All about Xeloda
Comments
-
Hi Sandra @girlsptz thanks for checking in on my oncologist switch. I just got it straightened out yesterday. I did it on my own and went around the patient relations. They had never put in an order to get me switched over from one to the other. So next week, I have my first oncology visit with DO. No blood work yet and no scheduled bone scan, which has me a little nervous, but I’m sure she will get that ordered and taken care of. So far so good on the 2600 is good news. I hope that works out and you continue with little to no side effects. At least remaining manageable. Glad you’re getting your bike rides also! I am walking more now on my treadmill, but as soon as it cools off a little more, I think I will be able to get back outside. But as I’ve mentioned, I don’t need to fall down anymore! Wishing you the best on your scans on the 26th and that you can remain on Xeloda. Please keep us posted. Marcia
1 -
Here is the trial showing that methylcobalamin reduced grade 2 hand-foot syndrome problems by half:
https://www.bmj.com/content/390/bmj-2025-084290
Methylcobalamin is sold over the counter.
@girlsptz, what dose of Xeloda are you taking, and how much methylcobalamin. did your MO suggest it to avoid neuropathy, or for Xeloda specifically?
1 -
I have been researching the trial that was mentioned regarding the use of methylcobalamin (form of vitamin B12) and it's effect on HFS. I will link it below.
A few things to know is that typically there are 2 main forms of vitamin B12 supplements that we see on the market. Usually you will see the cyanocobalamin form added to multivitamins and cheaper forms as well as food fortification but methylcobalamin is also readily available. The first form mentioned (cyanocobalamin) is synthetic whereas methylcobalamin is a naturally occurring, biologically active form that does not require conversion. It is often chosen to support nervous system and brain health.
Methylcobalamin B12 supplements are available OTC and I've purchased mine from Amazon. You just have to carefully read the labels to make sure you are getting the right form. They are inexpensive.
Of note to those that might get vitamin B12 injections they are using either the cyanocobalamin or hydroxocobalamin form because it stays in the body longer.
All very interesting and I thank cure-ious for posting this on the thread.
Sandra
1 -
Thanks so much for the clarification of your dose. I'm on the 2600 mg dose as well as of this week. Next week I'll be off and then another week at the 2600 mg dose. Following that I will have my PET scan to see if it is working. I started the third week of July but only at the 1600 mg dose because I have the partial deficiency of the enzyme that can cause increased toxicity because it doesn't breakdown the Xeloda in your bloodstream as it should. So even though I have been on Xeloda for 3 months when I get my scan my dose has been slowly increasing up with every month cycle.
I have read that as you say what we need to be cognizant of is the fact that the effects of this drug are cumulative so that definitely fits for you with the issues developing at the 8 month cycle. I think I am reluctant to go up beyond the 2600 mg dose but using the ASCO 2023 research on the 7/7 schedule for MBC it was based on taking the 3000 mg dose daily so if my PET is showing improvement then I may have to increase myself up to the 3000 mg daily dose. My oncologist is onboard with whatever I want to do so that won't be an issue. Like many of us I am trying to stay away from infusion chemotherapy and Xeloda is my last oral option. Decisions, decisions? I hope you get good results from your scans. Sending you positive vibes. Take care. Sandra
0 -
We both posted the trial link at the same time lol. Anyway I was intrigued after your post so sorry I jumped ahead and posted as well.
Regardless the dose that I take is 1000 mcg of Methylcobalamin and as I mentioned I've been on that since May of 2018 when I was diagnosed. Originally my oncologist's purpose to start me on this is because it helps with the proper development of red blood cells in the body which she feels is vitally important with cancer patients. She also mentioned that literature has shown it to help prevent neuropathy and now recently since I started Xeloda in the third week of July she brought forward the topic that it may help lessen the effects and development of HFS.
My dosage of Xeloda as of this week is 2600 mg. I just responded to threetree above that I started on a lower dose than normal due to my lab test showing the DPD enzyme partial deficiency. It's definitely always a learning game and alot of researching for me because that's what I have always done. Onward we all go. Sandra
0 -
Thank you so much, Sandra! ❤️ My oncologist finally agreed to let me try the 7/7 schedule! She initially wanted to reduce my dose from 2000 to 1500 mg, but I told her I really didn’t want to lower it because I’m worried about reducing the dose. So she agreed to try 7/7 first before lowering it. If it works, great! If not, we’ll have to consider reducing it. I’m really hoping the 7/7 schedule will make a difference with the side effects while allowing me to stay on my current dose.
I’m so glad you’re doing well on 2600 mg so far! I’ll be keeping my fingers crossed that your PET scan shows Xeloda is working. I completely understand what you mean about knowing the facts as a medical professional versus experiencing it yourself. It’s a whole different feeling when it’s your own health and future at stake.
I’m glad you’re getting out and enjoying your bike rides while the weather lasts! Sending you lots of good wishes for your upcoming scan. ❤️
Oh BTW my 2 scans are scheduled for the first week of November. Almost the same time as yours.
0 -
I’m so glad you’re feeling better! My GI doctor prescribed Bentyl for the intestinal spasms, along with Citrucel, which has helped.
Good news! My oncologist finally agreed to let me try the 7/7 schedule. She initially wanted to reduce my dose from 2000 to 1500 mg, but I was uncomfortable with lowering it, so we agreed to try 7/7 first. If it works, great! If not, we’ll consider reducing the dose. I’m really hoping this helps me manage the side effects without lowering my dose, as I’m nervous about that. Fingers crossed for both of us!
0 -
I am so thrilled your oncologist finally saw the light and agreed to you trying the 7/7 schedule. I truly hope after you give your body sometime to adjust you will see a definite difference in how you feel and are able to stay on the higher dose. Fingers crossed. As you said you can look at lowering the dose if need be.
I have the rest of today and tomorrow left on my first week of the 2600 mg dose and I'm doing fine with it. Looking forward to my week off though as I think it does perhaps leave me more fatigued overall.
Yes our scans are quite close together so I will be hoping we both get to celebrate some good results. My oncologist called me yesterday just to check-in with how I was doing and as always asked how my pain was(I have very extensive bone mets from my skull down to my knees and everywhere in between). I told her I'm not the least bit concerned about my bones right now and focused totally on my liver. She said she always has both in her mind which I guess is good. Anyway the scan is the real diagnostic tool so I'll wait for that.
We are under a wind warning today and it's very windy outside right now so hubby tells me it's not safe to ride. Hoping it slows down later so I can get out. All the best to you and please keep me posted how you are doing. I am sending you positive vibes that the new schedule will work much better for you. Take care. Sandra
0 -
Hi Marcia. Well I am so glad you finally got a new oncologist/DO assigned and will have your first appointment coming up this week. Obviously the Patient Relations person was of no benefit at all and I'm sorry about that. That's why I always say how important it is for us to advocate for ourselves. I'm sure the new oncologist will get your bloodwork and scans sorted out quickly as they will want a baseline.
I'm still tolerating the 2600 mg dose and just have tonight's dose and tomorrows and I will look forward to the week off. If I were to pinpoint anything I would think perhaps I feel more fatigued than normal but certainly manageable. On Monday I will have my Covid vaccine so usually I find I feel ill for about a day after and then I'm fine. My hubby gets the flu and Covid the same time and never feels anything other than a sore arm. I'm not as lucky.
Anyway I'm happy that we are both doing relatively well and moving forward. Take care. Sandra
0 -
You have a very savvy MO, I had no idea it could help with so many things!! I got neuropathy in both feet when I was recovering from a shoulder arthroscopy and it came on hard all of a sudden a couple hours after I added back Ibrance, which I did a week after the surgery. I've since assumed that maybe I was already low in vit B12 (these meds can deplete them) and that the surgery nerve block or some other meds put me in a very low B12 danger area. Its been years since then, and the neuropathy has greatly reduced, but it was an awful year before I could even tell that things were getting better. Now I have just a bit of numbness in one foot, in part because after testing accupuncture and exercise, which did nothing, I found that taking Jardiance (which lowers blood sugar) was a big help. Jardiance is now recommended for diabetes-induced neuropathy, and altho I am not diabetic, I guess getting rid of the peripheral sugar helps the nerves recover, regardless of the cause of the neuropathy. Based on all this info you provided here, I'm going to closely monitor my B12 levels going forward, and will start taking methylcobalamin assuming B12 levels are not high, as that apparently could also cause problems.
Also, I see this Voltaren arthritis NSAID cream can cause a 4x reduction in HFS symptoms, so using both could be really helpful, along with avoiding the folates. Have you had any HFS issues at this 2600mg dose?
0
