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.
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?
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.
NHMike wrote:
I think that you'd like Dana Farber. They're more like an assembly line for medicine.
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..
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...
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.
MistyBlu wrote:Did any of you lose hair or weight? With the one week break, I'll be on this until next Summer!
MistyBlu wrote:Did any of you lose hair or weight? With the one week break, I'll be on this until next Summer!
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...
MistyBlu wrote:... I'm actually quite hefty. 5'3 160bs. He did ask for height and weight and ...
NHMike wrote:
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