Eli
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Percy, a big thank you for your feedback. I appreciate it.
Yes, I know, the chance of recurrence is very high. That’s why I’m leaning towards more cycles of chemo. Will two extra cycles make a difference? No one knows. It’s a tough choice.
Lainy, we don’t know what the ONC will say. I guess it partly depends on what the blood tests will show on Friday.
I know this though… when he doesn’t have a strong opinion one way or the other, he is very careful not to steer us in any direction. He usually presents the options and leaves the choice to us.
Taking a little break is a sound idea. I doubt I can sell it to Marina. She wants to resume normal life asap, go back to work, etc.
Lainy, as always, I appreciate your feedback.
Pamela,
It’s not embarassing at all. It’s just par for the course when you deal with CC. My DW has bowel problems of some kind *every* chemo cycle. This last cycle, she also had painful cramps.
Try Proctosedyl ointment for sore behind. Here in Canada it requires a prescription.
For painful cramps, we have an Rx for Buscopan (an antispasmodic medication). The brand name might be different in the States. The generic name is Butylscopolamine.
Hi Lisa
Can you please clarify what you mean by maintenance chemo?
I’ve seen two uses of this term.
1. Chemo done after surgery. The proper medical term for this kind of chemo is Adjuvant chemo. Consolidation chemo is another term for the same thing.
Adjuvant/Consolidation chemo is usually recommended when the surgery results in positive margins or/and positive lymph nodes. That said, some patients receive recommendation to do adjuvant chemo even though their surgery is clean.
2. Maintenance chemo can also mean a long, continuous chemo prescribed to patients in remission. You can read more about it in this New York Times article:
http://www.nytimes.com/2009/07/21/health/21canc.html?pagewanted=all
CC doesn’t have an established maintenance chemo protocol. I’ve never heard of CC patients doing maintenance chemo. I’m not sure why. My guess is, most CC chemo protocols are too toxic to do on a continuous basis. Another reason (mentioned by Marion) is lack of clinical trials to prove that maintenance chemo is of benefit to CC patients.
The only explanation that makes at least some sense to me:
Husband and wife ate the same fish meal (or many fish meals) with liver flukes. Both contracted liver fluke infection. Liver fluke infection is a high risk factor for CC.
Any other explanation seems extremely far-fetched to me.
Well, so far so good. Marina feels much better this time. Knock on wood and fingers crossed.
She felt a bit of nausea yesterday after chemo. Compazine and Zofran took care of that. No nausea today in the morning. No headache. She slept 5 hours in a row at night, which is excellent for the first night after chemo & steroids. Her energy level is pretty good. Hopefully the rest of the weekend stays that way.
Chemo nurse thought that last weekend’s symptoms were caused by Compazine. She talked to oncologist on call and got us prescription for Reglan. To be taken in between Zofran, instead of Compazine. I read the side effects of Reglan and they sound just as bad as side effects of Compazine, if not worse. I think we will stick to Compazine for now. Better devil you know.
The full text of the study:
Hypnotics’ association with mortality or cancer: a matched cohort study
http://bmjopen.bmj.com/content/2/1/e000850.fullMonday was big improvement over the weekend. Today is even better. Marina feels back to normal. She drove our kid to school and then went grocery shopping. Just to buy treats for herself!
Susie and Percy, thank you for your detailed replies.
She mostly complained about general feeling of being very sick. Not so much about nausea or headache in isolation. Her nausea was (relatively) mild compared to what she experienced during radiation. I’m not sure if treating nausea and headache will make a huge difference (but I will definitely look into your suggestions!)
Susie: she does get Zofran & Decadron IV before chemo. She also takes Zofran pills after chemo. One pill in the evening the day of chemo. Two pills morning/evening on days 2 and 3. One last pill in the morning on day 4. She also takes Prochlorperazine (Compazine) in between Zofran, if needed.
Percy: hospital checks potassium and magnesium before each chemo session. She received magnesium IV a few times in the previous cycles. She didn’t need it this last session.
Thank you again for your ideas.
mydadrocks,
I did a quick search using Google Scholar:
http://scholar.google.com/scholar?q=cholangiocarcinoma+FOLFOX
Found two studies on Page 1 that seem relevant:
[2010] Preliminary phase II results of oxaliplatin, 5-FU, and leucovorin in advanced biliary tract cancer.
http://meeting.ascopubs.org/cgi/content/abstract/28/15_suppl/e14507[2002] Oxaliplatin, fluorouracil and leucovorin for advanced biliary system adenocarcinomas: a prospective phase II trial
http://www.nature.com/bjc/journal/v87/n7/abs/6600543a.htmlI haven’t reviewed google search results beyond page 1.
Searching PubMed for the same terms doesn’t return anything. Odd!!
EDIT:
The second study is available on PubMed:
http://www.ncbi.nlm.nih.gov/pubmed/12232749Marion:
CS/CR test cannot rely on blood testing. It requires a fresh tumor sample.
I agree with you that, for most CC patients, it’s hard to take advantage of chemo-sensitivity testing. Patients undergoing resection are very unlikely to have the information about the test. If and when they learn about the test, their resected tumor is no longer fresh, so it can’t be tested. Patients not eligible for resection face the difficulty of obtaining biopsy that meets testing requirements.
That said, a small minority of CC patients might be able to undergo the test.
You are right we only have a few protocols to choose from. But, we do have a choice…
gemcitabine + cisplatin
gemcitabine + oxaliplatin
5FU or capecitabine + cisplatin
5FU or capecitabine + oxaliplatin… and a few others, less common ones. Today, there is no way to tell which protocol is the best for the given patient.
My wife is doing Gem/Cis chemo. Is it the best protocol for her? We don’t know. Is it possible that Gem/Ox would be a better choice? Or 5FU/Cisplatin? Yes, it’s possible. We have no way to find out.
CS/CR testing promises to change that. The sales pitch is extremely appealing. Can they deliver on their promise? I don’t know.
Susie:
I don’t know much about insurance coverage in the US (remember, I’m in Canada).
Chemosensitivity / Chemoresistance test that I described is called ChemoFit. You can read more about it here:
http://act-inc.net/index.php?cID=94
On the right hand side, there is a link to Reimbursement Information. The cost is $2500.
Marion,
Chemo-sensitivity / Chemo-resistance testing does *not* use tumor markers. At all.
Here’s how the test works:
1. the lab receives *fresh* tumor sample from surgery or biopsy.
2. the lab grows live cancer cells in a tube.
3. the oncologist tells the lab which chemo combinations to test.
4. the lab applies the requested chemo cocktails to *live* cancer cell cultures.
5. the lab measures the response of *live* cancer cells.
As you can see, they don’t need to know molecular blueprint of the tumor. It’s an experiment in the dish. By observing the response of live cancer cells, they can tell the oncologist…
Chemo protocol A worked well
Chemo protocol B was ineffectiveThey don’t need to explain why protocol A worked or why protocol B failed.
That’s the sales pitch. I don’t know how well these tests work in practice.
