Here we go. Xeloda dosage question

[SilverWedding]

I’ve stayed away a bit hoping this would all go away and/or not talking about it would reduce my breakdowns and migraines.

But here we go. Radiation and what I’ve learned from you as neo-adjuvant (?) Xeloda starts tomorrow for six weeks.

HANDLING
The paperwork says to ask the doctor or something like that before handling. I was going to set up the pills for the week in a pill organizer caddy. Can I touch them even though I’m not the one being treated?

DOSAGE
Both the 500mg and the 150mg bottle say to take three twice a day. So does he take six pills at each setting - or does toggle between taking the 500s after one meal and the 150s after another. I will of course ask oncologist tomorrow, but i was hoping some here could reassure me that taking six at once is actually a potentially correct method.

Thank you,
Cynthia

[SilverWedding]

I’m reading old posts to get some reassurance.

What I’m wondering is whether it is advantageous to take Xeloda during same hour as radiation.

Some people are even on a dosage for only on radiation days! I’ve also read that some have purposely timed taking it during the hour of radiation, but I’m not sure why.

Just trying to grab onto any advantage that I wouldn’t otherwise know.

Thank you again.

Cynthia

[CRguy]

HEY homie
I have combined your 2 topic posts into one thread because now, all the discussion will relate to your questions.

Oral Xeloda IS timed in relation to the radiation treatment = Check specifically with your own Oncs.

I took Xeloda 24/7 and only had radiation 5 days per week.

The precise dosing is based on a number of factors

I will of course ask oncologist tomorrow, but i was hoping some here could reassure me that taking six at once is actually a potentially correct method.

PLEASE ... YES check with Oncs as to exact instructions !!!!!!

BUTT IME ... the morning and evening doses were the same dosage.

IF your docs / Oncs / nurses have NOT made all this clear to you already .....
MAKE them give you the specific instructions or print them out so you have it at hand

YEAH chemo is serious business and the medical team NEEDS to make sure patients and caregivers KNOW what they are supposed to do !
... AND patients and cargivers in return .. NEED to know what the Docs told them to do !

WORD !

CRguy

[Rock_Robster]

Hi SilverWedding, I’ve just finished 5 weeks of this so happy to help where I can!

Firstly, you’re correct - what you are doing is called neoadjuvant chemoradiation therapy (CRT).

Dosage:
As others have said, please double-check with your onc or pharmacist on this. I was on 1500 mg, twice a day (175 lb guy) - so three of each twice a day sounds like a reasonable dose (1950 mg twice daily), though oddly specific (not sure why they wouldn’t just give 4 x 500mg...).

The morning and evening doses are usually the same.

Handling:
As far as I’m aware they’re safe for non-patients to handle, but obviously keep it to a minimum and wash hands afterwards.

Timing:
Most oncs will just say twice a day, roughly 12 hours apart. Within 30 mins after a proper meal is important too - did they mention that? I found two studies looking at timing vs radiation treatment - one showed no significant difference, another showed a small increase in response if Xeloda was taken 1-2 hours before radiation (ie targeting peak plasma concentration). The reason here is that Xeloda is cleared very quickly from the body. So I booked all my radiation treatments in the mornings, and took my morning dose an hour before I drove in. Figured why not. If this doesn’t suit though it doesn’t seem to matter a great deal - the main thing is that you get the doses in on radiation days. My onc also had me not take it on non-radiation days (i.e. weekends), but I’d check this too.

Good luck!

[SilverWedding]

HEY homie
I have combined your 2 topic posts into one thread because now, all the discussion will relate to your questions.

Oral Xeloda IS timed in relation to the radiation treatment = Check specifically with your own Oncs.

I took Xeloda 24/7 and only had radiation 5 days per week.

The precise dosing is based on a number of factors

I will of course ask oncologist tomorrow, but i was hoping some here could reassure me that taking six at once is actually a potentially correct method.

PLEASE ... YES check with Oncs as to exact instructions !!!!!!

BUTT IME ... the morning and evening doses were the same dosage.

IF your docs / Oncs / nurses have NOT made all this clear to you already .....
MAKE them give you the specific instructions or print them out so you have it at hand

YEAH chemo is serious business and the medical team NEEDS to make sure patients and caregivers KNOW what they are supposed to do !
... AND patients and cargivers in return .. NEED to know what the Docs told them to do !

WORD !

CRguy

Thank you very much

[SilverWedding]

Hi SilverWedding, I’ve just finished 5 weeks of this so happy to help where I can!

Firstly, you’re correct - what you are doing is called neoadjuvant chemoradiation therapy (CRT).

Dosage:
As others have said, please double-check with your onc or pharmacist on this. I was on 1500 mg, twice a day (175 lb guy) - so three of each twice a day sounds like a reasonable dose (1950 mg twice daily), though oddly specific (not sure why they wouldn’t just give 4 x 500mg...).

The morning and evening doses are usually the same.

Handling:
As far as I’m aware they’re safe for non-patients to handle, but obviously keep it to a minimum and wash hands afterwards.

Timing:
Most oncs will just say twice a day, roughly 12 hours apart. Within 30 mins after a proper meal is important too - did they mention that? I found two studies looking at timing vs radiation treatment - one showed no significant difference, another showed a small increase in response if Xeloda was taken 1-2 hours before radiation (ie targeting peak plasma concentration). The reason here is that Xeloda is cleared very quickly from the body. So I booked all my radiation treatments in the mornings, and took my morning dose an hour before I drove in. Figured why not. If this doesn’t suit though it doesn’t seem to matter a great deal - the main thing is that you get the doses in on radiation days. My onc also had me not take it on non-radiation days (i.e. weekends), but I’d check this too.

Good luck!

Thank you very much, RockRobster. Wow - you are in the thick of it. We booked 7:45am radiation. That means void at 6:45, then drink 12 or 16oz water (I forget qty) by 7:00, but since it should be taken 30 min after food, thinking to eat 8:15 and then take 8:45. Idk. That’s the plan for tomorrow. The only sticky point is we’d prob have dinner about 6:00pm, not 8:00pm, so it wouldn’t be that perfect 12 hours apart. Don’t know how critical that is. Since you have to have a full bladder for radiation, I was thinking eating too before radiation would just be too much. I just don’t know. I can’t wait for this tumor to be gone gone gone.

[Rock_Robster]

Yes that all makes sense.

I just did them all at once - up about 6:30, breakfast, Xeloda, bathroom and water - then left about 7:15 for a 7:45 treatment. I also had to adjust the water quantity and timing a bit, as my bladder kept being too full, then not full enough... The only downside with this plan is it’s a lot to force down if you’re not a morning person (which I am not), and once I actually threw up after the water, so I learned to take it slower.

I would usually have dinner about 7-8pm so that worked well, though often I’d forget the Xeloda and have to have another dinner at 10pm just to take it. I actually credit this extra meal as the reason I didn’t lose much weight during radiation!

And yes it looks like the thick of it now, but I actually feel great! I’m not looking forward to the after-effects of the resection, but like you I’m definitely excited about having the rest of this thing out

[Beckster]

I was on Xeloda for 6 months, 3000 mg per day. 500 mg (3 pills) in the morning and 500mg (3 pills in the evening). I would wake up around 6:00am and eat a piece of toast with a banana and take my pills around 15 minutes later. I would than eat something around 9-10 because I was hungry. Dinner was between 5 anf 6. My onc said that a half and hour would not make a difference, so sometimes I took it a 1/2 hour earlier and sometimes a 1/2 later. I stayed on this regiment for 6 months. You really do not have to eat a full meal before taking it. If we were going out to dinner with friends around 6-7, I would take my pills with a small amount of food before hand. He told me to wait one hour before eating again, so if we had dinner reservations at 6:30, I would take my pllls at 5:15-5:30 so I would be at the 1 hour window by the time we got to the resturant. You will find out that the regiment will become a new normal of the daily routine.

[Green Tea]

SilverWedding -

Would you be able to update your signature so that it contains all of the recent important information that you have learned from your doctors and from the written reports that you have now received? Right now there are a number of data items missing from your signature for a patient who is aready at the point of starting chemo/radiation. Your husband was diagnosed over a month ago, and by now should have received most of the data items for preliminary staging and treatment selection.

Also, could you give more details from the information sheet(s) you were given for the chemo/radiation phase? You should have been given an information sheet describing the overall procedure and the protocol being used, for example like this one:

https://www.beatson.scot.nhs.uk/content/mediaassets/doc/Radiotherapy_or_Chemoradiation_for_Rectal_Cancer.pdf

or like this one:

http://www.londoncanceralliance.nhs.uk/media/37186/CRC_CAPECITABINEplusRADIOTHERAPY_protocol_V1.0.pdf

or like this one:

http://necn.nhs.uk/wp-content/uploads/2012/12/Capecitabine-Radiation-CNTW-protocol-CRP09-CR018-V1.3.pdf


Also, you should determine your husband's Body Surface Area (BSA), since all dosing for Xeloda is based on BSA measured in meters squared (m2).

For a standard chemo/radiation protocol, the dose is usually set at 825mg/m2, which is 2/3 the normal dose used later in post-surgery administration of Xeloda . The reduced dose used in the chemo/radiation phase is mainly to facilitate the impact of the radiation. It is not considered as a full therapeutic dose. In other words, the low dose used in chemo/radiation is for purposes of "radio-sensitization" to make the cancer cells more vulnerable to radiation.

Also note that a "dose" is defined as the amount of Xeloda administered at one point in time. For chemo/radiation, there are always two doses given per day, one in the morning and one in the evening . Each of the two doses would be 825mg/m2 if they are using the standard chemo/radiation protcocol. In your husband's case, each dose consists of 6 tablets: three 500mg tablets and three 150mg tablets, for a total of 1,950mg each dose, or a grand total of 3,900mg per day. If you divide 1,950 by 825, this gives 2.36m2, which suggests that the doctor has calculated your husband's BSA at 2.36, which is at the top of the chart. You can verify this yourself by using your husband's actual height and weight in the online BSA calculator:

BSA Calculator

http://www.medcalc.com/body.html

[SilverWedding]

SilverWedding -

Would you be able to update your signature so that it contains all of the recent important information that you have learned from your doctors and from the written reports that you have now received? Right now there are a number of data items missing from your signature for a patient who is aready at the point of starting chemo/radiation. Your husband was diagnosed over a month ago, and by now should have received most of the data items for preliminary staging and treatment selection.

Also, could you give more details from the information sheet(s) you were given for the chemo/radiation phase? You should have been given an information sheet describing the overall procedure and the protocol being used, for example like this one:

https://www.beatson.scot.nhs.uk/content/mediaassets/doc/Radiotherapy_or_Chemoradiation_for_Rectal_Cancer.pdf

or like this one:

http://www.londoncanceralliance.nhs.uk/media/37186/CRC_CAPECITABINEplusRADIOTHERAPY_protocol_V1.0.pdf

or like this one:

http://necn.nhs.uk/wp-content/uploads/2012/12/Capecitabine-Radiation-CNTW-protocol-CRP09-CR018-V1.3.pdf


Also, you should determine your husband's Body Surface Area (BSA), since all dosing for Xeloda is based on BSA measured in meters squared (m2).

For a standard chemo/radiation protocol, the dose is usually set at 825mg/m2, which is 2/3 the normal dose used later in post-surgery administration of Xeloda . The reduced dose used in the chemo/radiation phase is mainly to facilitate the impact of the radiation. It is not considered as a full therapeutic dose. In other words, the low dose used in chemo/radiation is for purposes of "radio-sensitization" to make the cancer cells more vulnerable to radiation.

Also note that a "dose" is defined as the amount of Xeloda administered at one point in time. For chemo/radiation, there are always two doses given per day, one in the morning and one in the evening . Each of the two doses would be 825mg/m2 if they are using the standard chemo/radiation protcocol. In your husband's case, each dose consists of 6 tablets: three 500mg tablets and three 150mg tablets, for a total of 1,950mg each dose, or a grand total of 3,900mg per day. If you divide 1,950 by 825, this gives 2.36m2, which suggests that the doctor has calculated your husband's BSA at 2.36, which is at the top of the chart. You can verify this yourself by using your husband's actual height and weight in the online BSA calculator:

BSA Calculator

http://www.medcalc.com/body.html

Thank you, Green Tea. I don’t know why I don’t have any paperwork!! So, I signed into the cancer center’s patient portal - as of yesterday, nothing is entered. I think I’ll write down all those items you mentioned and call nurses in both oncology and radiation. Thank you. I dont even have bloodwork and was hoping I could track that CEA number you all use. I wonder why we have nothing while all of you have all kinds of details. Do you all just get that on paper automatically at visits, or is everyone on some kind of a patient portal to view it all?

[Dionca]

If it's not available online, you should ask for copies of everything - bloodwork and scan reports etc. each time your husband sees the oncologist.

I always have to ask, they never offer them automatically.

[CRguy]

Thank you, Green Tea. I don’t know why I don’t have any paperwork!! So, I signed into the cancer center’s patient portal - as of yesterday, nothing is entered. I think I’ll write down all those items you mentioned and call nurses in both oncology and radiation. Thank you. I dont even have bloodwork and was hoping I could track that CEA number you all use. I wonder why we have nothing while all of you have all kinds of details. Do you all just get that on paper automatically at visits, or is everyone on some kind of a patient portal to view it all?

You might check to see if there is a specific "medical records" department which could co-ordinate the information requests for you, from the different departments. There may be a time delay while reports etc. are "signed off" by the Docs before being released to you.

I used the medical records dept. at our cancer agency for everything related to their treatments etc.
I used the private lab's website for anything out of agency test results, and I used my family Doc for anything else which came my way via her office.
I kept my binder FULL of all the copies ... BUTT that was a few years back and many centers now may prefer to go the e-info route ??

Keep checking

Best wishes
CRguy

[Green Tea]

Thank you, Green Tea. I don’t know why I don’t have any paperwork!! So, I signed into the cancer center’s patient portal - as of yesterday, nothing is entered. I think I’ll write down all those items you mentioned and call nurses in both oncology and radiation. Thank you. I dont even have bloodwork and was hoping I could track that CEA number you all use. I wonder why we have nothing while all of you have all kinds of details. Do you all just get that on paper automatically at visits, or is everyone on some kind of a patient portal to view it all?

I'm surprised that you are not seeing anything on the patient portal. According to a recent press release, the Christiana Hospital system is supposed to have a state of the art Electronic Medical Records System, for which they have apparently received an award:
https://electronichealthreporter.com/christiana-care-recognized-as-a-national-leader-in-health-care-technology/#more-17952

If you are not receiving anything, then there may be different reasons for this.

First of all, if it is your patient portal that you registered using your own social security number, then of course there won't be any info there about your husband, because they do not allow caregivers to access other patients' information. It would have to be your husband who applies for his own portal account , and he would be the one to access it.

Second, the test results you are referring to may have been generated before your husband applied for a portal account, in which case there was nowhere to send the results at the time when the results became available.

Third, the results you are interested in may not have come from one of the Christiana labs or scan units. If your husband went to a private lab or a private clinic, or a different hospital for his tests, then these results would not automatically be uploaded into the Christiana master database. Christiana only promises to upload the results if they come from one of their own units, or their own doctors. I think your new doctor is a private one who is allowed to practice medicine and do surgeries at Christiana, but he has his offices elsewhere and is not a permanent member of the Christiana staff. Maybe this is part of the problem.

Fourth, on the requisition form, the doctor who requested the tests may not have explicity requested that an electronic copy be sent to the patient's portal. He may need to explicitly mention this in the box on the requisition form, and give your husband's Christiana Graham Cancer Center patient number otherwise the hospital may only send the results to the requesting doctor. And the requesting doctor may not even bother to give you a printed copy, but instead summarize the results over the telephone or have his nurse give you what she thinks are the most pertinent details. What you need, actually, is the full, signed report.

Fifth, there is another problem that sometimes arises. For some reports, there are different versions of the report required by different offices, for example, one version required by the Insurance company, another version required by the State Department of Health, and a more complete version for the hospital master database. The version posted on your portal may not be the one you want. It may not be a complete version. You may have to explicitly request the complete version not just the abridged version.

I'm pretty sure that you can get your husband's portal updated with all relevant prior lab and scan results, but it may be necessary that the request to do this come from the doctor(s) who originally requisitioned the tests. In my hospital, I can bring my lab reports from outside clinics and ask the hospital to scan the reports and put the results in my electronic file. I do this any time I get a special test done from some other lab.

Let us know how the nurses respond to your question. According to the Christiana website, your husband should already have been assigned a Nurse Navigator to provide support. Is this the nurse you are referring to?

"..You will be assigned a nurse navigator and a social-work team. This team will follow you during your entire course of treatment. The nurse navigator acts as the team leader and provides support, education and a comprehensive assessment..."

If so, your husband should take full advantage of this to get the support he needs. It seems to me that the Nurse Navigator should be able to explain how your husband can get his Portal updated with all of the relevant test results.

By the way, does your husband have the iPhone app for accessing his Christiana Healthcare records by phone?
https://appadvice.com/app/christiana-care-patient-portal/1446508191

[CF_69]

I was on 1800 mg twice a day during radiation, on radiation days only. 3 x 500 mg and 2 x 150 mg per dose.

I was told not to handle the pills but to pop them into a cup and to take them that way. Also was told to keep my body fluids to myself while on chemo.

Now I’m doing the adjuvant phase, which is 5000 mg a day.

5 x 500 in the morning and 5 x 500 in the evening.

It’s not fun but it’s necessary, and you will get through it.

Best wishes to you through your treatment.