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I am in the D.C. area and saw this piece in the Post today. We have all lost a great champion and role model within the media community. Discussion board readers saw through your posts his courageous fight and your untiring advocacy for his care. Please accept my condolences and prayers.
Capecitabine is one of the chemos used for Cholangiocarcinoma.
In my case, it was used for adjuvant treatment (after surgery) together with gemcitabine. I experienced few side effects and the treatment was tolerable. One capecitabine side effect that affects some (not all) patients is “hand-foot syndrome” which results in redness, peeling skin and discomfort in the hands and feet. Skin cream with urea (at least 10%) as an ingredient can help. I started applying the skin cream morning and night to my hands and the soles of my feet from the beginning of the capecitabine treatment, which helped keep the symptom under control when it appeared after six weeks of treatment. Wearing thick cotton socks and avoiding hot water (dish-washing, hot showers) also helped.
I hope your mother has a good outcome from this treatment.
First of all, what wonderful news you are scheduled for surgery.
I was trying to remember how I felt in the weeks before my resection. What I recall is rushing through a massive to do list, getting the house and family organized. I felt like closets had to be cleaned, papers filed, supplies laid in. I had about the worst luck in this regard as our heating system failed the week before surgery and had to be replaced and then my parked car got smashed by a hit and run driver the night before surgery. I was on the phone with the insurance company as I was being wheeled into the surgical suite. In retrospect, while not fun at the time, all my household issues kept me distracted and I ended up not worrying that much about the surgery itself. I am not sure the exact lesson in this, perhaps it is to keep busy and focused in the days prior.
As to the rigors of the surgery itself, I was initially in the ICU for maybe two days, somewhat out of it, then increasingly more alert over several more days until I was discharged after a week. I was fortunate not to have complications. If I had to do the experience over, I would try to walk more while in the hospital, which is hard initially. Also the drugs are initially pretty intense – my first act after waking up after surgery was to send a selfie to my boss showing all my tubes and machines in their glory, so maybe another piece of advice has to do with prudent access to the cell phone while in the ICU.
Once home, I did need occasional oxygen for about a week. I had a drain that had to be emptied periodically, which was removed after three weeks. Showering was complicated due to the stitches and bandages plus the drain. I ended up wrapping my midsection in Saran Wrap before taking a shower. After a few days home, I was walking outside a bit. I got myself off the pain medication within three weeks so I could drive again, and stitches were removed also after three weeks. I was back at work (to a desk job) after two months.
The hospital arranged a visiting nurse who came about five times over the first ten days, to take vitals and check my incision. Diet was initially soups and juicing, it took maybe a week to get back to more normal eating.
This is what I remember. All this said, each person’s experience is different so hopefully others will chime in with additional experiences and advice. Looking back it was not the easiest period of my life but all manageable and my recovery was steady over the weeks following. My advice to someone going into this surgery would be that — like most challenges in life — it is something to work through, with time and patience and accepting there may be possible bumps along the way.
P.S. I found helpful prior to surgery reading the blog of a British fellow named John Finch who describes his day-by-day experience with a liver resection in extreme detail – if you would like this level of detail. http://www.johnfinch.me.uk/diary.html
I wish you the best possible experience and results. Regards, Mary
It is positive to hear that your mother-in-law’s scan showed response to treatment.
I have seen some references to the phenomenon you describe. I believe it is called “flare” or “flare response.” In other words, the first step in a positive response looks like a worsening. If you google that term you may find more information.
Here is one article. If not directly helpful, maybe it will suggest routes to look for further materials. (Being a patient and not a medical expert, I cannot comment on how recognized this article is.)
Regards, MaryFebruary 27, 2017 at 7:09 pm in reply to: Source of CC: Background Information about you or family member #94193
Thank you for reminding us all about the risks associated with aspirin. The article I posted references low-dose aspirin, which is recommended by doctors for certain individuals age 50s and up who have risks of heart disease or stroke – which was my case and why my GP recommended it for me.
Incidentally, I was told to stop taking the aspirin while under cancer treatment. Doctors said I could restart low-dose aspirin once my treatments were done and my blood counts normalized but I find when I try to resume, even that tiny dose is irritating to my stomach, I guess possibly a lingering side effect of the chemo and radiation.
I want to add that your posting of research article citations on this board is incredibly helpful -thank you!
Regards, MaryFebruary 26, 2017 at 5:37 pm in reply to: Source of CC: Background Information about you or family member #94188
I also wondered about statins and cholesterol, since this is the only prescribed daily med I have taken. My understanding is that there are studies showing statins to protect against various cancers, including this one for cholangiocarcinoma.
There is also research showing low dose aspirin to be protective for cholangiocarcinoma.
I was taking both a statin and low dose aspirin during the years before my diagnosis, so while it seems they protect others, they did not protect me!
Darla and Debra make an important point, that it may not be the drugs per se but the underlying conditions that are why we take them that play a role, via inflammation. In my own case, I saw in the research various measures of inflammation (neutrophil-lymphocyte ratio and platelet-lymphocyte ratio) that can be calculated from routine blood count data, and with that info looked at the CBC from my last pre-diagnosis physical. There was no indication of inflammation suggested from these indicators for me. Big disclaimer – I have no background in medical research, so am making a huge assumption that this do-it-yourself calculus was valid!
Regards, MaryFebruary 25, 2017 at 2:21 am in reply to: Source of CC: Background Information about you or family member #94179
This is certainly a topic we all think about!
I am a CCA patient in the group with no risk or predictive factors. No relevant family history. I was diagnosed just after I had completed a very thorough physical involving my GP and three specialists, with the usual range of cancer screening tests, and had been told I was in excellent health. Cancer was found incidentally four months later because I sought treatment for a sore shoulder after I spent an afternoon moving boxes.
Only med is a statin. Otherwise, nothing remarkable relative to your list of questions, e.g., reasonable diet but not a vegetarian, moderate exercise but not an athlete.
This is one of the negative features of this cancer, it can get way out of hand before there is any awareness of its presence, and being a rare cancer, no one is even looking for it I am still amazed that I had a 9cm mass with no symptoms and normal liver counts.
I am sorry to hear your wife is experiencing pain around her port. In my own case, after I was past the initial pain from the port being installed which lasted about a week, there were subsequent episodes of soreness that occurred with daily activities. For example, some sleeping positions really irritated my port and the car seatbelt was most unfriendly. When the irritant passed, the discomfort largely went away within maybe 30 minutes or an hour. The discomfort was both at the port site and sometimes in my neck. Only once did it get so painful that I called the nurse, and her advice was similar to what your wife was told – probably nothing to worry about but call back if it got worse. What I experienced was more discomfort and soreness, however, rather than serious pain.
I am not a doctor, but my recollection of the advice I was given was to report any concerning pain to the nurses in the oncology department where I was treated. If I had experienced more severe pain that did not go away, my instinct would have been to push for an appointment for my medical providers to take a look.
I both loved and hated my port. It did make the chemo easier.
I hope this is helpful.
Here is a link to a report on the NY Fashion Week event from a reporter in Finland with an absolutely gorgeous photo of Lisa (scroll down).February 12, 2017 at 2:07 am in reply to: Anyone with abdominal lymph node or peritoneal mets after resection? #94138
It is hard to find good information on treatments and each major center seems to do things a little differently. Here is how my treatment was organized. As part of my resection, my understanding is that the surgeon first did a laparoscopic “look-see” at the start of surgery. This was to look for any metastatic spread outside of the liver as well as to plan the procedure. I think this is the typical practice. If there had been evidence the cancer had spread, the surgery would have been halted. I recall being told prior to surgery that the surgeon thought there was a 50 percent chance the surgery could be successful, due to the size and location of the mass in my liver. When I woke up in the ICU, my first thought was to look at the incision to see if the full resection had occurred – luckily it had and with clean margins.
After surgery, I was advised to have adjuvant treatment due to a slim margin and the vascular invasion seen in the pathology report. As part of the adjuvant therapy, I had IMRT radiation (with capecitabine) focused on the tumor bed and the local lymph nodes close to the liver.
I have a chest-abdomen CT scan every three months which looks at, among other areas, the peritoneum and the lymph nodes in the abdomen, and so far thankfully there has been no evidence of spread after 15 months.
I hope this information is helpful, and wish you all the best as you look into treatment options.
Dear Lainy – yes, that was me! Mary