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All about Xeloda

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Comments

  • ninetwelve
    ninetwelve Member Posts: 328
    edited January 2021

    Welcome to the X crew, hray. I'm sorry to see your age at diagnosis. I see you're also new to this regimen. I hope it works well for you with very few or no side effects.

  • hray1993
    hray1993 Member Posts: 220
    edited January 2021

    thank you!! I feel like it might be giving me some insomnia... I can’t sleep at night for anything. Is anyone else having that problem? I’m on a low dose, 2000 mg a day, but I just can’t sleep at night for anything

  • denny123
    denny123 Member Posts: 1,528
    edited January 2021

    hray...welcome!


  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2021

    Welcome, hray. We'll have your back.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2021

    And Roll Tide.....:)

  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited January 2021

    Welcome, hray!

    I’m a Roll Tide girl, too!

    Xeloda doesn’t seem to affect my sleep. My sleep pattern tends to be: a night or two having trouble falling asleep, followed by several nights of really good rest, repeat. I don’t attribute any of that to Xeloda. I take a few other meds, Wellbutrin for depression, Buspar for anxiety, and a cholesterol med. Lately I’ve been taking the buspar, which is a very low dose, every other day and that seems to help me sleep better.

    I hope you can find the source of your insomnia. Best wishes to you.



  • intolight
    intolight Member Posts: 2,335
    edited January 2021

    Welcome Hray. I have sleep issues too but also had them on Ibrance so who knows.

    I had a Covid test again yesterday and it came back negative. My oncologist is confused as my whole family has tested positive and I feel awful. It could be something else, or just not showing up. We will revisit on Monday to see how I feel. Meanwhile, I am off Madame X to help me recover.

  • blmike
    blmike Member Posts: 195
    edited January 2021

    After about 4 month on Xeloda, we found out it's not working on my wife's cancer. The tumors in her lungs and liver both are continuing to grow. This after neither Ibrance nor Piqray worked. Apparently the next step is IV chemo. Sad Thanks for the support ladies and good luck on your journeys.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2021

    Oh, Mike, I'm so sorry to hear that neither worked for your wife. Please do stay on the string and keep us posted! Sending both of you hugs, support, and best wishes!

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited January 2021

    Mike, that’s hard news to hear. I do hope IV is doable and that your wife’s team consider using a portocath instead of rigging her up or using a Pik line.
    I’m also on the final shot at xeloda before IV, which I don’t start until next week. Ibrance / Letrozole failed after 28months and Faslodex didn’t work at all. The delay is because I spent 5 days last week in hospital with a chest drain in to drain off 3.5l of fluid from a pleural effusion followed by a pleurodesis. Still recovering as breathing not back to normal....it’ll take a while, but I should get back to something like normal and I have physio support which helps.

  • intolight
    intolight Member Posts: 2,335
    edited January 2021

    so sorry to hear this Mike. I will be praying the IV treatment works

  • elenas401
    elenas401 Member Posts: 170
    edited January 2021

    Mike: So sorry to hear that Xeloda didn't work for your wife. I too went on Faslodex after Ibrance and Letrozole didn't work. I too have had progression in my lung and liver. Are there no other options but IV chemo after Xeloda?

  • blmike
    blmike Member Posts: 195
    edited January 2021

    Thanks all.

    Karenfizedbo15 -- We've noticed that our paths have been eerily similar over the past 2 years. Best of luck with your IV. Sorry you're in the same boat we are.

    elanas401 -- It's not clear about other options. Both my wife and I were under the impression that our oncologist had other treatment options in her hip pocket if Xeloda didn't work so we're a little surprised at the recommendation going straight to IV chemo next. We're getting this info via e-mail, but will know more about her thinking when we meet with her oncologist on Wednesday (assuming we can get out after being snowed in!).

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2021

    Mike, have you gotten a second opinion at one of the larger facilities? You may have started at one, but I believe that second opinions are always prudent.

  • blmike
    blmike Member Posts: 195
    edited January 2021

    JoynerL -- Thanks. That's an excellent thought. No, we have not gotten a second opinion. I'll discuss that with my wife.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2021

    BLMike, you might have posted this earlier, but was a bx done on those liver mets in case hormonal characteristics have changed or a treatable mutation identified?

    I am looking at AA or a trial for FGFR1 amp when I progress.

    When initially diagnosed in 2016 and in visceral crisis, I was on AC for 3 months, then when stable, switched to targeted and antihormonal tx. Maybe that is your MO's thinking..even adding ablation in the mix.

    It is a process, please try not to be discouraged. Sending the two of you a hug.

    S

  • blmike
    blmike Member Posts: 195
    edited January 2021

    Thanks SandiBeach57. It is hard not to be discouraged. No, her liver mets never were biopsied because there really wasn't any doubt that they were cancer. We'll ask the question about potential changes in hormonal characteristics. Good point.

    It really isn't clear what our oncologist's thinking is here. We thought Polly had other options before heading to IV chemo so we were both a little taken aback when she wants to jump next to IV chemo. All of the communications over this has been via e-mail so we'll definitely know more of the plan when we meet with her oncologist on Wednesday.

  • denny123
    denny123 Member Posts: 1,528
    edited January 2021

    Sorry Mike. But don't be afraid of IV chemo since I have been on IV for 19 years.

    Actually, although I am on only 2,000 of X at 7/7, I have more SE's than I ever did on IV chemo. (Besides my clinical trial of Poziotinib).

    I think it is because with IV chemo, the effects are spread out for 3 weeks, rather than X, with which I have SE's daily.

    In 2004, my liver was filled with tumors and I really only had a year to live. I went on IV Gemzar & Herceptin and in 9 months, my liver was cleared. Herceptin has no SE's, and Gemzar was a breeze.

    Please keep in touch!

  • blmike
    blmike Member Posts: 195
    edited January 2021

    Oh Denny123 - You made our day! We know all cancer is different and everyone reacts to treatments a little differently, but it's so nice to hear such encouraging experience! Thanks so much.

  • denny123
    denny123 Member Posts: 1,528
    edited January 2021

    Thanks Mike! I speak the truth! The newer chemos are so much better than the standard A/C, which I don't see in your wife's history. And once again, I didn't have the sore hands and feet with that!

    And I have had my port for 19 years, which is a blessing.


  • hray1993
    hray1993 Member Posts: 220
    edited January 2021

    I was just informed that this is a stage 4 group for xeloda. I am not stage 4. I’m cancer free currently. The xeloda is to keep the cancer away. I’ll take it for a year but I didn’t realize this thread was for stage 4.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited January 2021

    Mike, I know your wife and I have def been following similar paths so you’re both in my thoughts. Just to clarify, it’s Xeloda that I start on this week... it’ll be IV if that fails. Scan in 3 months.

    Good to hear from others that a IV need not always be as hard as we can be led to believe.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2021

    I can see my PET results online, and though I meet with my MO tomorrow to "hear results", it all looks stable to me. Also, I sent the report to my RO (who directed the SBRT/stereotactic radiation of periclavicular node in November) and her response was:

    Just looked at the scan and I'm really pleased! The node now looks much smaller and the metabolic activity is significantly less (now actually normal, in fact). This indicates a very good response to treatment. Results after radiation take time, and lymph nodes often do not disappear entirely. The normal capsule of the node will usually remain even after the cancer cells are dead. Think of it like a skeleton after the body decays.

    I think it looks great!

    Whew...another 3-months' reprieve. Thank the Lord!

  • lizo1
    lizo1 Member Posts: 94
    edited February 2021

    Lynn - I haven't been on here in a little while and woke up this morning to your post! I'm so happy for your great report!! A great way to start the morning.

    Praise the Lord!

    Liz got the go ahead for her next cycle of Taxol yesterday, so we're off to the hospital for chemo this afternoon.

    Grant

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2021

    Thanks so much, Grant! How did Liz do on her first cycle of Taxol?

  • lizo1
    lizo1 Member Posts: 94
    edited February 2021

    Lynn - Today will be the start of her 4th cycle. Liz gets quite a bit of additional pain in her hip and leg for the first 4 days after treatment. She also gets some numbness in her feet for the same time period. Overall it's been manageable but definitely tougher than Xeloda.

    Grant.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2021

    Ugh....I so wish that it were easier! Hugs from me to you both!

    --Lynn

  • intolight
    intolight Member Posts: 2,335
    edited February 2021

    Lynn, so happy to read this news. Yay!

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited February 2021

    great news Lynne!

  • Andi67
    Andi67 Member Posts: 314
    edited February 2021

    Great news, Lynn!

    I've only been on Xeloda for two weeks - this is my week off - and I do notice a difference in side effects....I feel so much better. My understanding from my MO is that if X doesn't work, my next step will also be IV Chemo. I did just have the Foundation One testing on Monday - the blood test, although I know it takes a few weeks to come back. I'm taking this in combo with Tukaysa daily and Herceptin once every three weeks.

    For those of you who this is working for, do you remember how quickly you noticed a change in symptoms, or in your TM's going down? Was it quickly, or did it take a while? I am anxious. My cancer was previously in my liver and bones but then 7 years of NED with Herceptin, but this time it's in the lining around my lungs, making it hard for me to breathe without oxygen. I think I am impatient and anxious for improvement.

    Karen - I've also had a pleurodesis - twice, in fact. That is a hard surgery! I hope you are healing quickly.

    This is a great thread - so much good information!

    XO

    Andi

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