All about Xeloda
Comments
-
Txlmom, I am sorry you are struggling and am praying for smoother waters ahead for you.
I just walked 1.25 miles on the boardwalk--a first for me in a long, long time. I know some of you walk much further daily, but I figure tomorrow starts my week off and the end of my Xeloda run so my feet should heal if I have problems. Sometimes you just gotta do it! I have been on Madame X for 10 months and am a little scared of the next tx since this one is suddenly faltering and my pain is increasing. May 20 marks the five-year point for me. I will know more after an MRI and CT Scan this week. Those of you who have journeyed on more than five years are my heroes.0 -
IntoLight, I'm sorry that you're facing this uncertainty. Good luck with your scans, my dear-
0 -
Ugh-I read the report that those of us on antimetabolites will have 1/5 of the efficacy after both vaccines, as compared to normal people.
I will never be safe, I guess.
0 -
IntoLight, brilliant that you are out and moving at all. Pain doesn’t sound good, I do hope you’re finding a way of managing that? The feet are def a thing- I’m obsessing about managing them now as I need to be able to walk or go mad! All that moisturiser, dealing with the peeling and cooling them down....not to mention experimenting with shoes and socks is paying off a wee bit at a time though, so hang in there.
Denny, you’ve clearly found ways around all of the issues MBC brings so far, you’ll find your way around the Covid one too I’m sure.....I think we as stage 4 patients are all in a massive clinical trial for these vaccines...there isn’t enough data around yet to really be sure of efficacy.
On a positive note saw my MO today. She’s pretty happy that Xeloda is beginning to working for me, with healing shown. I also asked to see the pics from the CT scan so I have clue where my bone mets are and how pleural nodes doing. Although I’m quite familiar with looking at scans, she took the time to go through in detail to help me understand some of the more complex stuff they look for...I found that very helpful. Turns out the 2 mets to my rib and spine are tiny and the pleural mets reducing. Also my sternum showed a healing fracture at the very bottom end of it. I knew there was something wrong as didn’t feel the right shape, but had no pain at all from it apart from what we think is a nerve being pressed. Who knew you could fracture a bone and not have pain?! The Xgeva jabs should also help and I def have less SEs from that than I would likely have had from Zometa IV they say. One wee step at a time but thankful for good news for a change!
0 -
Karen, thank you for the response. I am looking forward to a little time off all meds until we make a decision on the next one. My feet should heal by then. I get an abdominal CT Scan tomorrow, them wait for the results. I see my onc on June 7th and my kids arrive for a week on the 9th so I am hoping to feel pretty good while they are here...other than the pain. I just hope taking one month off won't do much damage. Have to take the bad with the good.
0 -
Intothelight- I am sorry to hear about your possible progression and hope the new scans help explain things. I am glad your will have time with the family soon and am interested in your next medication plan.
I cross posted on the bone mets thread- I had a question about radiation. I just had a PET today that says I have progression in one hip- the SUV went from 3.5 to 5.5 in 4 months. Since it is only one bone I am wondering about radiation to that one spot and staying on the radiation. I haven't talked to my MO yet- I have an appointment of Friday. Any advice about the different thoughts on treatment of a single bone met? I don't have pain.
thanks
0 -
nkb, I had single liver met growing after a year on xeloda. I had SBRT to that met and stayed on xeloda.
0 -
Karen, it’s nice hearing you’re getting a good response with Xeloda!
I am cross posting this with the vaccine thread: it is good news for me. I got blood work today at Express Lab and the phlebotomist mentioned a nearby pharmacy that does antibody testing. I left the lab and drove straight to the pharmacy. Paid $25 for the test, a quick finger prick for blood which then goes on a strip thing. It shows I have the long term antibodies! The pharmacist was super nice and explained it can take up to 15 minutes for results to appear but mine showed almost immediately. I am quite happy; it is money well spent for the peace of mind!
0 -
Great news Divine. I know several of us are a bit concerned about how much of a response we will have to the vaccines.
IntoLight, I too am sorry to hear about the progression. I can understand you looking forward to a bit of a break but hope your MO comes up with a plan to get things back on track.
Nkb, I think zapping the little blighter is a good plan if that is the only area of progression. I haven't had a PET so don't know how sensitive they are. The only question I have is if that is, in fact, the extent of the progression. There have been folks on this board who have had a stray met pop up like Sandi and if you can get more time on your current treatment that would be great.
0 -
Yay MrsM!
I had a long talk with my specialty pharmacist today since I am on a break from Xeloda because of my bad toe infections.
Apparently, I have been doing things all wrong. My toes have been bad for a month and are better, but healing way too slowly. He said not to use Betadine and Bacitracin as often, unless I need to curtail an infection. (But they do look nasty at times.)
Tea Tree oil is also out. Ice socks are not good (and I did read in the instructions not to use them on open skin). Wrapping them in gauze to cushion them is not good.
He said that I should leave my feet open to air as much as possible, and just continue to use Aquaphor.
I don't know what I am going to do about the insane itching, though.
And as I indicated in an earlier post, instead of going back on Xeloda a few days after my second Pfizer shot, I am going to wait for a full 2 weeks to start it again. This is because antimetabolites, like Xeloda can lower the antibodies by 4/5 that normal people all attain from the vaccines.
0 -
Sadie, thank you for thinking of me. I had the CT scan of my abdomen this morning and now await the results. But I do have good news in that the MRI of my spine showed no evidence of metastatic disease...Praise the Lord! The pain I am having is from a non-cancerous hemangioma (a blood tumor). I will be able to discuss this with my oncologist in a couple of weeks to determine what I can do about it. Sometimes they go away on their own. Hopefully my abdomen is something else too and I can stay on Xeloda. I am feeling so much better now that I have the MRI results. I was shaking when I went in this morning. You would think I would be used to this by now!
Denny, I appreciate your post too. My poor feet are so dry but I will wear socks less often. Thanks!
0 -
Sadie- what options are there for zapping? my MO is pretty uncreative so I want to be somewhat prepared. I only get PETs - maybe due to bone mets or just what my MO does- I heard that Kaiser and Blue Cross are partial to PETs. When I have had a major progression, my TMs have shot up and they edged up a little and now are falling again. I know that they may no longer be reliable.
Intothelight- what a wonderful relief!! I am hoping you don't have to change...
Denny-glad you got some advice about your feet-
0 -
NkB, I too am with Kaiser and usually only get PETs. My onc ordered the MRI and CT when she thought the results showed progression and wanted more definition of the issue so she could do a biopsy. I looked it up and CT scans provide clear images of bones and can detect abnormalities in soft tissues; PET scans provide images of biological processes within the body. Think of it as CT scans show the structures, while PET scans show how the organs and tissues within the structures work. I was told PET scans are more reliable for showing cancer.
0 -
Nkb - I have only had radiation to treat pain but understand it has the same effect, killing the cells. Given it's one small area just standard radiation should to it.
IntoLight, good news on the spine! On the PET, I think it works best when it is a more rapidly dividing cancer. My MO doesn't tend to use PET. Part of this is likely due to the fact that it was less accessible here for a long time. However, in my case, with slower growing cancer, I have often doubted that it would be as effective as CT. Hard to know at this point...
0 -
Did anyone experience any side effect during the first few days or the first week after staring the first cycle?0
-
dutch-yes. Typically the week off is worse than the week on.
Into...I get PETs when I have active tumors to measure the SUV scores and size. If I have no active tumors, I get CT scans.
0 -
Denny, I have a post op appointment 1.5 hours from my home. It would be day 4 of my very first cycle. I am trying to figure out if this will be a problem.
0 -
Dutchiris it shouldn’t be a problem unless you get nausea (but I don’t think many do). You might feel burning and tingling in the feet and hands but it shouldn’t stop you from doing stuff. As Denny said typically the week off is the worst
0 -
Hi Dutchiris, I don’t think it will be an issue. I have never had side effects that stopped me from doing anything. The only issue I need to watch like a hawk is HFS. No stylish shoes for me at this point! I made the mistake of wearing my favourite boots to my hair appointment and one block in thought oh, oh. I knew that I would end up with blisters in a heartbeat so bailed on the additional errands I had planned..
0 -
Dutch...If you have diarrhea or extreme nausea, it would be. It depends on your dosage. I don't have either of those, but my HFS got worse...for about the first year.
Now that I have been on X for over 3 years, nothing is predictable.
0 -
Yes, diarrhea is what worries me the most for the trip.
0 -
Dutch, I had no side effects during the first week of treatment. It was cumulative and thus increased as I got into the regularity of the treatment.
0 -
Thank JoynerL. I was hoping I would be ok. It's possibly my last appointment at that facility. Otherwise all my appointments and scans will be only a few miles from home.
0 -
Boy Joyner, cumulative is right! My hat goes off for those of you who have been on Xeloda long term. It keeps hitting me harder with each cycle and I’m only just finishing #5. Of course, just starting my off week which is the hardest...
0 -
Just talked to my MO about the progression in my hip- she said it was teeny and she thought we should zap it- I am so glad that it was her advice as well. She said that since the rest of my skeleton was quiet that it was probably a bad clone of cells. so feeling more upbeat.
we also talked about vaccine efficacy and tests and she told me that most of this stuff is just unknown and being studied and when something is known they will act on it- the CDC will make a recommendation. she did say that Xeloda does not affect the B and T cell immunity and in general is less harsh on the immune system- so that was happy news.
Happy Friday-
0 -
Nkb, glad to hear all the hip progression may need is a zap. Thanks for letting us know about your oncologist’s take on vaccine efficacy and Xeloda.
0 -
Nkb- a little zap sounds great!
0 -
hi everyone, I’m starting my Xeloda tonight. I’m feeling much better physically and emotionally. Thank you for the support. I’m going to try to be more active on this thread than I have been on others. Wishing everyone a good day.
0 -
Hello txmom. Im new here but I guess I can welcome you here. I'm on day four of my first cycle.
0 -
txmom..good luck! We are here for you!
0
