Topic: Part 2 my sis has cc

The team  she has , we have a lot of faith in. MY poor sister , her name is Becky has been through the pain of the two drains, several infections, low potassium, low magnesium, low grade fevers, infection at the drain wound, multiple drain changes, nausea, vomiting , dizziness, no appetite, she has lost 40 lbs. since Aug. 1 and I am clueless how to help her now. Does anyone know what she can do do build herself up and bring her bilirubin down? Because if she can't have the chemo what chance does she have?Thanks for listening.

Re: Part 2 my sis has cc

SRP, Hi, I am back again.  Are they giving her something for her nausea? There is no need for her to be suffering with anything, they have RX for everything. As for eating I would suggest no big meals, instead let her graze during the day. I used to make my husband Carnation Instant Breakfast. He loved the vanilla and I would blend in a banana. This can take the place of any meal and had all the nutrients. I know you love your doctors but if at any time you feel something is not being done don't hesitate to get another opinion. We are big believers in 2nd and 3rd opinions. You also want to make sure that your hospital and ONC have treated CC patients before. You will want to read up as much as you can on CC as knowledge is a great tool to fight this Cancer.  Feel free to ask, advise or just vent, we are here for you. Please do keep us updated as we really care.

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: Part 2 my sis has cc

I am so sorry for all Becky is going through.  My heart goes out to her.  I would assume that your sister’s  bilirubin will not come down until sufficient drainage has been achieved therefore, I would ask the treating physicians where the blockage is occurring.  I am hoping with all my heart that things will turn around for your dear sister. 
Hugs and tons of good wishes are heading your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Part 2 my sis has cc

Thanks so much for your concern. It means a lot to know there are people who know what we are going through. I say we because although I don't have cc , there are days that I feel as if I do. As her caretaker I suffer when she does, I watch the numbers constantly, I try to   keep her spirits up, try to get her to eat and walk around and I constantly struggle with whether to push her to move around and the next minute I look at her face and beg her to rest. I sit with her during the hospital stays, the procedures, and the doctor appts. Becky is my only sister and we are very close. We are 1 year and 1 week apart and I don't know life without her. As the big sister I have always been the one to take of my siblings. I took care of my mama and my daddy until they died. My mother at 66, went in the hospital to have a benign tumor removed from her colon. That night she suffered massive stroke , went to rehab , was making progress when she got sick. The facility said her swollen belly was due to gas. After several days of that, I threatened to physically take her out so they got us to the hospital. Subsequently we found out she had a perforation in her bowel ,got sepis and died. I insisted on an autopsy and we found out she had pancreatic cancer . hence the stroke and perforation. My father in essence died with my mother . He fell, broke his hip almost bled out so they sewed him back up and sent him home. Dementia set in and was in a nursing home where he also got  blood clot in his colon and died. I tell you all of this to let you know that this is not my first role as caretaker. I learned a few things along the way so I know that the docs will never fully inform you so you better do your research. And through all that my siblings including Becky were pretty much absent and although I have forgiven her , I guess I didn't learn whatever it was God wanted me to learn so here I am again. My prayer is that I do this with with more grace than I did before.Enough of that.

Re: Part 2 my sis has cc

Wow, I didn't realize that all that was still on my mind. Thanks for letting me vent. Anyway, to address your questions. Becky is on phenergan every 3 hrs.for nausea. She tried zofran, gave her diarrhea. The phenergan helps better. She had compazine in the hospital several times but she says it didn't help. She is also on dilaudid, ativan when needed. Avelox for infection, potassium, magnesium,  nexium and other things periodically. As for the drains , she goes for an ultrasound this afternoon to see if the drain is properly placed. My goal is to do whatever it takes to get her built up for chemo. She drinks a lot of water. She has boost w/ protein which she likes and fruit cups, pudding cups applesauce and occasionally she will eat a bland sandwich or a frozen dinner. Not all of any of it but something. My concern is that we are in this terrible cycle. Like today she can't eat or drink prior to the ultra sound so by tonight she will be exhausted and have no appetite. I feel as if we are running in circles. One step forward 10 backward. I have suggested a lot of small meals for her but she forces herself to eat and wants to get it over with.  Any advice to get her stronger would be great. Thanks

Re: Part 2 my sis has cc

Dear SRP, WOW! I think God made you a Caretaker again because he knew you could do it well. Unfortunately you ARE running in circles except we call it a roller coaster ride, up and down. To me, it sounds like you are doing things right, the only thing I would suggest is no frozen dinners as they are so high in salt and the other thing is I would not push her to do more as most often the strength is really just not there. CC has a mind of it's own. I just remembered that the ONC did order B12 shots once a month for Teddy and that really helped give him more energy. Last but not least you must be kind to yourself, take some breaks and get some rest. As Caretakers we need the break mentally as well as physically. Good luck on the stent exchange and be strong!

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: Part 2 my sis has cc

Hi SRP,

Welcome to the site. I am sorry to hear about Becky and what she is going through right now. That is a tough situation for you both. From what I have read, you are doing everything that you can to help your sister and I know how much that will mean to her. But please also remember to try and look after yourself as well. I was my dads carer and still am my mums carer too and I know how hard this is for you.

I am glad that you have joined us all here as you have come to the right place for support and help and I know that you will get tons of both from us all. So please, you post away and vent as much as you want to as well! No apologies are ever needed for venting about things here! We are all here for you and know what you are going through.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Part 2 my sis has cc

Thanks so much for the care and concern. I am so blessed to have a husband that supports me helping my sister. Right now I am unemployed so that is a huge help. Lainy, thanks for the advice about the frozen dinners. That is what she asked for and I just didn't think. I plan to ask the Doc about the B-12. And Gavin, thanks so much for the support. It is hard to be a caregiver, but I MAKE myself separate from her some days, just so I can breathe fresh air. I also have a wonderful church family that loves, supports and prays for us daily. This afternoon, because her bili is so high Becky had an ultrasound and we found out that she has GALLSTONES! wHAT ELSE! I will call the doc in the morning to set up surgery. I just pray that she has the strength to bounce back from this. Does anyone know if the gallstones could be related to the cc?
Gonna do research tonight to see what I can find out. Thanks guys, It is a relief to put my concerns with people who know what we are going through.