Eli
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Marion, no personal experience. This is just an idea for Pamela to discuss with Lauren’s oncologist.
On the flip side:
Have you heard anything negative about chemo sensitivity testing for CC patients?
Pamela,
Is Lauren’s tumor accessible for a biopsy?
If it is, ask your oncologist about Chemo Sensitivity and Resistance Assays testing. Cell Culture Drug Resistance Testing is another name for the same test.
If your ONC is open to this idea, you will need to locate a lab that offers this test (hospitals don’t do it). The lab will tell you the size of the biopsy sample they need. If the hospital cannot extract the required amount of tissue, chemo sensitivity testing is not feasible.
A short summary of how the test works:
Quote:When a patient has an infection, doctors often send a sample of infected blood or tissue to a lab where they can grow the bacteria and see which antibiotics are most effective (called Bacterial Culture and Sensitivity Testing). Chemosensitivity testing is an attempt to do something similar for cancer; fresh samples of the patient’s tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. It is highly desirable to know what drugs are effective against your particular cancer cells before highly-toxic agents are systemically administered to your body.…
Chemosensitivity testing might help you find the best option, or save you from fruitless additional treatment. Another situation where chemosensitivity testing might make particularly good sense is in rare cancers where there may not be enough experience or previous ideas of which drugs might be most effective.
You can read more details here:
http://csn.cancer.org/node/145884Derin, 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.
My wife experienced quite a bit of pain the first few days after her port went in. She had to take Tylenol on a regular basis. Once the surgery site healed, the port has been trouble free.
The most common chemo drugs go through port:
Gemcitabine
Cisplatin
Oxaliplatin
5FUOne notable exception:
Capecitabine (Xeloda)
It’s a pill that you take at home.
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IMPORTANT:
When port is not being used, it has to be flushed once a month with saline solution. If you ever go on a long break between chemo treatments, remember to arrange the flush.
To help Percy, I will post all chemo protocols listed in NCCN Treatment Guidelines.
Unresected And Metastatic Cases
Phase III clinic trial supports this protocol:
gemcitabine + cisplatin
Phase II clinic trials support the following protocols:
Combination protocols for patients with good performance status
gemcitabine + oxaliplatin
gemcitabine + capecitabine
capecitabine + cisplatin
capecitabine + oxaliplatin
5FU + oxaliplatin
5FU + cisplatinSingle agent protocols for patients with poor performance status
gemcitabine
capecitabine
5FUResected Cases
There are no Phase III clinical trials to support chemo protocols for resected cases.
Phase II clinic trials support the same protocols as listed above for unresected cases.
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The protocols refer to drugs by their “proper” medical names.
Here are the trade names of the same drugs:Gemcitabine = Gemzar
Cisplatin = Platinol
Oxaliplatin = Eloxatin
Capecitabine = Xeloda
5FU = Adrucil, Carac, Efudix, Efudex, FluoroplexDerin,
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.
LeeAnn,
The way I read your story, your oncologist got spooked by seeing two relapsed CC patients so close to each other.
As others have said: CA19-9 tumor marker going from 94 to 74 to 121 doesn’t mean that your cancer is back. CA19-9 test is not fool-proof.
It’s good that you are scheduled to do both PET/CT and CT. The combination of two scans is fairly accurate at detecting recurrence.
Best of luck with the scans.
Diana:
Best of luck with the surgery!
Jim:
My wife’s incision got infected too. Radiation and medical oncologists had the same firm stance: chemo radiation is a NO-GO until the incision is fully healed. The surgery was on July 4th. Chemo radiation started on Sept 12th. More than two months delay thanks to the wound infection.
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,
EliMarion, thank you for posting this.
This warning is very relevant to CC patients after Whipple. They are very likely to be prescribed Proton Pump Inhibitors, to protect the surgical connection between stomach and small intestine.
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-overviewThis 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
http://www.halls.md/body-surface-area/bsa.htmI 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,
EliDear SharonLee,
I am very sorry to hear about your loss. Please accept my sincere condolences.
Your mom is now at peace and without pain. I hope you can find a little bit of comfort in that.
Eli
Cathy,
You mentioned that you have 3 scans every 6 months. Are they all full-body scans? Chest, abdomen and pelvis?
Or do they pick and choose? For example, something like this:
CT: full body
MRI: abdomen only
ultra-sound: abdomen onlyBest wishes,
EliP.S. Please note that I updated my previous post after you posted yours.
Hi JHagopian,
Take a look at this paper:
Diagnostic performance of contrast enhanced CT and 18F-FDG PET/CT in suspicious recurrence of biliary tract cancer after curative resection
http://www.biomedcentral.com/1471-2407/11/188The research was done in South Korea. CC is more common there than in the Western world. They have a lot of experience treating CC patients.
They followed up CC patients in remission. When they suspected a recurrence (because of abnormal liver functions, elevated CA19-9 or other symptoms), they compared the performance of PET/CT scan and regular CT scan.
Here’s what they found:
Quote:ResultsAmong the 50 patients, 34(68%) were confirmed to have a recurrence. PET/CT showed higher sensitivity (88% vs. 76%, p = 0.16) and accuracy (82% vs. 66%, p = 0.11) for recurrence compared to ceCT, even though the difference was not significant. The positive (86% vs. 74%, p = 0.72) and negative predictive values for recurrence (73% vs. 47%, p = 0.55) were not significantly different between PET/CT and ceCT. However, an additional PET/CT on ceCT significantly improved the sensitivity than did a ceCT alone (94% [32/34] for PET/CT on ceCT vs. 76% [26/34] for ceCT alone, p = 0.03) without increasing the specificity, positive predictive value, and negative predictive value.
Conclusions
18F-FDG PET/CT alone is not more sensitive or specific than ceCT in the detection of recurrent BTC after curative surgery. These results do not reach statistical significance, probably due to the low number of patients. However, an additional 18F-FDG PET/CT on ceCT significantly improves the sensitivity of detecting recurrences.
The way I read it:
* PET/CT scan alone was slightly better than CT scan alone, BUT… the difference was not statistically significant. Probably because they didn’t have enough patients.
* They proved that doing PET/CT *in addition* to regular CT improves detection sensitivity. In other words, two tests done together reduce the number of “false negatives”.
Best wishes,
EliP.S. 18F-FDG refers to the contrast solution injected before PET/CT scan.
