Page 3 of 4

Re: Surgery Pathology Report

Posted: Thu Sep 26, 2019 1:36 pm
by Beckster
I was on Xeloda for 6 months for stage 2A. 3,000mg per day. Three 500 mg tablets in the morning and three 500 mg tablets in after dinner. It was based on my weight back than, which I was 152 pounds and 5'2".

Re: Surgery Pathology Report

Posted: Thu Sep 26, 2019 1:39 pm
by Beckster
MistyBlu wrote:Wow, thanks Robster. That helps a lot. All was familiar so I know others here have given me the same info just not all in once place.

Rock_Robster wrote:Poorly differentiated cancer cells (also known as ‘high grade’ or ‘grade 3’ cells) is considered a high risk factor, which may explain why oxaliplatin is being offered as an option in your case.
Cheers
Rob


So I was reading over the pathology report again and it says grade 2, not grade 3. So I will need to ask about that since that's my only high risk factor and there's a discrepancy. I planned to take the Xeloda pills for six months. Then reconsidered when NHMike told me about hand and foot being permanent. Now maybe I don't need any meds. Next week I have a second opinion with MSK. By then at least I'll be more informed from this exercise.

Where can I get the EMVI info? Should it be on the pathology report? I Don't see the acronym or it spelled out.


EMVI stands for Extramural Vascular Invasion. I thought this was more important for rectal than colon....but I am not sure. You might have a different pathology from MSK, especially if your original pathology was done at a local center and not a large cancer institute.

Re: Surgery Pathology Report

Posted: Thu Sep 26, 2019 2:50 pm
by MistyBlu
Jacques wrote:
MistyBlu wrote:For one, where are you getting 125 mg. tablets? Normally Xeloda/capecitabine is issued only in 150mg and 500mg tablets.

Another thing is that this dose looks to me like it is way off the dose level that should be given to a 160 lb, 5'3" person. Did MSKCC have anything to say about that?

Before you go too far along on this dosing schedule I think that you should verify, from an independent source, that this is the pill count that you should really be taking.

Is your oncologist from ORMC? Is he/she a Board Certified Medical Oncologist?


Jacques, don't blame the ONC because my note-taking skills are lacking....I got the dosage right but I think in my head I did that pill count to equal 1,250. I know I saw 1,250 in that database but I guess Beckster answered my next question, I will probably be rounded and get 1,150. I'll see the script tomorrow so I'll know then.

Anyway, I went to MSK and here are my thoughts - and theirs.

So they would like to do molecular and BRAC testing to see if there are other indicators to warrant further treatment. They feel, in my situation, IIA with no risk factors the benefits of Xeloda are not that great. So he agrees it’s a grey area. It’s up to me if I want to do nothing and monitor or take the meds for the additional benefit even if it is minimal. So if I were to go with MSK, unless they found something with these additional test, they would recommend 6 months of Xeloda at the same dosage or DO Nothing and monitor. Same choices. He agreed that my decision to take 6 months of Xeloda is reasonable and comes with the least side effects.
On another note, not sure how to feel about MSK. That place is like a county club. All kinds of snacks, magazines, games, movies. People chatting in groups. A pianist. I listened to people talking and they literally spend the day there. I saw people with huge bags of knitting stuff, slippers etc. Ok I’m not trying to spend my whole life on cancer. I not going into that building and turning that into my whole day like a job. I want to return to my regular life to some degree. I don’t want to have that be my full-time job. And I know that becomes some people’s reality but I’m not ready for that. In my doctor’s office, I’m uncomfortable. I have/had cancer. I go in do what I have to do and leave. I just felt like those people were too comfortable sitting in there instead of being outside living. And when I asked, the nurse told me a lot of them finished treatment earlier in the morning and just like to ‘hang around’.
And, they’re very slow. All documents were sent ahead to them and I was still there waiting for three hours for a consultation that took less than 30 minutes. And I was warned that transferring to them would mean lengthy appointments. When I asked what for they said there’s just a larger population of people and this is a hospital. Appointments generally take 2-3 hours. OMG!
I think I’m going to ask my doctor to do the additional testing and stick with him since MSK had nothing contrary to say.

Re: Surgery Pathology Report

Posted: Thu Sep 26, 2019 2:54 pm
by NHMike
MistyBlu wrote:
Jacques wrote:
MistyBlu wrote:And, they’re very slow. All documents were sent ahead to them and I was still there waiting for three hours for a consultation that took less than 30 minutes. And I was warned that transferring to them would mean lengthy appointments. When I asked what for they said there’s just a larger population of people and this is a hospital. Appointments generally take 2-3 hours. OMG!
I think I’m going to ask my doctor to do the additional testing and stick with him since MSK had nothing contrary to say.


I think that you'd like Dana Farber. They're more like an assembly line for medicine.

Re: Surgery Pathology Report

Posted: Thu Sep 26, 2019 3:13 pm
by MistyBlu
NHMike wrote:
I think that you'd like Dana Farber. They're more like an assembly line for medicine.


I'm still treated nicely and I'm not rushed. I have the doctors full attention at appointments. And I'm seen on time for the most part. I just don't want all that extra. MSK depressed me a bit. I want to feel like one day I never have to see these people again not like these are my new friends for life.

Re: Surgery Pathology Report

Posted: Thu Sep 26, 2019 6:22 pm
by Jacques
MistyBlu wrote:...Jacques, don't blame the ONC because my note-taking skills are lacking....I got the dosage right but I think in my head I did that pill count to equal 1,250. I know I saw 1,250 in that database but I guess Beckster answered my next question, I will probably be rounded and get 1,150. I'll see the script tomorrow so I'll know then..

So, when you get the script tomorrow, will it tell you how many big pills and how many small pills to take each morning and each night?

Please let us know what the script says.

Who wrote the script? Is he/she a Board Certified medical oncologist?

Also note that each time you have an appointment with the oncologist you should be weighed, since dosage is dependent on BSA which in turn is dependent on weight.

Note: As others have already said, there are two different versions of 1,250 -- 1,250 mg, and 1,250mg/m2. It's very, very important that both you and your oncologist understand the difference so that the pill-count is calculated correctly.

When you pick up your prescription you could ask the pharmacist if you could have a copy of the "Xeloda package insert." This should describe the procedure for determining accurate pill count for a 1,250 mg/m2 regimen.

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 9:07 am
by MistyBlu
I was unable to get the actual script because I have to go through a specialty pharmacy. Also, NY they tend to not give out scripts anymore. They send them straight to the pharmacy.

I asked the specialty pharmacy what they received??? I'm shocked now to discover they have two scripts 500mg(3 big pills) and 150 (1 little pill) to make a total of 1,650mg twice a day. I called the doctors office to verify that's what he sent in and yup! how does that just change? They scheduled me for some nurse practitioner class on chemo and meds etc. Honestly, I was going to bail but now I'm going so I can find out how I'm getting 400 more mg.

Jacques, does this new dosage sound better. And yes he's board certified. I've been dealing with an insurance team in his office. Their jobs is to get stuff approved etc...

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 9:11 am
by NHMike
MistyBlu wrote:I was unable to get the actual script because I have to go through a specialty pharmacy. Also, NY they tend to not give out scripts anymore. They send them straight to the pharmacy.

I asked the specialty pharmacy what they received??? I'm shocked now to discover they have two scripts 500mg(3 big pills) and 150 (1 little pill) to make a total of 1,650mg twice a day. I called the doctors office to verify that's what he sent in and yup! how does that just change? They scheduled me for some nurse practitioner class on chemo and meds etc. Honestly, I was going to bail but now I'm going so I can find out how I'm getting 400 more mg.

Jacques, does this new dosage sound better. And yes he's board certified. I've been dealing with an insurance team in his office. Their jobs is to get stuff approved etc...


My Neo-Adjvant was about 3100 and Adjuvant was 3,900 so the dose you're getting seems reasonable.

It sounds like your oncologist didn't do an accurate job in earlier meetings.

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 9:17 am
by Rock_Robster
NHMike wrote:
MistyBlu wrote:I was unable to get the actual script because I have to go through a specialty pharmacy. Also, NY they tend to not give out scripts anymore. They send them straight to the pharmacy.

I asked the specialty pharmacy what they received??? I'm shocked now to discover they have two scripts 500mg(3 big pills) and 150 (1 little pill) to make a total of 1,650mg twice a day. I called the doctors office to verify that's what he sent in and yup! how does that just change? They scheduled me for some nurse practitioner class on chemo and meds etc. Honestly, I was going to bail but now I'm going so I can find out how I'm getting 400 more mg.

Jacques, does this new dosage sound better. And yes he's board certified. I've been dealing with an insurance team in his office. Their jobs is to get stuff approved etc...


My Neo-Adjvant was about 3100 and Adjuvant was 3,900 so the dose you're getting seems reasonable.

It sounds like your oncologist didn't do an accurate job in earlier meetings.

It definitely sounds better to me too. I did 1500 mg twice daily during chemoradiation, and this was a “light” dose (due to the radiation at the same time). I must say my calculation based on your height & weight is still higher than what they’re prescribing, but I’m reluctant to go into this too much as I’m not a doctor or pharmacist, and they should be able to explain this to you. For peace of mind, I would be asking them to explain the calculation they used to get to your dosing (the pharmacist can be a good independent check if you’re unsure about the doc).

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 9:42 am
by MistyBlu
Did any of you lose hair or weight? With the one week break, I'll be on this until next Summer!

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 9:46 am
by Rock_Robster
MistyBlu wrote:Did any of you lose hair or weight? With the one week break, I'll be on this until next Summer!

No hair loss for me. I actually gained weight because I would forget to take the Xeloda with dinner, so I’d have to have a 4th meal before bed :)

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 10:41 am
by NHMike
MistyBlu wrote:Did any of you lose hair or weight? With the one week break, I'll be on this until next Summer!


I gained weight on Chemo but that's because I didn't work out as much.

My hair thinned but that's due to age.

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 11:56 am
by Beckster
I gained 12 pounds on Xeloda! My onc told me that I can eat whatever I wanted..so I did! :lol: No hair loss either!

Xeloda (capecitabine) dosing instructions

Posted: Fri Sep 27, 2019 12:24 pm
by Jacques
MistyBlu wrote:I was unable to get the actual script because I have to go through a specialty pharmacy. Also, NY they tend to not give out scripts anymore. They send them straight to the pharmacy.

I asked the specialty pharmacy what they received??? I'm shocked now to discover they have two scripts 500mg(3 big pills) and 150 (1 little pill) to make a total of 1,650mg twice a day. I called the doctors office to verify that's what he sent in and yup! how does that just change? They scheduled me for some nurse practitioner class on chemo and meds etc. Honestly, I was going to bail but now I'm going so I can find out how I'm getting 400 more mg.

Jacques, does this new dosage sound better?And yes he's board certified. I've been dealing with an insurance team in his office. Their jobs is to get stuff approved etc...

For your information:

  • Here is an on-line calculator that will calculate both your Body Mass Index (BMI) and your Body Surface Area (BSA).

    http://medcalc.com/body.html

    For your height (5'3" = 63") and weight (160 lb.) your BMI is 28.3 (Overweight), and your BSA is 1.759 m2
    .
  • Please note that, if I have calculated correctly, for a person with BSA of 1.759 the recommended dose (twice daily) is: 4 big pills and 1 small pill, equalling 2,150 each dose, for a grand total of 4,300 mg Daily Dose.

    You can verify this yourself by reading Table I in the Xeloda package insert :

    https://www.drugs.com/dosage/xeloda.html

MistyBlu wrote:... I'm actually quite hefty. 5'3 160bs. He did ask for height and weight and ...

But the real question is: Does he know how to calculate BSA, and did he calculate it correctly??

= = =

Note: Table I in the Xeloda package insert is for standard adjuvant therapy at the regular full standardized dose of 1,250 mg/m2, which is what the X-ACT study used. This is different from the dose usually used in neo-adjuvant chemo/radiation. In the latter case, the Xeloda is given at a reduced level of 825 mg/m2 (i.e., 67% or two-thirds of the full dose) and serves mainly as a facilitator of radiation.

When comparing Xeloda dosages across patients it is very important to pay attention to the type of regimen the patient is on (i.e., adjuvant chemotherapy vs. neo-adjuvant chemo/radiation therapy). The dosage levels are different and the levels of side effects are different. In the one case it is a full-strength therapeutic dose, while in the other case it is only a 67% reduced dose.

Re: Surgery Pathology Report

Posted: Fri Sep 27, 2019 1:44 pm
by MistyBlu
NHMike wrote:

I gained weight on Chemo but that's because I didn't work out as much.
[/quote]

Aren't you the one following the anti-inflammatory diet. I started that! Kinda sucks...