Topic: need more advice

Well, I finally convinced my husband's family to obtain a second opinion. The doctor concurred that the 5-fu/oxali combo is the way we should go. I am worried though, my MIL finished her first round last Sat. She is so weak and in so much pain...I just don't know. She has now not eaten solid food for three weeks plus (except for the night she ate a pot brownie and woke up wanting pancakes). She has completely lost her appetite.  Her pain is not great. She is so uncomfortable when sitting, that she spends most of the day laying down. She is still on fentanyl patch and percocet every 4 hours. I referred her to an outpatient palliative care team who would help her in conjuction with the chemo, but the family hasn't called. Her white count increased from 10 to 15,000, which is elevated. She has no signs of infection, so I am sure it is the tumor. Is that a normal occurence?
She goes in for her second round  next Tues. I was wondering if any of you can tell me around what point they can tell if the chemo is working? What isn your experience?  Do they just wait to see if symptoms subside/worsen? or do they do frequent CTs? I know the whole regimen is 8 weeks, but I can't imagine waiting that long.
Thanks,

Lindsy

Re: need more advice

Lindsy,

My mom just finished four rounds of the same combination.  Mom was never in pain, but it took time in between the rounds for her to recover.  My mom is 79.  After her first round, she was wiped.  DIdnt get out of bed for two days.  BY Day 11 she started to feel better only to start round 2 in 3 days. 

For my mom, we only know that her bilirubin count is dropping and her liver function tests look better so the docs use that as an indicator that things are progressing in the right direction.  If your MIL's blood counts are too off, they will postpone treatment or reduce the strength.  I will say that chemo does really weird things to blood counts and the cancer is no better.  If the docs were not worried about her blood counts then I did not either. 

Chemo is cumulative, but we did see that each time was so different as to how she felt.  It has been unpredictable.  I would try to encourage her to eat or try Boost or Ensure just for the calories.  Is she nauseous?  Mom takes something for that and that allows her to eat.  ALso, small, frequent meals may be easier to tolerate.  My mom definitely pushes herself to eat as she wants to be able to continue treatment.

She will have a scan next week to see if the chemo worked.

Best of luck,
Lauren

Re: need more advice

Thanks Lauren. I guess we just have to wait and see. I HATE this waiting game...it is so horrible! PLease keep us updates on your mom. I would love to know the results.

Take care,

Lindsy

Re: need more advice

Hi Lindsy,

My daughter, Lauren is on the same chemo as your mother-in-law. She takes the oral form of 5-FU though, which is called Xeloda. The Xeloda is way worse on her than the 5-FU was. She was on 5-FU with her first chemo which was with Gemzar and Cisplatin. She has to take the Xeloda for two weeks and then gets a week off. She usually gets scans every 3 months. Sometimes MRI and sometime CT. Her doctor will remove her from a certain chemo if he sees it is not working. Sometimes the dosage needs to be regulated if it cannot be tolerated. Xeloda is infamous for making feet really sore and red, so her doctor lowered her dosage from 3500 mgs. a day to 3000 and she is much better with that side effect this time. My daughter used to have a lot of side and back pain, but since being on this chemo, she has had only back pain once in awhile. She has not been as hungry on this chemo regime and she sleeps quite a bit. She says she feels better than she has since being diagnosed, so I guess that is good. I think everyone reacts differently to chemo. I think Lauren can tolerate a lot since she is really young. She is only 26. I hope your mother-in-law starts feeling better and can tolerate her chemo. If not, she may have to switch to something else. She really needs to eat something like soup, mashed potatoes, instant breakfast, or even Ensure. Goodness sakes, three weeks of not eating is worrisome. I would definitely talk to the doctor about that. I hope things turn around for her. Take care and God bless.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: need more advice

Hi Lindsy, I wanted to know if the ONC is aware that MIL is not eating and is still in pain? The chemo zaps enough energy without the pain adding to it. I used to give my husband Carnation Instant breakfast, vanilla with a banana blended in. He loved them and they have enough nutrients to replace a whole meal. Some have found Carnation easier on the stomach than the other ones like Boost. Teddy also used to get blood infections with the CC and the only way to find out was to do a blood culture. It takes up to 5 days to get results but they usually started him on Levaquin, reason I mention this is IF they did not do a blood culture she could still possibly have a blood infection. I feel bad that the family is fighting all the steps to make MIL feel better, perhaps a good old fashioned sit down (meeting)  might help.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need more advice

The waiting game is the worst!  It has however, forced me to appreciate the here and now.  Every time I think too far into the future, I just stop myself and refuse to go there.  You really learn to take it day by day and not worry twice.  I will say I am much less anxious.  Just trying to live in the moment.  The reality is none of us know what will happen to any of us.

I think it is important to be realistic and educate yourself. 

Keep in touch

Lauren