First chemo today went awry..anybody else have this problem or know anything from experience?
They let me sit about an hour and a half before calling my name. I finally went to the receptionist to ask what the problem was, as did my husband before that, and all we were told was that somebody would be coming out to the waiting room to talk to me.
As it was getting close to two hours the charge nurse supervising chemo did come out. To make a long story short, she told me that due to the government announcement yesterday that made the nationwide shortage of Fluouracil very official to hospitals, I would not be able to get my chemo. I asked if they were out of leucovorin too and she said no, they had some in this week, only out of FU. I asked why couldn't I just get that along with the oxilpalatin and just not get the FU today. She said leucovorin is not given except in combination with FU, so my entire regimen would have to be changed.
I asked if I could postpone chemo till they had the FU back in stock. She said the hospital, as was suggested in the official announcement, was not putting anyone who was not already on the FU regimen on it now due to the uncertainty of steady supplies (I read the shortage will last at least till October after I got home today). She said my doctor was being paged to inform him of the situation and to ask for alternative orders. They finally took me back for infusion and said I would be getting a regimen of Oxilpalatin infusion plus Xeloda prescription pills.
Then my insurance company would not approve the Oxilpalatin because I was not getting it on the regular FU regimen. Their procedures for approval have not caught up with the official shortage. The hospital expects to get the insurance approval worked out...however, this does nothing for my confidence in chemo regimen.
After nearly 5 hours of getting nothing but saline infusion, we left the hospital. I expect the oxilpalatin to be approved and rescheduled next week based on the last thing I was told. I was also told the Xeloda would not be dispensed until after first infusion of Oxi since that is how it was sent to insurance.
In all my research and reading I have never heard of a chemo regimen for Stage IV of a combination of Oxilpalatin infursion plus Xeloda pills. Has anyone else?
This situation is diminishing my hope for a cure or long stretch of NED since FU is the most efficient chemo, especially since my cancer came back at high speed after I was only Stage IIA with no lymph node or metastasic involvement one and a half years ago. It could be anywhere now and just not showing up yet, just like it did not show up in my liver when it was there by CEA, PET or CT (only found by MRI).
K1
Comments
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Xelox
http://www.medicalnewstoday.com/releases/33200.php
Xeloda is an oral form of 5FU. You will be fine on this regimen.0 -
Oxy and xeloda
My aunt is on these.
She takes the pills for two weeks (days 1 through 14) and starts them the day she goes for chemo (Oxiliplatin) from the 15th day to the 21st day she does not have to take the xeloda and then the cycle begins again, go for chemo, start the xeloda the same day for 6 cycles. She just had her 4th treatment yesterday.
It seems to be working for her since her CEA numbers have dropped from 259 to 183 since April. The main side effect for her, other than the standard sensitivity to cold, has been her anger issues. Unlike many here she has not had nausea much at all. She does have constant diarrhea though but I've heard that's much better than being constipated. She did have the "first bite" side effect (meaning when eating after chemo the first bite hurt her jaw but that only seemed to last the first day).
PLEASE KEEP IN MIND, THAT EVERYONE REACTS DIFFERENTLY. As everyone here will testify to, chemo effects are different for everyone.
I hope this helps a little.
Marianne0 -
FUBuckwirth said:Xelox
http://www.medicalnewstoday.com/releases/33200.php
Xeloda is an oral form of 5FU. You will be fine on this regimen.
I am in my fourth three week cycle on the above regime. At the start, I looked into comparisons a little bit and I believe also that there is no significant difference. I have a distant memory that there is some difficulty sometimes switching from FU to Xeloda. I think there is an increase in side effects. I guess you don't have to worry about that though as that's where you are starting. It applies more to people who are changing regimes. I think it was related to folate.
Many other issues here but they can be considered later. Best wishes.
Norm0 -
I Did
Hey Kim
I did this combo for awhile - they later introduced Avastin to the mix. We were battling liver during those days.
I'll be back in the waiting room in September, the last week I believe, maybe Wednesday? If you see me in there, do stop by this time and say hi - we can chat:)
Oxy is effective, but so is Irinotecan. I still haven't found cure yet either and have not gotten any kind of "break" in many years either.
But, still here, currently 'watching and waiting' as I came through successful after this last 10-months of fighting.
-Craig0 -
You're an inspiration ...Sundanceh said:I Did
Hey Kim
I did this combo for awhile - they later introduced Avastin to the mix. We were battling liver during those days.
I'll be back in the waiting room in September, the last week I believe, maybe Wednesday? If you see me in there, do stop by this time and say hi - we can chat:)
Oxy is effective, but so is Irinotecan. I still haven't found cure yet either and have not gotten any kind of "break" in many years either.
But, still here, currently 'watching and waiting' as I came through successful after this last 10-months of fighting.
-Craig
Sundanceh - your story inspires me and gives me strength as newbie ... my mother was recently diagnosed and she just completed her 2nd chemo cycle.
How long ago were you diagnosed? and were originally diagnosed with liver mets?0 -
HI Jasmin:)jasminsaba said:You're an inspiration ...
Sundanceh - your story inspires me and gives me strength as newbie ... my mother was recently diagnosed and she just completed her 2nd chemo cycle.
How long ago were you diagnosed? and were originally diagnosed with liver mets?
Thank you!
I was diagnosed a little over 7-years ago in June 2004. I've been actively battling cancer during that entire time. Of course, it has not been easy and at different stretches it was just plain difficult, but I've been able to outlast it so far.
I've had cancer 3 times now, but have been able to knock it back down 3 times as well, so I have a winning 3-0 record.
Original diagnosis was rectal adeocarcinoma....turned Stage IV when it migrated to my liver....then it went to my lung and that's where I hope we hold the line.
It's been a long fight, but I'm still here and working full-time trying to pick up the pieces once more. Hoping #4 doesn't find me.
Thank you for your support - I appreciate that!
Tell mom to hang in there - we can fight this thing.
-Craig0 -
Is HIPEC an option?
I am so sorry. I just responded to you on another post and was wondering how thing were going.
If I have to go back on FU, I have already decided to go with Xeloda over the infusion. My oncologist is impressed and reports it works the same.
In the meantime, you can continue to recover from your port surgery and get stronger.
I wouldn't let an insurance companies approval of a drug regimen sway me...they are concerned about money...if they don't like something it most likely cost them more. They are usually very slow to approve new drugs due the bottom line, not any medical research they have done.
I have been doing a lot of research on this new chemotherapy HIPEC (google it and ask your oncologist). It looks promising, and you might be a candidate.
All the best to you,
Hart12120 -
Here is the reference on switching from FU to Xeloda: http://m.jco.ascopubs.org/content/26/20/3411.abstractHart1212 said:Is HIPEC an option?
I am so sorry. I just responded to you on another post and was wondering how thing were going.
If I have to go back on FU, I have already decided to go with Xeloda over the infusion. My oncologist is impressed and reports it works the same.
In the meantime, you can continue to recover from your port surgery and get stronger.
I wouldn't let an insurance companies approval of a drug regimen sway me...they are concerned about money...if they don't like something it most likely cost them more. They are usually very slow to approve new drugs due the bottom line, not any medical research they have done.
I have been doing a lot of research on this new chemotherapy HIPEC (google it and ask your oncologist). It looks promising, and you might be a candidate.
All the best to you,
Hart12120 -
Double postedHart1212 said:Is HIPEC an option?
I am so sorry. I just responded to you on another post and was wondering how thing were going.
If I have to go back on FU, I have already decided to go with Xeloda over the infusion. My oncologist is impressed and reports it works the same.
In the meantime, you can continue to recover from your port surgery and get stronger.
I wouldn't let an insurance companies approval of a drug regimen sway me...they are concerned about money...if they don't like something it most likely cost them more. They are usually very slow to approve new drugs due the bottom line, not any medical research they have done.
I have been doing a lot of research on this new chemotherapy HIPEC (google it and ask your oncologist). It looks promising, and you might be a candidate.
All the best to you,
Hart1212
This is an overwrite on double post. Sorry. Delete if possible or tell me how.0 -
ThanksSundanceh said:I Did
Hey Kim
I did this combo for awhile - they later introduced Avastin to the mix. We were battling liver during those days.
I'll be back in the waiting room in September, the last week I believe, maybe Wednesday? If you see me in there, do stop by this time and say hi - we can chat:)
Oxy is effective, but so is Irinotecan. I still haven't found cure yet either and have not gotten any kind of "break" in many years either.
But, still here, currently 'watching and waiting' as I came through successful after this last 10-months of fighting.
-Craig
Thanks, hope all checks out for you, and will look for you if I'm there that day.
Kim0 -
ThanksSundanceh said:I Did
Hey Kim
I did this combo for awhile - they later introduced Avastin to the mix. We were battling liver during those days.
I'll be back in the waiting room in September, the last week I believe, maybe Wednesday? If you see me in there, do stop by this time and say hi - we can chat:)
Oxy is effective, but so is Irinotecan. I still haven't found cure yet either and have not gotten any kind of "break" in many years either.
But, still here, currently 'watching and waiting' as I came through successful after this last 10-months of fighting.
-Craig
Thanks Craig, hope all checks out for you, and will look for you if I'm there that day.
Kim0 -
Thanks, Hart. I will askHart1212 said:Is HIPEC an option?
I am so sorry. I just responded to you on another post and was wondering how thing were going.
If I have to go back on FU, I have already decided to go with Xeloda over the infusion. My oncologist is impressed and reports it works the same.
In the meantime, you can continue to recover from your port surgery and get stronger.
I wouldn't let an insurance companies approval of a drug regimen sway me...they are concerned about money...if they don't like something it most likely cost them more. They are usually very slow to approve new drugs due the bottom line, not any medical research they have done.
I have been doing a lot of research on this new chemotherapy HIPEC (google it and ask your oncologist). It looks promising, and you might be a candidate.
All the best to you,
Hart1212
Thanks, Hart. I will ask about HIPEC too.
K0
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