November 23, 2013 at 7:26 pm #77356
and make sure you wash the hands to get rid of the hand sanitizer when you do not need them any more. You do not want to carry dead germs on your hands when you prepare food or go to bed at night.
I use isopropyl alcohol to wash my hands at times but most with soap and water over 15 seconds between fingers.
God bless.November 23, 2013 at 7:02 pm #77355marionsModerator
Caroline….I would like to add to Lainy’s suggestion:
Instant hand sanitizer – have it on hand at all times.
If possible: medical records (copies) re: to diagnoses and medications prescribed.
Mask-when in large crowds or if someone presents with sneezing and caughing
Wishing for your parents to have a wonderful trip.
MarionNovember 23, 2013 at 5:20 pm #77354
Hi Caroline. You already answered my question! I can only go by what I am on for Ulcerative Colitis (Remicade) as the side effects are a lot alike and my Teddy never had chemo. I would not fly (I see you are driving) during cold and flu season. I don’t go to movies anymore and stay away from big crowds as Remicade attacks the immune system as does Chemo. I think it would be great to take Mom to restaurants in the hope it will entice her to eat better. Other than that just stay away from ‘gourmet, fried, and not too much dairy. I find that when my body is acting up I love comfort food. Homemade soups and tossing some chunks of chicken, tuna casserole, anything with noodles. There is still lots she can eat and she might enjoy picking from the menu. Oh and NO fast food. How long is the ride? Take a pillow too. For the car food take those prepared cups of Jello, pudding and fruit, etc. And don’t forget the Meds. One last thing you may want is to ask the ONC for a name in the area you are going to just in case you need a ONC. I think this is great and I hope you are able to go and have a wonderful time.November 23, 2013 at 4:38 pm #77353
Lainy and Percy, thank you so much. Percy, your guideline is really helpful. Thank you.
I’m feeling such support from you all that I’m going to ask another question. What are some precautions one should take when eating out & traveling while on chemo? My mom’s ONC advised that she not eat at restaurants with low health grades on days 8, 9, and 10 of chemo, but are there any other precautions one should take? My husband and I are thinking of taking my parents on a short trip over the Thanksgiving break (if weather permits), and I’m wondering how to translate my mom’s pretty strict dietary regimen (she hasn’t eaten out once since starting chemo) while we’re on the road.
Thanks in advance for entertaining my newbie questions!
CarolineNovember 23, 2013 at 3:58 am #77352
the link below may help to guide you for steps of searching for knowledge about this CCA.
God bless.November 23, 2013 at 3:43 am #77351
Caroline, I don’t believe that liver flukes could even be determined as this is how it works. There is a fish, a delicacy mostly prominent in Asian Countries and now these countries are trying so hard to get people to stop eating it. It is very common for these particular fish to have the parasite, Liver Flukes, sorry can’t think of the name of the fish. To cook them they let them sit in the sun for 3 days! If you digest these fish, the parasite adheres to the bile ducts and lives there undetected for oh, 30 – 40 years. You NEVER know they are there and after the long time frame they up and leave and leave behind CC! Percy and I are both very leery of Sushi as we don’t always know where it comes from! Don’t think it is the only reason for CC but could have something to do with so many young people now getting it. We stick to fresh Trout and Salmon. I had bought a package of White Fish. Got home and saw it had come from Thailand…I dumped it. We have had quite a few Vets from Korea and Nam, My Teddy served in Korea and was healthy as a horse his whole life, Being Sicilian he would try any fish and the time frame fit, but we cannot prove it. Bottom line liver flukes cannot be detected and the CC shows up after it leaves the bile ducts. A real monster, yes? BTW GEM/CIS is the cocktail of choice and we have had many good results with it. We will hope and pray that your Mom is among the ones who benefitted.November 23, 2013 at 3:02 am #77350
Thank you, PCL1029, Lainy, and Marion for the warm welcome!
Lainy, my mom is on the Gem/Cis combo. I felt ambivalent about the chemo treatment because we were told that there’s no specific chemo drug for CC and the side effects are so serious. Now, every time I talk to my mom on the phone and she sounds a little off (like forgetting something even though she’s always had an excellent memory or talking a little too quickly or slowly), I’m wondering to myself, Oh no, is this what people mean by “chemo brain”?
Knowledge is power indeed, but I’m still trying to find a balance between helpful knowledge and stressful knowledge that may not be so helpful. For example, two weeks ago, I was convinced that my mom’s CC was caused by the liver fluke disease and emailed her ONCs asking if she needs to get a stool test! They said no, which annoyed me at the time but am now relieved about, as that would have been yet another test that my mom would have been subjected to.
Thank you again!
CarolineNovember 22, 2013 at 6:31 pm #77349marionsModerator
Caroline….I can only echo Percy and Lainy by welcoming you to our site. We are glad to help in any way possible. Most importantly though and something you have done already, continue to stay strong and educate yourself. You know the slogan: Knowledge is power.
MarionNovember 22, 2013 at 5:41 pm #77348
A big welcome, Caroline to our extraordinary family but sorry that you have to be here. I am just thrilled as you have done everything so right and quickly. CC is better handled when you are strong and patient! You have picked one of the best ONCS ever and S.K. is a great hospital. BTW you really do want an aggressive ONC. Knowledge and the best of ONCs are the most valuable tools we have to fight this. Glad your Mom is doing pretty good on the chemo. What Chemo is she having? Do not worry so much about being aggressive. You need aggression to fight this. I wish for your appointment with Dr. Fong on Dec 30th to be the beginning of a good year with good news. Be kind to yourself and know that you have come to the right place. You have picked the best because no matter what we think we know about MEDICAL situations we are never in the position to know about CC as many Doctors still don’t know about it. Much good luck to Mom and please keep us posted on her progress.November 22, 2013 at 5:15 pm #77347
I am a patient of this roller coaster disease for the past 55 months. What a ride, It takes knowledge,courage , patience ,determination and God’s Grace to navigate on this long and winding road. It is definitely not a east journey ,but along the way, you will find out a deeper understanding of ourselves.
A few of us,the patients, have been 5,10 and 15 years survivors and the new targeted therapy and radiation treatments can also extend the lives of most of us if we choose to do so.
Welcome to the discussion board.
God bless.November 22, 2013 at 4:49 pm #9159
Hi everyone. I decided to join this community after spending hours of devouring many of the previous posts, which were incredibly helpful. Since it was especially helpful when the posts were more detailed, I will try to make mine as specific as possible as well.
My mother, who is 67 and retired, had a CT scan due to abdominal pains in mid-September this year. The scan showed a tumor on the liver, which led to a biopsy, which led to a diagnosis that it was a metastasized cancer on the liver with the primary cancer still being unknown. All that was done in Nashville.
Luckily, my mom’s older sister opened her home in NJ for my mom to stay in and suggested that she get treated at Sloan-Kettering. We were able to get an appt relatively quickly, and my mom had a PET scan there on 10/8, which also stated that she had “adenocarcinoma of unknown primary.” It also showed that her tumor had gotten larger (4.1 x 2.7 cm from 3.0 x 2.7 cm) and that her lymph nodes and the left portal vein were affected.
It was not until we saw Dr. Fong at Sloan-Kettering in NYC in mid-October that my mom was diagnosed with cholangiocarcinoma (about a month after her initial CT scan). We were relieved to get the diagnosis because it meant she wouldn’t have to be tested any longer, but we were also very disappointed to hear that she was not a good candidate for surgery … yet. Dr. Fong thought getting chemo first (gem/cis combo) would increase the chance of a successful (and possible) surgery.
So my mom started chemo on 10/18. The plan was to do one treatment per week for two weeks then rest on the third week. But after her first treatment during the first week, her medical oncologist, Dr. Latif at the Sloan-Kettering in Basking Ridge who is wonderful, recommended that she get a stent surgery to drain her liver because her bilirubin was too high for chemo to be effective. So my mom stopped chemo mid-cycle, and we went to the main hospital in NY for the surgery. Drs Brown and Getrajdman performed the stent surgery, and after two attempts (on two separate days — we stayed at the hospital three nights), they were able to place two metal stents successfully. Since then, her bilirubin numbers have been going down (1.1 was the latest). Oh, and she was never jaundiced and it wasn’t until the day of her stent surgery that she felt itchy.
So after one week of unexpected “rest” from chemo, my mom started chemo again on 11/4 and is going strong. She’s tolerating the chemo relatively well. She’s not losing weight and is exercising regularly. The side effects she’s been experiencing are: loss of appetite (she’s forcing herself to keep eating in spite of it), hair loss (though not drastic; she does have a lot of hair though ), tingly sensations in her fingers, fatigue, shortness of breath when she’s going up the stairs, and body aches. These symptoms haven’t been debilitating or constant. We’re very grateful for her attitude and spirit.
She will continue her chemo treatment until her next appointment with Dr. Fong on 12/30. She’ll get another CT scan then, which will hopefully show us that the chemo has shrunk her tumor and she’s a better candidate for surgery. Until then, I’m getting the sense that there’s no sure sign of knowing whether the chemo is working or not. Based on what I’ve read on the discussion board, it doesn’t sound like the tumor marker numbers are always the most accurate indication. Do any of you have any thoughts on this?
In the beginning, I had a very hard time just leaving everything to the doctors and going along with what they said, especially when it came to chemotherapy. I found the discussions on “to chemo or not to chemo” really helpful. Given my mom’s own wish to fight as aggressively as possible and her overall health otherwise, to not chemo wasn’t really an option, but it was helpful to hear different opinions. The doctors at Sloan-Kettering seem to have a very aggressive approach about chemo and medication which makes me feel uneasy, but I’ve been deferring to their treatment plans in the hopes that those things will get my mom to surgery soon.
I felt such love and compassion from reading the posts on this discussion board. Since my mom’s diagnosis, we’ve been in a perpetual state of waiting — waiting to get the test results, waiting for appointments, etc., etc. — and not knowing. It’s been an ongoing test of patience and faith, which I often think I’m failing. Because of that, I’m realizing I need to remind myself just as often to be more generous with myself. I think this board will be a good support for that. I’m so grateful that I found it. Thank you all.
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