starting chemo on may 1 - any tips

Hello Ash,

Welcome to this site. I am sorry your Mother has to go through this. My daughter has cc and has been on chemo since Sept. 2011. She had Gem/Cis and 5-FU. Recently, the Cisplatin has been dropped because her oncologist said it is too hard on the kidneys to be used for that long. I would say that the Cisplatin was the hardest on her. It was hard on her platelets. They were low quite often. She also lost her hair. We are not sure which chemo did that. She was tired and achy for a few days. Make sure to ask for nausea medicine in the iv when she gets chemo and keep taking a pill form such as compazine for a few days after chemo. Take it around the clock, even if she doesn't feel sick. Because once you get nauseous, it is hard to get it under control. There is also a popular drug called Zofran that a lot of people use. We discovered that Zofran gives Lauren very bad headaches so she cannot take it.  I am not a doctor. This is just what works for Lauren. Since Lauren has been off the Cisplatin, you can't even tell she just had chemo. She has way more energy and feels better. This is how I know that Cisplatin was the chemo that made her feel bad. Everyone is different, and everyone has different reactions to these drugs. I would also say to keep some food in your Mom's stomach such as toast, crackers, noodles, and rice. This also helps with nausea. I would go into this with a positive, fighting spirit. Having a good, upbeat attitude really helps. Lauren's doctors always say they are trying so hard to help her because she has such a positive attitude and is such a tough fighter. I wish you all the best. Let us know how everything goes and if you have any questions, please feel free to ask on here or you can e-mail me.

-Pam

Hi,
welcome to our small world.
1. Gemcitabine and Cisplatin are the current standard of choice of Tx for cholangiocarcinoma(CCA). there are still many other regimens to choose from if this one is not suitable for your mom in the future.
Gemcitabine is easy to take,minimum side effect like low platelets count is one of the the most stand out side effect. Nausea and vomiting,loss of hair,fatigue,body ache,nephrotoxicity(kidney);hypomagnseium and hypopotassium are side effects of cisplatin. Nephrotoxity is accumulative and therefore ,depending on the health of the patient,after certain # of cycle(ie: 6 cycles) ;review of the regimen may be a good way to protect esp. the kidney if the side effects cannot be tolerated well.
To start the chemotherapy each time overnite is a good idea and I don't know why we cannot do this here in the States. It is less anxiety to the patient and they can sleep thru some of the unwanted side effects of the chemotherapy.
2. 63 years young and otherwise healthy individual after left liver resection, (even had a lympth node positive  involvement )has a good chance to live long enough for the next new thing to come in radiation oncology or/and medical oncology to extend our lives with much less side effects and enjoy God's mercy for those who suffer. I do not see a "magical pill "will be  discovered  in the near future like penicillin for infection that provide a "CARE" for us.
3. Continue to pursuit other options such as radiation treatment ;read and learn about it and other development of treating this CCA is the way to handle this disease. I am a CCA patient for 35months,like your mother,I had the left lobe completely resected;on gemcitabine for 14 months;off  the chemotherapy for 6 months,CCA came back;RFA and chemoembolization; then re-resection again.Now is only on Xeloda(pro-drug of 5FU);and the rest is up to God's mercy.

what I am trying to say is this; CCA is a long and winding road to navigate ; it require courage,knowledge and patience; it is not easy but it can buy time for your mother.
keep in touch,
God bless.

Hi Ash,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your mum. But glad that you've joined us here as you will get tons of support and help from us all.

I can't help you with personal experiences about chemo as my dad never had that, but I know that you will get a ton of responses from the great members here. Also, have you looked at our chemo board that can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

There are tons of posts on it from our members and I am sure that it will be of use to you and your mum. Also, as your mum is being treated under guidance from Dr Javle at MD then I know that she is in good hands. If we can help you at all then please just ask away.

Best wishes to you and your mum,

Gavin

Hi Ash,

Thanks for letting us know that your mum starts her chemo tomorrow. I hope that it goes very well for her and I will be keeping my fingers crossed for the best possible outcome to this. And please let us know how she gets on with it.

Best wishes,

Gavin

Dear friends,

thanks once again for your support and encouraging messages. I am happy to report that the first day of chemo went off well.  It was an extremely long day, with the IVs starting at 10 am and going on till almost 10 pm. First, there was the hydration IV, followed by an oral anti-nausea, followed by gemcitabine, followed by some IV to flush the kidney, then saline again, followed by cisplatin, followed by anti-histamine and anti-nausea med again.

She was overnight at the hosp, and is going home now.

My mother just had her first round of chemo on Monday the 14th so I am here with you, at the beginning and wondering and anxious about the journey. My mother also tolerated her first round of Gemzar and Cesplatin well and is also on oral Xeloda every day for 2 weeks. She did get a UTI (urinary tract infection) and I am wondering what that's about but it was affecting her ability to sleep. The day after chemo she gardened, she cleaned bird baths, she went out to buy a new computer, and she went to dinner with friends. Now, 3 days later, she is very tired but still going out.

I have heard that the second round can be harder than the first so I hope she does not have a false sense of ease about chemo but then again, I am just trying to stay present with it all and enjoy these good days and not prepare for the harder ones. That's my plan at least.

Wow. Thanks Kris. I had no idea to think about the germs in dirt and bird poop but that is good to consider. My mom is also super tan and never wears sunscreen so I will have to talk with her about that. Are you more sensitive to the sun now, or what is the reason for sunscreen?

Hope you get to go dancing soon!

Melissa

Yes! Keep fighting and dancing Kris! And thanks for the advice...think like a germaphobe! Now, any suggestions for swollen legs that will not go down due to blood clots? That's my next area I need to study.
-Melissa

I just copy and pasted these last posts and emailed them to my mom. I told her that we need to rethink these normal activities and be a little more careful. She does not appreciate that this is going to affect her life but maybe she can use gloves when she gardens or clean bird poop now.

Thanks for helping me realize these very basic things. I have so much to learn!

Melissa