Re: What Chemo should be used for me?

I love your "potty" humor. Have a great weekend!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Chemo should be used for me?

Made it home, no accidents along the way!! Just think, I get to do this every Friday for the next 3 months except for off weeks!!! Took about 5 hours with the doctor visit included. 4.5 without a visit to the doctor. My bloodwork looked pretty good today also after the off week:

WBC     4.2
RBC      4.71
Hgb     13.5
HCT     41.7
Plat    257
ANC      2.2

We will see how next weeks levels read!! Have a great weekend everyone!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Derin...great blood work.  Amazing the things that thrill us on this site.  You must be excited not having to spend so much "quality time" at a nearby restroom. 
Take care and enjoy your well deserved break.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What Chemo should be used for me?

Here I sit Saturday morning at 3am, can't sleep. Time to go upstairs to try to anyway. So far so good, no nausea so far, Emend seems to be working! Relaxing weekend planned, maybe fishing a bit if weather is nice and I'm up to it...

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Derin:
I woke up at 3:00 a.m. too.  Couldn't sleep due to chemo and the steroids I received Friday afternoon!  Think I'll get a couple of chores out of the way, after I read through the Discussion Board!

Cindy

Re: What Chemo should be used for me?

Cindy and Derin, I also woke up at 3AM - steroids! We must think we are a bunch of roosters! Going to see what old movie is on TLC!!! Have to make my 'Veggie" pate for Super Bowl tomorrow.   For anyone who loves chopped liver pate, this is pure veggie and tastes just like it without the chicken livers.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Chemo should be used for me?

Derin,

It's funny how cancer treatment works sometimes.  Some people are so tired they can't get out of bed and others are up at 3am because they can't sleep. I've always been the one that can't sleep and I blame the pre-chemo steroids.  I hope you are able to get some good rest! And good luck fishing!

Susie

Re: What Chemo should be used for me?

No fishing so far today, but we're cooking meatballs for a superbowl 'party' at the clubhouse. No real bad effects chemo wise, tennis for an hour yesterday and then hit the gym for biceps/triceps while the kids were in fencing. Took a 30 minute nap before dinner and that was it. Today was just running errands and nothing strenuous, but eating will take a lot of energy a bit later! Keeping my fingers crossed... That Emend anti-nausea stuff makes me a bit jittery, but other than that nothing. Enjoy the football!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

It's funny that so many of us have sleeping problems. I've never been able to sleep a whole night but chemo really knocked me off kilter. I always thought it was the steroids that made me sleep less. Of course, with no chemo since November I have to figure out something else.
Now I think it's just the brain that won't shut up. I fall asleep and then around 2 or 3 I wake up thinking, "what if I ask my dr. this? or that?" or "what if this happens?" and then I can't sleep. It's a good thing I got laid off and don't work!  big_smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: What Chemo should be used for me?

Dose 2 of Gem/Cis tomorrow. Another 5 hour session with 10 trips to the bathroom, joy joy!! I have a prescription for Zofran and haven't had to use any at this point. The Emend seems to do the trick for the first 3 days and afterwards I haven't been feeling anything out of the ordinary. I was a bit tired on Tuesday night (maybe from the gym on Mon/Tue evenings) so I went to sleep at 9:30 and didn't wake up until 8am, what a great night sleep! Hoping I won't be as wired tomorrow night after the treatment, those steroids jack you up something fierce!! Hope all is well with everyone else...

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Hope everything goes well for you tomorrow, Derin.  Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: What Chemo should be used for me?

Well, here I am wired again. Gotta love the steroids... Here are the bloodwork numbers:
WBC    3.4 (4.2 last week)
Hgb     13.4 (13.5)
HCT     41.2 (41.7)
Plat     308 (257)
ANC     1.6 (2.2)

I thought chemo was supposed to lower the platelets?? No nausea (thanks Emend), and all week I didn't have to take a Zofran at all! 5 hour day, 8 trips to the potty, and got home to do about 3 hours of work. Then cooked three very nice 16oz rib steaks on the grille with sweet potatoes and a 100% organic salad.

Gave the wife a girls night out with friends in the neighborhood (yes, that meant I did all of the dishes and cleaned up the whole kitchen, but hey, steroid wired, might as well!) and she still isn't home yet so hope she is having a good time. Hope everyone has a great weekend!! Hey, just heard the garage door open, gotta run!!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

You go, Derin!! You are the best! Wish I could loose some of your water for you...still weaning off my steroids. Had a Girl's  night Thursday in Scottsdale. Dinner, karaoke, and a live trio who sang for 2 hours and sang only Motown!!!! It was great. Of course most of you are probably too young to know Motown and I couldn't dance on the floor due to my swollen ankles from the Pred but MAN did I chair dance! Couldn't sit still to that music and I was exhausted! A night out does wonders and I just love reading your posts. it goes without saying...keep up the good work!!! Think your wife would mind if I sent you a huge hug? Here goes! big_smile

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Chemo should be used for me?

Derin,

Watch out for dropping neutrophil counts (ANC 1.6). Stay on top of your oncologist if ANC drops further. You run the risk of catching infections if neutrophils drop too low.

FYI, our oncologist prescribed Neupogen shots when my wife's ANC dropped to 1.4. Neupogen worked very well. The last ANC reading was 5.8.

Re: What Chemo should be used for me?

Eli,
It was at 0.9 about 3-4 weeks ago, and said if it was lower than that they would have to do something about it but the number rose each successive week. I'll see how the bloodwork does this Friday and ask a few more questions...

Very good day today, bunch of house cleaning with the whole family, gym for an hour with my son and he did his fencing while I hit the sauna/steam room after the workout. Cleaned up my father-in-law's grill (burners were pretty gunked up, have new guts ordered to install on Monday if they arrive so we 'prepped' today) and then have relaxed the rest of the night. Mitzvah Day tomorrow instead of Hebrew school for my daughter, so the whole family will go to donate some time to a worthy cause (not sure what we do yet, we will find out when we get there!) and tomorrow night is Daddy Daughter dance at one of Sydney's friend's synagogue so we get to dress up and have some fun!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Derin: Have a great time!! Sounds like you've barely slowed down. I hope the chemo stays as a "small nuisance". I don't think I've done as much in the past year as you've done this past month. Just reading your posts make me tired!  big_smile

Enjoy the dance with your daughter and keep posting. It's making me feel like a lazy bum!!  smile

Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: What Chemo should be used for me?

I am new to this website. My son who is 45 has been on Gemzar for six treatments and has been very ill. He has decided to quit Chemo. According to the doctors he has, there is nothing that can be done to remove the tumor. He has lost 50 lbs since November 18th, the day he was told that he was terminal. My question now is, why did his oncologist put him on Gemzar in the first place. We did not get a 2nd opinion at a major cancer center. My son has decided to go on hospice. I think he has no hope to live anymore with the nausea and vomiting that happem with the chemo or it could be the cancer. He is my only child and he wants me to let him go. I am still interested in clinical trials but at this point, I don't think he is strong enough to go thru another experience. What would you do if you were in my shoes?

Rachel

Re: What Chemo should be used for me?

Dear Rhike, welcome to our wonderful family and I am so very sorry to hear about your son. I would suggest that it is still not too late to get that second opinion. It can't hurt a thing. I feel that part of the reason your son is down is because he has no game plan. A game plan always puts one in to a fighting mode. He also has age on his side. I am wondering how big the tumor is. Has it metastised? Where is it located? And where is he being treated. May I also suggest you post your introductions under INTRODUCTIONs as it might get lost on this other thread. Did the Doctor say why they can't remove the tumor? You have come to the right place and I hope we can help, just need a little more information.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Chemo should be used for me?

Rachel,
45 is too young to give up! I concur with Lainy to post in the introduction section, it will open up the floor to many more comments. Lainy also had some good questions regarding tumor size, metastasis, and location that would help others provide additional input for you. We wish you the best for your son and get that second opinion for sure.

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Hi,Rachel,
I am a cancer patient for sometime now,did your son recently have a follow up CAT SCAN OR MRI done to see whether the6 treatments works or not.( normally with chemo treatment , the scans should be done every 3-4month to monitor the progress of the therapy.) is it possible you email me the "impression " segment of the most recent scan report for me to take a look for what alternative your son can have.I am not a doctor, but I may be of help to your son in terms of information. Like other member of this board said, 45 is too young to give up.
2nd opinion from John Hopkins liver specialist is a good start to evaluate your son's case. Remember,nothing is impossible,hoping for the best and prepare for the unknown is part of this journey for this cancer.
Did he on Gemzar only or with other chemo agents like cisplatin or oxaliplatin or caboplatin .?
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What Chemo should be used for me?

I need help posting my son's history on this website. I don't know how to start on the introduction section so I was looking thru all the post on chemo. I have located a local doctor who could patch up some of my son's liver but there is no guarentee that the cancer will stop. I was told by his oncologist that Gemzar and Cisplaitin may stop the progressing on the tumor. I was told by the gasto doctor that there is no way that a surgeon would even attempt to remove the tumor because his cancer is stage 4, has lots of cancer in his liver, pancreas problems. He is on drugs constandly for his pain and he just wants to die. My son did 3 sessions - 2 were with cisplatin but his kidneys had problems so the last session was only Gemzar. I don't know where to turn. I have called his oncolgist and asked for a CT scan. She told me that my son would needf two more session before she would do a CT scan. I don't believe that the chemo has helped him as he has been sick since he started the chemo. I intend to donate money to research of this disease to John Hopkins, and to this web site. I would like my post be provided to everyone, but just don't how to do it.
Rachel

Re: What Chemo should be used for me?

Rachel go to our Home Page and scroll down to INTRODUCTIONS. Click on INtroductions. When the page flips to Introductions on the right side it will say "New Post" click on that and a space will appear to write your Intro. You can also copy it from the previous post and paste it to the new site.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Chemo should be used for me?

Rachel,

I posted this to you yesterday when you asked how to post under the Introdictions part of the site -

Welcome to the site. That would be great if you could introduce yourself to us all as that way your posts won't get lost in other threads. If you go to the "Introductions" board that is found under the Discussion Boards then you can introduce yourself there. Here is the link to the Introductions page -

http://www.cholangiocarcinoma.org/punbb … .php?id=18

Then just click on the "post new topic" icon on the top of the right hand side of the screen. After doing that it will bring up a new page, then just write a title to your new thread then post away! Hope that helps and lookin forward to reading your posts and hearing about your son

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.