All about Xeloda
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Great news, Karen!
I'm so sorry you have to leave us, Nina. Good luck with the taxol!!
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Nina, I too am so sorry to hear Xeloda has failed you after 18 months. It's a good run, but we always hope for more. I hope Taxol will be effective for you with tolerable se's. I will be following you to see how things go with cold cap and no port as that is the route I am hoping to go when X fails. Best wishes to you as you go forward with your new tx.
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NinaCA, I’m so sorry to hear this. You’ve been very helpful to me. Please don’t leave here totally. I’m off Ibrance but can still comment when someone may have a question I can answer. I wish you great success on your next line.
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I did Taxol for 4 months and never lost my hair, it didn't even thin out. But .. I am the chemo queen and have few side effects on chemo, until the feet thing with Xeloda, and dizziness at the beginning.
Good luck!
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KBL- OK. I'll stay on, lurking in the background, and come out if I can help.
Jobur- I'm now thinking no cold cap and yes to a port, the opposite of you. I may yet change my mind as I keep rethinking things.
VBishop- thanks for sharing your experience with not losing hair. I will be talking to a representative of Penguin for a portable cold cap, see if she can convince me. I'm old enough that I'm thinking my time for Me is more important that fussing with extra hours needed to save some hair (no guarantee I'll loose it or it will stay). At least not a question for Xeloda. Besides, I will be on it until it doesn't work, most people have a set 12 week timeline and then they are done. I'm never done 'til I'm done.
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NinaCa - My wife Liz did Taxol for 6 months after Xeloda and she didn't have any hair loss or thinning either. She also got a port and it worked very well. We thought the port would be the end of poking her arm for everything including bloodwork but unfortunately only certain people were trained to use the port and sometimes blood draws still required a poke in the arm. Liz didn't think it was a big deal to get poked every so often.
I wish you all the best and no side effects with the Taxol.
Grant.
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hi guys
I’m joining in the x group. I’m 8 1/2 yrs out from a de nova diagnosis er pr+ ductal in almost every bone. I was on tamoxifen for 6 1/2 yrs and was stable. About two years ago my tm’s started going up and my onc who finds them very reliable went on a hunt. Two years of pet scans and bone scans showed continued stability. After some wonky labs that showed my kidneys were not functioning great he ordered an abdominal ct with contrast and finally found out why my markers were up. My ductal cancer had mutated to lobular and was wrapped around my ureters on the outside of my bowel and had ascites and carcinoma everywhere. To say I was surprised was an understatement. During the tm increase we had decided to switch to Ibrance/Letrozale and obviously that didn’t work. So six months ago I switched to xeloda and my tm’s have not gone down but my last ct scan shows a decrease in all the cancer. I could tell something was changing my abdomen wasn’t as distended and I was able to eat and not feel full after 5 bites. Funny thing is I never lost weight-I’ve gained weight. I’m on 1500 twice a day. Two weeks on and so far so good. No side effects besides dry skin but I use udder balm and the silicone socks from Amazon. Just wanted to say hi-who knows how long x will work but every cycle is a win in my book-extending every med as long as possible is all our goals. Have a great Friday!
Kristin
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NinaCA- why was taxol chosen? is it always weekly and is it same dose as when used in the earlier phase of chemo?
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PartyofFive, so sorry it took so long to find the lobular cancer. I totally get it with a missed diagnosis for six years before it spread and they found it in my stomach. How did they diagnose the lobular, by biopsy? I keep having CT findings of bilateral hydronephrosis, but I had a test, and my kidneys did well. My kidney numbers are fine too. I can't help but think it may have more lobular stuff going on, but it's not showing up yet. I just switched to Xeloda at the end of September because I felt Ibrance and Letrozole weren't working. I went with my gut. I've only taken three doses so far, 7/7 schedule.
I hope it works well for you.
I do have a question for others. I notice when I'm on the medication that if I get upset or flustered, I feel more overwhelmed and not able to handle things as I normally would be able to. I get more frustrated at my husband. Does this happen to anyone else?
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hi Kbl
I have bilateral hydronephrosis too. The radiologist thinks the cancer is wrapping around my ureters. My kidney function tests are normal just my creatinine is a little elevated. I did not have a biopsy it was diagnosed by the way it was presenting. Also I’ve been way more anxious lately but it started when I was on Ibrance I’m hoping it eases up now that I’m on Xeloda but part of it is a by product of having stage 4 cancer for 8 1/2 years. I’m sure my husband hopes so too!
Kristin
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Ugh. I’m not having any symptoms, so hopefully the Xeloda knocks it back if it’s happening.
I had my tumor markers after taking it two weeks. My tumor markers have been pretty accurate. My CEA went from 8.5 to 5.8. I’ve only been under 6.0 one other time in over two years. My 27-29 went from 374 to 314.
I hope it really helps you. Please post how you’re doing as time goes on.
We are very similar in length of time. I’m 8 years and two months de novo. May we both live a lot longer. Hugs.
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Lizo1-thanks for sharing about your wife's hair. I think I'm going to take my chances and not do cold cappping. My hair is not as important to me as it once was now that I'm retired and convenience and time are important.
KBL- Taxol was chosen because it's the most effective drug out there that I haven't tried. They would have chosen Taxol first but because of Covid we decided a pill would be better, less time spent in the hospital. I was on Xeloda for 18 months but noticed my markers going up in July, I finally found the source of my increased markers after several normal PET's. The PET/CT- FDG showed uptake in the pelvic free fluid. New place (peritoneum), new meds, back to research. I had Taxatere over 20 years ago and have no idea of the dosage. Then it was every 3 weeks for 12 weeks. Right now Kaiser is recommending once a week, 80mg/m2 iv weekly, for now. I will be taking it until it stops working since I am MBC. Very different schedule from newly diagnosed who go for 12 weeks then stop. More hand/foot syndrome.
Partyoffive- I too have lobular cancer that has gone to my peritoneum. We are a rare bunch, difficult to it find on a scan and limited information on special treatments other than regular cancer drugs BUT there is a surgery out there, a scary one, but it seems to be more mainstream now, (not sure it is for BC still investigating). Here are two articles I found that gave me insight into the disease-one for Breast cancer and one for Peritoneal mets in general (from other cancers too).
Peritoneal Metastases from Breast Cancer: A Scoping Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6783220/
Peritoneal Metastasis- Continuing Education Activity https://www.ncbi.nlm.nih.gov/books/NBK541114/
I will put these links up on a different thread, Lobular Sucks!, and ILC (Lobular) unusual Mets. Don't know if you have visited them. HUGS!
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NinaCA, I hope this treatment works for you. I’m sorry you have progressed. I have a feeling my metastasis is in places they can’t see as well, which is why I chose to switch without conclusive proof. I will definitely read the links you’ve posted. I’d like it if you keep me posted on how it’s working for you.
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Ninaca-thank you for the post I’ve been reading into the surgery and have it on the back burner. Last scan was looking a little better so I will keep that info for down the road. We all know how quickly things can change.
Kbl-yes our time line is very similar and may we both have many more years. Today I’m supposed to go wedding dress shopping with my daughter and have felt great all week. I wake up today to get ready for our. 3 hr drive to New York and my pupil is blown in my left eye. It’s happened before so I’m not completely freaked out but it’s hard to see and usually means a nasty headache is on its way. The joys of cancer! Hope you all have a great weekemd
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So sorry Nina! I pray that Taxol does a great job. Please check in here once in a while, so we know how you are doing.
Karen-Yay for you!
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Two responses to various things:
1. HIPEC (referenced in Nina's links) is used in a number of advanced cancers. From my own research over the past few years, it seems that it may be increasing in usage. They can even do it laparoscopically now which, if possible, makes it a whole lot easier of a procedure to take.
2. KBL, you asked about mood changes, etc. I am a lot more weepy on xeloda than I've been on other drugs. Maybe I'm snapping at my hubby more? But definitely more weepy.
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BevJen - I have had no emotional changes at all with Xeloda, but I am still fairly new to the treatment - just started my 4th cycle. When did the mood change start?
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vbishop,
I'm actually fairly new to xeloda, too -- they've had me on it, and they've had me off of it. This week I'm on, and this week I am noticing some mood changes. In total, I'm probably about 4 -5 weeks on.
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PartyofFive, I’m so sorry about your eye. I would definitely have freaked out, and it’s awful it’s happened more than once. I hope you were still able to enjoy wedding dress shopping. How exciting.
BevJen, I haven’t cried much, but, boy, can I let the F bomb go. I was better today, but probably because we had my grandson all day. At least I know I am yelling more and admit it. I just have to work to try and control it. Thank you for letting me know. I hope you can feel better and not be weepy
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KBL, I stressed quickly on X too and yelled at my DGD more too. I am much better now that I am off X. I do better in other ways too. I was on X for a year though so that is good.
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hmmm - I am on a low dose of wellbutrin that I started taking to help me with stress at work. Maybe that is helping here. I will start paying more attention to moods during my on and off weeks.
Hearing everyone's experiences has helped a lots. Thanks ladies!
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Good morning, all. I have been on X for 33 months with stability, except for a lymph node which was zapped with SBRT a year or so ago. My next regular every 3-mo PET scan is next week. On a side note, I have a bit different way of coping with my Grade II hand and foot than most do.
It hadn't occurred to me that X might be affecting my moods until I read the recent postings, but perhaps it is. Serious anger lurks just below the surface, and my husband has noted that I can go from "okay" to enraged over something I might have handled much more moderately in the past. I credited that to general anger over lack of control due to MBC.
I'm not weepy typically, but I am easily overwhelmed now. I was a very successful Realtor for 44 years, juggling masses of critical details and problems without noticeable problems. Maybe it IS the X...I don't know. An interesting point though....thanks for pointing that possibility out.
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IntoLight, thank you for letting me know. I don’t feel so alone, although I wouldn’t wish this on anyone.
JoynerL, you’ve described it to a tee. I can be fine and then something sets me off, and I throw a little fit. My husband has never been one who knows what to do when I get mad, so he giggles. He’s not doing it to be mean, it’s his way of coping, I think. That then sets me off a little more. Luckily, it’s not every minute of every day. I’ve only been on it for three weeks so far. Maybe my body is trying to adjust. I’m glad you let me know as well. Thank you.
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Hi All and welcome to the newbies even if this is the last place you want to be. Re moods I think the whole MBC thing is a total roller coaster for us all and I am definitely more short tempered and what we in Scotland call “Crabbit” than before. That’s hard for everyone around me. I’m not sure it’s the Xeloda….I think it’s the stressful situation we are in.
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Hi, Karen. I was on Ibrance and Letrozole before Xeloda for over two years. I am noticing this little change since I started Xeloda. I’m also on Faslodex. I’m not sure if it could be that. I agree that having this crap disease in the first place makes it that much harder.
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In spite of my 19 1/2 years of chemo, I am okay. I am divorced and live alone. So I guess that helps. What does make me crazy are the anti-vaxxers and anti-maskers.
So I guess that I will hibernate forever and stay out of trouble.
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I noticed early on that I was sadder and didn’t connect it to Xeloda until someone else mentioned it I don’t have much sadness usually
I feel more weepy and I can’t multitask as much. I feel like I just want to be alone- if I visit with someone I need major downtime.
I thought some of it might be that waiting for the other shoe to drop over the last 10 years has been exhausting. Even after a good lab or scan- something comes along within days (re cancer) to ruin it- so I am always worried. I know everyone worries about dying- but, it feels different for us. It’s hard to plan
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Hi everyone, just popping in to say Aquaphor and gel lined heel socks damn near fixed my recent development of painful cracked heels. Not sure if they were due to Xeloda or just happened
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Kiko---I agree! I have used Aquaphor and silicone socks for over 3 1/2 years of Xeloda. Since the gel lined socks get so stinky, I prefer the cheap silicone ones on eBay.
Stinky no more.....
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Are Dearfoams the general recommendation for slippers in this group? Since colder weather’s arrived, I’d like to have something cushy for my feet around the house.
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