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

OK, posting a new thread here. I've had 4 sessions of chemo, 2 with Gemzar only, 2 with Gemzar and Cisplatin. Literally no side effects whatsoever. I take Emend the day of chemo and 2 days afterwards plus the anti-nausea that they give me with the IV, but have not taken Zofran yet for the past 6 weeks.

Brief history: 40 yrs old, CC in the bile duct only, resection 3/4 of the liver (right lobe complete, half of left), gall bladder and all of the bile duct, reconstruction of the bile duct with small intestine. 9/14 surgery date, feeling great so far. Got down to 165 lbs after surgery, back up to 194 and doing great in the gym and with cardio as well as work.

My question, chemo has been adjuvant only as a preventative measure, the cancer was ONLY in the bile duct, no metastasis anywhere else. Am I getting enough adjuvant chemo??? I have had no side effects whatsoever at this point, will they get worse? Haven't lost any hair yet, but I assume that this will happen eventually.  I am out of town while posting this (in Houston) but can post what chemo I am receiving Thursday evening or  Friday during my next chemo session once I can get a copy of my records.  Just a bit confused as to why I'm doing so well (again, NOT THAT I'M COMPLAINING!!!)  yet hear so much about adverse reactions to Cisplatin and Gemzar wondering why it isn't happening to me... Thoughts/comments? Welcome all at this point!!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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.....Cisplatin on it's own is not known to cause hair loss; Gemzar may cause thinning or more.  You may not experience anything, only for your hair to grow slowly.  Sounds great to me. 
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: New thread - am I getting enough????

Derin,

You can calculate chemo doses you are expected to receive, and then compare your numbers to what your doctors prescribed. If you find a big discrepancy, talk to them about it.

(you will need to create a free account to access this link)

Biliary Tract Cancer Treatment Protocols
http://emedicine.medscape.com/article/2003836-overview

This is the protocol that I think you should use in your calculations:

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

m2 refers to square meter of body surface.

You can use this page to calculate your body surface and the doses:

Body Surface Area Calculator for medication doses
http://www.halls.md/body-surface-area/bsa.htm

I followed the same steps to calculate my wife's expected dose (she is on gem/cis as well). My numbers matched very closely what our oncologist prescribed.

Best wishes,
Eli

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

Derin,

I've read over and over again that just because you don't get the side effects doesn't mean you aren't getting enough chemo or the right chemo.  I had 6 doses of Gem/Cis after resection and I had a low WBC, but no other side effects.  Then I went through chemo radiation and then 3 more doses of Gem/Cis.  Radiation made me really sick, but chemo isn't bad at all.   I don't have any GI issues but it has been destroying my counts more this time and I am really anemic.
Everyone is different.  I think chemo builds up, so the more you get maybe the harder it is on you.  Hopefully you will continue to cruise through this.

Take care

Susie

5 (edited by eli Wed, 22 Feb 2012 19:03:47)

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

Derin,

As I mentioned, my wife is also going through Gemcitabine / Cisplatin chemo. Three cycles done, three more cycles to go. Each cycle is three weeks: two weeks on, one week off.

Similar to you, she has had very few side effects. The worst one is neutropenia: low neutrophil counts. She has to give herself Neupogen shots after each chemo session. It appears that Neupogen causes more side effects than chemo itself.

Our oncologist said that my DW is very lucky to have so few side effects. Most of his patients have a hard time with Gem/Cis cocktail. He said that Gem/Cis is usually worse than chemo-radiation. In my wife's case, it's the opposite. Chemo-radiation made her *very* sick. Gem/Cis has been a walk in the park in comparison. KNOCK ON WOOD.

Our oncology nurse said that nausea/vomiting do NOT build up. Patients who don't experience them right from the get-go usually stay nausea-free throughout the entire course. Other side effects, such as bad blood counts and hair loss, do build up.

Re hair loss:

My DW started to lose hair after the first cycle. The last two cycles have been pretty bad in terms of hair loss. Her hair is very thin now, especially at the top of her head. On the bright side, her hair thins out evenly, so it still looks okay. She doesn't have any obvious bold spots like some patients in the cancer centre.

Hopefully you will be able to stay free of side effects the rest of your chemo course.

Best wishes,
Eli

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

Derin:
I can only comment on the Gemzar part. I received Gem/Ox. I had to stop the Oxaliplatin part because of side effects. They said I would feel like I had the flu after Gemzar but I never had any side effects. One I did have that I am unsure which chemo caused: that was a little thinning of my hair. Very little. I had a great head of hair before chemo. I still have more hair than the normal person. And my blood counts were low. But I never felt sick from Gemzar, just possibly a little more tired than usual.
Hope you stay healthy! As has been already stated: everyone react differently to chemo. Maybe because you work out so much and are otherwise healthy you will NOT have side effects. I'm hoping for that for you!

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

Kris,
From your mouth to G_d's ears!@! Had a great week working out, hit cardio pretty heavy so far for 3 days, did intervals. 1 min at 2mph, 30 sec at 7mph and increased the upper speed by 1mph until I hit 11mph and then cycled back down by 1mph to 5 so it took me about 16-18 minutes. Did that after the weights all 3 days this week so far (in Houston by the way) so I'm feeling pretty good.  My hair hasn't even started to disappear yet, and it doesn't look like it is thinning yet either. Oh well, when it goes, bring on the clippers!!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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????

Eli,
Thanks for the calculation links, I am out of town in Houston so I don't have copies of what they are giving me, I fly home tomorrow. When I get there, I'll pull out my docs and run the calcs to see how the calculations compare to what I'm getting. Thanks for the post, it's informative and very helpful!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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,

My daughter is on Gem/Cis and 5FU. She has had no major problems with three chemo drugs. She felt a little queasy the first few rounds, but nothing major. She has had to have her Cisplatin dose lowered a few times because of low platelet counts. She has also lost all of her hair and now has little, short what I call ducky fur. She looks really adorable though. She gets Aloxi in her IV before chemo for nausea that lasts 3-5 days. She also takes Compazine for a few days after chemo. She is coming up on her 12th round of all of this chemo and is doing very well and her tumors are shrinking as of the last MRI. She will be having another MRI and full body CT on March 8. Hopefully, things are still looking good. Her doctors are all amazed at how well she is doing. I think you and my Lauren are two of the lucky ones that don't feel cruddy from their chemo. I say YAY to that!!!

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

Derin, Gemzar is pretty benign stuff.  Cisplatin is the real butt kicker, however, in terms of toxic effects.  I asked why I only got adjuvant Gemzar, and my onc said, given my cardiac history, she knew I wouldn't tolerate it at all.  Your onc should be experienced with cc, if not I would find one pronto.  This is why cc patients should always try to seek out a major cancer center with cc experience.   I had an onc at the hospital where I had my resection, but all chemo was done locally (I live about 6 hours from the hospital).  I have continued to see the onc at the resection hospital for all followups and scans.  She has extensive cc experience, which is seldom the case with smaller or regional hospitals.  Even at that, I doubt she sees more than 30 to 50 new cc patients a year, given that there are only ~ 2000 or so new US cases per year.

BTW, Gemzar kicked my butt early on until they got thr dosage and cycle right.  After the first months or so, it wasn't too bad, other than the 24 hours right after infusion.

Once you have an onc you completely trust, you just have to go with his judgment.  Good luck.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

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

Eli,
I am currently getting 1600mg of Gemzar and 50  mg of Cisplatin. They are following the protocol dose of 25mg/m2 for cisplatin, but for the gemzar are using 784.3mg/m2. Not sure why it is a bit lower, I'm going to have to ask. My surface area was 2.08 m2 also per that link you sent.

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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...

12 (edited by eli Thu, 23 Feb 2012 18:45:27)

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

Derin,

That's 20% dose reduction compared to the protocol I linked. 20% is a big difference. I don't know how to explain it. Perhaps they are following a different protocol.

For the reference:

My wife is 5'3" and 115 pounds. Surface area 1.52 m2. Expected gemcitabine dose: 1000 mg/m2 * 1.52 m2 = 1520 mg. She was prescribed a bit more. 1540 mg if I remember correctly. That's not too far off from your dose.

If I were you, I would definitely bring this up with your oncologist. The title of the thread is right on the mark. Are you getting enough?

EDIT:

Okay, I have one idea about reduced dose. You had part of your liver resected. I know the liver grew back, but is it the same size as before? Perhaps they are concerned that your liver can't handle the full dose.

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

I think it still may be a bit smaller than normal. I will ask about the reduced dose to see what they say about it tomorrow morning. I'll post what he says as I sit in the chair!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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????

OK, sitting in chemo now, drugs done, getting last 2 bags of magnesium/potassium, about 45 minutes to go. Spoke with ONC today, and he said the first 2 doses I got of Gemzar when it didn't include the Cisplatin brought my white blood down almost as low as he wanted to see it. So although the protocol is 1000mg/m2, he would rather have a bit lower of a dose and be able to give me the 2 doses back to back Friday's and then the off week versus having levels go so low that I can't get the chemo... However, me and my big mouth asking the question today, they bumped me to 1700mg. I think per my calculations I should have 2080mg based on the math (2.08m2 surface area) so I'm still a bit lower. Since this is adjuvant and there is no active cancer present, no tumors, etc. I feel that I'm getting sufficient quantities. The Cisplatin is spot on for the amount based on the protocol. He also said that he has a lot of experience with Gemzar and has yet to see someone get the protocol amount without having levels drop at some point which would cause missing a dose so that justifies why I'm a bit lower also. Anyway..... that's what I found out this morning!!! Thanks for the comments everyone, it's appreciated!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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, your ONC sounds like he knows what he is doing. Reduced dose is part of his game plan... that's reassuring to hear.

Just for the sake of comparing notes, I will mention that my wife's ONC has a different philosophy.

My wife's white blood counts dropped quite low right after the first Gem/Cis cycle. Our ONC put her on Neupogen shots. Thanks to Neupogen, she is able to follow the chemo schedule at the full dose. 3.5 cycles complete, no missed days so far.

I suspect that both approaches are valid and have their advantages and disadvantages. Neupogen has its own controversies, that's for sure.

As we discussed just the other day, we have to trust our doctors.

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

Very true Eli. I think that my reduced dose may also have something to do with the fact that we're not trying to shrink tumors also... technically I'm clean, but who the heck knows! Me and my big mouth, I asked about it and ended up getting 100mg more Gemzar, 1700 instead of 1600. Cisplatin is the full dose too.

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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, I'm sitting in chemo, labs from this morning:
wbc   2.6 (5.0 last week)
Hgb   13.9 (14.1)
hct     42.3 (44.2)
Plat    230 (191) (went up again after chemo...???)
ANC   1.0 (2.6)

Even though these numbers are similar or better than a previous 2nd day of cycle report, they want me back on Tuesday to check blood levels again. I took off this week from the gym to start builidng our cabinet for the murphy bed in the guest room, that's the only change I've done this week.  I've felt a little more tired than usual, but just yawns and not even remotely "I can't move I'm so tired" at all.

Gemzar done, vein from last weeks treatment got a little hardened so we used the right arm for the first time this week (that's 5 treatments in the left arm, 1 in the right so far!). That's the first time any vein had a bad reaction, but the first time Gemzar was 1700 versus the previous 4 at 1600. Hope everyone has a great weekend, since I can't sleep until late, I'm planning on a late night fishing expedition like last week. Got 3 crappy ladyfish and one nice 24" snook last week, hoping for a spotted sea trout tonite so we can have some dinner this weekend!!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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:
How I wish I had your veins!! I went with a port after 1 treatment with Gemzar. 3 veins in 90 minutes.
Glad to hear your numbers are still good and you are feeling well. Good luck with the fishing expedition. I hope you get that trout.

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

I've never heard much discussion about port or using IV, I figured I'd try the IV and see how I handled it. I only had one very small issue with the Gemzar about 3 weeks ago for only 4-5 minutes of the 30 minute treatment but it was in no way 'unbearable', just slight irritation and that's it. Nothing today either and the cisplatin is flowing in! Then 500ml of Magnesium and 500ml of Potassium and I can go home (after I pee 5 more times... smile )

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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 doing so well, Derin. Keep up the good work, Superman!

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

My veins did NOT like the Gemzar. They had to move the IV 2x until they found a vein big enough to handle it. And I had track marks for over a week. You could actually see the bruised vein all the way from my elbow area to my shoulder. The Gemzar was nasty painful, and I immediately scheduled to get a port! Much easier on me.
Kudos to anyone who can handle the chemo without getting a port. I wish I could have. But I'm not surprised I couldn't do it: I had 10 IVs in the 10 days I was in the hospital last year. And the first IV lasted 3 days. One of them only lasted about 1.5 hours before it blew. I figured with that kind of track record, I wouldn't last long with chemo. And since the "pre-port" days started, I've actually lost 2 veins in my arms.

I hope you don't have too long of a drive so your bladder holds up! 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: New thread - am I getting enough????

Derin-Glad chemo isn't wiping your butt!!! I can't even do a blood draw with out a minium of 2 sticks. I am amazed at you having  portless chemo. I got a blood infection during my second transplant stay and all foriegn objects were removed from my body, so there went my port! I was more upset by that then being back in ICU! I have no veins, so my port was a gift from God. I could have all blood draws thru my port, it was toooo easy!
Can't let my husband Jeff see your fishing reports, he sleeps with the Brass Pro Store add under his pillow!! LOL! We have 2 weeks till our camper opens at Kentucky Lake and he is bass fishing!
Lots of prayers-Cathy

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

Well, they were concerned Friday about my bloodwork, so had me come in today. Here are the results...

wbc   3.4 (2.6)
Hgb   12.9 (13.9)
hct     40.4 (42.3)
Plat    112 (230)
ANC   1.9 (1.0)

I'm still confused. I thought chemo was supposed to pound the numbers down, yet the only thing that went down was the Platelets... Oh well, off week this Friday, next week we'll hit it again!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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...generally the break from chemo will help bring those numbers back up.
Enjoy your time off.
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????

Marion,
That's what I thought. But I got chemo 5 days ago and the bloodwork yesterday showed an increase in all of my numbers except platelets, hence the confusion on my part... But I'll take it, that's for sure!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
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...