Several of you ladies on here queried why I wasn’t offered Xeloda as my first chemo treatment...after much thought I texted my oncologist and she’s letting me do this...if it doesn’t work then I can go on FEC combination....I just have to have the blood test to check I’ve not got the enzyme deficiency...all going well then I won’t be struggling with side effects over Christmas ...or be bald
I’ve been feeling really poorly over the last week and when nurse took my temperature it was 38.4....So now on antibiotics but at least I know why I’ve felt so awful
Just goes to show that asking questions and Querying things can be useful
Barb xx
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I'm glad to hear that your questions were taken seriously and you are now on antibiotics. I hope you start to feel better soon. It's also good to know that your oncologist is letting you try xeloda first rather than intravenous chemotherapy. We have to advocate for ourselves and make sure our oncologists are aware of how we are feeling.
I’m glad Xeloda is being considered for you ...did your onc say why it wasn’t previously ? Hoping it all goes well for you , and maybe you won’t need the wig after all ?! Much love x
Good to hear that Xeloda will be prescribed! Some oncologists in the US start their patients on a lower Xeloda dose, which studies show to be as effective as the Maximum Tolerated Dose (standard dose) with fewer side effects. Please feel free to discuss dosage options with your doctor and share the studies below if you wish!
An analysis of dose modification and outcomes from four Phase II capecitabine monotherapy trials, one Phase III capecitabine/docetaxel combination trial, and an analysis of consecutive MBC patients who received capecitabine outside of a clinical trial concluded that reduced capecitabine doses were associated with a lower incidence of treatment-related adverse events, specifically hand-foot syndrome, diarrhea, and stomatitis. Furthermore, time to disease progression and overall survival were similar, or even slightly longer, among patients who received lower vs. full-dose capecitabine in all of the studies reviewed. Together, these data support the practice of dose-reducing capecitabine, including the possibility of starting at a lower dose (<1250 mg/m 2 twice daily), to reduce the incidence of adverse events without compromising efficacy.
At the University of Southern California (USC) hospitals, capecitabine is routinely prescribed at dosages as low as 600 mg/m2 twice daily, with a majority of MBC patients receiving a flat dosage (not adjusted for BSA) of 1000 mg twice daily. In a review of 84 patients who received a median capecitabine dosage of 565 mg/m2 twice daily, the median PFS among the 62 patients with measurable disease was 4.1 months), which was similar to the median PFS values (4.4 months; 4.2 months) for single agent capecitabine reported in the two major trials with similar eligibility criteria. Furthermore, only 2 patients (2.4%) discontinued capecitabine due to toxicity, supporting our hypothesis that starting treatment at low dosages minimizes side effects while preserving efficacy. gotoper.com/publications/aj...
Thanks for providing scientific studies to support the hypothesis: "starting treatments at low dosages minimizes side effects while preserving efficacy". The more we patients start to request input into prescription decisions, the more physicians will learn to listen. This old-fashioned notion that "the doctor knows best" is nonsense when the subject is our individual bodies.
Hazelgreen, thanks for your reply! The USC study cited had specifically referred to Xeloda. I belong to the Patient-Centered Dosing Initiative which encourages patients to assess various dosing options with their doctors based upon the patient's unique physical, circumstantial and psychological factors. In some cases, the highest dosage may be best for a specific patient, whereas in other cases a lower dose may be optimal. Having the conversation can prove illuminating on both sides!
Now what is needed are research studies which assess which patient characteristics best lead to the best match (and why) with regard to dosing options. Otherwise, it seems to me that it is all about tolerance for side effects, and seeing whether lower doses are equally effective (as with capecitabine/ Xeloda) on average. In psychology, we talk about "n=1" studies. It seems to me that physicians could learn much from that approach.
In any case, I am glad to know that the Patient-Centered Dosing Initiative exists. I've now reviewed its survey results. Thanks for making those available! I'll look forward to learning more about the PCDI.
Absolutely! The Patient-Centered Dosing Initiative has identified 10 patient-centric attributes that we're hoping patients and their physicians will discuss. We're also ever-searching for studies regarding dosage efficacy. The patient-centered attributes and studies we've identified thus far are on our website at TheRightDose.org
This an excellent insight. Just the notion of changing meds can psychologically beat on down. That can have ripple effects on overall health. Thank you for sharing.
Hi Barb. Glad to know that you are on Xeloda. That’s my medication at the moment but I am on a very low dose. They call it metronomic dosing. I’m only on 500 mg twice a day but continuous (no week off). I don’t know if it’s working yet because I haven’t had a scan or blood tests after starting Xeloda. I should be having blood tests this November as well as an MRI. As to side effects, I am blessed to not have any (maybe because of the low dose) although I did experience nausea on the 4th day but none thereafter.
I hope this works for you and hope it’s working for me and the other ladies who just started it too. You can also mention to your oncologist that there is another oral chemo Vinorelbine (Navelbine).
Hope the antibiotics kick in so you feel better soon!
Barb, Good to hear that you get to try Xeloda. I had a rough start on it...vomiting after every dose, but with a slightly decreased dose I am doing much better. And the good news, after only 3 rounds of Xelada, my cancer markers are falling! I hope you have as good a reaction. I have one finger that wants to peel and my feet hurt for the last 4 days of medication. I didn’t consider that to be too bad but they said that if it continued they would reduce my dose by one more pill. Obviously Xeloda is like Ibrance in that they start you on the highest dose even though lower ones work. So don’t be afraid to complain about any side affects. I’ve got my fingers crossed for you.
I was on a high dose 3 pills am and 3 pills pm for 2 weeks. My hands and feet peeled. Used Udder cream and helped a lot. After 2 weeks I was off it for a while due to side effects. Was in the hospital for dehydration for 6 days in June.
I am now on one week on and one week off 2 pills am and 2 pills in the pm.
Feeling good. See the oncologist every 2 weeks for blood tests and my cancer numbers have fallen each time.
I also take medical marijuana which is legal in New York. I had to ask for a special doctor to prescribe it, and go to a marijuana dispensary to pick up the meds.
Good luck on Xeloda.
I also become dehydrated. Coconut water is good for this, lots of potassium. Also orange juice and V8 or tomato juice.
I just started Xeloda too, will start 3rd round in 2 days. I don't have nausea or diarrhea, my fingers are a bit sensitive, but about 70 % of my hair has fallen out. What dose are you on?
I’m taking 1500 mgs morning and the same in the evening. I lost hair when I started on Ibrance two years ago but not any on Xeloda. My fingers are sensitive as are my feet..they feel like I am walking on rocks for about 4 days. My nurse oncologist said if that continued they would probably decrease my dosage by one total pill. I said it wasn’t really that bad but she said that the result of me not walking much on those days was a decrease in stamina and if that continued over time I would get quite a bit weaker and that was definitely not their goal.
I am sorry you are feeling so poorly Barb and hope the antibiotics do the trick for you. I was on Xeloda for over 18 months and after fiddling with the dosage, settled down quite nicely with it. We all need to have the courage to ask questions, do our own research and ask more questions - well done! Wishing you all the best.
Really pleased that you should now get prescribed Xeloda. I’ve heard of several ladies doing very well on it for a long time. It’s certainly worth a try before any harsher chemo.
I certainly agree, the info I’ve gained from the lovely ladies on this site and in particular, Bestbird’s book “The insiders guide to Metastatic Breast Cancer” is priceless.
They have made me feel better already and my temperature normal this morning...I’m a great believer in power of the mind because IV been so I’ll the last few days that I’m sure the chemo plan has lifted away some of my fears...who knows?... I sound a bit bonkers here!!
I was so surprised when I walked into the consultation room as she said straight away that it could be a good plan to try the pills first...let’s hope I’m suitable for it...getting enzyme test soon
Interesting about he enzyme test I wasn’t offered one but it’s clearly working as my tumour markers went from 219 to 34 this week after just 4 cycles of 2 weeks x
I've just started xeloda that last few weeks. They immediately had to lower my dose. I'm now 2 pills am and two pills pm, one week on and one week off. It's my last resort and I really don't want to go to iv chemo. I hope its ok with the women on this site but I pray for you all every day. The Oncologist I have now is the first one to ever post test results. I received them this morning. I'm a bit worried. The last 3 months my Alkaline phosphates (ALP) has gone up every month. I had to look up to see what it was. I'm now a bit worried. I speak with the Dr tomorrow.
I don’t have any knowledge of ALP...your oncologist will put you in the picture...it’s the not knowing that is the worst aspect of this disease...I’m struggling with the not knowing if my vision will improve so I know exactly what you’re feeling
Great news Barb! I sure hope that this will provide positive results for you. And that you are feeling better and can enjoy the Christmas holidays. Take Care 🤗
Love this news...our oncologists are dealing with informed patients, based on our shared knowledge pool. I know it drives me to bring smart questions to my appointments! May this work well for you!
Strange as it may seem I feel better today...my temperature normal this morning and I’ve had some snacks...makes you wonder if the mind/emotions play a part?
So happy for you Barb. Hope you feel better. Thank you for posting. Just another lesson that we need to advocate for ourselves. Glad your onc agreed with your request to try Xeloda.
Prayers for much success with Xeloda! Hope that it also proves helpful with your vision issues. You are in the thoughts and prayers of many, including me!
Yes, it's so hard to accept that eventually, as this disease progresses, all of us are on this same nightmare roller coaster in our attempts to find the next best treatment. I just started my second line of treatment, Faslodex, following 34 months on Letrozole/Ibrance. It's so heart wrenching to hear the words, "some progression." Hopes are dashed, and then we move on. You are in my daily prayers and in my heart.
So glad you are going on Xeloda. It has been mentioned to me as a possibility after Ibrance fails. I am wishing you the very best results with it. 🤞🤞🤞.
I just started Xeloda at 1500 twice a day a week ago. At that time I couldn’t climb the stairs to my second floor without resting 3 times....now I can do it in one fell swoop! I’m very impressed, and relieved, because being that short of breath is very stressful and oppressive. Now I’m off for a week....I hope it keeps working!!! But so far I am very pleased....I hope you’ll be feeling this way in a week, too! Go, us!
This forum is a real blessing....thanks to you all.
That’s brilliant news ask her for the stomachache pain drug (met something) to go with it for the beginning and see if she is willing to give you Celebrex to go with it as it minimises the side effects. Mine said she wasn’t allowed to give it to me but if you are private she probably will. So pleased you are giving it a go xxx
I, too, have just started the Xeloda at 1000 mg twice a day-one week on-one week off. So far none of that hand/foot syndrome or any other side effects. I hope you have the same experience with good outcomes.
I am anxiously awaiting the results from my blood tests on Nov 3 with the results on Nov 4. It will be a very tense day since it is the same day my father passed away 6 years ago.
Wishing you the best and be sure to ask for options if there are side effects.
I have just had my first scans and everything is shrinking. My liver met went from 2cm to 0.8 so very happy at the moment. I am also doing mistletoe injections and hyperbaric oxygen, infra red sauna plus a ton of supplements so I think it’s a combination of it all.
I'm glad you're feeling better, be it down to antibiotics, state of mind, or a bit of both. Wishing you all the best with Xeloda. Good for you for self-advocating. This group is the best! 💪
So glad to hear you can try xeloda first!! Its great we have this site to talk to others and discuss our options . Hopefully it keeps our oncologists on there toes knowing we are Knowledgeable about the treatment options available to us. Take Care Barb keeping you in my thoughts!
This is seven days after your posting that I am sending you good wishes and prayers. My heart went out to you when I read your worry over Christmas. I am choked up over the thought that you may, ".... be struggling with side effects over Christmas...". This is such a difficult time and to have that worry is really so hard on you. I hope that the antibiotics worked and that you are back to your lovely self. I don't know what you look like but have a minds' eye picture of a really perky one.
Forget about the baldness! It gives you all sorts of opportunities for fashion statements. That's that old adage which makes me cringe sometimes, in the wrong hands, making lemonade out of lemons. But we all try to do that all the time. That may be what this forum is all about; making lemonade out of lemons.
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