Re: New thread - am I getting enough????

OK, numbers were down on Friday's bloodwork... Off week last week, so should see numbers increase by this Friday and hit the Gem/Cis for cycle number 4. Gotta ask the ONC this Friday exactly how many cycles he thinks I should be doing. I have no clue, any suggestions for number of cycles for adjuvant chemo?? I'm pretty sure they are going to do adjuvant radiation with Xeloda as well, I'm going to ask about that as well.

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: New thread - am I getting enough????

Hi,
I do not know the answer;normally  CT scan every 3 months will tell the progress of the treatment;that means around the time of the cycle 6.
If they will do the radiation+Xeloda, please ask whether you need a chemo free period before the new treatment starts.
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: New thread - am I getting enough????

Hi Derin,

Re: the number of cycles

Several considerations:

1. ABC-02 trial used 8 cycles to treat nonresectable/metastatic cases. I think it's logical to conclude that adjuvant chemo should do less than 8 cycles.

ABC-02 is British Phase III randomized trial that proved Gem/Cis to be superior than Gem alone
http://www.nejm.org/doi/full/10.1056/NEJMoa0908721

2. Biliary Tract Cancer Treatment Protocols recommend the same protocol as in ABC-02 trial:

Systemic therapy for nonresectable or metastatic disease

Selected stage III-IV (T3-4, Any N, M0-1):

Standard-of-care front-line chemotherapy for patients with good performance status (ECOG score ≤ 2):

Cisplatin 25 mg/m2 on days 1 and 8 plus  gemcitabine 1000 mg/m2 on days 1 and 8; then every 21d for up to 24wk or until disease progression

Up to 24wk = Up to 8 cycles. Again, this is for nonresectable or metastatic cases. Adjuvant chemo should probably do less.

3. Before my wife started Gem/Cis chemo, our oncologist said he wanted to do 4-6 cycles. I asked him why not 8? (based on the info above). He explained that they usually do adjuvant chemo for up to 6 months, including 5FU/Xeloda chemo done concurrently with radiation. Marina did 5FU chemo-radiation for 2 months. That left her with 4 months to do Gem/Cis chemo. Enough for up to 6 cycles.

4. As I mentioned in another thread, we were on the fence about continuing adjuvant chemo past the 4th cycle. We met our oncologist last week. We asked him if more cycles is better. He said they don't have any data to support any particular number of adjuvant cycles. For what it's worth, we decided to do the 5th cycle. We are scheduled to do CT scan after the 5th cycle. No decision on the 6th cycle at this point. One cycle at a time...

Hope this helps,
Eli

Re: New thread - am I getting enough????

OK, had a quick trip to Jacksonville, FL Mon-Tue this week. Of course, when I'm gone, daughter blows a 103.8 fever... I get home last night, stay at the inlaws and went to get bloodwork this morning to see how I looked.

WBC  4.8 (1.9 on Friday)
Hgb  14.1 (13.5)
HCT  41.3 (38.7)
Plat  104 (76)
ANC  2.4 (.8)

Apparently my bone marrow is working just fine to bring the numbers back up... Dr. said I could be at home which is where I am tonite.  Sydney still has an upper respiratory infection, on Zpac, treating fever to bring it down until the Zpac kicks in... She's quarantined in her room (not that that's bad, TV and computer in there, plenty to do, and room service to boot!!). Gem/Cis Friday, hopefully she'll be better by Friday morning as her and her mom are supposed to go on a bus trip with the Venice Y to UF to watch a gymnastics competition.... My mom and brother are coming up for a visit from Ft. Lauderdale this weekend also. We shall see....

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: New thread - am I getting enough????

Hi Derin,

Sorry to hear about your daughter.  Seems like a lot of stuff going around right now.  I'm just getting over a bronchial infection, so I haven't slept in my bed for a month.  John has never really taken any extra precautions since he was diagnosed with ICC, but he had always been very healthy before.  Luckily, the kids don't get sick that often, although they're both stopped up right now.  I think our beautiful weather has something to do with it.  I'm glad that your counts went up and I hope your chemo on Friday goes well.  Sending well wishes to Sydney and positive thoughts to you,  PeggyP

Re: New thread - am I getting enough????

Fever is under control, her antibiotics are starting to work. Also, my CA19-9 was checked a week ago, it was 24.7. I'm guessing that's a good thing, it was checked on 1/9/12 and it was 34.6 I think...

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: New thread - am I getting enough????

Derin....excellent news.  Your CA 19-9 were in the normal range before and it continues to follow a downward trend.  Great to hear that Sydney is responding well to the antibiotics - looks life is taking on some normality. 
Hugs,
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: New thread - am I getting enough????

Well,  1 cycle of Gem done, 3 cycles of Gem/Cis done and this Friday is my official last cycle of Gem/Cis and then on to radiation/chemo! 2 more visits to the oncologist (Well, maybe 3, final one on the off Friday in 2 weeks), 2 more IV sticks, 2 more sessions with 10 bathroom visits, 2 more Friday nights without being able to get to sleep until 3am and that should be it!! Light at the end of the tunnel!!

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: New thread - am I getting enough????

Well, that was fun... 12 sessions with Gemzar being injected and the 12th one the nurse decides to use a hand located IV... Man that stuff was not comfortable going in. I guess my arm veins are bigger than the hand ones... Added saline at 1000 ml/HR to stop the burn/pain. Saline ran out with 10 minutes to go of Gemzar, pain kicked in again and I pushed the stop button on the pump myself until the nurse could come over and get me another saline bag! 

I'm officially at my last chemo session with Gem/Cis. About 2.5 hours to go, half way through the first dose of Potassium/Magnesium.  Numbers from today's bloodwork:

wbc     2.3 (4.7 last week)
hbg    12.2 (13.1)
hct     37.8 (40.2)
Plat    220 (218)
ANC    0.9 (2.5)

Well, gotta pee, talk to you all later!

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: New thread - am I getting enough????

So good to see you! Glad t hear you see a light at the end of the tunnel!! Keep it up.

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: New thread - am I getting enough????

Dear Derin, I am so glad you see the light at the end of the tunnel! Excellent. And now you can add Nurses Aide to your long list of accomplishments. Your catch of the week sounds good. I love Trout. Say, did you ever catch Gefilte Fish?

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: New thread - am I getting enough????

Gefilte fish is a mish mash of a bunch of fish, and we ate it at our Seder last week Fri and Sat! The trout was very good, actually used matza breading (still passover, no leavened bread until Sat PM) that I made and egg with a little cheddar on top and salt/pepper. Very good stuff!

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: New thread - am I getting enough????

Yes, I made Seder here and my Granddaughter who is away at College surprised me and came in. I took a crack at a Matzo Farfel Kugel  and ended up tossing it. Turned out like a brick! But my soup was excellent as were the Matzo Balls. When the youngest opened the door for Elijah we decided that Papa (Teddy) was coming in with him! Say, Derin, when members on here want advise for running to the bathroom we should advise Matzo. It will seal them up for a month!

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: New thread - am I getting enough????

Yes, it wil... that and chemo...

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: New thread - am I getting enough????

Well, officially done with chemo! Had a CT Friday last week prior to starting the radiation. This is the best part of the lab writeup: "Impression: Findings are not suspicious for tumor recurrence or metastatic disease." Gotta love that 7.5 months post surgery, that' for sure!!  I guess I'll start up a new post under Radiation once I start that up. Go tomorrow to radiation onc to get set up for the start of radiation, probably 2nd week of May as there should be 3-4 weeks between chemo and radiation...  BTW, my hand still freakin' hurts from that Gemzar, but at least it was the last time that it happened and not the first. Funny how that worked out, isn't 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: New thread - am I getting enough????

Glad you are done with chemo!!

FYI, I never had nausea with chemo but radiation caused a lot of vomiting towards the end.  Maybe talk to your Dr about going on a prophylactic proton pump inhibitor?  They are usually very well tolerated.
Or I would really pay attention to yourself during treatment and listen to your body.  Make sure you tell your docs right away if you are getting heartburn/acid reflux symptoms.

Take care!

Susie

Re: New thread - am I getting enough????

Hey, Derin, Mazel, Mazel. You are officially a Hero and a Survivor! Keep up the good work and the great news.

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: New thread - am I getting enough????

Darin:
I missed this post somehow! Congratulations on your wonderful news! And good luck and prayers going out that radiation is tolerated as well as your chemo was.

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: New thread - am I getting enough????

Got my first chemo today, the usual cis/gem but the dose is higher than anything else I have seen on this list: cisplaitin at 75 mg/m2 with gemzar at the usual 1000. Gemzar really got the vien hurting. Next time they'll try for a bigger vien. Nurse said she has even seen the cisplaitin dosed at 100mg/m2. She says at 25 or 50, no probable hair loss but at 75 highly likely. less side effects at the lower doses, easier on your kidneys. what I really don't want to lose is my hearing! I'm a musician!

Good luck with your adjuvant therapies. They probably don't need to be as high and of course, they are poison. Today I felt like the Norman Invasion - - every bit of firepower that could be mustarded was thrown at those beaches and the enemy was clueless.

Keep on hoping on.

Re: New thread - am I getting enough????

Holly, I liked your comparison of the chemo attacking to that of the Normandy Invasion! Being that winter is around the corner you can get some really cute winter caps to hide any hair loss if it should happen at all. Of course you could come out this as the Bionic woman.

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: New thread - am I getting enough????

Holly....we have reports of hair thinning, but nothing on loss of hearing caused by chemotherapy. 
The stinging and burning due to Gemzar though has been discussed.  Some recommended a warm cloth placed on the site prior to the infusion of Gemzar and/or slowing the rate of infusion.  I suppose you don't have a port placed, right?
Hopefully others will chime in on this one.
Hugs to you,
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