2000miler
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I just realized I never thanked everyone for responding to my post and providing all the useful information, so thank you very much.
To continue my wife’s story, we met with the Ochsner oncologist on October 22nd and she told us that she was prescribing four cycles of the GemCis regimen followed by 5 weeks, M-F, of chemoradiation with 5FU and if she didn’t qualify for the radiation, it would be six cycles of GemCis. We saw the radiation oncologist the next week and she was accepted for radiation, so the plan was in place.
A port was installed, with an accidental punction of a lung, and chemo was started on 11/19/12. As of 1/29/13, Margaret has finished day 1 of her 4th cycle of GemCis. She has skipped one week during the third cycle because of a low mature while blood count. She gets GemCis on day 1 and day 8 and a Neulasta shot on day 9. She’s had a fever one time in each cycle which required going to the ER three time so far. Ochsner sets a temperature limit of 100.4 for trips to the ER by chemo patients. The first trip was 13 days after the cycle 1 first chemo day, her temperature got to 100.6 at 11:00 pm. By the time they checked her at the ER it was down to 99.9 and they asked her what she wanted to do, and she chose to go home. The second trip was at 11:30 pm,19 days after the second cycle first chemo day. Her temperature got to 101.3, they put her in a bed in the ER, ran a bunch of test to find out what was causing it and decided it was a urinary tract infection. We came home at 4:30 am. The third trip was at 6;00 pm, 16 days after the third cycle first chemo day, and her temperature got to 102.7. They put her in a bed in the ER, ran a bunch of tests again, couldn’t find anything, so they put her in the hospital for two days. After the two days they still didn’t know what it was but decided it must be cholangitis.
The fevers are getting worse with each cycle. The oncologist, who we saw Monday, was getting ready to call quits to the chemo but after she saw how great Margaret looked, she decided to go with another round of chemo and she’s playing it day by day now. She did say that she was calling off any radiation because it’s hard on the liver, but I guess we’ll cross that bridge when we get to it.
Does anyone know what causes these fevers? I asked her oncologist if it could be tumor fever, and she said no, that if it was, the fevers would occur every day.
Bruce
My wife’s surgeon is Dr. Trevor Reichman at Ochsner Hospital in Jefferson Parish, LA, right outside New Orleans. An Ochsner Emergency Room doctor ordered a CT scan on my wife late at night, saw the tumor in the liver and an enlarged lymph node close to it, and put her in the hospital. The next day she had all kinds of doctors visiting her, including about a dozen residents from Australia. Dr. Reichman called it CC right from the beginning without the benefit of a biopsy. I was impressed with him because he did liver transplants, had a PhD as well as an MD, and authored papers on liver resection.
Thanks for clearing that up Holly. That’s fantastic that you had such a great response to just four cycles of GemCis. My wife has finished three cycles but hers is adjuvant therapy since she was resected with R0 results but with one positive lymph node.
Did the doctors think there may be some connection between your being cHCC-CC, instead of pure CC, and the great response?
Incidentally, according to the AJCC Cancer Staging Manual, 7th ed., the staging for IHCC with multiple tumors, with or without vascular invasion, no regional lymph node metastases, and no distant metastases is T2bN0M0 and Stage II. The staging for my wife, who is IHCC, solitary tumor without vascular invasion, one regional lymph node metastases, and no distant metastases, is T1N1M0 and Stage IVA. She would have been Stage IVA even if she had multiple tumors in her liver. And yet, they resected her right away. it just seem strange that they would resect a IVA and deny resection to a II. Eventually, I should be able to calculate survival probabilities for Stage II without resection vs. Stage IVA with resection, but I need more data in the database to make the answer statistically significant.
So far I have death dates for 57 cc patients. Of these I was able to determine that 22 had resection surgery and 30 did not. The median survival was 2.27 years (0.63 yr. – 7.80 yr.) for those having resection and 0.98 year (0.02 yr – 2.78 yr.) for those who did not.
Considering that those who could not have surgery probably had more advanced cc than those who could, I looked at staging. Seven of those who had no surgery were classified stage IV and one was classified IIIC to IV. This latter case was diagnosed in Aug. 2011, when the 7th edition of AJCC Cancer Staging Manual was in effect. The patient had IHCC and there is no stage IIIC or IV for IHCC, only I, II, III, IVA and IVB. The surgeon evidently staged the patient based on the 6th edition of the Staging Manual which was out of effect on 1/1/2010.
Staging was reported for three patients who had surgery. One was stage I, one stage IIA, and one stage IV, enforcing the expected outcome that those who could not have surgery had more advanced cases of cc.
I will eventually calculate the stage for those patients who have provided the required TNM data but no stage so that the impact of surgery on advanced cc cases can be estimated.
Holly – I just finished reading all your posts. I am not a doctor, but it appears to me that the reason you are going to have surgery on the 31st of this month is not because of any shrinkage of your multiple liver tumors, but because you were industrious enought to find a surgeon, Dr. Tomoaki Kato, who said “yes” to replace a surgeon, or several of them, who said “no.” I noticed that after three cycles of GemCis, your tumor markers came down but there was no mention of shrinkage. Also, you wrote “All said that once there is intrahepatic metastasis, there is disease throughout, even that which cannot be seen on scans,” however Dr. Kato found a section of your liver which can be left in place after the resection. Evidently he was not worried that this section could contain cancer cells which could not be seen on scans.
According to the surgeon who resected my wife’s liver, at least 20% of the liver must be left to insure it growing back. I believe that Dr. Kato would have resected your liver even if you hadn’t had chemo. In fact, I think he would have preferred that.
We were lucky because my wife’s first surgeon said “yes.” Then, at my daughter’s urging we got a second opinion from another surgeon and he and his board said “absolutely no,” fearing that they would have to cut out more than 80% of the liver and it wouldn’t grow back. They suggested a procedure to grow the healthy lobe and start chemo treatments to shrink the tumor. My wife’s first surgeon was totally against this saying they would have to do the treatments for at least a month and then he would have to wait a month after the chemo was stopped before he could operate. We ended up getting a third opinion from the first surgeon’s mentor, who agreed with him, and the operation proceeded within a week, ending with an R0 resection.
I have since entered all of your data in my database. If I had done this before I started this topic, I would have used Dr. Kato as another example of a surgeon who works around this multiple liver met excuse for not operating.
Good luck on your surgery.
Bruce
The “many little ones throughout the liver” may have been the deciding factor, but because of her statement, “once there is intrahepatic metastasis, there is disease throughout,” I think they would have come to the same conclusion with just the 7 cm main tumor and two smaller ones, which is similar to what you had.
Holly22a, did your surgeons address what they would have done if the “many little ones” were not present?
I was extracting information on “Neill,” husband of Cindy Russell for a foundation database, when I ran across references to the controversial Dr. Jerome Canady. Neill posted on these boards from 10/31/07 – 11/27/07 and on his own web site. According to him, Dr. Canady used his invention, the Plasma Beam Catheter to remove every vestige of cancerous tumor at the cellular level that had been wrapped around the arteries and veins of Cindy’s liver. Doctors from John Hopkins, Mayo Clinic, and Pittsburg UPMC had said she was inoperable and gave her no more than 6 months to live. The case was reported on television news. Cindy passed away on 16 Nov 2009, having survived 2.35 years since her surgery and 2.69 years since her diagnosis, well over her 6 month expectation.
Dr. Canady presently is associated with the Canady Surgical Group in Washington, DC. He refers to his invention now as a Plasma Surgical Scapel, with scalpel spelled scapel. I couldn’t find any other information on this device by Googling. However, there is information on a device with a similar name and similar purpose, the Micor-Plasma Surgical Scalpel, which is discussed in a NASA Tech Brief for 11/1/11 and in more detail at:
http://contest.techbriefs.com/component/content/article/1650
There are 9 others in my partial foundation database that had surgery for a Klatskin tumor with clean margins and no mets (R0). There are 3 of these 9 for which I have data on recurrent cancers. Times between surgery and recurrence was 0.54, 0.62, and 3.27 years. None of them had surgery for the recurrent cancer.
I thought about posting a thread asking for data, but “trying to help” beat me to it. She posted “Patients’ Questionaire” on Nov 11th and only got 5 responses. I started off including everyone who responded to my previous posts and the top 10 posters on the spreadsheet and still 74 of the 100 on the spreadsheet haven’t posted in over a year.
At this point the spreadsheet has 77 columns. I am including data on neoadjuvant, adjuvant, & systemic treatments and data to calculate recurrence and survival probabilities. The only mutation info that I have so far is from LindaR, whose husband’s tumor was analyzed by Foundation Medicine and found to have 3 genetic mutations. After obtaining this information, the experts decided to remain with his treatment, FOLFIRINOX, unless it proves to be ineffective. LindaR is on my spreadsheet because she responded to one of my recent posts. Most of the people on it are first posted in 2006, and tumor molecular analysis may not have been that popular then.
Bruce
Thank you Lainy for the advice on Medicare and PET scans. Maybe my wife’s oncologist has never really pushed to get a PET scan for CC and is only repeating what others have told her. I’ll mention that your husband got approval from Medicare for CC and perhaps she will try. With R0 patient recurrence showing up in the lungs, bones, and like Percy says, FAR away from the original site, I don’t understand how they can find it early without a PET scan or a full-body CT scan.
Willow – I think you hit it on the head when you wrote “opening her up to clinically see things” in order to ascertain a stage. My wife had undergone a lot of pre-operation tests to determine if the cancer had originated somewhere else, or had metastized somewhere else. Right before the operation the surgeon explained to the family what he was going to do and that included opening her up and exploring, then if everthing was OK, to begin the resection, otherwise he would close her up. We got a call in the waiting room telling us the surgery had started, then a couple of more calls saying everything was going along OK, and then finally, after what seemed like an eternity, a call telling us the resection had started. I believe it was at this time that my wife went from a cT1N1MX to a cT1N1M0, and her stage was established at Stage IVA.
Bruce
Hi Eli,
I emailed Dr. Olivier Farges, the lead author for the paper checking the staging in the 7th edition, about the inconsistencies between the paper and the 7th edition. His answer is as follows:
Mr Baird,
Thank you for your interest in our paper and your comment.
This comment is perfectly correct and the explanation is the following.
Our primary aim was to validate the findings of Nathan et al (“A Proposed Staging System for Intrahepatic Cholangiocarcinoma” published in Ann Surg Oncol 2008) from which the 7th edition was derived.
In this paper the authors indicate that their proposal for a new staging is the following: “A corresponding ICC stage grouping system was also developed: I – sT1N0M0, II – sT2N0M0, III – sT3N0M0 or N1M0 (any sT), and IV – M1 (any sT, any N).”
As there were a (confusing) number of staging systems at that time, we have chosen to stick to the proposed stagings.
We understand that the 7th staging of the AJCC is slightly at variance with Nathan’s proposal but this does not change the message for the following reasons:
– Stage III in Nathan’s (and our study) includes essentially N1 tumors and very few T3N0 tumors (53 and 4 patients respectively)
– in our study, survival (in particular the median survival) of patients with T3N0 tumors and Stage III tumors was essentially the same.
– therefore, Stage III in Nathan’s (and our study) correspond in practice to the stage IVA of the 7th edition.
We acknowledge that we should have clarified this. However, I also wish to underline that in its current form, there are two weaknesses in the AJCC staging:
– stage III (T3, N0, M0) is going to be underrepresented as this situation is very rare
– T4 tumors (Tumor with periductal invasion) is ill-defined, in particular for mass-forming cholangiocarcinoma with an associated periductal-infiltrating growth pattern (which is a frequent situation).
Do not hesitate to get back to me if your require further information,
Kind regards,
Olivier Farges
Dear Dr. Farges,
I am a member of the of the Cholangiocarcinoma Foundation ( http://www.cholangiocarcinoma.org/)A comment about a paper, for which you were listed as lead author, was posted on one of our discussion boards. The paper is “AJCC 7th Edition of TNM Staging Accurately Discriminates Outcomes of Patients with Resectable Intrahepatic Cholangiocarcinoma” (http://onlinelibrary.wiley.com/doi/10.1002/cncr.25712/full).
The comment was that the results presented in the paper, specifically in figures 4 and 2, did not reflect the actual AJCC 7th Edition staging for intrahepatic cholangiocarcinoma. For example, in figure 4, N1M0 is identified as stage III and M1 is identified as stage IV, whereas the AJCC 7th edition identifies N1M0 as stage IVA and M1 as stage IVB.
Is there a reason for the inconsistencies?
Thank you,
Bruce Baird
Thanks Eli. I’ll try to find an email address for one of the authors and write him about it.
Percy, I checked with the medical oncologist this morning and she told me that the clinical TNM status was T1N1M0. She said the patholist always uses MX because she does not know (I guess from the specimen) what the M status is.
Also, I asked the oncologist about alternating PET scans with CT scans. She said that PET scans are not approved for CC or gallbladder cancers, although they are approved for colon cancers. This is probably a Medicare thing.
Bruce
Eli – The AJCC 7th edition shows the stage for N1 to be either IVA with no distant metastases or IVB with distant metastases. However, the paper “AJCC 7th Edition of TNM Staging Accurately Discriminates Outcomes of Patients with Resectable Intrahepatic Cholangiocarcinoma” by the AFC-IHCC-2009 Study Group, Figure 4, shows lymph node metastases as Stage III. Do you know why?
http://onlinelibrary.wiley.com/doi/10.1002/cncr.25712/full
Thanks Eli for the info that the foundation’s link on staging is out of date. I found that I could download all of the previous AJCC Cancer Staging Manuals from the AJCC website for free. I downloaded the 6th version (2003-2009) and found that it matches the foundation’s info on staging for ICC (pp131-138 of the manual.) I also finally looked at the NCCN Guidelines for ICC (7th ed., 2010) which you mentioned and found the staging that Percy previously stated. It’s interesting that they dropped the MX classification (which the Ochsner pathologist used) so I assume, since they didn’t find any distant metastasis, M0 must apply. If that’s the case, my wife’s stage is Stage IVA.
At least that’s what it looks like until after I digest Percy’s comments. Percy, I just learned today, after reading the 6th edition of the cancer staging manual that there is both clinical staging and pathologic staging. The surgeon never told us the clinical stage. He did say that it was intrahepatic cholangiocarcinoma but because the cancerous lymph node, which was pressing against the common bile duct and causing it to bleed on the inside, I thing he said he was going to perform the surgery more like he would do extrahepatic cholangiocarcinoma surgery. We had conflicting opinions on whether the lymph node had fused to the common bile duct. I believe the surgeon thought it had and the doctor who inserted the stent thought they were separable. The surgeon intially said that he would have to remove all of the right lobe and some of the left lobe, a total of 72%, but after the surgery, he said he didn’t have to remove as much as he initially thought. A couple of weeks after the surgery we met in his office and he gave me a copy of the pathology report and he went throught it with us, emphasizing that it was the best he could have ever expected, specifically addressing the 1 positive node out of 7, and the 2 cm margins. Later the oncologist went through the report with us and the one thing she was concerned with was the “poorly differentiated” histologic grade.
The pathologist report shows the following:
SPECIMEN:
1) Falciform ligament – fibrofatty and vascular tissue. Negative for malignancy
2) Hepatic Artery Lymph Node – One (1) benign lymph node
3) Biliary Stent: Gross Diagnosis only
4) Proximal Bile Duct Margin: Negative for Malignancy
5) Liver Segments 4B, 5, 7, and 8; Partial Hepatectory: See Synoptic Report:Specimen: Liver
Procedure: partial hepatectomy, major hepatectomy
Tumor size: 6.4 cm
Tumor focality: Solitary
Histologic type: Cholangiocarcinoma
Histologic grade: Poorly differentiated G3 out of 4
Tumor growth pattern: Mass forming
Microscopic tumor extension: Confined to the hepatic parenchyma
Hepatic parenchymal margin: uninvolved, 2 cm from tumor
Bile duct margin uninvolved
No lymphovascular or perineural invasion identified
pT1 N1 MX
One (1) hilar lymph node positive for metastatic carcinoma out of 6
Additionally, hepatic artery lymph node is benign
Background liver is unremarkableImmunostains performed with appropriate positive and negative controls. Tumor cells are positive for keratin 7 and negative for keratin 20, hepatocyte antigen, and estrogen receptor. Findings are consistent with intrahepatic cholangiocarcinoma. Tumor surrounds and invades a medium sized branch of the biliary tree. There is marked acute inflammation and necrosis in the tumor.
I think I included both info from the surgeon and the pathology report in my previous messages on the discussion boards.
When I said “spread to the liver” I envisioned the cancer starting in a small bile duct contained within the liver and spreading from there to the liver which is in direct contact.
Thanks for the advice on the PET scan. The surgeon said that their policy is a CT scan every 6 months. Maybe this is a Medicare thing. I’ll ask the oncologist about the PET scan.
Right now my wife is scheduled to get GemCis for 4 months on a 21 day cycle, the amounts being the same as used in the Phase III study, and radiation with 5FU for 5 weeks, 5 days a week. So, as you suggest, what I’m trying to do is research what we can do to extend the recurrence time. I’ve read a lot of the published studies and I can’t find the answer there, so I’m trying to research the members of this foundation to document their experience. So, far I’ve got about 50 on the spreadsheet, but unfortunately, only 1 of the 50 comes close to my wife’s condition. I thought you might be a candidate because of the Stage IIB you reported. The report I had said Stage IIB for bile duct cancer indicated the cancer had spread to nearby lymph nodes in addition to other factors.
Percy, thank you for your kind remarks about my contribution to the board. Eli and I are both engineers, and I think it is in our nature to be detailed oriented. I’m 76, retired when I was 57, and most of my career as an electrical engineer was supporting NASA on the Saturn/Apollo “moon” program, the Space Shuttle, and the International Space Station. After the moon landing in 1969, people said, “If we can put men on the moon, then we should be able to _____ (fill in the blank).” Perhaps this should also apply to finding a cure for this horrible disease.
Bruce
Oh Oh! I went back and looked at PCL1029’s comments about ICC which are,
“The staging (TNM) for ICC are Stage 0,I,II,III,IVA and stage IVB.”
The foundation’s discussion on staging, linked in previous post, shows,
The staging (TNM) for ICC are Stage I,II,IIIA,IIIB,IIIC and stage IV.
So now I’m really confused.
Bruce
