new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

[weisssoccermom]

If you had a tumor big enough to be seen via a PET scan in your rectum it would have been seen on the colonoscopy. My guess is it is either OUTSIDE or in the vicinity of the rectum (pelvis) not inside the colon/rectum itself. Anything that is big enough to be seen via the PET scan AND is inside the rectal/colon walls is big enough to be seen with the actual scope. Someone needs to get specific with you and sit down and give you all the facts that make sense.
For me, I would want to know the following:

1. The mass that is 'rectal' in nature....where exactly is it? (It's honestly hard to tell from the pictures...I can't blow them up. Perhaps they didn't tell you???
2. What has made them classify you as a stage 3C and not a 4? I'd want to know that.
3. Were biopsies taken from the rectal mass?
4. Where exactly is this mass (seen via PET) in the 'middle'? How big is it measuring? How 'active' is it...based on PET.
5. Are there other areas (from PET/scope/actual operating visual field) that are suspicious?
6. Just an FYI.....you can't remove one's pancreas.....you need that organ to survive. However, it would be nice to hear an estimate of how many lymph nodes looked suspicious that the were left in in the vicinity of the pancreas.
7. Did anything else light up on the PET scan? Local or regional nodes? Masses, etc.?
8. Finally, Is the plan (chemo) to get you to a place where you can have the other masses potentially surgically removed?

I don't know if you took another adult with you to the oncologist's appointment but if you didn't, I would make sure that the next time you go, take another adult and my suggestion would be to leave the kids at home. You need another adult with you to take notes and/or ask questions that you both have jotted down before you get there. Too often, it is so overwhelming, particularly in the beginning, that you really do need another adult to help you wade through all of this....to be your ears and to hear everything that the doctor says. It's too easy, particularly if you are the only adult and/or if you are preoccupied with kids, to miss something. It's next to impossible to try and then remember accurately everything the doctor said.

[O Stoma Mia]

NOTE: If you do indeed have a TYMS polymorphism then they need to be very careful in what they give you for chemo. Apparently severe toxicities can develop in these circumstances when 5FU or Xeloda (capecitabine) are used.

Pancytopenia and Severe Gastrointestinal Toxicities Associated with 5-Fluorouracil in a Patient with Thymidylate Synthase (TYMS) Polymorphism
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5071174/

[258ButterflyMama]

. . . i just have no idea what all those abbreviations are NED ? and other things. no idea at all. . so i guess i'll just add a signature with my entire info and someone can turn it into jargon for me?

Again, you really want to read this sticky near top of forum "Terminology and abbreviation" First page and last page most useful. Click on link below, it will take you to the thread.

viewtopic.php?f=1&t=5366

FYI NED is short for No Evidence of Disease.

Lee

thanks I am reading thru the abbrevs. . i don't have a lot ofonline time, so i do this in spits and spurts. . as i figure out what all the applicable abbrevs are for me, i will change my signature i have the abbrevs opened up on another tab - and will look up the tumor size info and all that stuff. i have it in a huge pile of medical papers.

i will be asking the surgeon on tuesday when he puts in the port the questions about how many lymph nodes he left behind knowingly (he couldn't take them) he took everything he could. . i really do trust this guy. . my oncologist, well, not so sure about him. he's all nice and sweet. drives me crazy. i prefer the straight info and he's all 'i'll be supportive'. i did ask if the chemo plan was palliative or curative and he's saying it's curative. . . so i don't know. will look up the pet scan results as well.. . and will see if i can get that info here. trying to get my scanner to work for better pictures . . my phone is not greatest for this.


as for not bringing the kids. i wish i could leave them all home but i cannot. and i'm using up all my 'favors' as it is with all the stuff that's already happened. folks are very busy and don't have a lot of time to help. it's a bit frustrating. i don't have family nearby. my parents both died of many cancers years ago. . once school is back in session, i will do this stuff without the kids, but on break, well, it's hard.

[Lee]

i will be asking the surgeon on tuesday when he puts in the port the questions about how many lymph nodes he left behind knowingly (he couldn't take them) he took everything he could. . i really do trust this guy. . my oncologist, well, not so sure about him. he's all nice and sweet. drives me crazy. i prefer the straight info and he's all 'i'll be supportive'. i did ask if the chemo plan was palliative or curative and he's saying it's curative. . . so i don't know. will look up the pet scan results as well.. . and will see if i can get that info here. trying to get my scanner to work for better pictures . . my phone is not greatest for this.
.

Is there any way possible to look for a new oncologist? You are in the fight of your life. You want Dr.(s) who going to treat you aggressively. Not all Dr.(s) graduate at the top of their class. If you don't feel good about this Onc, find one you are comfortable with. If you have not already done so, get a 2nd opinion at a major cancer treatment center.

Can your kids babysit each other? Mine were 11 & 9 when I was diagnosed. Yes in the beginning, Dr appt at every turn. I remember on a few occasions seeing 2-3 Dr.(s) a day. That was when I started having my kids babysit each other. Not at night time, butt during the day time. Not sure where you live (city vs small town) or your financial situation, butt there are places where you can drop your kids off where they are well taken care of. In Atlanta when DH and I wanted a night out, we took our kids to a place called "Child's Night Out". They loved it, they thought they were getting the better end of the deal vs having to show good table manners at a sit down dinner. I assume there is something like that just about everywhere.

Hope this helps,

Lee

[258ButterflyMama]

just found this forum again.

did 13 rounds of chemo thus far. oxaliplatin was a doozy. apparently can not do 5fu anymore either. . .

he wants to start something new that causes rashes. he didn't give me the name of the chemo. i didn't realize he didn't tell me name til after i was home again. sigh. . .

had another surgery actually a few since the first one. . .

i have new weird lumps appearing in places that are concerning.

i did fire my first oncologist and have a differnent one. the one i have now has an entourage of young docs that follow him around. they're different kids every time.

i have another scan and a colonoscopy next week.

my kids just realized i was sitting at the computer and now i gotta go deal with them.

[Pyro]

just found this forum again.

did 13 rounds of chemo thus far. oxaliplatin was a doozy. apparently can not do 5fu anymore either. . .

he wants to start something new that causes rashes. he didn't give me the name of the chemo. i didn't realize he didn't tell me name til after i was home again. sigh. . .

had another surgery actually a few since the first one. . .

i have new weird lumps appearing in places that are concerning.

i did fire my first oncologist and have a differnent one. the one i have now has an entourage of young docs that follow him around. they're different kids every time.

i have another scan and a colonoscopy next week.

my kids just realized i was sitting at the computer and now i gotta go deal with them.

Erbitux or vectibux im willing to bet, you can take antibiotics as well as certain face creams to help.