All about Xeloda
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deanders-try not to worry. My first several months weren't too bad at all. At the first sign of red feet and hands, my onc changed me from 14/7 to 7/7.
The H/F is tolerable. I was Her2+++, but my chest node recurrence changed to Her2-Somatic. There are tons of chemos available for us, so don't worry.
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So I got my Xeloda today in the mail and counseled with the pharmacist. I'm going to call the nurse tomorrow and ask if I should just jump right in the pool and get started. Sadly though, I had a major meltdown this afternoon with the stark reality of it all. Once I start those pills, this never ending journey begins. I will officially be fighting for my life every day for the rest of my life. And that terrifies me. I wonder if there will be days that are normal, when I forget that I have cancer? I wonder if it will always be a dark cloud chasing me to the grave? I wonder if my family will watch me wither away to nothing? I wonder who will miss me? I wonder what I will miss? I so desperately want to wake up and say "THAT dream was HORRIBLE!" and realize that it was just the ongoing fear of recurrence. But I have been waiting for nearly a month to wake up from this nightmare and still every day - the first thing to come to my mind is "I have cancer - I don't want to die". Then I spend massive amounts of time waffling between doing everything I can to beat this and giving up. I just hope that I have good luck with the Xeloda - please wish me well.
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Hello, deanders. I'm sending you a huge basket of good wishes and good luck. Thank you for sharing so honestly. We get it. Just do today. Are you ok right now? Yes. Tomorrow, the same. Eat a good meal that is not challenging on the tummy, take your Xeloda pills, then go do something that makes you happy. If you do run into any trouble, contact your onc or nurse. But expect to be fine.
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deanders, you will find a new normal. Yes, it will be different, but you sound like a fighter and that will serve you well. I have found that my family supports me by just being normal themselves. I know they think about me especially when my energy level is low, but that is ok. I am happy that they love me. My cloud isn't all light, but it is not dark either. I still live; cook dinner, visit my kids and grandkids, take vacations, etc. Currently I am the home e-parent for my granddaughter who just started kindergarten--her mom is in nursing school. I figure that is what God asks of me right now and I am glad to do it. I am determined to live the most I can and enjoy every moment I can. I have bad, sad, and mad days, but I get over them. I know I am blessed and I plan to live wear out the stuffing of those blessings!
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deanders, Xeloda is tolerable. I had H/F, but only to my feet, my 2nd cycle, but it was manageable. Now, I'm on a lower dose, but in this 3rd cycle, so far so good. I'm not anticipating any trouble. You can do this!
Hey all, one thing I am now noticing is that I'm getting little dark spots on the insides of a couple fingers and both my palms. Anyone else experience this? Not sure if it's the Xeloda or Tukysa, but just started in the last couple days.
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Bliss,
I developed dark circles around the tips of some of my fingers and toes. This is much better than the black knuckles I developed during AC. So far, the dark circles haven’t grown. They developed early and new ones haven’t formed. They’re not that noticeable and no skin peeling or pain in the area, so it doesn’t bother me
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thanks denny 123 , I love chips but have been restricting myself to eating them at the weekend, maybe I can prescribe myself a daily allowance, then keep up the liquid intake required with xeloda.
deanders, I understand your confusion. I try and live the best life I can in the short term, harder in this time of covid, no one knows what is planned for them and stressing about 'what if' is so damaging for our mental health. It is hard, but nurture yourself and try and plan some activities that give you pleasure to help you temporarily forget your situation. Also give yourself a rest from dr google, any concerns contact your oncology team immediately, they know you and can give you the advice you specifically need. I wish you soon find some inner calm and xeloda treats you well and gives you hope.
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NorCalS, thanks. Same here no peeling or other symptoms. At first I thought I had some kind of stain that wouldn't wash off. When putting cream on my feet last night, I saw one spot on each foot bottom. If it doesn't increase too much and stays on my feet and hands, I won't be too bothered.0
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Bliss58-the spots are normal and probably from Xeloda.
Deanders-I had a chest node recurrence 10 years ago. They grew slowly and Kadcyla kept pretty good control of them. When my BC properties changed, Kadcyla quit working so I went on a clinical trial of Poziotinib which cleared them out in 8 days.
I have now been NED for over 2 1/2 years.
So a recurrence isn't the end of the world, and can be treated.
Since I have been fighting this for almost 19 years, it is just a way of life for me. It always will be a worry, but s lot of days I hardly think about it.
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Denny123, thanks for your comment about the spots. Funny you mention Poziotinib. I just came across a study about it today. I had never heard of it. That's great it worked so quickly for you.0
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Bliss58-Poziotinib was super-nasty. That is why I only lasted for 8 days on it. There were about 7 of us on the clinical trial, and the others were in Pittsburgh at a different chemo center.
I think most of them ended up in the hospital. I was told that I had the best results, though.
My onc told me that although Hillman Cancer Center in Pgh quit the trial, there was now another study where the ladies had to be admitted into the hospital to get the treatment (pills) and they were paid $1,100 !! No fair! LOL.
My side-effects were blisters all over my scalp and from my nose down to my chin. Hair loss. Severe thrush. I lost 15 pounds!! (but gained it back-darn).
But since it worked so well, I would do it again....
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All, just a quick note to say my PET/CT (taken Wednesday) looks good. The wording is... 'No definite foci of skeletal or hepatic metastatic disease are noted on the current study." Super happy that Xeloda is working so quickly. I am in the middle of my third cycle. Sigh... Haven't spoken with my onc yet, but she always lets me know ASAP the results. I don't have portal access to PETs until we speak.
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Oh, IntoLight....HOORAY for you and your great news!!
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IntoLight--Yay for you!
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IntoLight, posted on the other thread, but want to say again here, yay!! So glad Madame X worked for you so quickly!0
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Denny123, that sounds just awful what you and the others went through with Poziotinib plus then you got screwed on the $1,100! That's good at least it worked within 8 days!0
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Intolight, wow ,what a result after 3 rounds of madame x, long may she work for you.
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Unfortunately, after 10 months on Xeloda, which has now failed big time, I'll be starting weekly Taxol in two weeks after my washout period. I'm in my 5th year of treatment for MBC the last two years with liver mets. I've been through heavy-duty IV chemo before (AC in late 2015/early 2016), so this won't be my first rodeo (and hopefully not my last), but I believe that using a heavy-hitter right now is indicated because of aggressive progression. I'll provide more details about what kind of progression my scan yesterday showed later - the news is still percolating, but I will mention that my cancer has neuroendocrine elements which makes effective treatment ever more difficult.
I will miss being on Xeloda which was a very tolerable treatment for me. I hope you all have continued success on it!
I hope you all have a good holiday weekend. I'm a pretty chill and very realistic (but not negative) person who is more of an under-reactor than over, so I'm looking forward to spending the next couple of weeks reading some good books and having a few stiff gin and tonics!
Cheers!
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Kattysmith--I am so sorry that Xeloda didn't work for you. Prayers that you find a treatment that works for you!
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Kattysmith, very sorry to read Xeloda failed you. Hoping your next treatment knocks it back. Hugs.0
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Kattysmith, so sorry to hear of this progression but will be praying the next treatment works wonders.
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kattysmith, I hope you find the treatment that works for you .In the mean time enjoy those gin and tonics, wishing you well.
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Thanks, y'all!
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So I started taking Xeloda on Thursday - hoping I see results from it. So far no problems, which always makes me think it won't work. But I am trying really hard to be positive since this MBC journey is just starting for me. I am really having a hard time with the emotional piece of this. I am so stuck in my head with the thoughts of worry. I worry about quality of life, I worry about what I will miss out on, I worry about being sick and not being able to do things. I worry about money and how long I'll be able to work and how to pay for treatment when I can't work (my job = my medical). I worry about using my time wisely, which makes me worry about how much time I have. I worry that I will try treatment after treatment and nothing will help slow this down. I bring so much stress to myself and then worry that the stress will make my cancer worse. I worry that worry gave me this disease. I can't find any peace especially with knowing that triple negative is so hard to treat. I so desperately want to do treatment and be told that I am NED - and then I think that just won't be me. But there no reason it can't be. I was struggling with my purpose in life before I got cancer - was in the process of trying to figure out who I am after the kids got a little older and then I got BC and everything fell. And now I find out that it spread and my world went upside down. Add COVID world to that and it just gets that much harder. I am desperate for this to not be me, I want to wake up from this nightmare and get on with my plain boring normal life. How did you all get out of your dark thoughts? How did you guys cope and find fight in you? I could really use some help with perspective and hope.
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deanders, I think we have all probably been in the dark place you are now - I am going to die tomorrow or the next day , or after the next blood test or scan. No one wants to accept they are living with cancer, but we are here today and we're going to be here tomorrow . Try and focus and enjoy the here and now; whether that's time with family or doing a hobby, even time at work. However, much you worry it is not going to make you better. I have just started taking xeloda and am hoping this works, but my oncologist reassured me if this does not work for me there are other treatments we can try, please don't give in to the negative thoughts. I am sending you digital hug and hope you find peace of mind soon.
Have you spoken to your medical team about these desperate thoughts that are causing you so much fear? They might be able to recommend a counsellor or some medication that will help you through this initial period of grief, when naturally you are mourning the loss of your 'old' life .
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Deanders, I'm kind of a pragmatic person, so when I was diagnosed I wasn't freaked out, worried yes, but I asked where do we go from here? I trusted my team, so once I had a plan in place I felt more peace. Coming to BCO and finding hope everywhere here also helped put my life in perspective. I do mourn the person I used to be, but I celebrate what I can still do. I know TNBC is rough, but can respond well to chemo and there are more treatments ahead. After having one treatment fail I too go back and forth of will this Xeloda work? I think the best advice is take a deep breath and live each day. This cancer might take you one day, but know that today is not that day. Hugs.
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Deanders, there is hope. I read an article yesterday about honey bee venom was showing good results in treating triple negative bc in mice.
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deanders, all your concerns and worries are very valid. I, too, was in a freefall after the mbc diagnosis. It took me awhile to sift and sort through what I was feeling. I thought it was depression but no. It was anxiety. I think I even physically trembled during the day. I could literally not get off the sofa. I was consumed with fear.
Let me say this. I prayed. I meditated. I got out in nature. I tried reducing stress.
None of that helped. At all.
But when I finally sorted out that I had anxiety and not depression, I talked to my PCP's nurse practitioner and she worked with me to find the right anti-anxiety medicine. Some of these meds can make your anxiety worse, so it is important to find the right one. After a few misses, she finally prescribed Buspar. She said it would take a couple weeks to kick in. For me, it worked almost immediately. I can still remember the day I started taking the med, sitting on my living room sofa. The kitchen window was open and suddenly I said to my husband, “Wow, those birds are really chirping loudly!" I got up off the sofa and walked towards the kitchen and into the next phase of my life. I was finally getting relief from anxiety.
Before the anti anxiety meds, all I could hear was the sound of fear. The meds help take the edge off and I am able to live so much more fully. Still taking the med 9+ years later.
So my suggestion is talk with your doctor to see how medicine can help. I could not rise above the anxiety on my own. Turns out, I didn't have to.
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Anyone else struggle when you bend over? I can be doing fine, but when I bend to empty the dishwasher or pick up something from under the table, etc., I end up suddenly nauseous or feeling lightheaded, and it lingers awhile. My blood work is actually pretty good. Just wondering...
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