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Just updating for the new year (Happy New Years) – no news has been good news so far for Katherine.  Katherine finished radiation in October, and both her surgeon and med oncologist rejected continuing Xeloda for her since she’s has so much chemo (5 months preop, 3 months post op).  They figure if the gem/cis preop and gem/ox post op didnt kill off the cancer cells, xeloda wouldnt do much more. Considering the meningitis episode happened while on radiation/xeloda, I can see the risk/benefit thinking of her doctors.  In November kathy had another scan, and still nothing showed up in the liver! She still has the nodule in her lung but it remained unchanged.  Her Ca 19-9 lowered to 20-60 since the end of treatment, but I’m not sure when her next check will be.  Her med onc recommended a scan again in 6 months but we are listening to her surgeon and will have another scan in 2 months.  She’s also back at work. It does feel a little weird to be in the 3 month/ no treatment/ just scans cycle now, considering for the past year and a half its been constant treatments, following labs, side effects, etc.  .

Hi Kasia,

Sorry to hear that you are a recently diagnosed patient.  In regards to difficult to resect tumors, some surgeons are more skillful and more willing to operate than others.  You should send your scans to a 2nd or 3rd opinion with surgeons who deal with cholangiocarcinoma a lot to see if it is truly unresectable.  In response to your question about the ex vivo surgery, I know Dr. Kato at Columbia/NY Presbyterian has done them for other liver cancers, but I’m not sure if they have performed any on a cholangiocarcinoma patient. I think the NY Times had a write up about it, but I believe that patient only survived for about a year post op.

Good luck in your treatments!

It’s been an interesting 2 months since my last post about Kathy’s course. In the middle of her radiation/xeloda treatments Kathy got meningitis, and is now home recovering from it. I wonder if I should start another thread to see if anyone else has had this complication during radiation or chemo.

After the scan in July, kathy was having a colitis attack, was started on lialda and uceris for it, and when they started radiation her platelet count had decreased to 23(thousand) so they held off on radiation for a little. the team was also worried about some questionable lymph nodes that we werent told about on the july ct scan. The platelets came back up on their own, and the team did a PET scan, which had equivocal uptake in the liver (value of 3) area, but none of the abdominal lymph nodes were positive. Therefore they continued with the radiation/xeloda. At about the 10th treatment (of 25), kathy felt a little feverish (100) and had sweats. After talking to the radiation onc team, it was considered to be a normal side effect from the radiation. She then had 2 more treatments (thursday and friday), but other than the low fever felt fine. We were told that unless the fever hit 102 or she was short of breath, that there was no need to go to the ER. Then that sunday (2 days after her last radiation) kathy went to work, and after work started to vomit and have a bad headache.

I brought kathy to the hospital, and over the course of the next 12 hours she basically became more lethargic until she became unresponsive and started seizing. It was discovered that she had meningitis from listeria, and she was started on the appropriate antibiotics and keppra (anti seizure med). Her body’s immune system was probably weak from the radiation and chemo which led to catching the listeria(which is normally caught from food). After a few days, she luckily started to get better, and miraculously there seems to be no brain damage or lasting neurological deficits. She spent a week in the ICU, was intubated for about 5 days, and then another week in the hospital before being able to come home. In the hospital her platelets dropped again (down to 3,000- she needed transfusions), but the hematologists think this was due to one of the antibiotics, and not a more serious bone marrow issue from the chemo. She had also started on Lialda and Uceris before the hospitalization, I wonder if that couldve played a role in the platelets being low. She’s now home and connected to a pump to give her antibiotics for the foreseeable future via a PICC that was placed. Shes still weaker than her baseline, and not eating well, but im hoping that will improve as the meningitis gets more under control (ive read it takes 3-6 weeks of antibiotics to clear).

Tomorrow we will see the radiation oncologist to see if we can proceed with the last 12-13 sessions of XRT. We will also meet with the medical oncologist to discuss if she will continue the xeloda Initially we were pushing for a full 6 month course (like the bilcap study) but with this recent course of events I doubt he will want her to continue on it.

Anyway, we were always told that the 3rd week of radiation is when your body starts to really feel it, so we thought initially that kathys symptoms were no big deal. I hope no one else ever gets this complication, but if you have a headache and a fever while on chemo, radiation or otherwise immunocompromised, get yourself checked out. Kathy was really lucky and a few more hours delay of treatment could’ve turned her meningitis prognosis much much worse.

billy

Molly,

Sorry to hear about your experience with your doctors. If you felt like getting a second opinion about the mets in the omentum however, I know the surgery team at Mt Sinai in NYC were going to perform HIPEC on Kathy if she had mets during her surgery, which thankfully she did not. It may be worth a call if you want a second opinion or to learn more about options- the surgeon who performs the HIPEC is Dr. Sharpel , she was always nice when talking to us.

Kathy just got back from meeting with the surgery team at Mt Sinai and getting her first post op Ct scan (3 months). Since her surgery her Ca 19-9 and alk phosph have been slowly creeping back up (CA 19-9 went from 23 post op –>47–>80’s) , and shes been on 6 rounds of adjuvant GEMOX. She’s hopefully starting radiation/xeloda soon although we dont have an exact date for it yet. The doctors also confirmed she has PSC.

Her Ct scan showed nothing in the lymph nodes or liver, and the surgeon seemed quite pleased. Her blood vessels in the liver also seem clear. She thinks radiating the surgical margins can help get rid of whatever microscopic disease is still lingering along with the chemo. However, there was a single 2 mm nodule that showed up in her right lung that wasn’t there before. She says we’ll watch it and scheduled Kathy’s next scan for October (MRi abdomen/CT chest). Can this be a met? If so, should we ask if they can radiate it during the IMRT treatments? I’m going to guess its too small to be biopsied at this point. Would it be weird for a met to show up with no other lesions showing (although one of her lymph nodes was positive when taken out)?

Thanks,
Billy

The median overall survival was 15 months longer with xeloda than wothout. Not a 15 total month survival. I believe it was actually 50 months with vs 36 months without the xeloda post op. Also interesting that he spoke of another trial in europe that may compare gem/cis vs xeloda for adjuvant therapy.
-billy

Some genetic mutations are more sensitive/resistant to the chemo from what I understand. For kathy, her ATM mutation, which is pathogenic, also makes the cells more sensitive to -platin type chemo (for ex- cisplatin)

http://meetinglibrary.asco.org/content/176861-195 :thats a link to see the abstract of results. Although not statistically significant, there was a trend for better median RFS (30 months vs 22 months) in the GEMOX group. I wonder if they looked deeper to see if there was a significant difference among those who were R1 or lymph node positive.
-Billy