February 25, 2012 at 7:42 am #58003
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.February 24, 2012 at 11:39 pm #58002
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.February 24, 2012 at 6:23 pm #58001
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!February 24, 2012 at 4:14 am #58000
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!February 24, 2012 at 12:02 am #57999
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?
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.February 23, 2012 at 11:16 pm #57998
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.February 23, 2012 at 4:36 pm #57997jim-wildeMember
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.February 23, 2012 at 4:42 am #57996pamelaParticipant
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!!!
-PamFebruary 23, 2012 at 3:58 am #57995
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!!February 23, 2012 at 3:54 am #57994
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!!!February 23, 2012 at 2:00 am #57993kris00jParticipant
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!
KrisFebruary 23, 2012 at 1:03 am #57992
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.
EliFebruary 22, 2012 at 5:19 pm #57991wallsm1Participant
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.
SusieFebruary 22, 2012 at 2:36 pm #57989
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
This is the protocol that I think you should use in your calculations:Quote: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
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.
EliFebruary 22, 2012 at 5:45 am #57990marionsModerator
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,
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