I also have been finding many articles on ketogenic diet not sure how helpful is this. Does anyone of you follow any kind of diet. Once my ONC said that they have clinical trial of ketogenic diet where they take the blood samples and do some testing to see whether ketogenic diet is helpful in my cancer journey or not.
Have anyone came across this kind of suggestions from your ONC.
Take care ladies
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Lynn,
We are all in this together. I hope i can speak for all the loving husbands out there.
Liz's mets are in the liver and lungs in addition to the bones. Liz has been commenting on the bone pain the last few days. We're hoping it is the crazy change in weather we are having in Toronto.
It's been exactly one year since we first found the MBC. We thank God that Liz is thriving as we had a good report today with her radiation onc.
Prayers to all of you.
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Naesha-the Keto diet is way too high in fat and not good at all for us! The best diet is a healthy, low-fat one. Everything in moderation, and no drastic diets.
In my 18 years of survivorship and research, I have found that what we eat has little to do with cancer. What does the trick is chemo. However, I won't drink alcohol, since it can increase the incidence of cancer. That is my own decision and I do get into trouble on Facebook forums when I mention it. Just do the research on alcohol and breast cancer.
I don't have nausea on Xeloda, but I did for the almost 4 years that I was on Kadcyla. So I lived on buttered noodles and mashed potatoes, and still was even briefly in NED.
I am currently NED (for 21 months so far) and am only on 2,000 mg a day of X, one week on and one week off. I would think that your onc won't put you on a high dose since you will also be NED.
Will your liver surgery be the RFA? It should be easy. I had a liver resection and not a lot of pain afterwards. Weird though, that the pain was in my right shoulder, which is common after liver surgery.
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Hi Naesha,
I've only been on Xeloda for a little under two weeks now, but haven't experienced a bit of nausea. The first few days, I took an Ondasentron an hour or two before I took my X just as a precaution, but after I forgot a dose, I discovered that there was no need to keep taking it. Good luck with your surgery!
I am on the same page as Denny as far as "diets" go. I'm 67 and have seen so many trendy diets come and go along with their faithful adherents, although no judgement here. I'm not into deprivation, because I'm low-income and one of the few joys I have is the inexpensive ethnic food (usually based on veggies) that my city has become known for. I don't overeat and avoid fast / processed junk food, but that's about the extent of my "diet." I'm not a big sweets eater and I cook most of our meals. I want food that feeds my body, soul, and emotional state. I can't afford vacations!
Denny, it's heartening to read about your 17 year survival although I'm sure it hasn't been a bed of roses to say the least! I have followed the FB page of Ann Silberman "But Doctor, I Hate Pink" since I was diagnosed with mets 4 years ago (today!) and she is into her 8th year. I've learned so much from her - including how she lived only on a little candy during a long bout of cahexia.
Peace and Well-Wishes everyone on Dia de Los Muertos.
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Katty, which Ann Silberman? I'll watch her, too, on Facebook, but there are 4 Ann Silbermans.
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Hi Joyner! I think Katty might be talking about this facebook page you can follow But Doctor, I Hate Pink
I just followed it too and I do like it. She's real but uplifting too.
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Yes, I'm talking about her Facebook page titled But Doctor, I Hate Pink. I first followed her blog which has the same title, but I'm not sure how often she updates that now. You can search different topics on her blog so you might want to check that out, too.
I first had breast cancer in 2003 and had a lumpectomy Sentinel node biopsy radiation followed by five years of tamoxifen. Then, "out of nowhere, " I became metastatic in 2015. Crazy.
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